I'm happy to announce that fifteen of my paintings are going to be on display (October 3, 2011) at Overlook Medical Center, as part of their "Schwartz Center RoundsAnnual Dinner." The event facilitator, Jeanne is a friend of mine. She and I met online about six months (through my many searches about palliative care and hospice). She is the "Ethics & Palliative Care Program Coordinator" at Overlook Hospital (here in NJ). I had contacted her, asking about patient's rights and shared a brief history about my accident, and my struggles. It turned out that she and I shared a mutual acquaintance (from Kessler). We shared email correspondences over a period of several months, and she was very moved by my blogs and artwork. Before long we became friends. She has been very supportive, and caring.
She came to visit me a couple of months ago, and we discussed the possibility of displaying some of my artwork at the hospital. She explained that she worked very closely with doctors, nurses and other medical professionals and thought that the medical community at her hospital could benefit from seeing my paintings and reading my writing. She said that part of her job entailed helping new doctors and nurses learn to be more compassionate and empathetic to patient's needs. I agreed, and was happy for the opportunity. I have often felt frustrated by the lack of help that medical science has been able to offer me, and upset by the treatments and lifestyle that I'm forced to endure because of my injury. I do believe my artwork could potentially help medical professionals better understand what it is like to live paralysis, and to suffer with chronic pain and illness. It has always been my hope, that by sharing my writing and my artwork that I would educate others and open people's hearts and minds.
I truly believe in order for a cure to paralysis being found, more people must understand how horribly and profoundly it can change a person's life and how difficult it can be to live with it, everyday. I have also come to believe strongly in patient's having the right to advocate for themselves and to have the right to die with dignity (when medical science can not offer a cure or relief to severely debilitating or incurable illness/conditions). I think it is important for medical professionals to do everything within their means to give patients the highest quality of life they possibly can, to listen to what their patients are saying and to alleviate suffering whenever possible.
I think it is crucial for the medical community and society at large, to recognize that some conditions are worse than death, and when/if a patient is mentally competent to asses his/her own situation, that he/she alone should be able to determine what lengths he/she is willing to go through to preserve his/her own life and those wishes should be respected. In many ways, I feel our society is more "humane" to our pets than we are to millions of people that are essentially forced into suffering, because there is no cure, or treatment available to alleviate their pain. Not everyone with an incurable, terminal, debilitating disease or injury would choose death, over life. However, I believe there ought to be a quick, peaceful alternative available to those who want it. I hope my artwork and my writing will inspire change.
I think this dinner at Overlook hospital is another small step in my journey to open hearts and minds towards suffering, quality of life and death. I really hope my works hits a soft spot and sinks in, for all the medical professionals that attend. I hope it makes an impact.The dinner itself is an annual event, and has an interesting history. I feel honored to be included in the tradition. I asked Jeanne to tell me a little bit about the purpose of the dinners and about their collective history. This is what she sent me:
"Schwartz Center Rounds were started by Kenneth B. Schwartz, a health care attorney from Boston, who died from lung cancer at a young age. He wanted to leave a legacy of support for professional healthcare workers to enhance and replenish their abilities to provide compassionate care for patients and families. He recognized that some of the most important work of healthcare professionals is to deliver compassion to their patients (hand holding, listening, laughing, combing hair, etc.).
The purpose of the monthly Rounds are to provide a forum and “level playing field” where caregivers from diverse disciplines (doctors, nurses, social workers, chaplains, dietary workers, etc.) discuss difficult emotional and social issues that arise in caring for patients. It is a forum to explore the human and emotional side of clinical medicine ---but with the focus on the patient-caregiver relationship rather than solely on the patient’s medical situation. Even though doctors and nurses cannot cure many conditions/diseases, they can still relate to one another and to patients and families in a way that provides hope, support and sustenance to the healing process.
We have these Rounds monthly and usually present a case that was difficult or emotional in some way. We often shed tears. Once a year, we hold a special “Rounds” where we invite a patient or family member to share their views about the experience they had. As you can see, your artwork and story will be a very powerful topic for discussion and expression of feelings from all.
Your paintings and your voice will carry your story to the hearts of each of those who come and will strengthen their ability to reflect on the suffering of all patients."
Good stuff :) I'm excited to hear the feedback!
- Posted using BlogPress from my iPad
Showing posts with label cure. Show all posts
Showing posts with label cure. Show all posts
Monday, September 12, 2011
Monday, May 9, 2011
Meeting With Fr. Doug
Well, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.
He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.
I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.
He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.
I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.
Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.
Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.
I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.
After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.
Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.
- Posted using BlogPress from my iPad
He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.
I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.
He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.
I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.
Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.
Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.
I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.
After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.
Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.
- Posted using BlogPress from my iPad
Thursday, March 31, 2011
IBS & SCI
I had a long conversation with my friend Mariam the other night. She's a fellow AMFPA artist and quadriplegic (I hate that description), like me. This month marked fifteen years, since her accident. She lives on her own, in Chicago. She's an amazing artist, and has a wonderfully positive attitude about life, and dealing with living with paralysis. Although she's admitted to me that she's had her fair share of dark days, and moments of feeling like she wanted to give up on life, she lived through that rough period of her life to tell the tale, and has been trying to help me see the possibility of finding happiness, despite our injuries. We share a lot in common, and I really appreciate her insight, and her taking time to try and cheer me up.
Just like I feel it's impossible for most of my friends to see the world through the lens, and perspective on life, that paralysis has given me, it's near impossible for me to see (or imagine) my life through Mariam's eyes. I have a couple friends (including Mariam) that have been injured over a decade, and it's hard for me to wrap my head around that amount of time, living this way. When I think about the Hell these last six (almost) years have been, and my deteriorating health, my mind begins to short circuit, at the thought of having to go through this for another six, or ten years. I get chocked up, just at the thought. It's a very scary, hopeless filled future, through my eyes, at this point in my journey, right now.
Mariam said she went through a similar extremely dark period in her life, where she gave up caring. She said her poor health was a big contributing factor to her mood, and both fed off of one another, in a viscous downward spiral. I feel caught in the current of a similar cycle. It's very hard to envision any brightness in a future, that is certain to include more of the same stuff that I've been going through, and will continue to go through, unless miraculously cured. No matter how you slice it, bowel programs, catheters, lack of privacy and being dependent on others, is part of my future. Those are all inevitables, I can't escape.
Mariam agrees with me, that bowel program is a horrendous aspect of living with paralysis, that we need. However, she said that there might be ways of "streamlining" my program, so that it's not SUCH a burden. She and I discussed our routines, and I was kind of shocked by the comparisons. I have my BP every other day (in the morning). It usually lasts two hours, or more, and entails me sitting strapped to a commode, over the toilet. I have a nurse present, the entire time, who uses a suppository and manual stimulation, every ten to twenty minutes, until I'm "empty" (disgusting, gross & disturbing, I know). On top of that, I take five Senekot and two Colace pills each day. Not to mention, trying watch my diet and eat plenty of veggies and fiber. Despite all that, I still have occasional "accidents", which are terribly traumatic, and usually unexplained. I have at least one a month. Occasionally (like last week) I'll have a BP day with near to no "results" and end up then having to have BP for three days, back to back, as to not mess up my nursing schedule. In contrast, Mariam was telling me, her BP only takes 45 minutes, every THREE days.
I've gotten quite a lot of feedback from other people that have BP, and routines seem to vary widely, from individual, to individual. I've had more than one person respond to my posts (in Care Cure forums), with their own horror stories of three hour BPs, hemorrhoids and the alternative of trading it all in for a colostomy. As I've said a million times, I'm not willing to entertain the colostomy bag option. Knowing the Hell I currently go through, and how my body reacts, I also can't envision being able to get away with only having BP every three days, like Mariam. Although it sounds like a WONDERFUL alternative, to my current routine (the best idea I've heard), I honestly don't think my body could tolerate waiting that long to "go." As it is, I experience a lot of extra AD like symptoms the night before BP. I attribute the discomfort (chills, fevers, chest pressure and sweating) with gas, and with needing to go to the bathroom. I've tried taking Beano & Gas-X, on hopes of alleviating some of the discomfort, but it never does. Not to mention, the days my BP doesn't produce the "typical" amount of stool (OMG! I want to vomit, just typing this), I almost always end up having an accident, which to me, is further proof that's there's just no way my body would let me get away putting BP off, an extra day. In fact, it's been suggested to me by several people, that I ought to go back to having BP every day (like when I was living in the nursing home). I definitely had less instances of incontinence, when I was having BP daily. However, I'm at a point where I literally rather die, than go back to having BP daily.
Mariam said that she thought it's a possibility that the nurses working with me, aren't being aggressive enough, in their techniques. She and I talked at length about this, and she explained to me about having two sphincters, and the importance of the nurses putting the suppositories "up," high enough and how crucial the stimulation process is. To be honest, it was a bit too detailed of an anatomy lesson for me, and I admitted that I try to be the least involved in the whole BP process, as I can, given the fact it's my own body. Normally during BP, I try to pay attention to the news, and distract myself from the ugly realities of my life. I love it when I know I'll have a nurse with me that knows me well, because it means I can be relaxed enough, to NOT have to discuss anything about the actual BP, or give instructions. When I'm with a nurse that I'm familiar with, I basically just let them "do what they need to do" and I zone out, and try and remove my thoughts from my surroundings.
Taking Mariam's advice (knowing deep down that I need to be control and directing my care), I decided to bring up some of our discussion with my nurse, to make sure she is in fact doing everything correctly (which I was pretty sure she was). She acknowledged all of the important points, and said she'd be more than happy to try her best to speed things along. The thing is, there's often times when my nurses (including the nurse I spoke with) have told me that they've been "up there," and couldn't feel a thing. Then later that same day, I'll end up going more. So basically what MY nurses have to do, is determine when I'm "done" based on quantity, and not only just by what they feel. Sometimes they'll even have to use a second suppository to "get things moving." When it's all said and done, I never feel comfortable (meaning, not being paranoid about having an accident) unless I've gone a certain amount. It ends up being a waiting game. The nurses keep checking, and stimulating, until I "go" that certain amount. It's awful. Regardless, I'm usually always paranoid of accidents. Partly because they have happened randomly, even after a "good" BP, and secondly, because the threat is always there, and the trauma of it happening once, has been enough to keep me forever worried. It's pretty much become my worst fear, that I fear on an almost constant basis.
Before my accident, when I was around twenty, or twenty one, my mother had a scare, thinking she might have Chrone's disease. She ended up having a colonoscopy done, and was diagnosed with IBS (irritable bowel syndrome- aka spastic colon). I had always had bathroom issues myself, often suffering from diarrhea and almost always getting sick, if I was anxious, or upset about something. I decided to get myself checked out, around the same time, and was also diagnosed with IBS. I was given pills, that didn't help, and I stopped taking them. I never found any direct relation to food, or drink, but definitely believe there were psychological triggers. I can remember being sick to my stomach (with the runs) for every major event in my life. Not being unable to use public restrooms, and being highly sensitive about the matter, complicated having spastic colon, and I remember many days that I was doubled over in pain, because I HAD to "go," but couldn't bring myself to use the bathroom, wherever, or around whoever I was with, at the time.
Between my conversation with Mariam, and with my nurse, I got to thinking if maybe it's not so much my hemorrhoids that cause me so much discomfort, and make my bowel program seemingly so hard to manage and control, but perhaps it's the fact that I still have IBS. It's not that I've never had this thought before, but I always ruled it out, given the fact that I know my biggest trigger of my IBS, was always my emotions. I've always assumed, since there is no longer a conscious connection between my brain, and my ability to control my bowels, that IBS too, would no longer be an issue. I figured, if my emotions still ruled my IBS, then theoretically, I'd be able to use anxiety to my advantage, and will myself into needing to go. That most certainly isn't the case. I'm anxious/paranoid about BP specifically, 99% of the time, so based on that alone, I'd be "going" all the time. On the other hand, I wonder if my anxiety and IBS create more gas, and sensations of needing to go, that my body is interpreting as pain, and thus creating all the AD symptoms. It would explain a lot. I'm curious to know if anyone else with a SCI has had experience of being previously diagnosed with IBS, and if he/she has had any similar issues of AD and unexplained problems with BP and/or episodes of incontinence. I'm also curious to ask my doctor what he thinks. Unfortunately, there's no way to know for sure. One frustrating aspect of IBS, is that it's difficult to treat. It's even harder to try and treat something you can't directly feel. I'm grasping at straws, but it's an idea I'm curious I'd like to throw out there, and get some feedback on.
- Posted using BlogPress from my iPad
Just like I feel it's impossible for most of my friends to see the world through the lens, and perspective on life, that paralysis has given me, it's near impossible for me to see (or imagine) my life through Mariam's eyes. I have a couple friends (including Mariam) that have been injured over a decade, and it's hard for me to wrap my head around that amount of time, living this way. When I think about the Hell these last six (almost) years have been, and my deteriorating health, my mind begins to short circuit, at the thought of having to go through this for another six, or ten years. I get chocked up, just at the thought. It's a very scary, hopeless filled future, through my eyes, at this point in my journey, right now.
Mariam said she went through a similar extremely dark period in her life, where she gave up caring. She said her poor health was a big contributing factor to her mood, and both fed off of one another, in a viscous downward spiral. I feel caught in the current of a similar cycle. It's very hard to envision any brightness in a future, that is certain to include more of the same stuff that I've been going through, and will continue to go through, unless miraculously cured. No matter how you slice it, bowel programs, catheters, lack of privacy and being dependent on others, is part of my future. Those are all inevitables, I can't escape.
Mariam agrees with me, that bowel program is a horrendous aspect of living with paralysis, that we need. However, she said that there might be ways of "streamlining" my program, so that it's not SUCH a burden. She and I discussed our routines, and I was kind of shocked by the comparisons. I have my BP every other day (in the morning). It usually lasts two hours, or more, and entails me sitting strapped to a commode, over the toilet. I have a nurse present, the entire time, who uses a suppository and manual stimulation, every ten to twenty minutes, until I'm "empty" (disgusting, gross & disturbing, I know). On top of that, I take five Senekot and two Colace pills each day. Not to mention, trying watch my diet and eat plenty of veggies and fiber. Despite all that, I still have occasional "accidents", which are terribly traumatic, and usually unexplained. I have at least one a month. Occasionally (like last week) I'll have a BP day with near to no "results" and end up then having to have BP for three days, back to back, as to not mess up my nursing schedule. In contrast, Mariam was telling me, her BP only takes 45 minutes, every THREE days.
I've gotten quite a lot of feedback from other people that have BP, and routines seem to vary widely, from individual, to individual. I've had more than one person respond to my posts (in Care Cure forums), with their own horror stories of three hour BPs, hemorrhoids and the alternative of trading it all in for a colostomy. As I've said a million times, I'm not willing to entertain the colostomy bag option. Knowing the Hell I currently go through, and how my body reacts, I also can't envision being able to get away with only having BP every three days, like Mariam. Although it sounds like a WONDERFUL alternative, to my current routine (the best idea I've heard), I honestly don't think my body could tolerate waiting that long to "go." As it is, I experience a lot of extra AD like symptoms the night before BP. I attribute the discomfort (chills, fevers, chest pressure and sweating) with gas, and with needing to go to the bathroom. I've tried taking Beano & Gas-X, on hopes of alleviating some of the discomfort, but it never does. Not to mention, the days my BP doesn't produce the "typical" amount of stool (OMG! I want to vomit, just typing this), I almost always end up having an accident, which to me, is further proof that's there's just no way my body would let me get away putting BP off, an extra day. In fact, it's been suggested to me by several people, that I ought to go back to having BP every day (like when I was living in the nursing home). I definitely had less instances of incontinence, when I was having BP daily. However, I'm at a point where I literally rather die, than go back to having BP daily.
Mariam said that she thought it's a possibility that the nurses working with me, aren't being aggressive enough, in their techniques. She and I talked at length about this, and she explained to me about having two sphincters, and the importance of the nurses putting the suppositories "up," high enough and how crucial the stimulation process is. To be honest, it was a bit too detailed of an anatomy lesson for me, and I admitted that I try to be the least involved in the whole BP process, as I can, given the fact it's my own body. Normally during BP, I try to pay attention to the news, and distract myself from the ugly realities of my life. I love it when I know I'll have a nurse with me that knows me well, because it means I can be relaxed enough, to NOT have to discuss anything about the actual BP, or give instructions. When I'm with a nurse that I'm familiar with, I basically just let them "do what they need to do" and I zone out, and try and remove my thoughts from my surroundings.
Taking Mariam's advice (knowing deep down that I need to be control and directing my care), I decided to bring up some of our discussion with my nurse, to make sure she is in fact doing everything correctly (which I was pretty sure she was). She acknowledged all of the important points, and said she'd be more than happy to try her best to speed things along. The thing is, there's often times when my nurses (including the nurse I spoke with) have told me that they've been "up there," and couldn't feel a thing. Then later that same day, I'll end up going more. So basically what MY nurses have to do, is determine when I'm "done" based on quantity, and not only just by what they feel. Sometimes they'll even have to use a second suppository to "get things moving." When it's all said and done, I never feel comfortable (meaning, not being paranoid about having an accident) unless I've gone a certain amount. It ends up being a waiting game. The nurses keep checking, and stimulating, until I "go" that certain amount. It's awful. Regardless, I'm usually always paranoid of accidents. Partly because they have happened randomly, even after a "good" BP, and secondly, because the threat is always there, and the trauma of it happening once, has been enough to keep me forever worried. It's pretty much become my worst fear, that I fear on an almost constant basis.
Before my accident, when I was around twenty, or twenty one, my mother had a scare, thinking she might have Chrone's disease. She ended up having a colonoscopy done, and was diagnosed with IBS (irritable bowel syndrome- aka spastic colon). I had always had bathroom issues myself, often suffering from diarrhea and almost always getting sick, if I was anxious, or upset about something. I decided to get myself checked out, around the same time, and was also diagnosed with IBS. I was given pills, that didn't help, and I stopped taking them. I never found any direct relation to food, or drink, but definitely believe there were psychological triggers. I can remember being sick to my stomach (with the runs) for every major event in my life. Not being unable to use public restrooms, and being highly sensitive about the matter, complicated having spastic colon, and I remember many days that I was doubled over in pain, because I HAD to "go," but couldn't bring myself to use the bathroom, wherever, or around whoever I was with, at the time.
Between my conversation with Mariam, and with my nurse, I got to thinking if maybe it's not so much my hemorrhoids that cause me so much discomfort, and make my bowel program seemingly so hard to manage and control, but perhaps it's the fact that I still have IBS. It's not that I've never had this thought before, but I always ruled it out, given the fact that I know my biggest trigger of my IBS, was always my emotions. I've always assumed, since there is no longer a conscious connection between my brain, and my ability to control my bowels, that IBS too, would no longer be an issue. I figured, if my emotions still ruled my IBS, then theoretically, I'd be able to use anxiety to my advantage, and will myself into needing to go. That most certainly isn't the case. I'm anxious/paranoid about BP specifically, 99% of the time, so based on that alone, I'd be "going" all the time. On the other hand, I wonder if my anxiety and IBS create more gas, and sensations of needing to go, that my body is interpreting as pain, and thus creating all the AD symptoms. It would explain a lot. I'm curious to know if anyone else with a SCI has had experience of being previously diagnosed with IBS, and if he/she has had any similar issues of AD and unexplained problems with BP and/or episodes of incontinence. I'm also curious to ask my doctor what he thinks. Unfortunately, there's no way to know for sure. One frustrating aspect of IBS, is that it's difficult to treat. It's even harder to try and treat something you can't directly feel. I'm grasping at straws, but it's an idea I'm curious I'd like to throw out there, and get some feedback on.
- Posted using BlogPress from my iPad
Monday, October 11, 2010
Gadgets, Gizmos & Technology
I recently read (and posted) an article about Berkley Bionics new "eLEGS" exoskeleton, for paraplegics. I'd heard of, and seen similar prototypes on television shows ( mostly on the Science channel), discussing futuristic military equipment and upcoming medical technology, in addition to this particular article. Being an avid anime fan and science fiction geek, means I'm no stranger to the concept of bio-tech gadgets, likemecha suits, holobands, exoskeletons, android, robotic and avatar like devices. Science fiction is becoming fact, for many of these types of devices. We've begun mixing man with machine, in order to enhance our abilities, entertain and excite our senses, as well as return function, to those who have lost abilities, due to injury, or disease. While I view these technologies as helpful, and interesting, I tend to get frustrated and resentful at the thought of having to rely on machinery, instead of my own physiology. It's one thing to use gadgets for enhancement, or excitement, like video games, simulators, sensory stimulation (like HD tv, surround sound & 3D movies), or even rides. It's entirely different to be dependent on machinery, to move, feel, or function. While I'll admit, it's a first step (no pun intended) towards regaining function, I see gadgets as temporary compromises, and have a limited amount of enthusiasm towards them. Machines are just one more compromise, in a life already saturated with compromises, modifications, adjustments and having to settle, with what I have.
If you're not into gadgets, and technology, you'd probably be amazed to know some of the current technologies that we already process, and/or that are being developed in the here and now. I've seen pacemaker like devices, to assist in breathing (Christopher Reeve used this technology). There are devices that allow people to remotely control their limbs, bowel, bladder, and sexual function. I've also seen devices that actually "plug-in" to a persons brain, to allow them to operate a computer. There are devices that use eye movements to control computers, or machines. There's also a company out there that has developed a gaming system that is controlled by headgear, which recognizes various electrical impulses sent out from the brain. I even saw a prototype for a body suit that can receive sensory stimulation, meant to be worn and connected to the computer, which partners could use to send sensory signals to one another (essentially taking virtual intimacy to whole new level). I find technology, machines and computers fascinating, and enjoy reading and watching about them. However, for as much as I'm intrigued by mechanical engineering and technology, I'm equally frustrated by it. I feel as though machines both liberate and limit us, and get frustrated by the amount of time, energy, money, and brain power that our society invests in them. In the end, what good are machines, if there is no one is able to use them. Why focus on machinery, instead of our own bodies? Shouldn't we discover how we work first? Shouldn't we unravel all the mysteries of ourselves first? I think more emphasis needs to be put on humanity and health. Let's understand how to work with the biology we were born with, and how to fix it, instead of settling for compromises, or worrying about enhancements.
It boggles my mind how much money and time is spent on trying to find answers to questions of curiosity or weapons of destruction. Most space exploration is a huge waste of resources, in terms of practical, tangible knowledge, yet we spend BILLIONS each year on it. Although it's tantalizing to think of discovering other Earth like planets (none of which we have -even remotely close- the technology to actual reach in a single lifetime), or microorganisms deep inside the water, that may, or may not be beneath Jupiter's moon's surface, none of it is practical information. What benefits can humanity hope to gain through this type of research? How can we apply the information we learn from the billions being spent on projects like exploring Europa (Jupiter's moon)? The answer is, we can't. The type of life we hope to find in space is either too far away to reach, or so insignificantly small, that it has nothing to offer us, other than quenching our thirst for knowledge. Sure, there's a ton of interesting mysteries in our universe that are worth answering, but to what extent? Doesn't it seem logical to prioritize our time and energy, and first unravel the mysteries of our own bodies, ourselves? Why is it acceptable that we can't fix the spinal cord, but we can justify diverting resources to building weapons, exploring deep space, or building better gadgets? Shouldn't we ask ourselves how the things we do impact life; how they can improve the quality of life? I don't think it's just, that in the year 2010 people are still suffering with ailments like paralysis and cancer, which have plagued humanity for centuries (probably forever, but we didn't have the technology to detect or manage them). It's alarming to me, that geniuses, like Steven Hawking (especially ironic, in his case, in particular) prefer to use their incredible minds to answer fascinating, yet often low priority riddles, in terms of the concrete impact the information they gather has on everyday life. Don't get me wrong, I know quantum physics and associations like CERN, and NASA do offer us with some practical applications, like satellites, GPS, nuclear fusion, etc.. Unfortunately, a large bulk of effort is spent on impractical priorities, like searching for extraterrestrial life, "God particles," and explanations on dark matter. That's all well and good, but can't we worry about that stuff AFTER we figure out ourselves?
Another reason why I'm not personally jumping for joy (figuratively, of course) about this new technology, is that the Berkley Bionics exoskeleton is designed for paraplegics. You need to have a functioning upper body in order to operate it, which I don't. It's touted as being relatively lightweight in design (compared to similar prototypes), although it includes a leg/foot cast apparatus, two arms poles and a backpack (which I'm assuming is the battery). It looks bulky and cumbersome to me, however let's face it, a wheelchair is no better. The device requires the user to be able to transfer his/her lower extremities into the device, fasten all the straps, put on the backpack, and grab onto the arm poles, all before even being able to stand up. Even so, if I had a functioning upper body, I'd gladly trade in my set of wheels for a suit, regardless. The health benefits of wearing the exoskeleton far outweigh any hassles, that will surely come along with using it. Being able to bear weight on your bones is crucial. After five years of sitting, I'm sure my bones are equivalent to those of a ninety year old woman. Being able to walk , upright also has countless other medical benefits for circulation, and digestion. Despite the bulkiness and awkwardness of having to strap on so much paraphernalia, I'm sure users will have more confidence and self worth, as compared to rolling around it a chair. The one woman quoted in the article, mentions that fact. I own a tilt table, which allows me to bear weight on my bones, but it's no where near as helpful as actual locomotion. Not to mention, in a tilt table, or standing frame, you're strapped in and stationary, so you can't really interact with the environment in any productive sense. Since I have no functional upper body control, my trunk is to weak to remain upright, so it must be strapped down, to avoid me from falling forward. Plus, I have no functional arm/hand control, which makes interacting with my environment a mute point. For paraplegics however, this type of technology is very exciting. It would give people with lower extremity paralysis back much more independence, and dignity. If you watch the video demonstrations of her using the exoskeleton, you see her being able to stand eye level with her best friend, and be able to embrace her, standing up. The medical and therapeutic possibilities are amazing, but things like being able to stand next to a loved one, and hug them are priceless.
Like I said earlier, it's a stepping stone, to giving people back their independence and self confidence.Gadgets are ok, but they'll never be as good as the body I was born with. All the machines in the world can not replace all that paralysis takes away. Having to rely on a machine, is not that much better than having to rely on another person. Dependence, is dependence, no matter how you slice it. Reliance on machinery is a step up from relying on people, because it gives us the illusion of more control, and gives us a boost of confidence, in having the dignity of privacy to handle matters ourselves. However, machines have their own limitations and obstacles. The fact that the exoskeleton will rely on electricity is a key example of limitations. Yes, the user will have more control over assuring that they charge the battery, or have backups. You can control maintenance on a machine, and have reliable back up plans, more so than the unpredictability or control over a human aide. However, machines will only ever be a compromised version of our "God given" abilities. Another example of this is the fact that users of the exoskeletons will be able to walk, but will not be able to feel. The exoskeleton will give paraplegics back locomotion, but not sensation. The exoskeleton will not solve the second biggest (or first most, depending on your point of view) problem of paralysis, which is the lack of feeling. Users will be able to take a step, but unable to feel their feet touching the ground. The exoskeleton solves the problem of getting around, but doesn't even begin to address other aspects of paralysis: incontinence, sexual function, pain and/or numbness. The exoskeleton has a much greater potential to help newly injured people, retain abilities, while the body still possess muscle memory, but will not be able to address those concerns, in people that have been paralyzed for years. That is why, the best "cure" or solution, is always going to be, first and foremost, the reparation of the spinal cord itself. There is just no equal substitute to the biological wiring within our own bodies. That is where the great majority of the research, time and energy needs to be. It'll be nice for some people to get around, in the interim, but please, just give me back my body. I'm happy for those people that will benefit from this technology, and agree that every little bit helps. I'll use whatever I can, to improve my independence, but all I want is my own body. It's not enough to just go through the motions. I don't just want to move; I want to FEEL. I want to be able to truly experience every aspect of walking again. That's part of what's so hard about a spinal cord injury; it's that I KNOW what it's like to run, dance, walk, swim, and ride a bike. I remember what I'm missing, and I want it ALL back. I want to be truly independent, and not have to worry about having to buy replacement parts, rely of batteries, on mechanics to live my life. I want people to see the whole picture, and think about what counts most. Let's focus on the core problem and refocus priorities to the most basic of human necessities, health and independence. Granted, figuring out how to control and repair the central nervous system is highly more complex, than building machines, I get that. However, shouldn't that be all the more reason, for pushing for MORE support, and extra emphasis, on solving the REAL problem?
Related links:
1. Exoskeleton- http://www.wired.com/gadgetlab/2010/10/berkeley-bionics-elegs/
2. Exoskeleton- http://www.disabledandproductive.com/blog-posts/rewalk-system-helps-paraplegics-walk-again/
3. Brain Connection- http://www.sciencecodex.com/the_brain_speaks
4.Incontinence- http://www.gizmag.com/go/7276/
5.Breathing Pacemaker- http://www.averylabs.com/breathing-pacemakers/introduction.html
6. Mind Control- http://www.wired.com/wired/archive/13.03/brain.html
7. Cyber Sex- http://www.pcmag.com/article2/0,2817,36076,00.asp
8. Futuristic Gaming- http://news.bbc.co.uk/2/hi/technology/7254078.stm
If you're not into gadgets, and technology, you'd probably be amazed to know some of the current technologies that we already process, and/or that are being developed in the here and now. I've seen pacemaker like devices, to assist in breathing (Christopher Reeve used this technology). There are devices that allow people to remotely control their limbs, bowel, bladder, and sexual function. I've also seen devices that actually "plug-in" to a persons brain, to allow them to operate a computer. There are devices that use eye movements to control computers, or machines. There's also a company out there that has developed a gaming system that is controlled by headgear, which recognizes various electrical impulses sent out from the brain. I even saw a prototype for a body suit that can receive sensory stimulation, meant to be worn and connected to the computer, which partners could use to send sensory signals to one another (essentially taking virtual intimacy to whole new level). I find technology, machines and computers fascinating, and enjoy reading and watching about them. However, for as much as I'm intrigued by mechanical engineering and technology, I'm equally frustrated by it. I feel as though machines both liberate and limit us, and get frustrated by the amount of time, energy, money, and brain power that our society invests in them. In the end, what good are machines, if there is no one is able to use them. Why focus on machinery, instead of our own bodies? Shouldn't we discover how we work first? Shouldn't we unravel all the mysteries of ourselves first? I think more emphasis needs to be put on humanity and health. Let's understand how to work with the biology we were born with, and how to fix it, instead of settling for compromises, or worrying about enhancements.
It boggles my mind how much money and time is spent on trying to find answers to questions of curiosity or weapons of destruction. Most space exploration is a huge waste of resources, in terms of practical, tangible knowledge, yet we spend BILLIONS each year on it. Although it's tantalizing to think of discovering other Earth like planets (none of which we have -even remotely close- the technology to actual reach in a single lifetime), or microorganisms deep inside the water, that may, or may not be beneath Jupiter's moon's surface, none of it is practical information. What benefits can humanity hope to gain through this type of research? How can we apply the information we learn from the billions being spent on projects like exploring Europa (Jupiter's moon)? The answer is, we can't. The type of life we hope to find in space is either too far away to reach, or so insignificantly small, that it has nothing to offer us, other than quenching our thirst for knowledge. Sure, there's a ton of interesting mysteries in our universe that are worth answering, but to what extent? Doesn't it seem logical to prioritize our time and energy, and first unravel the mysteries of our own bodies, ourselves? Why is it acceptable that we can't fix the spinal cord, but we can justify diverting resources to building weapons, exploring deep space, or building better gadgets? Shouldn't we ask ourselves how the things we do impact life; how they can improve the quality of life? I don't think it's just, that in the year 2010 people are still suffering with ailments like paralysis and cancer, which have plagued humanity for centuries (probably forever, but we didn't have the technology to detect or manage them). It's alarming to me, that geniuses, like Steven Hawking (especially ironic, in his case, in particular) prefer to use their incredible minds to answer fascinating, yet often low priority riddles, in terms of the concrete impact the information they gather has on everyday life. Don't get me wrong, I know quantum physics and associations like CERN, and NASA do offer us with some practical applications, like satellites, GPS, nuclear fusion, etc.. Unfortunately, a large bulk of effort is spent on impractical priorities, like searching for extraterrestrial life, "God particles," and explanations on dark matter. That's all well and good, but can't we worry about that stuff AFTER we figure out ourselves?
Another reason why I'm not personally jumping for joy (figuratively, of course) about this new technology, is that the Berkley Bionics exoskeleton is designed for paraplegics. You need to have a functioning upper body in order to operate it, which I don't. It's touted as being relatively lightweight in design (compared to similar prototypes), although it includes a leg/foot cast apparatus, two arms poles and a backpack (which I'm assuming is the battery). It looks bulky and cumbersome to me, however let's face it, a wheelchair is no better. The device requires the user to be able to transfer his/her lower extremities into the device, fasten all the straps, put on the backpack, and grab onto the arm poles, all before even being able to stand up. Even so, if I had a functioning upper body, I'd gladly trade in my set of wheels for a suit, regardless. The health benefits of wearing the exoskeleton far outweigh any hassles, that will surely come along with using it. Being able to bear weight on your bones is crucial. After five years of sitting, I'm sure my bones are equivalent to those of a ninety year old woman. Being able to walk , upright also has countless other medical benefits for circulation, and digestion. Despite the bulkiness and awkwardness of having to strap on so much paraphernalia, I'm sure users will have more confidence and self worth, as compared to rolling around it a chair. The one woman quoted in the article, mentions that fact. I own a tilt table, which allows me to bear weight on my bones, but it's no where near as helpful as actual locomotion. Not to mention, in a tilt table, or standing frame, you're strapped in and stationary, so you can't really interact with the environment in any productive sense. Since I have no functional upper body control, my trunk is to weak to remain upright, so it must be strapped down, to avoid me from falling forward. Plus, I have no functional arm/hand control, which makes interacting with my environment a mute point. For paraplegics however, this type of technology is very exciting. It would give people with lower extremity paralysis back much more independence, and dignity. If you watch the video demonstrations of her using the exoskeleton, you see her being able to stand eye level with her best friend, and be able to embrace her, standing up. The medical and therapeutic possibilities are amazing, but things like being able to stand next to a loved one, and hug them are priceless.
Like I said earlier, it's a stepping stone, to giving people back their independence and self confidence.Gadgets are ok, but they'll never be as good as the body I was born with. All the machines in the world can not replace all that paralysis takes away. Having to rely on a machine, is not that much better than having to rely on another person. Dependence, is dependence, no matter how you slice it. Reliance on machinery is a step up from relying on people, because it gives us the illusion of more control, and gives us a boost of confidence, in having the dignity of privacy to handle matters ourselves. However, machines have their own limitations and obstacles. The fact that the exoskeleton will rely on electricity is a key example of limitations. Yes, the user will have more control over assuring that they charge the battery, or have backups. You can control maintenance on a machine, and have reliable back up plans, more so than the unpredictability or control over a human aide. However, machines will only ever be a compromised version of our "God given" abilities. Another example of this is the fact that users of the exoskeletons will be able to walk, but will not be able to feel. The exoskeleton will give paraplegics back locomotion, but not sensation. The exoskeleton will not solve the second biggest (or first most, depending on your point of view) problem of paralysis, which is the lack of feeling. Users will be able to take a step, but unable to feel their feet touching the ground. The exoskeleton solves the problem of getting around, but doesn't even begin to address other aspects of paralysis: incontinence, sexual function, pain and/or numbness. The exoskeleton has a much greater potential to help newly injured people, retain abilities, while the body still possess muscle memory, but will not be able to address those concerns, in people that have been paralyzed for years. That is why, the best "cure" or solution, is always going to be, first and foremost, the reparation of the spinal cord itself. There is just no equal substitute to the biological wiring within our own bodies. That is where the great majority of the research, time and energy needs to be. It'll be nice for some people to get around, in the interim, but please, just give me back my body. I'm happy for those people that will benefit from this technology, and agree that every little bit helps. I'll use whatever I can, to improve my independence, but all I want is my own body. It's not enough to just go through the motions. I don't just want to move; I want to FEEL. I want to be able to truly experience every aspect of walking again. That's part of what's so hard about a spinal cord injury; it's that I KNOW what it's like to run, dance, walk, swim, and ride a bike. I remember what I'm missing, and I want it ALL back. I want to be truly independent, and not have to worry about having to buy replacement parts, rely of batteries, on mechanics to live my life. I want people to see the whole picture, and think about what counts most. Let's focus on the core problem and refocus priorities to the most basic of human necessities, health and independence. Granted, figuring out how to control and repair the central nervous system is highly more complex, than building machines, I get that. However, shouldn't that be all the more reason, for pushing for MORE support, and extra emphasis, on solving the REAL problem?
Related links:
1. Exoskeleton- http://www.wired.com/gadgetlab/2010/10/berkeley-bionics-elegs/
2. Exoskeleton- http://www.disabledandproductive.com/blog-posts/rewalk-system-helps-paraplegics-walk-again/
3. Brain Connection- http://www.sciencecodex.com/the_brain_speaks
4.Incontinence- http://www.gizmag.com/go/7276/
5.Breathing Pacemaker- http://www.averylabs.com/breathing-pacemakers/introduction.html
6. Mind Control- http://www.wired.com/wired/archive/13.03/brain.html
7. Cyber Sex- http://www.pcmag.com/article2/0,2817,36076,00.asp
8. Futuristic Gaming- http://news.bbc.co.uk/2/hi/technology/7254078.stm
Tuesday, September 7, 2010
What About Research?
Someone asked me if I've been to the Rutger's Keck Center, here in NJ, in response to my recent blogs. The Keck Center is dedicated to finding a cure to paralysis. Dr. Wise Young is the Founding Director, and holds open house sessions, where he gives updates on their latest research. Dr. Young also pioneered a SCI research program in China, due in part, to all of the restrictions and set-backs in the field, here in the USA. I've been following his work since my accident.
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Sunday, September 5, 2010
Response to Feedback: I'm Not Doing So Good :(
Thank you for your responses to my previous blog ("I'm Not Doing So Good"). My blogs post onto several sites, from Blogger.com so I thought it'd be easiest to post this here, as a separate blog entry. That way I can reply to everyone that left me feedback in one place, versus posting a bunch of separate comments. Besides, I tend to write too much to be accepted in the normal "comment" boxes. >.<
I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.
There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).
Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.
The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.
The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.
My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.
As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.
I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.
There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).
Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.
The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.
The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.
My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.
As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.
Sunday, July 18, 2010
Summer Safety
As you may or may not know, the 5th anniversary if my accident was this past June. I was injured in a swimming accident, which left me paralyzed from my chest down. A split second decision to do a shallow dive changed my life forever. It was a stupid mistake (that thousands of people make every summer) that I'm still paying for, five years later.
I no longer have the ability to care for myself. Paralysis has robbed me of my independence, privacy, career, relationships, dreams and so much more. My accident literally flipped my life upside down overnight. Right now there is no cure to paralysis, so I have to face the reality that I might spend the rest of my life in a wheelchair. I might never walk again, feel most of my body or be able to live without relying on others for my daily needs. It's a hard pill to swallow. Although I have hope for a cure, I have to live for today & deal with what I have now. It's important to me that other people understand how awful paralysis is, and why we should fight for a cure. I use my life as an example of how quickly life can change and hope people can learn from my experience.
According to the Christopher & Dana Reeve Foundation, 6,500 teens end up going to the ER every summer, due to diving accidents. That does not include other summer related injuries, like biking, riding motor cycles, surfing or sports; which are all common causes for spinal cord injuries. Given that the annual rate of spinal cord injury (USA) is about 12,000, that means over half of all spinal cord injuries occur during the summer months. The CDRF estimates that there are approximately 200,000 people currently living (in the United States) with paralysis, due to recreational related spinal cord injuries. I'm one of those people.
Please take the time to learn more about paralysis & support research for a cure. There are many causes of paralysis. Unfortunately, many cases are due disease or preexisting medical condition and can not be avoided or prevented. Most spinal cord injuries can be avoided or prevented. Educate yourself and others of the common causes of spinal cord injuries and be mindful of safety measures that you can take to help prevent yourself and/or others from injury. There are some simple tips that you should know and discuss with any children/young adults in your life. The CDRF Paralysis Resource Center has put together a list for summer safety. Please check it out & share the info with friends & family (http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5283099/k.6B65/Summer_Safety_Checklist.htm?msource=email&auid=6574797). It'll only take five minutes and could potentially save you or a loved one from getting injured. It's something I wish I had been more aware of at the time of my accident. It's so common to feel invincible when you're young and think it's important for everyone to be reminded of how easily a careless mistake can result in a serious injury. If I had read this checklist five years ago, it could have made me more cautious and i could have potentially made better decisions. Who knows? The point is, it never hurts to play things safe.
Thanks for reading & enjoy the rest of your summer!
- Posted using BlogPress from my iPad
I no longer have the ability to care for myself. Paralysis has robbed me of my independence, privacy, career, relationships, dreams and so much more. My accident literally flipped my life upside down overnight. Right now there is no cure to paralysis, so I have to face the reality that I might spend the rest of my life in a wheelchair. I might never walk again, feel most of my body or be able to live without relying on others for my daily needs. It's a hard pill to swallow. Although I have hope for a cure, I have to live for today & deal with what I have now. It's important to me that other people understand how awful paralysis is, and why we should fight for a cure. I use my life as an example of how quickly life can change and hope people can learn from my experience.
According to the Christopher & Dana Reeve Foundation, 6,500 teens end up going to the ER every summer, due to diving accidents. That does not include other summer related injuries, like biking, riding motor cycles, surfing or sports; which are all common causes for spinal cord injuries. Given that the annual rate of spinal cord injury (USA) is about 12,000, that means over half of all spinal cord injuries occur during the summer months. The CDRF estimates that there are approximately 200,000 people currently living (in the United States) with paralysis, due to recreational related spinal cord injuries. I'm one of those people.
Please take the time to learn more about paralysis & support research for a cure. There are many causes of paralysis. Unfortunately, many cases are due disease or preexisting medical condition and can not be avoided or prevented. Most spinal cord injuries can be avoided or prevented. Educate yourself and others of the common causes of spinal cord injuries and be mindful of safety measures that you can take to help prevent yourself and/or others from injury. There are some simple tips that you should know and discuss with any children/young adults in your life. The CDRF Paralysis Resource Center has put together a list for summer safety. Please check it out & share the info with friends & family (http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5283099/k.6B65/Summer_Safety_Checklist.htm?msource=email&auid=6574797). It'll only take five minutes and could potentially save you or a loved one from getting injured. It's something I wish I had been more aware of at the time of my accident. It's so common to feel invincible when you're young and think it's important for everyone to be reminded of how easily a careless mistake can result in a serious injury. If I had read this checklist five years ago, it could have made me more cautious and i could have potentially made better decisions. Who knows? The point is, it never hurts to play things safe.
Thanks for reading & enjoy the rest of your summer!
- Posted using BlogPress from my iPad
Wednesday, June 9, 2010
Acceptance
I often read posts from the Care Cure & Christopher and Dana Reeve Foundation forums. Both websites are dedicated to spinal cord injury and paralysis awareness and research towards finding a cure. Both websites also have active online communities of people living with paralysis, caregivers and medical & mental health professionals. It's helpful to be able to read how other people deal with paralysis and know that there are other people that can understand your situation. I contribute my opinion, information and advice from time to time. I'd encourage anyone effected by paralysis to check out both websites.
The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"
I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.
I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:
I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.
I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).
No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.
Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.
It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.
At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.
Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.
Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.
I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.
I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.
Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.
Sent from my iPad
- Posted using BlogPress from my iPhone
The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"
I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.
I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:
I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.
I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).
No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.
Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.
It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.
At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.
Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.
Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.
I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.
I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.
Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.
Sent from my iPad
- Posted using BlogPress from my iPhone
Wednesday, May 12, 2010
A Matter of Pride??
Living with paralysis is not easy. The smallest tasks that most people take for granted, require help. It'll be five years since my accident, this coming June and there are still aspects of my life that are as hard to cope with as they were back in 2005. My physical wounds only took a few months to heal (what little damage that could), but my mental and emotional wounds still feel fresh sometimes.
I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.
The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.
Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.
Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.
So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."
The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.
The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.
I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.
All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small.
I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.
The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.
Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.
Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.
So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."
The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.
The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.
I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.
All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small.
Friday, February 19, 2010
Pain in The Butt
I haven't been feeling well for a while now. My tolerance for sitting up in my chair has been decreasing, ever since I had that pressure sore on my thigh a couple of years ago. I used to be able to tolerate sitting eight hours (or more) every day. Now I typically feel wiped out after only four hours. Even though I'm paralyzed, with hardly any sensation, my body compensates by presenting me with certain signals: chills, cold sweat, profuse sweating on only one side of my face, tingling sensations, fever and tightness in my chest. The signals are called autonomic dysreflexia (common for people with high injuries like mine), and are my body's way of alerting me to a problem. The bad thing, is the fact that dysreflexic symptoms are secondary symptoms and I have no real way of knowing what the cause is. I tend to go down a mental checklist and try and rule out common possibilities: blocked catheter, wrinkle in clothing, a pressure area, my feet, bowel issues and my position. It's normally one of the things on the list and once it is resolved, the dysreflexic symptoms go away.
Most of the time, dysreflexia is only a minor discomfort, that I've learned to deal with. However, there are rare occasions when we (my caregiver and I) can't figure out the cause or I know the cause, but don't have help nearby. It is especially frustrating when there is nothing to pin it on and I end up feeling sick for long periods of time. In many cases, I think it is caused by urinary tract infections or indigestion. I try to avoid taking antibiotics at all costs, because they reek havoc with my bowels and sometimes cause nausea.The dangerous and/or scary part aboutdysreflexia is the fact that the majority of the symptoms are caused by my blood pressure rising. Since I can't feel the pain my body feels, it elevates my blood pressure and that's what causes the secondary symptoms. If the problem causing the pain or discomfort isn't found, then my pressure will continuously rise and I risk having a stroke. When it gets very high I feel as though I have a vice grip around my ribs, squeezing me and an immense heaviness where my ribcage meets. If you've ever had pneumonia, you are familiar with the feeling, although in my case it has nothing to do with my lungs. I do run low grade fevers quite often; always starting in the late afternoon, after I've been sitting a while. I can tell as soon as they come on, because I begin to feel very lethargic.Thankfully, I haven't had any high fevers in a long time. The first year after my accident I had a few potentially lethal fevers, that hit 106 degrees Fahrenheit or more.
Normally, I chalk up my crumby feelings to my catheter and try not to let it bother me. Lately though, I've been getting the tightness in my chest too often. It forces me to feel as though I have to lay down, because that's the only thing I've found that helps the symptoms subside at all. The tightness doesn't go away until I've laid down awhile. Aside from the discomfort, it's been really annoying not being able to pinpoint the cause. In a lot of cases, even the doctors have no way of knowing why I experience dysreflexic symptoms and they tend to blame it on one another. My urologist is always blaming my bowels, my physiatrist often thinks it's urological and my general doctor usually has no answer. Honestly, I know my body better than all of them and I often feel like it's a waste of time to be seen by doctors, since it's all a guessing game. I find doctors (at least mine) look for pills to solve everything and are quick to write out prescriptions. Most of my doctors are willing to give me prescriptions for specific things, as long as I ask. I'm sure it's because they know that it's impossible (in most cases) to know for sure what wrong with me and they rely on me to help figure out a diagnosis. During my first year post accident, I was easily taking over 20 pills each day. The bulk of my medicine is bowel and/or bladder related. In fact, I ran into problems a couple years back, because I was constantly taking antibiotics forUTIs (urinary tract infections). The antibiotics in turn, caused issues with my bowels and that's what led to my sore. It is so aggravating when the solution to one problem creates a new problem.
People with quadriplegia require bowel regimes or colostomy bags to go to the bathroom. It's a subject I've rarely discussed with anyone, besides my friends who are also paralyzed. Although, I'm not really comfortable talking about it, I think it's important that people learn all aspects about paralysis. I want people to understand exactly what I go through and why it is so crucial that we find a cure. I share things, at the expense of feeling embarrassed, because I want people to see the whole picture. Going to the bathroom (bowel movement) is my least favorite subject and yet, I find my life revolving around the bathroom, these days. What's worst is that I have had issues with using the restroom my whole life. I don't know why and I'm sure psychologists would give me some complex Freudian theory as an explanation. All I know, is that it is a part of life that I've never felt comfortable about. In a way, I feel like it's the epitome of un-ladylike behavior.
I realize that going to the bathroom is not something one can choose to do or not to do and that everyone does it. I've just always seen it as an embarrassing part of life; one aspect that was acceptable for others, but not myself. I put myself through a lot of physical pain through the years because of my issues (paranoia, disgust, embarrassment) because I absolutely could not bring myself to "go" just anywhere. I'd rather have stomach cramps, than use a public restroom or a friend's bathroom. I used to treat going to the bathroom like some covert operation; the objective being not to leave evidence behind. I know it probably sounds silly to most people, never the less, it's hard to change how you feel towards something, especially when there's not much you can do to change it. I still hate going to the bathroom, more so than ever, because I no longer have any privacy. It's like my worst nightmare, having to have someone else assist me in this area. There's also the constant worry over accidents, since I have no control or sensations whatsoever. Having a bowel regime is supposed to keep your body on a schedule and is designed to prevent accidents, however nothing is full proof. I can't even begin to explain the stress related to never knowing or worrying about the fact that your body can decide to do whatever it wants, without warning. It's always in the back of my mind.
Being paralyzed (especially quadriplegic) often requires having people in your face much more than you might want or like. It's hard to have any true privacy when you need someone helping you with ever single aspect of life. Given the fact that I've always been extremely independent, it can feel suffocating at times to hardly ever have time alone. On top of that, there are so many personal hygiene things that adults normally do for themselves that I need help with. At times it can be very embarrassing or uncomfortable accepting help. There are tons of "simple"ADLs (activities of daily living) that I need help with that the average person might not even think about, because they are second nature: shaving, blowing your nose, going to the bathroom, bathing, trimming finger/toe nails, cleaning your ears, dressing, applying cream/lotion, getting an eye lash out of your eye, scratching an itch, brushing your teeth, brushing/styling your hair, applying make up, using a napkin when you eat, changing pads/diapers/soiled clothing, eating and so on and so forth. Under normal circumstances, I wouldn't have dreamed of asking for help with most of the things I mentioned. Being healthy and able to care for one's self is something most people don't think about and take for granted. I'm also guilty of thinking that way, prior to my accident. It wasn't until after my injury that I realized how lucky I was before and how many little things are effected by paralysis. Paralysis has changed my entire perspective on life.
For me, the bowel regime is the ultimate torture and most embarrassing thing that I need help with. It's been over four years since my accident and it still hasn't gotten any easier to deal with having other people involved in such a private aspect of life. The worst part about it, is the fact that I have absolutely no choice in the matter. If I could have some sort of nutrient injection and just give up food, I would. I realize how crazy it sounds, but it's an example I use, to demonstrate how much it bothers me. Food is one of the few pleasures I have left and I'd still give it up, if it meant never having to go to the bathroom again. Unfortunately, I need to eat to survive and my body needs to get rid of the waste. It just stinks (no pun intended) not being able to control the most basic functions. Being a woman adds even more things to the list of things I can no longer control or be able to care for myself. I can't help but think about how unfair it all seems. I sometimes ask God why he/she couldn't give me a little bit of a break. Is it too much to ask to not have a menstrual cycle? I lost it for six months post accident and wish it wouldn't have come back. I mean, so many other functions were lost, why not that one too? It's not like I'm going to be having children anytime soon. Having to have other people help during that time each month ranks second in terms of embarrassment.Is it too much to ask to not have to constantly worry about incontinence? The whole point of a bowel regime is to prevent accidents and yet they still occur from time to time. It's hard to explain how awful I feel, when accidents occur. Most of my aides, nurses and family try to down play it, like it's no big deal, but I have a feeling they'd think differently if it was them.
The entire subject of incontinence upsets me. It is not easy to cope with the knowledge that I have no control over my own body, or that I have to endure a bowel program for as long as I am paralyzed. I won't even consider the idea of having a colostomy bag. It is not an option. I already know that having a colostomy bag would bother me even more than having to go through a bowl program. The thought of having a bag filled with feces strapped to me, makes me sick to my stomach. As it stands, a nurse comes every other day for three hours and I have to take six pills a day, to keep my body functions working on a routine. Although it can be tedious, I feel as though I'm left with no choice, but to grin and bear the situation the way it is. Having a bowel program (I'll try and spare you from as much detail as possible) consists of having another person manually stimulate your body into going to the bathroom. Someone like me (quadriplegic) no longer feels the sensation of needing to go to the bathroom, nor the feeling of going, nor the ability to control the required muscles. The person assisting with the bowel program is in essence, giving your system a jump start to signal it into doing what it needs to do. It is also the assistant's (usually a nurse) job to make sure that the bowel regime was a success, by manually checking to ensure that your body has no more waste it needs to get rid of. If it's done on a set schedule and you take your medication and watch your diet, it's supposed to be pretty consistent and give you the peace of mind that you can go through your day without having to worry. When things are going well (usually only ever lasts a couple of months at best), I do a decent job of coping and try to block out the situation as best I can.
It's frustrating and depressing when I do everything I'm supposed to do and problems arise regardless. It makes me want to scream. Why I am going through all this, if I'm still having to worry or feel on edge?! Not to mention, there are secondary issues that come along with the fear of incontinence that are not only embarrassing, but also unhealthy. As I mentioned early, if incontinence happens too frequently, the person risks having skin breakdown and sores. My latest discovery, is that people with spinal cord injuries are also prone to getting hemorrhoids. Oh joy! Yet another embarrassing thing I can add to my list of things I wish I didn't need help with. I never realized how common hemorrhoids actually are. Apparently, most women get them after childbirth. At this stage in my life I would probably be dealing with them anyway (from having a child), even if I never got injured. The difference now, is that there is no way of getting relief, other than topical treatments, like creams. So although hemorrhoids may be a common problem, it becomes a much more complicated issue for people with paralysis. Unlike the average person, I don't have the luxury of being able to stand or tolerate long periods of time laying on my side. On top of that, the very thing I hate the most (bowel program) is one of the main causes and primary irritant to hemorrhoids. I feel like I can't win.
Some people are better than others at dealing with needing to have help with hygiene and toileting issues. I suppose it all depends on individual personalities and how the person dealt with that aspect of life, prior to their injury. I've always had bathroom hang-ups and being paralyzed just magnifies those feelings ten fold. In general, I find that men are much more laid back about topic. Statistically speaking, there is a greater percentage of men, versus women with spinal cord injuries and the vast majority of my paralyzed friends are men. By comparison, men also seem to enjoy toilet humor and talk more openly about the subject, whether injured or not. Women with spinal cord injuries have additional issues that can add to the stress and depression, often related to paralysis. Men don't have the potential to bear children or the burdens of menstruation. It's heartbreaking to know that I might never experience pregnancy (Technically I can carry a child, but I'd have no sensation and it would be high risk. Not to mention, I'd have no ability to physically care for a baby), breastfeeding or holding my own child. These are things I've dreamed of and imagined, since I was a young girl. Men with spinal cord injuries don't have to deal with all the extra problems that women face. I'm not saying men have it easy. No one living with paralysis has it easy. I'm merely demonstrating the obstacles I face as a paralyzed woman and my difficulties dealing with the care I need.
Not all people with paralysis will agree with me, in terms of how they feel about the care they need. Like I said, each case is unique: every injury, every body, coping skills, treatments and attitude. Despite how poorly or well a person deals with living with paralysis, I'm certain that 100% of the people in the spinal cord injury would give anything to have their health back. I doubt anyone would choose help over the ability to care for one's self independently. I think it is absolutely vital that people understand paralysis, especially given the fact that a spinal cord injury could happen to anyone, at any age.
The things I dream about now, are the most basic abilities that most people never even think about. So many people are wrapped up in trivial problems and materialistic attachments . I think it's important to help others understand how lucky they really are and to help them re-focus their priorities. As embarrassing and disturbing my conversations, blogs or interviews are at times, it is all worth it, if it opens the average person's eyes to what it mean to be paralyzed. When I think about the out pouring of generosity Americans have shown towards issues of human suffering (like Haiti, New Orleans,Darfur , etc.), I know that people will support a cure. I think two of the key factors to curing paralysis are awareness & funding. That is why I feel it is important to be open and honest. It's not about pity. It's about raising public awareness. People need to know the true, everyday obstacles that paralysis poses, so that they we be motivated to find a cure. Sugar coating my life by talking about all the things I can still do will not help bring a cure. Yes, life isn't over after paralysis, but why should I have to settle for compromise for the rest of my life? My injury has taught me to value the core things in life: love, family/friends & health. If I could regain the ability to care for myself, I'd be a happy person the rest of my life.
To learn more about Autonomic Dysreflexia, check out this link: Autonomic Dysreflexia
Most of the time, dysreflexia is only a minor discomfort, that I've learned to deal with. However, there are rare occasions when we (my caregiver and I) can't figure out the cause or I know the cause, but don't have help nearby. It is especially frustrating when there is nothing to pin it on and I end up feeling sick for long periods of time. In many cases, I think it is caused by urinary tract infections or indigestion. I try to avoid taking antibiotics at all costs, because they reek havoc with my bowels and sometimes cause nausea.The dangerous and/or scary part aboutdysreflexia is the fact that the majority of the symptoms are caused by my blood pressure rising. Since I can't feel the pain my body feels, it elevates my blood pressure and that's what causes the secondary symptoms. If the problem causing the pain or discomfort isn't found, then my pressure will continuously rise and I risk having a stroke. When it gets very high I feel as though I have a vice grip around my ribs, squeezing me and an immense heaviness where my ribcage meets. If you've ever had pneumonia, you are familiar with the feeling, although in my case it has nothing to do with my lungs. I do run low grade fevers quite often; always starting in the late afternoon, after I've been sitting a while. I can tell as soon as they come on, because I begin to feel very lethargic.Thankfully, I haven't had any high fevers in a long time. The first year after my accident I had a few potentially lethal fevers, that hit 106 degrees Fahrenheit or more.
Normally, I chalk up my crumby feelings to my catheter and try not to let it bother me. Lately though, I've been getting the tightness in my chest too often. It forces me to feel as though I have to lay down, because that's the only thing I've found that helps the symptoms subside at all. The tightness doesn't go away until I've laid down awhile. Aside from the discomfort, it's been really annoying not being able to pinpoint the cause. In a lot of cases, even the doctors have no way of knowing why I experience dysreflexic symptoms and they tend to blame it on one another. My urologist is always blaming my bowels, my physiatrist often thinks it's urological and my general doctor usually has no answer. Honestly, I know my body better than all of them and I often feel like it's a waste of time to be seen by doctors, since it's all a guessing game. I find doctors (at least mine) look for pills to solve everything and are quick to write out prescriptions. Most of my doctors are willing to give me prescriptions for specific things, as long as I ask. I'm sure it's because they know that it's impossible (in most cases) to know for sure what wrong with me and they rely on me to help figure out a diagnosis. During my first year post accident, I was easily taking over 20 pills each day. The bulk of my medicine is bowel and/or bladder related. In fact, I ran into problems a couple years back, because I was constantly taking antibiotics forUTIs (urinary tract infections). The antibiotics in turn, caused issues with my bowels and that's what led to my sore. It is so aggravating when the solution to one problem creates a new problem.
People with quadriplegia require bowel regimes or colostomy bags to go to the bathroom. It's a subject I've rarely discussed with anyone, besides my friends who are also paralyzed. Although, I'm not really comfortable talking about it, I think it's important that people learn all aspects about paralysis. I want people to understand exactly what I go through and why it is so crucial that we find a cure. I share things, at the expense of feeling embarrassed, because I want people to see the whole picture. Going to the bathroom (bowel movement) is my least favorite subject and yet, I find my life revolving around the bathroom, these days. What's worst is that I have had issues with using the restroom my whole life. I don't know why and I'm sure psychologists would give me some complex Freudian theory as an explanation. All I know, is that it is a part of life that I've never felt comfortable about. In a way, I feel like it's the epitome of un-ladylike behavior.
I realize that going to the bathroom is not something one can choose to do or not to do and that everyone does it. I've just always seen it as an embarrassing part of life; one aspect that was acceptable for others, but not myself. I put myself through a lot of physical pain through the years because of my issues (paranoia, disgust, embarrassment) because I absolutely could not bring myself to "go" just anywhere. I'd rather have stomach cramps, than use a public restroom or a friend's bathroom. I used to treat going to the bathroom like some covert operation; the objective being not to leave evidence behind. I know it probably sounds silly to most people, never the less, it's hard to change how you feel towards something, especially when there's not much you can do to change it. I still hate going to the bathroom, more so than ever, because I no longer have any privacy. It's like my worst nightmare, having to have someone else assist me in this area. There's also the constant worry over accidents, since I have no control or sensations whatsoever. Having a bowel regime is supposed to keep your body on a schedule and is designed to prevent accidents, however nothing is full proof. I can't even begin to explain the stress related to never knowing or worrying about the fact that your body can decide to do whatever it wants, without warning. It's always in the back of my mind.
Being paralyzed (especially quadriplegic) often requires having people in your face much more than you might want or like. It's hard to have any true privacy when you need someone helping you with ever single aspect of life. Given the fact that I've always been extremely independent, it can feel suffocating at times to hardly ever have time alone. On top of that, there are so many personal hygiene things that adults normally do for themselves that I need help with. At times it can be very embarrassing or uncomfortable accepting help. There are tons of "simple"ADLs (activities of daily living) that I need help with that the average person might not even think about, because they are second nature: shaving, blowing your nose, going to the bathroom, bathing, trimming finger/toe nails, cleaning your ears, dressing, applying cream/lotion, getting an eye lash out of your eye, scratching an itch, brushing your teeth, brushing/styling your hair, applying make up, using a napkin when you eat, changing pads/diapers/soiled clothing, eating and so on and so forth. Under normal circumstances, I wouldn't have dreamed of asking for help with most of the things I mentioned. Being healthy and able to care for one's self is something most people don't think about and take for granted. I'm also guilty of thinking that way, prior to my accident. It wasn't until after my injury that I realized how lucky I was before and how many little things are effected by paralysis. Paralysis has changed my entire perspective on life.
For me, the bowel regime is the ultimate torture and most embarrassing thing that I need help with. It's been over four years since my accident and it still hasn't gotten any easier to deal with having other people involved in such a private aspect of life. The worst part about it, is the fact that I have absolutely no choice in the matter. If I could have some sort of nutrient injection and just give up food, I would. I realize how crazy it sounds, but it's an example I use, to demonstrate how much it bothers me. Food is one of the few pleasures I have left and I'd still give it up, if it meant never having to go to the bathroom again. Unfortunately, I need to eat to survive and my body needs to get rid of the waste. It just stinks (no pun intended) not being able to control the most basic functions. Being a woman adds even more things to the list of things I can no longer control or be able to care for myself. I can't help but think about how unfair it all seems. I sometimes ask God why he/she couldn't give me a little bit of a break. Is it too much to ask to not have a menstrual cycle? I lost it for six months post accident and wish it wouldn't have come back. I mean, so many other functions were lost, why not that one too? It's not like I'm going to be having children anytime soon. Having to have other people help during that time each month ranks second in terms of embarrassment.Is it too much to ask to not have to constantly worry about incontinence? The whole point of a bowel regime is to prevent accidents and yet they still occur from time to time. It's hard to explain how awful I feel, when accidents occur. Most of my aides, nurses and family try to down play it, like it's no big deal, but I have a feeling they'd think differently if it was them.
The entire subject of incontinence upsets me. It is not easy to cope with the knowledge that I have no control over my own body, or that I have to endure a bowel program for as long as I am paralyzed. I won't even consider the idea of having a colostomy bag. It is not an option. I already know that having a colostomy bag would bother me even more than having to go through a bowl program. The thought of having a bag filled with feces strapped to me, makes me sick to my stomach. As it stands, a nurse comes every other day for three hours and I have to take six pills a day, to keep my body functions working on a routine. Although it can be tedious, I feel as though I'm left with no choice, but to grin and bear the situation the way it is. Having a bowel program (I'll try and spare you from as much detail as possible) consists of having another person manually stimulate your body into going to the bathroom. Someone like me (quadriplegic) no longer feels the sensation of needing to go to the bathroom, nor the feeling of going, nor the ability to control the required muscles. The person assisting with the bowel program is in essence, giving your system a jump start to signal it into doing what it needs to do. It is also the assistant's (usually a nurse) job to make sure that the bowel regime was a success, by manually checking to ensure that your body has no more waste it needs to get rid of. If it's done on a set schedule and you take your medication and watch your diet, it's supposed to be pretty consistent and give you the peace of mind that you can go through your day without having to worry. When things are going well (usually only ever lasts a couple of months at best), I do a decent job of coping and try to block out the situation as best I can.
It's frustrating and depressing when I do everything I'm supposed to do and problems arise regardless. It makes me want to scream. Why I am going through all this, if I'm still having to worry or feel on edge?! Not to mention, there are secondary issues that come along with the fear of incontinence that are not only embarrassing, but also unhealthy. As I mentioned early, if incontinence happens too frequently, the person risks having skin breakdown and sores. My latest discovery, is that people with spinal cord injuries are also prone to getting hemorrhoids. Oh joy! Yet another embarrassing thing I can add to my list of things I wish I didn't need help with. I never realized how common hemorrhoids actually are. Apparently, most women get them after childbirth. At this stage in my life I would probably be dealing with them anyway (from having a child), even if I never got injured. The difference now, is that there is no way of getting relief, other than topical treatments, like creams. So although hemorrhoids may be a common problem, it becomes a much more complicated issue for people with paralysis. Unlike the average person, I don't have the luxury of being able to stand or tolerate long periods of time laying on my side. On top of that, the very thing I hate the most (bowel program) is one of the main causes and primary irritant to hemorrhoids. I feel like I can't win.
Some people are better than others at dealing with needing to have help with hygiene and toileting issues. I suppose it all depends on individual personalities and how the person dealt with that aspect of life, prior to their injury. I've always had bathroom hang-ups and being paralyzed just magnifies those feelings ten fold. In general, I find that men are much more laid back about topic. Statistically speaking, there is a greater percentage of men, versus women with spinal cord injuries and the vast majority of my paralyzed friends are men. By comparison, men also seem to enjoy toilet humor and talk more openly about the subject, whether injured or not. Women with spinal cord injuries have additional issues that can add to the stress and depression, often related to paralysis. Men don't have the potential to bear children or the burdens of menstruation. It's heartbreaking to know that I might never experience pregnancy (Technically I can carry a child, but I'd have no sensation and it would be high risk. Not to mention, I'd have no ability to physically care for a baby), breastfeeding or holding my own child. These are things I've dreamed of and imagined, since I was a young girl. Men with spinal cord injuries don't have to deal with all the extra problems that women face. I'm not saying men have it easy. No one living with paralysis has it easy. I'm merely demonstrating the obstacles I face as a paralyzed woman and my difficulties dealing with the care I need.
Not all people with paralysis will agree with me, in terms of how they feel about the care they need. Like I said, each case is unique: every injury, every body, coping skills, treatments and attitude. Despite how poorly or well a person deals with living with paralysis, I'm certain that 100% of the people in the spinal cord injury would give anything to have their health back. I doubt anyone would choose help over the ability to care for one's self independently. I think it is absolutely vital that people understand paralysis, especially given the fact that a spinal cord injury could happen to anyone, at any age.
The things I dream about now, are the most basic abilities that most people never even think about. So many people are wrapped up in trivial problems and materialistic attachments . I think it's important to help others understand how lucky they really are and to help them re-focus their priorities. As embarrassing and disturbing my conversations, blogs or interviews are at times, it is all worth it, if it opens the average person's eyes to what it mean to be paralyzed. When I think about the out pouring of generosity Americans have shown towards issues of human suffering (like Haiti, New Orleans,Darfur , etc.), I know that people will support a cure. I think two of the key factors to curing paralysis are awareness & funding. That is why I feel it is important to be open and honest. It's not about pity. It's about raising public awareness. People need to know the true, everyday obstacles that paralysis poses, so that they we be motivated to find a cure. Sugar coating my life by talking about all the things I can still do will not help bring a cure. Yes, life isn't over after paralysis, but why should I have to settle for compromise for the rest of my life? My injury has taught me to value the core things in life: love, family/friends & health. If I could regain the ability to care for myself, I'd be a happy person the rest of my life.
To learn more about Autonomic Dysreflexia, check out this link: Autonomic Dysreflexia
Subscribe to:
Posts (Atom)