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!
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Showing posts with label quality of life. Show all posts
Showing posts with label quality of life. Show all posts
Monday, September 12, 2011
Wednesday, June 8, 2011
So Much For My "Good" Day
This morning I had to shlep up to Newark (an hour drive- and very bad neighborhood), with my mom, to go get my psychiatric evaluation done. Luckily, we didn't hit any rush hour traffic, or get lost on the way. We even got a great parking space, and the facility was very wheel chair accessible. Despite hating getting up early, and the long drive, I'm grateful to Jeanne (the palliative care consultant I've been talking with, for several months now) for referring me to Dr. Shihabuddin. She is not only already affiliated with the VNA, but she also accepts Medicare and has experience working with hospice patients.
Our meeting went very well. She was very objective, and made me feel justified, and validated my reasons, for feeling the way I do. She said she would certainly declare me "mentally competent," which is crucial. That ensures my advanced directive, and DNR will be upheld, and respected, without contention. She also said she did not feel I was clinically depressed. She agreed with me, that my issues are issues of conviction, that they are directly related to my physical condition, and my personal standards for quality of living. It felt so good to hear those words. I just wanted to hug her! Thank you, God, someone who can see my situation, with unbiased eyes, and give me a logical, rational validation. I'm not crazy, nor depressed.
That said, she fully acknowledged the difficulties of my situation. She understands my exhaustion, and frustration, but also my deep care, concern, and worry for those closest to me; my mom especially. She and I discussed the medical implications, of refusing various levels of treatment, and she gave me several medical recommendations, in terms of my medication, and hospice care (if/when I need it). She also took the time, to include mom in the dialog, and explained her diagnostic evaluation to mom, stating that my issues are a matter principle, and influenced by physical suffering, not depression. She acknowledged how hard this all must be for mom, and explained that it was important I have this evaluation done, because no matter how badly I'm suffering, there will always be the concern, on the part of my doctors, that my family might try to fight my wishes, or sue after my demise. Mom said although it makes her terribly sad, to think about losing me, she would respect my choices. I already knew that, but I felt relieved after our meeting.
Emotionally, it was a rough morning, but productive, and necessary. I am at peace with my decision, to no longer wish to be hospitalized, or take antibiotics. I'm tired of fighting. I feel like if I get sick, my body will either fight it, or it won't. If I'm "meant" to live, I will, as long as I possibly can. Like I explained to my mom, and Dr. Shihabuddin, ideally I will get sick, and that will be out of my control. Whether to treat it, or not, is a mute point, for me. I rather not have to resort to refusing food/water, to hasten my own death, but if I get sick, I'm hopping on the train out of here. I'm satisfied with what I've accomplished, given my situation, and I'm tired of being sick. I feel like I've had one foot in the grave, for six years now. I've been cheating death, through medicine, and unnatural, painful treatments, for the sake of my loved ones, and at a terrible emotional and physical price. Dr. Shihabuddin recognized the fact (I'm grateful) that living for the sake of others, sacrificing my own happiness, and against my will, can not be sustained forever. When the time comes, that I can't bear this life another day, I'm ready to go.
After leaving Newark, I decided I wanted to go clothes shopping. I had thought about buying a few new things for the summer, the other night, but decided against it. Shopping for clothes online is tough, cause women's clothing sizes are so inconsistent. I have clothes in my wardrobe ranging from extra small, to large. Many times I end up having to send things back, and forth through the mail. I figured, since it was still early in the day, and I was feeling relatively comfortable, we might as well swing by "Mandee's" on the way home.
The store is a favorite of mine, and close by my old apartment. As usual, it was bittersweet, being in my old stomping grounds. I always feel a twinge of pain, rolling into a place, I once walked in. Before my accident, I was making good money, with minimal bills. I was definitely a bit of a shopaholic (no debt though), and clothes have always been a weakness. I used to hit Mandee's once every couple of months. I'd spend hours, trying on STACKS of outfits. I can remember walking back to the dressing rooms, my arms so full of clothes, I could barely cary it all. I loved dressing up, and buying new clothes.
My wardrobe is still pretty much busting at the seams (no pun intended), despite giving away bags, and bags full of my "pre-accident" clothes, that I can no longer wear (short skirts, shorts, bathing suits, short dresses, etc), or have no occasion to (business suits, cocktail dresses, clubbing clothes, etc). I've given away countless pairs of jeans, high heel shoes, skirts, you name it. Most of my wardrobe now, consists of easy to wear (and put on me) casual stuff, like baby doll tee shirts, and sweats, or stretch pants. I seldom go out, and have few occasions to dress up anymore. I pretty much dress the way I used to dress, to go the gym, with the rare exception to my trips outside. Even so, my draws are still over flowing, and my walk-in closet is packed.
Today was like I said, bittersweet, but also fun. No matter how awkward I might feel, being pushed around, not being able to easily access the whole store (clothing stores are always too crowded with racks, and hard to manuever in a wheelchair), or not being able to try clothes on, there is still that piece of me that enjoys it. We probably spent an hour, looking through racks of clothes, and I ended up with two new skirts, a pair of capris, six new shirts, and two new pairs of sandals. I'm officially ready for the summer; if I actually push myself to go out.
After shopping, mom and I stopped at Wendy's for lunch. I love fast food (although my stomach & hips might not agree), so it's always a welcomed treat. I try to choose small portions. It was yummy. All in all, it was a shaping up to have been a rare "good day." I don't get many of those anymore.
I should've known better, not to jinx myself. My good mood was shattered, a few hours ago, when my sister decided to open up today's mail. We had had a routine maintenance inspection, of our apartment, yesterday. Today we got a letter, citing us for a pet violation. Apparently, the complex (we live in a "luxury" apartment complex) has a "two pet" maximum, that we never realized. As it is, I have to pay $50 rent, per pet, per month. That's on top of the non-refundable $350 I had to initially shell out, for each of them.
When my ex-roommate Steve decided to move, and my backup roommate bailed out last minute, three years ago, my little sister came to my rescue, and moved in with me. She had already had a dog, Precious, from before my accident. I was more than happy, to have her join us. Shortly after they moved in, I adopted my cat Tommy. I honestly never realized there was any limit, especially given the fact that I am paying rent for them. I mean between the non-refundable fees, and monthly rent, I have more than covered for any damages they might create. The thing is, they're both well cared for, and neither of them is destructive.
When we got our second dog, Naama (mini-pin) I admittedly, didn't report her. Frankly speaking, because I'm on a fixed income, and was hoping not to have to pay another $50 per month. It has finally caught up with me, thanks to this recent inspection. I would've never adopted her, if I knew about the rule. However, now I'm totally attached to her. She's the closet thing I have to a kid. She's my baby, and I love her.
The complex sent us two conflicting letters, that have left me perplexed, and totally bummed out. One letters says, congratulations on your new dog, please register her on your lease, and that they will begin charging me, the $50 pet fee, on my upcoming statements. The other letter says, we're in violation, and must get rid of one of my pets. Naturally, I'm heartbroken.
I contacted my lawyer, to see if there were some way I could fight it, but he says they have the right to enforce it, if it's in my lease. So, I decided to resort to old fashioned begging. I wrote them a letter, admitting my error, and said I was sorry. I also explained the fact that I am quadriplegic, and practically bed bound. I told them the truth, that my pets are one of the few things that bring me joy, and comfort. I said that my animals were not destructive, and that I'd be more than willing to pay the extra fee. I pointed out the fact, that they have therapeutic value for me, and that I could ask my doctor to write something, to that effect. It is the absolute truth, that they improve my quality of life. I'm hoping and praying that whoever reads my letter, will be compassionate, and willing to make the exception.
So much for my "good" day. Now I'm going to be anxiously stressing out, until I receive their answer. If we do have to put one of the animals up for adoption, we've decided on Tommy. It makes me so sad, to think about losing him. He's such a good, unique, smart, funny cat. I really love him.
- Posted using BlogPress from my iPad
Our meeting went very well. She was very objective, and made me feel justified, and validated my reasons, for feeling the way I do. She said she would certainly declare me "mentally competent," which is crucial. That ensures my advanced directive, and DNR will be upheld, and respected, without contention. She also said she did not feel I was clinically depressed. She agreed with me, that my issues are issues of conviction, that they are directly related to my physical condition, and my personal standards for quality of living. It felt so good to hear those words. I just wanted to hug her! Thank you, God, someone who can see my situation, with unbiased eyes, and give me a logical, rational validation. I'm not crazy, nor depressed.
That said, she fully acknowledged the difficulties of my situation. She understands my exhaustion, and frustration, but also my deep care, concern, and worry for those closest to me; my mom especially. She and I discussed the medical implications, of refusing various levels of treatment, and she gave me several medical recommendations, in terms of my medication, and hospice care (if/when I need it). She also took the time, to include mom in the dialog, and explained her diagnostic evaluation to mom, stating that my issues are a matter principle, and influenced by physical suffering, not depression. She acknowledged how hard this all must be for mom, and explained that it was important I have this evaluation done, because no matter how badly I'm suffering, there will always be the concern, on the part of my doctors, that my family might try to fight my wishes, or sue after my demise. Mom said although it makes her terribly sad, to think about losing me, she would respect my choices. I already knew that, but I felt relieved after our meeting.
Emotionally, it was a rough morning, but productive, and necessary. I am at peace with my decision, to no longer wish to be hospitalized, or take antibiotics. I'm tired of fighting. I feel like if I get sick, my body will either fight it, or it won't. If I'm "meant" to live, I will, as long as I possibly can. Like I explained to my mom, and Dr. Shihabuddin, ideally I will get sick, and that will be out of my control. Whether to treat it, or not, is a mute point, for me. I rather not have to resort to refusing food/water, to hasten my own death, but if I get sick, I'm hopping on the train out of here. I'm satisfied with what I've accomplished, given my situation, and I'm tired of being sick. I feel like I've had one foot in the grave, for six years now. I've been cheating death, through medicine, and unnatural, painful treatments, for the sake of my loved ones, and at a terrible emotional and physical price. Dr. Shihabuddin recognized the fact (I'm grateful) that living for the sake of others, sacrificing my own happiness, and against my will, can not be sustained forever. When the time comes, that I can't bear this life another day, I'm ready to go.
After leaving Newark, I decided I wanted to go clothes shopping. I had thought about buying a few new things for the summer, the other night, but decided against it. Shopping for clothes online is tough, cause women's clothing sizes are so inconsistent. I have clothes in my wardrobe ranging from extra small, to large. Many times I end up having to send things back, and forth through the mail. I figured, since it was still early in the day, and I was feeling relatively comfortable, we might as well swing by "Mandee's" on the way home.
The store is a favorite of mine, and close by my old apartment. As usual, it was bittersweet, being in my old stomping grounds. I always feel a twinge of pain, rolling into a place, I once walked in. Before my accident, I was making good money, with minimal bills. I was definitely a bit of a shopaholic (no debt though), and clothes have always been a weakness. I used to hit Mandee's once every couple of months. I'd spend hours, trying on STACKS of outfits. I can remember walking back to the dressing rooms, my arms so full of clothes, I could barely cary it all. I loved dressing up, and buying new clothes.
My wardrobe is still pretty much busting at the seams (no pun intended), despite giving away bags, and bags full of my "pre-accident" clothes, that I can no longer wear (short skirts, shorts, bathing suits, short dresses, etc), or have no occasion to (business suits, cocktail dresses, clubbing clothes, etc). I've given away countless pairs of jeans, high heel shoes, skirts, you name it. Most of my wardrobe now, consists of easy to wear (and put on me) casual stuff, like baby doll tee shirts, and sweats, or stretch pants. I seldom go out, and have few occasions to dress up anymore. I pretty much dress the way I used to dress, to go the gym, with the rare exception to my trips outside. Even so, my draws are still over flowing, and my walk-in closet is packed.
Today was like I said, bittersweet, but also fun. No matter how awkward I might feel, being pushed around, not being able to easily access the whole store (clothing stores are always too crowded with racks, and hard to manuever in a wheelchair), or not being able to try clothes on, there is still that piece of me that enjoys it. We probably spent an hour, looking through racks of clothes, and I ended up with two new skirts, a pair of capris, six new shirts, and two new pairs of sandals. I'm officially ready for the summer; if I actually push myself to go out.
After shopping, mom and I stopped at Wendy's for lunch. I love fast food (although my stomach & hips might not agree), so it's always a welcomed treat. I try to choose small portions. It was yummy. All in all, it was a shaping up to have been a rare "good day." I don't get many of those anymore.
I should've known better, not to jinx myself. My good mood was shattered, a few hours ago, when my sister decided to open up today's mail. We had had a routine maintenance inspection, of our apartment, yesterday. Today we got a letter, citing us for a pet violation. Apparently, the complex (we live in a "luxury" apartment complex) has a "two pet" maximum, that we never realized. As it is, I have to pay $50 rent, per pet, per month. That's on top of the non-refundable $350 I had to initially shell out, for each of them.
When my ex-roommate Steve decided to move, and my backup roommate bailed out last minute, three years ago, my little sister came to my rescue, and moved in with me. She had already had a dog, Precious, from before my accident. I was more than happy, to have her join us. Shortly after they moved in, I adopted my cat Tommy. I honestly never realized there was any limit, especially given the fact that I am paying rent for them. I mean between the non-refundable fees, and monthly rent, I have more than covered for any damages they might create. The thing is, they're both well cared for, and neither of them is destructive.
When we got our second dog, Naama (mini-pin) I admittedly, didn't report her. Frankly speaking, because I'm on a fixed income, and was hoping not to have to pay another $50 per month. It has finally caught up with me, thanks to this recent inspection. I would've never adopted her, if I knew about the rule. However, now I'm totally attached to her. She's the closet thing I have to a kid. She's my baby, and I love her.
The complex sent us two conflicting letters, that have left me perplexed, and totally bummed out. One letters says, congratulations on your new dog, please register her on your lease, and that they will begin charging me, the $50 pet fee, on my upcoming statements. The other letter says, we're in violation, and must get rid of one of my pets. Naturally, I'm heartbroken.
I contacted my lawyer, to see if there were some way I could fight it, but he says they have the right to enforce it, if it's in my lease. So, I decided to resort to old fashioned begging. I wrote them a letter, admitting my error, and said I was sorry. I also explained the fact that I am quadriplegic, and practically bed bound. I told them the truth, that my pets are one of the few things that bring me joy, and comfort. I said that my animals were not destructive, and that I'd be more than willing to pay the extra fee. I pointed out the fact, that they have therapeutic value for me, and that I could ask my doctor to write something, to that effect. It is the absolute truth, that they improve my quality of life. I'm hoping and praying that whoever reads my letter, will be compassionate, and willing to make the exception.
So much for my "good" day. Now I'm going to be anxiously stressing out, until I receive their answer. If we do have to put one of the animals up for adoption, we've decided on Tommy. It makes me so sad, to think about losing him. He's such a good, unique, smart, funny cat. I really love him.
- Posted using BlogPress from my iPad
Tuesday, May 31, 2011
"How To Die In Oregon"
I just watched the HBO documentary, "How To Die In Oregon." It is a film about the debate, over whether or not people in the United States should have the right to "die with dignity," through physician assisted deaths. The documentary crew follows the lives, and deaths of several individuals, and their families. It presents clear arguments for why the right should be given to every citizen, and gives a very intimate view into the lives, and decision making process of the people involved, and what the process is like, in the state of Oregon. It also discusses opposing views, and the struggle involved, in getting legislation, like that in Oregon, passed in Washington.
One of the people the documentary follows, is a woman named Nancy. Nancy's husband had passed away, from cancer in his brain and spinal cord. At the time he was diagnosed with the illness (around 2006 I think), they were both Washington state residents. There was not much that doctors could do for him, in terms of treatment, and his prognosis was very grave. The disease progressed rapidly, and he lost his ability to care for himself. He suffered horribly, both physically and mentally, due to his degenerative condition, and his loss of freedom, and independence. He hated needing to be cared or, and wanted a peaceful, dignified death. At the time however, physician assisted suicide was illegal in his home state. He inquired about moving to Oregon, because he knew it was legal there, but his doctors told him he wouldn't be alive long enough to be able to establish residency there, or be able to give himself the lethal dose of medicine. He resigned himself to staying in his state. His wife Nancy described his final days being filled with pain, and suffering. One of his dying wishes, to her, was to work towards making physician assisted death legal in Washington, so that others wouldn't have to suffer the same way.
Nancy worked tirelessly, volunteering to speak, giving interviews, and making phone calls, to share her husband's story with the public, and to help raise awareness, and support, for the "Death With Dignity Act," which eventually passed, and was instituted in Washington, in 2008. During one of the many speaking engagements the documentary chronicles, the interviewer asked Nancy something to the effect of, "Death with dignity, the other side would call it assisted suicide. Is it assisted suicide?" She replied, "No. It's offense to me, to call it a suicide. Suicide is something someone does, who is otherwise physically healthy, and has their life ahead of them, but is clinically depressed and does not want to live." In another segment, she explains to a crowd of people, that although she and her husband were both raised Catholic, he (and obviously she agrees) didn't think it was right for the government, or any religious leader, to dictate how much someone should have to suffer. I agree with her opinions, whole heartedly.
The documentary discusses the Hippocratic oath, that doctors take, to "do no harm," and presents arguments from both sides. The film is clearly "pro" euthanasia rights, however it does offer examples, and give and take dialogue, from both sides of the issue. Some of the opponents to physician assisted death, claim that enacting such laws, is essentially giving the government the power to classify who is "fit" to live, versus those whose care might seem otherwise burdensome, or costly. I think this line of thinking is completely misguided. No one is saying "everyone with such, and such diagnosis, should be euthanized."
Giving citizens a dignified alternative, to assured suffering, has nothing to do with placing judgement on individuals. Everyone should have the right to determine what he/she considers to be a worthwhile life. Not everyone with a terminal diagnosis would choose to cut their life short. Not everyone that is disabled finds being dependent on others as painful, humiliating, or degrading. Everyone has their own unique threshold for suffering, and what he/she might classify as a life worth living. The point is, those people who do have a terminal illness, or incurable chronic illness, should have the right to determine when they've suffered enough. We as society, as loving, compassionate citizens, should recognize that in some cases, there are no medical answers or relief to suffering, but death itself. We should not demonize people for not wanting to suffer, or doctors for wanting to help ease someone's suffering.
If doctors have no methods to ease someone's physical illness, and that person is guaranteed to have a future filled with crippling limitations, lack of independence and/or physical suffering, than in my opinion, it is DOING HARM, not to offer a peaceful alternative. It is not right to say, you must suffer, because we can't help you. If death is a certainty, why prolong the suffering, and poor quality of life?
The documentary shows a man named Randy, dying from prostate cancer. In the film, he talks about his outrage over receiving a denial letter for more chemotherapy. Randy had already had several doses, but the treatments had been ineffective. He was too poor to pay for the treatments out of pocket, and the state of Oregon was refusing to pay for more treatments, because based on his diagnosis they felt that further treatments would only be futile (aka a waste of tax payer money), and were only offering him palliative, or "comfort care." He showed the rejection letter, which outlined the comfort care measures, that he COULD qualify for, given his condition. In the list, was the option of physician assisted death. He was completely irate, accusing Oregon of "putting a price on his life", and felt as though he was being pressured into dying. After going public with his story, the state agreed to pay for more radiation treatments. Despite treatment, he died a month later.
Giving people options, is totally different than imposing something on people. I don't think Oregon was wrong for denying Randy treatment. Some cases are lost causes. I receive all my medical benefits through the government, (Medicare and Medicaid) and believe whole heartedly that the government has the right to approve, or deny treatment, if they have clear evidence that it is unnecessary. As it is, there is a ton of price gauging, abuse of the system, and wasted money.
A perfect example, in my life, is receiving physical therapy. Due to my injury (C4/C5 complete), I was left completely paralyzed, with no hope of recovering any sensation, or functional ability, below my injury level. Directly after my accident, I received three months of inpatient acute, physical and occupational rehabilitation, and then six months of outpatient subacute rehab. For the first year and a half, after my accident I lived in and out of the hospital, and nursing facilities. During my stay in the nursing home, I received PT/OT five days a week (about a half hour of range of motion stretches, and exercises, done with the assistance of a physical therapist). Once I moved out, into my own apartment, the state paid to have a PT/OT therapist come to my home and teach my aides how to do range of motion exercises. I have been living here for over four years, and have only had PT/OT come to my home twice. The government will not approve me for outpatient PT/OT, because they feel, based on my diagnosis, anyone can be trained to do simple range of motion exercise with me. My prognosis, does not include "getting better," or regaining mobility, therefore they are justified in not wanting to pay for services that would be a waste of time and money. It doesn't make me angry. It makes sense.
I WISH I had a peaceful alternative to end this life. I don't think Oregon officials were wrong for denying the man in the film treatment. Clearly, he was terminally ill. Offering him the OPTION of a physician assisted death, was just that; an option. He had every right, not to exercise his right to die. In his opinion, his life was worth fighting for. That's all well and good, but there are cases where treatment is futile. If the tax payers are footing the bill, the government has the right to say whether or not they are going to pay. If you can afford it, and feel extra treatments are worth the cost,and risk, than more power to you. No one should tell you how you spend your own money (taxes & benefits aside). Just as, no one should force suffering upon others.
I HATE the life that my paralysis has forced onto me. I do not think it's right, or humane, to force me to live this way. If I lived in Oregon, or Washington, I would most certainly exercise the right to die with dignity. I'm not sure if I'd qualify, because I can't technically administer the medicine to myself. I'm a little fuzzy on the law, even after watching the film. They clearly point out that such legislation is feasible, because the patient is giving themselves the medicine, versus a doctor giving a lethal injection. However, everyone in the film, clearly had other people prepare the mixture, and help them. All they had to do was physically be able to ingest the concoction, by mouth. I could do that, but am unsure if my situation would be approved.
Most of society, and my loved ones don't like to admit the fact that paralysis (at high, complete levels- such as mine) is no different than a terminal illness. I have absolutely no means of self sufficiency. I am FORCED into accepting help for EVERY aspect of normal, daily life: to eat, go to the bathroom, dress, bathe, etc. I have two options: accept help and prolong my life, and therefore my own suffering, or reject help, and suffer a long drawn out, painful death. That is an incredibly harsh, cruel position to be in.
I'm not saying everyone with a spinal cord injury, or paralysis should want to die, or that they should be euthanized. All I'm saying is that each case should be judged based on the individual, and his/her own definition of what is a quality life. There should be an alternative, peaceful way to end someone's suffering. The choice, and decision to exercise that option, should be left to the individual. Not everyone will choose to die.
I for one, would welcome a peaceful option. For me, being completely paralyzed has been hell on earth. I absolutely detest needing help, and having no privacy. My physiology, (having IBS) has complicated my situation, and creates a lot of pain, and discomfort. I'm forced into taking dozens of pills, and into enduring horrible treatments (like bowel program-where a nurse needs to manually stimulate my body into evacuating stool), that create as much discomfort as they alleviate, if not more. There is no cure in sight for me, and very little that doctors can do to get rid of the autonomic dysreflexia, I deal with on a daily basis. My tolerance for sitting is poor, and I'm left practically bed bound. I am literally a prisoner within my own body. Right now, my only means of ending my suffering, is to reject the help that is given to me every day. Rejecting help will ensure my death 100%, because I can not feed myself, or get something to drink, without assistance. I can not go to the bathroom, or clean myself. Without help, my death will be assured, in only a matter of time.
In other words, my only option of ending my suffering (which in and of itself is a certainty, given my body, and my condition) is to slowly starve myself to death, or hope to die from untreated infection. Both "options" will result in my death, but will most likely be very painful, and drawn out, and incredibly hard for my loved ones to witness. For me, the best "help" for me, would be a dignified death. I hate that I am so trapped, and so limited by the law. It pisses me off, that religious "morals" and belief systems are imposed on me, and force me to suffer. My life has come to a point, where living equates to suffering. The scale has tipped, irreversibly, to being a life of overwhelming suffering, versus overall good. I truly wish I had the right to die peacefully, and quickly. I'd take that option in a heartbeat.
The documentary also follows a woman, named Cody, who was dying from cancer in her liver. Throughout the film, it shows her with her family, and each of their perspective's about her choice to exercise her right to die. For a little while, she had a period of feeling good, and had outlived her prognosis. She knew that she had the pills, waiting for her, but she chose life. She explained that she knew she didn't HAVE to ever take the pills, if she didn't want to, but that she drew peace and comfort from knowing, that she could spare herself from eventual suffering. She knew she was going to die, either way, but she didn't want to let her illness bring her to the point where she could no longer care for herself.
Naturally, Cody's family was sad, that she was going to die, but they were also very understanding, and supportive of her decision to hasten her own death. She involved them in her thought process, and clearly outlined what SHE considered to be a quality life, and how far she was WILLING to continue to suffer. Thanks to her having the option to die with dignity, she and her loved ones were able to prepare for death, together. They were able to enjoy her last days together, and say their goodbyes to one another, while she was still relatively able to care for herself, and was able to die with pride, and grace. She was able to spare herself the suffering, of added pain and the humiliation, of needing to be cared for (I can relate to her feelings), and spare her family the cost, and the physical & emotional burdens of having to watch her suffer and have to care for her.
Some people can tolerate more pain than others. Some people don't mind being dependent. Some people aren't bothered by vanities, modesty, or pride. Everyone is different. Every case is unique. For those people, whose death is inevitable, without medical intervention, or for those of people living with incurable, painful conditions, there should be a humane alternative, to forced suffering. Giving people the right to die, is not the same as killing people. The choice should remain with the individual that is faced with the suffering. Suffering shouldn't be imposed, or expected, just because there isn't a cure, or viable treatment. We treat our pets more humanely, than we treat our fellow man. I agree with the right to die with dignity, and wish more people would open their eyes, hearts and minds. I wish more states would free their citizens from the oppression of religious beliefs, over law, and give citizens the right to decide how much/little suffering they are willing to endure, and give doctors the right to uphold their oaths, to help ease suffering; even when life itself is suffering.
- Posted using BlogPress from my iPad
One of the people the documentary follows, is a woman named Nancy. Nancy's husband had passed away, from cancer in his brain and spinal cord. At the time he was diagnosed with the illness (around 2006 I think), they were both Washington state residents. There was not much that doctors could do for him, in terms of treatment, and his prognosis was very grave. The disease progressed rapidly, and he lost his ability to care for himself. He suffered horribly, both physically and mentally, due to his degenerative condition, and his loss of freedom, and independence. He hated needing to be cared or, and wanted a peaceful, dignified death. At the time however, physician assisted suicide was illegal in his home state. He inquired about moving to Oregon, because he knew it was legal there, but his doctors told him he wouldn't be alive long enough to be able to establish residency there, or be able to give himself the lethal dose of medicine. He resigned himself to staying in his state. His wife Nancy described his final days being filled with pain, and suffering. One of his dying wishes, to her, was to work towards making physician assisted death legal in Washington, so that others wouldn't have to suffer the same way.
Nancy worked tirelessly, volunteering to speak, giving interviews, and making phone calls, to share her husband's story with the public, and to help raise awareness, and support, for the "Death With Dignity Act," which eventually passed, and was instituted in Washington, in 2008. During one of the many speaking engagements the documentary chronicles, the interviewer asked Nancy something to the effect of, "Death with dignity, the other side would call it assisted suicide. Is it assisted suicide?" She replied, "No. It's offense to me, to call it a suicide. Suicide is something someone does, who is otherwise physically healthy, and has their life ahead of them, but is clinically depressed and does not want to live." In another segment, she explains to a crowd of people, that although she and her husband were both raised Catholic, he (and obviously she agrees) didn't think it was right for the government, or any religious leader, to dictate how much someone should have to suffer. I agree with her opinions, whole heartedly.
The documentary discusses the Hippocratic oath, that doctors take, to "do no harm," and presents arguments from both sides. The film is clearly "pro" euthanasia rights, however it does offer examples, and give and take dialogue, from both sides of the issue. Some of the opponents to physician assisted death, claim that enacting such laws, is essentially giving the government the power to classify who is "fit" to live, versus those whose care might seem otherwise burdensome, or costly. I think this line of thinking is completely misguided. No one is saying "everyone with such, and such diagnosis, should be euthanized."
Giving citizens a dignified alternative, to assured suffering, has nothing to do with placing judgement on individuals. Everyone should have the right to determine what he/she considers to be a worthwhile life. Not everyone with a terminal diagnosis would choose to cut their life short. Not everyone that is disabled finds being dependent on others as painful, humiliating, or degrading. Everyone has their own unique threshold for suffering, and what he/she might classify as a life worth living. The point is, those people who do have a terminal illness, or incurable chronic illness, should have the right to determine when they've suffered enough. We as society, as loving, compassionate citizens, should recognize that in some cases, there are no medical answers or relief to suffering, but death itself. We should not demonize people for not wanting to suffer, or doctors for wanting to help ease someone's suffering.
If doctors have no methods to ease someone's physical illness, and that person is guaranteed to have a future filled with crippling limitations, lack of independence and/or physical suffering, than in my opinion, it is DOING HARM, not to offer a peaceful alternative. It is not right to say, you must suffer, because we can't help you. If death is a certainty, why prolong the suffering, and poor quality of life?
The documentary shows a man named Randy, dying from prostate cancer. In the film, he talks about his outrage over receiving a denial letter for more chemotherapy. Randy had already had several doses, but the treatments had been ineffective. He was too poor to pay for the treatments out of pocket, and the state of Oregon was refusing to pay for more treatments, because based on his diagnosis they felt that further treatments would only be futile (aka a waste of tax payer money), and were only offering him palliative, or "comfort care." He showed the rejection letter, which outlined the comfort care measures, that he COULD qualify for, given his condition. In the list, was the option of physician assisted death. He was completely irate, accusing Oregon of "putting a price on his life", and felt as though he was being pressured into dying. After going public with his story, the state agreed to pay for more radiation treatments. Despite treatment, he died a month later.
Giving people options, is totally different than imposing something on people. I don't think Oregon was wrong for denying Randy treatment. Some cases are lost causes. I receive all my medical benefits through the government, (Medicare and Medicaid) and believe whole heartedly that the government has the right to approve, or deny treatment, if they have clear evidence that it is unnecessary. As it is, there is a ton of price gauging, abuse of the system, and wasted money.
A perfect example, in my life, is receiving physical therapy. Due to my injury (C4/C5 complete), I was left completely paralyzed, with no hope of recovering any sensation, or functional ability, below my injury level. Directly after my accident, I received three months of inpatient acute, physical and occupational rehabilitation, and then six months of outpatient subacute rehab. For the first year and a half, after my accident I lived in and out of the hospital, and nursing facilities. During my stay in the nursing home, I received PT/OT five days a week (about a half hour of range of motion stretches, and exercises, done with the assistance of a physical therapist). Once I moved out, into my own apartment, the state paid to have a PT/OT therapist come to my home and teach my aides how to do range of motion exercises. I have been living here for over four years, and have only had PT/OT come to my home twice. The government will not approve me for outpatient PT/OT, because they feel, based on my diagnosis, anyone can be trained to do simple range of motion exercise with me. My prognosis, does not include "getting better," or regaining mobility, therefore they are justified in not wanting to pay for services that would be a waste of time and money. It doesn't make me angry. It makes sense.
I WISH I had a peaceful alternative to end this life. I don't think Oregon officials were wrong for denying the man in the film treatment. Clearly, he was terminally ill. Offering him the OPTION of a physician assisted death, was just that; an option. He had every right, not to exercise his right to die. In his opinion, his life was worth fighting for. That's all well and good, but there are cases where treatment is futile. If the tax payers are footing the bill, the government has the right to say whether or not they are going to pay. If you can afford it, and feel extra treatments are worth the cost,and risk, than more power to you. No one should tell you how you spend your own money (taxes & benefits aside). Just as, no one should force suffering upon others.
I HATE the life that my paralysis has forced onto me. I do not think it's right, or humane, to force me to live this way. If I lived in Oregon, or Washington, I would most certainly exercise the right to die with dignity. I'm not sure if I'd qualify, because I can't technically administer the medicine to myself. I'm a little fuzzy on the law, even after watching the film. They clearly point out that such legislation is feasible, because the patient is giving themselves the medicine, versus a doctor giving a lethal injection. However, everyone in the film, clearly had other people prepare the mixture, and help them. All they had to do was physically be able to ingest the concoction, by mouth. I could do that, but am unsure if my situation would be approved.
Most of society, and my loved ones don't like to admit the fact that paralysis (at high, complete levels- such as mine) is no different than a terminal illness. I have absolutely no means of self sufficiency. I am FORCED into accepting help for EVERY aspect of normal, daily life: to eat, go to the bathroom, dress, bathe, etc. I have two options: accept help and prolong my life, and therefore my own suffering, or reject help, and suffer a long drawn out, painful death. That is an incredibly harsh, cruel position to be in.
I'm not saying everyone with a spinal cord injury, or paralysis should want to die, or that they should be euthanized. All I'm saying is that each case should be judged based on the individual, and his/her own definition of what is a quality life. There should be an alternative, peaceful way to end someone's suffering. The choice, and decision to exercise that option, should be left to the individual. Not everyone will choose to die.
I for one, would welcome a peaceful option. For me, being completely paralyzed has been hell on earth. I absolutely detest needing help, and having no privacy. My physiology, (having IBS) has complicated my situation, and creates a lot of pain, and discomfort. I'm forced into taking dozens of pills, and into enduring horrible treatments (like bowel program-where a nurse needs to manually stimulate my body into evacuating stool), that create as much discomfort as they alleviate, if not more. There is no cure in sight for me, and very little that doctors can do to get rid of the autonomic dysreflexia, I deal with on a daily basis. My tolerance for sitting is poor, and I'm left practically bed bound. I am literally a prisoner within my own body. Right now, my only means of ending my suffering, is to reject the help that is given to me every day. Rejecting help will ensure my death 100%, because I can not feed myself, or get something to drink, without assistance. I can not go to the bathroom, or clean myself. Without help, my death will be assured, in only a matter of time.
In other words, my only option of ending my suffering (which in and of itself is a certainty, given my body, and my condition) is to slowly starve myself to death, or hope to die from untreated infection. Both "options" will result in my death, but will most likely be very painful, and drawn out, and incredibly hard for my loved ones to witness. For me, the best "help" for me, would be a dignified death. I hate that I am so trapped, and so limited by the law. It pisses me off, that religious "morals" and belief systems are imposed on me, and force me to suffer. My life has come to a point, where living equates to suffering. The scale has tipped, irreversibly, to being a life of overwhelming suffering, versus overall good. I truly wish I had the right to die peacefully, and quickly. I'd take that option in a heartbeat.
The documentary also follows a woman, named Cody, who was dying from cancer in her liver. Throughout the film, it shows her with her family, and each of their perspective's about her choice to exercise her right to die. For a little while, she had a period of feeling good, and had outlived her prognosis. She knew that she had the pills, waiting for her, but she chose life. She explained that she knew she didn't HAVE to ever take the pills, if she didn't want to, but that she drew peace and comfort from knowing, that she could spare herself from eventual suffering. She knew she was going to die, either way, but she didn't want to let her illness bring her to the point where she could no longer care for herself.
Naturally, Cody's family was sad, that she was going to die, but they were also very understanding, and supportive of her decision to hasten her own death. She involved them in her thought process, and clearly outlined what SHE considered to be a quality life, and how far she was WILLING to continue to suffer. Thanks to her having the option to die with dignity, she and her loved ones were able to prepare for death, together. They were able to enjoy her last days together, and say their goodbyes to one another, while she was still relatively able to care for herself, and was able to die with pride, and grace. She was able to spare herself the suffering, of added pain and the humiliation, of needing to be cared for (I can relate to her feelings), and spare her family the cost, and the physical & emotional burdens of having to watch her suffer and have to care for her.
Some people can tolerate more pain than others. Some people don't mind being dependent. Some people aren't bothered by vanities, modesty, or pride. Everyone is different. Every case is unique. For those people, whose death is inevitable, without medical intervention, or for those of people living with incurable, painful conditions, there should be a humane alternative, to forced suffering. Giving people the right to die, is not the same as killing people. The choice should remain with the individual that is faced with the suffering. Suffering shouldn't be imposed, or expected, just because there isn't a cure, or viable treatment. We treat our pets more humanely, than we treat our fellow man. I agree with the right to die with dignity, and wish more people would open their eyes, hearts and minds. I wish more states would free their citizens from the oppression of religious beliefs, over law, and give citizens the right to decide how much/little suffering they are willing to endure, and give doctors the right to uphold their oaths, to help ease suffering; even when life itself is suffering.
- Posted using BlogPress from my iPad
Friday, May 6, 2011
Why Getting a Colostomy is NOT an Option
It's hard to explain (more than I've already spelled out in my blog about IBS), why a colostomy would be so horrible. I recently posted my last blog (about my decision to no longer take antibiotics, and creating a DNR) on the Care Cure Forums. Many of the men on there responded, in bewilderment over why I'd rather die, than get a colostomy, which could possibly alleviate some of the AD symptoms, which plague me, on a daily basis. For me, the question boils down to "quality" versus "quantity" of life. In my mind, based on my standards, for myself, my personal struggles, preferences, and wants, getting a colostomy would not improve MY definition, of a quality life, it would lower it. Given my current situation, and the way I define quality, for myself, the bar is already set very low, because of my extreme paralysis. Getting a colostomy MIGHT (let's keep in mind there's no guarantee) alleviate some of my physical suffering, but I am CERTAIN it would add to my emotional suffering. The decision NOT to get a colostomy, is a no brainer for me, for many, many reasons. It has been one of the two things I have absolutely refused to consider (that and a tracheotomy), since day one of my injury.
Sometimes, I think men are more laid back, and accepting about bodily functions, fluids, and modesty, in general. What you have to understand, about me, is that I had bathroom issues before my SCI. I have deep rooted feelings of shame & embarrassment, revolving around the need to go to the bathroom (number two). I couldn't use public bathrooms, or go at other people's houses. Having IBS complicated matters, and I would tolerate tremendous amounts of pain, holding it in, because I couldn't bear the thought (embarrassment) over going, and having other people know about it. I know that's illogical, and that it's a natural human function. However, my brain also tells me it's disgusting, unladylike, and I have always felt the compulsion to hide the fact that I do it. I have always been extremely critical of myself, and often hold myself to unrealistically high ideals, to be a perfect person. Having a SCI and being paralyzed has been my own personal hell. It has forced me to reveal every minute flaw, from acne, to bodily fluids, to poop, to my naked body, flab, hair in places I don't want, etc. The list goes on and on. Everything I used to work hard to perfect, through exercise, diet, grooming, makeup, and in the PRIVACY of MY own bathroom, by MYSELF, I'm now FORCED into sharing with others, and are exposed, for all to see.
I have been self conscious about my weight, and my looks, my entire life. I've always felt the need to be perfect; to look like the women in magazines; to be the best in everything I do; best in class; best teacher; best artist; best daughter; best friend and so on, and so forth. Although I know I'm only human, just like everyone else, when I was on my feet, at least I could deal with my humanly imperfections, and flaws, in private. I had the luxury of being able to create, and mold myself into the best possible version of myself, through hard work. I had control, over handling and tackling my flaws, my way, by myself. Paralysis has robbed me of my control, and my privacy. It has been hell.
I was never comfortable in my own skin. I was always working to improve myself. At the time of my accident, I had already scheduled a cosmetic procedure, to enhance my looks; to be a better me. My accident happened three weeks, before surgery, and it never got done. It still bothers me, and I still feel lacking. In fact, my SCI has made me feel uglier, and more flawed than ever. It's robbed me of the ability to exercise, and tone my muscles. It's left me flabby, full of scars. I can no longer take care of myself (hair, makeup, nails, skin, etc) the way I used to. Having to have other people, help me with those things, that SHOULD be private, has been awful. The worst aspects, of paralysis, and not being able to care for myself, by far, has been anything, and everything related to the bathroom, and my body. The more, foul, and disgusting, the more embarrassment, and shame I feel; the more violated I feel.
Having to have other adults, see my nude body (people that I'd otherwise, NEVER reveal myself too- like my mother, adult siblings, countless aides, friends, nurses and doctors) and have to touch, and help me, and WITNESS my urine, blood, spit, poop, boogers, vomit, and pimples, is horrifying to me. I feel like paralysis has stripped me, of my basic human rights, to care for myself, and keep my self respect, and dignity. I HATE every single time I need to expose myself, and my flaws. I SHOULD at the very least, have the control, and privacy, to handle my body, and all of it's flaws and functions, as a self sufficient adult. It's not normal, or right, that paralysis FORCES me to reveal all my insecurities. Every human being is entitled to privacy, however paralysis has made that impossible for me. Living with paralysis, has imposed countless, uncomfortable, emotionally, and physically painful limitations on me, that leave me with no choice, but to accept, being violated, and continually exposed.
The thought of having to undergo another surgery, and have ANOTHER false, oriphus cut into my body, is unacceptable. I know the pain, and embarrassment that my catheter causes me. It is revolting, and I hate it. It is unnatural, and leaves me susceptible to chronic infection, and in and of itself, has been a source of sickness, and physical discomfort. I absolutely refuse, to do the same, with the single most repulsive bodily function (in my opinion) possible. I will not live with a bag of feces strapped to my side. I'd do ANYTHING to NOT have to "go" in the first place. Being perpetually attached to a bag of shit, to me, is the ultimate submission of self respect. If that is where I'm at, in life, that I must stoop to that low, to extend my life, then life itself is not worth living.
I have endured unconscionable compromises, in these last six years, for the sake of living, but at what cost? I am miserable. I hate paralysis. I hate feeling violated. I hate having little, to no control over my privacy, my health, and my body. I have suffered with loss on such a massive scale, that no one should ever have to suffer. My body and mind are rejecting this unnatural life. I will not submit anymore. I have suffered enough. I have (and continue to) accepted help, to be fed, clothed, and bathed, to endure bowel program (getting routinely sodomized- for lack of a better description), take dozens of pills every day and have a catheter. At what point, am I allowed to say, enough, is enough? I see very little quality, in the life paralysis has forced on me. I will not bend any lower. I will not compromise any further.
I'm tired of living a lie. I am not happy. I will never be satisfied with THIS life, because of ALL the compromise, and lack of privacy. I don't think I'm being unreasonable, for wanting BASIC human rights, and abilities. I don't think it's illogical, or wrong, to want a normal life, to want better for myself, and to have limits, to what I'm willing to accept. I think I've been quite flexible, and rational, these past six years. I understand my limitations, and know the reality of my situation. I know that's it's not done out of malice, but out of care, that people want me to accept, the unacceptable. People want me to live, for them. I'm thinking about living for me. Getting a colostomy is not something I can, or want to have handle living with.
Yes, my decision to forgo taking antibiotics will most likely result in my death. All I'm saying is that, I haven't decided to PROACTIVELY hasten my death, by refusing food/water. I can't control getting, or not getting a UTI, or any other infection. I can control, if I want to fight to live. In that regard, I see no value, in prolonging my own suffering. Just as, getting a colostomy, would serve to extend my life, it would also extend my suffering. No matter how I look at it, living with paralysis, given my physiology (having IBS, needing a catheter, being completely paralyzed, dealing with AD), my personality, and my personal standards, it only equates to suffering. As long as I live, being completely paralyzed, I will continue to suffer, because of my hate of being dependent, lack of privacy, and chronic illness. To me, this life is not worth fighting for anymore.
I'm not saying, I have absolutely nothing worth living for. My loved ones, and the love, support, they give me, and the time we spend together IS most certainly valuable. However, on a whole, living with paralysis is very painful (emotionally and physically). For me, personally, their love and support, is not enough, to counterbalance the immense loss I've endured, and doesn't justify me continuing to live THIS way forever. I'm tired. I don't want to keep extending THIS life. I know that sucks, for my loved ones. I know the pain of loss, better than anyone. It doesn't mean I don't love and appreciate my friends and family. I just feel like I love myself enough, to not want to keep perpetually living a life that is torture. No one has to agree with me, they just have to respect my choice. I'm the one living (or dying) in my shoes. What will happen, will happen. I am at peace with that.
- Posted using BlogPress from my iPad
Sometimes, I think men are more laid back, and accepting about bodily functions, fluids, and modesty, in general. What you have to understand, about me, is that I had bathroom issues before my SCI. I have deep rooted feelings of shame & embarrassment, revolving around the need to go to the bathroom (number two). I couldn't use public bathrooms, or go at other people's houses. Having IBS complicated matters, and I would tolerate tremendous amounts of pain, holding it in, because I couldn't bear the thought (embarrassment) over going, and having other people know about it. I know that's illogical, and that it's a natural human function. However, my brain also tells me it's disgusting, unladylike, and I have always felt the compulsion to hide the fact that I do it. I have always been extremely critical of myself, and often hold myself to unrealistically high ideals, to be a perfect person. Having a SCI and being paralyzed has been my own personal hell. It has forced me to reveal every minute flaw, from acne, to bodily fluids, to poop, to my naked body, flab, hair in places I don't want, etc. The list goes on and on. Everything I used to work hard to perfect, through exercise, diet, grooming, makeup, and in the PRIVACY of MY own bathroom, by MYSELF, I'm now FORCED into sharing with others, and are exposed, for all to see.
I have been self conscious about my weight, and my looks, my entire life. I've always felt the need to be perfect; to look like the women in magazines; to be the best in everything I do; best in class; best teacher; best artist; best daughter; best friend and so on, and so forth. Although I know I'm only human, just like everyone else, when I was on my feet, at least I could deal with my humanly imperfections, and flaws, in private. I had the luxury of being able to create, and mold myself into the best possible version of myself, through hard work. I had control, over handling and tackling my flaws, my way, by myself. Paralysis has robbed me of my control, and my privacy. It has been hell.
I was never comfortable in my own skin. I was always working to improve myself. At the time of my accident, I had already scheduled a cosmetic procedure, to enhance my looks; to be a better me. My accident happened three weeks, before surgery, and it never got done. It still bothers me, and I still feel lacking. In fact, my SCI has made me feel uglier, and more flawed than ever. It's robbed me of the ability to exercise, and tone my muscles. It's left me flabby, full of scars. I can no longer take care of myself (hair, makeup, nails, skin, etc) the way I used to. Having to have other people, help me with those things, that SHOULD be private, has been awful. The worst aspects, of paralysis, and not being able to care for myself, by far, has been anything, and everything related to the bathroom, and my body. The more, foul, and disgusting, the more embarrassment, and shame I feel; the more violated I feel.
Having to have other adults, see my nude body (people that I'd otherwise, NEVER reveal myself too- like my mother, adult siblings, countless aides, friends, nurses and doctors) and have to touch, and help me, and WITNESS my urine, blood, spit, poop, boogers, vomit, and pimples, is horrifying to me. I feel like paralysis has stripped me, of my basic human rights, to care for myself, and keep my self respect, and dignity. I HATE every single time I need to expose myself, and my flaws. I SHOULD at the very least, have the control, and privacy, to handle my body, and all of it's flaws and functions, as a self sufficient adult. It's not normal, or right, that paralysis FORCES me to reveal all my insecurities. Every human being is entitled to privacy, however paralysis has made that impossible for me. Living with paralysis, has imposed countless, uncomfortable, emotionally, and physically painful limitations on me, that leave me with no choice, but to accept, being violated, and continually exposed.
The thought of having to undergo another surgery, and have ANOTHER false, oriphus cut into my body, is unacceptable. I know the pain, and embarrassment that my catheter causes me. It is revolting, and I hate it. It is unnatural, and leaves me susceptible to chronic infection, and in and of itself, has been a source of sickness, and physical discomfort. I absolutely refuse, to do the same, with the single most repulsive bodily function (in my opinion) possible. I will not live with a bag of feces strapped to my side. I'd do ANYTHING to NOT have to "go" in the first place. Being perpetually attached to a bag of shit, to me, is the ultimate submission of self respect. If that is where I'm at, in life, that I must stoop to that low, to extend my life, then life itself is not worth living.
I have endured unconscionable compromises, in these last six years, for the sake of living, but at what cost? I am miserable. I hate paralysis. I hate feeling violated. I hate having little, to no control over my privacy, my health, and my body. I have suffered with loss on such a massive scale, that no one should ever have to suffer. My body and mind are rejecting this unnatural life. I will not submit anymore. I have suffered enough. I have (and continue to) accepted help, to be fed, clothed, and bathed, to endure bowel program (getting routinely sodomized- for lack of a better description), take dozens of pills every day and have a catheter. At what point, am I allowed to say, enough, is enough? I see very little quality, in the life paralysis has forced on me. I will not bend any lower. I will not compromise any further.
I'm tired of living a lie. I am not happy. I will never be satisfied with THIS life, because of ALL the compromise, and lack of privacy. I don't think I'm being unreasonable, for wanting BASIC human rights, and abilities. I don't think it's illogical, or wrong, to want a normal life, to want better for myself, and to have limits, to what I'm willing to accept. I think I've been quite flexible, and rational, these past six years. I understand my limitations, and know the reality of my situation. I know that's it's not done out of malice, but out of care, that people want me to accept, the unacceptable. People want me to live, for them. I'm thinking about living for me. Getting a colostomy is not something I can, or want to have handle living with.
Yes, my decision to forgo taking antibiotics will most likely result in my death. All I'm saying is that, I haven't decided to PROACTIVELY hasten my death, by refusing food/water. I can't control getting, or not getting a UTI, or any other infection. I can control, if I want to fight to live. In that regard, I see no value, in prolonging my own suffering. Just as, getting a colostomy, would serve to extend my life, it would also extend my suffering. No matter how I look at it, living with paralysis, given my physiology (having IBS, needing a catheter, being completely paralyzed, dealing with AD), my personality, and my personal standards, it only equates to suffering. As long as I live, being completely paralyzed, I will continue to suffer, because of my hate of being dependent, lack of privacy, and chronic illness. To me, this life is not worth fighting for anymore.
I'm not saying, I have absolutely nothing worth living for. My loved ones, and the love, support, they give me, and the time we spend together IS most certainly valuable. However, on a whole, living with paralysis is very painful (emotionally and physically). For me, personally, their love and support, is not enough, to counterbalance the immense loss I've endured, and doesn't justify me continuing to live THIS way forever. I'm tired. I don't want to keep extending THIS life. I know that sucks, for my loved ones. I know the pain of loss, better than anyone. It doesn't mean I don't love and appreciate my friends and family. I just feel like I love myself enough, to not want to keep perpetually living a life that is torture. No one has to agree with me, they just have to respect my choice. I'm the one living (or dying) in my shoes. What will happen, will happen. I am at peace with that.
- Posted using BlogPress from my iPad
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