"Schwartz Center Rounds Annual Dinner"

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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"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.


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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.


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The Suicide Tourist

I just watched a documentary, called "The Suicide Tourist." It's an very moving, powerful, documentary, chronicling the final days, and eventual suicide, Craig Ewert. The documentary takes place in Europe, and gives an extremely intimate view, of Craig's life, and death. It is a highly thought provoking piece, that raises many questions, about quality of life, and the right to die. Craig himself, is very articulate, and poses some strong arguments, for his decision, and his opinions, on living, suffering, and on dying. I think it offers an exceptional example of why people, OUGHT to have the right to "die with dignity" and demonstrates good arguments, for why euthanasia should be legal, here in the USA. On a whole, the documentary is very tastefully done, and an incredibly brave, and generous contribution to society, on the part of Craig, his wife, and his children. If I could, I would like to thank Craig, and his family, for their willingness to share his story. I have a high respect for his loved ones, in that they supported his difficult decision, and stood by his side (particularly his wife), while he carried out his wishes.

Craig and his wife, both American citizens, had moved to Europe, before he got sick. They had two grown children, and decided they wanted to travel, and live abroad. Craig, who had been a professor of computer science, got a teaching job in England, and he and his wife relocated. His wife started started studying for a Phd, in law, and they were enjoying living their new life together. Everything changed, when Craig started feeling weak, and ultimately was given the ALS (Lou Gehrig's disease) diagnosis, and told his best case scenario, was two to five years left, to live. Around six months, after being diagnosed with ALS , and his rapid deterioration in health, Craig decided he wanted to end his life.

He started doing research, and was disappointed to discover that physician assisted suicide, was only legal in three states (I know of Oregon & Washington). He became frustrated by the fact, that people expected him to just accept his fate, and feared more than anything, what life would be like, once he could no longer speak, or communicate. He feared becoming a prisoner, in his own body (which I feel I am- even though I can communicate- and know what it's like to be completely paralyzed, without speech, from my time spent hooked up to a ventilator) and doubted his life, or death would be as "peaceful" as third party accounts described. He brought up an excellent point, that just because a person is "still," to the casual observer, it doesn't mean that the person is at peace. Being trapped, with no way to communicate, and stuck with nothing but your thoughts, and hauntingly painful memories, is anything, but peaceful. I know from experience. It is hell, and pure torture.

Wanting to prevent further suffering, and speed up the process, of his inevitable death, Craig continued his search for a legal way to end his life, and discussed his viewpoint, feelings and fears, with his wife and children. Realizing that he was suffering, and death was fast approaching, his family respected his wishes, and supported him, in carrying them out. He ultimately found out about Dignitas, a clinic in Switzerland, which offers assisted suicide services, to Swiss citizens, and foreigners alike. Knowing he had to be able to swallow the lethal dose of sodium pentobarbital himself, and that his window of opportunity was closing (due to his degenerative disease, and the unpredictable nature of the illness), he set up his appointment, and was accepted, to receive their services.

During the filming of his four, final days, Craig talked about his reasoning behind wanting to commit suicide, and his opinions on it being illegal, throughout the UK, and much of the US. He very poignantly expressed the fact that, many people throw the issue of God, into the matter, as a leading factor, for why there isn't more support, for assisted suicide, and how it is ironically unfair, that "playing God" is seemingly only a matter of contention, when it involves ending a life (and suffering), versus saving it. He pointed out the glaringly obvious distinction, where doctors "play God," by saving newborn babies (through extreme medical intervention) and keep people alive, unnaturally long lifespans, through medicine, and machines, but that it's "ok" to "play God," when it preserves life. He pointed out the fact, that his respirator, had been "playing God," keeping him alive, and couldn't understand why it was only acceptable, to intervene in extending life, but unacceptable to end life, even when there is no hope of cure, and definite suffering present. I too, do not understand, the rationale, behind this unjust form of thinking.

The documentary discusses Swiss law, and says (which I've read in many articles) that because of the fact that euthanasia is illegal, in the UK, and most of the US, the Swiss government has seen a huge influx, in "suicide tourism," and that outside countries (namely the US & UK) have been pressuring Switzerland to reject foreign petitions, to die within their country. This scrutiny has made it difficult, for clinics like Dignitas, to accept any, but the most extreme, and most desperate of cases. Luckily for Craig, he met Dignitas' criteria.

I think it's a shame that people like Craig (and myself) are forced into living with incurable, extreme disabilities, essentially against our will. I can completely relate, to his suffering, his viewpoint on being forced into dependence, and his fears of feeling trapped, and hopeless. It is a shame, that anyone should have to fly half way around the world, and petition a foreign country, to die a dignified death. I think it is cruel, that our society (and the UK) would rather watch people suffer, who would otherwise be dead, if it were not for medical intervention, than to allow us, to choose what we can tolerate, and what we deem, is a life worth living. Why is it so wrong, to offer a peaceful death, to someone who has no means of living, on their own, to whom medical science can offer no cure, and who is, in his/her own opinion experiencing suffering? It makes me angry, that people like me and Craig have to leave the country, or slowly starve ourselves to death, or slowly die from infection, rather than be given a HUMANE, easy alternative, because other people (who have no clue what it's like to be in our shoes) think it's "right," or "wrong."

I know the pain, and loss, that Craig was faced with, and why he decided to end his life. I know, very well, the terror of being completely reliant on others, and the heaviness, of feeling like a burden. I too, know the sadness, and disappointment, of having to express feelings of wanting die, to the people I love, and the pain and guilt, that comes along with deciding I want to give up on life. I know the shame, blame, and guilt, that society at large, and religion, bears down on the individual. It is a horrible situation to be in.

I know what it's like to look into the eyes, of the people I love, and tell them that I feel my life is no longer worth living. I'm living through that pain, right now, and know how hard it is to let go, even though every fiber of my being is exhausted, and wanting to give in, my conscious keeps reminding me, of the pain my death will cause, and I wish I knew a way to avoid hurting the people I love, while at the same time ending my own suffering. I know how horribly frustrating it is, to be a prisoner, within your body. I'm trapped, exactly like Craig, and I understand his desire to escape.

I applaud Craig, for his courage, and his family, for their selflessness, and compassion. I don't think it's wrong, to want to die peacefully, when death is inevitable, and medicine offers no hope, of alleviating a person's pain, and all the future holds, is a life full of suffering. I wish I had a peaceful option; a means of escaping this life, that didn't involve added suffering, and putting my loved ones through a long, painful process, of watching me slowly die, day by day. I wish everyone could watch "The Suicide Tourist", and gain some perspective, on the fact that, sometimes the most humane, compassionate thing to do, is to offer a peaceful death, and to let go, versus sentencing someone (that would otherwise be dead anyway) to a lifetime of suffering.


Video- http://video.pbs.org/video/1430431984

Information about ALS-
http://www.alsa.org/about-als/what-is-als.html

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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.


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Reasons For Suffering? Cruel & Unusual Punishment.

Although I don't have a strong faith in any specific God, I have been reading the bible (King James version), both New and Old Testaments, and do pray, on a daily basis. I'm not angry at God, and I do not blame God, for what happened to me. I believe, if God exists, God gave us free will. My accident happened as a result of my own poor judgment, and my actions. I have an EXTREMELY hard time believing in the notion, that God "planned" this for me, or that God "wants" me to suffer. If God is all knowing, and all loving, surely God would not want THIS life for me.

While I don't blame God, I do wonder why God seemingly intervenes in some people's lives, and not others. It doesn't seem just, that God would "play favorites" and miraculously heal some people, while allowing others to suffer. I struggle with the notion of why God hasn't chosen to alleviate my suffering, by curing me, or taking me away from this life. Surely, if God exists, he knows how awful my quality of life is, and how terrible it is to feel chronically ill, and have to endure humiliating, degrading treatments.

I know God has blessed me with talents, and that I have been able to do good, and help others. My question is, how long am I expected to suffer, for the sake of others? Jesus suffered for our sins, but at least he understood, and knew his purpose. I feel at a loss, as to why I must live this way. I have no proof, or concrete answers as to why I must suffer, or for how long. Jesus knew his purpose, understood his mission, and had the definite belief that he would be resurrected, and rejoin God. I have no explanation, no end in sight, and do not know for certain what awaits me, after death. I do not have a direct communication with God, in terms of God answering my prayers directly, or giving me explanations. I don't have angels attending to me, nor the power to create miracles. I think it's unrealistic, and unfair, to be expected to live up to Jesus's standard, when he had the comforts of knowing, and understanding the purpose, and reasoning behind his own suffering (assuming that he was in fact, the son of God).

It is especially hard, trying to make sense of how unjust life seems. I was a good person, and yet I must suffer. There are evil people, that rape, steal, and murder, that have healthy bodies, and live full lives. I know that we will all supposedly get judged once we die. People that do evil deeds here on earth, could receive all types of varying punishments, in hell, but heaven is heaven. Just as an example, theoretically, my grandma and I will both be going to heaven. She got to live a full life, have a family of her own, travel, and experience life with relatively good health, very late into her life. My life was cut short, at twenty four, and I've been suffering horribly, ever since. Yet, we will both get the same reward. I'm not saying my grandma doesn't deserve to go to heaven, I just don't understand the reasoning behind my suffering having a meaning, or purpose. It's not like there's levels of heaven. Heaven, is heaven. So why is it, that I MUST suffer? It's not like I'm going to get some extra special reward, or go to a better heaven, than everyone else.

My art, and writing may help others, but my overall lifestyle and chronic illness has left me feeling unfilled, unsatisfied, and very much like a prisoner. I feel as though I'm being forced to live a painful life, full of sickness, loss, and limitations, against my will. I do not want a catheter, bowel program, to take dozens of pills, have no privacy, or personal space, to be clothed, washed, and fed like a baby. I'm only alive because our society has the means, and resources to keep me alive. I'm forced into living a very unnatural, unhappy life.

I have no means to fend for myself. I either accept the catheter, bowel program, medications, and help from others, or I die. Every day, my life is being artificially extended (against my will-for the sake of others). Under ANY other circumstance, the things I have to endure, would be considered torture, but society ignores that truth, under the guise of medical necessity. Just because I have no other choice, doesn't mean I should HAVE to live this way, or be forced to. Yet my caregivers, and loved ones expect me to accept the unacceptable, because they don't want to see me die. They don't want to lose me. They feel I can contribute to society. I know I can, but for me, it doesn't seem worth the price I have to pay. Living this low quality of life, of limited options, and chronic illness is not worth it, for me.

A reader of my blogs, sent me this analogy:

"Thinking about your situation, Christina, I recently had the following thought. Suppose a brutal foreign dictatorship were to take a political prisoner and subject him to the EXACT same routine your paralysis imposes upon you. That is, they bind the prisoner up tightly so he can't move from the shoulders down, can't feed himself, can't even scratch an itch.

He has to be carried or hoisted from place to place. As an added 'enhanced interrogation technique,' this political prisoner also has his bowels manually evacuated every other day, being strapped half-naked to a commode chair, sometimes for a couple of hours at a time, afforded no privacy whatsoever. And, for the convenience of the guards, plus just to pile extra humiliation and discomfort on this man, they surgically install a suprapubic catheter.

They keep this political prisoner in these conditions for HALF A DECADE. Furthermore, like many prisoners of conscience the world over, the tormented man is never told when, if ever, he will regain his freedom. Maybe a year from now ... maybe a month from now ... quite possibly never.

Now, there is no human rights organization on this planet that would not be howling at the moon over what this prisoner was being subjected to. Plainly, he is being subjected to soul-numbing, psychologically devastating torture. NO ONE would assert what this political prisoner was being forced to endure wasn't a horrible violation of the man's most basic human rights, and certainly no one would be telling him to just get used to it, or it isn't so bad, or that once he 'adjusts' to this new way of life at some unspecified time in the future, everything will just be peachy.

Indeed, anyone who DID suggest that the condition of this prisoner's detainment weren't really so bad, or that his situation was one that anyone could cheerfully live with in time, if he put his mind do it, would be called crazy."

When I read this, I couldn't help but scream (to myself), "Thank you!" Thank you for understanding me. Thank you for seeing reason. Thank you for noticing the obvious, that NO ONE else in my life wants to readily express, or admit. I think everything about this analogy rings true, and can't understand why more people don't see my situation, in this way, as I do, or whether or not they are just afraid to admit it, for fear of encouraging me, to give up. I don't expect my loved ones to cheer me on, or want to see me hasten my death. I just want to feel understood, and validated, for feeling the way that I do.

I'm constantly frustrated, at having to explain, or justify my reasons, for not wanting to live this way. I do feel I'm being tortured; not necessarily by God, but just by the nature of how my paralysis has forced me to live. I do feel like I'm being punished, for one mistake (again, not necessarily by God, but punishment none the less). I do feel like a prisoner, trapped in my own body. I do feel like the lifestyle that PARALYSIS forces on me is cruel, and inhumane. It is, what it is, and I have no choice but to accept it, or die. That's reality. It's a reality I want people to understand, because I think it desperately needs a solution, a cure. People like me, deserve a cure, or at the very least the right to decide whether or not we want to live with paralysis (and everything that entails- not out of choice, but necessity).

People often bring up the fact, that I used to be more optimistic, in interviews I've done, and in the TV episode of Soul Survivors. Back in 2009, when I filmed Soul Survivors, I still had hope of a possible cure. Since then, my health has deteriorated, and before now, I wasn't having to deal with daily fevers, cold sweats and mysterious chest pressure. I know (based on everything I read) that realistically, a cure for chronic SCI patients, is at least a decade away. I honestly don't think I can live this way for another decade. Six years has been hell on earth.

I haven't decided if I'll ever choose to actively hasten my death, by refusing to accept food/water, but I have decided I no longer want to go to any extraordinary measures to extend my life (beyond what I'm already doing- and feel in and of it's self is excessive- such as having the catheter, taking dozens of pills, and having a bowel program). I have a willing will, that states I don't want any artificial life support, and am in the process of making a DNR (do not resuscitate order- in case of emergency). If I get a urinary tract infection, or respiratory infection, I'm not going to take antibiotics. I will let the illness run it's course. I'm tired of fighting for a life I hate living. My hope is, that I've suffered enough, and that when that time comes, God and my loved ones will understand my decision.


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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.


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"The Sea Inside"

The other day I watched a very power movie, called "The Sea Inside." It is a Spanish film, that came out in the theaters, back in 2004. The story is based on the true, life story, of a quadriplegic man named Ramon Sampedro. He was injured in a diving accident (very similar injury to my own), off a cliff, nearby his home, into the sea. After his accident, he spent nearly thirty years fighting with the Spanish government, for the right to end his own life. The movie chronicles his uphill battle against the government, in a country, which is highly influenced by Catholic church. It depicts his day to day home life with his family, and caretakers, as well as the development of friendships, with two key women. One woman, named Rosa, is a local, single mother of two, who learns about his plight, through the media coverage of his case. The second woman, is a lawyer, who is battling with a debilitating neurological disorder, and decides to help him win his case, in hopes of securing her own to die, with dignity. Both women come to know, and love him, and end up helping him, in very different ways. In the end, Ramon gets his wish, despite losing the case, for the petition, to legally end his own life. The movie is extremely well written, acted, and touched my heart, and mind on many different levels. It is a story I can completely relate to, and Ramon's view points, and philosophy on life, are very similar to my own. If he were still alive, I'm sure we could talk for hours on end, about the cruelties of paralysis, and how important the quality of life is. I think if there's a heaven, we might become good friends. I'm interested to read his book, which was published shortly before his death, and am inspired by his tenacity and courage.

One of the things that struck me most about the movie, was the interpersonal relationships, between Ramon, and his family members, and the different dynamics each of them shared. It was insightful for me, and hit very close to home, to see the pain and anguish that his family members experienced, do to his injury, and the different way each of them coped, with having to help him, and also each of their varying attitudes, towards his wish to die. An especially poignant scene, is where his ailing father, who is normally very tightlipped, and somber, says something to the effect of "it's hard enough to lose a child; it's worse to watch a child, that wants to die." It's evident how much his father has suffered, watching Ramon suffer, and the feelings of frustration, and inadiquicy that must come along, with not being able to help his son heal. He is also torn between, his two sons, who argue bitterly, over Ramon's injury, and its impact on the family, as a whole. Ramon's older brother Jose, clearly feels resentment over his brother's life, and care being a burden and strain on the family, and yet he is the one most adamantly opposed to his brother's wishes to die. I found it interesting, that although he clearly blamed his brother for having a negative impact on his life, he seemed most affraid, and hesitant to let him go. I can't help but wonder, and compare my own situation, to Ramon's and think about all the stress, tears, and suffering my accident has caused on my family. Despite their spats, it was clear that Ramon was very loved, and well cared for. In fact his sister-in-law, Manuela, serves as his primary caregiver, and doted on him, as if he were her own child.

Ramon's case became a big media blitz, and caused a bit of scandal, given the influence of the Catholic church, and it's roots, into the heritage, and history of the Spanish goverment. One point in the movie, a Catholic priest, who was also quadriplegic, decided to make it his mission, to "save" Ramon, by going to see him, and try to persuade Ramon to change his views on living life, despite paralysis, and publicly suggested that perhaps it was just that Ramon lacked love and compassion, and that his petition for the right to die, was just a cry for help. Naturally, his comments both offended, and deeply hurt his family, whom loved him very much. Like myself, Ramon felt that this life is not a quality life. He believed like me, that it is a second best, compromise of the lives we once had, that strip of us of our freedom, and dignity. He was not happy with settling for life with paralysis, and neither am I.

It is not that I (or Ramon) don't appreciative the love and compassion my family and friends have for me, but love alone is not enough, to take away the physical and emotional pain that comes along with having to live such a limiting, unnatural way of life. Wanting to die, has nothing to do with lacking love, and/or support. Ramon's family was deeply invested and involved in Ramon's overall health, and well being. He had many interested, caring friends. I too have an abundance of love, and support. I am blessed with a strong network, of family, friends, and medical staff, to support me, and provide me with the best possible care, given my condition, and my limitations. I am grateful for the love, and interest my loved ones take in helping me, and being there for me. Unfortunately, love alone, is not enough, to counter balance the physical suffering, emotional trauma, loss of indepedemce, and losing the life I once had. There is nothing, short of a miracle, and/or cure, that can give me back (some of) what I lost, and make up for all the suffering I endure. Neither is very probable, or likely to occur, within the near future (or realistically speaking, even within the next decade.) I understand Ramon's wish to die, and respect his decision.

Its not to say I think all quadriplegics should die, or that their lives aren't worth living. I can only talk for myself, as did Ramon. He was not satisfied with having to endure the indignities that we're forced to face every day, every second. We don't get a break, and all the love in the world doesn't heal this type of injury. It doesn't take away the fevers, the cold sweats, the lack of privacy, or independence. Ramon's attitude was based around the idea, that each individual person has their own threshold for suffering, and while one person might find satisfaction in living dependent on others, and/or machines that, that low standard of quality of living should not be forced upon those of us that have to live it. After all, only Ramon knew what it was like to live in his shoes, and the personal hell that he had to endure, for almost thirty years, against his will. For me, and Ramon, paralysis is worse that being a prisoner. We are being punished, by being forced to live through unnatural means, against our will. That isn't fair, nor is it humane.

I can't speak for other quadriplegics, I can only speak for myself, about my struggles and the physical, and emotional impacts that paralysis has had on my life. I don't judge people who want to live this way, by calling them crazy, for giving in, for settling, for enduring, despite all the pain. I only know what I lost, what memories haunt me, what standards I hold myself to, and what brings me joy and fulfillment. It's easy to judge, when you don't have to deal with a fraction, of what I (or Ramon) went through, and in my case, continue to endure. No one has to sit every day, battling my inner deamons, frustration, disappointment and disgust, over the way I'm forced to live, but me. I think everyone should have the right to determine their own level of worth, and value, in terms of living, versus suffering. Let me worry about my own soul. Let God be my judge, instead of presuming his/hers/its purpose for my life.

Unlike Ramon (who cleverly had a chain of people prepare him a glass of water, mixed with poison, which he ingested, through a straw, on camera), my conscious would never allow me to jeopardize someone else's freedom (by making them criminally liable), or share the burden of the responsibility, for my death, by asking friends, or loved ones, to carry out, my wish to die. If/When the time comes, that I've reached my threshold, and can no longer continue to suffer, as I am, I will choose to excersise my right to refuse nutrition/hydration. It will not be quick, like Ramon's death. It will most likely, be days, or weeks, of slowly waiting to die. Although it might be painful for my loved ones to witness, it is the only option, that safeguards my loved ones, and keeps all the blame with me. Personally, I don't view my refusal of help, as suicide, rather the natural progression of nature. I feel as though my life is being sustained through artificial means, and do not find joy, or quality, in the lifestyle that paralysis has forced on me. I don't see my refusal of nutrition/hydration, any differently than my refusal to want to be hooked up to a vent, feeding tube, colostomy, or any other artificial life support. Right now, people act in place of machines. Either way, I'm unable to fend for myself, and would have died long ago, if I "left my life into God's hands." I think it's bad enough, I'm forced into a corner, where my only options, are to accept this low standard life, full of chronic illness, and no cure in sight, or have to starve to death. We treat our pets more humanely, and like Ramon, it really pisses me off, that God & religion, have such a strong influence, over laws, in a country where church & state, are meant to be separate.

During his campaign to die, Ramon befriended and fell in love with one of his lawyers, Julia. She was suffering from a degenerate neurological disease, similar to MS, and in my opinion, used Ramon's case, to give herself peace of mind, and as a selfish means, to try and use Ramon's case (in the event the government granted him permission, to die by lethal injection) as a precedent, to be able to end her own life, with dignity, before her disease effected her ability to reason, and/or memories. Whether intentional or not, and despite the fact that she was married, she toyed with his emotions, and even went so far as to help him write, and publish his book, and promised him that'd she'd personally help him carry out his wish to die, and die alongside him, once his book was published. Instead, she backed out of the deal, by letter, leaving Ramon, more heartbroken and suffering, than before she met him. Ultimately, it is a local woman, named Rosa (who fell in love with him, became his friend, around the same time period as Julia), who agrees to take the pivotal part, in helping Ramon, realize & carry out his plan to die. It is ironic, that during their first meeting, Rosa goes to meet him, in hopes of inspiring him to find a reason to live. Over time, she came to love and respect him, and finally understood, that the most loving gift, she could give him, was to recognize his suffering, and respect his wish to die.

Like Ramon, my wish is for people to understand how much I'm suffering, and to also respect my wish to NOT want to live THIS way. It is not a normal way to live. It is not easy, being 100% dependent on others (I find it frustrating that some people could accept & respect my wishes, to not want to be dependent on machinery, but yet expect me to accept being dependent on people). Being dependent on others is in many ways harder than being dependent on machines (which I have been), because there is shame, guilt, and judgement, involved in having to reveal yourself and be cared for by people. It is degrading, embarrassing and humiliating to have to be bathed, clothed, and fed, like a baby. It is extremely hard having to accept help, and share your private, personal space, when you have lived and are accustomed to being, an independent, self sufficient person.

Ramon was right, in that "this life has no dignity." I don't think that it's fair that such a low quality standard of life be forced upon people. I think people SHOULD have the right to die with dignity, and peacefully, if all life offers them, is a life of chronic illness, and suffering. People with incurable, debilitating diseases, shouldn't be forced into living UNNATURALLY long life spans, just because there are resources and means available to extend their lives. People like me & Ramon, should have a humane option, out of being otherwise, prisoners in our own flesh. I'm not saying that everyone in my shoes would chose to "opt out," I'm just saying that sometimes ending a life to prevent prolonged suffering, is more humane, than forcing someone who would otherwise be dead (because they can't care for themselves), to live and suffer.

My hope is that, if I do choose to one day stop accepting help, that those people closest to me understand my reasoning, respect my decision and know that I tried to live THIS life, for as long as I possibly could, for their sake (I do not go through all this Hell for myself. That point has come, and gone, a very long time ago). I hope that my loved ones will forgive me, and know that it is not for lack of love, that I want to leave them, but out of exhaustion and being tired of suffering. I wonder if Ramon's family have forgiven him, and have been able to move forward without him. I wonder how well, or poorly they coped with his death, despite knowing his wishes, and witnessing his suffering. I wonder if there is a heaven, and a God, if Ramon is there, beside him/her/it. I think if God exists, he/she/it will weigh the suffering, compassion, and generosity, of people like myself, and Ramon, and consider the amount of good a person has done, against the bad, and that a loving, all knowing God would forgive people, in our situation, for wanting to leave THIS life behind.





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Autonomic Dysreflexia, or Not Autonomic Dysreflexia?

I have a C4/C5 complete injury, since June 2005. I suffer from autonomic dysreflexia symptoms A LOT. I deal with cold sweats, and chills on a daily basis. For the past two years, I've been suffering from this mystery chest pain/pressure. My doctors have done numerous tests, always ruling stuff out, but never coming up with any concrete answers besides, "it's probably neurological." No DUH?! Ya think? They've taken blood, X-rays, CAT scans, an EKG, ultrasounds and sonograms. My heart and lungs results always show as fine. I do have a history of DVTs (deep vien thrombosis-aka blood clots) in my left leg, which is common, and we (my doctors & I) decided against keeping me on blood thinners, since I have a filter, already in place to prevent clots from reaching my heart, or brain. All of my major organs, including my gallbladder have showed up as norma. With the exception of anemia, and the obvious, paralysis, every tests my doctors have given me come back "norma." So, I can't help but wonder if it's all just "normal," for someone in my condition.

The thing is, in order for these symptoms to be classified as autonomic dysreflexia, I thought there had to be an accompanying rise in blood pressure. Most of the time, my blood pressure & heart rate are fine. Yet I feel like I have the flu, almost constantly. I realize that some of my symptoms mimic having an UTI, but come on, can I really ALWAYS have a UTI? Since I have a supra pubic catheter, there's always a certain amount of bacteria in my urine. It seems almost impossible, to ever know for sure, what's wrong. I feel like UTI ends up being the scapegoat diagnosis, for all my problems, and the doctors way of getting around saying, "I have no clue." That's not to say my doctors are "bad," or don't know what they're doing. I've been to specialists, and the thing is, they can only do so much. They have to base their diagnosis, on my descriptions, which are of secondary, seemingly random symptoms. I'm sure it's as equally as frustrating for them, when they can't provide me any relief, or figure out the source of my symptoms.

I try to avoid antibiotics. They reek havoc on my bowel program, not to mention, constantly taking them, just breeds stronger bugs. My doctor & I have come up with a few possible reasons for all of my "sick" symptoms, that include: hemorrhoids, stomach ulcers, and gas. The symptoms vary, slightly, from day, to day, but I suffer from at least a couple, EVERY DAY. The chest pressure builds up randomly (I haven't been able to correlate a direct link to food, or time of day) and subsides a LITTLE when I lay down, versus sitting up. The fact that the pressure is usually worse when I'm sitting up, it makes sense that it could be hemorrhoids, since that's when there's more weight being distributed to my bottom. The other batch of symptoms I get include: cold sweats, chills, phantom sensations in my legs and feet, this odd, gross tingly sensation, all throughout my body, fevers and aches. I usually chalk them up to AD, but like I said earlier, my blood pressure is often low, or normal, while I'm experiencing these symptoms. My question is, are these symptoms really AD, or just freak neurological impulses, thanks to my screwed up spinal cord? I've experienced classic AD symptoms, like profuse sweating, goosebumps, and killer headaches, when my catheter has been blocked. In these instances, my blood pressure definitely did spike, and decrease, once the obstruction was cleared. I think the gas theory makes sense, since it's pain I can't feel, but I've tried products like Gas-Ex & Beano, and never get any relief. My diet is full of veggies, and fiber. It doesn't vary that much. I take the same dose of BP related meds, every day, and have BP every other day, so it's not like constipation is the cause. I do notice the cold sweats and goosebumps during BP, but figure that makes sense, since the stimulation is directly agitating the hemorrhoids. It's a vicious cycle, with the only solution, being a colostomy bag. If I've said it once, I've said it a thousand times, I will absolutely not consider getting a colostomy.

I take Pepcid for my stomach, so that should theoretically help with all the medication I take. If it is always gas that's the culprit, what can I do, besides what I'm already doing? I use topical treatments, and suppositories for the hemorrhoids, but considering I have to have a BP, I'm wondering if there's any other remedies, I haven't tried. I know from reading things online, that hemorrhoids, are quite common, among spinal cord injury patients. I'm wondering if anyone else, in my similar situation experiencing similar symptoms, due to hemorrhoids.

Other than the hemorrhoids, I have noticed a correlation to my period and feeling sick. When I was first injured, I didn't know I had my period, unless my caregivers told me. These past couple of years, I consistently run fevers, have cold sweats and aches, around the week of my period. I'm wondering if this is "normal" among women, with high level spinal cord injuries. I'm also curious, if perhaps I'm experiencing stomach cramping, that I can't feel, and that my brain is interpreting it as these AD like symptoms, even though my blood pressure isn't effected. I had a recent GYN exam, and everything was fine, but it HAS to be more than coincidence that my flu like symptoms increase like clock work, every month. My aunt suggested that I go on one of the birth control pills, that limits the number of periods you have, to a few times a year. The only problem with that idea, is that I'm worried about the possible weight gain, that taking birth control pills tend to cause. I watch my weight carefully. Considering I have little, to no functional movement, that also means having no means of exercising, to shed extra pounds. I already count calories, so I'm very hesitant to risk taking something, that may very well, make matters worse, or not help at all. I don't know many women with high level spinal cord injuries, but am hoping that someone might read this, and be able share their insight, about how their menstrual cycle has changed, or caused AD, since their injury. I never had much complaints, with cramping, or PMS, when I was on my feet. Now, I can't even feel my period. I just know I feel worse than usual, when I have it. I don't know if it's just a change based on aging, or something related to my injury. It's so hard finding concrete solutions, and/or answers.

The fevers and chills are the worst, of all the symptoms. The fevers I get usually start around dinner time, and last well into the early morning (2-4am). I've read that the onset of fevers, later in the day is common. I'm wondering why that is, and if it's just my body's way of expressing exhaustion. I almost always know when I have a fever, because I start to feel extreme fatigue. As soon as I start feeling tired, I usually ask someone to take my temp and I'm almost always right. The fevers are low grade, usually ranging between 99-100.5 degrees Fahrenheit. The weirdest (and most frustrating) aspect of my near daily fevers, is that they don't subside easily. I almost always take Tylenol, or ibuprofen, and lately, not only do the fevers NOT drop, they've actually INCREASED. I'm not sure how else to combat the problem, besides taking pills, and having someone place cool rags on my forehead. It's exasperating, having fevers so often, and having no obvious cause, or solution. Almost every night I start off uncomfortable, with just a sheet covering me, my fan on, and I toss and turn my head, because the discomfort prevents me from falling asleep. Some time during the night, once I've finally fallen asleep, my body cools down. By the morning, I've usually switched over to freezing, and have to have a heavy comforter on me. It's a horribly, redundant, annoying pattern. I know people with high level spinal cord injuries are extra sensitive to ambient temperature. I'm wondering if other people with high level injuries suffer from fevers, as often as I do, and if so, what theories they might have regarding causes/solutions.

Whether or not my chronic "illness" is caused by AD, or not, I'm just trying to see if anyone else out there is experiencing similar symptoms, and if so, if they've found anything for relief, that I haven't already tried. I'm constantly battling depression, and anxiety over all the loss and trauma that my paralysis has caused. Although I'm seeing a therapist, and take several medications, to help cope with the psychological impact that paralysis has had on me, it's extraordinarily hard finding joy, when I'm constantly feeling physically sick. If I could alleviate some of the physical discomfort, it would certainly have a positive effect on my mood, and make it easier to find reasons to move forward. Honestly, I feel as though (based on experience in dealing with doctors, and knowing my body) most of the discomfort is rooted in my spinal cord injury's, overall impact on my body, and the natural progression of time, given the insane amount of change and stress, my body has physically gone through.

Bowel program alone, seems to cause as much discomfort, as it causes. Unfortunately, it''s something I HAVE to have, in order to keep me alive. Obviously (besides the birth control option), there's nothing I can do about having a period. So really, I'm just trying to pin point what is causing what, and find out if there are other people out there, experiencing similar symptoms. From a medical perspective, I'm curious to know if fluctuating blood pressure, is the only qualifying characteristic to tell for sure if a symptom is AD related, or not. I often feel like my injury has condemned me to a life a chronic illness, that is just part of living with paralysis. Living this way, is certainly not normal. I have to rely on bp, medications and being dependent on others, just to stay alive. Those three things are a given, based on my condition. Having no cure in sight, makes the thought of having to live this way forever, seem hopeless. Every year, I seem to get physically worse, and therefore feel emotionally more desperate to escape. I want to know if all that I go through, is REALLY just TYPICAL, given my injury, or if it's just me. Any suggestions, shared experiences, feedback and/or ideas would be greatly appreciated!

It's Hard Feeling Happy, When You're Feeling Sick.

As I mentioned in my last blog, I've been doing a lot of soul searching and actively seeking out answers to some tough questions. My state of mind is an ever changing battleground, where I find myself forever fighting to find reasons for why I'm suffering, and looking for motivation and purpose to keep moving forward. One of the biggest obstacles that makes living with paralysis such a struggle for me, is chronic illness and feeling physically sick. The near constant discomfort has left me feeling very worn down and has pushed me to examine my life very closely, and ask myself why I try so hard, despite my unhappiness, and if there are any solutions out there, and what all of my options are, regarding my life, as it is.

I recently discussed some of these questions with my doctor. He was kind of vague in his responses. He's a PA with a visiting physicians group. He sees me at home about once a month. Most of his patients are elderly. It gets frustrating at times (even when I go to the hospital) because most doctors (including mine) aren't specialized in dealing with spinal cord injuries. I feel like most of the time we're just playing a guessing game, trying to pin point why I'm feeling sick. Most of the time, I get told it's a UTI or possibly neurological. In other words, they don't really know for sure. Understandably, it's probably just as frustrating for them, because I can only tell them secondary symptoms (since I can't actually feel what's going on) like fever, chills, chest pressure, sweating, etc. Given the fact that I have a catheter, my urine specimens always come back positive for infection, so half the time I wonder if it's a UTI that's making me feel sick or something else. All we ever do is run tests, but never find anything concrete. Honestly, I don't know that a specialist could do much better. I'd just feel more confident if I had more access to doctors that had more experience dealing w/SCIs. The only place we really have in NJ for outpatient care is Kessler Rehab, which is an hour commute. It's just not worth going there, every time I feel sick.

Aside from the emotional trauma and dealing with an insane amount of loss, living with paralysis has been physically taxing as well. One of the biggest problems for me personally, is my ever diminishing tolerance for sitting in my chair. My ability to sit in my chair, be productive, go places (not that I'm often itching to go out) and do things, has gradually become more and more uncomfortable over the past couple of years. The discomfort and the chronic sickness has made it very hard for me to find joy in the things I used to. Ever since I had a bed sore (6cm wide and deep- at its worst- on my upper thigh, below my backside) back in '08 my tolerance for sitting just isn't the same. The first couple of years post accident I could comfortably be up in my chair for 8hrs a day, 7 days a week. Now, I get out of bed on bowel program days (which ends up being like 3 hours on a commode chair-for BP & my shower) and then spend the rest of the day in bed; sitting up in bed for an additional hour or so around dinner time. I try to get into my power chair on non BP days, but lately it all depends how I'm feeling. The thing is, I end up getting very uncomfortable in my chair after only sitting for a few hours. My symptoms vary, but it usually starts off with a clammy sensation, followed by weird tingling throughout my body, then further followed by a gradual pressure building up in my chest and/or abdomen. On top of that, I'm constantly dealing with leg spasms, phantom pain and tingling in my legs and feet. I end up asking my aides or family to check if my catheter is kinked, if my clothes are wrinkled, if Id had an episode of incontinence, or any other visible problem, and we almost always come up short.

I do periodically weight shift while I'm in my chair, and have only ever had two bedsores (one was on my elbow). Most of the time there's just no real rhyme or reason for why I start feeling symptomatic. The chest pressure gets really bad though. It feels like someone is filling me up with air and squeezing my sides all at the same time. I also start to get lethargic and feverish after about four hours of sitting. I've had various tests done to rule out serious heart or lung issues: blood works up, X-ray, CAT scan, sonogram & EKG. All of them came back fine. I take Prilosec OTC and have ruled out indigestion for the most part, because there's no obvious connection to meal times. I had a OBGYN exam to rule out anything on that end, nothing. Although, I have noticed a change in my cycle this last year, in the sense that around that week I feel worse than usual. During that week I'm usually achier, more tired and have more frequent fevers. All in all, it's been a vicious cycle, that has kept be bed bound most of the time. For whatever reason, the symptoms do subside a bit more when I'm lying down (not completely though). Knowing I'm going to feel uncomfortable makes me not want to bother getting up, which in turn lessens my tolerance for sitting up. It's a lose-lose situation. I'm just so tired of feeling nauseous, feverish, achy, and down right icky, 75% of the time. It's kind of like having the flu five days a week. It makes it very hard to be happy, or motivated, when you have the chills and feel discomfort.

I'm at my wits end. On one hand, I want to get up and be more productive. I end up feeling guilty and worthless for being in bed all the time. On the other hand, I legitimately feel sick, and lack the drive to do stuff and risk feeling worse. On BP days for example, I'm wiped by the time the nurse is gone, I'm showered and have eaten breakfast. Just sitting on the commode for three hours is taxing on my body, not to mention the constant stimulation the nurses have to do, to make me go to the bathroom. The whole process is both mentally and physically traumatic for me. It has also created hemorrhoids (how wonderful) that are directly irritated further by the entire process. I never had them before my accident, but I hear they are extremely painful. Although I can't feel the pain directly, it could be one of the contributing factors to my mystery symptoms and discomfort.

I end up chalking up a lot of my discomfort to autonomic dysreflexia, which is something many people with paralysis have to deal with. AD is the body's way of compensating for the fact that Ican't feel It is like nature's way of giving me a warning system. When there's something wrong, like my catheter being pulled, or an ingrown toenail, my body responds by elevating my blood pressure. The alleviation in blood pressure presents itself in different ways: chills, profuse sweating, muscle spams and throbbing headaches. If I start to feel symptomatic, I usually assume it's AD related and try to find the cause. If we do find a reason and fix the problem (such as repositioning me, or flushing the catheter) the symptoms subside almost immediately. Unfortunately, most of the time we don't find an obvious reason. So although I know my depression is a contributing factor to me being unmotivated and dissatisfied with my life, my reasons are not all in my head. My physical condition (aka-paralyzed) is the number one contributing factor to my depression, and my overall health and comfort has made it even harder to remain upbeat. Able bodied or not, no one likes being sick.

Having no real diagnosis or treatment for the chronic pressure, fevers (always low grade and always in the evening) and cold sweats makes me very frustrated and adds to my sense of hopelessness. As it is, I take over a dozen pills every day, and have the BP & catheter to contend with, all of which I absolutely hate. All of which, is unfortunately necessary to keep me alive, and relatively comfortable and healthy. The only problem is, it's obviously not working- at least not well enough. It's especially aggravating that I seem to be forever adding more pills and seeing few results. I take three different medication to help with depression, anxiety and insomnia (Pristiq, Remeron & Xanax). I take four different medications for my bowel & bladder related issues (Senekot, Colace, Detrol & Ditripan), on top of watching my diet. I watch my calorie intake and make sure to eat lots of fruits and/or veggies. Then there's the Prilosec, which is supposed to help with stomach issues and a multi-vitamin. It's bad enough being paralyzed, but feeling gross on top of that, just makes me want to curl up and sleep forever. It's like having a chronic illness, on top of a chronic condition. There's no cure in sight for my paralysis, and there's seemingly nothing to make me feel better. I wonder how many people with spinal cord injuries deal with similar problems. It's hard feeling like no one understands you and even harder feeling like there are no answers. I'm just stuck dealing with it; just like all the emotional pain.

Like I said, I've been feeling very down and tired of struggling so hard to cope with my situation, only to feel empty and sad. It's hard fighting for a life you hate living. That's why I started to seriously consider what it would mean to stop fighting. I mean, in terms of the physical and medical repercussions. It's not to say that I have already decided to stop trying. I'm literally just searching for answers. During these last five and a half years, few people have had any concrete answers to give me. There's no recipe for how to cope with having your life turned upside down over night, or how to deal with finding yourself complete stripped of yur independence. Everyone's situation and injury is different. The emotional scars and finding reasons to move forward have to be dealt with on your own terms. No one can say or do anything to make the emotional aspect of dealing with paralysis easier.

It's just infuriatingly frustrating when there's not any answers for the physical stuff. I get so angry sometimes. It seems so unfair that medical science has no cure; that they patched me up and sentenced me to live the life I have. It seems absurd and cruel to me at times, that my loved ones, doctors and nurses expect me to be happy, being paralyzed. It is not a high quality of life, no matter how you slice it; not to me. I feel I have the right to know all the options available to me, because at the end of the day, I'm the one living my life. I'm the one suffering, both physically and mentally. I'm the one that has to endure bowel programs, chronic aches, lack of privacy, cope with all of my memories and all of the loss. I never get a break from it. I never have the luxury of not thinking about it. I'm stuck, in every sense of the word.

I want to know what to expect if I were to say, enough is enough. What would happen if I stop having a bowel regime? What would that do, to a person in my condition? My doctor didn't really have an answer to that question. So I'm left wondering, who would have the answers? I'm not even sure who to ask, for some of my questions. That's why I've opened the subject up to general discussion. I figure there might be people out there who went through something similar with loved ones, or doctors, or nurses that have experience, working with people with paralysis and palliative care. My doctor thought I would qualify for hospice, if I decided to refuse nutrition, hydration and my treatments. He didn't know for sure. I'm wondering who would know. It's not as if I'm taking this matter lightly, and just saying I'm too sad, so I'm going to stop eating. I'm just curious to know exactly what my rights are and what to expect, from a medical perspective, if I chose not to sustain my life; if I decided to refuse help. In a way, I feel like everyone is tip-toeing around the answers, even if they know them, out of fear. It's as if people think the moment I have a few answers I'm going to die that very day. That's not the case. Surely, the thought of starving myself to death does not sound pleasant, and I'm in no rush to find out what it's like. I have looked into it though, as it is one of my only means of escape.

I've read up on the right to refuse nutrition and hydration. There is information based on eye witness accounts. For example, I read it's best not to intake any water at all, because it only prolongs the suffering. I read instead, you should just use a sponge to moisten the lips, to help alleviate the dryness, due to thirst and dehydration. I want answers, because if I really felt as though I absolutely had no will left to fight, I'd want to make my last days the most comfortable as possible. Refusing bowel program and what ever else, I'd decide to stop, would be careful decisions that I want to make based thinking things through and only ever as an absolute last resort.

I realize this might all seem morbid, and/or suicidal to the average healthy individual. The truth of the matter is, I have very little control over anything in my life and I've been hell and back. I know exactly what it's like to be on the brink of death. I've experienced being dependent on machines for life support. My life span is not that of the average person. I am not healthy. I know what it's like to feel like a burden and to have put family in the position to have to make life and death decisions for me. Therefore, I feel as though I both have to and want consider ALL of my options. I've already had to put my wishes down in writing, in my advanced directive, in case I'm unable to communicate my wants. I'm just at a place right now, where I want to know all my options, even if I decide to exercise while I still can communicate them. I mean, my living well basically already states everything I'm asking. I'm just wondering what I'd go through, and/or experience physically, based on medical experience and advice.


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