"A Gradual Awakening"

I just finished reading a book by Stephen Levine, called "A Gradual Awakening." It is a book about meditation, and philosophy, based on Theravada, and Zen Buddhism. It was recommended to me, by someone who reads my blogs, and is a fellow member of the "Care Cure" online community I belong to. Curiously enough, his name also happens to be Stephen, and he has been living with paralysis since the early 80's (paraplegic- due to an arteriovenous malformation). He and I correspond, from time to time, and he thought the book might offer me some insight, and comfort, with my struggles, trying to cope with life with paralysis. Luckily, it was available in e-book format, which made it easy to read (I buy books through iBooks & the Kindle app, on my iPad- it's much more convenient than reading traditional books, because I can easily switch between tasks, look up definitions, highlight important passages, and take notes).

I've read many books on meditation, since my accident, so I was already familiar with some of the book's concepts, and practical advice. My grandpa (my stepmom's dad) has been into meditation, mysticism and dream psychology (he owns an impressive collection of books by Carl Jung), for decades, and has hundreds of books in his library (mostly religious texts [of various religions], spiritual, philosophical, and psychological in basis/theory). He has practiced meditation (and prayer- his approach is from a Christian perspective) and kept dream journals, since he was in his forties. He and I spent quite a lot of time together, as I was growing up, and over the years he told me about his studies. I always viewed his studies, as an interested sceptic. I was always open to listen, and to read through books he gave me (more so, since my accident- before I was often busy, and did, or could not make time).

I have always found religion, philosophy, and psychology to be fascinating subjects, worth investigating, pondering, debating, and questioning. Eastern philosophy, in particular has always been appealing to me, and something I have found myself drawn to, time and again, throughout my life. My fascination, for Asian art, philosophy, and culture, started with my discovery of anime (with Sailor Moon- sophomore year of high school- in 1995), and blossomed into a genuine love, and passion to study many facets of Japanese, art and culture, in particular.

In college, I took an "Art of Japan" course, as one of my art history requirements. It was through that course, that I began a serious study of Buddhist art, and philosophy. As with every art history course, I've ever taken, religion played an integral role, in the inspiration, and creation, of much of the artwork I studied. I can remember having to study, and being able to identify hundreds of varying Buddhist statues, and paintings. I learned how to "read" the symbology present (posture, hair knots, drooping earlobes, lotus flowers, etc.) in varying types, and styles of Buddhist art, and about the principles, and philosophy behind such things as, Zen ink paintings, sand mandalas, rock gardens, and tea ceremonies. I especially fell in love with Ukiyo-e wood cut prints, and can remember spending hours at the M.E.T. looking at them, and using their library to write a paper about Ukiyo-e's influence on the post impressionistic movement.

In the years right before my accident, I used to go into NYC monthly. I would sometimes spend all day, getting lost in the Asian, and Egyptian wings of the M.E.T., looking at the artwork, and making sketches. I would take trips down to Chinatown, and spend all day (in the summer and on weekends) browsing in, and out of tea shops, and buying all sorts of Asian style accessories, clothes, figurines and nick knacks. Over the years, I've amassed quite a collection of both traditional and contemporary Asian books, and art. Not to mention, my over the top collection, of hundreds of anime DVDs and Blue-ray disks (I'm an otaku, in every sense of the word). To this day, my apartment is filled with Buddhist iconography, and Asian artwork, and inspiration.

It was no surprise to me, that I'd enjoy, or be drawn towards the teachings, in "A Gradual Awakening." Like I said, it's not the first book I've read on how to meditate. Most books I've read in the past have been more well rounded, in terms of offering varying religious and non-religious approaches, and offering more direct, step by step guided meditations, or contrarily, vague techniques or generic mantras. The difference in this book, is that the author focuses specifically on the teachings of Buddah himself, and offers more specific examples Zen philosophy, with a few guided, purpose based meditations. Even if you've never read about Buddhism, and/or meditation, it is simple to understand, and pretty straightforward.

Naturally, "knowing" and "doing" are two different things. While, Levine's writing style makes the concepts understandable (and approachable), it is a whole other ball of wax, to be able to apply the content, and practice the principles he describes. The book is definitely a good jumping point, to begin reflection, and offers a lot of rational, practical sense, that make the reader (namely me) want to try the theories out for himself/herself, and that can be applied to, and compliment various, existing religious beliefs, or mindsets.

In the book, Levine's (based on Buddah's teaching) overriding theme, is that the root of all suffering, is based on our (collectively) inability to be at one with the present moment. He says it is our attachment to our preconceived notion of "who" we are (as individuals), "what" WE think we should be doing, and/or "where" we should be, that interferes with our ability to be happy, and/or peaceful with our reality. He states that in order to be truly happy, to be whole, and fulfilled, we must begin by letting go of the personal "I."

According to Levine, we are all part of a bigger whole, and that through meditation, we can start to return to this natural state of feeling complete. He asserts that everyone has the innate ability to access this grander sense of truth, by honing one's concentration, through mindful meditation, and gradually awakening. He says everyone must start by focusing on the mind, as an observer, to watch thoughts, as they pass through the mind, and to begin to recognize the constant change, and flow, that is present, from moment, to moment. He warns, not to let one's self get pulled in, or get attached to any one thought, but to detach and let each moment unfold.

He briefly explains the concept of karma, as being "the perfect outcome of previous input." In other words, you sow what you reap. So, from a Buddhist standpoint, my current situation (being paralyzed) is because of some past action. From a rational, logical standpoint, anyone would agree, that my diving into a shallow pool, head first, resulted in me breaking my neck, and thus left me paralyzed. However, looking at my life, from the viewpoint of the larger picture, and the seemingly unjust nature, of how drastically one small action, has caused me so much loss, and suffering, the logical cause and effect explanation, does not seem comforting, and lacks the deeper meaning of "Why?" Levine says, that this is where karma comes into play.

From the Buddhist perspective, the karma I have in this life, can (and has been) effected by this life, as well as by actions in past lives. So, even though it might seem unfair, or unjust, for someone like me (a relatively, honest, kind, hardworking person) to have to suffer so much, for such a small mistake, it is the result of past mistakes, and it is part of a much, much bigger picture. Levine explains, like a circle, it is impossible to determine where one cause, or effect begins, or ends. He doesn't go much into reincarnation specifically, but implies, that whatever desires we have, when we die, or feelings left, unfulfilled, those grasping qualities create karma, and propel us (condition, and effect us) into our next life. Luckily, according to Levine, we each have the potential to reach "enlightenment" and stop the karmic cycle. He offers Buddah, and Jesus, as two examples of individuals who were able to attain enlightenment, through their loving, selfless, detachment, and return to their place, within the universal wholeness.

So, in my case, it makes perfect sense, to say that most (if not all) my suffering is a result of my attachments to my perceived image of myself. I feel sad, angry, and empty, because I am clinging onto the past (aka- an illusionary version on "myself") and onto an idealistic future self. Levine would assert, I am in pain, because I am not living life, in the present moment. According to him, in order for me (everyone) to find peace, I need to learn to love myself, forgive myself, practice loving kindness towards others and to live only in the present moment. He says, in order to be whole, we must let go of our egos; we must accept the present moment.

While I'll admit, the dichotomy between my "ideal" present, and my "actual" present does account for a tremendous amount of suffering, it is easier said than done, to abandon every like, dislike, preference, preconceived notion, desire, wish, dream, hope, and aspiration I've ever had, and what I believe (falsely- according to Buddah) to have been "me" as being me. From an analytically viewpoint, it makes perfect sense, that if I could let go of everything I had, and give up the dreams, and goals I had, for my future, I would be a more content person. In the book, Levine offers guided meditations, to help the reader work through the process of how to live life in the present, and ways to let go of "self."

I definitely agree with A LOT of what the book discusses, from a logical perspective. That might sound strange, given the fact the author is proposing radical ideas on being completely selfless, to the point, where the reader must choose to accept concepts of multiple lifetimes, collective consciousness, and universal oneness. I'm not sure if I'm sold on the idea of karma, to the extent of believing in past lives, or even that the present moment in my life (as I write this) as being perfect and correct, but it does make COMMON, practical sense that clinging to ideals, memories, or even hopes, IS a recipe for suffering. One undeniable truth, throughout this book, is that life changes. From the birth of this moment, to the death of the past moment, life is a continuous flow of change, of beginnings and endings, of causes and effects. The more you resist change, and fight, or try to escape the present reality, the more you hurt yourself. That is basic, powerful, truth.

While I continue to try and let go of my past, accept my reality, and work on being the best person I can be, in the given moment, it is extremely hard. Change, while difficult for everyone, is inescapable. However, most people have the luxury of being able to adapt to change gradually, as it slowly unfolds. My reality, was brutally, abruptly turned upside down, literally overnight. I had no choice but to let go (in a physical sense) of most of my acquired skills, and abilities, in the matter of minutes, because they were forcefully stolen from me, by my paralysis. Contrarily, many new, painful, realities were thrust upon me, like having to accept help (for everything), having to expose myself, needing bowel program, a catheter, and medications. Paralysis did not afford me any time, to ease into my new life, or grant me a transition period. I went from being one person, with one life, to becoming a new person, with a new life, overnight. To make matters more difficult, I have EVERY memory of my old life, and the shadow of the old "me" looming over me.

In a figurative (and literal) sense, paralysis has forced me to consciously experience my own death, and rebirth. While, it is an interesting theory, to explain this present life (my life post spinal cord injury), and my very real physical pain, and discomfort, as a product of past karma, it is not comforting. Even if I accepted the principle of karma as truth, it still doesn't give me the explanation of what actions I did, to create the karma I'm experiencing, right now. I suppose, Levine (and perhaps Buddah) would say, my past actions, and even my current situation are irrelevant, except for the opportunity my present situation affords me to grow, and learn, and of how I choose to act, from this moment forward.

The book is clearly written with the average person in mind, and not aimed at the severely disabled, or terminally ill people. He touches briefly, on dealing with physical pain, but focuses primarily on the psychological pain, and negative feelings, and attitudes, that hold people back. It has certainly given me some food for thought, and some concrete strategies, and techniques, for beginning to work on my emotional pain, and psychological wellbeing, but leaves me with many questions, about how to deal with the physical limitations, physical pain, and chronic illness that are also part of my present reality. Even if I am able to let go, of everything, including my ego, my body can't escape the physical limitations, and discomfort.

I suppose, the hope, or goal, would be that this pain, and physical suffering is only temporary, and ultimately, by becoming enlightened, I could potentially ensure that this lifetime is the last time I have to experience it. The thought of letting go of all desires, seems like an impossibility, and thus dooming me, to forever repeat my mistakes; never feeling satisfied. In this regard, the Christian, Jewish, and Muslim promise of an eternal heaven, seems much, much more appealing. Although the thought at a second chance, to experience the things I can't/couldn't in this life, sounds tempting, the thought of having to experience the drastic, abrupt change that I have had to endure, in this lifetime, has been intense enough to never, ever want to repeat it.

I'm curious to read another book Levine wrote, entitled "Healing Into Life and Death," which focuses more on situations of chronic, and terminal illness. I'll be sure to write a review, if/when I finish it.





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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.


- Posted using BlogPress from my iPad

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.


- Posted using BlogPress from my iPad

My Pets

My pets are one of the few things that make me smile. Ordinarily, I'm a cat lover. Growing up, I had two households (my dad & stepmom's house, in NJ and my mom & stepdad's house in PA). I lived primarily with my dad, and stepmom, and visited my mom & stepdad on weekends and during school vacations. At my dad's we had a strict "no mammal" pet policy. My dad maintained a fish aquarium, and my stepmom has two parrots (one Amazon , name Rocky, and a Goffin Cockatoo, named Noel). While the parrots can be amusing, only my stepmom can actually handle Rocky, and Noel is a bit neurotic. Neither of them provided me, with any companionship. At my mom's we always had a ton of cats, outside dogs, and various small critters, over the years (guinea pigs, lizards, parakeets and rabbit). I was especially attached to three cats, whom I grew up with, Nusy, Gizmo and Mitzoo. My mother had Nusy, every since I was a baby. We got Gizmo when I was around four, and Mitzoo when I was about seven. I was most attached to Gizmo, who lived the longest (she died shortly after I began going to college), and I spent the most time with. She was super lovable, affectionate and sweet. Even as an old cat, she had the cutest high pitch mew, that sounded just like a kitten.

I love dogs, but I've always preferred cats. As an adult, most of my boyfriends had dogs, and both my little sisters, and brother each had dogs. I've been around them nearly my whole life, love playing with them, and being around them, just never owned one of my own, until recently. I'm an animal lover, in general, and like all kinds of little critters. I especially love little, fury mammals. I enjoyed playing with my guinea pigs, at my mom's when I was young, and always felt I was missing something, not having a pet of my own, at my dad's. It wasn't until I was almost finished with college, that I managed to convince my dad, to let me break the "no mammal" rule, and bring home a pet. I adopted a chinchilla, who I named Tskushi (after an anime character), from my mentor, Mr. Grace. He had been my high school art teacher, and mentor for my junior filed work, and student teaching. When I found out he had experience breeding chinchillas, and had a few up for adoption, I just HAD to have one. At first I convinced my boyfriend at the time, to let me keep her at his place, but later moved her home, to my parents house. I thought my dad would pitch a fit, but instead he fell in love her, and played with her, and enjoyed her company, just as much as I did. In fact, when I first brought up the idea of moving out, he asked if I wouldn't mind leaving Tskushi behind, because he'd grown so attached to her.

When I moved out and got my first apartment, one of the most exciting aspects to my new found freedom, and independence was getting my own cat. I adopted a pretty, little grey and white cat, from my grandparents. They had inherited her from a friend, who had initially just asked them to watch her temporarily. They already had two other cats, and I felt like they were struggling to care for them, so I offered to take "Tinkerbell" who I later changed her name to Bella. I moved into my first place in April, 2005 (precisely six years ago, today). I only got to enjoy living in my apartment, and with Bella, for two months, before my injury. Even though our time together was short lived, I quickly fell in love with her, and really enjoyed her company. She had a big personality, and demanded a lot of attention, which I kind of liked. She's was super chatty, and would meow my ear off, as soon as I got home from work, every day.

The funny thing was, I didn't realize that she was pregnant when I adopted her (she was only around seven months old, had a small frame, and had been an indoor cat). Both her, and my grandparents' other cat, were not neutered, and had apparently conceived a kitten, just before I took her. Three weeks before my accident, I came home to a big surprise. I had just finished bar tending school (I had lined up a bar tending job for summer employment), and came home late that night. I opened the door to my apartment, and Bella greeted me, as usual, meowing away, about who knows what, when out of her little cubbyhole, crawls out a small, grey thing. At first, I was shocked, and thought maybe she's somehow caught a mouse. I crouched down, to get a better look, and realized it was a kitten! Immediately, I called my boyfriend (who was already on his way over) and started freaking out, and frantically searching my apartment for the rest of the litter. We searched high and low, and found no signs of any other kittens. I thought that was bizarre, and called an emergency vetinary hotline, to get advice. They told me, it could take hours, in between labor, and to stay up with her, and monitor her through the night. By the next morning, we still only had one, small grey kitten, so we took mother, and daughter to the vet to get examined. They took some xrays and determined that Bella had an abnormally small "litter", of one, most likely due to the fact that she and the father cat, were both very young in age. I was pleased, that they were both healthy, and decided to keep the new addition to the family. We named her Rosa (the initial choice was "Axel"-based of the lead singer from Guns'n'Roses-but given the fact we found out she was a girl, we came up with a compromise). Rosa had just opened her eyes, and had begun running around when I got hurt. When my apartment got closed down, my best friend Erin adopted them both. Now Erin, and her husband have Rosa, and my grandparents have Bella. I've had the chance to "cat sit" for them, various times, throughout the past six years.

After my accident, I spent a year and a half living in a nursing home. In January 2007, I got myself out, and into an apartment of my own. For the first year living here, I lived with a roommate. Steve and I had been high school classmates, and had got back in touch, shortly before my accident. He really helped me out, by agreeing to room with me. Although I have no functional mobility, the state only provides me with eight hours of having a home health aide, per day. It was crucial for me to have a roommate, to have the safety, and security, of having someone here at night, in case of emergency. Steve and I got along well, and I enjoyed our time living together. As an added bonus, Steve brought along his cat Maynerd (aka Manny) to keep us company. I really enjoyed having Manny around, especially during the day, when I was alone in the apartment by myself.

After living here for about a year, Steve and his girlfriend (now wife) decided they wanted to get a place of their own. I had a new roommate lined up, but he backed out at the last minute, leaving me in a tight spot. I asked my sister Kati, if she wouldn't mind coming to stay with me for a while. She agreed, and moved in with her dog Precious, who I knew, since before my accident. Precious is a golden retriever, cocker spaniel, corgy mixed breed. She's super affection, lovable, mild mannered and very well behaved. Having her here has been really great. She's super loyal, and loves to keep me company. She often lays near my wheelchair, or beside my bed. Everyone that meets her, just loves her.

Once Manny had left, I felt like I really missed having a cat. I discussed the idea of getting one, with Kati, and my mom, and they both agreed they'd be willing to help me take care of one. We adopted Tommy, around Halloween, 2008. I had searched for a while, online and ended up finding him through his foster family. Since we already had Precious, it was important for me to adopt a "dog friendly" cat. Tommy is just that! In fact, we think he thinks he IS a dog. He plays well with dogs, is EXTREMELY outgoing, curious & smart. He even wears a harness & takes walks with the dogs (I'm serious).

Tommy is a little too smart! He can open all of the doors in my apartment, so we had to change my doorknob from a lever, to a round knob. When I first got him, I had an environmental control unit, that I could control, by tapping a button, on my pillow, with my head & give verbal commands. If I needed help, I'd tap the button, and say "get Steve", which would in turn, sound an alarm in Steve's room (now my sister's room). For some reason, instead of just pouncing on my sister, and waking her up, he'd come barreling into my MY room, meowing for food, at 5 or 6 am. Then, I'd sound the alarm, and he'd go charging off, towards the second bedroom. The routine got old, fast, and I opted for the different knob, which he's since given up trying. He will on occassion bust into the bathroom, on guests, if they forget to lock the door. He's one of a kind (my family has owned many, many cats). He got very attached to my mom (who plays with, walks, & feeds him), and could care less about me. He is catlike in the one aspect, that he requires a 50/50 relationship. I can't offer him much, so he's not interested in me. That's the main reason I got Naama.

Naama is my very first dog. She is a Miniature Pinscher, with a BIG personality! I always thought if I were to get a dog, I'd want a small, short hair breed. Being a cat person, I like the idea of being able to carry my pet, and be able to have my pet on my lap, and in bed with me. She was a spur of the moment purchase. A friend of mine, who I met online (playing Maple Story) had come to visit. We took her to see my art exhibit, and then to a local mall, to my favorite restaurant chain, the Rainforest Cafe. We made the mistake (in a good way) to stop in the pet store on the way out & I fell in love with Naama. I'd always wanted a mini-pin & really wanted the companionship. I named her after my friend, Naama. She's the best thing (being) I ever bought. She's super cute & sassy. She makes me laugh. She's super spoiled, and she knows it! She's definitely got a "diva" complex, and can at times, be a total drama queen! She's the closest thing I have to a child, and I love buying her cute little outfits to wear. She's got quite a wardrobe, and I get a kick out of seeing her prance around, in her clothes. She's been great for Tommy, and they play well together. They can both get pretty hyper, and Precious is too old to be bothered. Tommy and Naama make good playmates and I just love watching the two of them interact. Having pets has definitely been a spirit lifting experience for me. They can make me smile, even on my worst ways. I'm truly thankful for their love and companionship.

- Posted using BlogPress from my iPad

Paralyzed Without Joy

An online friend of mine Laurie, recently asked me if I'd read any blog postings, by a woman named Heather, who writes a blog called "Paralyzed With Joy!" Heather had left a comment, on one of my previous posts. I saw the comment that she sent to me, and have to be honest, in that I wrote her off as a religious fanatic, and never visited her blog (until the other day, when Laurie brought it up). I'm ashamed to admit that, because it sounds presumptions and rude of me, and that's not usually how I am. It's wrong of me to judge her for saying that she's "joyful," just like I feel it's wrong for people to judge me, and expect me to be happy. Her comment just rubbed me the wrong way, because I disagree with the notion that "God did this to me." I take full responsibility for my mistake. Perhaps, it's because she was injured, through someone else, slamming into her car, breaking her neck. She wasn't at fault, and I'm guessing finds comfort, in the line of thinking that it all happened as part of "God's plan." I stupidly dove into a shallow pool. My foolish mistake cost me my health, and the life I loved. Although, I didn't intentionally dive, to harm myself, and there were many variables in play, it's my actions that ultimately caused my injury. God didn't push me into the pool, nor do I believe (if such a being exists) he/she/it/they planned this life for me. I don't believe in destiny, or predetermined futures.

I know she didn't intend to offend me, no one ever does, when dishing out religious counseling, or offering up scripture. It's just hard, for me, as a skeptic, and often cynic, to accept. While I am grateful for any feedback I get, it is hard for me to accept, when it's coming from a religious perspective. She's not the first to offer up words of "divine wisdom," nor will she be the last. Though appreciated, I take every word of advice with a grain of salt, because no one but me, has to live in my shoes, and knows my suffering, better than me. As far as religion goes, no one can offer up proof, that their beliefs are truth, you either believe it, or you don't. Personally, I have a hard time believing in a God that would WANT THIS life for me.

Laurie and I met through Facebook. She has MS, and got to know me, by reading my blogs. One day, she decided to write to via Facebook, and shared some of her story with me. Although there is a generation gap between us, we share a lot of interests in common. She was also a teacher. We've been writing emails back and forth for some time now, discussing all sorts of things, like languages, movies, pets, religion, family, friends, and our personal struggles, dealing with our disabilities and adapting to life with paralysis. Right now Laurie still has much more functional movement than me, but is continuingly having to adapt to her degenerative disease. I often wonder if it would've made it any easier on me, if I'd gradually lost my abilities, versus losing everything over night. Either way, paralysis sucks, and we both struggle to find answers for "Why us?" and searching for reasons to keep moving forward, despite it all. It helps having a kindred spirit, to talk to, even if you're each having a rough day. Although it makes me sad to know other people are effected by paralysis, it helps having others to turn to, that know what it's like to need help, and having lost independence. It especially helps having someone to talk to that is like minded, and shares a similar perspective, and attitude, towards THIS lifestyle.

Laurie is like me, in that she is disatified with compromise, and hates the ever growing number of limitations that paralysis has forced upon her. We are both very unhappy with the indignities of paralysis, and would most certainly never describe living with such lack of freedom, and forced dependence as "joyful." The mere name of Heather's blog irritates me. How anyone could possibly be "paralyzed with joy" is beyond me. I can't help but think she's insane, for saying things like "On a scale of one to ten (ten being the most satisfied with life) she is a ten" or six years post spinal cord injury, she's "the happiest she's ever been." On one hand, I want to slap myself, for being so critical, and judgmental. Clearly, I don't know anything about this woman, besides the fact that she is paralyzed, and apparently happy. Who am I to say she should, or shouldn't be happy, just because I have such a hard time coping with the changes in my own life, and hate every aspect of being paralyzed? On the other hand, a part of me is even jealous, that someone in a similar condition to me, could be so happy, when I'm so miserable. I know the secret to her happiness, and understand how it gives her such a rosy perspective on life. The source of her happiness, is something I wish I had, but can't force upon myself, and that is blind faith. I've seen it many, times; people like her, and Joni Erickson Tada, that despite their paralysis, they're able to be happy, and draw strength from God (specifically Jesus, in both of these cases).

I struggle with having faith in any God, let alone any one specific God. Although my accident has stirred up fears about God, and an afterlife, it hasn't helped me make any breakthroughs, or have any great epiphanies. On the contrary, it has put more, and more doubt, in my mind about God, and his/her/it/their supposed interest and/or love for me. As for being joyfully paralyzed, I see that as being a product of her convictions to God, not how extraordinary her life is. Let's face it, no matter how you dice it, paralysis sucks. It is a struggle, living with paralysis every day. I don't believe for a minute that any sane individual would choose to be paralyzed, over being healthy. Paralysis might have opened her eyes, and fostered in her a new appreciation for life, or feelings of being given a "second chance", after coming so close to death, but I guarantee she'd prefer being able to care for herself, over the life she has now. It is her belief in God, that gives her the ability to see purpose and meaning, in her suffering, and that gives her joy, despite being paralyzed.

I wish I could say the same for myself, but I can't. My belief in God is shaky, at best. I tend to lean towards Eastern philosophy, and feel turned off by Christianity. Some of my resistance to Christianity is my own, logical analytical nature, and my finding it hard to believe in a God, that would be as petty, jealous, or harsh, as the God of the Old Testament, and my historical knowledge of how Christianity formed, and how man has corrupted, and influenced all organized religions, in general. Growing up Catholic, the church, and it's rituals always seemed suffocating to me. The mere notion that Jesus is the ONLY path to "salvation" has always pushed me away. I just can't believe in a God that would eternally damn good people, just because they worshiped him/her/it/they by a different name. Logically, I don't even understand the huge rift, between Muslims, Christians, and Jews, given the fact that all worship the same God, and believe in the same prophets. Despite their common roots, and belief systems, people use "God's" name to promote their own selfish, man made agendas, and divide humanity. The more I have learned over time, the less I have come to believe, except for one unifying moral, to love oneself and my fellow man. It's the one idea that makes sense, and stands up to the test of time, throughout all religions, and faiths.

I think of having a strong faith in God, can be as equally powerful as ignorance. Ignorance is bliss. Blind faith is like that, in many ways. No matter how outlandish, or unscientific something is, people with faith believe. Faith is blind, and unquestioning. It also lets people be "blind" to the realities of life, and helps paint a silver lining on everything. At times, that blind aspect of faith can be bad, because it can be used as weapon, to make people do, and say things that hurt others, in the name of "God", or accept situations, no matter how horrible they are. I don't think God (if he/she/it/they exists) would've bothered giving us logic, and reason, if he/she/it/they, didn't want us to sometimes use those abilities to evaluate situations for what they are, and think critically, for ourselves. Likewise, if God gave us freewill, then I believe he/she/it/they is solely an observer, of our lives, and doesn't often intervene (if not, at all). I don't think God "gives" us a bad, or good lot in life. I think we get what we make of it. However, that also means I don't buy into the BS that, "God only gives us what we can handle" and "everything happens for a reason." I think sometimes bad things just happen, and they most certainly are too much for any one person to handle. I many respects, I hate myself, for making the stupid mistake, that paralyzed me. On the other hand, I love myself, enough to feel like living with paralysis, is cruel, and unusual punishment. In my case, my punishment VASTLY outweighs, my mistakes, and I don't think it's wrong for me to be upset about, or not want to have to live the way paralysis has forced me to. If God is watching, he/she/it/they knows how hard my life is, and how much I'm suffering, and I don't think it's fair, or just, for anyone else to judge, either way.

It pisses me off, when people down play their paralysis, because I feel like it's crucial for the average person to understand how hard it is, to live this way. I mean, if life's so grand, why bother finding a cure? I believe the key to gaining support for research, is by touching people's minds and hearts, on a personal level, by putting faces, names, and stories, to the word "paralysis." I believe that every person I touch, by sharing my story, and sharing my pain, is one more person that's aware of possibility that his/her life could change; one more person who cares about finding a cure; and one more person that can better appreciate the health, and abilities he/she still has. Yes, maybe if I had a stronger faith in God, this would all be a bit easier to handle, but that wouldn't diminish the fact that I'm dependent on others, sick and in pain. I don't want people to forget, or overlook the realities of living with paralysis. It's not ok, having to have a bowel program, a catheter, needing to be fed, bathed, and clothed. God, or no God, those are REAL, tangible things, that I'm FORCED to face, every day. Paralysis doesn't give me an option, and I don't get a break. I have to deal with all of that stuff, plus all that I lost, plus the sickness, every second, of every day. Does that mean I never have a joyful moment, or have anything I'm grateful for, of course not. However, reality is that living with paralysis sucks, and I'd give ANYTHING (besides my soul- ironic, I know) to just be healthy again.

I'm skeptical of anyone who says they're "happy" with living with paralysis. Laurie is Jewish, and like I said, I was raised Catholic. Neither of us is very "religious", nor do we blame God for our paralysis. It would be very easy, to put the blame on God, since after all, if such a being exists, and created the universe, space, and time, he/she/it/they could certainly fix something as simple some faulty nerve connections. We both take a more logical, fact based approach to life, and chalk our situations up to bad luck, not some divine plan. Rationally, it's hard to accept that anyone would be thankful, to be paralyzed. It seems against human nature, to WANT, or prefer to be dependent on others, and have a constant invasion of privacy, and personal space. The fact of the matter is, paralysis strips people of freedom, and forces a tremendous amount of change into one's life.

Most people would not want to live this way, by choice. It's not to say, that I don't believe people can find things to make them happy, and give them purpose, despite paralysis. I believe each individual's case is unique, and factors like religious beliefs, level of education, career, financial status, personality, support network, and level of independence before paralysis, play a HUGE role, in how "happy" a person can be, living with paralysis. You can't miss, what you never had, and some people lose a tremendous amount more than others. Suffering should be evaluated on a case, by case basis. Just because one person can find "joy" living with paralysis, that doesn't mean everyone can. I think each individual has the capability, and right, to asses their own level of suffering, versus amount of enjoyment. I don't think everyone can find balance, or the extreme opposite, happiness.

Naturally, Heather is entitled to her line of thinking, and in many respects is lucky, to be able view life, in the manner she does. I think that everyone has their own desires, standards, and threshold for what they can tolerate, and that living with paralysis should not be forced upon people, without escape, in the manner that it is. Living this way, for me, and others like me (Laurie for example) find living with paralysis closer to Hell, than to Heaven. I don't think that makes us weak, or wrong, just as it doesn't necessarily mean extraordinary people like Heather, Christopher Reeve, Joni Erickson Tada, and Dr. Dan Gottlieb, as being "better," or stronger, it just means we're all unique. Life is not like a cookie cutting machine, where one size fits all can apply. I think each person has the right to determine what he/she considers to be quality.

I realize that not everyone agrees with that philosophy, but personally, I feel like in certain situations it is justified, not wanting to live (aka- prolong suffering). For example, I don't want to ever live dependent on a vent. I have been on a vent before, and would prefer death, over ever having to go on one again. I realize that there are people out there that live dependent on vents, that feel happy, and fulfilled. Does that make them superior people? I think it just makes them different. I think everyone should have (and do, to a certain extent- through advanced directives and living wills) the right to determine what they consider to be quality. After all, it's very easy to hand out advice, when you're not the one having to live through it. Some people would disagree, and say that people should go to any lengths possible to extend life, like people hooked up to machines, despite being in a vegetative state (such as the Teri Shiavo case) . I realize this is a hot button issue, that people feel strongly about. I'm merely stating my own personal opinion, given my life experiences.

I personally feel as though I'm at a point of living with paralysis (C4/C5 complete injury), where I feel as though living, is only prolonging my own suffering. I battle myself every day, to keep pushing forward. The thing is, I feel as though my life is being sustained by unnatural means. If I truly left my life "in God's hands", I'd be dead a long time ago, because I have no ability to fend for myself. I'm kept alive by people, medication, and awful treatments (suprapubic catheter & bowel regime). I'm only alive because our society has the means necessary to provide me with all the services and things I need. However, there comes a point (right now, in my case) where one must evaulate if the ends justifies the means. I definitely can not say that I'm "paralyzed with joy." I feel more like a prisoner, than anything, and want nothing more than my healthy body back. I hate being dependent on others, and being chronically sick. I'm glad for people like Heather, in that I don't take pleasure in hearing about other's suffering. It's nice for her, that she is happy, but I can't imagine ever finding that level of enjoyment, or contentment, with having to live with so much pain, and compromise.

"Paralyzed With Joy!" - http://paralyzedwithjoy.blogspot.com/



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