"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.





- Posted using BlogPress from my iPad

Meeting With Fr. Doug

Well, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.

He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.

I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.

He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.

I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.

Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.

Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.

I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.

After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.

Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.


- Posted using BlogPress from my iPad

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

Response to Feedback: I'm Not Doing So Good :(

Thank you for your responses to my previous blog ("I'm Not Doing So Good"). My blogs post onto several sites, from Blogger.com so I thought it'd be easiest to post this here, as a separate blog entry. That way I can reply to everyone that left me feedback in one place, versus posting a bunch of separate comments. Besides, I tend to write too much to be accepted in the normal "comment" boxes. >.<

I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.

There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).

Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.

The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but  I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.

The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.  

My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.    

As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.  

Regret & Forgiveness

I checked my website email account today and discovered a few new messages. One of the emails was from someone who had watched the episode of Soul Survivors that I did, on Youtube. He asked me if I often re-live (in my thoughts) the day of my accident and how I deal with regret. I thought they were great questions and want to share my response in the form of a blog, since I'm sure there are many other people out there that can relate.

Regret and forgiveness are two things I struggle with every day. I think the worst part about my accident (other than the consequences) is the fact that I did this to myself. I've experienced a lot of horrible things since that day. One of the worst things that happened right after my injury, was the fact that some of my closest friends and family made my situation worst for me, by arguing, accusing, blaming, judging and guilting me and one another. Everyone deals with grief and trauma differently and a lot of things that people in my life at the time, did and said, really shocked me. It is very true that people show their true colors, when you are at your lowest point. Some people soar and go above and beyond your wildest dreams and show you support and love you never expected. Other people shut down, close you out and disappoint you. The surprise comes in when people you've trusted your entire life let you down. They say love is unconditional, but I've learned that unfortunately, that is not always the case.

It has been incredibly hard for me to deal with all the loss and drastic changes that I've experienced. Many of the people that claim to love me, say it is sometimes equally painful (or so they think) for them, to see me suffer. The key difference is, I have no escape. I can't put my paralysis by the wayside when it gets too tough. I don't get to go back to my normal life or choose to remove myself from the situation. My family and friends have the choice to run from the situation, or at the very least, distance themselves, distract themselves or focus on other things. Some people might feel they're not strong enough to handle being in my life. For them, it is easier to dull the pain by turning a blind eye and remove themselves from the situation. At times, it upsets me, because I consider it selfish and cowardly. No matter how sad I am, how hard I try or desperate I might feel, I'm stuck. I either deal with it, or go mad. It's challenging to find strength, when people on the outside are not supportive. You can't help but think, "What's with them? They still have everything, just the same as before. They get to leave here and go on with there life." On the other hand, I suppose it's not fair of me to expect other people to put themselves through discomfort or drama, on my behalf. My family situation is tangled and broken, and added to the difficulty of my situation. My parents divorced when I was a baby and I've bounced back & forth between two families my entire life. The animosity and tension amongst my two families bubbled over after my injury and added a ton of extra stress and pain to my already horrible situation. Despite all the tears, anger and hurtful words, I've been able to forgive everyone, except myself. I guess this stems from the fact that I love my family and friends, but hate myself. It is easy to forgive someone you love, despite how much they hurt you; at least it is for me.

I've never had terriffic self esteem. I've always been hard on myself and much more critical of my own flaws, than the flaws of others. I think the perfectionist in me helped me to achieve a ton of positive things in my life, but it has certainly added anxiety and stress as well. It's very hard for me to be totally satisfied with what I do. I'm not competitive by nature, with other people, but I'm constantly striving to fit the vision inside my head (of myself, goals and aspirations). I've always pushed myself to strive for really high goals and try hard to achieve them. However, I managed to unravel all my hard and shatter my dreams in the matter of seconds. I destroyed everything I worked for with one very stupid mistake. The fact that my mistake seems so obviously idiotic, makes it all the harder to deal with and admit to the fact. Although a lot of people have told me I've made them proud (in how I've dealt with my paralysis), I'm a disappointment to myself.

I don't have any answers for myself, as to why I did what I did. Perhaps, if I had had some sort of plan in mind (like trying to do a shallow dive) and botched it, at least I'd be able to look at it as just being a mistake. However, I have no logical answer and I don't remember any specific intentions. I just dove in, blindly, without thinking. The frustrating part of it all, is that I never dove (as an adult). Swimming was one of the very few physical activities I enjoyed and looked forward to each year. I'd been swimming almost as long as I'd been walking. My family had above ground pools throughout my entire childhood and I was familiar with pool from my accident. I also had regular access (community pool and family) to in-ground pools growing up and as an adult. The last time I can remember ever diving head first into a pool, would've been before the age of eleven. I attended a pool party around that age, which turned me off from diving. Nothing particularly drastic happened at that party, I just recall it being the first time I felt afraid or thought I might hurt myself swimming. I vividly remember climbing the ladder to the high dive board, walking to the edge of the board, preparing to dive and chickening out last minute, to the annoyance of everyone behind me. I can't remember if I was forced to jump in, or if I climbed back down the ladder, but I never attempted a dive again, until the night of my accident.

I normally liked to jump into pools feet first or cannon ball style. The thought of getting accustomed to the water temperature inch, by inch, does not appeal to me. I much rather just take the plunge and be done with it all at once. I know I was feeling lazy the night of the accident and climbing up onto the side of the pool seemed the fastest way into the water. It would be no surprise to me if I would've chosen to jump into the pool, feet first and had broken my leg, stubbed my toes, or banged up my feet. That would make sense. That would sound like me. Diving in, head first, into sixty inches of water makes no sense and doesn't mesh with my character.

For a long time I beat myself up over the fact that I had been drinking that night. Those guilty (guilty of what, I'm not sure) feelings were only exacerbated by the blame and shame that was drilled into me, over and over again, during the first weeks after my accident. At my weakest point, my mistake was thrown back at me, time and time again and the story became exagerated and distorted. I was experiencing fevers 106 degrees and above, hallucinated and heavily drugged. I was living off of machines and was close to death. Despite all that was happening, I had to endure (some) my loved ones telling me how foolish I was and picking at every little flaw I had. I can remember feeling like dirt, here I was, beating myself up more than anyone, fighting to live, and yet certain people felt it necessary to make me feel worst. Aspects of my life were blown out of proportion and lies were made. I was weak, with cloudy thoughts and the desperation of not knowing what my life was going to be like. My loved ones were fighting and all I could do at that point was cry and try to make it seem like it would ok. I really believed that if I tried hard enough, I could heal myself and make up for my dumb mistake. Looking back, it all makes me very angry. I'm angry at myself, for not being stronger to stand my ground and be more in control of the situation, but at the time, my life had just dissolved in front of me and all I could think about was making it all right again.

Naturally, I think I'll always wonder how much the alcohol contributed to my decisions that night. I'll always wonder if those drinks influenced me to dive. I certainly wasn't falling down drunk, nor had I really felt drunk at the time. However from the minute I can remember waking up in the ER, that became the focus point of it all. The alcohol became the scapegoat as to why I dove and the guilt just piled on and on. It's only recently that I've forgiven myself a tiny bit over the fact that I had drank. At the time, I was twenty-four years old. I had bought my own drinks and had no intention of driving home that night. I only had had a few, and was obviously coordinated enough to scale the side of the pool and balance myself on top of the rim. It apparently had seemed shocking to some (obvious by their reactions), that a twenty four year old teacher might like to relax with friends and drink on the weekends. At the time, I let that guilt and shame eat away at me. Fortunately for my sanity, I've since realized that I was not an anomaly. Even now (pushing thirty), tons of my hardworking, educated, professional friends enjoy drinks on the weekends, have parties with friends and enjoy going out. I'm not exactly sure why I was made to feel like an ax murderer, for having a few drinks, but I was. I was balancing a lot of things that year and did stretch myself too thin at times, but that's hardly a crime. I take comfort in the fact that I know I had my life on track (it's easy to judge, when you only see one piece of the puzzle) and had accomplished a lot of things in my life that I'm still proud of. I no longer feel wrong for drinking, however much or little. I could sit here all day and list specific regrets for that day (changing our plans, going to the party, planning to swim, drinking, diving), but it's only because it's in hindsight and because of the overall consequence of the chain of events. I regret drinking because I'll always have that doubt over what role it played that night. I haven't had a sip of liquor since and made a promise to myself to never drink again; not because it's wrong or evil, but because I don't want to ever feel like I'm not 100% in control of my thoughts and decision making.

Drinking is just one of many regretful decisions I made that day. However, I only regret them because of what happened. Any other time, I wouldn't have regretted planning to swim; I'd swum at night before. I wouldn't normally regret the fact that we (me and my ex-boyfriend) had decided to go to the party last minute, instead of just staying home. I'd been swimming a million times before, had drank alcohol and had been to plenty of parties before that night, and had had a fun time and life continued on as usual. I'm sure millions of Americans will enjoy barbecues, drinking and swimming this summer without a problem. In fact, millions of people will do extremely risky things, like ride motorcycles, extreme sports, cliff diving, jump on trampolines, or just silly stunts for fun, and they will get hurt and walk away. Then there's the few thousand people that will get hurt and never walk again. For what ever reason, I was one of those thousand people, in the summer of 2005.

Since my injury, I see the world from an entirely different perspective. I see things on tv or when I go out, that make me cringe, because I know how close that person was to ending up like me. I watch shows like "World's Dumbest...Videos" and I'm just flabbergasted by the things I see people do on purpose and with a specific intent (One example, is a man sets a ladder up against his neighbor's tree, attempts to jump over his fence and land on his pool cover, but gets his foot caught on a rung on the way down and falls on the cement. Another example, is a boy that decided to ride his bicycle off the roof of his house, into a pile of snow down below.) and not only survive, but get up and walk away. At times, it makes me frustrated and angry when I see people do something similar to me or worst, and nothing happens. In fact, in the typical irony to my life, I watched (and recorded) a commercial the other day for Branchburg Pools, in which the salesman dives head first into a similar above ground pool and pops right back up to continue his sales pitch. Don't get me wrong, I don't want to see the other people paralyzed; I just can't help but think, "Why I am so different? Why didn't I pop back up? Why couldn't I walk away?" I certainly can't answer those questions, nor can anyone else.

Having no answers as to why I chose to do what I did, or reason as to why I have to pay such a high price, is extremely difficult to deal with. Given the fact that I was the one that ultimately dove (regardless of any outside contributing factors) into the pool, makes it near impossible to forgive myself. Especially given the fact, that I was an experienced swimmer and have no clear explanation as to what I was trying to do. Did I think I could shallow dive the length of the pool? Did I miscalculate the depth, because I couldn't see the bottom clearly? I'll never know for sure, but I will always regret the choice. The next question is, how do you forgive someone that ruined your life (stole your freedom, took your independence, robbed you of relationships, ended your career and in essence, killed a part of you.)? More importantly, what if you are that person? It's been five years, and I've yet to come up with any solutions. I just continue to try to do the best I can.


- Posted using BlogPress from my iPhone

Acceptance

I often read posts from the Care Cure & Christopher and Dana Reeve Foundation forums. Both websites are dedicated to spinal cord injury and paralysis awareness and research towards finding a cure. Both websites also have active online communities of people living with paralysis, caregivers and medical & mental health professionals. It's helpful to be able to read how other people deal with paralysis and know that there are other people that can understand your situation. I contribute my opinion, information and advice from time to time. I'd encourage anyone effected by paralysis to check out both websites.

The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"

I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.

I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:

I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.

I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).

No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.

Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.

It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.

At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.

Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.

Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.

I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.

I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.

Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.

Sent from my iPad

- Posted using BlogPress from my iPhone

A Matter of Pride??

Living with paralysis is not easy. The smallest tasks that most people take for granted, require help. It'll be five years since my accident, this coming June and there are still aspects of my life that are as hard to cope with as they were back in 2005. My physical wounds only took a few months to heal (what little damage that could), but my mental and emotional wounds still feel fresh sometimes.

I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.

The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.

Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.

Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.

So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."

The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.

The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.

I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.

All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small. 

Faith, or lack there of...

Although I grew up in a Catholic household and attended Catholic school for ten years, I never really bought into the belief system. I guess you could say that I've been an analytical person my whole life, and tend to question things that don't seem logical to me. It's very hard for me to trust in anything that isn't supported with evidence or cold hard facts. I guess most people just follow through believing and/or practicing what ever religion their parents are, or the religious beliefs of their country. On a whole, the adults in my life are not overly religious, so that might have influenced me to doubt or question my religion lessons in school, and later in life. Even as a small child, I had a difficult time believing in the stories of the Bible and magical characters like the Easter Bunny or the Tooth Fairy. Other than telling my Kindergarten class that Santa Claus didn't exist, I tried to play along and not to ruin it for my friends and siblings.

I tend to enjoy playing devil's advocate and like to question or pick apart subjects and have mini debate sessions with my friends. It can be a bad habit at times, because it makes it near impossible for me to enjoy movies, television or books at face value, without over analyzing every detail. It impacts my social life at times, in the sense that I often read into situations more than necessary and end up creating undue stress or anxiety for myself. Generally speaking, I'd say the ability to analyze facts and assess social situations are both good qualities. My problem is that in the past, I tended to only apply my analytical skills to my studies, career and planning, while acting spontaneously and carefree in other aspects of my life. Sometimes, when I look back on my life I wish I could've been more consistent and took the time to think through all the choices I made. I always joke that I'm book smart and life dumb. Although my accident has given me a new perspective on life and opened my eyes to so many things; the one thing that has always remained the same is my lack of faith in a higher power.

Logically, I have an extremely hard time believing in any concept of God. I rely heavily on science and enjoy learning about how things work and why things do the things they do. I love learning the history of things and understanding how and why things are the way they are. In general, I like having answers and proof to back them up. I would imagine most people feel the same way. It is comforting when someone is able to offer you a reason or a solution to your questions. On the contrary, it's frustrating and stressful when no one can give you a straight answer or fix a problem you might have. My spinal cord injury is a perfect example of a puzzle without a solution. Not knowing how to fix my spine is infuriating. The fact that so much time and energy is spent on finding answers to other questions, when we (humanity) still haven't solved the problems of our own bodies seems absurd to me, but that is a whole other topic. What baffles me, is how people can have faith in something they have no proof of, or logical reasons for why or how it exists. In fact, I'd argue there is equal evidence, if not more, that should discourage people from having faith, yet people continue to believe. I'm fascinated by faith and often envy those that have it. I want to know what motivates people to have such one sided relationships and what influences them to believe.

Prior to my accident, I'd probably consider myself an Atheist. A lot of people confuse atheists with Devil worshipers, although they are very different. At the time of my accident I was at an all time low in terms of having faith in any deity, either good or bad. My childhood was filled with obstacles that ultimately turned me further and further away from believing in God. My parent's divorce and the death of my little sister (among other things) were enough to disprove the existence of a loving God. As I got older and learned more about the origins of religions (the reasoning and cultural history behind belief systems), I became less mystified and more aware of man's role in the creation of rituals and rules. Even now, it turns me off when I think about the corruption and bloodshed that has occurred and still occurs in the name of God.

The night of my accident I believed I was going to die and it terrified me. When I was face down in the water, unable to move and could barely see because of the darkness, I accepted the fact that my life was about to end. That night was the first of several nights in which I almost died (due to high fevers). It was during those first few weeks that I first felt the terror of not knowing what would happen if I died. Before my accident I would have said, "You die and that's it. Heaven and Hell are just fairy tales men made up to teach morality." Words are easy to say when you have no experience to back them up. Once I actually experienced coming so close to death, it's as if a switch turned on inside. The tiny flicker of doubt of "what if" has pushed me to find answers. When I do die, I don't want to find out I was wrong. Some might call it "guilt" or "fear," but regardless of my motives, I have felt the need to work on, or develop some sort of faith in God.

Now, I guess I'd be classified Agnostic. I've come to believe in some sort of higher being, but I'm not sold on any one religion, or name for God. Here again, logic steps in and makes me think that if there is a God, it created all of us and so why should it care what name we call it by? My religious friends all have arguments as to why it has to be their God, but so far I'm just convinced I have to be a good person and love my fellow man. When I describe a person as "religious," I mean someone who believes in a specific God/Gods and lives their life according to the specific rules of said God/Gods. I don't think someone has to necessarily be church going or radical to be religious.

On one hand, I envy my religious friends, because their religion gives them peace of mind and security in knowing that there is a certain purpose or plan for their life. On the other hand, I feel suffocated by the thought of having to buy into one group's set of beliefs. I don't like the thought of only a select group of people (worshipers) reaping the benefits of God, while the rest of humanity is doomed. I don't know that I'll ever be able to understand that mind set. Why should children, ignorant people or people that lived before a specific religion existed be punished for a choice they were never given? I'm trying to keep an open mind, but I can't even begin to trust in a God that would punish 99.9% of the beings it created. Why would God create us only to pit us up against one another? Who is to say which group is right? Even religions that are similar can't get along. I mean Jews, Christians and Muslims all worship the same God of the Old Testament and yet, still have been willing to kill one another over technicalities. The thinking of most modern organized religions keeps me from getting involved because it often tends to be black or white, with little room for thought or questions. Why did God bother to give me a brain if I'm only meant to follow blindly like a robot? Why give freewill if everything is already planned? So many people tell me that my accident is part of "God's plan." Doesn't that imply that I was forced to break my neck; that I never had a choice?These are the types of questions that make it hard for me to have faith.

I'm taking the time to read/learn about all different religions in my search for answers, as well as my desire to understand why people think the way they do. I'm interested in knowing what motivates people to believe. I'm especially interested in knowing how/why people that have faced horribletragedy or overcome tremendous obstacles have faith and if/how it impacts their ability to cope. I think having a stronger faith would give me more mental strength to keep moving forward. I'm met with the paradox of wanting to build faith, but not having much faith as a foundation to build from. I find it funny that I ask God to help strengthen my faith. It's as if I'm asking God to help me believe in him/her, just in case he/she actually exists. How does faith get stronger when you never receive any answers or proof to justify your questions? It's a riddle I find very difficult to deal with.

Of all the religious people in my life, I'm curious to know what factors influenced them in deciding which religion to believe: What factors make them believe in it?; How or why they think their religion is right and if they believe other religions are wrong?; What benefits do they feel they get from having faith?; Do they feel their questions are ever answered, if so how?; What proof, if any, do they feel they've seen that has validated their belief system?; What do they think about death/dying?