Love Stinks

So, today is my thirty-first birthday. I'm feeling more run down, old, and exhausted than ever. I realize thirty-one is nothing, in terms of the average lifespan; but my life is anything from but average. I always thought by now, I'd be married with children. Before my accident, I was living on my own as a teacher, and had met the love of my life. He made me happier than anyone else I'd ever been with, and I truly believe we would still been together, if my accident never happened.

It's days like these that make me reflect on my life, my mistakes and my regrets, more so than ever. My birthday has become a day a dread, because I know the emotional mess it makes me. Every year I spend paralyzed is another year wasted, and so many wonderful missed opportunities. I had a terrific life, before my accident and experienced a lot in the first (almost) twenty-five years of my life. I know exactly what I'm missing out on, and how much better life could be. You can't miss what you never had, but I had nearly everything I'd ever wanted. Now, I feel stuck as a spectator to life, and watch everyone else around me enjoying the things I want most desperately, but can't have because of my injury.

Every birthday is a bittersweet reminder of what I don't have, and wish I did. Every year I watch more and more and more friends get married, and have babies. Very few people understand what my day to day life is like, and how very limited I am from doing things. It's easy to say "you can still do everything everyone else can, just in a different way." Those same people that say that, often don't consider all the work and effort that goes into doing the simplest of things. Everything I choose to do, requires the intervention of others. It gets tedious & annoying. Not to mention, there are just certain things I CAN'T do, no matter how you look at it. I can't have a normal sex life. I'm cut off from 90% of my body. Having someone else go through the motions of something I can't even feel, or enjoy seems frustrating & pointless to me. I can't experience a normal pregnancy, or care for a child. I can't even care for myself. Few people understand the isolation, and emptiness that I feel.

This past week, one of my ex-boyfriends (Mike) got married. Another just got engaged (Eric). It's not like I'm still IN love with either of them, but they will always hold special places in my heart. We were friends (and hung out from time to time, before my injury) and although I'm genuinely happy for both of them, I can't help but feel sorry for myself. It's been hard enough watching all the rest of my friends get married and start families, but it hit me really hard to know they are now both part of that list as well. Obviously, as ex-boyfriends & girlfriends we shared a special bond, beyond normal friendship. During our time together (with each of them) we had fantasized of a future together. It seems silly that it bothers me so much, but I think my situation has made me hypersensitive. If I were married and living a normal life, I probably wouldn't have given either situation a second thought. I would have been able to genuinely celebrate with them. However, that's not the case. In fact, I feel lonelier than ever...

I wasted a lot of time (almost six years) with someone (Joey), that I totally regret. I had lost touch with nearly all my friends during my time with Joey. He was very jealous, and controlling and I was foolish enough to put up with it. I left him the year before my accident. During that time I got back in touch with both Mike & Eric, since we shared mutual friends. It was great catching up on old times, and a being part of their lives again. They had each moved on and were dating other people, which was fine. It was just nice reminiscing and spending time with our mutual group of friends (two of my closest friends-that we all share-Christy & Moody). After the way I had cut ties with everyone, I had been thankful they were willing to let me be a part of their lives again.

Life moved on, and we all remained friends. Then I met the love of my life, Jimmy. We dated for five months before my accident. It was a whirlwind romance. Our time together was by far, the happiest of my life. When I got hurt, we had been only days away from moving in together. Instead, everything we had was violently ripped away. We tried our hardest to keep our relationship going, despite my accident, but it collapsed after six months of battling with an impossible situation. He had been forced to move back to PA. I had been stuck in a nursing home; completely crushed in every way. Although it killed us both, we decided to go our separate ways.

Over the past six years, I've never stopped loving him, or been able to get past what we had. My love for him, has kept me from being able to open my heart up to anyone else. For a long while (the first two years) we stayed out of contact with one another. During that time, I tried to force him to the back of my mind, to dull the pain. Then in 2008 we got back in touch, and tried to stay in contact as friends. We corresponded from time to time, and talked on the phone, and he came to visit me one time. All the while, he was in a serious relationship with someone else. Eventually, it just became too painful for me. No matter how hard I try, I just can't see him as a friend. Having him in my life, with her in the background, felt unfair to both of us. I decided it would be best if he let me go, and live his life without me.

It sucked, and I felt like I had lost him all over again. On the other hand, I had to face reality. He had moved on, and loved someone one else. I was only deluding myself into thinking there was any chance left, for a future for us. Being just friends was intolerable, and I've been through enough pain & loss, to not want to torture myself further. As much as losing Jimmy has hurt me, I've never held it against him, or thought less of him. I don't know if I'd be able to deal with being with him, if he were paralyzed. There's so much change & sacrifice that comes along with living with paralysis. I certainly don't want this life for myself, and feel selfish expecting him to give up a normal life, when he has a choice.

Long story short, Jimmy ended up breaking things off with his ex-girlfriend (not exactly sure why & am not going to presume it had anything to do with me). He contacted me, letting me know he was single and he has been back in my life for the past several months. He says he regrets leaving me, and that he does love me. Although that's music to my ears, he's not saying he's willing to try to be more than friends. It's all very confusing. On one hand he says he loves me, and wants to be a part of my life. On the other hand, he's not willing to make a commitment to me. For me, there's only two logical ways I can interpret his mixed messages. One could be, he genuinely loves me (as a friend), but is not IN love with me and wants the freedom to be able to sleep around and have a normal life, in that regard. The second possibility could be, he IS still in love with me, but is just scared.

He's said before that he wouldn't want to make any promises to me, unless he was certain he'd never want to leave again. My brain understands that, but my heart and body are exhausted. I feel as though I'm on the verge of "checking out" on this life and have absolutely NOTHING left to lose. If it were up to me, I'd want to give it my all, because I know my time is short anyway. I feel like I've been so hurt, and lost so much in these past six years, that I have nothing left to lose, and can't possibly be hurt more than I already have been. I'm trying my best to enjoy our time together, but it hurts knowing that there is a distance between us, that didn't used to exist. I feel his hesitation, but don't know the true reasons behind it.

What hurts the most, is feeling like I've never been good enough, for any man to want to be with me forever. I was with Joey for almost six years, with no ring to show for it. Mike was my first love, and although we talked about getting married, we were just naive kids. Eric never seemed sure of anything (and I'm so happy he finally found someone that makes him truly happy). Jimmy & I talked of marriage before the accident, and I do believe we'd be happily married- if I never got hurt. He even wanted to propose to me when I was clinging to life in I.C.U. and at Kessler. Looking back though, he was just just desperately grasping and scared of losing me. Neither of us understood how serious, or life changing my injury was at that point.

Here I am, thirty-one years old and feel completely isolated, devoid of affection and alone. I'm not talking about the love my family and friends give me. I'm referring to a mate, a companion, a second half, a soulmate. I'm missing that in my life, and feel very deprived not having that special someone. What sucks even worse, is that no matter how hard I try to not project my own feelings onto other people, I feel as though Jimmy should be that person; or at least I wish he was. Obviously I can't force him to feel, or do anything he doesn't want to. To push, or insist that he commit to me would defeat the point entirely. I want him to love me, for me, regardless. He either does, or he doesn't.

What really sucks, is that my whole life, friends, family and tons of men have told me how "special" and "beautiful" I am. I've heard those words a million times over. Everyone that has claimed to love me, at some point in my life has said, "You're an amazing person; beautiful, inside and out." Even since my accident, people have said those words to me. However, they all sound like hollow, meaningless words. If they were true, surely I could find someone to be with me. Then again, I know I'm so stuck on Jimmy, that I don't give anyone else a chance. However, he's one of the people in my life that is guilty of saying those exact words to me. At the end of the day though, words are just words. I often wonder if people just say things to make me feel good, or to give me hope, for my hopeless situation. It doesn't make me feel good to hear how "amazing" I am, unless those words are backed up with action.

I feel like no matter who I've ever wanted to be with, I've never been good enough for them. I'm supposedly this great, talented, amazing, beautiful person, but yet that's still not good enough to want to take a chance, or for anyone to have wanted to spend their life with me. I feel like with almost every relationship I've ever had, there's always been a "but" factor. "You're beautiful, but..." "You're terrific, but..." "You're my soulmate, but..." That hurts and really sucks. It makes all the pretty words, and thoughtful sentiments feel empty and false. I mean, if you truly believed someone was your "soul mate" wouldn't you at least try giving them a second chance?


- Posted using BlogPress from my iPad

Foolish Girl

Innocent dreams, of a foolish girl
Blinded by a false sense of security
No control, no planning could ever make it be

One mistake, shattered lives
Body broken, beyond repair
Life forever changed, thrown into despair

Dreams disintegrate before my eyes
All I can do is lay and cry
Losing everything I've loved; what was once mine is gone

Can't repair the damage done
No matter how hard I try, how loud I scream
Life is harsh, cruel, and mean

I'm left inside a broken shell
Forced to live within my personal hell
Wishing I would wake from this nightmarish spell

My life is not a dream
Every day I'm faced with harsh realities
All I want to do is run

Devoid of joy, of hope, of fun
Surrounded by everything I want, so out of reach
Imprisoned in this lonely keep

Deprived of touch, of warmth and affection
Living has become it's own infliction
Every day, harder than the day before

I can't take this pain anymore
I long for everlasting sleep
I just want to be at peace






- Posted using BlogPress from my iPad

"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

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

IBS & SCI

I had a long conversation with my friend Mariam the other night. She's a fellow AMFPA artist and quadriplegic (I hate that description), like me. This month marked fifteen years, since her accident. She lives on her own, in Chicago. She's an amazing artist, and has a wonderfully positive attitude about life, and dealing with living with paralysis. Although she's admitted to me that she's had her fair share of dark days, and moments of feeling like she wanted to give up on life, she lived through that rough period of her life to tell the tale, and has been trying to help me see the possibility of finding happiness, despite our injuries. We share a lot in common, and I really appreciate her insight, and her taking time to try and cheer me up.

Just like I feel it's impossible for most of my friends to see the world through the lens, and perspective on life, that paralysis has given me, it's near impossible for me to see (or imagine) my life through Mariam's eyes. I have a couple friends (including Mariam) that have been injured over a decade, and it's hard for me to wrap my head around that amount of time, living this way. When I think about the Hell these last six (almost) years have been, and my deteriorating health, my mind begins to short circuit, at the thought of having to go through this for another six, or ten years. I get chocked up, just at the thought. It's a very scary, hopeless filled future, through my eyes, at this point in my journey, right now.

Mariam said she went through a similar extremely dark period in her life, where she gave up caring. She said her poor health was a big contributing factor to her mood, and both fed off of one another, in a viscous downward spiral. I feel caught in the current of a similar cycle. It's very hard to envision any brightness in a future, that is certain to include more of the same stuff that I've been going through, and will continue to go through, unless miraculously cured. No matter how you slice it, bowel programs, catheters, lack of privacy and being dependent on others, is part of my future. Those are all inevitables, I can't escape.

Mariam agrees with me, that bowel program is a horrendous aspect of living with paralysis, that we need. However, she said that there might be ways of "streamlining" my program, so that it's not SUCH a burden. She and I discussed our routines, and I was kind of shocked by the comparisons. I have my BP every other day (in the morning). It usually lasts two hours, or more, and entails me sitting strapped to a commode, over the toilet. I have a nurse present, the entire time, who uses a suppository and manual stimulation, every ten to twenty minutes, until I'm "empty" (disgusting, gross & disturbing, I know). On top of that, I take five Senekot and two Colace pills each day. Not to mention, trying watch my diet and eat plenty of veggies and fiber. Despite all that, I still have occasional "accidents", which are terribly traumatic, and usually unexplained. I have at least one a month. Occasionally (like last week) I'll have a BP day with near to no "results" and end up then having to have BP for three days, back to back, as to not mess up my nursing schedule. In contrast, Mariam was telling me, her BP only takes 45 minutes, every THREE days.

I've gotten quite a lot of feedback from other people that have BP, and routines seem to vary widely, from individual, to individual. I've had more than one person respond to my posts (in Care Cure forums), with their own horror stories of three hour BPs, hemorrhoids and the alternative of trading it all in for a colostomy. As I've said a million times, I'm not willing to entertain the colostomy bag option. Knowing the Hell I currently go through, and how my body reacts, I also can't envision being able to get away with only having BP every three days, like Mariam. Although it sounds like a WONDERFUL alternative, to my current routine (the best idea I've heard), I honestly don't think my body could tolerate waiting that long to "go." As it is, I experience a lot of extra AD like symptoms the night before BP. I attribute the discomfort (chills, fevers, chest pressure and sweating) with gas, and with needing to go to the bathroom. I've tried taking Beano & Gas-X, on hopes of alleviating some of the discomfort, but it never does. Not to mention, the days my BP doesn't produce the "typical" amount of stool (OMG! I want to vomit, just typing this), I almost always end up having an accident, which to me, is further proof that's there's just no way my body would let me get away putting BP off, an extra day. In fact, it's been suggested to me by several people, that I ought to go back to having BP every day (like when I was living in the nursing home). I definitely had less instances of incontinence, when I was having BP daily. However, I'm at a point where I literally rather die, than go back to having BP daily.

Mariam said that she thought it's a possibility that the nurses working with me, aren't being aggressive enough, in their techniques. She and I talked at length about this, and she explained to me about having two sphincters, and the importance of the nurses putting the suppositories "up," high enough and how crucial the stimulation process is. To be honest, it was a bit too detailed of an anatomy lesson for me, and I admitted that I try to be the least involved in the whole BP process, as I can, given the fact it's my own body. Normally during BP, I try to pay attention to the news, and distract myself from the ugly realities of my life. I love it when I know I'll have a nurse with me that knows me well, because it means I can be relaxed enough, to NOT have to discuss anything about the actual BP, or give instructions. When I'm with a nurse that I'm familiar with, I basically just let them "do what they need to do" and I zone out, and try and remove my thoughts from my surroundings.

Taking Mariam's advice (knowing deep down that I need to be control and directing my care), I decided to bring up some of our discussion with my nurse, to make sure she is in fact doing everything correctly (which I was pretty sure she was). She acknowledged all of the important points, and said she'd be more than happy to try her best to speed things along. The thing is, there's often times when my nurses (including the nurse I spoke with) have told me that they've been "up there," and couldn't feel a thing. Then later that same day, I'll end up going more. So basically what MY nurses have to do, is determine when I'm "done" based on quantity, and not only just by what they feel. Sometimes they'll even have to use a second suppository to "get things moving." When it's all said and done, I never feel comfortable (meaning, not being paranoid about having an accident) unless I've gone a certain amount. It ends up being a waiting game. The nurses keep checking, and stimulating, until I "go" that certain amount. It's awful. Regardless, I'm usually always paranoid of accidents. Partly because they have happened randomly, even after a "good" BP, and secondly, because the threat is always there, and the trauma of it happening once, has been enough to keep me forever worried. It's pretty much become my worst fear, that I fear on an almost constant basis.

Before my accident, when I was around twenty, or twenty one, my mother had a scare, thinking she might have Chrone's disease. She ended up having a colonoscopy done, and was diagnosed with IBS (irritable bowel syndrome- aka spastic colon). I had always had bathroom issues myself, often suffering from diarrhea and almost always getting sick, if I was anxious, or upset about something. I decided to get myself checked out, around the same time, and was also diagnosed with IBS. I was given pills, that didn't help, and I stopped taking them. I never found any direct relation to food, or drink, but definitely believe there were psychological triggers. I can remember being sick to my stomach (with the runs) for every major event in my life. Not being unable to use public restrooms, and being highly sensitive about the matter, complicated having spastic colon, and I remember many days that I was doubled over in pain, because I HAD to "go," but couldn't bring myself to use the bathroom, wherever, or around whoever I was with, at the time.

Between my conversation with Mariam, and with my nurse, I got to thinking if maybe it's not so much my hemorrhoids that cause me so much discomfort, and make my bowel program seemingly so hard to manage and control, but perhaps it's the fact that I still have IBS. It's not that I've never had this thought before, but I always ruled it out, given the fact that I know my biggest trigger of my IBS, was always my emotions. I've always assumed, since there is no longer a conscious connection between my brain, and my ability to control my bowels, that IBS too, would no longer be an issue. I figured, if my emotions still ruled my IBS, then theoretically, I'd be able to use anxiety to my advantage, and will myself into needing to go. That most certainly isn't the case. I'm anxious/paranoid about BP specifically, 99% of the time, so based on that alone, I'd be "going" all the time. On the other hand, I wonder if my anxiety and IBS create more gas, and sensations of needing to go, that my body is interpreting as pain, and thus creating all the AD symptoms. It would explain a lot. I'm curious to know if anyone else with a SCI has had experience of being previously diagnosed with IBS, and if he/she has had any similar issues of AD and unexplained problems with BP and/or episodes of incontinence. I'm also curious to ask my doctor what he thinks. Unfortunately, there's no way to know for sure. One frustrating aspect of IBS, is that it's difficult to treat. It's even harder to try and treat something you can't directly feel. I'm grasping at straws, but it's an idea I'm curious I'd like to throw out there, and get some feedback on.


- Posted using BlogPress from my iPad

Out & About

I started thinking about my previous blog, about 9/11 and how fast life can change, and retelling my memories of that day made me reminisce about all the fun I used to have traveling into NYC, and going out, in general. Prior to my accident (June 2005), I was constantly on the go. I loved to travel, and made regular trips into NYC and PA. Half of my family lived in the Pocono mountains of Penssylvania, and one of my best friends and ex-boyfriend lived in other parts of PA. I'd been making the two hour trip, to and fro the Poconos since my mom moved there, when I was nine. Two hours in a car was no big deal for me, and driving the route to my family's house was second nature. Besides that, I just enjoyed traveling. In college I made annual trips down to Orlando, to Disney World, and a couple of road trips up to Maine. Once I graduated college (and started making real money), I started making trips outside the country. In the years just prior to my accident, I went to Italy, Puerto Rico, and Canada. I've always enjoyed going out. I regularly dined out, went shopping, to the movies, to the beach, to parties, dancing, site seeing, and a variety of other things.

I would love to see more of the world, and go out more, but most times, the cons of paralysis, outweigh the pros. I find myself doing less and less, because the memories are too painful, the compromises are too many, and/or the preparation, planning, and health concerns, make the experience more annoying, than enjoyable. Most people don't realize, or consider the amount of effort that goes into to everything I do. Just getting up, into my wheelchair everyday, requires someone else, bathing me, dressing me, grooming me, feeding me, and physically transferring my body. All of that has to be done, just for me to be able to get into a car, let alone determining if places are accessible, or if I'll need additional accommodations. I, in the meantime, am always concerned with the unpredictability of my body (my tollerance for sitting, blood pressure, pressure sores, skin breakdown and incontinence issues). I have concerns in the back of my mind, that the average thirty year old, just doesn't have. It's not as simple as just rolling out of bed, hoping into the shower and throwing some clothes on. I can't just pick up and go on a whim, because I'm completely reliant on others. On top of the logistics, and physical challenges, I'm constantly weighing the emotional pros and cons of everything I do. Most times, the enjoyment factor doesn't cut it for me, and I rather not go through all of physical trouble, to do something that will ultimately upset me, more than entertain me. Unfortunately, most of the enjoyments of my "old life" are more painful than pleasurable, and therefore I avoid them.

I've flown to FL since my accident (twice).Both trips were to Disney World. The first trip was for my best friends wedding, and was a short stay, mainly comprised of activities within the resorts. The second trip was for eight days and we stayed at a resort and went to the theme parks & Downtown Disney. I used to Disney go every summer (as an adult, on my feet) and am extremely familiar with most of the Disney World attractions. Let me tell you, it's like night & day, traveling paralyzed, versus traveling able bodied. Disney has made a lot of accommodations for handicapped people, and much of the transportation and certain attractions are already setup with accessibility in mind. Even so, navigating large crowds, restaurants and shops, have not been very pleasant experiences for me, in my wheelchair. Not to mention the unique experience of flying paralyzed, which brings with it a ton of unpredictabilities, like lay-overs, and delays, which can be extremely taxing, and dangerous, because of the risk for skin breakdown. Let's not forget, all the preparations that need to be made in advance (renting equipment, hiring or bringing a nurse/aide, medical supplies, accessible transportation, needing transfer assistance, etc.).

You'd think you would stand out, sitting in a wheelchair, and people would be mindful, and move out of your way, or help you, but I've noticed that to be the exact opposite of reality. People are so wrapped up in themselves, that they have literally tripped over me, crashed into me, stand obliviously in my way and create obstacles, more times that not. Stores and restaurants often cram the maximum mount of merchandise and/or furniture into their space, which makes it near impossible to navigate, without bumping into displays, forcing people to move, or having to rearange things, just to get by.

Going into NYC used to be my second most favorite outting, outside of trips to PA. I haven't actually been into the city, since my accident. It's something I miss very much. I've been wanting to go for some time now. I'm just so accustomed to going by train, and subway by foot, that I'm a bit intimidated at the thought of figuring out how to get around in a wheelchair. Driving into the city is a headache and more expensive. I do miss going to the museums, walking around Time Square and hanging out in Chinatown. It's not that it's impossible, it's just a hassle having to come up with all of the routes I'd need to take. Not to mention, I'd be relying on someone else for transportation & assistance.

NYC is not nearly as wheelchair friendly as Disney. It is noisy, messy, crowded and fast paced. Its a city, not a theme park, so here aren't designated people, every ten feet, to help you out. While New Yorkers aren't as obnoxious & rude as tv portrays them, they are busy living their day to day lives, not paid employees, ready & willing to make your trip pleasant. Certain places, like Museums, plays, or Madison Square Garden, would probably be the least hassle, and the most accessible. I've thought of attempting to go into the city so many times, I just haven't followed through with it, yet. Plus, I feel as though there are just certain aspects of the city that I won't be able to enjoy anymore. I can't imagine having fun in my chair in Chinatown. It's challenging enough to keep up with hustle & bustle on your feet. The shops are mostly all tiny, cramped & cluttered. Many shops have steps, or a small step, or curb to tangle with and I'd barely be able see a thing above the crowds. It's always congested, and the sidewalks are full of hazards, like merchandise for sale, and garbage.

I used to LOVE going to mall. If you've ever been to New Jersey, it's evident that we Jerseyans love our malls. You can't drive through our state without seeing a huge mall, about every 15 miles. I don't mean strip malls, or outlet malls either. I'm talking about, multi-level, indoor, several big name department stores, food court, sit down restaurants, map necessary, shopping malls. From the moment I got my drivers license, until the day of my accident (1997-2005), I can honestly say, I went to a mall at least once a week. As a teenager, the mall is a fun place to hang out. In college, my boyfriend spoiled me with shopping. As a teacher, I was earning a real salary, and was single, with money to spend. I'm not rich, nor I have ever been in debt (besides medical bills, post accident), but I've always enjoyed to shop. I enjoy window shopping, buying gifts for other people, and used to adore clothes shopping, for myself. Since my accident however, I tend to avoid the malls and do almost all of my shopping exclusively online.

I was never bothered by crowds, until I was in a wheelchair. I'm partially bothered due to self consciousness (I have have always been that way, in terms of comparing myself to others, but had much more confidence in my physical appearance before my accident. My entire self image has declined drastically, since my accident. So much of my body has changed, and is out of my control to maintain, and/or utilize, that it often feels foreign to me.), but more so by the simple fact that it has become difficult and annoying to get around. As I said earlier, most stores are so crowded with stuff I can barely get around, and it bothers me, not being able to pick things up, get close enough to see things, or be able to try clothes on. It's also especially embarrassing if people need to move, or move displays for me to pass through. I feel as though it draws unwanted attention, and further emphasizes me disability.

Eating out was another favorite past-time, that I rarely do anymore. Just the fact that I can't feed myself, is enough to make the experience less enjoyable. It is embarrassing, to have to be fed, like a baby, in front of countless strangers. Not only do I get annoyed, because I can't eat at my own pace, it's equally annoying for whoever is feeding me. Neither person gets to really enjoy their meal. Someone always ends up eating cold food. Plus, there are many foods that aren't designed for a fork & knife, and become very tricky to eat, when someone else is trying to feed you. Foods like, cheese steaks, subs, spaghetti, ice cream cones, candy apples, french fries, popcorn and burgers, are sloppy, awkward and meant to be held, bit, or tossed into your mouth, by the handful. It's not enjoyable, having to cut certain foods that are meant to be bit, and be able to enjoy the mixture of all the layers of flavor. It's awkward eating foods that are dipped, or have heavy sauces, or dressings. Messy foods just draw more attention, and add embarrassment to the situation. Not being able to wipe my mouth, or clean my own face is bothersome. Most restaurants are too crowded to easily maneuver the wheelchairs, and most tables are impossible to get close too, because of height. Having to always sit at the end of a booth, sideways, or protruding out, from the rest of the group, makes me feel more singled out, and self conscious. Having to always direct what I want next, or when I'm thirsty is tedious. I hate having to always drink from a straw, and ask for a sip. For me, paralysis has drained the enjoyment out of the actual "dining" experience. I still enjoy the food, I just hate the "dining." I much rather order to go, and eat in the lower stress environment of my home, in private.

I challenge all of my able bodied readers to experience going out in a wheelchair first hand. Go to the mall and rent one of the chairs, or scooters for a few hours, and see what I mean. Have your significant other push you around, and see things from my perspective. Try to maneuver inside of a department store, and crowded shops, like Claire's, Spencer's or Brookstone. Go out to eat, and let your friends feed you. Even without a wheelchair, you can experience being fed. I don't mean one, or two romantic looking bites either, I mean, a full meal, with a beverage (one person using hands, and the other not). I guarantee, it'll only take one outing to understand what I mean, and realize why certain things are no longer enjoyable, or worth it, to me. It's not just a matter of wanting to be anti-social, or cooped up in my apartment. It's a matter of what is no longer pleasurable, or fulfilling.

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. 

Going Out

As many of you know, I don't go out much these days. I basically stay inside all winter, as it's near impossible for me to withstand the cold weather. I'm usually colder than everyone to begin with, so even with the heat on at a normal level, I'm shivering. My inability to move around and poor circulation make it very hard to warm up. Unless it's something very important, I try to avoid making plans with friends that require me to leave my apartment. Luckily, there's plenty of holidays and birthdays to keep me busy. Every year it seems to get a bit harder to meet up with friends, due to the fact that almost all my friends are married and/or have children. Although, I'm grateful that my friends make the effort to visit me, given everyone's hectic schedules. I have a reasonable excuse for staying indoors during the winter; it's the rest of the year that I struggle and to force myself to go out.

Before my accident, I was on the go non stop. I spent a great deal of time in my car and juggled a lot of responsibilities, in addition to hanging out with friends and family. Spring 2005 was probably the most hectic time in my life. I was always pressed for time, but none the less very happy. At the time, I had my full time teaching career, my apartment, traveled back and forth to PA (to visit friends and boyfriend) almost every weekend, put on three art shows for my students, joined a gym, was attending bar tending school, and taking a graduate course. I still managed to go out and enjoy my free time and genuinely looked forward to spending time with my friends and family (especially my boyfriend). I loved to shop. Even when my down time was scarce, I'd hit the mall and do a little shopping. I never ran short on reasons to buy new clothes! Despite all my spending, I was responsible with my finances and had no debt. I just enjoyed giving gifts and having new things. I was not married and had no children and was making a good salary, so I had no regrets treating myself. I'd have to say, I hit the mall about once a week. Buying clothes was my all time favorite thing to do at the mall. I enjoyed seeing all the latest fashions and had fun trying on clothes. It was always fun and exciting for me to have new things to wear.

I was comfortable with going out by myself, but I preferred being with friends (or boyfriend) most of the time. I'm a people person. Crowds never bothered me, in fact I kind of liked the hustle and bustle of the city. The more people there are, the more interesting things there were to see. I used to go to Manhattan regularly during my college years, for assignments. I could spend the entire day just seeing the sites and watching other people. I loved the diversity of the city and the fast paced nature of the people. Even simple things, like taking the subway, were interesting and fun for me. I could spent hours wandering around the museums. It didn't seem to matter how often I went; there was always something new to see and favorite areas to explore.

I've always enjoyed dancing. I missed out on parties and dancing during my college years (due in part to an ex-boyfriend). I say "missed out" because there were many opportunities and invites to go out that I turned down. I would've loved to be more social in college, but my choice to be with my boyfriend (during college) kept me from going. The positives to staying at home more were having good grades and tremendous focus. However, once I was single again, I found a sense of freedom and exilleration that I had been missing. I went to clubs and bars occasionally on the weekends and had fun dressing up and letting loose. Hanging out with some of my friends required along drive, but it was worth it. Dancing was a perfect stress relief and I had a lot of laughs with my friends. I was usually up for doing almost anything and perferred to go out versus staying at home. Apart from shopping and going dancing, I enjoyed seeing all of the latest movies and spent a lot of time eating out.

I've always piled a lot of responsibilities on my plate, but somehow managed to balance everything fine. I was rather good at time management and being organized, which made it possible to have a life outside of career. When I was still living with my parents, I can remember them getting annoyed at the fact that I was hardly ever around. They felt I treated home as a hotel, and only stopped by to sleep and shower. For the most part, they were right. I've been on the go almost my whole life, bouncing back and forth between divorced parents. I had moved out once, before I had my own apartment. Moving back wit my parents after having lived independently felt awkward and suffocating. I didn't waste much time planning on getting my place. It's not that I have anything against my parents, I just prefer to be free andindependent. I liked the feeling of not having to depend on anyone and the freedom to come and go as I pleased.

The thing my parents didn't realize was how many extra hours I stayed at work, or how many projects I was working on. I was usually the first teacher to arrive, and the last to leave. I never minded putting in extra time, because I loved my job. I was never asked to do a lot of the extra things I did, but they were important to me, and I was happy to sacrifice my time. I wanted my classroom to run a certain way and I wanted to be flexible in helping with responsibilities around school. The year of my accident I put on three art shows, worked on two murals and ran the yearbook club. I attended school even and maintained an ever changing display of my students' work. I don't think anyone in my life (apart from my boyfriend) realized exactly how much I was balancing at the time. I was stressed out, but I was also very proud of my achievements and was happy with my life.

As you can imagine, my life changed drastically after my injury and there are countless aspects of my "old life," that I've lost, or no longer enjoy. My desire (or lack there of) to go out is a perfect example of how my injury has had an impact on my life. Since my accident, the thought of going out is comparable to having a root canal; something you have to do, despite the pain. My apartment has become a safe haven for me, where it is easier to cope with my situation. I have more control over what I let in and it's easier to block things out. In the nursing home I had no peace. I wasn't happy at "home" and I was scared to go out. My computer was my only window to the world and even that was bittersweet. Everything I see reminds me of what I had, what I have and what I want. Every good memory has become painful, to some degree. Every time I leave the security of my apartment I risk being bombarded by reminders of my past and feelings of jealousy, shame and regret over what I lost. I can't help but compare myself to all the people I see. I can't help but feel embarrassed by the help I need and jealous of all the things I see other people doing.

I force myself to go out, because I feel like it's the right thing to do. I have been given opportunities to help other people in my situation through my artwork and I feel obligated to do what I can. I know it's not healthy for anyone to be a hermit. We (humanity) all need to socialize and share experiences with other people. I realize that the only way to keep my friends is to be a part of their lives and contribute what I can to my relationships with them. My grandma sometimes gets sad when her friends tell her about all the wonderful things their grandkids are doing. I understand the resentment she sometimes feels, because I know how hard it is for me to feel happy for other people, while I'm feeling miserable about myself. It's those times that I remind her (and myself) that the world is not gong to stop, just because I got hurt and that friendship is about give and take. Yes, it sucks that I'm paralyzed, but my situation shouldn't over shadow everyone else's happiness. I can''t expect people to mope around over what happened to me, nor do I want them too. I try to put my sadness aside and be happy for my friends, because I realize that everything is not about me. I can't expect anyone to want to be around me, if all I ever do is cry, complain and focus on the negative. I often do things that make me uncomfortable for the sake of my friends and family. If I gave in to my emotions and refused to hangout because I didn't feel up to it, I'd never go anywhere. I could easily isolate myself within a bubble and eventually people would stop inviting me and making an effort to include me. I wouldn't blame them.

My aides, nurses, family and friends all encourage me to go out more than I do. It's not to say that I get no enjoyment from going out; it's just that every experience comes with it's own level of sadness, embarrassment or anger. I try to balance pros and cons in my mind before I decide what to do. There are just certain things that are so uncomfortable that the small amount of fun or excitement I might have is greatly out weighed by my discomfort. Events like weddings and baby showers are outings that rank high on my discomfort list. Therefor, I avoid them, unless the people involved are extremely important to me and worth the inner turmoil. A perfect example of this would be my best friend's wedding. Not only did I attend the wedding, but I had to face multiple fears and tackle new experiences. It was my first time traveling by airplane after my accident. It was my first time to Florida, since my accident. It was also the first time I had to spend a night away from home, since my accident. The trip came with a lot of emotional discomfort, stress and anxiety. I put my feelings aside and committed myself to going, because I knew how important it was to my friends (bride & groom). They had both made a lot of sacrifices for me and supported me more than anyone, the first year after my accident. I refused to let my situation be an excuse and met the challenge head on, for the sake of my friends. There are times when I feel like the outcome is more important than my personal feelings and that I'd be selfish to not participate. I try to remind myself of the bigger picture. If I can give something back to those that are constantly giving to me, I put my feelings aside. If I feel like I can help others by letting people into my comfort zone, I do it.

I think it's easy for people to forget or make light of how different everything is for me. I think it's hard for people close to me to understand why I seldom go out. They compare me to the "old Christina," that was super outgoing and always on the run . That Christina no longer exists. My accident has changed the way I see the world and my desires to interact within it. It's often the activities I used to love the most that now bother me the most. The average, some times mundane things can be stressful and not worth doing for me. Things like going to the mall, grocery shopping, doctor visits, hanging out with friends and going out to eat are common activities that most people take for granted, because they don't have all the extra concerns that I do. In some aspects, I know I can't expect people to understand things from my perspective, because they haven't lived it and often don't know enough about paralysis to consider it.

Every time I leave my apartment I have a long list of things to worry about. Not to mention the fact that I can not just pick up go, on a whim, like before. I can't just pop in my car and go. I need help getting ready. I need special equipment and a modified car (ideally) to help transport me. I always have stress and worry over my catheter and the possibility of incontinence. I also have to consider who can accompany me, or help me at my destination. I have to consider accessibility; whether or not there will there be stairs where I'm going. If so, I have to find an alternate entrance, ramp or elevator. There are places that I can no longer go, because of my limitations. Climbing to the top of the Statue of Liberty comes to mind and luckily I have no interest in doing that. However, even places that claim accessibility are often clueless and poorly suited for wheelchairs.

The average person over looks things like curbs, doors, and the dimensions of most things. I don't have the luxury of ignoring small obstacles, like curbs. Dining out also has the added stress of having to be fed (like a baby) in front of countless strangers and most tables at restaurants are either too high or too low to sit close to everyone else. I find shopping a headache, because most stores cram too much stuff into a space and it makes it near impossible to navigate a wheelchair, without knocking things over, crashing into people (who tend to be oblivious to presence wheelchairs) or access areas all together. Try wheeling around Claire's if you don't believe me, or 90% of women's clothing stores. These days, I much rather shop online than go out. Seeing all the cute things I can't wear, like shorts, skirts, bikinis and high heeled shoes, just irks me and the fact that I can't try anything on takes out all the fun for me. Many of my friends in chairs make light of things and are less sensitive and have the mind set that people in chairs can do everything, just in a different way. While there is some truth to that way of thinking, there is also the reality that there are things that people that can not walk, just can't do. Personally, I put quality before quantity and recognize the fact that no matter what I "do" it will be a compromise. I refuse to put myself through discomfort unless I feel the outcome is worth it, or because I have no choice. Everyone deals with paralysis differently and their personality and life before paralysis plays a big role in their life with paralysis. I think it's important to recognize everyone as an individual and realize that every person's coping skills are different. 

Stressed Out!

As you can imagine, I've been dealing with a significant amount of stress since my accident. I would say my day to day stress level is relatively high compared to the average person. I say this based on my past experience and the comparison in the types of problems or stressors I dealt with before my injury versus now. I can also cite examples based on all my friends and family. I realize that all emotions or moods are relative; given that each person has different coping skills and life experience. Stress is not something we can really quantify so it's hard to compare stress levels between people. Not to mention, one man's problem could be another man's blessing.

My entire perspective on life now is different from before my accident and in many ways I feel like a completely different person. My accident changed me both physically and mentally. I think of my life in two parts and feel as though I have lived two separate lives. It's as if the "old Christina" died June 5, 2005 and the "new Christina" emerged. Obviously, this is figurative, because I didn't actually die. However many of my old thought processes and view points "died" and have been replaced with new ones. I imagine even if I were to be cured and on my feet again, that the experience of living with paralysis will have left me forever changed.

I have to admit that despite all the hardships and loss I've endured, the accident made me a much stronger person mentally. I've been able to deal with things that I never thought I could. The human spirit is pretty amazing and I even surprise myself at times. Most people think they know how they will react to stress or trauma, but I've found that a lot of people don't give themselves enough credit. I know for sure that if someone asked me how I'd react to my situation before I was injured, I would have said I'd rather be dead. There have been many times I've thought that since my accident. However, there is a huge difference in imagining something versus having experienced it. Prior to my accident I had never so much as broken a bone. My closet "brush with death" would have been a sprained wrist, four stitches or perhaps my old driving habits. In the past I imagined giving up would be easy in comparison to living with paralysis, but the fear I felt those seconds or minutes I spent under the water that night changed all that. I felt no peace or comfort when I was drowning. There was no white light or sense of calming. In those few moments, I felt overwhelmed with fear, sadness and fear. It's hard to let go of that fear, especially knowing what I went through in the hospital. The thought of returning to that state terrifies me. I was naive in thinking how easy it would be to just give up. The cliche "ignorance is bliss" rings true when I analyze my thoughts before my injury. There's no way of really knowing how much stress you can handle unless you are faced with it. For me, the experience of coming so close to death has made push to stay alive. My driving force is based on wanting to fix my mistakes and my hope for the future. Every time I think I can't possibly go on another day I try and remind myself of everything I've been through and everything I've somehow overcome.

I feel as though paralysis is the source on ninety percent of my stress and it is frustrating trying to figure out ways to cope. There is no guarantee that my paralysis will ever be cured, therefore I live with the fact that no matter what I do there are certain problems that might not ever go away. That is why I say that I have more stress than the average person. The only true solution would be a cure to paralysis. It is especially maddening when people suggest medication or talk therapy to me. I've done both with little success. I take medication, but still feel depressed and anxious. How can I not, given my condition? Isn't it normal to be bothered by paralysis? Who on earth (of sound mind) would be happy to be sick or have a chronic illness? I think it's only logical that my situation bothers me and find it useless to think I'll ever be completely satisfied this way. If there is no remedy for the source of all my problems, all I can do is find new ways to deal with secondary issues created by the underlying cause. I'm sure most people with chronic illnesses can relate. It's difficult to cope with symptoms or outlying issues, when you know you can't get rid of the root of the problem. It can become so overwhelming at times, because I know no matter how many days I get through, there is another day of the same stuff waiting for me. My paralysis effects everything; until it's cured I will always face certain obstacles and stress.

So many of life's stress factors have solutions or resolve themselves with time. Relationships, financial troubles, raising children and even grief can be worked out over time; the pain dulls or solutions are found. In my situation, there are many stressful things that I need to do just to stay alive. As much as it bothers me, I don't have the luxury of moving on, or getting over it. I'm faced with the consequences of my accident day in and day out. Although some things that used to bother me seem ridiculous to me now, at the time they seemed valid. I try and keep that in mind when I talk with family and friends. I can see how easily someone in my situation could slip into cynicism and bitterness. It's hard to be sympathetic when your problems seem so grave in comparison to the people around you. I can't tell you how often I've thought, "I wish those were my problems." It's at those moments I have to remind myself that most of my friends and family will never truly be able to see life from my perspective and I shouldn't fault them for that. I try and think about how I might have reacted before my accident and try my best to recall my past. I push myself to make an effort to take a genuine interest in my loved ones lives. I value them and don't think it's fair to drag them down with me or belittle their problems (regardless of how insignificant or shallow they might seem to me). No one wants to be around a grouch or someone in a constant state of self pity.

I've found ways to not only cope with my paralysis, but how to mask a lot of what I'm going through. In some respect I feel it's not fair to those around me, even if I start to feel overwhelmed by everything I've kept bottled up. Most times I feel disenchanted and see no point in discussing my problems. The majority of stuff that bothers me is directly related to my paralysis such as, needing help with every single little thing. I never get a break from people and never feel like a truly have privacy. I've been injured now for over four years and still haven't figured a way to deal with needing help with highly personal things, such as going to bathroom, being bathed, fed and dressed. Outwardly, I'm not breaking into tears every morning or going into hysterics, but on the inside there's a torrent of emotions running through me. If I do express my discomfort, most people try and brush it off or down play it like it's no big deal. I understand there aren't many right answers or advice to give. No words can ever make me feel 100% better. In fact, most of the time I find myself getting annoyed and/or frustrated with the person, especially if they are able bodied. My able bodied friends and family sometimes think they can imagine what it's like to be paralyzed, but they can't. It is one of those things that you have to live through to understand. The problem with imagining something is that you are limited to drawing from the experiences you've had. There is no experience you could have that compares to certain aspects of paralysis. Often times I can't even find the words to explain what I'm feeling, because it's unlike anything I ever experienced on my feet. It can be very frustrating, because no matter what I use as a comparison, it's just not the same . Sure, you could try and simulate the experience by restraining your limbs; to experience the discomfort of having to have help, or feel the sense of vulnerability. However, such a simulation doesn't even begin to truly mimic what it's like to be paralyzed. A good example of this is how nurse's aides often have to "ride" in a Hoyer lift to help promote empathy for their patients. Although some people might feel nervous at the thought of being suspended in the air, it's nothing close to what it's like for someone like me. For starters, an able bodied person can grab onto the machine for security. I have no way to stop myself from falling or brace myself if I do fall. Secondly, an able bodied person can feel the sling beneath them. I have no sensation below my chest and therefore, if I can't see what's going on it feels as though the rest of my body does not exist. Not to mention the fact that someone taking part in a simulated exercise knows that there discomfort is only temporary. If I knew for sure that I'd be back on my feet, it'd give me a tremendous boost of strength and motivation. It's the difference of an innocent person serving a short jail sentence and being on death row. In both cases the innocent person is being unfairly punished, but the person with a designated time frame has the advantage of knowing that it's temporary. If I knew the date of when a cure will be found I would have the peace of mind in knowing what I'm up against. A set time frame gives you something to look forward; there is an the end. Even if that magical cure date was beyond my lifetime at least I'd have an answer. My situation overwhelms me at times because of the uncertainty of ever getting cured. Granted, my accident is an example that, despite set plans, no one ever really knows there future. Plans give us the illusion of control over our lives, and there are times when life throws in surprises. However, there are certain definites, just as I know for sure that my birthday will be on July 4th, it would be awesome to know when there will be a cure.

One of the many bad things about stress is that can have a direct impact on your health. Stress, like many emotions, it is not limited to just effecting your mood. I think keeping all of my stress bottled up is having a negative effect on my body. Lately, my aides and I have noticed that I'm losing hair. Having long, thick hair that is prone to knots means I'm accustomed to losing a certain amount everyday, just by brushing it. Recently though, it's been much too much to be normal. I know it could be from a dietary deficiency, but I doubt it. My diet is well rounded with fruits, veggies and protein and it hasn't changed drastically in any way. My medicine and environment are stable, so I'm thinking it's got to be stress related. I've also been battling acne since my accident. My skin used to be near flawless, which I had chalked up to good genes. Now I'm beginning to wonder if other factors (like medicine) were keeping my skin so nice or if the problem is only related to my current situation. I have several theories as to the cause; stress being number one. I have been going to a dermatologist and trying various treatments, but none have been very successful. My body has already been through so many changes because of the paralysis and now it seems I'm creating more problems by stressing out. I know emotion/mood has an effect on health and healing, but it is near impossible for me to eliminate the stress, anxiety or sadness I often feel. My hair and skin are not only proof of stress, they are now also a new source of stress. I feel faced with a double edged sword.

I've decided to attempt to lower my stress level by writing letters to a few people close to me. I think some of the things that are bothering me could have solutions, if the people doing them are willing to compromise with me, or change. Although I don't particularly mind arguing, I'm terrible at approaching situations where I have to tell someone they are doing something that bothers me. I'm fine once the ice is broken, but I struggle to bring up the subject. I have the most difficulty when the issue effects me specifically. In other words, if you did something mean or bothersome to my friend, I have no qualms about opening my mouth immediately. I'm fine at speaking up to help others, but I stink at sticking up for myself. I often just bite my tongue or let the frustration roll off my shoulders. I can forgive easily, so minor annoyances often get overlooked. The problem is, if I ignore or avoid things when they are small, they tend to snowball into something big; making it even harder to address or fix issue. It is the one area that I have a hard time expressing myself. It's especially worst with adults and even more so the closer you are to me (relationship wise). Writing down my thoughts gives me the comfort of being able to say almost anything. I also get satisfaction in knowing I've said everything I wanted to say, without getting interrupted or forgotten. So, I'm hoping to break the ice with a few people, about a few issues that are resolvable. I'm hoping the letters will open up the dialog and that I'm able to get a little relief.