Control Freak, With No Control

One of the many annoying things about being completely paralyzed, and totally dependent on others is the fact I can't take care of my own things. Not being able to be self sufficient with my personal hygiene and toileting needs are by far, the worst most embarrassing, degrading and invasive aspects of being paralyzed. Not being able to take myself to the bathroom, wash, dress, groom & feed myself are the aspects of being paralyzed I hate most. However, not being able to take care of my things, and maintain my living space is the second worst aspect of not being able to do anything.

Even though I have help from people (aides, nurses, friends & family) and try my best to direct how I would like things done, and where things should go, I'm forever frustrated because no matter what, no one ever manages to do things exactly the way I would like. It boils down to two key problems. First off, there are just too many "hands in the pot." On a daily basis I've got three, to four different people helping me. Even though I try my best to be organized and label everything I possibly can, things routinely get misplaced. Either the person helping me doesn't put the item away (right away), and the item ends up sitting in the wrong spot for days (and then potentially gets moved by someone else- in the effort to straighten up) or it gets put away in the wrong place all together. The second annoying thing that is most frustrating is that most times things are not as clean, or orderly as I'd normlly keep them, if I could care for them myself. The old adage "if you want something done right, do it yourself" most certainly applies to me, for basically everything. However, my paralysis keeps me from being able to do anything besides giving verbal directions and asking for help, and then hope for the best.

I try so hard not to lose my temper, get impatient and to not let "the little things" get to me. In the larger scope of everything I deal with (and am forced to endure), thanks to paralysis, I really can't afford to obsess over material things. Rationally, logically, I understand my stuff is just stuff. At best, my material possessions offer me a small amount of comfort and distraction. They don't really impact, or influence the bigger, more pressing dilemmas, physical limitations and burdens I deal with. I have enough on my mental "plate" at any given moment, that would ordinarily seem completely overwhelming to the average individual. If I let myself get mad or upset, every time I come out of my room to see a dirty kitchen, or my aides can't find something I'm looking for, I would go absolutely mad.

I think what makes living with paralysis especially hard for me, is the type of person I was before my injury. When I was on my feet, living independently I had a classic "A-type" personality. I was what you might call, a "control freak," and definite over achiever. I planned my life down to the nano-second. I put a lot of pressure on myself to succeed in everything I did: as a student, as a teacher, as a daughter, as a friend, as a person. I hid every self perceived flaw and tried to be as close to "perfection" as possible. Being organized, and a planner helped me thrive and even though I often balanced a lot on my plate, I managed well.

I remember when I was in college, my friends and family would tease me, because every semester I created a color coded grid, allotting time for everything: from class, to study time, to work, to sleep, to time with my boyfriend. I kept my time management chart with me at all times (in my school planners) and had several posted (one in my bedroom and one posted at my boyfriend's). I always used green to signify "boyfriend time." My ex was a much more laid back, and a "go with the flow" kind of person, so he was always forever getting frustrated with me. Looking back, it was a bit over the top, but I know it helped to keep me focused and on task. I ended up graduating from college with a 3.9 GPA, and I definitely attribute that to my ability to multi-task and micro manage my life.

Being organized also definitely helped me to be a good teacher. I had my lessons planned out months in advance (so I was never caught off guard, or left scratching my head for things to do). Everything in my classroom had its place and my students were each assigned roles (which I alternated from month to month, based on my seating charts). Even though I had nearly five hundred students, in twenty different classes, I always knew what I was doing with each group, and easily juggled up to eight or nine different projects, during any given week. My classroom ran like clockwork, which helped my students to stay on task and made it easy to maintain control and give directions.

By the time I had started teaching, I had graduated from using my paper college planner (highlighters and tons of post-its) to a hand held electronic organizer (Palm Pilot). My Palm Pilot was my life saver. I relied heavily on it, to balance my time between work, graduate classes, family time, going to the gym, running errands and my social life. My apartment was always spotless. I had a particular way of doing everything: cleaning, laundry, keeping records, paying bills, etc. I had a particular way for folding my clothes. My closet was organized by color, and grouped according to the various types of clothing (strapless shirts, short sleeve shirts, long sleeve shirts, skirts, capris, kakhis, dress pants & jeans). My dvds, and cds were alphabetized (since I owned hundreds). I kept all my receipts, and paperwork neatly filed in filing cabinets. My books shelves were organized by topic. Everything was easy to find.

I tried not to let things pile up, and cleaned up after myself everyday. I enjoyed coming home to a clean living space. I loved the crisp, clean scent of Clorox wipes, Swiffer solution, laundry detergent, Febreeze and Glade Plug-ins. I liked being able to always know where my things were, and to have everything tidy, uniform, and in its place. I always felt more peaceful and relaxed when everything was put away and everything was clutter free and sparkling. I tried to keep my home and classroom clean and organized at all times, so if an uninvited guest, or surprise visitor (like my principal- at work obviously) showed up, I wouldn't feel caught of guard or embarrassed.

My paralysis has taken nearly every ounce of control, and power away from me. The only thing I can do myself (once I get set up) is paint, write, handle my finances, shopping and direct the people helping me. If it weren't for the computer, I would have an even smaller list. Since I can't handle, or put away my own things, I have to rely on my memory, for keeping track of everything. It's critical that my helpers follow through with my directions, so that there is consistancy and I know where everything SHOULD be. Even though my family, friends and aides try their best to follow directions, everyone has his/her own little quirks and their own standard of cleanliness. No one person does things exactly as I would. I've had to learn to bite my tongue many, many times and learn how to be flexible and to go with the flow. Despite the fact that I have vastly expanded my tolerance for patience, there I still some days when I just want to rip my hair out & scream.

There are some things that require demonstration. No matter how great, or poor my vocabulary is (in English or Spanish) there are just times when I wish I could just SHOW the person helping me what I want, or what I mean. At times it is exasperating having to explain, and re-explain myself. There are many times when I have an aide or nurse helping me, but I end up calling my mother or sister over, because they know what to do, or how to do it. It's much quicker (and less frustrating) to have someone who knows what I want to teach, or demonstrate to my aide how to do what I want. It saves me a lot of time and aggravation.

The other thing that has been so difficult for me since my accident is having to share my space (and all of my things) with other people. For one, I live in a two bedroom, two bathroom apartment, so there's not a tremendous amount of space. My mom and sister live with me and although they've gotten better over the years, their definition of "clean" and "organized" doesn't usually stand up to my picky expectations. Then you have to consider the fact that I have several aides and nurses, which also touch, clean and put away my things. It only takes one person to misplace something, and I'm stuck playing detective, hunting through the entire apartment. Plus, almost all the furniture and stuff (in general) in the apartment is mine. I expect the common areas which we share, like the living room and kitchen to be clean. It irks me when they're not because I feel embarrassed by a messy home (which my aides, nurses & visitors see) and it also ticks me off when I feel as though my things aren't being cared for properly. Although I'm not miserly or greedy, I do take pride in the things I buy and own. I think it's unfair (and frustrating) when I see my things being misused, or neglected.

Certain things that bother me, like crumbs on the counter, half empty cups, food wrappers, shoes and articles of clothing lying around, don't seem bother my mom & sister. It's little, in the scheme of things, but it's hard not to get annoyed or angry. I hardly ever see their room or bathroom, but do occasionally ask my aides and nurses about their conditions. I feel it's my responsibility (but get annoyed because they are adults & feel I shouldn't need to check up after them- or nag them) because it's my apartment. They might not be embarrassed by ring stains in the toilet, or toothpaste in the sink, but I am. In my house growing up (with my dad & stepdad) laziness, and sloppiness weren't tolerated. I used to groan & complain as a kid, but now I understand it's because they worked hard for what we had and wanted my brother and I to respect that fact, and help them maintain things.

I was taught (at home & at school) that people judge you by your appearance. If you dress sloppy and keep a messy home, people are bound to think less of you. First impressions matter (in matters of building personal and professional relationships and in getting a job), how you speak, carry yourself and maintain your home all reflect on the type of person you are. I've always held those lessons close to my heart. I always want to put my best face forward, in every aspect of my life. I try to take pride in myself (although it's challenging given my condition) and my things and want others to take notice of that fact.

It's frustrating having to share my space (although my family is very supportive & comforting in many ways- I'd much prefer to be independent). It's hard having so many other people touch me and my things. I try my best to maintain control over what I can, but know there's only so much I can do. I can't realistically hold my family, aides and nurses to my personal standards, and expect them to be as nit picky as I am. I know that's too much to ask, and every time I try, I only end up getting more frustrated, dissolutioned and agitated. My accident made me go from being a control freak, to having absolutely no control whatsoever overnight. It hasn't been an easy transition, learning to compromise, lower my expectations and having to just "let go" of certain things.

If anything, the biggest lesson my accident has taught me, is that control is just an illusion. We all think we have control over our lives, but in reality all the best plans in the world can be shattered in an instant. Control is a coping mechanism we each use, to give our lives order and purpose. Unfortunately, anyone can lose control (over everything) easier, and more quickly than most people care to acknowledge or realize. Even after everything I've been through, and as helpless as I am, I'm still guilty of trying to be "in control" of what little I can. I know at times it might be futile, or even possibly end up blowing up in my face (when things don't turn out the way I "planned"- nothing rarely ever does), but it's ingrained in my nature and a hard habit to break.


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Life Is Unpredictable & Full Of Irony

Today marked the six year "anniversary" of my accident. It's certainly not an anniversary worth celebrating, but one that is impossible to ever forget, or ignore. This year brought with it a twist of surprise, and added sentimental value. Six years ago, one simple mistake, would change my life forever. If my accident has taught me anything, it is how very unpredictable life can be.

This year, marks the first completion of the weekly cycle. Meaning, this is the first year, since my accident, where the date, and day it falls on, is the same as on my accident. My accident happened in the very early hours, of Sunday, June 5th, 2005. This year, June 5th, also landed on a Sunday. Last night, I couldn't help but feel an added twinge of grief, as I replayed the memories of that "fateful" Saturday night, where my life got flipped upside down. To this day, I'm unsure of the precise time of my accident, but know the first hours of that Sunday, were spent in the Emergency room, terrified of what was happening, and in shock of what I'd done. That weekend, my last hours on my feet, and my first few hours paralyzed, will forever be etched into my mind. It is a day I wish I could scrub from memory.

Ever since the moment my neck snapped, I have been replaying those last few memories, on my feet, in my head, and fantasizing how different my life might be, if I had never gone to that party, never drunk, or never dove. I have reviewed, replayed, relived, analyzed, questioned, and scrutinized every second, of that final day on my feet. I have beat myself up, and find it hard to be forgiving, to myself, for my foolish actions. I have wondered, "What if..." to a million different scenarios, and have searched in vain for reasons, or self explanations, for why I chose to do, what I did. The lists go on, and on: we should've never gone to that party, I should've never drank, I should've had more to eat, I should've waited to go swimming, I should've used the ladder, I should've never dove. Each action, seems more stupid, worse and irresponsible than the one before it. The truth is, there are no reasons, or good explanations, and even if there were, it wouldn't change the outcome.

Although I never intended to do harm to myself, or anyone, my actions that day, have caused me, and my loved ones a tremendous amount of pain and grief. The combination of many common mistakes, resulted in a gigantic disaster. One moment I was happily, enjoying a self sufficient adult life, the next I was crippled beyond saving. I went from having everything I wanted, to my worst nightmare, overnight. While my life has been the most permanently effected, my accident has had a rippling effect, on everyone that was closest to me, at the time of the accident.

My accident created a horrible strain on my relationships, with many of the people I love. The sheer magnitude of loss, the fear of the uncertain, and the reality of the irreversible nature of my injury, effected everyone I love. The Christina I was, died the day of my accident, and it's been a very bumpy rode, living a completely new reality, being a completely new person. My accident has changed the way I can interact with the people I love, and has forced limitations on what I can do, and how much of a role I can play, in the lives of my family and friends. I've had to come to terms with my new life, and they've had to come to terms with the new me.

My family and friends have at times been my biggest obstacle, while at other times my biggest supporters. I have had many fights, falling outs, and disagreements, with the people closest to me. Thankfully, most of my relationships have stood the test of time, and have whethered this storm, called paralysis. Most of my loved ones have stayed right along side me, through laughs and tears, through thick and through thin. Although they might not all get along with one another, or see eye to eye, they have put aside their differences and rallied behind me. I am so grateful for my family and friends. I feel so blessed, to have so many people that love, and support me.

The rode has been especially difficult, these last couple of years, and I know for sure, I'd be long dead, if it were not for the many loving hands and hearts, that prop me up, and give me strength. There are a few people, that I have lost through this all, and for them, all I can say is sorry. I wish I knew a way to fix my mistakes, or how to repay them. It makes me sad, to think I am missing out, on being a part of their lives, and vice versa. All I can do, is try my best, with whatever time I have left.

2,190 days ago, I thought by now I'd be married to Jimmy, we'd have a couple of kids and I'd be a veteran teacher. I never thought for a moment, that life could throw me a curve ball, or that life would not fall into place, like I had planned. I thought I'd be healthy, and able to care for myself, until I was old and grey. The future seemed brighter than ever, and full of a million possibilities. I was the happiest I had ever been.

2,191 days ago, my entire life was crumbling in front of me, and my future was terrifyingly uncertain. I was newly paralyzed. I was vulnerable and scared. I was in and out of consciousness, and on the verge of death. I knew I might lose everything. I was in tremendous pain, and utter shock. I couldn't imagine a worse situation, a worse moment. I prayed with all my being, that somehow things would be ok. My loved ones were fighting, blaming, and fracturing. I didn't know who to turn to, or what to do.

Today, was not how ever imagined it to be; not during my best, or worst days. I spent the day with Jimmy, my exboyfriend. It was bittersweet, and strangely ironic, spending today with him. It was a mix of extreme high, and extreme low emotions, for both of us, as we remembered a day that changed both our lives, forever. Although we are no longer together, we will always love each other, and share a special bond. He is still one of my closest, dearest friends, with whom I feel I can be most open. He is the one that saved my life, that night, and pulled me from the water. Even though we split (romantically) months after my accident, we have been perpetually drawn back to one another, over these past six years. My accident has changed us both in profound ways, but despite everything, we share a bond, unlike any other.

Six years ago, I had bought him a birthday cake, that we had planned to share together, that coming Monday (6/6/2005), in celebration of his twenty third birthday. Those plans, like so many others, were ruined, and never came to fruition, because of my accident. I have always felt like my accident stained his birthday, with such a horrible memory. I have always wished things could've turned out differently for us, and that we would be able to share a happy memory, for his birthday. Today that wish came true.

Although today was not the ideal day, of how I wished to be spending Jimmy's birthday, I was thankful nonetheless. I feel blessed to have him back in my life, even if it's just as friends. Of course, I'll always wish for more; for both of us. However, I've come to accept my reality, for what it is, and know no amount of wishing can make it be, what I want it to be. I tried my best to enjoy our time together, despite my longings, and limitations. I tried to savor what I could, and be glad to have sitting beside me.

I don't know what the future holds for me, for Jimmy, or "us" for that matter. I gave up trying to predict the future a long time ago. All I know is that, despite my cold sweats, and relentless chills, I was able to have a few laughs, and enjoy seeing his smile. It felt good, taking a bite into a piece of his birthday cake, and for as much as it stung, to not be able to do everything I wished we could be doing, I am so glad we spent today together. Today was a day of closure, and an opportunity to create a positive memory. I hope we can make a few more happy memories together, before this life is over.


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"A Gradual Awakening"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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





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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.

In The Blink Of An Eye

As many of you know, I've been struggling lately, with my situation, and life in general. Living with paralysis (especially a high level, complete spinal cord injury) is an ongoing struggle. Last weekend marked the ninth anniversary of 9/11, and it got me thinking of how fleeting life really is. So much has changed for me, since that fateful day, it's almost unbelievable. I'm certain, if anyone would have told me then, what I know now, about the world and my personal life, I would've have surely thought they were insane. Both 9/11 and my accident, have been hard realities to cope with. Both situations are life lessons, in how little control we have over our own lives, and how quickly life can change, or even end.

Although I thankfully did not lose a loved one that day, I know of people that have, within my community and even had a student, that had lost her father. I'm sure, for those families that did lose a loved one, the harsh reality of life's transient nature is still a raw, painful reality. While I'm sure nine years seems like a short time, to the victims families, I'm guessing most people have put the events of that day in the back of their minds. Yes, everyone else pays their respects, and honors 9/11 as a memorial, but I doubt most people take the time to reflect on the lessons of that day, or give thanks for the fact that they are still healthy, and alive. For most people, the after effects of 9/11 are a distant memory, as is the thought that each day is a gift. People tend to forget life's lessons, unless they have a constant reminder of its consequences. I mention my accident, as an example, because I live with the after effects of that day, every day. I can't put that day in the back of my mind, just as those people who were directly effected, by the 9/11 attacks, will be reminded of that day, every day.

I'm sure everyone old enough to remember the day of September 11, 2001, will never forget the details of that day. Living on the East Coast, New Jersey specifically, had a huge impact on how I was effected personally, by the terror attacks of that day, and how the attacks still effect me to this day. The Twin Towers, and lower Manhattan, had been a familiar sight my entire life. Growing up in Union County, I could often see the NY skyline, on clear days. My family moved a bit further south, when I entered high school, but about half of my neighbors in Old Bridge were all former New Yorkers, and most of them commute to the city every morning, by bus. My senior year, I dated a boy from Queens and went into New York regularly. He taught me how to navigate the subway system, which I love, and miss riding. As a college student, I took the train into the city at least once a month, my entire four years. I always had assignments to complete, by visiting the museums and galleries, plus I loved spending time downtown in Chinatown and Little Italy. Many times, I'd take the train into Manhattan by myself, and spend all day at the M.E.T. working on term papers, or just for fun. One of my favorite things to do was bring my sketchbook with me and just people watch, and wander the Egyptian and Asian sections of the M.E.T. Chinatown was my spot for my anime fix. Back then (1999-2003), anime (Japanese animation) was nowhere near as popular as it is now, and fans had to wait months, or years for current shows to be imported. I had a favorite shop on Lafayette St., where I'd buy ten to twenty VHS tapes at a clip. I was such a good customer that the shop keepers actually recognized me by face. A perfect day would be spent with my best friends, perusing the Chinatown shops, for anime, posters and memorabilia, then hit Little Italy for some coconut gelato, and take the train home, with my arms full of bags stuffed with all of my finds.

It just so happens, that I was taking a black & white photography course, in the fall of 2001. I had gone to lower Manhattan the Sunday before the attacks, to buy all of my photography supplies. That train ride was the last time I saw the towers standing, in person. Looking back, I'd like to kick myself for not photographing them, but who could've imagined they wouldn't always be there? The following day, my brother and ex-boyfriend flew into Newark airport, on a return trip, from FL and I remember my mom (step-mom) mentioning something about a small fire at the airport, which also felt eerie the following day, when we discovered one of the planes used in the attacks, had departed from Newark (the airport I've used most frequently in my life). Tuesday morning, I was on my normal commute to school, stuck in rush hour traffic, when the woman on Hot 97 (local music station) reported a plane hitting one of the Twin Towers. I distinctly remember thinking, "What moron flies that low, near the city?", assuming it was a small personal plane (in all honesty, I pictured an old fashioned bi-plane). Irregardless, I figured my rap station wasn't the best source for news, and decided to switch to a local news station. When I changed the station, an eyewitness was in mid conversation describing the crash, when he suddenly says, "Oh S**t, another plane just hit the buildings!" The announcer immediately cut the man off and started fumbling around, saying how the station couldn't confirm the man's claims. Within seconds however, the announcer says, that in fact, they had confirmed the eyewitness report with the AP. In that instant, everything changed. It was as if everyone around me, including the announcer (by the tone of his voice), had realized that there was no way that these crashes could be mistakes; these were deliberate attacks. People started pulling over and hopping out of their cars and whipping out cell phones, I imagine, in effort to locate family members, or friends. I continued on my way to school, and met up with a professor, that was my partner for a Freshman course, we were assigned to co-teach that morning. The campus was a bizzar mix of silence and chaos. There were some people still in classrooms, completely unaware of what was going on. In contrast, there were other areas where people were buzzing around, frantically trying to call loved ones, or groups of people, huddled around radios. The professor and I decided to head over to the University Center, where there were several tvs. It was already crowded in the lobby as we entered, and everyone was glued to their spot, looking up at the pictures of the black smoke, billowing out the side of the towers. I can remember thinking, "It'll be ok. They'll evacuate the buildings and be able to repair the damage." Only a few moments after that thought, I watched the first tower come tumbling down. The whole crowd gasped, and people started crying (including me), and hugging strangers. Not long after, the second tower collapsed, and we decided to head back to the office, still in shock.

Naturally, the University announced it would be canceling classes, so the professor and I went to our classroom to inform any students that might show up unaware. The eight o'clock classes were all letting out, and most of those people were learning about the attacks for the first time. Some of our students showed up, and I remember one girl in particular, that was in total distress, because they had closed off the city, and she had no way home and had not been able to reach her family by phone. I offered for her to come stay with me, if she needed too, but she declined. Thankfully, her family was fine, in the end. Back at the office, a good friend of mine, was also in a panic, over his dad, who was also eventually found. I called my boyfriend (at the time), to see if he had heard all that was going on. He worked for the phone company, so I was unsure if he'd had a chance to hear the news (because he was constantly in and out of his van, and various buildings). He was working in Newark at the time, and turns out that he was actually able to witnessed the buildings fall firsthand. It all seemed so surreal. With classes canceled, and work closing (I worked on campus), I decided to track down my best friend. It happened to be her twentieth birthday that day. Once I found her, and her boyfriend, we headed to her house and spent the rest of the day, glued to CNN. I'm sure it's one birthday she'll never forget.

In the weeks that followed, I stopped watching the news. I had begun having nightmares, of the poor people jumping from the burning buildings. I couldn't stomach seeing the images after a few days. Instead, I decided to go around New Jersey, and photograph all the makeshift memorials, that had popped up everywhere. The NJ Historical Society had asked my professor if he would help them document the memorials. Both my professor and I were interviewed byNJN, which is a a local tv station, about our roles in the project. A few of my classmates and I had our photographs displayed at the NJ Historical Society, in Newark, as part of a tribute exhibition. Ironically, the thing I remember most about the exhibit, was not so much the art, as book they had, listing all the victims from New Jersey and their respective towns. I can remember flipping through the pages and thinking about all the families that had been impacted, and how many lived in town I knew. It was a very moving experience.

About a week after the attacks, my stepmother began working with FEMA, as a crisis counselor. She worked under a special grant, named Project Phoenix, that provided free counseling services for victims' families, survivors and all the first responders. They were set up in Jersey City, and would ferry the people back and forth, to allow people to place mementos at the sight, and grieve. My mom can't talk about it much (for confidentiality reasons), but I remember some of the horrific descriptions of the site itself and can only imagine the terribly sad things she witnessed. I was (still am) very proud of her, for the work she did under that grant, which lasted at least a year (I'm a bit fuzzy on details). I'm sure she feels that way too. So many people (myself included) want to help, in a time of crisis, but don't know how, or can't. It's horrible, feeling helpless. The only downside (if you consider it that way), to my mom working at ground zero, is that she is now one of thousands, that has to be concerned (and has been examined for) with health related issues, due to all the toxins that were in the air. I'm sure all the first responders, survivors, and people like my mom, have long lasting emotional, and/or physical reminders of that day.

When I think about 9/11, or my accident, I can't help but still be in shock at how fast life can change. My whole life I've heard people say stuff, like "You never know, I could get hit by a bus tomorrow." However, when you're young and healthy, it's so easy to take life for granted. The unfortunate truth of the matter is, life can change in the blink of an eye; it doesn't matter how young, or healthy you are. Both September 11, 2001 and my accident are proof of that fact. The people that died in those towers were minding their own business, working. I'm sure the great majority woke up that morning, and started the day like any other day, and naturally, had no clue that they would never return home again. Just as, a split second mistake changed my life forever. One minute, I was healthy, happy, on my feet, and the next I was paralyzed, forever dependent on others, and all of my dreams were shattered. Although I didn't die, there is a great part of me that feels missing, and I do mourn over the person I was. In many ways, my life ended the moment I broke my neck; the life I had built, and the plans I had made. In retrospect, I wish I would have savored every moment on my feet. Knowing what I know now, magnifies all of my regrets. Every mistake, moment, or opportunity I didn't take, or missed out, seems intensified, because I know I'll never be able to have a second chance at experiencing them. Once time has passed, you can never get it back.

Some people try to protect themselves from disaster by avoiding life all together. I can remember my parents being wary of me going back into the city, after 9/11, and didn't agree with me traveling overseas in 2003. They were certainly not alone in their fears. Many people to this day, avoid big cities and/or flying, for fear of attack. I don't agree with that mentality, because I think it plays into what terrorists want; for us to stop living. I think living in fear, is the exact opposite of the lessons we should learn from catastrophic, life changing events. That is, that life is temporary, and that no one knows what tomorrow will bring. As cliche as that might sound, it is the truth and there are a million ways that life can change, and catch you completely off guard. Of course, it is important to be cautious, and mindful of the decisions you make, but it is equally important to recognize that there are always going to be factors outside of your control. For those people that are fortunate enough to be healthy and be able to care for themselves, the message, is to really enjoy life, and recognize how lucky you truly are. Once your health is gone, all the "problems" you think you have become secondary. Once you're gone, you're gone, so embrace your health and life, while you have it. Take the time to reflect and be grateful for what matters most, your health and the people you love.

Regret & Forgiveness

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

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

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

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

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

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

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

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

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

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

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


- Posted using BlogPress from my iPhone

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.