Sick of Being Sick

I've been fighting cold sweats, fever and overall discomfort for a couple of weeks now. I finally decided to bite the bullet and take an antibiotic. I try to avoid them, as they almost always reek havoc with my stomach. On top of that, I'm waking up every couple of hours from the time I try to fall asleep, to the time I have to wake up. I haven't even been able to take a nap lately. I'm no stranger to insomnia, it's just that I'm more accustom to having racing thoughts keep me awake, which I try my best to turn off. Recently though it's more discomfort waking me up than anything else. It's especially annoying not being able to toss, turn or reposition myself. As it is, I've had to adjust to sleeping on my back, something I never did before my accident. I can honestly say, I haven't slept longer than four hours straight since I was on my feet and eventually, it always catches up with me.

Living in hospitals, rehab and the nursing home was the worst, because it was frightening being paralyzed and on my own (no family or friends with me) at night. Not to mention, perpetually noisy. I had zero control over the schedule or the waves of medical staff that constantly came and went. Living in my own apartment has helped to decrease my nighttime stress and there's certainly less noise. All in all, I still wake up tired most mornings. Part of the problem is the fact that I can't move, like the average person. Although I don't always feel uncomfortable, my body reacts to being in one position for too long and causes my legs to spasm, or I get sweaty or I get a weird tingly sensation, which eventually wakes me up. Either that, or I get too cold, or too hot, or my hair bothers me. Naturally, I need help to get repositioned. Sometimes it takes a few minutes for someone to hear me (especially if they're sleeping) and I end up being wide awake by the time the person leaves my room. At the nursing home, it was procedure to get turned every two hours (I felt like a rotisserie chicken half the time). I'd be lucky if I could fall back asleep before the aides would come again and cycle continued on and on, every night. Despite all my efforts (medication, meditation, white noise, etc.) of battling my insomnia, it's an on going issue.

Being over tired often sets the tone for my day. There's many days that my lack of sleep seems to zap me of all motivation. The first few years post accident, I got up in my wheelchair every day (regardless of how I felt, partly because I had no choice in the facilities). Ever since I got a bedsore on my upper thigh in 2008, sitting up has become hit or miss. Sometimes I feel fine and other times I feel like I can't get back into bed or lay down fast enough. It makes me not want to get out of bed at all. For the past six months (give or take) I've been staying in bed 5-6 days per week. My nurses, aides & family sometimes get annoyed with me constantly being in bed, because they worry about my overall physical and mental well being. I understand that it's good for my body to sit in my chair, for blood flow, digestion and breathing. However, I'm already forced to sit up for two to three hours on the days my nurse comes, so on those days, I'm ready to lay down once they leave. I don't see the point in going through the hassle of getting fully dressed and transferred into my chair, only to want to reverse the process an hour later. It's just not worth it to me.

Ironically, I probably sit up the same amount of time in my bed as the days I get up into my chair. The difference is, I can lie down when ever I want, in bed. If I'm in my chair, I need to be transferred and partially undressed. My catheter bags also need to be switched and cleaned. Given the hassle and the fact that my aides come at set times, getting up just becomes less appealing, especially if I'm already tired, or feeling sick. On top of all that, the only thing I can't do in bed is paint. The list of activities I can do on my own is pretty slim, so most days it doesn't really matter if I'm sitting in a bed, or a chair. I can even do most things while laying down: watch tv, read, talk on the phone, use my iPad, control my PC by mouse & play Nintendo DS.

I could understand concern if I was completely lethargic and apathetic and spent my entire days sleeping or being zoned out. To me, that's giving up and it's not the case with me. Most people just fail to consider that there's still a big portion of my day that is out of my control and spent doing things I'd rather not be doing. I can't do things on a whim, or instantaneously, because I'm always relying on someone else to assist me. On top of that, there's activities of daily life (ADLs) that are simple to a healthy person, but have become stressful and traumatic for me. Gong to the bathroom is the number one stressor in my life. I don't even usually discuss it in any detail, out of embarrassment and shame. Unfortunately, I have no choice in the matter. I have to eat, therefore I have to go the bathroom. Something that should be a personal, private matter, now practically dictates my schedule and involves several people.

Most people probably don't even consider how paralysis (high level injuries and severe degenerative diseases) can effect every tiny detail of someone's life. I think it's too disturbing, or sad for some people to even want to know. Then there's the people who could care less, because it has no impact on their lives. The truth is, anyone could be in my shoes. It took less than a minute for my life to change, forever. It frustrates me that most people don't see how lucky they are, just to be able to care for themselves. Things that were once second nature to me, like brushing my teeth, taking a shower or going to the bathroom, have become things I dread.

I cringe every other night, because I know the nurse is coming the next morning. Having to have a permanent catheter is bad enough, but needing a bowel regimen makes me want to disappear into the floor and never eat again. It's not something that's easy to empathize with, because most people don't even know what a bowel regimen (or bowel program) is and because the normal person has sensation. It can't be that bad right? Yes. Yes, it can. For starters, just the fact that another human being has to assist me with something I had been doing solo since I was probably three years old, is stressful. It's not an aspect of life I've ever been comfortable with, and now my feelings of embarrassment and stress are off the charts. Secondly, I can't feel any part of the process. I feel no urge to go, no indication that I've gone and no relief or comfort in having gone. A nurse has to essentially, manually stimulate my body to go and then continue to check inside to see if it's worked. I'm usually physically uncomfortable the entire time, because it forces my blood pressure to rise and the commode is not very comfortable. The whole ordeal can take up to two hours, and I have to go through it every other day. It's also very emotionally draining for me. Just imagine having a stranger (at first. I have several nurses that I've gotten to know over time) sit with you in the bathroom while you go, and then clean your bottom for you. It's horrific, even though that scenario doesn't cover the full extent of the regimen.

Even with a bowel regimen, there's always the wonderful anxiety that comes with being incontinent, and never knowing when or if my body may decide to "go" for no reason at all. Having to wear Depends in your twenties and thirties, is not an easy pill to swallow. Having the fear of an accident is on my mind every day, and especially if I have plans to go out or have people over. The threat of it happening is very real and often completely unpredictable. I try to avoid know causes, like antibiotics, but there have been many, many days where I've needed to cancel plans last minute. Either for fear of incontinence, or feeling ill if things don't go smoothly. I try my best to ignore it all when it's going on, but I'm never that successful. After that, I have my shower. Yay. Yet another person to see me naked and have to wash (aka touch) every inch of me. Then it's all topped off with having someone else brush my teeth, hair and feed me breakfast (like an infant). It's exhausting. Unfortunately, it hasn't gotten any easier over time, for me to deal with most of the daily ADLs.

I almost never discuss my personal care with people other than nurses, aides and a handful of friends and family. I'm writing about it today, because I'm just so fed up. I feel like people should know EVERY aspect of living with paralysis. Sometimes I feel like going outside to find a random huge crowd of people and start shouting through a megaphone all of the stuff I deal with, everyday. It also makes it hard for me to be sympathetic to most people (healthy), because their "problems" all seem so trivial and stupid to me. I'd welcome most things people complaint about, in exchange for being able to care for myself. I get so angry and upset, because people expect me to live like this and either have no clue what my (or other people in my situation) life is really like, or if they do know (medical professionals), they still have no cure, or solution. "Just deal with it, and move on."

The worst is when people tell me, "well, at least you're still alive." Yeah. Great! It's not exactly easy to just forget twenty four years of a "normal" life and just be content with living, for the sake of being alive. The fact of the matter is, I'm left with few choices. If I want to "move on" with my life, it means having to deal with ALL the stressors, every second of the day. It means acknowledging the fact that I'll be chronically tired, often sick (UTIs are very common with catheters, despite how clean you are), have instances of incontinence, reliant on medication, need assistance from others, be susceptible to skin break down, be at risk of dying from respiratory infections, weakening bones, and inevitably have to do things that make me very uncomfortable (for my own health and cleanliness). It's my life. Take it or leave it. I don't get a breather. I can't remove myself from the situation. There will be many days that I'm sad, ill, or don't want to bothered with anyone, or anything that's not absolutely necessary. I can't understand why or how people still expect more.

Just because I'm feeling ill or tired, or just don't want to get out of bed, doesn't mean I'm giving up. Although I might not be as busy as I was the first two years I've lived in my apartment (2007-2009), I still try my best to be productive. I'm still painting, albeit much less frequently. However, I've continued to look for ways to share my artwork and have been exploring digital art. I work on my website from time to time and try to post at least two blogs per month. On top of that, I'm always networking and hunting for ways to help advocate for a cure. My intentions are always to raise awareness. I don't strive to be an inspiration or motivator for other disabled people. Other people with disabilities (paralysis specifically) already know what it's like to deal with my day to day struggles. Either that, or they were born disabled and have a totally different perspective.

I can't speak for anyone else, but I can educate people on the facts and use my life as an example. I don't expect other people to cope the way I do. Every person has their own story. Every person that's had a spinal cord injury goes through a unique experience. Your lifestyle, age and health all factor into how much loss you have to face. Each injury is unique. My goal is solely to educate the general public about paralysis and open people's eyes to what it takes to keep moving forward and all the obstacles that come along with paralysis. No one should have to live with paralysis and I feel it's important that people understand why we so desperately need a cure.

Personally, I'm at a point in my life (and my injury) where I have a tiny glimmer of hope left for a cure(that I'll be able to benefit from), but live each day at a time. In my mind, I'll be paralyzed until I die. If a cure is found, that'll be fantastic, but I have to face the reality of the present. I can't plan my life around "someday", "might", or "if." The truth of the matter is that, most days I don't feel motivated. Many days seem overwhelming. I'm sick of being sick. It's incredibly hard having a chronic condition. There are certain things that are inevitable and at times it's hard to face the day, because I know what's coming. It's never easy, but I try my best. I think that's good enough.

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Not Good Enough

A poem (for lack of a better word. I don't exactly follow a set pattern or style. More like random thoughts...) I wrote a couple of months ago. I rather not go into detail on my thoughts behind it. Interpretation is up to you. Just thought I'd share:


Guess I wasn't good enough
Not enough to be your all
You've cut me deeper than you'll ever know
The pain runs through, down to my soul

I was holding on to a fantasy
All the while, you moved on
False hope
False words

Guess you were never who I thought you were
I just kept holding on
Don't know what I'd do if I were you
Things to good to be true

I was clinging to your memory
Seems I had things wrong
Broken promises
Broken dreams

Guess you were never mine
Thought all I needed was to do my time
The past pushed me on
Those illusions are all gone

You choose your path
My heart snaps
Lost love
Lost hope

Guess it's my fault for losing you
Don't know what I'm going to do
Blame myself for everything 
Can't see what good the future brings

Bittersweet memories
Erase them from my mind
Impossible to stop
Impossible to run away

Controversy in Dying

I was watching CNN the other day and a story about a controversial billboard caught my attention. The billboard over looks Rt. 22 in Hillside, NJ. I grew up in Hillside and traveled on that stretch of Rt. 22 nearly my whole life. Naturally, it peaked my interest to hear what was going on in my old neighborhood. It turns out that the billboard is currently advertising for a nationwide organization (one of it's chapters is based here in NJ), called the "Final Exit Network." The group is primarily volunteer based organization, which provides information, counseling services and advocates for the right for people to die with dignity. The billboard that they are sponsoring is visually very simple, no pictures, just text on a plain black background, six simple words. The simplicity of the design makes a direct, powerful impact on the reader and it is stirring up a ton of controversy. The sign reads, "My Life, My Death, My Choice" with the group's website (finalexitnetwork.org) printed below.

I've read several articles on the story and in all of interviews I've read, the founder of the NJ chapter, Rob Levine admits that The Final Exit billboard is meant to stir up dialogue about a patient's right to decide his/her care. So far, it's doing a good job. Critics say it promotes death and suicide and some groups want it taken down (the local Catholic community, for example). However, if you take a minute to actually visit the organization's website, it's clear that they are promoting choice and advocate for patient's rights. The group does not assist people with suicide. It is their mission to provide information and counseling to people with chronic, incurable diseases or ailments. While they are somewhat unique in that they are willing to counsel people that are not necessarily terminal, all the patients they help have survived a life changing injury, have a degenerative condition (such as ALS or MS) or painful incurable disease. The group does not advocate suicide. They educate people about their rights as a patient, long term planning (like funeral arrangements) and legal documents like advanced directives and living wills. The group also helps patients to fight for their rights and ensures that the patients wishes are carried out.

Critics can say what they like, but there are several key factors they have failed to consider (or ignore) . Number one, be informed before you state your views. If half the people that the reporters interviewed (by pulling commuters over to the side of the road) actually looked into the organizations position, they'd learn that they aren't assisting in suicides. The billboard isn't directed at your average "Emo" teenager or middle-aged person with relationship, self esteem, financial or run of the mill problems. The message is not telling people to go off themselves, because they are depressed. The billboard is meant to get people thinking about patient rights and inform people of the choices we all have, under the law. Secondly, it is very easy for a young, healthy individual to pass judgement on someone who is ill. If you are healthy, you've never experienced what it's like to have chronic pain, lose the ability to care for yourself, be constantly in and out of hospitals, reliant on machines and/or medication to survive. If you're healthy there's no way you can truly understand the stress, anxiety and desperation that can come along with knowing that there is no cure, that you might never get better, or worst, knowing that your condition will only degenerate over time. Unless a person is in this type of situation, he/she should hold their tongue. Lastly, critics should recall that church and state are separate. While many people's religious faith might influence them into thinking euthanasia or suicide is wrong, they should be mindful that their religious beliefs should only determine how they, themselves choose to live their life. It isn't right to impose personal, religious beliefs onto the law. Contrarily, I think people should be aware of the options they have and be conscious of the fact that life can change in an instance; so you're better off being prepared. It is tremendously helpful having the peace of mind, that God forbid you should get sick, or injured, that the people who hold your life in their hands will make decisions based on what YOU want for your life, as opposed to what THEY feel you should do with your life. At the end of the day, you are the only one that has to live in YOUR shoes. I think it's a good thing, to make people consider their choices.

Euthanasia is illegal here in the United States and often a hotly debated topic. I'm sure most adults are familiar with the name Jack Kevorkian, made famous (perhaps infamous, as "Dr. Death") by his stance and facilitation of assisted suicides, for terminally ill patients. He was convicted and spent time in prison for helping over a dozen people end their lives. It was a highly publicized case, here in the states, and even spawned a movie (which I've seen), called "You Don't Know Jack," which starred Al Pachino, John Goodman & Susan Sarandon. It was his story that first introduced me to the concept of euthanasia (I was a senior in high school when he was convicted in 1998 and had heard media coverage throughout the 1990's) and forced me to seriously think about the topic.

Although it is a touchy subject in the US, it is not so controversial worldwide. Many American and Brithish citizens have turned to other, more liberal socities to ease their suffering. Countries like Switzerland, allow medically assisted suicide and therefore get an influx of "suicide tourism" annually. In fact, there is a recent independent film (still listed as "currently in production" by Point Grey Pictures) called "The Suicide Tourist," which documents two cases of individuals that traveled to Switzerland to end their lives. The film is said to follow an American man during his last days and a Vancouver couple, petitioning to die together as a couple. I'm not sure if the wife won the right to join her husband in this particular case, because she was said to be healthy (which, for the record I oppose). However, I know of similar cases, where couples (both ill) have sought, and succeeded in dying together, through assisted suicide. Both cases from the film took place at Digitas clinic in Zurich, where for a fee of about €7,000 you can be injected with a lethal dose of sodium pentobarbitol and die, quickly and peacefully.

Currently, the Swiss government is working on revising their lax laws, regarding euthanasia. As the law stands, it is perfectly legal to die by or assisting in euthanasia, as long as you don't somehow profit from it. Dignitas, of course, is a business (whether they claim to be non-profit or not) and the founder has made millions from helping people end their lives. A recent scandal involving urns that were found at the bottom of a Lake Zurich have put Dignitas under the watch of the government, which is currently investigating the situation. Other countries have also been putting pressure (England especially) on Switzerland to create stricter guidelines that would call for each case to be evaluated by two doctors, and limiting the criteria for acceptance (most likely only for terminally ill patients- prognosis of death in six months or less). The possible reform would also make it much more difficult for foreigners to receive assistance; something Britain is hoping for.

I first heard of Dignitas a couple of years ago. I came across a post on Care Cure forums (spinal cord injury network and online community) about a young rugby player (only a few years younger than I was at the time) who had ended his life through the help of Dignitas. The man had been paralyzed (high level, complete injury) in an accident and after two years of struggling, he had had enough. Shortly after his death, the British government launched an investigation into his parents involvement in his death and were considering to charge them with murder. The charges were ultimately dropped.

I was surprised at the mixed bag of opinions that I read in the forum thread. I couldn't help but empathize with the man and thought very highly of his parents respecting his wishes, enough to be present at his death. Some people in the forums expressed sympathy, while others were downright irate, calling the man a coward. I guess I shouldn't have been shocked at the difference in opinions, it's just that, I felt if anyone could understand the man's pain and suffering, it would be those of us living with paralysis. I understand not wanting to die as a personal choice and that some people's beliefs deem suicide as "wrong" or "sinful." Technically speaking, I often wonder if "giving up" is the same as committing suicide (or assisted suicide). If you choose not to live on machines, medication, feeding tubes or treatments, is that the same as taking an injection of poison? I don't think so. I don't think everyone has the inner strength or motivation enough to find reason or the will to live with a high-level, irreversible spinal cord injury.

I don't like to judge others, because I feel I don't know what the whole picture is, and I don't have to live their lives. I also don't expect anyone to deal with my paralysis. It's my burden alone and the people in my life choose to be there. However, I could never expect anyone to live like this, because quality of life is an individual determination and I don't think it's fair to hold someone else to my personal standards, or ability to cope. There have been many, many days that I wished I could "opt out," so to speak. I don't think that makes me any better or weaker than anyone else, because no one has to live my life, except me. Only I can know the full extent of pain and emotional trauma I've experienced over all the loss and changes to my life. Only I can determine if it's worth my effort to keep moving forward. Today I choose to keep trying, but there might come a day where I just can't deal with it anymore and I wouldn't want people to judge me. I have to fight just to live. It takes a lot of work, money and services to sustain my life and it's not a life I'm happy with. It takes a tremendous amount of inner strength to find reasons and purpose to want to live this way. I would hope the people in my life would respect the fact that I have struggled to live a very difficult life (dependent on others, medication, bowel regimes, losing my career, freedoms & dreams) to the best of my abilities and that if I chose to "give up," it would mean I truly had no will left. I often wonder what critics would say if they could live my life for a week (and not know if they'd ever be cured). I have a feeling most critics would change their tune in a heartbeat.

I've always held the opinion that the individual should have power over his/her own health and well being; death and suffering included. I feel it's very cold and callous to force or expect someone to endure prolonged suffering, especially when medical science can offer no cure or remedy. As a society who loves animals and give our pets rights, we "put down" animals that are suffering, because it's "the humane thing to do." Why then (other than selfishness) are we so inhumane to chronically ill people? Personally, I respect others in the choices they make regarding their bodies and their health. Since my accident and upheaval of my own life, I've been forced to think about my own choices and what I want for myself. Most twenty something year olds don't think about their own deaths and/or take any initiative in creating a will, advanced directives or funerary plans. Luckily, most twenty something year olds are fortunate enough to never need those types of documents or advanced planning.

Looking back, I wish I had taken measures to create legal documents that stated my wishes, in the event of a catastrophic event. Reality is, anything can happen, despite your age. Young people are normally complacent (or ignorant) about documenting their wishes and estate planning, because they feel they have plenty of time and can wait until they are old and grey to start worrying. The truth of the matter is, that you are always at risk of illness and/or injury and once you are legal adult, it becomes very difficult (legally speaking) for other people to settle your affairs or make decisions for you. In the event you can't communicate your wishes, people you may not want making decisions for you can step in and/or make decisions you wouldn't want. It's much better to be prepared, especially if you're out of the house and on your own, because there are many aspects of your life can that become effected by illness or injury. Expressing your thoughts aloud is not enough. It's worth the time and effort (as little as 20 minutes and less then $100- using templates like Legalzoom.com) to put your wishes in writing.

At the time of my accident I was twenty four years old. I was teaching full-time and living in my own apartment. Immediately after my injury I was rushed to the hospital, on the brink of death. I spent three weeks in intensive care, had three surgeries, multiple live threatening fevers and was on and off a ventilator. My family stepped in to make many decisions for me. It was an extremely stressful time for the whole family and created a lot of tension and bad blood between some people. My privacy was completely destroyed, in every sense of the word. My apartment was shut down immediately; all of my belongings rummaged through. My parents tried to handle all my bills & finances and eventually, I had to give them power of attorney. I had no spouse and since I was an adult my parents were legally bound as to what they could and couldn't access. Everything happened so fast and I was in shock for a very long time. At first, I was in denial about the severity of my injuries. As reality started to sink in, it was all so traumatic that I was not in a frame of mind to be handling any responsibilities, other than just fighting to stay alive. Looking back however, I wish many things had been handled differently, and that I could've played a bigger role.

Since then, I've regained all my power to oversee my own affairs and have put plans into place, so that if I should become very I'll, or die, there will be no guessing, no fighting and less stress for everyone. I have a will and advanced directives. The will outlines what I would like to be done with my material assets. I don't have much, but it is very important to me that the people I choose get what I would like them to have. I felt extremely powerless after my accident. I never want to go through that again, nor do I want tension among my loved ones (recall the Terri Schiavo case 2001-2005) or to put my family through the burden of having to make life altering (or ending) decisions.

I know what it is like to be dependent on machines to breath. I never want to experience that again. I've decided (and documented in my advanced directives) that in the event I can no longer breath on my own that I am not to be placed on machines. That means that I would most likely die, but I'm ok with that. Quality of life is more important to me than quantity of life. I see no reason to prolong my own suffering. I find no quality of life in living off of machines (personally speaking). Everyone's threshold for what they can tolerate and what they consider quality of life is different. That's why it's so important to seriously think about what you want for yourself and to document it. In all honesty, if I had a living will at the time of my injury I would not be alive today. I would not of wanted this life for myself. I still do not want this life for myself, but I am stuck with it, and feel I need to make the best of it. I'm already unhappy, but that doesn't mean I'm trying to die, or giving up. I just refuse to suffer through anything worst than my already bad situation. I don't see the sense in living on machines. Been there. Done that. No thank you.

Now that I have my wishes documented, it's extremely important that they're followed through. I have made it clear to my family and care givers that these documents exist. I have a special card with my identification to alert strangers as well. If hospitals don't know, they're going to try to do everything possible to keep you alive. It's important that they know what you want and that plans are already in place. In my advanced directive I've also spelled out what I'd like done with my remains. I'm donating my organs, would like to be cremated, do not want a viewing or funeral and expressly forbid anyone to keep my ashes. It gives me peace of mind to know my wishes will be carried out. Death is not a pleasant topic and sometimes hard to talk about, but it's an inevitable part of life. Every individual has the right to make certain choices about their care, in both life and death. Otherwise, you leave a very heavy burden on your loved ones, who most likely, would not want the enormous responsibility, if they had a choice. It's important that people know their rights and if exercised, that they are respected. I think more people should have an open dialogue with their loved ones and take the time to make their own decisions.

LINKS to related articles (if case you're interested in learning more about some of the things I mentioned):

Canadian couple-http://www.timesonline.co.uk/tol/news/world/europe/article6021947.ece

British couple-http://www.dailymail.co.uk/news/article-1199550/Famous-British-conductor-Sir-Edward-Downes-wife-die-assisted-suicide-clinic-Dignitas-Switzerland.html

Rugby player-http://www.telegraph.co.uk/news/majornews/3689907/Parents-of-rugby-player-in-Dignitas-assisted-suicide-will-not-face-charges.html

Billboard-http://wcbstv.com/local/right.to.die.2.1805186.html

BBC Dignitas coverage- http://www.bbc.co.uk/news/10461894

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Summer Safety

As you may or may not know, the 5th anniversary if my accident was this past June. I was injured in a swimming accident, which left me paralyzed from my chest down. A split second decision to do a shallow dive changed my life forever. It was a stupid mistake (that thousands of people make every summer) that I'm still paying for, five years later.

I no longer have the ability to care for myself. Paralysis has robbed me of my independence, privacy, career, relationships, dreams and so much more. My accident literally flipped my life upside down overnight. Right now there is no cure to paralysis, so I have to face the reality that I might spend the rest of my life in a wheelchair. I might never walk again, feel most of my body or be able to live without relying on others for my daily needs. It's a hard pill to swallow. Although I have hope for a cure, I have to live for today & deal with what I have now. It's important to me that other people understand how awful paralysis is, and why we should fight for a cure. I use my life as an example of how quickly life can change and hope people can learn from my experience.

According to the Christopher & Dana Reeve Foundation, 6,500 teens end up going to the ER every summer, due to diving accidents. That does not include other summer related injuries, like biking, riding motor cycles, surfing or sports; which are all common causes for spinal cord injuries. Given that the annual rate of spinal cord injury (USA) is about 12,000, that means over half of all spinal cord injuries occur during the summer months. The CDRF estimates that there are approximately 200,000 people currently living (in the United States) with paralysis, due to recreational related spinal cord injuries. I'm one of those people.

Please take the time to learn more about paralysis & support research for a cure. There are many causes of paralysis. Unfortunately, many cases are due disease or preexisting medical condition and can not be avoided or prevented. Most spinal cord injuries can be avoided or prevented. Educate yourself and others of the common causes of spinal cord injuries and be mindful of safety measures that you can take to help prevent yourself and/or others from injury. There are some simple tips that you should know and discuss with any children/young adults in your life. The CDRF Paralysis Resource Center has put together a list for summer safety. Please check it out & share the info with friends & family (http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5283099/k.6B65/Summer_Safety_Checklist.htm?msource=email&auid=6574797). It'll only take five minutes and could potentially save you or a loved one from getting injured. It's something I wish I had been more aware of at the time of my accident. It's so common to feel invincible when you're young and think it's important for everyone to be reminded of how easily a careless mistake can result in a serious injury. If I had read this checklist five years ago, it could have made me more cautious and i could have potentially made better decisions. Who knows? The point is, it never hurts to play things safe.

Thanks for reading & enjoy the rest of your summer!

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Waiting for my Wings

I wrote this in my journal the other night & thought I'd share:

A perfect metaphor for my life is the life cycle of a butterfly. Right now I'm in a cocoon. During my old life I was a caterpillar. I went along, thinking my life was good. I inched along, day by day and envisioned my future as a caterpillar. I had everything my little caterpillar's heart desired, until "Wham!" Out of nowhere, I got sucked up into some awful cocoon. Now I'm totally trapped, have no control over how long I'll be this way and my entire life is on hold. There's hope that someday I might turn into a butterfly, but no guarantees. Two possibilities lay before me: I stay in the cocoon the rest of my life, or I get my wings and a second chance at life. The future is uncertain and I have no power to control it. For all I know, a bird could swoop down & eat my cocoon while it just hangs around, defenseless. Or, one day I might wake up and discover I have wings. My wings would give me freedom to fly and life would be good again. The worst part is the waiting; being trapped inside of the cocoon. That's where my life is, right now. I'm just trapped, waiting for my freedom.

Virtual Art

I've always been on the fence in terms of how I feel towards virtual art. On one hand, I don't see it as "Fine Art," and tend to place a higher value on traditional materials: paint, chalk, ink, clay, plaster, pastels, canvas, etc. I think this is because I recognize the skill, work & cost that's involved in traditional art work, and am more familiar working with traditional supplies.. On the other hand, I can't deny that training and skill are just as important in the digital arena. Besides, let's face it, when it comes to discussing art, creativity trumps it all. Creativity aside, the cost of materials, time and labor do factor in, in terms of value. With virtual art, the artist has to invest in the equipment and software necessary to produce work, however those materials do not deplete with use and results can be infinitely copied. With traditional materials, every work of art is guaranteed to be unique.

There's something to be said for the interaction between an artist and his/her tools of trade. It is a totally different experience when you physically interact with tangible materials, versus simulated versions. The results may be similar, but the artist is missing out on the kinesthetic experience, when he/she creates their artwork through virtual means. As an artist, I love the different smells, textures and feel of working with different materials. Each material has a unique feel to it and reacts differently depending on what you mix it with and what techniques you use.

Being a disabled artist, there are so many things that I miss out on, due to my paralysis. The freedom to use a variety of materials is one of the many things I can no longer do. Although I still paint, there are tons of other materials and tools that are not suited well to be used with my mouth. Plus, the sensations of feeling things with your hands is totally different from the sensations you might feel using your foot or mouth. Even switching from one hand to another can be a new experience. If you've ever tried working with your weaker hand, I'm sure you can relate.

I miss being able to feel the tension of the scissors as they press down on the paper, and the sound the paper makes, as you slice through it. I miss the smoothness of gliding markers across paper and the smells of the ink. I miss being able to fold, crinkle, pinch, pull, glue, cut, tear and tape paper. I was never really good with clay, but miss experimenting with it. Clay can be cold and wet or oily and slimy. You can squish clay through your fingers and mold it with your hands. Building a sculpture might mean chipping away at a stone, welding metal together or sawing pieces of wood. Two materials I don't miss are chalk and charcoal. I hate the feeling of chalk: the dustiness of it, the scratchy sound it makes on paper and the dryness in creates in my hands. Some people love using chalk and charcoal, because it's great for drawing and easy to create values, by rubbing or smearing it. All of the common materials for two dimensional artwork can be simulated with computer software. Many art programs can mimic how materials blend and overlap as well. However, with digital art, you lose out on tactile texture. You can print out a picture that looks rough in texture, but it will only have the smooth surface of the paper.

Most traditional art supplies are messy. Materials like chalk, pastels and crayons are meant to be held, and often times have no covering and you must touch them directly with your skin. Such materials are not suited well for using your mouth. There are many supplies that I'd need to greatly modify or cover to use them. Although I could add coverings to make certain materials safe to put in my mouth, it often makes the materials cumbersome and awkward to grip. Wet materials like paint and ink work best for mouth art, because they are designed to be applied with instruments (brushes and pens) and provide the artist with a much safer distance to the material and work surface. The other challenge to mouth art, is that it is not easy to work in color (other than paint) or erase. Constantly having to switch out markers or color pencils is annoying and the inability to flip the pencil over, or needing a separate eraser is frustrating. There are many materials I avoid, because it is not worth the aggravation. For me, the paintbrush is the easiest to control, correct and use color. Using my mouth is also very different from using my hands and while I'm grateful to be able to at least paint, it's an entirely new experience.

I'll admit, virtual art also takes skill and talent. With most professional grade art software, you still need to start out with good drawing skills and knowledge of color. There's tons of high tech software that requires training. Most computer artists and animators have to know how to translate 3D objects onto a flat surface, mimic lighting effects and textures. Artists that make computer animation need strong understanding of traditional drawing skills (pencil and paper), before they pick up a mouse and a keyboard. I realize that most professional digital artists have fine art backgrounds as part of their training. The thing that irks me about digital art, is that there are a lot of cheaper programs out there that let the average person cut, paste and tweak photos or prefab images and then call it art. It's similar to professional photographers using an SLR 35mm manual camera, versus Joe Shmoe with his point and click, fully automatic, digital camera. It just gets on my nerves when untrained people make cookie cutter art and pass it off as original, fine art. It's totally different if you create original digital art, using your own ideas and skills. Unfortunately, the average person doesn't always know what they're looking at or the work (or lack thereof) involved in creating a work of art. That is why I sometimes get annoyed when I see "art" made from prefab clip art or someone just fooling around with filter effects on Photoshop. I feel that some computer programs make it too easy to create "digital art", which detracts from the validity and skill involved in making true, high quality art (digital or traditional).

Despite my misgivings with digital art, I've embraced the future and have begun experimenting with different possibilities. Sharing information on the materials and process I use, with the viewer, is an important part of adding value and validity to my art. I figure, if viewers are informed about the different types of software out there, they can better assess the work for themselves. It's important to me that people know what goes into making each piece and the ideas behind it. As long as I stick to that plan, I feel confident about showing my digital art, alongside my traditional paintings.

Technology has given me back the ability to easily sketch and draw with color. Although I was already familiar with Photoshop and Paint, using the mouse makes it very difficult for me to maintain control or accuracy. The program that works best for me is Sketchbook Pro, which is on my iPad. The iPad is wonderful, because it uses touch and I can draw directly on the screen, as if I were using a paintbrush, or pen. I can easily swap colors, textures (mimicking different materials), erase and store my work. I was pleasantly surprised (and shocked) at how precise you can be on it, using a stylus and at how well it simulates various materials. The other great thing about the iPad is that it's compact and light. There's no mess involved either, so I'm free to draw almost anywhere, including in bed. It has been wonderful being able to draw and sketch again.

So far I've posted a handful of drawings on my Flickr site. I also signed up for "Project Sketchbook", which is through the Arthouse Co-op. I'll be using my iPad to create all the sketches I plan to use in my book. Once the sketchbook is full, it'll get mailed back to the Co-op in Brooklyn. The sketches will ultimately go on tour across the country to several exhibits and finally stored in the Brooklyn Art Library, where people can access the drawings in person or online. I'll be able to keep track of where my book is and who's seen it. It's a great chance to raise awareness for spinal cord injuries and so far it's been fun working on it.

One other digital art venture I recently took part in was an online contest for a game I play, called "Super Poke Pets!" or "SPP" for short. The game is by Slide and available to play on social networking sites, like Facebook and Myspace. In the game you adopt a virtual pet and earn points and virtual coins, by caring for it and by having play dates with your friend's virtual pets. The coins you earn are used to buy items to decorate your pet's habitat. Players can place as many items in their habitats as they like, in an infinite amount of ways. There are millions of people that currently play and they have a rather active online forum, where players can share ideas, trade items and show off their habitats. I fell in love with game for it's cute style and open ended possibilities for creativeness. I enjoy going on the forums and seeing how other people decorate their habitats. The staff chooses a handful of the best habitat entries each week and winners get a special collector's badge and their habitat earns a spot in the game's hall of fame. There are tons and tons of amazing habitats and really creative, innovative ways that players use the in game items to create pictures. I enter my creations from time to time as well.

Back in January, I entered a picture I made, called "Picasso Inspired Habitat," which was inspired by Picasso's painting, " Girl Before a Mirror." In the picture I recreated Picasso's original painting and then added a detail of the girl's face and her reflection on each side. It was really well received and I ended up winning the "Staff Choice Award" badge and it was added to the hall of fame. It was pretty cool getting the recognition and getting to see my habitat pop up on the hall of fame window, every once in a while. They also contacted me about sharing my story with an LA Times reporter. Apparently, they had my habitat hanging in the office and they pitched the idea to the reporter, who was covering something else for Slide. I was happy to talk with them, figuring it'd be more exposure for SCIs on the west coast. We did a phone interview, but the reporter said she couldn't promise that anything would be printed. She was just interested in the story & how I created the picture. So far no word back from them about it.

Then, about a month ago, a staff member from SPP emailed me and I thought it might be regarding the newspaper article. Instead, it was about a new series of items they planned on releasing. They sell gold items, which cost real money and one of the series they do is called the "Masterpiece" series. Each masterpiece is an SPP recreation (which replaces people with SPP pets) of a famous painting and sells for about $50. The masterpieces are rare releases and purchasers get a special badge for buying them. The new series they wrote to me about, is called "Community Classics" and each gold item is a replica of community members' habitats. They are equally as rare as masterpieces, sell for $20 and also grant buyers a badge. To my surprise, they decided to use my Picasso habitat as their first "Community Classic" item! I got a special creator badge, $25 worth of game gold and my own item. It was super exciting getting to see my picture on the Facebook announcement and in the forums. I got to write about the picture (included in the forum post) and it was great exposure for my cause. I've gotten a ton of nice comments and feedback and it's been a good opportunity to promote my website.

Proposed budget cuts could force disabled New Jerseyans into nursing homes.

For those of you that are disabled, living in New Jersey & receive PCA (personal care services), such as home health aides, you should know that Governor Christie's new budget proposes to cut reimbursement by 17%. The program I use for paying my aides, Personal Preference recently sent all participants a letter notifying us about this about this possible change. If it passes it will mean a $2.10 per hour decrease to home health aide salaries. That is outrageous! I'm writing to my legislators online & through snail mail. You can find your legislator's information at www.njleg.state.nj.us. If you or your loved ones may be effected by this proposed cut, I urge you to write as well. Tell legislators your story & how this budget cut could impact you!

Here is my letter, if you wish to use it as an example:

"Dear Legeslator,

Hello. My name is Christina Symanski. I'm a twenty nine year old resident of Freehold, New Jersey. I have lived in New Jersey my entire life, mostly in Union and Middlesex counties. I graduated with from Kean University in 2003, with my B.A. in Fine Art (education certification K-12). After college, I worked as an art teacher in the New Jersey public school system (Lakewood and East Brunswick) for two years. I would still love to be teaching in East Brunswick; unfortunately my career was cut short in 2005 due to an accident. In June of 2005 (two weeks before the school year was over) I broke my neck in a swimming accident and was permanently paralyzed from my chest down.

Paralysis has robbed me of independence, freedom, privacy, modesty, career, relationships and many of my dreams for the future. I went from being a perfectly healthy, able bodied, working member of society, to being completely dependent on others, over night. I no longer have control of any functional movements of my body. I am completely at the mercy of others for all of life's daily needs. Living with paralysis is something you must experience, to fully understand how awful it is and how many small things we take for granted, when we are healthy (a perfect example would be having an itch you cannot scratch). High level spinal cord injuries, like mine, affect every single aspect of life. As of right now, there is no cure, so I am forced to do the best I can, by moving forward with my new life.

Life with paralysis has been a day to day struggle. My days are filled with pills, home health aides, nurses and medical equipment. I rely heavily on others to help me accomplish the simplest of life's tasks, such as dressing, eating, using the restroom and bathing. It has been a difficult and drastic adjustment from being totally independent and on my feet. I often look back and wonder how I've survived thus far.

I think one of the key components to my personal recovery has been the ability to live in my own home. Shortly after my accident and hospitalization, I moved into a nursing facility. At the time, I was newly paralyzed, terrified and did not have the strength or the knowledge to live on my own, and had no other alternative. The year I spent in the nursing home was by far the worst year of my life. Imagine losing the ability to care for yourself, your job, your home, and your freedom over night, while living in a strange environment, with no privacy and nothing to comfort you. Every day I lived in the facility I felt as though I had never left the hospital. It was a little over a year of continuous insomnia, absolutely no privacy (I shared half a room, which was divided by a curtain) and being told how and when I could shower, sleep and eat. I would not send my worst enemy to live in a nursing home. The entire experience drained the little bit of hope and happiness I had left and I knew I would not survive living there. I made it my goal to get out and back into the community. Through hard work, determination and a lot of help from a handful of state employees (Division of Disability, Medicaid, Dept. of Health and Senior Services and HUD), I achieved that goal.

Living in the community, in my own home has made my life so much better. Living in my own apartment has given me back some of the freedoms I'd lost, privacy (as much as possible), and the ability to be as independent as I can. I feel more in control of my own life and have the freedom to manage my care on a one on one basis, and on my terms. I feel like a member of society again. I have a much higher sense of self and morale. I have proven to myself that there can be life after paralysis; not just sitting around passing time, but an actual good quality of living. Since I've been home, I've done my best to contribute and give back to the community. I joined the Association for Mouth Painting Artists, and have had several art exhibits here in New Jersey. My story has been featured in the Star Ledger, Asbury Park Press, and several other publications. I've been on New Jersey channel News12 and on satellite TV. I have made it my mission to use my story to help raise awareness of spinal cord injuries and paralysis.

I know that if I were still living in a nursing facility today, I'd surely be a shell of the person I was (and am). I'm certain I would have lost my will to live, if I were still there. For me, it is quality of life that counts, not quantity. No one should have to have a lower quality life, when improvements are possible and are available. When I was planning to leave the nursing home I was shocked to find all of the wonderful programs and services that are available to people with disabilities, here in New Jersey. I am extremely grateful to the state for providing me with the resources I need to survive. That said, I am extremely worried and upset over the proposed budget cuts to PCA (personal care assistance) services, in Governor Christie's upcoming budget.

I currently receive 56 hours of care per week, with a home health aide and 3hours every other day with a nurse. My aides and my nurses are my lifeline. Without them, I'd have no way to care for myself. When you think about it, eight hours each day is not much, if consider the fact I cannot use my limbs. Yet, with proper management and supplies, I make do. My aides rely on me, just as much as I rely on them. I am their employer and they count on me for a reasonable salary and hours, so that they can support themselves. All of my care falls under a Home and Community Based waiver and I receive both Medicaid and Medicare. I pay my rent and bills with my disability benefits and help through HUD. Everything I need for my personal care (medicine, aides, nursing, supplies, doctors and equipment) is covered by a set budget of $9881 per month, which is provided by the Medicaid waiver and Medicare. On the contrary, when I lived in the facility, the state was spending approximately $500 per day for my care (around$15,000 per month). I'm much happier and healthier in my home, than in a facility and can receive the same amount of care for less cost to the state.

If Governor Christie's budget cut passes, that will mean a 17% decrease in funding to the reimbursement rate for Medicaid home health services. This is not acceptable, nor is it a fiscally sound decision. A decrease in funding would force programs, like Personal Preference, through which I receive my home health aides, to cut my workers’ salaries by $2.10 per hour. My employees cannot afford a cut in their salaries and I do not have any other means to pay them. This proposed budget cut, could make it impossible for people like me to retain home health services. I cannot live on my own without those services. Cutting my employee's salaries could potentially force me (and many other disabled citizens) to move back into a nursing facility. It makes no sense to do this. Those of us living in the community need to be able to pay our aides competitive rates, comparable to nursing facilities, in order to keep the reliable employees that we desperately depend on. Sending people back into facilities would reduce their quality of living and increase the cost to Medicaid. It is a lose-lose proposal.

I'm asking from the bottom of my heart and on the behalf of all the disabled people that cannot express themselves, to please consider eliminating this proposed cut. It will not result in savings. It will force home health workers to take jobs (or become unemployed if they are not certified to work in facilities) in the nursing homes and it will force many of us in the disabled community, to follow their lead. It is a fact that nursing home costs outweigh home health costs. Please review these facts and put yourself in my shoes. I was perfectly healthy five years ago and now I'm not. I put my trust in the government and my elected officials to do what's best, on behalf. Please keep my situation in mind (and the hundreds, if not thousands of other disabled New Jerseyans) and urge Governor Christie to do away with this particular budget cut. Cutting home health services will only cut into my quality of life, it will not decrease the deficit.

Thank you for your time and consideration. I'm trusting you will do what's right.

Sincerely,
Christina Symanski

www.christinasymanski.com"