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.

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. 

Pain in The Butt

I haven't been feeling well for a while now. My tolerance for sitting up in my chair has been decreasing, ever since I had that pressure sore on my thigh a couple of years ago. I used to be able to tolerate sitting eight hours (or more) every day. Now I typically feel wiped out after only four hours. Even though I'm paralyzed, with hardly any sensation, my body compensates by presenting me with certain signals: chills, cold sweat, profuse sweating on only one side of my face, tingling sensations, fever and tightness in my chest. The signals are called autonomic dysreflexia (common for people with high injuries like mine), and are my body's way of alerting me to a problem. The bad thing, is the fact that dysreflexic symptoms are secondary symptoms and I have no real way of knowing what the cause is. I tend to go down a mental checklist and try and rule out common possibilities: blocked catheter, wrinkle in clothing, a pressure area, my feet, bowel issues and my position. It's normally one of the things on the list and once it is resolved, the dysreflexic symptoms go away.


Most of the time, dysreflexia is only a minor discomfort, that I've learned to deal with. However, there are rare occasions when we (my caregiver and I) can't figure out the cause or I know the cause, but don't have help nearby. It is especially frustrating when there is nothing to pin it on and I end up feeling sick for long periods of time. In many cases, I think it is caused by urinary tract infections or indigestion. I try to avoid taking antibiotics at all costs, because they reek havoc with my bowels and sometimes cause nausea.The dangerous and/or scary part aboutdysreflexia is the fact that the majority of the symptoms are caused by my blood pressure rising. Since I can't feel the pain my body feels, it elevates my blood pressure and that's what causes the secondary symptoms. If the problem causing the pain or discomfort isn't found, then my pressure will continuously rise and I risk having a stroke. When it gets very high I feel as though I have a vice grip around my ribs, squeezing me and an immense heaviness where my ribcage meets. If you've ever had pneumonia, you are familiar with the feeling, although in my case it has nothing to do with my lungs. I do run low grade fevers quite often; always starting in the late afternoon, after I've been sitting a while. I can tell as soon as they come on, because I begin to feel very lethargic.Thankfully, I haven't had any high fevers in a long time. The first year after my accident I had a few potentially lethal fevers, that hit 106 degrees Fahrenheit or more.


Normally, I chalk up my crumby feelings to my catheter and try not to let it bother me. Lately though, I've been getting the tightness in my chest too often. It forces me to feel as though I have to lay down, because that's the only thing I've found that helps the symptoms subside at all. The tightness doesn't go away until I've laid down awhile. Aside from the discomfort, it's been really annoying not being able to pinpoint the cause. In a lot of cases, even the doctors have no way of knowing why I experience dysreflexic symptoms and they tend to blame it on one another. My urologist is always blaming my bowels, my physiatrist often thinks it's urological and my general doctor usually has no answer. Honestly, I know my body better than all of them and I often feel like it's a waste of time to be seen by doctors, since it's all a guessing game. I find doctors (at least mine) look for pills to solve everything and are quick to write out prescriptions. Most of my doctors are willing to give me prescriptions for specific things, as long as I ask. I'm sure it's because they know that it's impossible (in most cases) to know for sure what wrong with me and they rely on me to help figure out a diagnosis. During my first year post accident, I was easily taking over 20 pills each day. The bulk of my medicine is bowel and/or bladder related. In fact, I ran into problems a couple years back, because I was constantly taking antibiotics forUTIs (urinary tract infections). The antibiotics in turn, caused issues with my bowels and that's what led to my sore. It is so aggravating when the solution to one problem creates a new problem.


People with quadriplegia require bowel regimes or colostomy bags to go to the bathroom. It's a subject I've rarely discussed with anyone, besides my friends who are also paralyzed. Although, I'm not really comfortable talking about it, I think it's important that people learn all aspects about paralysis. I want people to understand exactly what I go through and why it is so crucial that we find a cure. I share things, at the expense of feeling embarrassed, because I want people to see the whole picture. Going to the bathroom (bowel movement) is my least favorite subject and yet, I find my life revolving around the bathroom, these days. What's worst is that I have had issues with using the restroom my whole life. I don't know why and I'm sure psychologists would give me some complex Freudian theory as an explanation. All I know, is that it is a part of life that I've never felt comfortable about. In a way, I feel like it's the epitome of un-ladylike behavior.


I realize that going to the bathroom is not something one can choose to do or not to do and that everyone does it. I've just always seen it as an embarrassing part of life; one aspect that was acceptable for others, but not myself. I put myself through a lot of physical pain through the years because of my issues (paranoia, disgust, embarrassment) because I absolutely could not bring myself to "go" just anywhere. I'd rather have stomach cramps, than use a public restroom or a friend's bathroom. I used to treat going to the bathroom like some covert operation; the objective being not to leave evidence behind. I know it probably sounds silly to most people, never the less, it's hard to change how you feel towards something, especially when there's not much you can do to change it. I still hate going to the bathroom, more so than ever, because I no longer have any privacy. It's like my worst nightmare, having to have someone else assist me in this area. There's also the constant worry over accidents, since I have no control or sensations whatsoever. Having a bowel regime is supposed to keep your body on a schedule and is designed to prevent accidents, however nothing is full proof. I can't even begin to explain the stress related to never knowing or worrying about the fact that your body can decide to do whatever it wants, without warning. It's always in the back of my mind.


Being paralyzed (especially quadriplegic) often requires having people in your face much more than you might want or like. It's hard to have any true privacy when you need someone helping you with ever single aspect of life. Given the fact that I've always been extremely independent, it can feel suffocating at times to hardly ever have time alone. On top of that, there are so many personal hygiene things that adults normally do for themselves that I need help with. At times it can be very embarrassing or uncomfortable accepting help. There are tons of "simple"ADLs (activities of daily living) that I need help with that the average person might not even think about, because they are second nature: shaving, blowing your nose, going to the bathroom, bathing, trimming finger/toe nails, cleaning your ears, dressing, applying cream/lotion, getting an eye lash out of your eye, scratching an itch, brushing your teeth, brushing/styling your hair, applying make up, using a napkin when you eat, changing pads/diapers/soiled clothing, eating and so on and so forth. Under normal circumstances, I wouldn't have dreamed of asking for help with most of the things I mentioned. Being healthy and able to care for one's self is something most people don't think about and take for granted. I'm also guilty of thinking that way, prior to my accident. It wasn't until after my injury that I realized how lucky I was before and how many little things are effected by paralysis. Paralysis has changed my entire perspective on life.


For me, the bowel regime is the ultimate torture and most embarrassing thing that I need help with. It's been over four years since my accident and it still hasn't gotten any easier to deal with having other people involved in such a private aspect of life. The worst part about it, is the fact that I have absolutely no choice in the matter. If I could have some sort of nutrient injection and just give up food, I would. I realize how crazy it sounds, but it's an example I use, to demonstrate how much it bothers me. Food is one of the few pleasures I have left and I'd still give it up, if it meant never having to go to the bathroom again. Unfortunately, I need to eat to survive and my body needs to get rid of the waste. It just stinks (no pun intended) not being able to control the most basic functions. Being a woman adds even more things to the list of things I can no longer control or be able to care for myself. I can't help but think about how unfair it all seems. I sometimes ask God why he/she couldn't give me a little bit of a break. Is it too much to ask to not have a menstrual cycle? I lost it for six months post accident and wish it wouldn't have come back. I mean, so many other functions were lost, why not that one too? It's not like I'm going to be having children anytime soon. Having to have other people help during that time each month ranks second in terms of embarrassment.Is it too much to ask to not have to constantly worry about incontinence? The whole point of a bowel regime is to prevent accidents and yet they still occur from time to time. It's hard to explain how awful I feel, when accidents occur. Most of my aides, nurses and family try to down play it, like it's no big deal, but I have a feeling they'd think differently if it was them.




The entire subject of incontinence upsets me. It is not easy to cope with the knowledge that I have no control over my own body, or that I have to endure a bowel program for as long as I am paralyzed. I won't even consider the idea of having a colostomy bag. It is not an option. I already know that having a colostomy bag would bother me even more than having to go through a bowl program. The thought of having a bag filled with feces strapped to me, makes me sick to my stomach. As it stands, a nurse comes every other day for three hours and I have to take six pills a day, to keep my body functions working on a routine. Although it can be tedious, I feel as though I'm left with no choice, but to grin and bear the situation the way it is. Having a bowel program (I'll try and spare you from as much detail as possible) consists of having another person manually stimulate your body into going to the bathroom. Someone like me (quadriplegic) no longer feels the sensation of needing to go to the bathroom, nor the feeling of going, nor the ability to control the required muscles. The person assisting with the bowel program is in essence, giving your system a jump start to signal it into doing what it needs to do. It is also the assistant's (usually a nurse) job to make sure that the bowel regime was a success, by manually checking to ensure that your body has no more waste it needs to get rid of. If it's done on a set schedule and you take your medication and watch your diet, it's supposed to be pretty consistent and give you the peace of mind that you can go through your day without having to worry. When things are going well (usually only ever lasts a couple of months at best), I do a decent job of coping and try to block out the situation as best I can.




It's frustrating and depressing when I do everything I'm supposed to do and problems arise regardless. It makes me want to scream. Why I am going through all this, if I'm still having to worry or feel on edge?! Not to mention, there are secondary issues that come along with the fear of incontinence that are not only embarrassing, but also unhealthy. As I mentioned early, if incontinence happens too frequently, the person risks having skin breakdown and sores. My latest discovery, is that people with spinal cord injuries are also prone to getting hemorrhoids. Oh joy! Yet another embarrassing thing I can add to my list of things I wish I didn't need help with. I never realized how common hemorrhoids actually are. Apparently, most women get them after childbirth. At this stage in my life I would probably be dealing with them anyway (from having a child), even if I never got injured. The difference now, is that there is no way of getting relief, other than topical treatments, like creams. So although hemorrhoids may be a common problem, it becomes a much more complicated issue for people with paralysis. Unlike the average person, I don't have the luxury of being able to stand or tolerate long periods of time laying on my side. On top of that, the very thing I hate the most (bowel program) is one of the main causes and primary irritant to hemorrhoids. I feel like I can't win.


Some people are better than others at dealing with needing to have help with hygiene and toileting issues. I suppose it all depends on individual personalities and how the person dealt with that aspect of life, prior to their injury. I've always had bathroom hang-ups and being paralyzed just magnifies those feelings ten fold. In general, I find that men are much more laid back about topic. Statistically speaking, there is a greater percentage of men, versus women with spinal cord injuries and the vast majority of my paralyzed friends are men. By comparison, men also seem to enjoy toilet humor and talk more openly about the subject, whether injured or not. Women with spinal cord injuries have additional issues that can add to the stress and depression, often related to paralysis. Men don't have the potential to bear children or the burdens of menstruation. It's heartbreaking to know that I might never experience pregnancy (Technically I can carry a child, but I'd have no sensation and it would be high risk. Not to mention, I'd have no ability to physically care for a baby), breastfeeding or holding my own child. These are things I've dreamed of and imagined, since I was a young girl. Men with spinal cord injuries don't have to deal with all the extra problems that women face. I'm not saying men have it easy. No one living with paralysis has it easy. I'm merely demonstrating the obstacles I face as a paralyzed woman and my difficulties dealing with the care I need.


Not all people with paralysis will agree with me, in terms of how they feel about the care they need. Like I said, each case is unique: every injury, every body, coping skills, treatments and attitude. Despite how poorly or well a person deals with living with paralysis, I'm certain that 100% of the people in the spinal cord injury would give anything to have their health back. I doubt anyone would choose help over the ability to care for one's self independently. I think it is absolutely vital that people understand paralysis, especially given the fact that a spinal cord injury could happen to anyone, at any age. 


The things I dream about now, are the most basic abilities that most people never even think about. So many people are wrapped up in trivial problems and materialistic attachments . I think it's important to help others understand how lucky they really are and to help them re-focus their priorities. As embarrassing and disturbing my conversations, blogs or interviews are at times, it is all worth it, if it opens the average person's eyes to what it mean to be paralyzed. When I think about the out pouring of generosity Americans have shown towards issues of human suffering (like Haiti, New Orleans,Darfur , etc.), I know that people will support a cure. I think two of the key factors to curing paralysis are awareness & funding. That is why I feel it is important to be open and honest. It's not about pity. It's about raising public awareness. People need to know the true, everyday obstacles that paralysis poses, so that they we be motivated to find a cure. Sugar coating my life by talking about all the things I can still do will not help bring a cure. Yes, life isn't over after paralysis, but why should I have to settle for compromise for the rest of my life? My injury has taught me to value the core things in life: love, family/friends & health. If I could regain the ability to care for myself, I'd be a happy person the rest of my life.




To learn more about Autonomic Dysreflexia, check out this link: Autonomic Dysreflexia