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

Art Education: Bringing Light to Contemporary Issues

Although it's been four years since my accident I still think about my "old" life on a daily basis. I can't speak for other people in my situation, but personally I find it impossible to not be reminded of everything I had and lost. One of the aspects of my old life that I miss the most is my career. It saddens me to think about all the years I spent in collage and all the time and effort I put into my work. I was truly blessed to know what I wanted early on in life and to have the motivation and talent to achieve my goals. So many of my friends floundered through college and/or chose career paths that they are unhappy with. I genuinely loved my college experience and my career. Not many people can say they enjoy their job. I have pictured myself as an art teacher ever since I was in junior high and although I always believed I'd create art on the side, I never envisioned myself as a "starving artist." I chose teaching because I wanted the stability of a steady job and for my love of children. Being an art teacher was the perfect profession for me, because I got to create art every day and inspire children to love art just as much as I do. It was also greatly satisfying to see the children creating and to see their finished artwork. Children's art is special because it captures the world from their perspective. I couldn't help but feel happy and re-energized when I would see all my students' work. Displaying the finished projects was one of my favorite things to do, because I was so proud of the work and wanted everyone to see how wonderful it was. Hanging displays also gave me the opportunity to teach the concepts or history behind each lesson to the larger school community.

It was (and still is) important to me to teach children to appreciate art and understand the vital role art plays in our every day lives. All of my lessons included historical examples of art work and highlighted the reasons behind each piece of artwork or specific techniques. This way, my students could learn about practical uses for art as well as understand how art impacts humanity and how all cultures use art as a form of expression.

I suppose there is a certain irony to my life, in the sense of how my career path changed. Most art majors in college would probably say their dream is to be a successful artist in terms of exhibiting and selling their work. In fact, it irks me that a lot of people use teaching as a "fall back" career option. My dream has always been focused on the teaching aspect of art education and never so much on my own artistic fame or success. That is why I say it is ironic that I find myself outside of the classroom and "working" as an artist.

Once I began painting again, after my accident I focused primarily on skill and technique. I joined the AMFPA and the paintings I give to them I create with the intention of them being able to reproduce them and raise money for the organization. I paint mostly still-lives for the AMFPA and working on them is great practice and skill building for me.

As many of you already know, my personal artwork focuses on my feelings and struggles with paralysis. I choose not to sell my work at this time and rather use it as a teaching tool. Although I am no longer in my classroom, it is my hope that I can educate others through my art. The paintings I've had in exhibits all touch on different issues that impact my life. Some of my work is highly person and depicts specific challenges I face or events that were traumatic. Creating each painting helps me to flush out certain emotions and thoughts I've kept bottled up. In this sense I'm sharing a small part of my burdens with the viewer. It is my hope that when people see my work they walk away with a new perspective on paralysis and desire to help raise awareness. Anyone is subject to injury and I think it's crucial that people understand that they could very easily end up in my shoes. Empathy is more important to me than sympathy. I want people to have a greater appreciation for what they have and to think about how they might feel in my situation. Many of the struggles I face are general issues that all people with disabilities can relate to. I also think it's important to shed light on the big picture and to highlight current events that impact my life, both directly and indirectly.

So, I guess you could say I am still teaching, just in a different way. I'd prefer to still be in my classroom, but am grateful that I still have an avenue for inspiring others to love art and to use art as teaching tool. I've been fortunate that people have taken an interest in my work and have supported me in my goals. I'd like to exhibit more in the future and will continue to grab opportunities to raise awareness whenever I can. For me, fame is not a concern. If I can help educate others about paralysis and in turn help find a cure, that's all that matters to me.

Stressed Out!

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

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

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

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

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

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

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

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

Report about spinal cord injuries in Haiti

I just read this report by ABC http://abcnews.go.com/Health/Wellness/haiti-spine-specific-medical-aid-doctors/story?id=9554088&page=1 (the Christopher & Dana Reeve foundation just posted it on their Facebook).The report addresses the issue of spinal cord injuries due to the earthquake in Haiti. I'm sure the number of spinal cord injuries is staggering, considering the magnitude of devastation. I'm really pleased to see that there are initiatives under way to try and provide care to all of the survivors. I only wish (as does everyone, I'm sure) there were a way to get the medical care to survivors faster.I've been thinking about this specific problem ever since the earthquake occurred and wish I could do more.

Given my own injury (C4 complete) I understand all to well how much care these people need and how critical those first few days/hours are, after sustaining a spinal cord injury. I can only begin to imagine the pain and suffering the Haitian people are going through. It is understandable that the people with spinal cord injuries are being injured further in the desperation to save their lives. I'm sure the average person helping to rescue or free people from the rubble has no way of knowing how severely someone might be wounded. Even if it's clear that someone has been paralyzed, there is such limited access to equipment that I'm sure the priority is just getting the person in to see a doctor with what ever means they have to bring them there. Quick access to medical care is crucial with any severe injury and it's almost unbelievable that people are surviving days trapped beneath the wreckage. It is a race against the clock for the rescuers and survivors. The survivors need medical care as quickly as possible and the rescuers have to move as fast as they can for their own safety as well. It must be terrifying having to worry about tremors which could possibly kill the people still waiting to be saved and/or injure the rescuers as well.

I was pulled out of the pool (which probably did more damage) seconds after I broke my neck. My rescuers thought I was drowning (which I was) and had no way of knowing I had broken my neck until I was out of the water. I was taken away by ambulance quickly and had the best available treatments, in a clean, modern intensive care unit and yet I still almost died. Four years later, I still require special equipment and aide on a daily basis. I rely on government programs for medical supplies, medicine, medical care and day to day help. Its heartbreaking to know that the people in Haiti have no support systems or programs to fall back on. I'm so glad that there are groups out there that can hopefully coordinate their efforts to help give those people with spinal cord injures the care they need. Until a cure is found, paralysis is a lifelong condition and the survivors will need a tremendous amount more help than able bodied survivors. It will be a miracle if many people manage to pull through "recovery" and be stable enough to continue on with their lives. This earthquake has already robbed too many people of their homes, possessions, loved ones and health. Although we can never get back all the lives lost, I hope we can help give Haiti an even better system & infrastructure than they had before the earthquake.For those living with paralysis, they will need more than just the short term rescue efforts. They will need a system stable enough to provide help long after the cities are rebuilt. I hope that there will be a future filled with the care and support services for the Haitian people. I'm sure the country can rebound and advance if its people are given a fighting chance.

My heart goes out to all the people suffering in Haiti and to all the people that are helping the recovery efforts. 

2009: A Year in Review

2009 was a very busy year for me!

I had my work exhibited in two galleries. The first exhibit was held at the Arts Unbound gallery, from July to September. During that time, I also participated in a filming of an episode of the show Soul Survivors. The show is about people that have had traumatic, life changing experiences and how they have overcome them. The show is produced by Ebru TV. Ebru TV is currently available through the cable provider RCN (unfortunately this provider is not in New Jersey), online on the Ebru TV official website and via satellite (not Direct TV, an actual satellite dish that uses specific coordinates). Apparently, EbruTV producers discovered my story through my involvement with the Association for Mouth and Foot Painting Artists and contacted me through them.The episode is about my accident and the impact it's had on my life; as well as how I use art to cope with my situation and help others by raising awareness. We filmed the episode on two separate occasions, which included a sit down interview and painting demonstration at my apartment and at the reception for the Arts Unbound exhibit. The episode has already aired on cable (RCN), and is now available to download and watch online. I'm waiting for permission to include the video on my site as well. Despite my ability to find a million flaws in myself; I'm very pleased at the final result. I'm hoping to share it with as many people as I possibly can! I think they did a wonderful job in putting my story together (there are just two mistakes on the captions, which include: the date of my accident and the fact that I was familiar with pool). I'm hoping to use the video as a teaching tool, in my efforts to raise awareness.

This past September to October I had a solo exhibit at Kean University (my alma mater). The exhibit featured about 15 of my paintings and was held in the student gallery. The exhibit was a big hit! I was so pleased at the turn out for the opening reception and am continually greatful to my friends (mostly ex-professors of mine) in the Kean community for their support. I got to know a lot of faculty and staff when I was an undergraduate student and have remained in touch with many of them. As an added bonus, all incoming freshman received flyers about the show and information about spinal cord injuries. I worked as a freshman advisor for three years during my years at Kean and was thrilled at the opportunity to reach out to so many people, especially college freshman who are in the most common age bracket for spinal cord injuries. News 12 (NJ cable news station) also filmed the exhibit. I'm working with John Bathke, who is a reporter for News 12 and host of his own show, called On the Scene. The show focuses on local artists, actors and musicians. I was filmed at the gallery and here in my home, similarly to Soul Survivors. I'm still working on the painting for that show and look forward to seeing it once it's all put together. I will of course, let everyone know when it is due to air and I'm waiting to hear if it can be included on my website.

As for 2010, I will be participating in another Ebru TV show called Blank Canvas and continuing to paint. I'm hoping to exhibit more in the future and work on maintaining and improving my website. In the end, all my efforts are to help raise awareness and support for a cure to paralysis. I'm praying 2010 will bring about exciting breakthroughs and new treatments, ideally a cure.

Futuristic Science Fiction, Highly Avanced Mecha Exoskeletons & Wheelchairs?

I'm not sure if it irks anyone else, but I'm getting pretty annoyed with all these "futuristic"science fiction TV & movie plots that have characters still rolling around in wheelchairs.

Those of you that know me personally, know that I'm a huge geek when it comes to video games and anime. I pride myself in my anime collection, which includes DVDs from almost every genre out there. I have a really wide range in taste when it comes to movies and TV in general. I enjoy plots that can make me cry and/or laugh and I can't stand predictability. Above all, I like movies and TV shows that make sense. Let me pause here and clarify. If I'm watching a movie deemed "comedy" I expect to laugh and assume there might be over the top outrageous antics. If I'm watching a fantasy (like Harry Potter) it's ok if the characters use magic or have fantastical creatures.If I'm watching science fiction, I do want some of the plot to be based on actual science. Although "science" fiction is "fiction" it should still incorporate logic and science based on what we know. Don't get me wrong, I love fantasy and imaginative things like alien worlds, futuristic technology and space travel. Fantasy is great, but only to a point if the writer wants to convince me that the story has any substance or connection to science. If the story is seemingly all over the place and basic things don't make sense they should label it as fantasy. I'm not talking about complex principles (I'm no scientist). I don't sit in front of the TV picking apart every detail, or double checking equations and physics. I just can't stand it when something in the storyline stands out due to lack of common sense.

I own (and have watched) quite a few "mecha" genre animes and movies. The underlying plot is basically always the same; futuristic society (20xx), huge robotic exoskeletons used in combat, outer space and/or post apocalyptic Earth. The new movie Avatar fits the bill for most of the factors I just mentioned. I had heard the movie hype and seen ads on Nickelodeon for the cartoon series, but knew nothing about the storyline. It wasn't until the other day that I saw an actual trailer for movie. It seemed really cool at first, but then...BAM! The glaring paradox that's been plaguing me for some time now in other shows as well; the main character is in a wheelchair. It's like for a split second the gears in my brain screech to a halt. "Say what?!" So let me get this straight, it's an extremely advanced future Earth society that has technology like bio tech exoskeletons, can travel through galaxies (mind you that would mean we somehow figured out how to travel faster than the speed of light; something Einstein's theories can't even explain), have advanced bases/colonies outside of our planet and in many cases sophisticated androids, but somehow fixing paralysis slipped through the cracks?!

I haven't seen Avatar (I hear it's great), so I can't comment much about the storyline, except for the fact that it takes place in the 22nd century (2154 I believe)and the main character is a supposed ex-Marine who was paralyzed from the waist down in combat. I guess that means James Cameron doesn't foresee a cure to paralysis for at least a couple hundred more years. Unfortunately, he's not alone. There are a slew of anime that follow this formula too (Aquarion, Code Geass, Tekkaman Blade, Gundam Wing, Dominion Tank Police & Basquash!) and it makes me wonder why. How does no one else notice this huge contradiction? Do people really not care if a movie makes no sense or hasn't a shred of plausibility? Why is it that these writers choose to make characters in futuristic stories disabled?

I'm probably more acutely aware of this flaw because of my own disability, but the fact still remains that this phenomenon exists; even if no one else seems to notice. I can't help but think that writers choose to make these characters disabled to make them more sympathetic to the audience. Everyone loves the underdog right? The anime series Code Geass and Aqaurion even take it a step further by having blind paraplegic characters. Geez! Mind you, these characters exist in supposedly highly technologically advanced societies. Part of me can't help but be cynical and laugh.

I've put quite a bit of thought into it and maybe these writers do have some validity in creating this type of future. A future where technology in warfare and exploration has advanced past what we now deem as impossible, but medical and health issues have yet to be resolved. When I think about the billions that our government gives NASA to blow on frivolous projects, that type of future scenario does start to take root in logic. Don't get me wrong. I value technology and know that there are tons of helpful, practical applications created by NASA. I'm not knocking space exploration in general. I appreciate the value in the projects that orbit our planet (such as, satellites and telescopes), because we rely on these technologies every day and they help humanity directly. However, there are many other current initiatives the NASA has planned that make no sense to me, in terms of funding and time spent.
One example is the "Europa Jupiter System Mission," scheduled to launch somewhere between the years 2015-2025. The objective it to drill through the moon's thick icy surface with the hope of finding liquid water and in turn, possibly life (amoeba type lifeforms). How is it justifiable to sink billions & billions of dollars into searching for space microbes when we have millions of people suffering due to disease and disability this very moment? Are our priorities so out of whack that we'll be able to travel to distant planets before we figure out all there is to know here on Earth? It's a very scary thought.

I often feel like I'm one of the few people that pays attention to the world around me and considers what implications our decisions will make on the future. Our leaders (the whole system in general; mayors-president) say they have the future in mind, but seldom back their words up with action. Global warming is a prime example of our society's apathy towards the future. So many people only understand or care about their immediate comfort and I think that's really sad.

I can't speak for the writers of the stories that I mention earlier, but I am very curious as to why they envision a future swarming with technology beyond our dreams and people still in wheelchairs. I would like to think they are trying to prove some profound point, but I am banking on the theory they just see handicapped characters as more likable and sympathetic. I wonder if it ever crosses their minds how absurd (or how negative)it seems to portray humanity's future still riddled with disease and paralysis. I'm not saying our future should be envisioned as a Utopia, but you'd think we'd at least have cured cancer and AIDS and be able to repair the central nervous system after some two hundred or more years of research.
Maybe I just over analyze things too much. I'm curios to hear other people's opinions and theories.


FYI-I'm also a stickler for movies following the original plot of the book, but that's a topic for another blog!

Holiday Stress & Last Minute Gift Ideas

I’m feeling a bit stressed out, which is pretty normal for me during the holiday season. The holidays bring about so many mixed emotions. This has been a stressful time of the year for me my whole life. Growing up with two sets of parents (both divorced and remarried) can get overwhelming at times. You can’t be at two places at once, so you end up celebrating the same holiday multiple times. The celebrating, food and spending time with the family is always great; it’s the traveling & running around that is exhausting. Just getting to see the whole family can be challenging (for big or divorced families), not to mention attending holiday parties with friends and coworkers or spending time with your significant other’s family. Although I still do enjoy the winter holidays, some years I’ve felt like I needed to take a vacation to recoup from my winter holiday (be it school, college or working as a teacher).
The gift giving factor is what really makes the winter holidays (Hanukkah, Christmas, Kwanza, etc) more stressful. I’m the type of person that loves to shop and when I was still on my feet I’d stay at the mall for hours and get all my Christmas shopping done in one day. I find shopping in the mall less enjoyable since my accident, because it’s much harder to maneuver a wheelchair through big crowds. You would think a wheelchair would make it easier to be noticed and that people would take extra consideration in letting you get through the congestion of shoppers, but I find that most people walk around in a daze or are too focused on themselves to pay attention. Not to mention, people have a tons of bags, boxes and other obstacles to get tangled in. The stores themselves are not really laid out with wheelchair access in mind either and it can be difficult to impossible to pass through narrow rows of merchandise. There are even some stores I don’t even try to enter (like Claire’s) because they are so tiny to begin with and I usually can’t see half the merchandise over people’s heads.
It can get quite expensive when you have to buy for double the amount of people (two sets of parents, four sets of grandparents, siblings, etc). I don’t mind spending money on my loved ones (if I have it). In fact, I rather enjoy gift giving. It’s the process of finding and choosing the right gift for each person that can be a hassle. Having picky or difficult people to buy for can make staying on a budget challenging if their list of wants is small. I’m pretty fortunate in that most people I know are easy to buy for, because they have hobbies or specific interests. Luckily nowadays almost all stores offer online shopping as an alternative. Most websites even let you create wish lists, which is very helpful! Wish lists provide the buyer a range of things to choose from and the receiver still has some element of surprise when they are opening the gift. Wish lists are great because they remove the stress of figuring out things like sizes and colors. These days I do almost all my shopping online instead of going to the mall and wished all my friends & family would send me wish lists.
I tend to wait last minute to shop for other people, because it kills me to wait to give the gifts. If I shopped for Christmas in October, I’d end up buying double; having already given the first set of gifts away. When I was on my feet I could wait until December 22nd and still get everything accomplished. Online shopping requires more time and planning, because you have to consider the time it will take the items to be delivered to you. Naturally, most sites offer fast shipping alternatives, but be ready to pay an arm and a leg for it. I don’t think it’s worth buying something online if I have to pay half or more than the cost of the item itself in shipping fees. Convenience is nice, but it’s absurd to pay double the price of something I could buy around the corner. This year I’m stuck going to the stores, because I’ve procrastinated too long and have yet to buy a single gift for any of the adults in my life (shopping for kids is fun). I’d much prefer doing everything online, but that’s what I get for continuously putting it off.
If you still haven’t tried online shopping, I recommend you do. The important thing to keep in mind when you shop online is keeping your credit card information secure. Only shop on big name websites that represent well known retailers such as: Best Buy, Target, Amazon and ToysRUs. You might find seemingly great deals on smaller websites, but you are taking a big risk trusting “mom & pop” shops with your info. A smart thing to do is set up a PayPal account. PayPal is a service that acts as an intermediary between your bank and the retailer. They keep your info secure and a lot of retailers let you pay using PayPal (even smaller businesses). Try to minimize the number of websites that don’t accept PayPal; the fewer sites that have your info, the better. Most websites let you create an account, which can save your shipping and billing addresses along with your credit card info. I normally create accounts for the convenience of saving addresses and the ability to track my orders. However, I do not recommend saving your credit card information on multiple sites. Most online stores have multiple payment options and you can tailor your account to only save certain information. You can easily keep track of what you buy by having the order confirmations emailed to you or you can print out a paper copy. Online shopping is also a fast and easy way to compare store prices and read reviews on products.
If you are like me and are still looking for ideas and/or still have shopping left to do, I have a few suggestions that might help you out. As I said before, I know how hard it can be to choose the right gift for the right person. It might seem even more difficult when shopping for the people in your life with disabilities. The first obstacle can be the high price of anything labeled for use with people with disabilities. In my experience, I’ve found the equipment and supplies I use are almost always marked higher if they come from a store that is geared to sell to the disabled and/or medical community. It’s a sad fact. In many cases high prices are caused by the need for customized products and/or because manufacturers aren’t producing modalities and equipment on a large scale. That said, there are some really great gifts out there and many of them don’t require specialty shops. Some gift ideas just require a little ingenuity and creative thinking.
Although I chose these gift ideas with the disabled community in mind (spinal cord injuries and paralysis in particular), they are applicable to everyone. Here are a few of my suggestions for this holiday season:
1. I think we all too often forget that during the holidays our focus is supposed to be on the spirit of giving, spending time with loved ones and in many cases, religious traditions. Somehow those aspects of the holidays often get lost in the hustle and bustle of our commercialized society. That said, I think the very best gift you can give is a donation to a charity in the name or in honor of the person you’re buying for. For someone such as myself (with a chronic disease or permanent disability), I can’t think of a better gift. Giving to charities that support causes that the receiver deems important is like giving a double gift. You’re giving the hope to the person you gift and you give support to the cause itself. Most “causes” have official groups or organizations that raise funds for research for cures, awareness and/support. I suggest giving to well known organizations, such as The Christopher & Dana Reeve Foundation. There are even some websites that allow you to prioritize causes that are important to you and provide links to reputable charities; that way gift givers know exactly what causes/issues matter to you. www.giftback.com , www.justgive.org and www.heifer.org are three great examples of charitable donation gifting sites.
2. One of the hot items this year is e-readers. If you’re not familiar with the term, an e-reader or e-book is an electronical device that lets you store hundreds (even thousands) of books, magazines, journals and newspapers into a very convenient and small amount of space. The e-readers that are for sale all range a bit in size from about six to nine inches in height, five to seven inches wide and under an inch thick. They are incredibly light; usually weighing less than an average hardcover book. The big three right now are: Amazon’s Kindle, Barnes & Noble’s Nook and the Sony Reader. All three e-readers are fairly easy to use and can even be controlled using a mouth stick. All three e-readers allow you to purchase & download books using Wi-Fi, but you need to check coverage areas of each company before you buy. All of the readers use e-ink technology, which mimics the look of paper and doesn’t have glare issues like you’d have reading from a PC. You can even jot down annotations & highlight words in e-books and they all include built in dictionaries. While they all do relatively the same stuff, there are a few key differences you should consider.
• The Kindle has been around the longest and it currently comes in two models. The KindleDX is larger than most e-books at 9 inches, but it is still incredibly light & thin. Kindle DX gives you the option to read horizontally or vertically. Its unique selling point is its text to speech figure that can “read” text aloud. Unfortunately, the TTS (text to speech) feature is not compatible with all books. Some authors complained that it was discouraging consumers from buying audio books. I disagree. There is no comparison to a human reader versus a computer reader. TTS is nice for someone such as myself, because I can listen to books in bed without setting up all the equipment I need to read a traditional book. TTS doesn’t provide the tone or inflection a human reader could, nor does it understand the context of the words it reads. I view TTS as a convenient alternative to reading (especially for someone without hand function).Audio books are available as well if you get tired of listening to everything in a monotone, robotic voice. Kindles are only available through Amazon’s website, so your only way to test one out is to order one. You also need to buy all of your books and periodicals through Amazon. The nice thing is that the Kindle is ready to use straight out of the box. You don’t need a PC to access the web or use to the Kindle. There is a basic web browser included. It also includes 3G global coverage. There are no fees or contracts and Amazon will back up your books on their site. A couple of other selling points include: a built in PDF readers (or converter depending on which model), personal document service, Wikipedia, button controls for both left and right handed people and compatible applications for the iPhone and Blackberry.
• The Sony Reader comes in three models. The Pocket Edition , Touch Edition & Daily Edition, which is a bit larger than the first two. The Daily Edition is the closest in comparison to Kindle DX. It can be read horizontal or vertically and has 3G wireless capabilities. The unique selling point against the Kindle was its touch screen controls. However, the Nook also has touch controls and can compete directly against Sony Reader. There aren’t many unique things about the Sony Reader, but unlike the Kindle, you can see them in person and try them out in various stores. The other nice thing about the Sony Readers is the wide range of sites from which you can purchase books. You can find many books for cheaper prices or even for free. Sony gives you more buying options, whereas its two competitors make you buy books through them.
• The Barnes & Noble Nook was only just released (December, 2009), so there are still a few kinks that might need to be fixed and not many people have one yet. The Nook is available to try in person and the Wi-Fi service is free for all Nook owners, within B&N stores. That said, the Nook has a few unique features that make it stand out. There are two touch screens on the Nook; the upper area is for reading text and uses e-ink technology, while the bottom features a LCD scroll bar with color pictures of book covers (similar to iPods that can display album covers). The second feature exclusive to the Nook is the ability to share books with other Nook users. The LendMe feature is a nice option that many book lovers will enjoy because it allows them to share favorite e-books just the same as they would a paper copy.
My descriptions are good to get you started, but they are just short overviews. I suggest you visit each website and do a bit of comparison shopping yourself (www.amazon.com , www.sonystyle.com & www.barnesandnoble.com/nook ). Try reading reviews from nonbiased websites (www.cnet.com or www.pcmag.com are good) as well, not just the manufacturer’s websites. I’m leaning towards the Kindle for myself. I really like the TTS feature. The touch screen navigation is the only thing the Kindle e-books are lacking and I’m sure whenever Amazon decides to release a newer model it will include a touch screen as well. They are all a bit pricey (around $300), so you’ll want to weigh all the options. I’m an avid reader and although I love my books, they take up a ton of space. I think it’s pretty amazing to able to have a virtual library of books that can travel with you wherever you go! As a bonus, e-books are “green” in that they save paper and space. I think e-books are great gifts for anyone.
3. Getting dressed can be stressful for me, as I need help and have safety issues to consider. I tend to wear easy stuff like sweats and t-shirts if I’m just going to be in my apartment. I’d compare my style now (at home) to how I used to dress if I was going to the gym. I try to make life a little easier for my aides by only wearing my “normal” clothes when I have guests or go out. Much of my clothes from before my accident (pants especially) are no longer appropriate for me and I’ve given bags & bags full to charity. Being paralyzed and confined to a chair, I have to consider ways that clothes might damage my skin or create problems that I can’t feel. Poor circulation can create swelling, so tight or form fitting clothes can create pressure sores and/or constrict my catheter. I stay away from clothes with buttons, rhinestones, zippers or beading on the back, because leaning up against those things can break down skin quickly and create sores.
I can’t raise my arms over my head, which poses a problem for getting on certain shirts and jackets. Although the clothes technically fit me, most are not designed with disabilities in mind (it’s assumed that adults put their own clothes on).That doesn’t mean I have to wear hospital gowns or pajamas all the time. I can still wear trendy clothes as long as I keep those issues in mind and buy a bigger size if I’m unsure. If you are buying clothes for someone in a wheelchair you should keep the issues I’ve mentioned in mind. You might also want to check out specialty shops that sell clothes designed exclusively for people who use wheelchairs. I haven’t come across many that sell trendy or youthful styles (most are designed for the elderly), but you can find basics. www.professionalfit.com is one of the better sites I found.
4. My last gift idea is for the gamers in your life. Just because someone has a disability doesn’t necessarily mean they can’t enjoy the computer or video games. I was big into gaming before my accident and was really bummed out that I wouldn’t be able to play games again; after my accident, since I have no control below my chest. I only have use of my neck, shoulders and biceps. However, I’ve learned and/or invented ways that allow me still play games using a mouth stick. Luckily, there are tons of gaming options out there and hands are not necessarily required! Nintendo has developed some pretty innovative games/gaming systems that don’t rely solely on mashing buttons. Depending on the person’s needs and abilities, Nintendo Wii can be adapted to use with your arms, head or sip and puff. There are even sites that customize controllers to make it easier for people with limited hand function (www.gimpgear.us & www.quadcontrol.com). Nintendo DS is a portable system that has dozens of touch based games. You can figure out the game controls by reading reviews online (www.ign.com). Sometimes the back of the game box or online store description give enough information to determine if it’s touch based. I own over 30 Nintendo DS games that I’ve been able to play (and beat in many cases) by using a mouth stick. Ordinarily, a person with normal hand function would use the stylus stick that comes with the DS, but it’s a bit too thin and way too short to use by mouth. I adapted a mouth stick by adding a knitting needle inside of it, so that it has a pointy tip like a stylus, but is long enough to use. Using a mouth stick also gives me better control since it is thicker than a regular stylus and less flimsy.
As for the computer, there are hundreds of games that only require a mouse to play. I have a trackball mouse, which allows me to move just the ball and not the entire mouse itself (I use Kensington’s Orbit Optical Trackball, which only costs about $30). You can purchase games online or buy the software in stores. Most games in the following genres can be played by mouth stick: match 3 (such as Bejeweled), Mahjong, hidden objects (such the Huntsville Mystery Case Files series), simulation (such as Sims 3) and time management (such as Farmville). There are emulation programs that let you play console games (Xbox, PS3 & Gamecube for example) on your PC and users can customize key settings. Most console emulators are not licensed by the gaming companies, so I’d avoid going that route. Lastly, there are some pretty neat gadgets out there that can be used by people with little to no motor function; such as someone with a high level spinal cord injury like Christopher Reeve. These gadgets use eye movements or speech recognition to control a wide range of functions on the computer (www.nuance.com & www.eyegaze.com are two examples). You can surf the web and write with both types of equipment/software and even create art with the optical devices. This type of technology can be a gift of freedom to those people who are otherwise “locked in.”

I hope my tips are helpful. Even if you’re done with all your holiday shopping this year (you’re lucky!), you can use these ideas for any gift giving occasion. I will be braving the mall and the crowds this year (and possibly snow). Try and choose meaningful & practical gifts that fit in your budget and remember that the presents aren’t the most important part of holidays. Wishing everyone a happy and safe holiday season!