Gloves for Everyone

By Kelly Rouba

All too often people without mobility restrictions take for granted the ease in which they are able to manage their personal care—from brushing their hair to bathing to putting on clothes. It is mundane tasks like these that can prove to be the most frustrating for those of us who struggle to accomplish them or simply cannot do them at all.

As someone who has difficulty with activities like putting on socks or styling my hair due to severe arthritis, I know that it can be embarrassing or bothersome to have to ask for help from others. In the past, there have been days when I simply couldn’t bring myself to ask or no one was around to help. In some cases, I just forego doing certain things all together, like putting on a hat or wearing gloves. Because of the limited range of motion in my shoulders, I cannot put on a hat. And whereas gloves are concerned, my fingers have so many contractures that I can only wear mittens, which I find to be restrictive and juvenile (sorry to those who like wearing them!).

However, from time to time, a stroke of luck comes my way and I happen upon an adaptive device or unusual product that allows me to accomplish things that I could never do or struggled with doing before. In fact, this very thing happened just a couple weeks ago when Christy Gibney, a darling woman I have collaborated with on work-related projects, made my coworkers fingerless gloves, so to speak. Although Christy made me a scarf, she quickly got to work on a pair of gloves for me after seeing how easy it was for me to put them on due to their design and that I could still maintain the function in my fingers.

Within a few days, my very own pair of blue gloves arrived at my home. My mother actually cried when she saw them because it has been years since I’ve worn anything to keep my hands warm when outside. It always pained her to watch me go out of the home in the cold. That evening, I proudly wore my gloves when we went out to eat and the warmth they provided to my fingers was an amazing feeling.

It is my belief that this type of glove would be beneficial for many people with disabilities and even those without. According to my coworkers, they are able to do so much more—from caring for their children to operating their cars—with these gloves than they could in regular ones and none of them have a disability.

Christy informed me that the pattern for fingerless gloves is available online; she also told me there are a number of knitting groups that donate items they knit. Those who can’t knit or don’t know anyone who does may want to search for these groups online in order to submit a request.

I am very grateful for Christy’s generosity and for eliminating one of my lifelong struggles. It’s a great feeling, and I hope readers of this blog find the gloves just as helpful.

Haiti Crisis and its Impact on People with Chronic Illnesses

By Kelly Rouba

Oftentimes, people take for granted the basic necessities in life, like water, food, and even shelter. Once these items are taken away, only then do people realize how vital they are to sustainability.

A perfect example of this can be viewed daily on the news as Haitians forcefully push their way to the front of distribution lines–desperate for anything they can get. It’s unnerving to watch their desperation and to see the tearful, panicked look on their faces. I am both concerned for their welfare and horrified at how food, water, and other items are tossed out of helicopters to these folks as if they are animals.

What also worries me is that while there is a tremendous need for food and water, the need for medicine and medical supplies is even more dire. So far, I have heard reports of agonizing medical procedures being performed with little or no anesthesia, which horrifies me and should never have to happen.

Moreover, as someone with severe rheumatoid arthritis, I know that missing even one dose of my medication will leave me in extreme pain and unable to function. Unfortunately, I missed a dose of my prednisone a few months back and was not even able to get out of the chair I was sitting in because my arthritis had flared so quickly. I simply cannot imagine having to go days without it and having to bear such excruciating pain again. My heart is aching for those in Haiti who are now in this situation and have to deal with restricted function and pain.

With this in mind, I encourage everyone to donate to relief efforts, like those initiated by the American Red Cross, and to contact health-related foundations to see if and how they are helping. Perhaps they can unite, just as Portlight Strategies is doing, to send over much needed medical supplies. Let’s come together for the good of man-kind!

Test Time

I thought it would be a good time to write about depression because I am really depressed today. The psychologist at Craig Hospital, where I did my rehabilitation, said depression/self-pity was an okay place to visit but a bad place to set up residence. My wife and I had a heated argument yesterday, very unusual for us. She accused me of lying to her about the availability of the money to finance our new van. She even went so far as to tell our son, a 39 year old civil engineer, I lied to her which pushed me off the deep end. Prior to my injury I got vigorous physical exercise every day which took care of most of my frustrations. I do not have that luxury anymore. I did smash my hand into the computer keyboard until she moved it. That felt good, until today. In all fairness to my wife she has been under a lot of pressure lately. One of her sisters was recently diagnosed with pancreatic cancer and another with Alzheimer’s, plus she has some health issues of her own.  She is on edge and rightfully so.

What I’m really interested in, however, is me and my reactions. When I get depressed I begin to question my quality of life. I tell myself living in this chair is not quality of life. I live about 20 miles from the Canadian border and we have long, cold and snowy winters. As a result, I do not get to go outside and poke around like I can in the warmed weather.  Cabin fever is also a player.  I ask myself is this any way to live?  Then I start thinking about suicide and how I would do it. Most commonly I think about overdosing on my meds, hanging myself on my track lift (poetic justice) or some other gruesome way of solving my frustrations. I stare out the window, turn silent, refuse to eat or drink and occupy my time with some mundane task. The last 12 years of teaching I taught high school students who had emotional and behavioral problems. My behavior is classic passive aggressive.

Wikipedia states “Passive–aggressive behavior (negativistic personality trait) is passive, sometimes obstructionist resistance to following through with expectations in interpersonal or occupational situations. It is a  personality trait  marked by a pervasive pattern of negative attitudes and passive, usually disavow resistance in interpersonal or occupational situations. It can manifest itself as learned helplessness, procrastination, stubbornness, resentment, sullenness, or deliberate/repeated failure to accomplish requested tasks for which one is (often explicitly) responsible. It is a defense mechanism,  and usually only partly conscious.”

http://en.wikipedia.org/wiki/Passive%E2%80%93aggressive_behavior#Diagnostic_criteria_.28DSM-IV_Appendix_B.29ed

After I’ve wallowed in this self-pity for awhile I begin to think about the consequences of my hypothetical actions. How would my children react, my grandchildren, my great grand children, the students I taught and the people who went out of their way to reach out to us after the accident? I have chosen to present myself as an example of how people can deal with the challenges they face.  I have spoken in many schools about the inner strength which lies in each and every one of us. What would they think if I did something so stupid?

After staring out the window for a long time my eyes will begin to focus on the view. Things are so beautiful where I live even in the winter.  Why would anybody intentionally leave this beautiful place? I spent months struggling to recover from my accident. I fought to live, I wanted to live, I want to live and I do have quality of life most of the time. Being in this chair, having to have someone assist me in the morning and help me get dressed is a small price to pay for being alive. What good is feeling sorry for myself going to do for me? I remind myself everyone has good days and bad days. I listen to REM’s Everybody Hurts (click on the link below) and remind myself that it is normal for anyone to have down days.  As the psychologist at Craig said it is okay to visit but no place to establish permanent residence. Don’t you agree?

http://www.youtube.com/watch?v=S2N_uvnvGbI

Avatar – A broomstick stuck through the spokes in a wheelchair.

By Professirx

Take a look at these 3 videos. This is what inspired me to write this blog.

http://www.facebook.com/l/38c78;www.youtube.com/watch?v=2OyrXd-uZRE

http://www.facebook.com/l/38c78;www.youtube.com/watch?v=lZ1Z9-Hdmrs

http://www.facebook.com/l/38c78;www.youtube.com/watch?v=CbD8QVNuXZM

OK,I said, ”Let me check out this movie, finally someone with a disability is in a box office smash.” Boy was I wrong. I spent 2 hours waiting to get to the point of why this paraplegic was involved in this virtual world. Was he going to find a cure and walk at the end. Why did he even have to be paralyzed for this story. I never got to understand the impact his paralysis was going to inspire. Oh sure, I must be a hermit because I didn’t even know this guy has been in other movies and to my surprise, he can walk.WTF . I need to watch moves more. Yea right. Outside of the disability issue in the media, the movie is pretty dam good but this is bullshit. The actor is a great actor, but the role could of been played by a real paraplegic. Sigourney Weaver was suffice enough to draw an audience.

But Professir X, if the actor was really paralyzed, how could he could do all that running and jumping.

Dude, it was a computer generated image, the flesh and blood man only spent 10 minutes in this film. Did you not see the video where Christopher Reeve walked, that was superimposed.

OK my point is this. with today’s technology, anything’s possible, able or disable. I don’t know about you, but disability is the new Black. The media is discriminating us from our human rights to get a fair chance. I Rallied for Stem Cell, the Christopher Reeve Paralysis Act and other causes , I found an organization who’s mission is to help aspiring disable actors get into the media. I wrote them last year, haven’t received a reply yet, hey give them some time , they may be busy on their own agenda huh.

Well 2010 wasn’t a year I wait on a phone to ring before I move. I will always rank as soldier, Christopher Reeve will forever be General, but my mission for 2010 is to collaborate with as many others as possible. Make our own and share it all over the world. We have the Internet, you can get a camera for under 200.00, get you ideas on video and upload it all over the web. I truly have to thank the Christopher and Dana Reeve Foundation, they made it possible for me to continue to bring awareness for Spinal Cord Injury. I also thank Leroy Moore for his work with Krip Hop. Bringing aspiring artist together and not waiting on a so called Hollywood decision.

If anyone with a disability is interested in collaborating. Read this article and send me your material.

http://www.facebook.com/l/38c78;communities.kintera.org/REEVE/forums/thread/68794.aspx