"Perhaps the desire to find more understanding in people's hearts is one born out of living with health issues and epilepsy."
Human beings in the world today will all most likely experience some form of health issue or disability during their lifetimes; it is a part of being a person on Earth. I was born the picture of what many parents hope for, a healthy blue-eyed baby boy. It didn't take long for a health issue to appear in my life, one that far too many children today have to endure. The, 'health issue,' involved trauma due to the loss of a parent, but it was only the first.
Nine years after the my first encounter with health issues and disability, another followed. A heat stroke while in the military left me with epilepsy, another health issue/disability that many people are very familiar with. My reaction was to essentially, 'spit in the face,' of these health issues and do my best to move on with life. Mobility on my part was not affected - yet. Well, almost...a person who experiences gran mal seizure activity is not allowed to drive, so the effect on my mobility was that I had to ride the city bus instead of driving as all my friends were doing, at least until the seizure activity was controlled.
The point is not to somehow, 'poo-poo,' either trauma or epilepsy; not at all. From a mobility perspective though, I could still:
Trauma and epilepsy were certainly quite the introduction to the world of health issues and disability, but on the whole I could still ride my unicycle all over the city of Seattle, go out and provide hands-on care to others as a nursing assistant, walk to campus to attend classes etc. To look at me at the time, you would be hard-pressed to tell that I experienced any form of health issue or disability - I looked like the local football star at 6'1" and 210 lbs. Life was about to remind me that at times, being there for others comes with a price.
The Health Issues
Honesty? Epilepsy scared me senseless. Gran mal seizure activity very nearly killed me on more than one occasion. It brought an awareness to my young mind that would never have been there had I not experienced the heat stroke that caused it. I understood, very well in fact, that people at times do need help from each other and I started doing just that; helping others.
Over the next many years (I am now 50), my feet, ankles and knees started well..., 'wearing out.' An incident with a fellow veteran who has quadriplegia found me being diagnosed with osteoarthritis in all of my lower joints. Surgery on my knees followed and suddenly those stairs became an enemy. A foot doctor told me that lifting more than around 25 pounds could very well break one or more bones in my feet - no more heavy lifting. Running? Out of the question. WalkingWell...how about, 'wobbling' I began paying much more attention to the levels of accessibility different places had. The unicycle was sold and so much for it.
Braces, for Knees and Ankles
Here they came - doctors with their flavors of solutions; one after the other. The surgery went uhm, 'well' I attempted to walk out of the surgical theater while under and the anesthesiologist grabbed me by the hair apparently. The surgeon said something to the effect of, 'Ok, guess we're done,' and a part of my mind took that as meaning I should leave. Dopey Thomas apologized oh - 20 or so times as I was trying to shake off the effect of the anesthesia.
I found myself with the first pair of knee braces shortly afterwards. The Ankle-Foot Orthotics (AFO's) were not far behind. The knee braces did and do help (second set at this point), and the AFO's as well, although a good pair of high-top shoes isn't a bad substitute when needed. Where did that football player looking guy go
Mobility was becoming more and more of an issue and very plainly so. For a person who had always been a bouncy kind of guy, this was very much a new way of thinking about life and living it. The learning has not stopped and thoughts about future mobility issues are ever-present. What kinds of options are there for a person who experiences osteo issues to the degree I do
Canes and Walkers
One of the first things I reached for was a good, solid, hardwood cane. The flimsy little medical metal numbers are canes that I truly worry about leaning on, bending, and then falling on my rear-end because of. A good cane is wonderful for keeping me away from that, 'tipping point,' in a wobble as I walk so I don't end up on my tush.
More than once I have been asked if a walker would help me. The truth is, I am as concerned about these medical walkers as I am about medical canes. My concern is that one day I will stop, sit on the little bench on the walker and fall straight through. I am a 6 foot guy who now goes around 235 pounds. I just don't trust a walker to bear my weight, and I don't want to add to any developing osteo woes in my back by using one.
As my level of mobility has decreased, I have watched other people who use walkers and canes to see how well these items serve them. To be plain, I have never seen a 6 foot guy using a walker before. My friend with quadriplegia has a power wheelchair and he is over 6 feet tall, yet other than him I haven't seen a tall person using a wheelchair either. I am concerned, to say the least.
Manual and Power Wheelchairs
More than once I have used the electric carts at certain stores to get around when my joints are aching so badly I had trouble walking. These little store carts are a far, far cry from a good Quickie manual chair. Part of me wants to contact Social Security or the VA about a manual chair, but part of me hesitates. The debate over keeping your joints moving when you have osteo issues is prominent in my mind, but like every single person who has used a wheelchair - it is a learning experience.
The osteoarthritis I experience is indeed progressive. At some point I will use a manual wheelchair, it is just a question of when. A good manual wheelchair would certainly be a good thing for me to have for use in stores and places where I would otherwise have to wobble around for long periods of time. I would like one, but part of me wonders if a manual wheelchair would do damage to other joints in my body such as my shoulders, elbows, or the disks in my back.
Thoughts about a power wheelchair have largely sprung from the experiences of others who have osteoarthritis. For example; there is a woman in my neighborhood who is a few years younger than me who also has osteoarthritis, the same degenerative kind. She has the same issues with her feet that I do, although she does not have the, 'osteosis,' I do on my ankles. Her name is, 'Ruth,' and she has been using a power wheelchair for several years now.
Ruth is a friendly, kind and loving person and I am glad to have her as a neighbor. I have been learning quite a bit from her; she started using a power chair because she broke a bone in her foot. Her doctor told her several other bones in her feet were at risk of breaking, the same diagnosis I have. She told me not to worry about using a power chair because there are van services even in little old Pueblo.
I told Ruth that the main concern I have with wheelchairs in general, manual or power, had to do with my height. You just don't see a lot of 6' guys using wheelchairs, I told her. Ruth looked at me and said, 'At times, Tom, you have to trust the medical technologies available.' I tend to agree, but it still troubles me. Wheelchair users, am I being silly
What It Comes Down To
You know, I could most likely apply for and receive a power wheelchair from Social Security or the VA. What is stopping me? Tell the truth and shame the devil...stigma. People are already looking at me far differently than they used to, whether they intend to or not. At 6 feet in height, I have always looked down on other's heads for the most part. Using a wheelchair would mean a change in physical perspective. It would mean I finally have accepted that the joints in my legs are shot and it is time for me to think of osteoarthritis in a different light. For a decades-long nursing assistant, it would entirely change the focus of my life from one of caring for others, to one of being perceived by others as a very noticeable person with a physical disability. If only more people would understand that disability is one part of a person's life and not the entirety of it.
Perhaps the desire to find more understanding in people's hearts is one born out of living with health issues and epilepsy. Maybe it is something I am just wishing for as the world turns nastier. It may be that I am simply avoiding the realities of my life. Whatever the case, the part of my life that is labeled, 'disabled,' is indeed just one part.
I feel guilty because I probably should already have a manual wheelchair, if not a power wheelchair. I feel glad that I have not chosen to get a wheelchair because it means that I am, 'doing the right thing,' by attempting to stay on my feet and knees for as long as I can. I feel mixed up because I don't know what the future will bring, or if my reactions to the mobility issues I face are as they should be. Your input is greatly valued, wheelchair users, you are my best advice right now.