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Wednesday, January 26, 2011

Undermining Be Gone

I was at wound care today. The surgeon that has followed my care, did the bloody debridements, has not seen my wound since December. This is a long time and what she saw today was nothing short of wonderful. The biggest obstacle I have encountered to healing, significant undermining, is virtually gone. My wound is largely superficial and about the size of a small meat ball. The wound bed remains "lovely" if not awesome. To me it just looks like raw chop meat. Regardless, the biggest problem, one that could have required surgery, no longer exists. Hence no surgery for this man. Indeed, there is a good chance the wound will be healed in one month. Yes, one month, four weeks, 28 days. This means I may ski in March. Spring skiing here I come! Okay, maybe this will happen. I have come way too far and been stuck in bed for way too long to take any risks. At worst I know I will be kayaking come spring. Life is looking quite sweet right now!

Here is a a vow. I will never ever put myself in the position I did last Fall. I will take photos, use mirrors ask family to check my skin. I have learned the hardest of hard lessons. This has me thinking: imagine a health care system that cares about paralyzed people. Imagine the lives saved if every paralyzed person had their skin inspected by a professional. Think of the savings. No wound care needed, no hospitalizations, no time lost at work etc. Yes, this is a pipe dream but nothing can spoil my mood today.

I also had a sweet if not wonderful exchange with two kids and their mom. My look has changed since the fall. No more long hair and pony tail. I now have short hair and a beard. My beard is white, my hair dark. The two girls I met were three and five. Theses kids were cute as a button and dressed in snow gear. After they cheerfully exchanged pleasantries with me they whispered to one another. I asked what the whispering was all about, they looked at their mom who gave the nod of approval and the three year old said I looked like Santa. Oh, how this made me chuckle. I can see it now-next Christmas I will dress up as a paralyzed Santa.

Monday, January 24, 2011

Stupid Stuff and a Great Divide

I have been living independently since i graduated from college. I have been lucky enough to have had and have a great life. Part of my great life revolves around being paralyzed. I do not perceive my disability as a negative--I never have and never will. It is just the way it is-I am paralyzed and that is a fact. I consider paralysis to be no different from any other human variation. Tall versus short, male versus female, fat versus skinny. We all exist on a continuum of sorts. Along with paralysis comes some unique issues. Urological complications abound which can be managed. Skin issues require constant vigilance. So what I say. No human body is perfect nor do all bodies function well. Mental illness can cause havoc as can cancer and a host of other physical issues. My bodily concerns are just more obvious and certainly unusual. As a result accessing health care--good health care that is--is more problematic. Too many doctors and health care professionals see me and think one thing--trouble. The point I am trying to make is that life as a paralyzed person is different. To me my body is normal, to others it is not. Doctors are pretty good at masking their views--they hide behind a cloak of professionalism. Your average person does not hide his or her views. Over the last three decades a veritable revolution has taken place in terms of disability rights. When I was paralyzed at the age of 18 I had no rights. I did not have the right to a public school education, I could not access mass transportation, and the country was grossly inaccessible. Simply put, disability rights did not exist. Today things are much different. I have civil rights that are protected by the ADA, I can access mass transportation and social barriers crumble daily. Yet barriers remain common place. As a result, I feel as different and apart from mainstream society as I did when I was 18. What has changed is the way that difference, my paralysis, is negotiated socially. Sometimes I encounter stunning bigotry and at other times my disability is not relevant.

What prompted the above thoughts? I am dependent upon others to help me. Nothing that my friends and family now do is important. What they do is ever so ordinary--the things I once did without thought. They go to the supermarket for beer or pick up my favorite rum, Sailor Jerry. They go to the post office, hardware store etc. All the errands I cannot run they do for me. On top of this family and friends do stuff around the house--change light bulbs, bring in fire wood, vacuum, clean bathrooms etc. I am exceedingly grateful for what people do. I could not exist without this help. But as I feel asleep I thought I am without a doubt a picky pain in the ass. I like things done a certain way. I acknowledge this as a weakness though when it comes to work it is an advantage. I can find citations from 20 years ago in a second and have copies of every article I have ever written. This attention to detail filters into how i keep my house. My home may not always be the cleanest place but it is always tidy. I know where everything is. Shoot I can find anything in the dark in the middle of the night. Given this, the way others help me makes me nuts--my friends and family do not know how, why or where i keep thing. Ad in my unique placement of household items as a paralyzed person and life can frustrating. However, after four months the frustration level is gone--I think where people put things is funny. My poor brother is "firewood man". He hauls in a lot of firewood. He does so with a smile on his face and never complains. In exchange he drinks my beer and eats my cold cuts--food he picks up and delivers to my house. He also drives me nuts. The other day he put away a rice dish I made (he also did the dishes without me asking). He put the rice leftovers on the top shelf of the fridge. He may as well have put the rice on the roof. He turns out lights not by switch on the wall but via the light itself. I cannot reach the light. This is not in any way a complaint. Instead it highlights just how different I am. He puts stuff on the top shelf of his fridge all the time. He is doing this without thought. Amazingly it is not just him. I even catch myself thinking like I was still bipedal. Years ago my son and I cleaned our hardwood floors. We used butcher wax and moved every piece of furniture in the house. On our hands and knees we buffed the floor. The wood shone like new. At the end of the day we stopped to admire out work when I saw an adult boot print on the floor. "Damn it, I yelled. Look what I did to the floor with my shoe"! He looked at me and I looked at him and after a long pause we both burst out laughing.

I am not sure what to make of my bodily difference. I do know when I am treated with an utter lack of respect due to the fact I use a wheelchair I get mad--very mad. I find such bigotry hard to fathom. But then all bigotry makes no sense to me. I think we humans fear difference and much of bigotry is based on that fear--the lack of familiarity with a given difference. What I concluded last night was that we need to have paralyzed people occupy all social and economic strata. Once we become commonplace our existence will not be perceived as being different. For that to happen we as a society need to radically rethink what is known about disability. We will need to support all people with a disability. We need to value the existence and contribution people can and do make. We need to stick together for I think a common bond exists between all people with a disability. Ed Roberts long ago called this bond "cripple power". A true visionary, Roberts was right. There is power in being crippled. We need to harness that power, form a strong political alliance and change the world as we know it. Now that thought gave me pleasant dreams.