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Thursday, October 14, 2010

Me and My Wheelchair: A Love Story

Every morning I wake up my black lab greets me with great enthusiasm bordering on a giant celebration. Tail waging, excitement coursing through every fiber of her body she lets me pet her head for a while. She then looks at me, directs her attention to my wheelchair and looks back at me. No doubt she is thinking "let's go have fun"--get up and we can play ball. Sadly, I disappoint her and me every morning. This little ritual I play out with my lab makes me miss my wheelchair--it is a visceral pain. I am in some ways in mourning. I miss my wheelchair, I miss the power it gives me to be independent. I miss the feel of upholstery against my back. I miss pushing against the tires and the intimate knowledge I have as to how I can direct it's forward thrust. Why I even miss the dirt I collect during the day on the wheelchair frame-an absence my lab misses as my tires clearly pick up smells that are utterly fascinating. I miss watching a scary movie and the way I slightly rock back and forth. I could go on but I miss my wheelchair more than anyone can imagine. Sure some other wheelchair users will get my sense of loss, people like Simi Linton who in my Body Politic wrote about her "cherry red" power wheelchair she named Rufus.

As I grimly greeted another day bed bound, I thought how many people are there in the world that I could share my views with. Not many, precious few in fact. Certainly not the average American. Nope, for most people without any knowledge of a wheelchair they see it as a mechanical device--at best. A wheelchair is a thing, a product, an inanimate object. Worse yet, many see and associate a wheelchair with inability, physical incapacity. Here, think Grandma, Grandpa and all the elderly cannot do. The symbolic association with with a wheelchair is not positive--it is the ultimate symbol of weakness and disability. This makes me crazy--how I wonder can the average American be so stupid. I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. But such thoughts remind me of how I feel when my body becomes sick--yikes, I wonder, why did my bodily systems fail.

So here I lay tapping out my words on a key board loving looking at my wheelchair. I wonder what my son would make of such thoughts? Surely the old man has lost his wits. He may be right in his thoughts but I think not. I think my obvious and intense feelings for my wheelchair reveal the great divide between those who use a wheelchair and those that do not. We are talking about a cultural gulf the size of the Grand Canyon. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. But some of see through this cultural bias--we understand it for what it really is--bigotry plain and simple. Frankly I am letting my emotions fly or as some in the body art community would say "letting my freak fly". I am acknowledging my love for a fire engine red wheelchair with its plain black upholstery, one brake, four wheels and superb ride. It is a part of me I cannot envision life without. Hence I mourn its temporary loss and look forward to the day we are reunited. And I know that day grows closer every day. My wounds are heal well and I am making steady progress. In fact, the wound care nurses characterize them as "beautiful". Of course, I look forward to the day they do not exist and know that day will come in the next few months. Then and only then can I be reunited with the most lovely wheelchair on the face of the earth.

Monday, October 11, 2010

Things I Miss Large and Small

It has been a month or so since I found my wound and am stuck in bed. Frankly, I shudder at how quickly the time has past. And no I am not having fun. Over the weekend it dawned me how much I miss doing things I took for granted. I am nor referring to work but rather the small things that make a life. So what do I miss? In no special order:

1. Kayaking: This is the best time of year to be on the water. Power boaters are few and far between, the heat of the summer is no longer a variable, and the changing color of the trees spectacular.
2. Driving: I miss my car. I love driving and once a week I would drive to new location for no reason.
3. Food: I miss cooking my own food and putting it on my own plate. I miss making my own sandwich, making coffee in the morning, getting my own beer and picking out the beer mug.
4. Tub: I miss soaking in a warm bath.
5. Cleaning: Hard to imagine but I miss cleaning my own house. Such mundane activities help me unwind and think.
6. My desk: I miss my desk where I always get my best writing done.
7. Grocery shopping:Another activity hard to believe missing. Ordinarily shopping is a chore but I miss picking out my own food.
8. Students: I miss the enthusiasm of college students. Even when they screw up, and they do, it is somehow endearing.
9. Puttering: Screwing around the house and letting my mind wonder. I do my best thinking organizing my files and book.
10. Splitting wood: I have a wood burning stove as my principal source of heat. I collect and split all my wood in the Fall.
11. Fire: I love to burn wood inside and out. I often collect wood and cook food over an open fire. I enjoy the unique wood fire provides.
12. My son: I miss doing stuff--anything together. Thankfully I knew long absence was coming so I was prepared. I have learned he does not like to talk on the phone or email so we text message. He sounds like a man now. Wow has he matured.
13. Routine social interaction: The hardest for me to imagine missing. I actually miss people. I miss the ordinary social interactions we do not think about.
14. Dog: I have an active lab I miss playing ball with. I love to see her run. Now I toss the ball from my bed across the living room floor. This is a very distant second to being outside.
15. Privacy: I don't get to be alone often. I value solitude more than anything else.

The above list is silly and is not intended to be sentimental. It is random at best and indicates to me how small and large factors impact our lives. The reality is each day I am in bed gets easier: I am resigned to my fate as it is for now. I know my wounds are healing, my skin care and wound care ideal. am doing everything in my power to heal and am making slow albeit daily progress. I sure as hell have my ups and downs--I remain very emotional, a basic case when compared to my ordinary life. But I have even accepted this. I worry all the time--I look at the wound vacuum a million times a day and am terrified of power outages. No power no wound vacuum or clinitron bed. So my mantra has become my dependency is temporary, a very short period of my life given the numbers of years I have been alive. This helps but not as much as would like. Instead of dwelling on this I occupy my mind, write, read, and put up a post such as this one.