For the exceptionally naive stranger, I am asked about my health status. More than one person has asked if i am terminally ill. When I reply that I am healthy and that my biggest problems are social and time related people look perplexed. No drama. No suffering. An ordinary life? Can't be. Of course there are specific and sometimes severe secondary conditions associated with paralysis. I manage such complications well. I have had one wound in 2010 that involved a nearly year long recovery. I have fairly typical urological issues that I will not bore you with. I experience pain in my hips--the lasting legacy of my wound in 2010. I can't really complain about the way my body functions. Frankly, I do not think about my bodily functions. My thoughts are akin to an unimportant app on my cell phone. The app is always running, drains little battery life, and is ever present. What I do think a lot about is time. Performing my ADLs to use physical therapy talk is a significant drain on my time. The ordinary is time consuming. I lose many hours a day doing the most simple tasks.
Consider today. I wake up and get out out of bed. Transfer one. I do my usual morning stuff. Use the toilet. Transfer two. I get dressed. Transfer three. I get in my car. Transfer 4. I get gas and put air in my tires. Transfer 5. I get pizza for lunch. Transfer 6. I go to the bank. Transfer 7. No one answers my messages about handicapped seating where the local AHL team plays. I go to the arena box office. Transfer 8. I drive home. Transfer 9. All these transfers take time. Finding parking spots takes time. Finding an accessible bathroom also takes time. Waiting for the bipedal person magnetically drawn to the one accessible stall I can get into takes a great deal of my time. Lots of needless waiting is my norm. Weird and skewed social interaction are also my norm. Even more time is lost when something goes wrong. Two weeks ago I drove a close friend to a doctors visit. It was a long drive. I knew at some point I would need to fill the gas tank. I noted my tires needed air. My friend pumped the gas and put air in my tires (a giant luxury). This is when things went askew. The fill valve on the tire cracked. Air gushed out the wheel and went flat. Great. We call triple AAA. We wait. Guy shows up. I get out of car. My dog kate must get out of the back of the car so the AAA guy can find the donut. He puts the donut on the car. Kate jumps into the back of the car. I transfer into car. We drive 4 miles to the nearest repair shop. Kate gets out of the car. I transfer to my wheelchair. The guy at the shop is very nice and quickly repairs the tire. Many criticisms are leveled at the shoddy tire valve on my fancy car. We agree VW deserves everything that will unfold in the coming year for cheating on diesel car emissions. Donut is secured and put away in its cubby. Kate jumps in the back. I transfer into the car. We lose at least one hour with tire repair. And here is the kicker we were lucky. Actually, I was lucky. The flat took place at a fuel stop off the interstate. The AAA guy was nearby. The garage that put a new valve on the tire was swift, exceeding polite and asked for just $15. What if I was alone and broke down on a side road? I choose to not think about this. Instead I am vigilant in terms of keeping my car well maintained. All inspections and maintenance are up to date. At the end of the day my hip was on fire. If I transfer more than 6 times a day my hip will hurt. It might hurt for five minutes or five days.
Disability: the time sucker of all time suckers. Nothing is routine. Nothing is easy in a world that is designed and constructed for the hordes of bipeds that roam the earth. I never cease to be amazed at the ignorance of others. This bothers me. How can people be so oblivious 25 years post ADA? Why do some people freak out when I appear? Why is my existence always seem to be a problem? Over the weekend I went to a small town diner. The person serving me was extremely nervous. She stood oddly far from the table as she took my order. Her hands were shaky. She spoke very slowly and deliberately. She spoke so loud one or two people turned to stare. Then she dropped the bomb. She asked me in the slowest way possible: will.... you.... need... help...assistance....to eat...you know... you know...to eat your food. I can cut up what you order. I can feed you. I took a deep breathe. I told myself not to lose my temper. I tell myself she thinks she is being kind. Getting angry will not help. She has likely lived in Central New York her entire life. She is old. She should not even be working at her age. She should be enjoying life. I put a fake smile on my face and say no thank you. I enjoy my meal despite dealing with ignorance and being unintentionally demeaned. As I leave I see the woman in question and her parting words to me are killer. It is so nice to see you out. Hopeless. The world is hopeless. Bipeds don't get it and most do not want to get it. I wish in retrospect I got angry. I do not mean I wish I raised my voice in ager (I never do that). I wish I had asserted my independence. I told this to a friend who told me I was in a lose lose situation. He joked if you told her you were a professor at Syracuse she would have patted you on the head and said good boy or gush I was an inspiration.
Finally, for those that think I am too harsh below is for your viewing pleasure. Each and every question and multiple variations I have heard over the years.