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Doors Are Hard
I need a cup holder for my wheelchair. That’s a sentence I scarcely believed I would say, but it’s true. Perilously I position my steaming hot coffee between my legs and roll to my table, staring mostly at the coffee and my frightened and soon to be scolded balls. If I continue to do this everyday, I will be so anxious and paranoid that my balls will be burned by the mighty hot fury of espresso and coffee that I will never leave the house. I should get a cup holder.
Speaking of which, I got a wheelchair this weekend. Thursday, to be exact. I’ve had a few days to work with it. It’s much more challenging than you may think. I’m paranoid that I’ll run over someone’s foot, and doors are hard. What’s hardest, however, is how the chair affects my brain, and in turn, how it affects how I see my own beauty. Let’s talk about it.
For those who don’t know, I have bad legs. To be specific, I have a bad spine. Because my spine is rotten, my legs are beat too. Those are all the medical terms, by the way. The actual medical term is spina bifida. I’m sure you’ve heard of it. It seems to be a punch line in a lot of jokes. I guess the name is funny. The Jim Norton bit was the best, in case you’re wondering. There are a lot of degrees of it, and comparatively, I have it pretty easy which should tell you something. Dig some info here: http://www.spinabifidaassociation.org Some of the information may actually surprise you; like spina bifida is the most common permanently disabling birth defect in the United States. Bet you didn’t know that. Not a lot of folks do.
So here’s some history. I pissed in the bed and out of the bed way beyond when I should have been potty trained. I was a smart kid, or so my mother claims, so it didn’t add up. Thinking there may be something bigger happening here, we head to Children’s Hospital of Philadelphia, which is a remarkable place. When I was little, I thought every place had a hospital like CHOP. I still find it strange that CHOP is pretty unique, and I’m glad it is in my area because I was availed to their services. Long story short, years of leg and spine pain, doctors, surgeries, needles in the spine, creepy old doctors with spiced cologne touching my wiener. Blah, blah, life sucks, everyone has a story and mine is no more special or more traumatic than anyone else’s. There are a few things I remember very clearly. One is a good thing. I remember my folks taking me to Cooper or CHOP or Penn or Jefferson or whichever hospital we had an appointment for that day, and after the test (be it an MRI, epidural, EMG, facet block, malogram, catheter bladder stretching, et cetera) we would go to the Franklin Institute Science Museum in Philly, or the Museum of Natural History. They are probably some of my greatest memories. You know those kinds of memories; they are the ones on whose shoulders you rest when the walls are caving and the light is growing dark. Those memories carry you to where you can accept your strength and persevere.
Another thing I remember clearly had some more impact on my day to day as I aged. I know my mom reads this, and I’m pretty sure she doesn’t remember this, but I remember sitting in a hospital room. I had just gotten a test of some kind. I was about six or seven years old. She was a woman doctor who walked into the room with the chromatic, reverse images of my brain and neck and spine and hips. I sat on the floor playing with some toy that was in the room, placed there to distract the kid from the horror that the white coat has to share with the parents, I assume. She said to my mom and dad, “He’ll be in a wheelchair by thirty.” This was my first Atlas stone to carry on through life.
I was still standing, albeit with a cane, on my thirtieth birthday. A few days after my thirty-second birthday, I’m pushing myself around in a chair with wheels. Beat the prediction by two years. Not bad, I guess. In the time between age seven and age thirty-two, I grew a carapace to, in my mind, protect the people around me from how I really thought about my disability and the years of ‘treating’ it. I did things I probably oughtn’t have. Acted as if I had absolutely nothing different about me. Flash forward to this weekend. I take the chair with a certain sad excitement. Nearly everyone in the day to day stage play of my life reacted with shock and surprise. “When did this happen?” and “Are you OK?” and “I didn’t realize it was that bad,” and “Are you sure you need that?” I suppose my shell was a good one. Few exceptions, of course. Dave, my illegitimate twin is one, and I love him for it. Dan being another, and I love him for it. He seems to enjoy pushing my chair, so push away, my friend. My beautiful girlfriend gets it, and I love her for it. My folks, and a couple others. I didn’t realize that this had such an impact on other people until I started receiving texts after posting a chair photo. I thought Steph was going to cry. Meghan made me understand the gravity of all of it. The stunned reactions of the coffee girls too. All I said to each was, “It’s that time.”
Why am I talking about this, and why are there no jokes in this blog. Both good questions. Here’s a joke. What can a woman vampire on her period do that no one else can? Drink herself under the table. Man, that’s gross. Sorry, mom. I’m talking about this because this is one of the biggest moments in my life, and as I said earlier, I don’t know whether to be excited out of my head that I’ll relieve some pain by not moving as much and have some semblance of freedom back; or to feel horribly sad that this is where I am now in life, a thirty-two year old man (with no skills or much of a career future) in a chair because of something he couldn’t hope to ever control in his life. An act of God. I don’t know what to think, and maybe you kids can help me.
Does this fracture my beauty? After all, that’s what I’m supposed to be writing about, right? Right now, yeah. It does. I’m not in the most beautiful mind right now. I’m sure a tattoo or a piercing would help. (Who wants to push me into the shop?) This whole ‘be strong’ thing is wearing thin. Much like my hair, though calling it ‘thin’ is more than generous. I am very tired and I could use a break from real life for a little while. But real life got a little more real this weekend. This isn’t one of those ‘value what you have’ bullshit rants that no one takes to heart. I sure don’t. There are very few things I’ve read that have made me feel that way. (See also; Cobb by Al Stump. Ty Cobb: “If I could do it over, I’d have had more friends.” That one gets me.) This is just my letting you cats and kittens into my head space a little. I appreciate your support too; I’m looking at you, Becks and my Rodgers girls. I think I owe you loyal readers at least a little of what my reality is like. Or this may just be a 1300 word apology for getting the blog out so late. Maybe a little of both. At any rate, you guys are welcomed to push my crippled ass around any time you’re in Philly, and by that time, I’m sure to have my brain in a better spot to accept this drastic change of life. Right now, though, I think I’ll stay in the mellow for a little bit. I’ve earned that, right? Stay beautiful, kids.
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