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Has Fate Cheated On Me?
Written by Lane on Wednesday, July 1, 2009
OK, so it’s not really fate, it was a drunkard, but I wonder if I’ve been cheated out of the small number of joys that mark the path to transabled tranquility.
It goes without saying that transabled.org is one of the premier BIID sites on the internet. It rose to this level through the special care given to it by its creators, but also through the generous contribution of its various authors.
Some of those authors have contributed stories that have universal appeal. They beautifully articulate the high and low points that accompany each of the milestones on the way to their ultimate disability. I have enjoyed lots of these stories, but it would be hard not to be touched by Claire’s "And the Universe Shifted" and Chloe’s series of articles about how she procured a mediocre chair and braces, then secured an Rx from her GP. These stories and many others document the progression of many others growth as people and as transabled people – gaining confidence and resolving the internal conflict that results from having a body that does not match ones mind.
For me, I wonder if, although I have been given many gifts, if I have been cheated at the same time. When I was young, I did the same pretending things – visualizing paralyzed legs, making braces and diapers, stealing a ride in whatever (hospital) wheelchair I could. I was especially pleased when I found an old, unused model in my grandmother’s attic. As I grew older, though, I never had an opportunity to be put to the test of character that so many others have had.
Old clunker of a hospital wheelchair
By now, you know that I had an unfortunate accident that resulted in a litany of physical (and psychological) injuries. My first adult wheelchair experience was in a hospital, barely able to sit up, puking my guts out (try that with your mouth wired shut), and in terrible pain. Kinda like Ahiru’s "Chrissy’s Perfect Life" (#145), but without a hint of the premeditated fun. Of course, if was medically interesting and the transabled component sure wasn’t lost on me, but the other stuff was just too overpowering.
Of course, both before and somewhat after the accident, I have dreamed of the hospitalization and rehab that would be required for an SCI, but my heart really goes out to those with more complete SCI injuries. There’s no getting around the fact that the experience is highly traumatic. Don’t take those stories you hear about patients "taking it all in stride". I would describe myself as an optimist and I think I did this to the best of my ability, but it still feels like you’ve been kicked in the head by a horse. This is a HARD thing to go through.
Which brings me back again to the new wheelchair experience. Looking back, I have intense regret that I progressed as I did through rehabilitation therapy to walk again, but after about two years, I was able to walk reasonably well again. During a portion of that period, I had a hospital chair (one that was always considered to be very temporary by those around me), and it provided little satisfaction. I used it a work and most situations when I couldn’t struggle to move around with crutches. My family, you see, put immense pressure on my to progress in a certain way. I’m sure that some of us her can relate to the power of family.
Years later, I finally got a modern chair. It was through odd circumstances that I probably won’t fully go into on TA. In brief, the aftermath of the accident destroyed my finances, so family did help me out, but at the same time, controlled my life – even when I was married. They intervened with a doctor they knew and with a DME they knew through a friend and successful got me a chair that … didn’t fit worth a crap. My parents, in their way of "helping", yet controlling way, aborted therapy on several occasions and left me with a life of 1/2 disabled nonsense. Phew. I’ll stop venting now. It’s no wonder that these events can either bring families together or rip them apart.
So that’s chair #2 – a piece of semi-junk that I’ve lived with for seven years. This time, due to the lack of the full support of my parents and wife, the chair has been relegated to long distances and other "extreme" circumstances. Again, there was only aggravation – maybe more than before. There certainly wasn’t the sort of epiphany described by others here. I have loved living vicariously through you guys for a few moments, but it bums me out that I have missed out on that.
Now, I’m on the verge of finally taking a step in the right direction. Probably largely due to better psychotropic medications, I’ve decided to finally take greater control over my life and my future. I’m in the process of acquiring a proper modern chair and I WILL be using it daily for work. I can’t count on it for use when my wife and children are present, and that will be tough, but I will take what I can get.
I’m on the edge of my seat waiting for a respectable chair, something that will quell the BIID pain, and knock down the physical pain for a good part of each day.
In the end, I do feel that I have be cheated out of the out of the crystal-clear, quantum shifts that some of you lucky souls have been blessed with. I have a hint of jealousy, but I guess I can be satisfied with gradual shifts that move me closer and closer to my goals – just like anyone else. Baby steps are good too – maybe they help people with certain personality types keep their head on straight. At this point in my life, I have greater clarity on my BIID than ever before.
And don’t believe for a minute that I am not 110% happy for those who have had these wonderful experiences and discoveries. Congratulations! Soon, I hope we can all have have stories to share of experiences of an altogether different sort.
Tags: BIID, Disability, Pain, Transabled, Wheelchair
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3 Comments
I had to read this post several times. You cover a lot of intense and interesting material in a short amount of space.
For me, the most powerful line is “There’s no getting around the fact that the experience is highly traumatic.” Yes. I know that this is going to be the case. I don’t expect that BIID will protect me from this. I expect tears, grief, and depression. Yes, this all scares me; but being scared doesn’t stop me from doing things.
The only experience I have to guide me is the genital surgery. I was scared of that too. The recovery was much longer, much more painful, and much more bloody than I had imagined from anything I had read or been told. Nevertheless, I had not even one millisecond of regret. I am optimistic that I will at least be spared regret after I get a complete SCI.
Thank you so much for sharing your unique experience with us, Lane.
3 On 1 July, 2009, Lane said:
@Chloe You’re welcome. Thanks so much for writing about your experiences, too. I’d like to explore these two, related topics more in the future.
For now, today, screw fate - OMFG!!!! this new chair is amazing. It’s such a huge advance over the worn-out Q2. I would NOT have believed it. I’ve had a Cheshire grin all day today at work. I will be writing about it in detail this evening.
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1 On 1 July, 2009, Sophie said:
Nice to see someone enjoys my stories that come from transabled feelings…
It’s a good point though about SCIs and being in hospital is hard. Intellectually many of us here “know” that fact but there’s no way it would hit home until we went through that ourselves. It’s a point most genuinely disabled people like to point out, we haven’t been through that part like they have.