Saturday, 17 September 2011

Killed by Death

I headed off around noon yesterday on a 1.5 km journey in my wheelchair to the local medical centre where I've been having acupuncture. It was a magnificent day, nice and warm and without a single cloud visible in my 360° field of vision. For the first time since before winter, I was without a jumper or over-shirt.

I was dressed in cargo pants and one of my heavy metal T-shirts. I've been growing my hair since late last year, it is not yet long but it is long-ish in that it covers my ears on each side and if I were to pull the hair in the front down* it goes past the tip of my nose and is almost long enough to be held between my lips. I had not long since showered, and my hair was damp and blowing gently in the light breeze. I was listening to music through earplugs played by my smart phone as I set off on my way on what was usually a 20 to 30 min journey, dependent upon my luck with the traffic lights.

I have been listening to a lot of music lately, as I have throughout my life, although there had been a period from around early last year to two or three months ago where I found myself listening to very little music (if any at all). I don't know why that happened, I would think it had something to do with the depression I had experienced during this time. I think that it was in this period that I found very little joy in anything, music included. But that was not so now, I have begun to enjoy watching movies, reading and, especially, listening to music. My old friend has returned.

My smart phone has quite a large storage capacity, and I am able to store lots of movies, books and music so that I always have something handy if I find myself sitting in a waiting room, or somewhere equally as boring, to keep me entertained. I have selected a few albums which I dub my driving music. It is basically a selection of hard rock, predominantly from the 1980s, that I listen to when I am cruising along in my wheelchair.

Yesterday I happened to be listening to some Motorhead as I set off down the footpath, as fast as my electric chair could take me. Suddenly the thought occurred to me that I've gone back in time, that I have turned back the clock 18 years. At 36 I'm not too dissimilar to who I was when I was 18, far more so than I was at 26 or 30 or 32. It's like I set off on a journey at age 18 for as many years, and now I have returned to where I started.

At 18, I still lived at home with my parents, I had very poor self-esteem and I had no real sense of direction and a chronic case of teen angst. I had long hair and a fairly arrogant exterior. I wanted to make my life better, but I didn't know how. I envied everyone around me - many of whom I loved, loathed, hated and cared for deeply, in equal measure.

Now I seem to find that much of the music I am listening to at present comes from my teenage years, like I have rediscovered these artists and albums all over again. Moreover, I seem to be watching movies and old basketball games from the same period. I'm growing my hair again, and I have no explanation for it other than that I want to.

My perspective on life and my place in the world has also begun to alter. I'm no longer as embarrassed about my fate as I have been over the past 2 1/2 years. Other people's opinions have taken on a kind of superficial quality, they don't hold any power over me anymore. It is a strangely liberating experience to realise that once you lose the things that you loved most, once that happens and you survive it, there really is very little left to fear.

I used to be quite a worrier and fairly highly strung, because I was, underneath it all, terrified of losing what I had. The one thing I valued above all else was security and stability. I am only now beginning to appreciate that I have seen off my worst nightmare and survived. That doesn't make me special, because I tend to think that most people can get through most things. I see this as an aspect of the human condition, we are generally adaptive creatures and most people, thrown in the deep end, make the best of what they have.

Yet I see my journey from 2009 as atypical; few people lose as much so quickly - as I did when first my health deteriorated, then my independence ended, my career was aborted, my desire to one day have a family was crushed and my ability to live in my apartment was taken from me.

I've had this dream where I'm on top of the hill in the middle of a storm, the sky is dark and the rain is falling heavily with lightning flashing non-stop across the sky. I'm not in a wheelchair, I'm standing there and am looking up into the fierce storm clouds and I am screaming to the sky, to God, to the universe, to whatever is or is not out there:

Is that the best you've got? Is that all? You lost! I'm still here! I'm still - fucking - here!

At that point I wake up. I've had the dream about three or four times now. It's probably based on something I've seen on TV, I remember a similar scene in 'the Truman Show' at the point where Jim Carrey's character realises his whole life is fictitious.

But back to yesterday and my trip to the acupuncturist, I was listening to Motorhead's song Killed by Death when it hit me that not only did I relate to the song itself - about not giving up or quitting for anything, for any reason, until 'Killed by Death' but that perhaps I shared some commonalities with Motorhead's front man Lemmy himself.

Lemmy's well and truly past his prime, but is still going strong and although slowed somewhat by age and a lifetime of hard living, he shows no sign of retreating into retirement. Likewise, I am middle-aged for someone with a muscle disease such as I; and my strength and mobility are deteriorating at a far quicker rate than, perhaps, I expected when I first started to notice a deterioration three years ago. Although my wild days are well and truly behind me, I'm not ready to curl up and die just yet. I'm not going to just shut myself away anymore, I tried that and it's just not my style.

Additionally, people have joked that Lemmy can't be killed with conventional weapons - an allusion to his legendary fast lifestyle and ability to consume copious amounts of liquor and other substances. Some have said he makes Ozzy Osbourne look like a Boy Scout. Although I probably partied enough for three lifetimes, that is not the link I am trying to make here. It is that I am somewhat surprised that I'm still going given that I've had surgeons hack me to pieces, I've had metal screwed into me, I have had things taken out of me, I've fallen out of my wheelchair more times than I can remember and had more head knocks than Mike Tyson, I have had pneumonias, hernias, bones fused, tendons cut and more medication than some entire villages would consume in a century, but I'm still here.

I'm still... fucking... here...

The point of all this is that I think I need to give myself some more credit for making it as far as I have, and I think that perhaps a return to thinking a lot like I did in my youth is probably a good thing. Somewhere between law school and the public service I started to take life a little too seriously, and I started to overvalue things. Then in 2009 my world was destroyed at a frightening pace but now I see, even though it took me two years to do so, that I am still here. Even if my strength deteriorates further, and I know it will, 'it' can't win unless I let it.

The way I see it, I have made it halfway back. Halfway, because I have rediscovered a part of myself from an earlier time; the part that motivated me to want to make something of myself as a high school kid. The part that can look God – in a literal or metaphorical sense, it doesn't much matter – in the eye and chide him/her as being nothing more than an overgrown child with an ant farm and dare him/her to do a better job of making life more difficult for me.

But I don't yet know to best help myself, I don't know how to put the smashed window back together again. Though, the very fact that I want to, that I really do want to forge ahead and craft some sort of a life for myself out of whatever I now have left is a considerable improvement from where I was six months ago.

In the short term, I would like to return to regularly posting on this blog. I don't know how many people actually read this stuff, and I don't need to - it's not why I do this. There is a therapeutic benefit I find in writing these entries, they help me to order my thoughts. Because I am still trying to understand many of my behaviours and actions, the most important thing in the short term is for me to finally write the entry on disability sexuality issues. I have been putting it off, but I really need to do it. I think it will be a cathartic experience, once it's done. 

Beyond that meagre goal, I don't know. It would be nice to get an epiphany, but that seems somewhat unlikely. I'll let you know if something comes to mind.

* My fringe - although I won't have a distinct fringe once it grows out to be the same length as the rest of my hair.

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