I'd like to say it hit me like a bolt out of the blue. A shuddering realization about my life, my mortality, my real fate; but the truth is, like the lingering stench of cat piss on a second-hand sofa this realization has been delicately assaulting me for years now. Covered up with pith and vigor I ploughed (sloughed?) on through my days, determined to think that something, at some point, was going to change. Things couldn't possibly stay like this.
I was born normal. To a normal family. I look normal. I think normal. I am therefore, surely, normal? Even my rebellious teens filled with black hair dye and mopey school pictures was all perfectly "normal". The prescribed deviance, for the prescribed "normal" person. Day in, day out, through medical appointments and social arrangements I insist "I'm normal, I'm normal, treat me like anyone else, I'm normal".
But that isn't the truth, is it?
As I lay in the bath today, thinking about the stark reality of what faces me, I felt a small surge of rage. I didn't get what I wanted through childhood or my teenage years (by god, my childhood or teens weren't easy for any poor soul involved in it; as my Mother reminds me raising my brothers was a breeze but I was terrible), and I was sure my adult life would be my time to shine. Things would be different. I'd be free. I'd get what I wanted from life. I've maintained that. One day I'll feel better. One day things will be different.
But laid there, soap suds forming on my ever increasing stomach, it all came crashing down. The jenga tower had been balancing precariously on one remaining brick. That little brick separated my life now, from what I hoped it would be. Well done, little brick. You held out well, and now, your wobbling tower of hopes, dreams, aspirations has come crashing down.
That little rage engulfed me for all of a second. I felt jilted for another microsecond, then rage and righteous indignation gave way to empty space. The bubbles forming on my tumultuous belly suddenly dropped straight through me, a hole opening up in my stomach and chest. A scene straight out of "death becomes her" and the world slipped right through me. That is life, now. I'm not a solid object of permanence, not something that has any effect, I'm nothing special in the great or even small scheme of things. That I've known for a long time, but now, now I know that is how it will always be.
I've never understood how people get "angry" when they are unwell. Like life "owed" them something other than what they got. Then again, I have the luxury of my life span only being slightly shorter than the average persons, and that is through no fault of my disability; but through my own choice. With so few pleasures remaining in my existence, anyone who dares tear me from my cupcakes, caffiene, or nicotine does so at their own peril.
Perhaps if, two days ago, leaving the doctors surgery in tears I'd just been told I had but a few years (months, days...) to live I'd have a reason to be angry. But that's not how it went. I swiftly departed my GP's surgery after a particularly heartbreaking appointment, with the apoplectic and terribly dramatic words of; "I know this isn't going to kill me, I wouldn't be so lucky" and just about stumbled to my car before bursting into fits of tears in a very public car park. How melodramatic.
Throughout my childhood, and my adult life I took a few things for granted. I thought I would grow up, I would ace my exams, go to University, have a successful career, marry, buy a home, adopt a child or two. You know, the normal things. As it happened, I didn't ace my exams. I dropped out of high school, dropped out of college twice, and finally dropped out of University.Serial quitter. But that was ok, there was still hope - I could work any job provided it paid me a living wage. After all, life was to be lived, not to be worked, my profession was irrelevant. I'd still meet someone, one day marry, get my little home, adopt, have (and share) my stability. Be normal. That's all I'd ever wanted, to be "normal".
But I won't be. I will never be. The things I took for granted as happening in my life to see me through the tough days that inevitably come as you grow old (loss, heartbreak, illness) will not come. The buck stops here. As my Mother often reminds me, my parents "won't be around forever". Outside of that, friends come and go, and there will be no great tale of love for my life. I'm not normal. Normal things happen to me. I look normal, I sound normal, hell, I may even act normal, but in reality I'm anything but "normal".
Even now I shudder to write the words. I think of all the reactions. The "ohhh you aren't! Things will be ok!" or the "Drama queen, she's totally fine...". But, I'm disabled. There. It's out. Revelation 15:15 "And thus he said; "Well, obviously."
I won't get my little van with which to travel the world. The world isn't accessible and a power wheelchair would take up far too much trunk space. I won't have my little off-grid house on a plot of land with some chooks, pigs, maybe the odd goat and my dogs. I'll never be able to afford it. I won't have the careers I've so longed and lusted after, it's taken me 4 fucking days to recover from my last bath. I won't have that glorious fairy-tale wedding where I get to celebrate my joy with friends and family alike, I barely have anyone I'd invite. My side of the field would be all but empty. Besides, 42% of marriages end in divorce anyway. I won't ever find a "life partner", forget that I have nothing to offer besides my ever failing wit - I don't like to share a bed. I won't adopt and impart my wisdom upon a young soul who just needs love, my wisdom consists entirely of "Life's a not fair and it'll fuck you at every turn - keep a knife".
Here is where it all comes to an end. I am alone. I will be alone. There will be no one I can rely on forever. No parent who never dies. No lover who sticks with me through thick and thin. No dog who can live longer than 20 years. No video game that can keep me entertained for more than 10 minutes (until Fallout 4, anyway). And now what? There's nothing coming. I'm not going to be able to afford to go study (if my health even permitted it), and even if I did, the likelihood of me getting work is slim. I've no discernible talent on which to ride the coat-tails of. Things. Aren't. Going. To. Change.
This is it.
The actors have taken their final bow, the curtain has dropped, the milling of people as they go about their lives continues, and this; this is all that remains.
Now what? Will I ever have a home to call my own that has a bath? Will I ever have a back garden and perhaps a little tree? What will I have? How will I have it? My credit rating is appalling enough to shut down experian from shock and revulsion. I love having my dogs too much to do anything fanciful such as throw a brick at the Prime Minister. What are my options?
At this point, all I can say is, thank fuck for books and the privilege my literacy affords me else I swear I'd go entirely mad.
"In a mad world, only the mad are sane"
- Akira Kurosawa