Is it better to burn out than to fade away? For me this question becomes ever more poignant as my experience with Sarcoidosis grows ever more familiar. From a short term perspective, I have no doubt that my symptoms increase in intensity the more active I am. The more I do, the worse I feel. From a longer term perspective, I’ve come to realize that I’m not going to live a long life by today’s standards (or family standards for that matter). I’m not suggesting I’m going to drop dead tomorrow, but let’s be honest, the odds of me living the average lifespan for a male in Canada is next to nil, never mind me pushing the century mark. We all can’t live forever or even close to it.
Is Existence Reward Enough?
That’s the wonderful thing about statistics; for every person that lives to 100, somebody has to die at 60. And having family members living long lives like sea turtles left, right, and centre, it was only a matter of time before one of us had to be the anomaly that keeps the statistics valid. Someone had to take one for the team and I’m the one that unknowingly chose the genetic short straw (note to family members, I’ll be expecting extra special Christmas presents this year and it wouldn’t hurt you to reinitiate birthday gift giving as well).
And so I’m left to wonder, is existence reward enough? If illness has all but assured that the length of my life is irreparably shortened and more activity seemingly shortens it still, do I chose to “burn out” or “fade away”? Do I live as dull a life feasible hoping to scrape out every extra day possible? Is duration, despite dullness my goal? Or do I just give’er and ‘live hard, die young’ as the saying goes?
At first, the former seems the way to go. For one thing, it’s easier. I’m good at laziness. I don’t like it particularly, certainly not for long periods of time, but I have the skill set to achieve it. Doing nothing is something I can do. In fact, I’m bold enough to say I can excel at it. Fading away just might be my calling.
The latter, however, is something both new and intriguing. How, exactly, would someone like me go about burning out? The possibilities are captivating. I’m no different than most of you. I too wonder just how much chocolate I can eat in one sitting. And I’m not talking how much until I’m full, no I’m talking about how much chocolate can I ingest before I induce a full scale diabetic shock! Would it take more or fewer Double Fudgeeos than macaroons and rosebuds? Would pudding be different since it is not a solid form of chocolate? Or cake icing for that matter. What if I ate chocolate exclusively?
What about pastries? Cookies and squares and pie and donuts are delicious too. Coconut cream pie based with Nanaimo bars and vanilla fudge, topped with Neapolitan squares and whipped cream, and covered with maple syrup! I could try that because it wouldn’t matter. Who wouldn’t want to see me try that? Sell tickets. Get me on ESPN 6. Come up with your own concoctions. Test me, I’m game. Let’s settle this once and for all; am I the sweetest tooth the species has ever known?!
I could eat Cheez Whiz again but with even greater vigour than as a child. This could prove dangerous, though, if the goal is to ‘burn out’. One longstanding theory of mine as to how I contracted Sarcoidosis is that it started when I stopped eating this Cheez Whiz. Who knows, the Sarcoidosis might disappear should I eat it once again. I could possibly get an official endorsement from Kraft. Maybe get my face on the jar with a Sarc Free logo. How much Cheez Whiz would I have to eat before I actually turned orange? And if I did turn orange, I could tattoo a Confederate flag on my back and officially change my name to General Lee!
If only I had a rich relative that wished to live a long, long time. I could become their personal Portrait of Dorian Gray. For a monthly stipend of say, $10,000 I would promise to do my damnedest to burn out thereby allowing me to succumb to the worst Sarcoidosis has to offer, sooner. They, in turn, would benefit from actuarial statistics and find themselves living longer and longer. I’d certainly be open to competing offers. My Sarcoid-portrait skills are easily transferrable. If another relative wanted to pay say $15,000 or $20,000 a month or offered a 45 gallon drum of Smarties each month as encouragement, well, I’d happily switch allegiance. It’s all about taking a negative and making it a positive. If only it weren’t so much effort. Perhaps I should compromise and relegate myself to a sedentary life hooked up to corn syrup IV?
So I’m seeing a shrink. Okay, I counted 37 ‘about times’, 19 ‘too lates’, 11 ‘nods of agreement’, 8 ‘stares of disbelief’, 4 additional ‘stares of abject fear’ and 2 ‘his nose still looks the same to mes’. Don’t be too smug all you ‘about timers’ and ‘too laters’, the good doctor assures me it’s almost entirely the result of stuff you did! I hope you don’t mind my passing along contact details? But in all seriousness, I am. It would seem I’m not happy enough or happy at all, according to some. Lacking in the happy department definitely seems to be the consensus and this will not do. I guess I am at serious risk of not fulfilling my potential to be the noble centerpiece of a CBC made for TV special. The world doesn’t want unhappy sick people moping around. It’s not the Disney way. Think of the economic catastrophe awaiting the plastic coloured bracelet industry if chronically ill people didn’t go about inspiring the masses?
The Wile E. Coyote Sarcoidosis Mobile
Now granted I don’t have limbs missing nor are mine in jeopardy of falling off. I’m not horribly disfigured or suffering from an imminently deadly illness. I don’t even have a sexy, well-known or feared disease. I get that. I suppose I may come across as a bit pathetic right now, but pathetic is how I feel. I really don’t know what I’m supposed to do to inspire Canadians. The “insert feat here” across Canada has been done to death. I have a lung ailment; am I to breathe my way across Canada? Would it be inspiring if I mounted a chair on a large skateboard with a small sail on the front that I blew into to move the whole contraption? The Wile E. Coyote Sarcoidosis Mobile?
Of course the chair would have to recline so that my back pain doesn’t inflame. This would significantly impede the efficiency of the sail adding dramatically to the duration of my cross Canada jaunt. But, if I started on the West Coast instead of the East Coast like everyone else does, I’d only have to blow my way to the top of Rogers Pass and could just coast downhill the rest of the way. Of course, if I did that some smarmy Cystic Fibrosis sufferer would call me a fraud and blow his way from East to West. Then he or she would end up with their name on hospital oxygen tanks instead of me. And that’s all assuming several Lung Transplant Gang members don’t attack me somewhere in Saskatchewan and toss me into a potash tailings pond.
And if just being happy is enough, no inspiring required, it’s still awfully difficult being something I’m not. It’s not easy pretending nothing is wrong; to fake contentment with my life. Every moment of every day I’m afraid that what I do next will send my Sarcoidosis careening down a life-threatening path of no return. My mind has a hard time being happy when my body feels like varying degrees of crap every day. I am so weary of seeing doctors and physiotherapists none of whom have been able to make any of my ailments better. I question every decision I make to the point I have become frozen with indecision and frustration. Every interaction with another human being sends my emotions flying around like a vomit-inducing roller coaster. I agonize at how I bore my kids. In my heart I don’t want to continue this way, but my mind doesn’t know how to fix it. It’s too exhausted just tolerating the day to find ways to keep my shit together and be happy. There really should be a pill that just makes people happy. Or maybe there is a naturally occurring drug that would do the trick (nudge, nudge, wink, wink)?
This was edited April 2014 from its original first published as part of my April 2011 letter.