“there are also those of us who don’t have the time or the energy to be strong, brave, or good-looking. And we certainly are not well off! We spend all our time and resources just trying to manage our symptoms.”
With those words I made my complaint, 15 years ago.
It hasn’t been a great 15 years.
And that’s got fuckall to do with ms.
Yet I can’t help wondering, “what would I say to me, 15 years ago that would reflect how it’s been?”
It’s a heck of a question; one I wouldn’t normally have a chance to ask and answer – but because the article was published by an online journal, there I am – 15 years ago.
It was a different time, then.
The Twin Towers’ flames still charred our collective memory; Karen and my emotions were still raw from my first, massive attack of Multiple Sclerosis – leaving me a wheelchair bound invalid, months of treatment were followed by learning how to drink coffee from a straw, professional homecare organized, doctors, therapists, our hopes finally cautiously optimistic and I wrote that article.
So what would I want me to know? Or what would I have liked to know?
As I think back, I reflect that at that time, 15 years ago I’m fortunate to be unaware of – NOT so much what MS will bring… but what life has brought.
I knew MS was kicking the shit out of me and expected the worst. But I didn’t know how much life would hurt; how hard it would be.
MS sucks, but life sucks worse.
For example, I wouldn’t necessarily tell me how heartbroken I was when Karen died, though I’d want to know she died.
My LBF, “Lover and Best Friend” was gone. Everything we had hoped, shared, and planned was gone.
Tell me she’ll pass, but no need to say how desolate and lost I was…
Don’t tell me I was shocked, stunned, paralyzed. The empty darkness of deep, profound, primal sorrow in slow motion consumed me for weeks, then months.
But I would want me to know that though she passed and though she never saw me get out of that wheelchair, I did get out of it.
You see, shortly after she was gone I pushed that damned chair out of the way and made it to the toilet – first by crawling on the floor, then by doing the “wall crawl”.
Tired of bruising my knuckles on the bedroom and then bathroom door frames as I wheeled my chair through them – desperate to reach the toilet – failing time after time – I gave up and crawled.
The wallcrawl, that is.
I got out of the chair by getting out of the chair, and crawling along the floor, then along the wall, until I was strong enough to no longer need the chair.
She’d have been happy for me! So happy… There’s so much we would have celebrated.
She never saw me stand (yes, “stand”) in my back yard and howl at the moon in pure delight as my winter solstice fire burned down to glowing embers.
She never saw the first time I danced again after years; and though she didn’t see me fall in love again (twice) she’d have been happy for me.
She would have laughed at my antics – dancing in the snowstorms and my bonfires to the equinox’s. Karen and I fell in love on the dance floor…
And though she would have celebrated with me, there are some things I’m glad she missed.
She didn’t see my mom die.
Or my neice die.
Or John, my best friend, die.
Or my son go to prison, or Don, our best man disappear – probably dead in East Hastings.
And she didn’t see my final foibles.
Drug use became my refuge as I lost everything to the financial burden I bore to help fix the house, so I could live in it after my health failed, as we knew it would.
She would have understood, though. She wouldn’t have judged me or kicked me to the curb like so many did during the darkest days.
Yes, though I miss her terribly, I’m glad she missed the worst parts of my MS;
For during the hell that can be life, I suffered the hidden parts of Multiple Sclerosis, the invisible horrors, the burning up and down my spine, the consistent, searing hot poker jabs that interfered with my sleep, the resulting depression as night after night I lie awake, the psychotic episodes, the drugs – some prescribed, most not – in an endless, insane, useless attempt TO STOP THE PAIN, to beat the fatigue, the UTIs, the ever-present mental and emotional confusion, finally the suicide attempt, the horror of the “pit” – institutionalization.
Karen would have cared while others would or could not. She’d have laughed my laughs with me, cried my tears with me, screamed my screams with me, held me when the night terrors came…
She cared, and she’s gone. John cared, and he’s gone. Don cared, and he’s gone.
So much loss.
I am alone, and while MS took away from me my identity – that young, over-achiever, jock, power driven lawyer, life stripped away what was left.
And MS doesn’t care; it sits quietly in the corner. Watching. Waiting.
It continues to ebb and flow, like the tide. In and out. Up and down.
Every year, as the warm season changes to the cold of winter, I have an “episode”. This happens without failure. I’m going “down” and there are only two questions I have to answer – how bad and how long?
Oh, yeah. And how much better will I get when it’s done this time?
If I could, I would tell me that simple fact, because it’s the ONLY thing that I can rely on.
“Dennis”, I’d say, “you are going to get sick every year as the weather gets cold.”
Really, really, sick.
“But don’t worry,” I’d continue, “if you use that stubborn, catancerous, obstinate nature you’ve been blessed and cursed with, and the anger – use it – you’ll be fine.”
Yeah. Don’t worry. You’ll be fine.
Don’t worry. You’ll be fine.
Unless, of course, you’re not.
Uncertainty. So much uncertainty. No one knows how long she has. But usually we know we’ll be ok. Sort of.
But people with MS don’t know if they’ll be ok.
We just don’t fucking know.
If I could, I’d tell that young man, torn down from the peak of his strength and youth, frightened by the infuriating unknowable, that after everything I’ve been through and lost, I can still say:
When my tide goes out for the last time, I’ll be alone, as we all are. Maybe I’ll be more ready than those who’ve lost little. I don’t know.
Alone though I’ll be, I wish to die well – knowing I fought MS until I could fight it no longer.
And if there’s one thing I could leave, it is this message, to any who might chance to view my epitaph:
“I died free.”
Three tiny words that sum up everything I’ve hoped for. Worked for. Fought for.
Karen would have liked that.
And to my disease?
“Fuck you, MS”.
Karen would have liked that too.
Dennis KG Robinson (Fletcher)