I discovered that another fellow in his Thirties with Duchenne muscular dystrophy passed away. Fuck. What more can I say?
He was an acquaintance of mine. His father and sister asked me to encourage him to get himself out there, and just when he came out of his shell… gone. This disease keeps taking and taking, and one day, without warning, you don’t even have the luxury of final words.
Everyone thinks that outliving the rest is a privilege, this battle against all odds. It scares me, the notion of becoming the oldest living when most of the time, this doesn’t seem lifelike anymore. I feel guilty every time a small child dies, the alter ego of the original, “Why me?”
Nothing gets better. Vacations don’t exist. The fight is never-ending. Its bombardment continues until it breaks your will. Then it slowly kills you.
And it looks like I won’t be going on national television after all. I still haven’t gotten the invitation call from Dragons’ Den and it’s already way past six weeks since my audition. I remember having a terrible night prior, only getting an hour or two of sleep. I was so exhausted that morning and had such low blood pressure, I nearly passed out in the bathroom. Then, the power went out all of the sudden! I thought I wouldn’t make it while losing so much time with all the unforeseen issues.
On the way to the hotel, Dad received a call from my nurse, Wilma, saying that the building wasn’t wheelchair accessible. What in the world? This is 2015! However, thanks to her and Kristyn, one of the producers was so gracious that she actually came out and into the van to interview me. She seemed very surprised to see me, in a wheelchair and on ventilation, and how I had the courage to put myself in the spotlight.
“Are you sure you can handle the Dragons?” she asked.
It was quite overdue, but the next day, I finally allowed myself to be admitted to emergency. Some may think me foolish for working myself so hard, but I endured because I needed to bring awareness to the world. Being an inspiration (as they so love to label me) is tough. Regardless of how difficult the hand you’ve been dealt with is, there are no shortcuts and you still must work for your rewards.
I want help to release my autobiography, but don’t know if I possess the capacity to do it on my own, considering my health. I’m exhausted all the time. I just know I never asked for support when I started losing my walk and it’ll always be that way.
Perhaps my proposal of $0.00 for 51% of my company sounded ridiculous, but I don’t care about making money for myself. Whatever I earn, I’m donating it to research anyway. Ten year old boys are dying. It makes me wonder if I lived for so long for a reason, though without assistance, I feel utterly trapped.
So here I am; square one, again. My cousin, Daniel, who, until recently, came over every week to play video games with me, left on Sunday for his new career in another province. I suppose it might sound silly, but being able to relive my younger years makes me feel so free that I forget all the daily stresses.
The other week, he told Dad how supportive I was being. It made me laugh because what was I going to do? Ask him to stay so we could shoot bad guys on the computer? No. His livelihood is his alone. I’ve had much chest pain lately, but I decided not to care when it came to his farewell dinner last Thursday. I had to leave the house for him.
It’s always some sort of tragedy though, whenever I look into the closet mirror. I noticed how thin my neck had become on that same day and realized how much I looked like those dead children in their end-stage photos. I’m sure I’ve gained some weight over the past while, but at my worst, my distended stomach resulting from the lack of muscles was gone. When I had a shower, I felt so tiny. I felt a huge amount of water, draining down the massive cavity in my abdomen. I felt prepubescent, anorexic… alien. I didn’t look human.
I’m tired of the perpetual losing of things that belong to me. First, it was my legs, then, my arms. Eating, breathing, sleeping, heart function, all kaput. Now, I can’t even have a little mindless fun? I suppose it’s time to grow up and wake up because all that remains of me is one finger.
This one finger has made me into a published author, selling out at the largest book store chain in Canada, given me the privilege of expressing myself without boundaries, and allowed me the honour of giving back to those looking for encouragement. I’m even able to make women feel good about themselves, so they say! I mean that’s pretty awesome.
No. I’m not afraid of DMD and what it’s doing to me. I refuse to let it deny the things I love most, despite other stolen items. I’ll face the world, fearlessly because if one finger is capable of making a mark in the world, limitations are nothing in comparison. That, is the silver lining, amid seemingly impossible circumstances.