Lessons on Singing and Trakes

Ok, I'm going to spell trake wrong in this blog because the correct spelling does not look right. So if no one has any questions, we can continue.

Before my trake surgery a couple years back, I had the craziest question growing like a tumor on my brain -- will I still be able to sing after this?

Lets take a detour from the story for a moment for some backstory. I started writing and ocassionaly performing hip-hop lyrics at the age of seventeen. Part way through my softmore year at St. Andrew's in Laurinburg North Carolina, my lungs were getting weak, too weak. This meant, after a pneumonia and a hospital stay, that my out-of-State college career was over.

During this life-transition I made one of another kind. A transition from rap to rock. The band and I both noticed, the Summer leading up to the surgery, that it was getting harder and harder for me to belt out lyrics. Naturally horrified, I thought, with a trake that'll really be it! My singing days were surely numbered.

Or were they?

The recovery after the surgery was hell, taking all of three months of going in and out of the E.R., getting MERSA and a hole in the lining of each lung. I was told two weeks, ha, what a joke! I couldn't talk at first and having a cuffed trake didn't help either. Without explaining it in detail -- cuffed equals no sing, un-cuffed equals sing.

After re-learning how to talk and getting a cuffless trake, I must say that singing has become much easier. So after all the pain and hospital stays, I'd say getting a trake was the best decision I ever made! It saved my life and my voice.

Snapping Out of it

Today I get in my wheelchair and out of my coffin and/or bed -- or whatever sounds right for the moment. Constant bed rest is a big red-flag for anyone with DMD, so I need to to get out of my recent depression and up and moving. I've known other guys who have passed away, because either they didn't take care of themselves, or they just simply gave up -- I'm not that guy.

For me it's not a question of if, but how.

I'm not some power-speaker or advocate for "Jerry's Kids". On the contrary; I'm just an American man trying to live the best life I can, and I think Jerry Lewis is an insensitive ignoramus. (Mr. Lewis said that if people with muscular dystrophy didn't want to be pitied, they should stay inside.)

To me it was always a question of how I would have sex, for instance, not if I would. So when I got lucky for the first time, all I had to do was figure out the mechanics with my partner, of how the whole thing was going to work, and so began a beautiful part of my life. I find that pleasuring a woman orally is my strong suit, and I imagine the same goes for many disabled guys that can't get on top...nothing wrong with using your...um tongue, right?! You do a good job down there and she'll be more than happy to ride up top. With the other partner being able-bodied, all one has to do is figure out the right positions and maneuvers, and sex becomes very enjoyable for both parties.

Life with Duchenne is a challenge but it's very, very far from impossible.

I had thought several times that I'd found the one; sometimes for a good reason and sometimes out of a hopeless, romantic blindness. But the point is not that I didn't find my soul-mate, but that I actually bothered to look in the first place.