THE JOURNEY

From 1972-1984, my life was normal. Well, looking back now, there were signs, but I never noticed nor would I have acknowledged them. As a kid, no one wants to be different and when you realize that you are, due to a physical problem, even at age 11, you start to question the whole world. Why can’t I run like everyone else? Why do my calves feel like they’re on fire when I try to run? Why do I lose my balance when trying to climb on the playground? How come I am out of breath when I reach the top of a normal flight of stairs. Why did I “randomly” get chosen from my class to help some lady who showed up during 6th grade who told me she was a “PT”? What does that mean, and why is she sitting with me in a closet next to the gym making me stand on one leg, and asking me all kinds of questions? Does she know that I ache a lot? Can she see it?  Now somehow my parents suspect something. Three different doctor’s offices during that school year. Everyone, even an orthopedic specialist tells my parents (never me…I’m the one with the problem…talk with me) that I have flat feet, but nothing else is wrong. I KNOW something is wrong, something seriously wrong. I just didn’t grasp that having trouble running would someday lead me to several power wheelchairs, a few hospital stays, worrying about my weakened heart and damaged lungs, experience discrimination in my workplace, and in public, as well as spending tens of thousands of dollars out of my own pocket to simply attempt to live as the rest of the able-bodied adults do. I had no idea that women I dated did so because I was “funny, driven, and a great guy” but when things got serious, as in living together or marriage, excuses were made, but I knew that they had all they could take. Anyone that decides to spend time with me becomes a caretaker, and the vast majority of people can only mentally and physically handle it for a little while. The exception is my wonderful wife Vanessa. While I was drafted into the world of MD, Vanessa enlisted. We have our highs and lows like all married people, but our support for each other is unwavering and that is key. Here are a few things that you do each day that require almost no thought, but require full assistance for a 49-year old man living with LGMD:

While you are reading right now, you may have scratched your face, wiped your nose, or effortlessly raised a cup or glass to your mouth without even thinking about it. ALL of these simple acts to me require planning, preparation and assistance. I have lived like this for so long that my mind is sharp to solve problems all day long. They are in addition to all of the issues that come up for all of us: time to grocery shop, broken car, need new clothes, dog needs to go to the vet, kid has swim lessons, we should really get an estimate on the roof, could have a little tree work done in the yard. Those are all things that require research, thinking, planning, and finally action. Having a glass of water or feeding myself carries similar effort from me. I can’t open the fridge if I want a snack. (The door won’t open when a wheelchair is in front of it). I cannot flop on the couch and kick off my shoes after a rough day. I can’t just cruise through a drive-up window to get a coffee, and I certainly cannot pick up my young children to hug them, give piggybacks, or teach them how to play catch. 

Am I angry? You bet. Am I sad? Sure. Do I question why Muscular Dystrophy chose me? Everyday. Just like all of you: somedays the glass is half full, some days it is half empty and somedays I wish the glass was bigger. What I do understand is that I live in the best country on Earth. We have the most talent, the most resources, and some of the most progressive laws to help the disabled. None of it is enough. I can still breathe normally, but in the future, should my lungs fail, someone drills a hole in my throat and puts a tube in. This is the best we can do? For about 10 years growing up, I wore removable “night splints” that kept my ankles at 90 degrees while I slept. This would keep my hamstrings loose, the doctors said. They were made of fiberglass. They didn’t tell me that they would make my legs sweat. They didn’t tell me that I would develop sores on my ankles due to skin irritation so bad that I couldn’t sleep most of the time. These are the therapies and treatments for MD? Not good enough. From 1985, when I was diagnosed, until now, I have been told that better treatments and even a cure is “just on the horizon”, “coming into focus” or “around the corner”. Scientists have cured mice models engineered to have muscular dystrophy dozens of times, but when they go with bigger animals (bigger muscles)….not so much. Would I participate in a clinical trial with some experimental drug? Talk with me about risk/benefit. My body is already so broken; it would need to have a serious upside with almost no downside. I don’t care if I’ll never walk again, but stopping the progression would be enough.  Meanwhile, while I wait,  I can’t lift my arms to scratch my face, wipe my own butt or go most places by myself. Good thing I like being social! Forty years of muscular dystrophy is enough. I’m done. I was done thirty years ago, but here I sit. Today, like all days, I will continue to make the best of it, manage it, and therefore smile. It’s a trainwreck, but I’m still laughing.

Stay safe, stay awesome, and stay tuned.