I type these words on a humid summer afternoon. I am sitting on a screen porch and there is a New England thunderstorm going on. The breeze has that organic smell of the earth and dirt, while the rain is soothing, putting me in a frame of mind to let my fingers run free in a stream of conscience that I am uncomfortable thinking about, let alone sharing.
On the whole, I write for myself, I write as a means of therapy and I write as a means to process what I am thinking and feeling. Every author says this and while it is true the exercise of writing helps me with a great many things, sometimes I need to throw up the hard stuff as well as the humor and my usual outlook of “golly gee, I’ve got this!”
For the past few days I have been down. Quite down. I’ve been feeling a heavier than usual weight of the cross that I have been given to bear. I’ve been again asking why has this all happened to me and how much worse is all of this going to get?
A month ago, while I was pretending to sleep on an airplane, I heard a woman two seats over ask my friend (who was in the middle seat next to me on the aisle) about my disease. He explained about how he travels to help me and how our friendship has endured and grown over thirty years and how he doesn’t see my health as a giant issue. Then the woman, after asking him if I was asleep, said “Yeah, but, is, he, like dying? Is it like quick? Is he going to be o.k.?”
My friend answered that the type of muscular dystrophy that I live with is very slow progressing and although I had gone through some rough waters, I was again doing fine.
I’m not even fucking close to doing fine. As I sat there, eyes closed with my head on my chest trying to nap, I thought, this whole thing sucks. All of it. Every second of it is a giant mess.
I hate not being able to do things on my own OR on my own timeline. Recently, my wife had no vehicle for a couple of days and told me that she didn’t like waiting around for me to drive her to run errands or have to schedule her interests around someone else’s schedule. Welcome to my world babe. Every hour of every day I can’t even piss when I feel like it. Sure I could wear a condom catheter and have a bag strapped to my leg, but part of living the way I try to is to feel NORMAL. Normal people go to the bathroom anytime they want. Normal people open the fridge, make a snack, stop for a coffee, open a door, or bend over to pick up a penny at any given time.
Nope. Foreign concept over here. I don’t even remember what it’s like to not have to plan my existence around others. That was another life. It sucks. Yes I have a great support system, and yes I have a wonderful life, and yes I am not lost on the fact that I have been able to do things that others living life in a chair cannot or have not.
That doesn’t make it suck any less.
Sometimes these feelings just creep up and knock me flat. Did you roll over in bed last night or find a comfortable position after fluffing your pillow or wrap yourself in a warm, fuzzy blanket on the couch today? By yourself? Not here.
How about being fed up with something or someone and taking a 15 minute break to walk the dog or walk yourself? Negative over here.
I joke with my wife that I will never become too fat because I am losing the ability to feed myself and/or reach any of the snacks in the house. It would be awesome to pick up a juicy apple and take a bite while standing at the window. You don’t even think about it.
I’m not writing to make you feel sorry or guilty. As I said, I write for me. In my minuscule corner of the ether that I yell into once a week over here, I have learned that other people read my words. That’s nice. People always tell me that the best part of my blog is that it sounds like me.
Here’s something that doesn’t sound like me: since 1985 I have had hope that I would live to see the end of my illness. It’s more likely that my illness will live to see the end of me.
Somedays, like today and right now, that fact really sucks.
Patrick moeschen 