Disability is a word. 10 little letters which make up a word in the English language that carries with it the weight of the entire world. It can mean a lot of things to a lot of people. To some it looks like a person in a wheelchair who relies on machines or some sort of mechanical means to get around, or even live. To others it means a mobility issue which prevents them from doing some things, but still allows them to do most of the things they enjoy. To others it’s a scary word since they have no idea what’s going to come next.
To me, the word disability is not a noun, it’s a verb. Instead of simply being something that defines a state, it defines an action. Like a long path which plunges into a forest so thick and dark you can’t see the end of the path at all. You have no idea if danger lurks on either side of the pathway, or if you have navigated past the worst of it.
I’m very fortunate in my situation. My day job is one that allows me to take time off when I need it. Days like today, for example, when the pain of fibromyalgia (if that’s truly what I have) is too much and the struggle to appear to feel well overwhelms. My job allows me to function without having to do things like lift heavy objects, work in the hot sun, or any other physically demanding effort which may be too much for me.
Like I said, I’m very fortunate. There are many out there who suffer and can’t do what I can. There are those which have it far worse than I do, but I’m also relatively early in my journey. That path through the forest is still very long, and the furthest point that I can see is still very dark.
The biggest problem with fibromyalgia is that on the outside, everything looks fine. Unless you are having a very bad day where you need a walker or a cane, from outward appearances everything looks fine. You can imagine my shock the last time I went to a doctor’s office and, having my x-rays taken, when the doctor told me that my joints were fine. I wasn’t expecting that. My joints had been killing me for two months straight.
That was when the word fibromyalgia was spoken. I must admit, there was a part of me that was prepared to hear it. It’s not necessarily that I wanted to be diagnosed as much as I wanted a diagnosis. Being surrounded by pain in the joints and muscles is bad enough, but it’s worse when you don’t know what’s causing it. Truth be told, we still don’t know what causes fibromyalgia, it’s just a thing. That’s the difficulty of it all, at the end of the day it’s only a thing.
A while ago I was at a convention selling books. It just so happened that there was a tarot card reader there. I’m not a big believer in tarot card readers, but we struck up an interesting conversation because I thought that her advertising was great. During our conversation I said, “You know what, why don’t you do a reading for me?” She told me something that I have to admit I wasn’t prepared hear. She said, “Soon a question would be resolved in my life. And that answer would lead to making some hard choices.” She also said that eventually I’d learn to live with those answers. I would find my new sense of normal.
Like I said, I’m not a big believer in tarot card readers. But her words cut deep. To be clear, I hadn’t told her about any of my ongoing health issues. She only said to think upon the reason that she was doing a reading for me. In essence, what situation in my life would I like more answers on. I thought about my health issues.
I bring this up only because shortly after that I was talking with a therapist. I was discussing my health issues with him. And he said that I would need to find a new sense of what is normal. He said that I would have to learn to accept whatever’s going on in my life and make some hard choices about how to accept my situation.
I shared with him my experience with the tarot card reader. He laughed and said, that’s ironic.
There still a ton of questions out there. I’m going to need to figure out the best way to answer those questions. It occurred to me that I’m trying to answer all the questions all at once. I need to learn answer the questions as they come. Take them on, one at a time. And ultimately do something I am not good at. I have to learn to forgive myself.
What about my writing? Well right now I’m not typing, I’m dictating. It works well for the most part, and it saves my finger joints for the important tasks like opening beer. No matter what comes next, I will continue on my creative journey.
-Yours Truly,
Having a Ball! by Misty Simon
