KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
According to the U.S. government, I became disabled in Dec. of 2010. The truth is that it snuck up on me, and while I stayed largely in denial about it, I gradually lost the ability to work and do most of the things that I took for granted. I'd like to briefly tell my tale and relate a few things I've learned as a result.
I started working in the '70's, and did a variety of things. I was an electronics technician through the 1980's, first in the military and later in the aerospace industry. After playing music full time from 1990 to 1995, I started working in big industrial wood shops.
I enjoyed learning about the tools, and it really felt good to do physical labor again after being at an electronics bench or behind a guitar for so long. I learned AutoCad and how to program computerized woodworking machinery, but other than a few brief stints at desk jobs I largely worked on a shop floor. I preferred interacting with the crew, and running machines, loading and unloading trucks, and being a general problem solver in a manufacturing setting. I enjoyed it, but it turned out that my joints didn't like it at all.
I had a glimpse into my future in 1997 when trouble with my right knee sent me to an orthopedist. He puzzled me by asking me where I had played football-not a good sign. There were signs of arthritis, and serious trouble with my right ACL. At that point I was able to get by with a draining and a steroid shot.
After a plant shutdown and a two-year stint in school I went back to work at a store fixture plant operating a panel saw. By then I was starting to have trouble with my left foot. I later found out that this was the beginning of plantar fibromatosis, a fibrous growth on the bottom of my arch. My knees and foot got gradually worse, and I had to be extra careful getting on and off of forklifts or crawling under equipment. Each winter I felt a little more pain and took a little more over-the-counter medication. I was working harder and getting less done, and really not thinking about it too far ahead. I tried to keep bicycling, but by the time I was laid off in late 2008 that was too painful. Toward the tail end of my insurance coverage I went back to an orthopedist who just looked at me and said,"Dude-your knees are fucked up." He couldn't believe I'd been working like that. He said I had the knees of a seventy-year-old man. I was forty-seven.
Like I said-it snuck up on me.
Three years later, I'm using a cane and can walk only with great difficulty. I'm a little worried about what this winter's going to bring: If the current cool, damp weather is any indication, it won't be pretty. Playing the guitar in public is virtually over. Even with extensive help setting up it's very painful. In my early forties I used to joke with my middle-aged bar band friends about how instead of sitting in the parking lot getting high on breaks we were now comparing pain meds. Those jokes aren't as funny as they used to be!
I have got an awful lot to be thankful for. My children were all grown and independent by the time my troubles really kicked in. If I'd had young kids at home, I'm not sure what I'd have done. I also had several friends who had been through the process of applying for and eventually receiving disability payments, and they gladly talked me through the whole thing. That was a huge help. Asking for help when I need it, any kind of help, has not been an easy thing to learn. I've got some incredible family and friends, and I don't know what I'd do without them.
Another thing I've learned about is pain. I always knew, intellectually and through experience with injuries, that pain was bad. Everyone knows that. What I didn't know was how chronic pain can effect your personality and mess up your concentration, and I didn't yet understand the fear that what I was feeling that day might be as good as it ever gets. It also took me a while to understand how fear and depression can manifest itself in irritability and anger.
My disability isn't readily apparent to people unless they spend time with me or watch me try to walk. Even then many people don't get it because they haven't been there. I had a young acquaintance at a musical event tell me we really had to "get me exercising". This kid hasn't yet had a physical issue that couldn't be cured with two aspirin, and I hope it stays that way for a long time. He can't tell what's going on by looking at me. When I'm driving and see all these people panhandling I think about what their stories are and what's happened to me, and know that if I hadn't had so much good fortune in my life I'd be right out there with them. I was always a soft touch, but now I rarely drive through town without scaring up a dollar for someone.
That's part of my story. Reading back, it seems too much like a laundry list of complaints-which is not really how I meant it. Believe me, when I hear other people's stories I realize that I've got it pretty good. I'll be eligible for Medicare in a few years, and have a possibility of getting my knees replaced. I don't know exactly how it's going to happen, but it's a plan, and I like having a plan.
Good luck and good health to everyone.
3:19 PM PT: Rec list? With so much important news today, too! I've been on the Occupy live feed all afternoon.
Thanks to everyone for the good will and the suggestions.