From the department of silver linings
by Jeff Gibler, Humble, Texas
When I was a kid we would come to the United States during the summer to visit my paternal grandparents in Houston. It was also when we got to do our annual visits to the dentist, and I, having been born cross-eyed and undergone three eye surgeries, got to see the eye doctor.
Invariably, before going back home to Venezuela, my mother took us clothes shopping at the big mall for the coming school year. Along with my new shirts and jeans (jeans that never seemed to be long enough to last through the year without me getting teased about puddle jumping) and socks and underwear, if I was lucky, there would be a new pair of cowboy boots. After all, my dad was from Houston, he grew up on a ranch in Mexico, and we were visiting Texas. It just seemed natural that I would go home with a new pair of cowboy boots. And I loved my boots!
I was diagnosed with FSH muscular dystrophy in 1994, just before my 34th birthday. It was a little ironic. I had had symptoms all my life without a diagnosis, but that was not why I went to the doctor this time. I had a pinched nerve in my wrist that was causing me occasional sharp pain, which forced me to drop anything that I might have in my hand when the pain occurred.
Needless to say, after spilling a couple of cups of hot coffee in my lap, I decided to go to the doctor. I did mention to the doctor that I was concerned that there were certain tasks at my job as an airplane mechanic that seemed to be getting difficult for me to perform. I had always had problems raising my arms above my head, but now it felt like my upper body strength was rapidly deteriorating, and I’ll be darned if the doc didn’t say that she wanted to refer me for some tests because she thought I might have muscular dystrophy. They did the tests, and the rest is history.
I think it was around 1999 or so that my doctor told me I would have to start wearing an AFO (ankle-foot orthosis) on my right foot. The AFO goes inside the shoe. My foot-drop had become bad enough that if I was not paying close attention when walking (you know, like chewing gum and walking at the same time) I would often stub my toe on the ground and trip over myself. I had fallen and hurt myself several times.
The first AFO I got was custom made. It was molded to my foot and calf, and had a Velcro strap that wrapped around my leg. It was plastic and rigid and big. It fit under my foot and went up the back of my leg. It kept my foot from dropping. Did I mention the AFO goes inside the shoe? It did not fit in my boot! Eventually, I started wearing an AFO on my left foot, too. Although the new AFOs were better, smaller, and lighter carbon fiber ones, they still went inside the shoe. And they still did not fit in a boot!
When I first began wearing the AFOs, I would occasionally forgo them and wear my boots. However, it has been more than 17 years since I wore boots. I gave away my last pair to a man from Canada in 2005. He was visiting Houston and said that he wanted to buy a pair of “real” Texas cowboy boots before he went back to Canada. I told him that I just happened to have a practically brand-new pair that I had barely broken in. They had been sitting in my closet for several years. He was happy to have them.
When I was diagnosed with FSHD in 1994, I was terrified by the thought that I might have to use a wheelchair someday. But it also happened that I knew a little girl with cerebral palsy who was in a wheelchair. Courtney always made me smile when I saw her. She always made everyone who saw her smile. So that terror was fleeting.
It occurred to me that if I did end up in a wheelchair, if I could make just one person smile the way Courtney made me smile, I would be okay. That’s not to say that I welcomed the idea of ending up in a wheelchair, but knowing Courtney made it so that I was no longer terrified by the thought.
The day did come. In May 2017, my doctor told me she wanted me to start using a wheelchair. It took me a little bit to get over the hurdle. I’d had several falls in the last year, and walking had become extremely difficult and precarious.
She wrote the prescription, and I got the chair in July. I made all kind of excuses for not using it. I would go places and not take it with me. I would tell myself that I wasn’t going too far. Then in August I fell in my driveway (yeah … not going too far!) and suffered a very bad concussion. I’ve been using the chair pretty consistently since then.
There is a bright side to all of this―to needing a wheelchair. I don’t have to worry about foot-drop and tripping over myself in the wheelchair! So I don’t need to wear the AFOs. Did I tell you the AFOs go inside the shoes? They don’t fit in boots. My wife took me to buy a new pair of boots today.