I’ve never thought of myself as any great beauty. I can’t even go for the “ruggedly handsome” look. Yet there was a day in 1996 when the title of a beauty queen was kind of thrust upon me. It’s an odd story that involves the combination of my lifelong disability, my eternal willingness as a book author to hype my work, and some very nice folks that wanted me to help do some good in their community.
Let me set the medical stage. I was born with a congenital birth defect called spina bifida. Kids with spina bifida are born with something wrong at the lower end of their spinal cord. Sometimes the deformation is so mild that the patient has essentially normal function, and may never find out about their spina bifida until they get a x-ray later in life. In moderate cases, which is where I fall, there could be a bump under the skin at the bottom of the spinal cord. This bump is usually made up of fatty tissue, and often snags and holds the spinal cord in place (which is why it’s sometimes called tethered cord syndrome). The doctors knew I had spina bifida because of that bump right above my butt (surgically removed when I was 9 months old; before the advent of CT or MRI, so they were practically working blind), and I also had some ancillary problems, such as a club foot and some neurological defects. I had a bunch of corrective surgeries throughout childhood, and something medically awful happens to me around every ten years. It’s had nothing to do with my current cancer, though. Still, I was in relatively good shape, because kids with more severe spina bifida are born with their spinal cords hanging outside their body in a little sac. They are usually paralyzed from the waist down and therefore live out their (often considerably shortened) lives in wheelchairs. I was born in 1956, and very few people who were born with spina bifida in my age cohort are still alive. In contrast, my spina bifida was mostly under control in 1996; I was completely ambulatory (didn’t even use a cane) and people who met me generally had no idea I had a disability.
So one fine day in 1996 I got a call out of the blue from a very nice gentleman who was working for the Spina Bifida Association of Kentucky. At the time, I had written a few books, and I was a Contributing Editor at Macworld magazine. I was certainly no celebrity, but I fit the criteria he was looking for, which was basically Spina Bifida Folks Who Have Made Good. He asked if I would be willing to come to Paducah, Kentucky to take part in a spina bifida awareness event they were having. They would pick up transportation and lodging, I could bring a case of books to sell at a get-together with other folks from the community, and a local computer store wanted me to give a talk about the Macintosh. It looked like a fine two-day trip. They was no pay, but I figured it would be fun just to do. Travel arrangements were made and I flew into Paducah on one of those little prop planes. My hosts met me, and then we were off to the B&B where they had secured a room for me to stay. As we were driving there, I chatted up my host and mentioned that there certainly seemed to be a lot of churches, given the town’s size. He told me that there were probably more churches in town than in any other in Kentucky, and depending on the church you belonged to, it would make a major difference in the prosperity of your business. I thought how different that was from Southern California, but held my tongue otherwise.
The next day was the event, and we started out at the computer store where I had a talk about Macintoshes ready to go, which I delivered to about 30 people. I noticed something a little odd; all of my hosts were unfailingly polite, but there was something a little off in the way they were treating me. I finally figured it out: because I had spina bifida, they had expected me to show up in a wheelchair. Well, I couldn’t be responsible for their expectations so we continued on to the event.
There I was sat down at a table where I had a chance to talk to several younger people with spina bifida, and we had some good talks about how it was possible to make your way in the world even though you had a disability. I think I was able to help them with my perspective as an adult, even though I wasn’t in a wheelchair.
My table mate was the lovely and talented Miss Kentucky, Veronica Marie Duke. It was kind of cool to see how she did autographs; she had a pad of photographs with her picture which she would sign, tear off the top sheet, and hand it to her adoring fan. The little girls, in particular, were knocked out by that crown. I chatted a little bit with her, but she was mostly strictly business.
But here’s the thing that I liked the most about the whole trip: the sign on the front of the table we were sitting at. I have the original in a box somewhere, but I’ve mocked up this exact replica.
Thanks to whoever was knocking out those signs for writing them that way.
And on the flight home, as the plane banked away from Paducah I realized something: I felt pretty.