My new husband and I built a small, one-story, handicapped-accessible house on the banks of Tibbee Creek. After my husband’s bout with Hodgkins-lymphoma and the subsequent package deal of chemotherapy and radiation, I decided to enlarge doors, have a wheelchair-accessible shower and open my floor plan up with big, beautiful arches between many of the rooms. We did not incorporate any steps going into the house. Might as well since we were building anyway. Since I have two healthcare degrees, I could take care of him if he really got down. Most folks don’t realize that people are forced into nursing homes due to something as simple as not being able to fit a wheelchair through the bathroom door.
This home is where my husband and I brought my first cousin, Adam, over for Thanksgiving dinner. Adam and I are the same age, but he lives in a nursing home that is only seven miles from my house. I feel a surprisingly heavy guilt that he has inherited Huntington’s disease from our grandfather and I did not. My side of the family dodged that bullet. My grandfather terrified me as a little girl and I dreaded seeing him because I was convinced that he was actually a living, breathing monster that would eat me. He smacked his lips and writhed uncontrollably and his arms and torso flailed about in a strange dance called chorea. His eyes darted back and forth. Just like Adam’s eyes do now, thirty years later. Only Adam is no monster. He is my blood. And I do not run from monsters anymore. Adam is also a double amputee. Talk about rotten luck, it’s no damn wonder he chain smokes every chance he gets.
When I went to pick him up on Thanksgiving Day, he was excited. He was waiting for me, ready to go, on the front porch of the nursing home He was easy to pick out in the lineup of patients because he was the only person flailing his torso and arms about and grimacing and blinking his eyes real fast. He could not stay still. I thought he might face plant himself on the concrete straight out of his chair. I was walking toward him when the thought suddenly struck me. How in the hell was I going to get a man with little arm control and no legs up into my SUV? I opened the passenger side door and stood there like an imbecile, wishing I had brought some back-up when he said loudly “Move. Just move!” I stepped aside and with that, Adam barreled straight up into the seat of my truck using his arms, trunk and residual legs in one fast motion. He literally exploded out of his wheelchair into my truck. He was as fast as a monkey! I stood there with my mouth wide open, as he sat there grinning like a kid with his too-long pant legs tied in a knot below this non-existent knees and his seatbelt on. “How about that,” he said. “Show off,” I replied.
On the way to my house, I stopped and bought him a pack of cigarettes. I fussed at him about smoking, just like he expected me to do, but my lips twitched despite myself. All that fussing was one gift that I could give him. I am really good at it and he really seemed to like it. During dinner, he opened our wheelchair –wide door and went outside to smoke so many times that I lost count. I fussed and asked him if he was trying to heat the whole neighborhood, kill himself by smoking, smell up my entire porch, et cetera, but inside I saw that he was happy. It made him happy to roll up to a dining room table again, get himself in and out of the house whenever he wanted and to smoke if and when he wanted to. I can see that he liked my ‘Aunt Bea’ style of fussiness. This fussing was good for him and was just what he needed. It was a small piece of normalcy. Precious stuff. He smoked eighteen cigarettes in four hours. Good for him.
