My father had been dying for months. His mind, scuttled by advanced Alzheimer’s, had more left to it than his starved body. At times I feared I would also die of Alzheimer’s, because it ran in the family, and because I thought my epilepsy might make me more prone to that plundering of mind. Today or tomorrow would be the day, his last day, hospice assured me over the phone after a week of vigil. So, thirteen hundred miles distant, wheeling above an expansive early green spring, I flew from Maine to the compressed snows of a Wisconsin clinging to winter. Perhaps I could lay hold to something no child should have to touch upon – the moment at which one’s parent dies.
There has never been a disability-friendly American Pie, much less an accessible Annie Hall. I know on the long march to equality, we crips have bigger problems than being under-represented in sex comedies. Being left out of the actual mating dance of life is far more serious, but beyond the scope of this article. I think the fact that there hasn't been a sex comedy involving crips says something about our place in society as people the world does not think about unless they are forced to. Any thoughts about disabled life are generally either blurted by vulgar grandmas in comedies, or left in the Sensitive Indie Drama section where the renters are either people like me, starved for something we can halfway relate to, or other kinds of artistic hipsters who are proud of how much of looking at us they can "stand". But that doesn't mean I'm completely disappointed in some of the recent DVD offerings featuring characters with disabilities.
Just when it was that I started feeling dead, I don’t know. My sense of time has been altered by the Illness. But the confines of this familiar room, an irregular box which constitutes my whole apartment and my only sanctuary, are starting to take on the colorations of a sort of peaceful death chamber, or a maybe a way station to another level, perhaps because of how I feel inside it.
I lie in a small, headboard-less bed adorned in ultra clean white linens, hardly moving, out of breath. The charcoal-ammonia-detergent taste that ebbs and flows mitigates my appetite. My feet are square, throbbing concrete blocks. Electrified birthday-party streamers of pain, originating from the back, simultaneously squiggle down my legs and shoot upwards in a multi-colored path through my arms, rendering the fingers stiff.
It’s a beautiful word, isn’t it? Five letters, one syllable, and a billion possibilities.
I love books. I was weaned on them. I cut my teeth on cloth and board ones at eighteen months, sitting in my crib in the peaceful morning hours before my mum woke up, turning the pages to look at the pictures because the words were beyond my reach.
Now I devour books, page after page, sentence after sentence, word after word.
The spinebills have returned; they always do this time of year. Another summer’s about to die, and I’m not sad in the least. The trilling is the first thing you notice about the bird. It sounds like a mini machine gun.
I noticed the spinebill during the first Autumn I was home looking after my son, Tim. When I took three years off on family leave, I discovered important things I’d overlooked when I worked full time. For instance, signs of when the seasons are changing. This tiny bird’s arrival is one of the first indications that autumn is on her way and we’re near the equinox, a time our ancestors celebrated with great gusto. We probably still do, during Saint Patrick’s Day and Easter. Some drink, others prey, some reflect, others do sweet nothing . The seasons change, according to the tilt of our blue planet and the angle of the suns’ ray.