Breath & Shadow
Spring 2011 - Vol. 8, Issue 2
It still feels weird to wake up with no external cues. I remember the sound of the alarm clock I had in college that my roommate said sounded like a fire alarm, just like I remember the nagging reminders that popped on my screen from Outlook and my fake Rolex watch that I used to set five minutes ahead so that I would never be late. I was proud of the fact I was never late. We were ruled by our clocks and schedules.
We didn't know any other way.
Ella, the wild child, was 15 minutes late for our first date, truly shocking from my view. I clenched nervously on my glass of mineral water and kept telling the waitress that yes, I was expecting company and yes, she would arrive any minute now. She didn't seem convinced, as if a man in a wheelchair could have a proper date. Later she told us our crème brûlées were "on the house", which I hope was because she was embarrassed for her ablest prejudices, not because she felt sorry for us.
Our generation still remembers the blind and deaf, but most younger people have never met a blind person before Ella. I think she enjoys the attention. Now she is truly special, and not special used as a cheap politically correct word that was more insulting than any "politically incorrect" term could have possibly been.
"Hey look, it's the gimp couple!" people would yell to us in college, me with my thenstate-of-the-art Jazzy power chair and Ella with her white stick. That particular stick broke down soon after we had moved to our first house, but she had a new one made of titanium which she still uses.
"It's crips!" we shouted back at them.
I waited until the day after our graduation to propose to her. A civil ceremony for the gimp couple worked out just fine -- as office buildings tended to have much better accessibility than most churches.
It's different now, of course, but then again you can't even get married in a church any more. And yes, the diamonds in her ring are real. In spite of comments of some family members who shall remain unnamed, buying fake diamonds for your fiancée "because she's blind" just isn't very nice.
I can't say I miss Jazzy or any of the chairs I had after it, not even my last one, which levitated neatly above the ground, had superb hydraulics and could even climb stairs. Still, it was a massive improvement over my older ones. I could go anywhere I wanted to, even hiking at Yosemite which I had dreamed of since I was a kid. For some reason I haven't gone back there after the stem cell treatments. I love walking and running, but I guess hiking by my own feet just isn't my thing, or maybe I am just lazy.
People ask Ella if she misses her vision, but she was born blind. She has never seriously even considered the treatments that would give her perfect sight. Her blindness isn't depriving her of anything. She isn't bothered by the fact she has never seen her husband. "No offense," she says and laughs.
My chair wasn't the only piece of high-tech equipment I used on our hike, but Ella didn't need anything except her stick. When she wants to light a fire, she uses matches -- yes, they still sell those, even though they may be difficult to find. She still uses our microwave oven, even though I've tried to tell her it may not be safe, not to mention the waste of electricity.
"You think too much," Ella says. She always wakes up shortly after me and senses that I'm awake.
"I do not."
"Sometimes less is more."
I was among the skeptics who predicted that the abolition of clocks and calendars would sink the world into a state of anarchy, and I miss the way the four-number strings used to feel meaningful and gave us an illusion of control. I would go to bed at about 23:50 and my alarm would ring at 06:55 to give me seven hours of sleep. Five minutes later I got up to brave a new day, to fulfill the quests written down in my calendar. Forgetting all of that takes much more reprogramming than adapting to walking.
For Ella the whole thing was no big deal. It just meant never being late again
Originally from Finland, Maija Haavisto is an opinionated CFS/ME patient living in Amsterdam, the Netherlands. She has had a medical textbook and another non-fiction book published. Her novel, a "cripfic" titled Maria’s ilmestyskirja (Maria's Book of Revelations) will be published later this year. Her website is at http://www.fiikus.net.