by Maija Haavisto
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
We didn't know any
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.
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
"Hey look, it's the gimp couple!" people would
yell to us in college, me with my then-state-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.
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
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.
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
"You think too much," Ella says. She
always wakes up shortly after me and senses that I'm awake.
"Sometimes less is more."
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.
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