I often wonder what the world would be like if everyone was like me. The first conclusion I come to is that there would be no ‘everyone’ because we would be too ill to work for food, and would have starved to death long ago. The unfit do not survive.
After I
have finished with this sobering thought, I move on to wondering hypothetically
what it would be like if society wasn’t designed for able bodied people,
because that is where a significant chunk of my discomfort comes from. The
energy packet and lifestyle of the majority is completely out of kilter with my
own. Imagine if society was constructed for a different set of humans.
One of my
parents, whom I love dearly, is celebrating a significant birthday this year. I
was fully expecting the festivities to occur from twilight onwards. This is a
lovely time for most to celebrate, after work, over the heartiest meal of the
day, lingering on into the night. I had already decided that I was willing to
suffer for this. Headaches, insomnia, vertigo, exhaustion, a few days of
dysfunction. And then the invitation arrived, and it was for a 10am brunch. Joy
erupted inside me. My first thought: oh my goodness, I don’t have to add extra
pain to my already pain?! Of course there will be pay-back for the day event,
but not to the degree there is for a night event, an event that begins when I have accumulated an
overwhelming need to lie down in dark silence after being up for eleven hours
already. People have every right to invite me to celebrations that work best
for them, just as I have every right to decline and preserve the health I do
have. But when they have considered me to a significant degree, that warms me
right through to my fingertips. They care about me too. That is exactly when
people like me would have their celebrations.
I have been
very isolated these past seven months, because of that vicious post-baby vertigo.
My sense of missing out has been strong. One morning I decided I could not
endure another moment in my dull home with my moaning-myrtle infant, and I went to hang
out with my friends from church as they do every Friday. For the first thirty
minutes, it was so worth it. I was like yes, this is what I need. Two hours
later, lying on my couch, vertigo, unable to care for child, I vowed off the
experience. It had been a welcome distraction but the afternoon consequences
were too great. I couldn’t afford to suffer that much. And if I had stayed for
just half an hour, the part where my body was ok? Well, then I’ve only just
arrived and barely settled in before I bluster out. I felt afterwards a
stabbing envy that my friends were going home with their babes in tow, and probably
getting lunch for themselves, probably even cooking dinner for their families,
something I haven’t done in years. I couldn’t even feed a puree to my baby
after going there.
The
isolation hit me in the face. I crave companionship, but companionship doesn’t
come in my size range. It comes long, frequent, and inoppurtune. I could come
and go in a manner which works for me, but in my ideal world, I am not the odd
one out, always sticking out like a sore thumb, always modifying because the
default is not made for me. My utopia is a place where social interactions are
designed for bodies like mine. A place where I am not perpetually the uncommitted no-show. Surviving with very little face-to-face
friendship, or suffering for what I do partake in, this is one of the most
awful parts of chronic fatigue syndrome.
How would people like me get their companionship?
We would
meet in very small numbers, fortnightly, in an open air park. To remove the intensity
of walls, confined spaces, fluourescent lights. We would meet for an hour,
maximum, reclining if possible. We would never meet before 10, or after 4. Maybe
we would come by taxi. By broomstick would be nice. We would shop at markets
and naturally lit street shops, not malls. We would rest in coffee shops with day
beds while we were out in winter, and on the grass in summer. Actually, no, it
would always be spring. Maybe we’d all send a message to each other after we’d
caught up, saying we were thinking of each other as we recover, reminding each
other that the pain wouldn’t last, and it was worth it for our spirits.
The strain
from not fitting would be gone, even if the rest wasn’t. The rhythms we formed
would be custom made for our abilities, and it would be less lonely.
But, I
wouldn’t wish this on my worst enemy.
Let alone
the majority.
