bending and breaking and bearing up
Tuesday 14 May 2013–
Ehlers-Danlos Syndrome,
Hyper-mobility syndrome
That’s how I felt. Something had shifted, the world I was
familiar with had altered. And all with a simple diagnosis from a German doctor
working in the UK because she prefers the informality of the dress code for
consultants. “Ach, we wear the white coats in my country. Here, here I am
allowed to dress nicely.” Followed by a smile of deceptive charm and
penetrating sharpness after she had examined me. “This is your problem,” she
told me gently . . .
. . . and then, somewhat less gently, told me to Google it
to find out more.
So. Hyper-mobility syndrome (or Ehlers-Danlos syndrome stage
3, as it’s more commonly known in the USA). It sounds deceptively innocuous.
But it’s not. It’s complicated. And it makes life much harder than it needs to
be.
At heart, the simple complaints are extreme muscle aches and
apparent joint pain coupled with widespread double-jointedness. As a kid, I was
able to wrap my ankles around my neck, fold my legs into impossible positions,
and twist my arms around backwards. It seemed like fun. I didn’t know it was
hurting me, or that the reason I naturally fell to standing in strange
positions was due to a lack of proprioception: I was pushing myself into
extreme angles and outré stances so that I could sense where I was in relation
to myself. An arm here. A leg there. A foot twisted over thus. It was all
feedback in a system that was too often numb to feeling, though I wasn’t
consciously aware of that, or of what I was doing and why I was doing it. The
immune system isn’t good with the complaint, either. I won’t list my childhood
illnesses, but it was a rare month that went by without me being bed-bound for
at least a day or week with some cold or flu or other.
A boyhood memory, sharp and aching to this day: high summer
and I am in my warm bedroom that captures the sun. The window is open, I am in
bed, probably reading, and in the distance I hear the sound of children playing
during the first break of the school day. Laughter and screams and fun, rising
and swelling on the heated breezes, then abating altogether and falling silent
as lessons resume. I feel disconnected, at a loss, left out and left behind.
The pattern that marks my school life continues that way. A
week off, then exhaust myself trying to catch up on missed work, succumbing to
further illnesses and missing more time in school and catching up again.
It couldn’t continue; I couldn’t continue to operate like
that; I dropped out of school earlier than I should have done. I wish I’d known
what was wrong with me; it might have helped; I might have been able to find a
way through my disabilities.
Hyper-mobility syndrome is a genetically inherited
condition. My mother probably has it, and probably her mother before her had it
too. There’s a problem in producing collagen. It isn’t top quality stuff, and
leads to stretchy skin, an impaired immune system, digestive tract issues, lax
joints. Generalised anxiety stems from this. Tiredness. The brain has to work
so much harder to make the body function correctly, so concentrating is hard,
systemic structured learning is difficult. At the end of a tiring session of
work or play, I often find it impossible to keep my eyes open. The weight of my
eyelids are so overwhelmingly vast that sleep is impossible to resist. But
sleep isn’t a curative. You wake as tired as when you went to bed. You’ve just
had a bit of a mental break from the pain.
I am diagnosed over thirty-five years since I was
hospitalised as a five-year-old with a mysterious hip problem. Coming out of
hospital just after Christmas, I had been strapped up in bed and had had to
learn to walk again. Part of me feels that I have never quite overcome the
fever that I knew from that hip pain. It’s always there, a fire flaring every
so often in my blood, sending streamers into my mind.
But now I have a diagnosis, and it explains in a way I’ve
never known before, the track of my life. It’s a scary journey ahead, and when
I look over my shoulder I see that I’ve been wandering through marshy fields
and tangled forests dappled with shafts of light and gathering darkness. It’s
been a clumsy progression so far, with many trips and falls, bruises uncounted,
and strange diversions along the way.
Yet I’m here. I’ve got this far.
And I have a little knowledge now.
