We’re at Euston train station, London. Your pain is so severe we’ve requested assistance to transport us through the bustle. They take one look at you – young, beautiful – and claim there is no transport available. It will be tough for me to carry all our luggage, but we’ll manage because we have no choice. You produce a folding walking stick from your handbag.
Shamefaced, they decide that assistance is available after all.
My best friend suffers from Ehlers-Danlos syndrome. Here she is:
We first met at a burlesque class in Liverpool. I’ve never been much of a girl’s girl, so this incredibly hot human not only acknowledging me, but actively pursuing conversation, immediately had my back up. Why was she interested in average-at-best me? On noting her Aussie accent I declared my love of Aussie men, before lamenting the standard of 100% of Aussie men I had dated (3 – all c*nts, and not in that banterous Aussie sense).
We became friends.
Like me, you’ve probably never heard of EDS. Here’s what the NHS have to say about it:
It’s kind of difficult to describe, but it basically means she breaks like a china doll. This is her again, to drive the point home:
EDS isn’t particular about when it strikes. A rib can dislocate in a steel-boned corset, or during sleep (pssst – she’ll kill me for writing this, but she snores really loudly. I was delighted to have finally discovered her fault. Shhh.)
As an EDS suffer, there are days on end when interaction with the outside world is reduced to Facebook – if you’re lucky enough to have working fingers – or the seagulls who perch at your window. That henna business you wanted to launch and the costumes you planned to sew? Yeah, not gonna happen today.
It’s painful hearing someone you love refer to themselves as a cripple. When pain has driven them to the depths of despair, the words to make it better don’t exist.
This person is, in effect, grieving for the loss of their mobility; this fiercely independent soul, who sometimes can’t even brush her own hair. She recently chopped off that gorgeous hair.
There are mixed feelings about the wheelchair; embarrassment, and relief at finally experiencing fresh air. I try to make her laugh by singing Weird Al and Limp Bizcit as we whizz along.
My fruity sis: you are so much more than your disability. You are the only person who will watch back-to-back morbid documentaries with me, and be enthused about Chilling Photos of Murder Victims Taken by Their Killers. You are humble, imaginative and loyal. You are someone who will stop the car on a trip back to Oz, purely to photograph some Big Things for me.
It’s hard watching you suffer with your family on the other side of the planet. I hope you know how many people love you on this (admittedly shitter – no Big Things, or Kylie, or men with Aussie accents) side just as much.
You may be ashamed of your walking stick, but you are every bit as strong and beautiful as you were without it.