Zebra Senpai

This will probably be a car crash of a post.

I’ve been really thinking about Japan a lot lately – Something about the particular kind of crisp cold we’ve had lately reminds me of autumn in Tokyo, the perfect kind of weather in which to put on some fingerless gloves, pick up a hot coffee in a can from a vending machine, and wander aimlessly around an almost-impossibly busy city, listening to the 16-bit twinkle of pachinko machines and the rush of trains overhead and underfoot, breathing in the smell of falling ginko leaves, and generally revelling in the sheer neat, flowing, well-organised urbanness of it all.

It struck me, comparatively recently, that when I’m sad about not being in Japan anymore, I don’t just miss Japan, I miss being ablebodied, since that was the last year that I managed to “pass” in.

Every Monday, I’d come home from my shamisen lesson and spend the afternoon resting my hands because my wrists hurt so much. In the evenings, after Dearest was out at work, I’d Skype with one of my pen-pals, and I’d do it lying down because sitting upright was so painful. During the day I’d still walk tens of kilometres, stand for hours on trains, teach six lessons a day in Toda whilst spending my dinner hour cycling around the nearest towns, or shuttle back and forth between Tokorozawa, Gotanda and Hasune, or (after the earthquake) donning steeltoed boots and a hanten to hep re-setting fallen gravestones in my beloved Zoushigaya-reien, but I was pretty much already obviously more ill than I had been before I left.

I returned home in the September of 2011. By the spring of 2012, I was taken to an occupational therapist by the then-new friend that I now call my sister, to get help for the pain in my hands. I degenerated for another year after that, until I had to admit that the pain was everywhere and all of the time. I was given naproxen and codeine in May of 2013, a tentative EDS diagnosis in August, my first bottle of morphine in October, then finally saw the specialist to confirm it in July 2014.

But that’s not the whole story.

Whilst I was in Japan, a then-peripheral-internet-person-I-knew was in Canada, getting a diagnosis of EDS. This was the first I’d heard of it, and my response was something along the lines of “Oh god, hope you’re all right” [Let me google this…]

She had comforted her followers with a brief “I know that many of you will now be thinking “Do I have EDS too? And the answer is probably not – You’d have to have been really sick, for a long time, so you’d know. And it’s really, really rare.” but I looked at the list of symptoms, looked at myself, and quietly filed it away as “This sounds a little bit like me.” I met another of her friends, also with EDS, and reading about their day-to-day life made me think “Yep, this really does sound like me”.

On the same day in November in 2011 that I’d met my sister, I also met Best Friend. We got on like a house on fire from the start, enough that the friend who’d introduced us to each other admitted that he’d deliberately kept us apart for about five years because he knew that if we met, we’d wreak havoc, love each other unto death, and (subtext) would completely push his nose out of joint in favour of the other.

The fact that the old schoolfriend who had tried so hard to get us not to meet never gets mentioned in my blog is probably telling – This was one of the last of his self-centred bullshits, in which he’d manipulated, undervalued and generally treated-as-things the people around him.

Best Friend is a creator of things – Better than I am now and better than I ever was – and I found myself always making excuses for my current lack-of-creative-output. He knew my hands were ruined, he was the one that first sprayed the inside of my wrist-braces with an inhaler to stop me from scratching off my own skin, and he was pretty much the only person to offer reasonable condolences at the loss of their use. And, honestly, encouraged me that it was worth trying to keep working with them, even though it hurt and I was producing work that I was ashamed of, because at least it was something.

Anyway, about a year after first meeting Best Friend, in the middle of a month-long blizzard, I spotted a symptom in him that could be nothing other than EDS. I pointed it out. He went into treatment and, soon after, was diagnosed. In return, he pushed me into also going back to a doctor, and thus we went through diagnosis and treatment together.

At some point it occurred to me – Almost every zebra that I know has their zebra-senpai, the person who usually knew them well enough to say “Look, having put together all of the things that’s wrong… This is what you need to say to a doctor.” My two online friends did that for me, then me and Best Friend did that for each other, then both of us have done that in-turn for other people. Looking back even further, at least one of the two online friends credits someone else with putting together the jigsaw pieces for her first, before her doctor got to her, and I bet that if I asked some of the many other zebs that I’ve now met if they has a zebra-senpai, they’d be able to name at least one non-doctor who put the idea on the table first.

And this makes me worry. I worry because I am part of a well-educated, accessible, tolerant community who very much look after each other and aren’t afraid to go digging through PubMed to make sure that they’re helping correctly. And there are definitely zebras out there who don’t know anyone else like them, who don’t have internet access, who don’t have the background to stand up to a doctor and say “No, you’re wrong and here’s why.”

There’s thousands of zebras out there who have no idea that they’re zebras. They think that being tired all the time is normal, and falling over when their hips fail is clumsiness, and that hand pain and loss of function is just overwork, and probably a dozen different just-so-stories about why their back hurts and shoulders don’t always move right and why they only eat every third day and defecate once a week.

If anything needs an awareness campaign, which I’m usually so sceptical of, it’s EDS.

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6 thoughts on “Zebra Senpai

  1. Not least among medics. I’ve sent a few people online to their GP with a list of questions, normally to have them rebuffed several times until they insisted on a rheumatologist.
    It is telling that many zebras start with a mental health diagnosis along the lines of munchausens

    • Very true. I got a lot of “It’s your LIFESTYLE!” with the emphasis being “If you didn’t do Norty Porn, and had a desk job – ignoring the fact that you literally cannot sit upright or stand at a desk – you’d be Fine.”

      And then, yep, plenty of “Well, you’re depressed and suicidal anyway, maybe we should just treat that.”

      I’ve known far too many of us get told “You’re converting emotional pain into physical pain!” or “You’re just anxious and looking for connections where there aren’t any!”

      If I could make it a legal requirement for medical schools to be shut down the second that someone uncritically says “It’s never a zebra when you hear hoofbeats” I would.

      • I mean it’s not like having a chronic and painful physical condition is not well known to be a significant risk factor for depression and suicidality…No extensive literature covering things like that, oh no…

        Bloody Freud being over- or mis-interpreted yet again with the “conversion” stuff.

        I have to admit, despite being the child of physios, that until I encountered you 2 and some of the other zebras of our mutual e-acquaintance I was alarmingly unaware of EDS and so, despite sharing mis-givings about awareness campaigns, would agree that more awareness would be A Good Thing.

        PS Inky: how did the CWT go? Didn’t see you on Sandwood Bay.

      • It does bring up the alarming intrusive thought of pinging these people with an air rifle whilst shouting “SMILE! BE HAPPY! IT’S ALL IN YOUR HEAD!”

  2. I don’t have EDS, but over however many years involved in disabled communities have seen so many friends diagnosed with something else entirely, or living in the hinterland of impairment with no-particular-diagnosis, eventually getting that EDS label. One of the saddest thoughts I have about it is that just before I got involved in disability activism, a young woman poured her heart out to me in the pub about her health and her struggles in relationships, work and family and her fears for the future. She had EDS, which she described as a very rare condition and when I said I’d previously found support with other people with my condition on-line, she dismissed this possibility – she’d never heard of anyone else having EDS, they just wouldn’t be out there.

    I imagine by now she’s found them, but if I’d had that conversation a year later, I could have pointed her straight there.

    • Topping the list of “Comments to make me cry a bit today”. I hope she found other zebras too – If nothing else, we do seem to be organised (The EDS Society are good at keeping in touch) and I’ve not yet met a zeb who isn’t happy to share knowledge with any other one that we meet.

      Feel free to send any other lost stripeys to me here, or on Twitter where I’m @Dendrodoa (or to ask for Skype) – Always happy to talk to people, even if it’s just nattering rather than serious EDS-related stuff.

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