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.

Just So Stories

Before I was diagnosed, I had a lot of things about me that were just odd. Really unusual for either someone my age, or just humans in general, and they all had “explanations”.

I call them the Just So Stories, since they work a bit like Rudyard Kipling’s stories of the same name – They give a reason for things being as they are, with no factual basis, but they sound plausible to a child because they’re internally consistent. And since EDS, before it becomes painful and symptomatic, is made of a dozen tiny non-symptoms, there were plenty;

My nose was always crooked, even before breaking it multiple times as an adult, because a nurse had to break it to fit a feeding tube when I was a baby. (Actually, it’s what a deviated septum looks like from the outside, which is really common in EDS)

Likewise, one nostril was bigger than the other because of being on a ventilator for so long. (Actually, it’s all part of that EDS deviated septum)

I had striae basically from birth because I was premature, and then because I grew so tall. (Actually, it’s another external manifestation of tissue fragility. No matter how slowly we grow, our dermis rips like wet tissue paper)

I failed to finish meals and then ended up eating between them because I was lazy and easily distracted (Premature satiety and sudden ravenous hunger are common in EDS due to problems with the stretch receptors in the stomach, and delayed gastric emptying.)

My veins were all very blue and visible because being on a lot of IV drips as a baby made them rise up to the surface (They’re not that near the surface, but EDS skin is unusually translucent. You can also see the margins between muscles and tendons as light and dark patches)

I had growing pains right up to my mid-20s because I was so tall (Stop right there! True “growing pains” aren’t growth-linked and should stop by age 12. They’re also more common in hypermobile and active children anyway. The pain I was feeling was the pain of walking on hyperextended knees and often subluxated hips.)

I had back pain my whole life because I’d fallen off a horse when I was young, and never been to a doctor (Actually, it turned out to be three slipped discs and a trapped nerve, due to the connective tissue around the spine being so weak).

I walked with a slouch because I was lazy and undermotivated (My spine is unusually curved, giving me a dowager’s hump from my mid-teens, as well as scoliosis. All common in most EDSes).

My handwriting was terrible because I was deliberately being difficult (I have no sense of proprioception, and writing for more than two or three lines has always made my hands cramp and wrists subluxate. Pretty much diagnostic for EDS).

I was always constipated because I found going to the toilet boring, and it was a reflection on my character that I didn’t have the patience to digest normally (Slow gut transit, with the associated constipation or impaction, is common in EDS and usually shows up long before the joints start getting too painful.)

I was always covered in bruises because I was clumsy and careless and didn’t look after myself (Again, fragile tissue. I could brush my hair too hard and bruise my scalp).

I was always exhausted, and suffered from terrible insomnia, because I thought it was “cool” to stay up late (EDS messes with the adrenal glands, so insomnia and disturbed sleep, or odd sleeping patterns in general, are de rigeur.)

I was a terrible runner but a great swimmer because I wanted to be different (Or we could take another look at those hyperextensible knees and the pain that goes with them).

I said that getting teeth pulled was painful because I was hysterical (It’s now been proven a few times that, like a lot of  zebras, I really am completely insensitive to *caine anaesthetics, so I really did have four teeth removed and three root canals with no anaesthesia before the age of eighteen. And people wonder why I’m frightened of dentists until they prove that they’re not pliers-jockeys.)

I was depressed and lethargic because I had no sense of perspective, and there was no such thing as depression in the trenches (Actually there was, they just called it shellshock and they sent people back to Blighty for it. And the same EDS-realted adrenal fuck-ups that cause sleeplessness also cause anxiety and depression, which will be made a lot worse by everyone around you telling you that you’re not in pain, not exhausted and not depressed, when you clearly are.)

…And that’s just a few of the ones I was told, and in some cases which I was forced to believe, even though I had direct knowledge that they weren’t true – Particularly the ones about my mental state. Really, no teenager will subject themselves to sleeping for about three hours a night for five years just to seem “cool”.

If you have a child who seems to have a lot about them that’s odd, stop relying on just-so stories. Don’t assume that everything has a trivial cause, or tha things are “just so”. If the child is suffering, just take them to a doctor. If the child has a lot about them which doesn’t cause immediate problems, but which is obviously “not right” (Again, children really don’t usually develop whole-body stretch marks before puberty) take them to a doctor.

it’s not a sign of weakness, it’s not being a bad parent, it’s just that sometimes being safe is better than being sorry.