“On a scale of one to ten, how much does it hurt?”
It’s hard enough to explain how badly something hurts without also relying on someone else’s scale of reference.
Sometimes I lie prone in bed and wonder what relief would be like to take my lower-body off and hang my legs over the end, as you would stockings on Christmas Eve. Sometimes I only remember I have pain like an imprint left in the sand.
Eh, A seven?
“What kind of physical pain is it? Is it a hot pain?”
Describing pain types is like describing an entirely new colour of paint without the swatch.
Sometimes I contort my face close to tears walking up the stairs to my home because I feel I am failing.
Eh, it is a hot pain. A spongy, hot pain – like a coil element heating up and you can feel the ridges of it zinging with a glowing red – like molten custard running down apple pie.
I’m slowly coming to terms with my lifelong chronic pain.
I have congenital, bilateral hip dysplasia. There. Said. It. I can relax now back in the circle.
I’ve never been so open about it until this year, this now. I’ve been blessed with friends recently who have their own dealings with pain and mobility. I’ve seen how they cope and take ownership and complain, and I’ve found myself inspired in my own small way.
I want to explore my pain more. In order to do so, I want to understand why I’ve never been comfortable talking about it. There is no doubt some of this is an existential guilt. My pain is surely not so bad. Not as bad as others with legitimate pain issues. I mean, we all have a daily pain. We are all constantly and insistently aware of our joints jabbing and rubbing away at us, our bodies failing us at every waking moment of every day. Every step we've ever put together. Always. We all live through an interminable ache.
My mother almost mythologised my condition from my beginning, which already has good enough context for the beginnings of any gothic biography around:
I was born in a hospital for the mentally ill.
It wasn’t during a thunderstorm, where the walls bled rain water through ancient bricks, but it might well have been overcast.
When I was delivered into the world (my mother told me when I was young) the doctors whisked me away, tested me and returned me with the welcome result: “Your boy’s not got bone cancer”. She went on to say they diagnosed “inverted hips”. This, she told me, was a rare condition and one that invoked interest about my skeleton with medical academics and consultants. It was a condition that, mother went on to tell me, was the reason why I walked funny when I was physically tired and why I felt pains in my hips. My mother explained she had to make a decision there and then to either let me live a normal childhood, like any other healthy boy, or be taken in for experimental surgical procedures. She opted to give me a normal childhood.
And that was it… that was my only take on the condition I had. No more information, no less information. Inverted hips.
Most children, I guess, have literary character heroes. Hermione Granger, Sherlock Holmes, Paddington Bear. Mine was – you know the lame boy from the Pied-Piper story? – well, him. Instead of a cautionary story about honouring agreements, the story became a dark morality tale recounted as a bedtime story by my mother of a wise, lame boy not being so swiftly led into following dreams and promises of gold, warm caramel and rainbow delights and into certain (at least in a developmental sense of being children forever) death in the mountain by a stranger, but finding the strength to remain in the grey stone reality to work hard, remain in school and help a village in mourning for a generation lost to frivolous venture. Mother meant well: give me someone to relate to.
Over my strictly youthful years I was often seen by doctors in hospital. My legs were handled and manipulated at various angles and degrees. X-rays were taken. A visiting contingent of Swiss consultants were invited in to look at my boyish limbs. My legs were measured with ink to check on simultaneous growth. All the time, I was a silent partner and my condition was the main character. The doctors would take my mother aside and give their assessments. I was able to gauge them with the various nods and shakes of their heads.
I would leave the examinations and mother would refer to my “snake hips” in a kindly tone. “You were born to run fast!” she would say.
My mother and father (who dropped us at appointments) were keen not to discourage me to partake in activities. School, after-school groups, parents: they didn't inform anyone who could perhaps have given me some leeway. My condition only exited in my house and in medical appointments.
In my school and boy scout group, I was as active as any other child. I ran (fast), I jumped, I clamoured, I swam, I failed to work out how to climb rope, just like everyone did. I did not feel free on many days. There was a soggy rag balled up in my mind. There would be days, I wished I wasn’t being treated the same. I wanted some special dispensation because I felt inferior within myself and wanted an exit. I was doing the same things but there was something wrong with me. No one knew, of course, and I was very isolated with my body.
I went on a class field trip: abseiling. Gravity does most of that. Only we had to climb the rocky hill first. The expert spoke about rock climbing techniques: "Try to put a leg here, and hand there, then miss out the easy purchase - go for the harder one with the other foot! Push yourself!"
I opted for the easier ledge to get me up to the others at the top. I made that decision because at that moment I wanted to be comfortable.
"Cheat! Yer a wee cheater!" called out our supervising teacher, who was our usual German teacher in school but now stood above me, pointing in her fleece and orange abseiling helmet in the middle of the woods.
Well, you were my first teacher crush mainly because you only spoke German in class and I thought you were a continental woman whose natural tongue made German sound just the right side of frightening, but now it turns out you are from central Scotland. Seems we both have our hidden sides, fraulein.
Now that actually hurt. My condition to her was a cheater.
I was harbouring something only I could gauge that limited me in some scientifically recognised but otherwise unrecorded way. I had not the language or understanding to communicate.
Because, of course, “inverted hips” sounds completely fabricated, medically. Like someone saying they have foggy lung or hopscotch eye. “Oh, this? I’ve got high leather levels”. When friends saw me tripping one leg over the other, or limping, or pained, or standing with my feet pointed across each other like they had discovered a lay-line, telling them I had inverted hips generated obvious follow up questions that I had no answer to. I felt a fraud. So I shrugged and said I didn’t know. In the end I stopped saying anything much about it to anyone.
In the early days of the internet, when it was all animated goblets of fire on black screens and lime green text, I would try and look up information on inverted hips. There was nothing. My cause of pain was either so rare only I had it, or it was false.
As a teenager I was living with my pain, pretty much secretively. Mother was taking me to a osteopath to crack my vertebrae once a month as this was all we could afford. I’m sure she’d want to take me more often and for more variety of bone cracking. The dysplasia constricted a lot of my core soft tissue elasticity and mother was worried I was developing a rounded spine. Therefore I was also going to a physiotherapist. The appointments were in a cold room that looked like a janitors office – replete with draughty dark floorboards and a diagram of the human body skinned and pinned to the naked plaster wall – of a school built in the 1930s. It was down here I was getting my hamstrings stretched. Other than my family, no one knew. I was OK with that, because I didn’t want thought like the lame boy missing out on the Pied-Piper’s journey.
“How do you manage your pain with keeping active?”
I put my body through various activities to test my pain threshold and wonder what level is ever too much to take.
Eh, over the counter pain killers, joint supports and strapping. A bath?
I ran on, rugby, badminton… all the time wondering what sort of damage I was causing to my joints. Should I be doing this?
At age 15 the doctors spoke again to my mother regarding doing surgery on me. I was sitting beside her, so I was able to understand more about my, up to then, strangely home-concocted condition. My pelvis and hips simply hadn’t developed as they should have. It could have been a lack of blood supply, a deficiency of nutrients or something else in the womb. Something very slight. Development is a game of fractions. I always think this was unfair, my mother blamed herself.
The doctors wanted to operate. Break my pelvis and both femurs: reset them as they should be. I would be in traction for around 4 months. In order to keep my legs growing evenly, metal shafts were to be nailed to my leg bones and, turning a valve tap, cranked a notch apart every so often. The recovery process would be a year. I imagined a Victorian hospital ward the colour of bandages and me hoisted on wires up in a hospital framed bed and nurses draining me and doctors tinkering with the ratchets bored into my bones, like a scene from Kafka, then black rimmed NHS wheelchairs and lonely days looking out windows onto lawns through hopscotch eyes.
My mother asked me what I wanted to do. I had exam worries and friends and hobbies. I declined the operation.
“What would you like done to help with your pain?”
Someone to take a sledgehammer to my pelvis to crack it open and release the damnable pressure.
Eh, just whatever the experts think is best.
In my 20’s a GP giving me a general check-up was surprised at the rotation of my legs. I pleaded ignorance. I went back to the hospital for more X-rays. Going as an adult, I learned more now about a condition I was increasingly comfortable living with. I finally saw an X-ray of my pelvis and hips. It was beautiful. I wanted to take it home and frame it. Make it a stained-glass window. It was the first time I could look at what was troubling me.
Instead of curved ball and sockets placed by a master watchmaker, my hip joints fit into my pelvis like pins, hammered in like an apprentice blacksmith. Straight up. The knee bones connect to the hip bones connect to the spinal column and straight to my pain receptors, as the song goes. All impact shooting up, no stops between joint and hinge, refreshments served in the rear of the knee cartilage. I saw white mist around the joints – osteoarthritis. This is a given with hip dysplasia.
The doctor offered me surgery: a hip replacement. 3 months recuperation. I had just begun my career and enjoying my early adulthood. I declined. He said I’d be using a walking stick within 10 years.
Then nothing. Nothing changed. I got on with my life for 10 years… pause for Gonzo story telling effect, without the need of a walking stick. In fact I increased a little of the pain killers and improved the quality of my joint supports and simply continued as before.
Until in the past 8 months. The pain was bad.
“Where does it hurt?”
A knee feels blown-up by cartoon TNT and somebody has shot a bolt gun through my lower spinal column and I’m sure there are micro-robots with tiny clamps for hands on my hamstrings. At least my hips are ok – numbness isn’t pain, that’s just medical fact.
Eh, in my hips and knees and across my lower back. My upper thigh, lately. All the time.
It took me a long while to go to the doctor in my 30s. I’d avoided doctors with this complaint and they never got in touch. What’s the point? Was I actually suffering? Maybe I’ve grown out of these inverted hips. Maybe they don’t exist in that dimension anymore. Would I be wasting everyone’s time? When I crawled about a bit one night, high on wine, declaring my lower body wretched and fucked, I would buy a horse and then give it for a walking stick. I reached my nadir and agreed to make the appointment. For one evening, I had simply had enough of it.
I thought of my friends. I wanted to make the appointment and find out more.
After I made the appointment, deeper doubts surfaced. What if I really was in a bad way? And what if I was given a means to take away the pain? Booked in for surgery, injected, sent for tests? What if the doctor agreed that I should get a stick, if I felt it would help? Would this simply be an affectation? Something to let me finally show-off my pain? If I hadn’t considered the implications as deeply as I now faced them.
My emotional attachment to a physical pain I’ve known and been with all my life – one that often reminds me of happy days – is complex. Would having it removed, nerve by nerve, bone by bone – actually living without its signature – remove fundamental parts of me by unpicking neurons? Am I arguing with a redundant caveman masculinity trait? Just take the pills!
Still. Do I need the pain as part of who I am?
My pain has never shaped my options, but it understands what I am. I prefer to suffer trials over unwarranted pleasure as a trait. The pain, I’ve often thought, suits me. We are not friends, but the connection is not toxic either. It became the silent partner in it all at one stage long ago. It has been something that reminds me that this is my life. These are my legs. This is my pain. This is how I feel and no one else does. The pain has also been something to rally against. Rage against, even. When I need it to, it makes me want to put one foot in front of the other again. To make me take one more howling step along.
My relationship with my pain is masochistic. I like this pain most of the time. I enjoy feeling its outer limits.
I understood both too little and too much about my body. I tweeted about my doctor's appointment and x-rays and the support I received was hugely appreciated. It took the trepidation away.
The GP pushed and pulled my limbs as they all do. He sent me for x-rays.
The nurse positioned me once and twice more under the aperture apparatus with her cold hands on my hips. I noted that nowadays radiology staff don’t wear lead aprons. I joked I asked her to x-ray me like one of her French skeletons. They send the x-rays by email.
“You know that pain is subjective”
That’s what I’ve been trying to convey in this blog. These asides are becoming worryingly meta.
I’ve coped OK with it, but recently I’m starting to feel it is getting me down.
The results were returned. The GP was utterly nonplussed as he took the computer mouse to scroll up and down the notes on his monitor with all the body language of a sigh in his wrist. All my years of quiet furrow in getting on with things, of conjuring the lame boy without complaint because of his heroic virtue to stay behind and choose a hard and rewarding life had, for one brief moment, been a firework now suddenly turned smoke held in the chill as it floated off.
The GP relaxed on his black office chair and half-spun to meet me. “There’s nothing I can tell you from the x-rays that you don’t already know. You already know you have congenital, bilateral hip dysplasia. It’s not severe. A bit worse on the left. There’s wear and tear but nothing to worry about. Your extreme inflexibility around the area is causing you to pull on hamstrings and tendons. Keep taking pain killers as you need them and look into getting a few exercises from a physiotherapist to get those soft tissues stretched and that’s all I can say to help you.”
The GP, though, did tell me something I didn’t already know. From “inverted hips” to “growth defect” I now have a legitimate term for the cause of my walk, my pain: hip dysplasia. Something to research. It turned out to be easy to do so. It is not that rarefied in the medical textbooks. My mother telling me I was one of only a handful of people in the world with it was a well-meaning, if baffling lie to tell me. It even has its own fucking institute, probably in quite a reasonable sized building, too.
I am sort of stunned to have lived this long with something I found profoundly symbiotic and I am only now able to begin to fully understand and feel confident about entertaining. It is valid. All that weight I’ve felt pressing down on all those years (and let’s be honest, that can’t be good with hips like mine) actually means something.
I still have reservoirs of joint pain in me, to me – the doctor’s idea of severe or not, means little – and I am in pain. However, now I don’t need to be so cloak and dagger. I can openly take medication, not need to put on joint supports in cubicles and hold onto bannisters if I want to and if someone asks me, I can give an answer I believe in. An answer I know. I can point them in the direction of an entire Institute.
Today I’m trying hard to take the strength I see with my friends. I am taking medication and continuing with supports. I am going to book into physio and for regular massages. I am more positive and more healthily approaching my pains and dealing with them as part of a truly normal way of living: that is openly and without guilt on their limitations and allow honesty into my writing. I want to thank those who know who they are for letting me travel with them - at my own pace - to the mountain’s open mouth again.
Well I don’t know if this feels good, but it does feel different.
All I need after this is a pelvis bone tattoo on my arm. And for more people to understand when I say I have dyscalculia. Which, considering my biographic beginnings in that mental hospital, seems an altogether much more in keeping goth medical term to tell people I have.
