Hip Dysplasia Awareness Month

Tags

adult hip dysplasia, arthritis, disabled writers, dislocated hips, hip dysplasia, Memoir, mentoring, osteo-arthritis, pavlik harness, spica cast

June is Hip Dysplasia Awareness Month. I was born with double hip dysplasia. Around one in a thousand babies have some degree of hip dysplasia at birth. Some cases are related to breech birth and other physical factors, some are genetic.  The standard tests at birth are based on a manual rotation of the baby’s hips, if there’s an audible clunk the hip is unstable and it is an indication of possible dysplasia. The tests originated in the 1950s and are still used today. However it’s a bit hit and miss, it depends on the practitioner and the nature of the dysplasia, bi-lateral is often missed because there is no discrepancy in leg length to complement the click test. Put it this way, mine didn’t show up and there was no click with my son either who had the test in 2002.

I often wonder what my life would have been like if that test had been positive. Infant dysplasia can usually be cured by the wearing of a harness (The Pavlik Harness) in the first few months of life when the bones are soft. This painlessly holds the hips in place, deepening the socket, and most people need no further treatment once this is completed. Yes the baby screams when it’s first put on but then they scream when they have their nappy changed so you can cope with it. Believe me this minor and short lived discomfort is nothing compared to what happens if the condition isn’t caught early.

My dysplasia was diagnosed at the age of three. My mother noticed that I ran everywhere on tiptoes rather than walking and fell over a lot. There was a trip to the GP.  I was told to walk across the surgery waiting room after hours so he could see me walk. This is probably my earliest memory; I can still see the spider plants in the sunshine on the window and smell the plastic chairs and my Mum’s perfume. From here it was referral to the hospital, almost immediate double surgery and six months in a half body cast. This was the 1970s, parents weren’t allowed to stay with children in hospital, it was strictly visiting time only – imagine how traumatic that is for a three-year-old. They let me out still encased in plaster, I had to crawl to get around. It was summer, I was often overheated, and the cast itched unimaginably. I had to be held over the toilet whenever I wanted to go. My Dad made a ‘concord’ out of wood on wheels that I used to propel myself around the house and garden. I remember going really fast and flying of it a few times. When it was time to remove the cast I screamed my head off. It was terrifying, the technician tried to use and electric tool which to me it felt like torture, the noise was unimaginable and it was coming for me and my legs.  Thankfully someone suggested cutting it away with shears and I could handle that with lots of soothing from Mum and Dad. My legs were withered and scaly. I had to learn to walk again. The treatment didn’t work and by the age of five I had to have more surgery.

This was the drill for the next twelve years, surgery, learn to walk, hips dislocate, surgery, traction, learn to walk… I had my last childhood surgery at seventeen. As you can imagine I had a lot of scars and not a lot of self-esteem. School sports were a nightmare. Intimate relationships were difficult. I was not alright. Luckily I had a very supportive family and I met my husband at a young and he has been amazing. I’ve had therapy though, to work through some of the childhood traumas. This month of awareness has been very difficult for me because it has brought a lot to the surface.

As an adult I had a fairly normal life until I reached my late twenties, then came the arthritic pain. It was almost overnight. Remember how one minute Andy Murray was playing world class tennis and the next he was limping off court? That’s what it was like. One day fine, the next not. I struggled on for a few years but then I had a baby. A big bouncy baby boy. The pregnancy was really hard. I could barely walk by the end. The birth even harder, you can’t get into many positions when your hips don’t work. I had my first Total Hip Replacement at the age of thirty-four when my son was eight months old. The arthritis was ‘about as bad as it can be’. Two years later I had another, then another baby. You can do almost anything with this condition but it is very hard work. People don’t know you are suffering and most ‘hippies’ pretend they are okay because they just want to be like everyone else. I’m at the stage now where the original replacements have loosened and need redoing. I suffered a severe break around the implant a few years ago and that leg has never been the same. I am tired almost all the time. Sometimes something as simple as standing in the same place for ten minutes results in the need to lie down. I envy people who can easily do sport, who can go for long walks in the countryside without feeling it for days afterwards, people who are thin and lithe and straight-backed. I do what I can, I swim and use the static bike but I have very weak muscles in my pelvis so everything is a struggle.

My oldest son, Noah, didn’t have a positive clunk test but I knew he had it. I took him to a cranial osteopath for gripe and he told me the left hip was out. We went back to the hospital and demanded an ultrasound based on family history. It came back positive. Noah went kicking and screaming into the Pavlik Harness. After crying himself to sleep the first day he slept for 24 hours. The second day he was his normal self. He learned to crawl with the harness on and when it came off it didn’t stop him walking at the normal age. What it did do was ensure that the socket formed properly. After three months he didn’t have to wear it anymore.

Noah with his Dad, Pavlik Harness visible.

I’m writing this for two reasons. When I posted about June being hip dysplasia awareness month on Facebook, two friends said they’d had it as a baby and one said one of their children had it, add to this the three people I knew already with the condition. It’s a lot more common than current levels of awareness would suggest. If you are about to be a parent or have just had a child and have any hip dysplasia in your family insist on an ultra-sound for your new-born, even if they pass the manual test. You might not even know there is familial dysplasia; it might just be an Uncle who limps because one leg is shorter than the other, a grandparent who had a hip replacement at a young age, whatever doubts you have act on them. An early ultrasound is much better than years of surgery. Secondly, many adults have slight dysplasia that hasn’t been diagnosed; problems only arise in later life. If you have deep hip pain after walking or sporting activities get it checked. There are lots of things you can do to slow the arthritis caused by dysplasia, there are special exercises, diets and supplements, aids like knee braces, footware. Don’t ignore it because that way lies years of crippling pain and inevitable replacement surgery. If in doubt – check it out.

For further information on hip dysplasia visit http://livingwithhipdysplasia.com/ and https://hipdysplasia.org/

Sign the petition to improve child screening in the UK https://www.change.org/p/implement-scanning-for-all-uk-newborns-babies-for-hip-dysplasia 

I’ll be blogging throughout the month about this.

Tears In Rain – The First Time I Saw Blade Runner

Tags

Blade Runner, Blade Runner 2049, family, film, Harrison Ford, inspiration, Memoir, Phillip K Dick, Sci-fi, The British Film Institute, Vangelis, writing

Blade Runner 2049 is almost upon us and I can barely conceal my excitement. Blade Runner is one of my favourite films. They better not fuck it up; but going by the trailers and previews it looks like they’ve managed to get it right. We’ll know for sure on Friday. When I’m not working on my novel, or marketing my collection, I’ve got a sideline in movie memoir. I’m collecting together pieces about films I’ve seen with family. Here’s a shortened version of the one about Blade Runner.

Tears In Rain – The First Time I Saw Blade Runner

We made and odd couple, my Dad and I, walking into the dilapidated late night cinema. I was fifteen and he was in his mid-fifties. I had Sun-in hair and too much black eye-liner, waif-like in the way that only teenagers can be, while he was tall and solid, his bulk made bigger by his sheepskin coat.  It was winter 1982 and we’d gone to a midnight screening, both of us wanting to see different films on the double bill. In 1980s northern England there no instant movie streaming like there is now; if you wanted to see an obscure American movie you had a window of about a fortnight and even then only at selected cinemas. If you missed this opportunity you sometimes had the chance to mop it up at a repertory screening. And so it was that Dad and I braved the Yorkshire winter to go and see a double feature of Blade Runner and Firefox. You’ve probably only heard of one of those films, and with good reason, but in December 1982 I first had to sit through Clint Eastwood’s mediocre cold war offering in order to experience one of the greatest films ever made.

I was a film mad teenager. I consumed movies the way other people ate food – they were necessary for my survival. Severe hip-dysplasia had meant a childhood of surgeries and immobility. I spent a lot of time watching television, lying in bed or, when I was feeling up to it, on the sofa in the lounge, from which I’d watch mid-morning reruns of classic Hollywood movies. I was born late to my parents, my mum was 46 and my Dad 40, we were not just one but two generations apart. A love of cinema helped Dad and I bond. He introduced me to all the greats, John Ford westerns, Busby Berkley musicals, screwball comedies. He liked both Marylin Monroe and Ingrid Bergman, James Stewart and Robert Mitchum. His all-time favourite was Humphrey Bogart. I suspect that as a young man he’d been told he looked like the morose movie star because he often emulated his idol; in any given film Dad knew many of Bogart’s lines by heart and often wore a Philip Marlow mackintosh and chewed a match. There was indeed a striking resemblance. Dad had the same pleading eyes and thin upper lip, a square jaw and a slightly dissatisfied expression. We’d watch the movies together over and over; Key Largo, The Big Sleep, The Maltese Falcon, To Have and Have Not, The Caine Mutiny and, of course, Casablanca.

Most of the films we watched were on TV, trips to the cinema were rare, especially as I moved towards adulthood and away from a love of Disney. I began to go with friends to see modern horror movies and comedies. I’d read about Blade Runner in my beloved film magazines and was intrigued – a sci-fi movie in film noir style!  I watched for the listings at my local cinema but it never appeared. I’d just about given up hope of seeing it when I saw the ad for the double bill in Leeds. I showed it to Dad knowing he liked Clint Eastwood and to my surprise he said we could go.

‘It was strange thing to do,’ said my sister, home from college a week later, when I told her about it. It had been an experience. As you can imagine, those attending a Saturday midnight screening were not the usual cinema audience. It had been freezing outside, a few scant snowflakes making an appearance as we walked up the stone steps to the old-fashioned picture palace, slightly out of town. The doors were art deco, their brass handles worn from the many hands that had held them open. Inside we were hit with a blast of acrid heat and the odour of stale popcorn mixed with cigarette smoke hung in the foyer. The bored looking woman at the box office eyed us suspiciously as she sold us our tickets. We opted for the balcony because they were the best seats in the house. There were a few single men dotted around the aisles, some obvious junkies in from the cold and a row of drunk students at the back. Firefox was on first. It had a ridiculous cold war plot about Clint Eastwood stealing a spy plane from a Russian airbase. My Dad loved it, I watched his face more than the film, saw the delight on it, the joy when the hero saved the day.

‘That was fantastic!’ He declared and nipped out for a cigar in the interval, leaving me to sip my cola and stare at the patched velvet curtain closed in front of the screen, even at that age aware that it would not be a good idea to catch anyone’s eye. He arrived back in his seat just as the camera panned across Los Angeles 2019, accompanied by the first notes of the Vangelis score, and I decided that I was going to be a film director.  I sat open-mouthed throughout. Here was a movie that had managed to incorporate all my beloved classic films into something shiny and new. It felt like it had been created specifically for me. I must be the only person who likes the original voice over version the best because it’s the most like those old Bogart movies my Dad loved so much. Dad wasn’t so keen. He snored softly at one point. Afterwards as I enthused he said it thought it was ‘a bit boring and so damn dark you couldn’t see anything’. Within a week I’d dyed my hair auburn, started smoking and wearing vintage clothes and put the poster on my wall. I still have an antique VHS version of the film somewhere, though nothing to play it on.

I never became a film director. But I did study film at University and managed to get a research job at The British Film Institute in London where I stayed for fifteen years. During that time I went to West End premieres, special preview screenings and Q&As with famous directors but still nothing beats that screening of Blade Runner in terms of raw cinematic experience.

Now I’m a writer I use cinema a lot in my work. I often write about people going to the cinema, using the way they respond to certain films as a way of developing character. In my current collection (15 Minutes) I have two stories in which films feature heavily. The first is Lost In Translation which sparks an unhealthy Scarlett Johansson obsession in my protagonist and the second features a teenage boy obsessed with Blade Runner. He listens to the soundtrack, talks like Deckard’s voice over and smokes unfashionable Marlboros.

As we walked from the cinema in the pre-dawn, the snow had turned to rain. It pattered on the car windows on the silent drive home, windscreen wipers creaking.  Dad concentrated wearily on the road ahead while I watched the city lights flick past and imagined that I was riding into the unknown with Deckard, searching for immortality. My Dad is no longer with us. I often think of the night we went to that midnight screening. I sometimes imagine the times he went to the cinema as a young man, on dates, to shelter from the rain or just because he wanted to catch the latest Bogart before anyone else. Only he knew about those times and now they are gone – moments lost in time, like tears in rain.