Walking Test One: Ditchling Beacon
Last week I completed my first South Downs Way walking test, with my good friend Beth and her cool dog, Bo. I wanted to gauge how far I could walk without too much pain. And how long it would take to recover.
As it turned out, it was also a good test of the equipment and planning I’d need to walk the Way properly.
The plan was to walk 2-3 miles from Ditchling Beacon towards Lewes and back again, on fairly flat terrain.
I learned my first lesson before I even took a step. As my SatNav announced “you have reached your destination” I looked at the farmyard I was in, nestled in a valley with no mobile signal, and thought ‘clearly not Ditchling Beacon’. Lesson 1: a paper map would be quite helpful.
Fast-forward 30 minutes and a very patient friend - and we’re off walking on the top of the ridge. The wind and rain immediately pick up, but thankfully I have a waterproof coat, trousers and boots – fitted with my new orthotics. The rain quickly passes and after an hour and a half we stop for a rest and a snack. Which leads to lessons 2 & 3 in quick succession. Half a Terry’s Chocolate Orange isn’t enough to eat (however yummy). And weak glutes mean I have no natural padding on my bum so a seat pad is going to be handy for resting.
At this point I smile as I recall trips as a small child with hip dysplasia. My dad was inventive and my mum always prepared. These days you can buy special equipment for DDH like hip spica car seats (something Steps charity help fund). But in the early 70s it was a bit more DIY.
So my dad ‘adapted’ things. Picture an old-fashioned canvas pram with holes cut out of each side for my fully abducted plastered legs to stick out of. Or the leather patches he’d stick on my knees to stop them from wearing out when I dragged myself across the floor (my version of crawling!). He searched a long time for an old wooden high chair – so he could put the side bars on hinges and mum could slide me and my plasters in and out sideways. And similarly made me a swing. He was quite the inventor really and when I could finally walk, Sheffield Children’s Hospital asked for all the equipment. Today I see parents pass their specialist equipment onto other families in the Steps Facebook group.
Back on the South Downs Way and to the final Lesson. On a round trip don’t walk too far on the outbound leg. It’s much harder on the way back! We both felt it and Bo the dog started to get that “I’m loyal but really where’s the car now?” look on her face.
As we got back to Ditchling Beacon we'd walked over 12K. I ached a lot and it took three days to stop hurting. Of course it was lots of fun with a good friend. And it made me go out and get an OS paper map, an inflatable cushion, some good energy snacks, and some walking poles to be better prepared for my next test. Which will be to climb up and down one of the biggest hills.
My walking journey with hip dysplasia continues and bit by bit I’m getting better prepared to tackle it. With the right equipment. And a little help from my friends...
Left hip, right path. Getting me walking with hip dysplasia.
Recently I found myself overnight in Alfriston which, as it happens, is directly on the South Downs Way. I had a spare hour or so and decided to walk along the path that I will return to at some point on my 100-mile walk. Straight away I had a choice - left path or right path?
This felt like a symbolic turning point as I had just spent a week on the Hoffman Process exploring my past and finding my own 'right path'. Over the course of that week I realised I have quite a sketchy memory of my childhood surgery for hip dysplaysia (DDH). In Alfriston I realised I could take the left path and remain sketchy. Or the right path - find out more and own the story of my body.
I see so many posts on the Steps Charity group from mums and dads who want to know more about the treatments and surgeries their child will go through. So I started by asking my mum about her memories of my surgeries.
I had my first operation when I was 5 months old. My left hip socket was completely missing as was part of my pelvis. So it was clear that walking was going to be a challenge. Who knows what they could do today with 3D printing or growing bones - in 1971 those were probably sci-fi!
Sheffield Children’s Hospital is a teaching hospital and my mum tells me we were regular guests in the lecture theatre there. My case was unusual so not only attracted medical students but also orthopaedic consultants from other hospitals who contributed ideas about my treatment.
My mum then tells me about a turning point when I was 3 years old. I’d had eight unsuccessful operations already – they were grafting muscle from my groin to try and strap my femur to the pelvis (being medically untrained I can only picture something like a hinge and a rubber band!). They were concerned that I was 3 now and had to get on my feet soon if I was going to walk.
On this particular day my own consultant - who was always mindful of phrasing his explanations in front of mum - wasn’t there. Instead my mum heard another consultant say “so as you can see it’s a hopeless case”. She summarily grabbed me from his arms, saying “if that’s the case, why are you putting her through any more of this” and took me home. Convinced I would not walk.
It was a turning point because it led to a vote and a decision. Three of my consultants came to see mum and dad at home. They explained that there had been a vote and some consultants had voted not to undertake further surgery. But that the three of them wanted to try one more thing. If that didn't work they would stop.
On the day of the operation, after watching me go into theatre, a nurse called mum into the office. On the table was a stack of greetings cards. They had been sent to the hospital by people from across the council estate where I grew up. The nurse turned to mum and said “This is going to work. Because this child has so many people rooting for her.”
And of course, it did. The muscles finally held the femur in place. It was my last chance to walk and I took it. Five days later I came home and took my first steps. I guess I’d watched all the other kids around me do it, I was just waiting for my turn.
Today I’ve been able to walk a few miles along the South Downs Way in Alfriston and I'm preparing for a series of big walks to complete the 100 miles from start to finish.
I know that I wouldn’t be able to consider doing that without two dedicated parents, two supportive siblings, and friends, neighbours and a community cheering me on. And a medical team in Sheffield, led by Mr DK Evans, who didn’t give up. Somehow, together, they gave me my first steps on the right path. I will always be grateful. And I intend to use them wisely.
If the shoe doesn’t fit... orthotics and hip dysplasia
Walking my first 10K for Steps last month taught me a couple of valuable lessons. Firstly, I need to build up my leg strength, particularly around my knees, or I’ll never manage the hills and rugged terrain of the South Downs Way. And secondly, I need to find some comfortable walking boots that my orthotics fit into properly, so I don’t get blisters.
This second realisation makes my heart sink. Oh no, not shoes….
Shoes have always been my personal nemesis. Practically and emotionally.
I was born with hip dysplasia (DDH). My pelvis is incomplete, crooked and I have legs that are different lengths. I also inherited some ‘unusual’ feet that are different sizes - and a left ankle that turns out a bit like Mary Poppins. I wear orthotics to correct my leg length and knee position so practically speaking, pumps or shoes that are light and tie tightly to my feet are the best.
Emotionally – well, like many women I drool over the sexy heels on display in the LK Bennett window. But shoe shopping just isn’t fun. Unlike Cinderella, the shoe rarely fits on either foot and the need to insert orthotics writes most girl-shoes off the list. When it comes to dressing up girly, I often feel more like the ugly sister than the fabled princess in waiting.
I didn’t mind shoe shopping as a kid. My orthopaedic consultant insisted on good shoes that fastened well to my feet so we always went to Clarks in the Co-op department store in Sheffield. They had animated models of the Animal Kwackers there, who I loved. Like Boots and his silver platforms there was a blingster in young Jill - so I always chose the shiny shoes with gold braiding. Happy memories.
The psychological challenges started for me as a teenager. Wearing stilettos was a marker that you were growing up and at that age I become hyper-conscious of the image that heels = sexy. So I persevered with my heels and fishnets at school (it was the 80s in a school with no uniform) because I wanted to fit in. And I wanted boys to look at me like they did the other girls. In reality heels just accentuated my limp and made me walk badly because they’re less stable.
Yet to this day I still dread dressing up for a night out where women wear sexy high heels with their dresses. My own inability to stand up, let alone walk or dance in them, makes me feel like I'm not quite cutting it as a woman. Of course, this is just my own perception - a story I've invented in my own head. But it’s honestly what goes on in it! Rationally I know it really doesn’t matter and I’m lucky I can walk. But emotions are funny things….
I was recently with a group of girlfriends who were sharing their first childhood memories. Ironically, mine is about shoes. My pre-school playgroup used to streamline the rush for bags and coats at the end of the morning, by sending you to get them according to shoe colour. “Everyone with red shoes. Now everyone with brown shoes.” It’s a happy memory for me because I got to go up on my own. I was the only one in blue shoes and I simply loved that I was different. I was differently-abled and differently-minded.
Thankfully stilettos aren’t the rage along the South Downs Way. So right now it’s about finding boots that can support but not cripple my funny ankles. And getting good orthotics that are fitted properly inside them. Since my 10K I’ve been consulting with a chiropractor and my podiatrist, and I’m being fitted for new orthotics next week.
The more I explore my life with hip dysplasia (DDH) and what goes on in my mind about that, the more I see that we’re all differently-abled. We all have things we’re not good at or a bit paranoid about. And let’s face it, you don’t need to have hip dysplasia to be crap at walking in heels!
My pledge is to try and be more like 3-year-old Jill - newly walking in her blue shoes. Walking differently. And proud of it.
My 10K Walk. Fitting in by Standing Out.
Yesterday I walked my first ever 10K race.
I consider myself lucky. Despite being born with hip dysplasia, as a child I wasn’t bullied much about my walk, or even about my legs with their knobbly knees and surgery scars. Like many people who have a weakness in one area (for me, sports) I found areas that I was good at and could compete in. I focused on being a bit of a swot at school and singing with a girls’ choir (if you’re thinking bookish-choirgirl you’re about right and the dating profile that generated is a whole other blog post!).
The downside of focusing only on what I’m comfortably good at, is that for a long time I avoided situations where I had to hang out with the ‘sporty’ kids. I’d told myself I didn’t fit and would have to ‘compare’ myself with people who were very physically able. So I’d spare my emotions and protect my body by playing it safe and not joining in. I got fairly good at swimming because it’s something you can do easily alone, and I braved aquafit classes because they’re good for the injured. And that was my keep-fit comfort-box ticked.
Yet I have a distinct memory of being at primary school and insisting (to probably mildly-terrified teachers) that I would climb the tall A-frame or get on the beam in PE class, because I was going to do what everyone else was doing. Or at least as close to it as I could. I’d just do it the Jill way. About a year ago I wondered - “where did that little girl go”? It struck me that she had it about right. Of course, at 6 you don’t understand the risks, at 46 you do. But risk and reward go together.
So a year ago I joined a local running club. I’ve never been able to run really because my hips are at very different levels and my knees and ankles are also mildly deformed. But I’d learned from friends that they had a walking group and went along. I remember my first Sunday and how afraid I was. Afraid that I’d physically hurt myself, but even more fearful of the impact on others. What if I was too slow, what if I held others back from pushing themselves? Standing out for all the ‘wrong’ reasons (wrong in my head, not theirs of course).
I consider myself lucky. Because the Bearcats was the perfect running club to do this. I was amongst people of all running and walking abilities who just took me in their stride. Some run marathons; many do not. Some of the walkers used to run until their knees stopped them; some are walking first to build up to running something like a 10K; others are just injured for a week or two so walk instead. Everyone is differently-abled. They encourage me to push myself, just as they push themselves too. I’ve never felt more included, anywhere.
And so yesterday, nearly a year on, I walked my first ever race – the Turks Head 10K fun run. I did some fundraising for a small charity called Steps, but mainly I did it to push myself. And to join in with the sporty kids rather than always watch them.
Just like everyone who was doing their first 10K (or even their fifth!) I had to train to build up my distance and pace. I started walking 4K twice a week and then built from there. Each week I stepped up the distance or the pace and every time I did, my knees or my hips ached more or my neck locked to compensate for the instability of my funny walk.
Yesterday, I woke up with neck pain and a locked left shoulder. OK, so that felt less lucky. Yet I completed the race in just over 1 hour 45 minutes. I was way behind everyone, it started to hurt through the last few kilometres and I’ve had to have my neck clicked by an osteopath today. But I suspect I’m not the only one who’s feeling sore today.
I crossed the finish line to people cheering me, just like everyone else. I did it the Jill way and I fitted in, by standing out. And I loved every minute.