* This is what it looks like on the outside
Photo by Neil Grech
I’ve pondered writing about this topic for years. Inspiration tends to come from unbearable pain, thus the tone always feels implicitly too negative. Finding the courage to write about this does not come easy. The topic is one that discusses one of my most vulnerable sides that although I speak about with people I’m close to, I work hard to hide its physical effects in my everyday life. I’m sure I’m not the only one. Worse still I’m sure that there are several people who live in a lot more pain than I do, but just like me, they go about their daily lives like nothing is wrong with them because it’s difficult to explain that you have a disability that doesn’t show. It’s impossible to understand how much this affects a person’s life, unless you’ve actually experienced it.
I started experiencing pain in my lower back at the age of seven. I’d be in ballet class and our teacher would tell us to do an arabesque (lifting our leg up to the back). I’d be fine lifting my left leg, but I’d feel pinching when I’d lift my right. Since I loved to dance and wanted to be good at it, I’d push through the pain to try and get my leg higher.
When I was about 9 or 10, a ballet teacher who had studied a dancer’s anatomy in detail, noticed that my body didn’t look ‘quite right’ with certain moves that I did. One day she asked me to bend forward and studied my spine, and realised that I had scoliosis. She told me to ask my mum to take me to a doctor to verify and she was right. I’m somewhat lucky because it turns out that it’s a low grade scoliosis, so I could get on with my days, and didn’t need surgery. It did affect me as a dance student because my body always looked ‘lopsided’. Furthermore, my right leg is flexible to the front, whilst my left is flexible to the back but not vice versa, because of the rotation in the spine.
Discovering the cause
I spent my preteen and teenage years visiting an orthopedic surgeon every 6 to 9 months, to see how my spine developed as I grew. The older I got, the worse the pain got, so with every visit I’d ask the doctor what I could do for the pain. Being a kid of about 12, I was pretty much ignored. I think the surgeon couldn’t fathom the notion of a 12 year old living in pain, and probably thought I was exaggerating. One time, possibly when he had enough of my whining, he turned round to me, quite angrily and said that scoliosis does not cause pain, so he doesn’t get why I keep complaining. During another appointment he finally caved and told my mother that we should take an x-ray. He finally discovered the root of the pain, which apparently comes from Spondylolisthesis (it took a while to learn how to pronounce that, I can assure you). In simple terms, one of the vertebrae in my lumbar spine slips in and out of its place, onto the vertebra beneath it. That causes a lot of pressure on the surrounding muscles and nerves, which in turn get inflamed. Moreover, the constant movement tends to eat away the disks in between the vertebrae, so when I had an MRI done in my late twenties, I was told that my bones are like those of a 45 year old and that I had early signs of arthritis.
I spent the rest of my teenage years being told, don’t wear heels, don’t go horse riding, don’t go on boats (because of the impact the movements cause on the spine), DON’T DANCE!! I’d go for my next appointment 9 months later and the doctor would have a change of heart and would tell me, ‘But you’re still so young. I’m sure you want to wear heels like your friends. Just be careful.’ He made me stop dancing for 2 years during the most crucial years of my life, when I most needed that escape and when as a dancer, you’d be working hard to drastically improve your technique. I felt a part of me dying when I couldn’t step into a dance studio. The problem was, dancing or not, I still used to be in a lot of pain most of the time. I couldn’t stand up for longer than half an hour without having to crawl into a ball with tears in my eyes after. God knows how many pain killers I swallowed as I was growing up. But I knew I couldn’t take them forever or let my body get used to them, so I started testing myself, trying to endure the pain and increasing my pain tolerance threshold. Oh I forgot to mention the joys of wearing a corset under my school uniform to help keep my back straight in class. I wanted to burn it, the minute I took it off! And the occasional Voltaren jab, when the pain got too bad, when I couldn’t stand, sit or lay down. Unfortunately the relief only lasts 24 hours.
What the doctor never told me about dance, but my dance teacher helped me figure out eventually, is that by dancing, I was constantly strengthening my core and back muscles, so my muscles could better support my spine. What the doctor did mention, when I was about 15, is that there is surgery that could make it better. They’d bolt the vertebra in place, and I’d have about 9 months of recovery, but I’d probably be able to take dancing up full time after. My instant reply was, ‘Then what the hell are you waiting for?’ To which he retorted, ‘Well even if your mother were to consent, we (the medical professionals) wouldn’t take the risk of going under the knife unless the Lesthesis got to a grade 4 (by which time the spine would be on the verge of snapping I guess).
At 19, I went for my last regular check up. I remember that day very clearly when the doctor told me, “Your spine seems quite stable. You don’t need to come see me anymore, unless you have a terrible fall or accident, which might increase the grade of slippage, or when you’re pregnant, because you won’t be able to handle the pain.” He literally traumatised me for the rest of my life, and I’ve been terrified of what a pregnancy might feel like ever since.
At around 20 or 21, I fell whilst crossing the road and apparently dislocated two bones from my tailbone. At 24 I had the motorcycle accident that sent all my back muscles into spasm. But somehow I always got through it and found my way back to dance. Physiotherapy works wonders. But as I was getting through my masters degree and started working full time office jobs, I started sitting down a lot more which started aggravating the pain in my lower back, and for the first time in my hips. The combination proved to be a nightmare.
I’ve been living in chronic pain for the past 6 years or so. (I’ve lost count.) What this means is that I’m literally in pain every second of the day, including in my sleep. Some days are easier to handle than others. But when it gets bad, I can literally barely move. I end up dragging my right foot behind and limp my way through the day, or I can’t even get out of bed. Throughout my life I was told that swimming is really good for my back. In the summer of 2018 I reached a point where the pain was so bad, I literally couldn’t swim anymore. Even a simple walk became too painful for me to handle. This was also around the time I completely gave up on dance lessons. My family and friends were encouraging me to exercise more because I put on quite a bit of weight, but I could barely get by a normal day with the pain I was in, let alone get through a workout. They could not understand how broken I felt.
At night I’m constantly shifting positions to crack my spine, hip, pelvis and sacroiliac joints for some release, and sleeping in weird positions to try and stretch my tight muscles. I can’t remember the last night I got proper rest without being conscious of the pain I was in. Before I get out of bed in the morning I need to stretch some more. I’m seeing my body constantly change in ways that I don’t like, whilst people around me are constantly going on about their fitness routines, and I know that whatever exercise I try to do causes too much pain. That’s the irony of the situation, the one thing that is meant to make me feel better, became too painful for me to do. From the girl who would spend up to 8 hours in a dance studio and would not be seen in anything but high heels, I became this woman who can barely move and even started turning to sneakers. For most of my life I didn’t even own sneakers, apart from dance ones.
But on the outside, nothing appears to be wrong. I cannot ask people to stand up for me to sit on a bus. I feel embarrassed limping around, whilst making my way from one meeting to another, so I still brave my heels and sway my hips as best I can, whilst getting through my days. I keep a smile on my face on most days, and act like everything is absolutely fine, even on days when the pain is so bad that I can barely concentrate on basic tasks.
When I’m on stage and still do some incredibly simple dance moves, compared to what I’m used to, people can’t understand the effort it takes for me to get through that. I do it because I love it, and because I don’t want to let the dancer in me die, but it comes with great struggle and sacrifice. For Addams Family for example, when Alice collapses after her song, I had to make sure to fall to my left, because the impact would have been too much for my right hip to take. When taking on the role of Mata Hari last October, I was terrified of what belly dancing would do to my back and hip. I hadn’t belly danced in years. I got through it, and I enjoyed it, but it doesn’t mean that my pain suddenly disappeared. I’d pay the price during the day when trying to walk, and having to stop and stretch or crack some bones along the way.
I’ve said time and again that this is an ‘invisible disability’. We often see campaigns that fight for disability rights (and rightly so), but there seems to be stigma around the subject of chronic pain. Perhaps it might be because chronic pain sufferers feel ashamed and try to hide the pain by any means possible. I do feel though, that we’re making our own lives more difficult, because little adjustments in our day to day lives and perhaps at our workplace for example, could make a big difference. But how do we convince those around us, that we’re not just making a fuss, and this pain really is unbearable?
Oh my, I am so sorry that you must endure this level of pain.
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I too live with chronic pain and bone deformation from Sickle Cell Anemia. It has taught me not to be insensitive to others’ pain and to just live each day being happy to be alive.
All The Best
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I have been through very similar story. 2 years ago I had disk replacement surgery and that has saved my bacon. I do have another level which seems to be going. But my daily pain went from 100% to 10%. After going through labour it increased as I think that’s what put pressure on my next spinal level and the vertebrae are starting to slip more regularly. I am not sure if you have researched this option of disc replacement surgery. But it has been life changing- I can do all my sports again! I owe everything to my surgeon as I would not have had my son if I didn’t do that surgery. Good luck with everything- but my advice is more than one doctor’s opinion is needed. The technology in this field is always improving and I know my surgeon does multiple replacements for scoliosis patients. This pain is the worst. Take care