Reflections on ‘Life and Limb’ – Aceptance & Emotional Rollercoasters

As many of my regular readers will know I am currently training as an Occupational Therapist, as part of our final year my class mates and I are undertaking specialist workshops. We were recommended to pick something of interest, something we don’t know a lot about and something that we don’t have too strong an emotional connection to. For my first workshop I chose ‘Amputation’. I’ve met a lot of amputees through wheelchair basketball and a few online through various other adaptive sports. Amputation (like a lot of disabilities) interests me, but I don’t have a massive emotional connection. I signed up to the workshops yesterday and had a look at the pre-reading..

Life and Limb: A true story of tragedy and survival by Jamie Andrew… The photo on the front shows a quadruple amputee (Jamie) hanging off a rock face, I knew then that I would not be able to avoid the ’emotional connection’ issues with this particular case study. I was instantly hooked on this book and I’m 95% of the way through it in just one day.

The year I started high school we were sat in assembly and it was announced that the school was going to get its very own Climbing Wall.

This was long before my diagnosis and before any of my major health issues, I was clumsy and prone to injuries but that was just my ‘normal’, nobody suspected anything besides carelessness and a love of potentially dangerous sports. I was often found climbing trees, trampolined regularly, did gymnastics and dance so it was not surprising I picked up a few joint injuries right?

Soon enough the climbing wall was all finished and naturally I’d signed up to be in the first wave of students to learn to climb. I LOVED it. I loved the challenge, the freedom, the height, the burn in my muscles and the massive sense of achievement from reaching the top. I became a little obsessed, I’d be at the wall 2 or 3 nights a week, I helped out with the other climbing clubs and with any open days the school ran. When that wasn’t enough I joined the local mountaineering club. Age 14 I made the transition from indoor climber to outdoors too. I went to the Peak District with the Ipswich Mountaineering Club (after persuading mum to take up climbing so I’d be allowed to go with them). After taking  my first few steps up onto proper rock I knew it was the start of a lifelong obsession. By the time I was in 6th form I was assistant instructor at my school, Junior representative on the committee for the local mountaineering club and a working my way towards being a very talented trad climber. I decided this would be my life and when it became time to apply for universities I knew I wanted to study outdoor adventure.

This was around the time I started having joint problems, my back hurt all the time and I picked up niggling injuries that just wouldn’t heal. I had my first (of many) traumatic dislocations (falling off the uneven bars at gymnastics). I did go to university but I only lasted 1 semester.

I came home and got a job in an outdoor adventure centre but age 19 I was diagnosed with Hypermobile Ehlers Danlos syndrome, I continued working for a number of years but my duties became more and more restricted. Age 21 I got my first wheelchair and I starting doubting my ability to do the job at all. I decided to retrain and this is where I started my Occupational Therapy journey.

My OT degree has taken me 5 years so far and my life has changed massively. I use a wheelchair some of the time and despite massive improvements in my health I still struggle with daily joint dislocations, subluxations and sprains and a myriad of other symptoms because of my hypermobility. I have had to accept a lot of changes to my life, some of them easier than others. Not being able to climb has been one of the hardest things to deal with, despite not being anywhere near fit enough to climb for about 5 years I kept hold of and maintained all of my climbing gear. So when I was admitted to Royal National Orthopaedic Hospital Stanmore for rehab and my physio asked me what I wanted to do, I said “I want to go rock climbing again”

As an OT student I’ve learnt a lot about goal setting so I knew this would not be an easy or quick goal to achieve. I was a little concerned it wouldn’t be possible at all.. Not only was I struggling with severe joint instability and postural tachycardia but my muscle tone was much lower than I’d like and I was (and still am) reliant on leg braces to walk, how would I fit these into my tight little climbing shoes? What about when I popped a shoulder out of joint mid climb? After 6 months of intensive physiotherapy and some serious planning my boyfriend and I set out to one of the local climbing walls to find out once and for all if I could be a climber again.

Turns out I can… In my own way. I managed 4 short, easy climbs with long rest breaks in-between and a little bit of free climbing over a soft floor!  I managed the rope work (belaying) by attaching the ropes to the floor, bypassing me totally (to protect my spine from the sharp jolt you get if someone falls and you’re on the other end of the rope) then I sat in my wheelchair to rest my legs.

I HURT the next day. I mean really HURT..I actually hurt for a fair few days afterwards. My hands were shredded and blistered and my joints were sore where I’d popped things out on my climbs, on top of that the fatigue was awful. Every time I thought about WHY I felt like that I couldn’t help but smile. To have the ‘luxury’ of going climbing it meant accepting that I would be even more reliant on others than usual until I’d ‘recovered’. After finishing the climbing session I was so tired I needed help to get out of my climbing shoes and back into my regular boots. When we got home I struggled to get out of the car..

Reading this book was like reading my own emotions in someone elses words. I laughed and cried and smiled. I didn’t lose a limb (or 4) but mine certainly don’t work like they used to and I’ve experienced some similar things while learning how to live again. I felt like in some small way I was sharing the climbing experiences, the more I read the more I cried. I had also had to give up some independence in order to achieve my goals (not just climbing). I’d lived the struggle and had to learn that I can’t always achieve my goals on my own, I have to rely on others.

I often receive messages from people telling me that I ‘cope so well’ but at times I don’t really feel like that’s true. I feel just like everyone else, I just do my best. I am well supported by friends and my family and I’ve been very lucky to receive some top-notch medical support (along side some not so good medical input). As I sobbed along to the story of a man I’d never met I felt just like I did a few years ago, struggling to find my feet and not knowing how to be ‘me’ again. No matter how well I’m coping and how much I love my life there will always be times where the realities of my disability journey hit me like a sledgehammer. This was one of them, but you know what? that’s ok. Living with a disability is hard and its ok to have a good cry every once in a while, that doesn’t mean I’m not happy because that certainly isn’t the case. Without my health problems I would probably have never started OT training. OT has already become a massive part of my life and I wouldn’t change it for the world. In some ways I’m glad I had to struggle to get here, its given me a rather unique insight into the lives of people who may one day be my patients.

This blog started out as a way for me to keep track of exciting things I did but it’s fast becoming a valuable resource for a lot of people going through the same challenges I faced (or so I’ve been told). With this post I’ve shared a little bit more of ‘me’ and I hope you enjoy reading it.

I will probably never ice climb in Chamonix but maybe with a lot of hard work a trip to the peak district isn’t totally impossible.  Life throws challenges in the face of everyone and we have to adjust our goals accordingly, that doesn’t make our achievements any less meaningful, sometimes I think it makes them mean more.

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