What Now? - A Guest Blog by Alex Thompson
What is life like for an able-bodied person? That’s a tricky question. Most able-bodied people wouldn’t be able to tell you, simply because they have nothing to compare it to. However, the easiest way to explain it is that as a person without a disability, the world is made with you in mind. You are the template for design, architecture, furniture, clothing, and much, much more.
So what happens when your life takes a turn unexpectedly? What happens when your health turns upside down? How do you cope? What now?
After university, I decided I wanted to become a paramedic and got a dream job working as an Emergency Medical Technician (EMT) with the South East Coast Ambulance Service. Ambulance staff work a 4-days-on/4-days-off shift pattern. In the other 4 days, I reckoned I could pursue my passion in sport and become a part time athlete. At this point I was participating in a number of sports: running, OCR racing, climbing, swimming, judo, and others. All the while I was getting stronger. My life was coming to a point.
Then, I had my first epileptic seizure. I was rushed to hospital in London where my seizures were controlled by diazepam and sodium valproate. I had 7 seizures that day. I cannot remember much of that event. An oxygen mask, a mans face, voices, the sound of the resus alarm. What I do remember, though, is being loaded into the ambulance and saying to the paramedic:
“I’ve lost my job. I’ve lost my life. What now?”
Unfortunately, I wasn’t wrong. I had to resign my post with the ambulance service. I lost my ability to drive. Living in a small village in the middle of nowhere with no bus service was hard. I had to give up some sports I loved. I wasn’t allowed to travel alone. After seizures I would need someone to feed me, to bathe me, to help me walk. I had to carry spare clothes everywhere I went, in case of a seizure where I would become incontinent. I lost my freedom. I was unemployed and depressed.
Except, little did I know, my decision to get into sport would ultimately be what helped me through this time. For the sports I was able to continue, I adapted. I did my most recent Tough Mudder wearing a protective helmet. I got into cycling due to the loss of my car, and completed a virtual 50k race. I adapted. I told people to stop telling me that my epilepsy might be cured. That wasn’t helpful to me. For me, I had to believe that this was going to be my life now- and I was going to make it work. I decided the quickest way I could regain my independence would be with the help of a service dog, so I set out to find one. After some searching I found the charity, Dog Aid, and I started training my seizure response dog, Scout. Eventually, I found a new job as a sports teacher.
I still had to do all of the things I listed above, but sport made me feel free. Sport recognised my ability. Sport made it ok. I re-labelled myself ‘adaptive athlete’ because this is what I’d done- I’d adapted. I could see this new version of my life emerging.
Unfortunately, we didn’t see the other car coming. It hit the passenger side head on and spun out, smashing into a tree and taking out a telephone line. Wreckage was scattered across the road. The last thing I heard before I hit was my mum scream. I shouted at her to back up out of the road, fearing that we would be hit again. I got out of our car, ready to rush across the road- I knew how to help the other driver if they were injured, and it was my duty to do so. The first step I took, pain.
Since my accident, I have been in a wheelchair and hemiplegic. We are still not sure if my hemiplegia (paralysis or weakness of a limb) is a result of my accident, or grand mal seizure suffered just before. I was incredibly lucky to have Jamie as a supportive friend, who lent my use of his high spec active chair. I have lost feeling in parts of my legs and find it difficult to move. These are uncertain times, as the exact nature of the damage done (and what indeed can be undone) is still revealing itself. But I adopt with this the same thinking I did with my epilepsy- ‘this is my life now, and I’m going to have to adapt to it.’
Both of my conditions have shaken certain areas of my life. Epilepsy took away my ability to drive, and my injury took away my ability to cycle. Epilepsy gave me an invisible disability, but the accident gave me a visible one. I got a service dog to help with my epilepsy, but my injury makes it difficult for me to train with her.
These things are facts, but they are not rules.
Jamie's attitude towards disability has always been utterly infectious. When I was an able-bodied man it was educational and enlightening. It laid the ground work in mind to prepare me for things that were yet to come.
They are opportunities for the phrase ‘what now?’. My brain is constantly spinning with the opportunity of ‘what now’. How do I keep living? How do I get over it? How can I adapt this situation to me? I keep adaptive, I refuse to stop doing the things I love.
I wanted to continue climbing, do I did. I wheeled myself to my local climbing centre and hauled myself up the boulders with my arms, using my knees to stabilise myself. I got to the top and sat, exhausted, feeling a complete sense of achievement. I knew, this was my new test.
I wanted to keep running, so I did. I did 10K in my wheelchair at the Winter Wonder Wheels Super Heroes run for adaptive athletes. It was incredibly hard, but it is just the beginning. It is hard not to compare my time to what I would have achieved if I was running on foot, but I know that that is just another goal for me to smash.
I wanted to play a competitive sport, so I did. I found a local wheelchair rugby club and was thrilled to find I excelled in it. I love everything about it- the speed, the competition, the carnage of a contact sport. I love seeing other players adapt their bodies to play to the best of their ability. I’m new to the game, but I already want to take the sport as far as it will let me. Adaptive sports are amazing tools in rehabilitation, because when you’re on that court, you’re not disabled- you’re a super human. You’re fast, you’re skilled, you’re amazing.
Before I finish, I’d like to point out that the effigy of ‘what now?’ means something different to everyone. Not all disabled people are able to achieve the sort of things I have, or other adaptive athletes, like Jamie. It is not fair to expect all disabled people to rise to the same standard- because all disabilities are different. I am lucky to not have a disability that affects my strength, or my ability to be (relatively) self-reliant. For some people, ‘what now’ is about working out how they are going to get out of bed in the morning without the energy to do so, or how they are going to get their weekly shopping home without the strength the carry it.
My point is, you never expect things like this until it’s you. And if it is you, you’re faced with a simple choice…