I found my confidence again through martial arts

I left school around 15 and went to art college, and then I did a foundation degree in fine arts. I couldn’t sit still in school so college suited me better. I went into mixed media, fine art and then portraiture. I even had a fine art exhibition in the Liverpool Biennial 2013.

It was good, but like a lot of artists I ended up flip flopping between various jobs, doing bar work and so on to pay the bills. I was also into fitness from an early age, so I became a personal trainer. I was passionate about it, I loved it, but with self-employment you don't really get a day off. I was working six to seven days a week. It was exhausting.

I ignored my first symptoms of MS

When I was about 34, I had a client who worked as a nurse. I was training her in a private session and she asked me how I was doing. And I said: “Well I’m a bit tired and I've gone a bit numb”. I was thinking it was sciatica from training all the time.

My limbs had gone numb on my left-hand side. It felt like when you have an operation and the anaesthetic hasn't worn off. She said I should get it checked out. But I thought it was nothing, so I forced my way through it. I ignored it.

Then a couple of weeks later, I got a blind spot in my right eye. So I went to the GP who referred me to hospital, where I went through various tests and an MRI scan. I also went onto ‘doctor Google’ and from my research I said to the consultant, “I think it might be MS”, but at first he said I don’t think you do.

Getting a diagnosis

When the same consultant later gave me my MS diagnosis, my family, who were with me, were in shock. But I smiled and said: "I knew it was". I think they were a bit shocked about my response, but a lot of it was down to me not knowing that much about MS and what was involved.

It was more of a shock after he told me that it was incurable. I was thinking, "Oh, my God, I've got a death sentence here." - which I now know it isn't. It was scary. But I think because of the shock, I was in a bit of a giddy state, seeming a bit more cheerful about it than I could have been.

Worsening symptoms

When my symptoms got worse, I developed a lot of spasticity in my legs and then I slowly developed Uhthoff’s phenomenon. It’s like a heat monitor, where if it gets too warm my eyesight gets quite blurred. Once these symptoms came on, it got scary.

I was in shock and, in all honesty, I didn't deal with it. For a while I just carried on as usual, carried on working in the gym.

But I started developing a limp. It was becoming a lot more obvious when I was working out and I was exerting a lot of energy in the gym. So I thought, "I can’t keep this up. How am I going to keep training people when I'm struggling to train myself?" 

I thought it probably wasn’t the wisest thing for me to do, so I ended up leaving the gym. I didn't tell a lot of people why I left. I think it was denial – that was a big factor.

I struggled to accept my MS at first

Then because I struggled with denial and accepting my MS, I ended up seeking some counselling with the Brain Charity because they were based at the hospital. I was trying to get my head around it because I was grieving, in a strange way.

I was questioning my whole identity. It was so new. It was like an unwanted lodger, who had squatter’s rights in my own body.

I thought: "Who am I now? Am I going to be seen as ‘Chris, the guy with the disability’? Does anyone else in my family have it – is it hereditary?" I was asking all these questions.

The ironic thing was the counsellor who I was seeing told me she had MS too. So then I thought this could actually help me. Sometimes it’s been a lonely road, but the counselling was helpful.

Dealing with grief

I started to question life a lot more. When I got the news, I was grieving because the old me had gone and in a strange way a new me was developing. It's a scary thing, the feeling of the unknown, especially with this condition. Nobody knows where it's going to take you.

One day it could be OK, the next day it might not be. So it was a rollercoaster, but I realised I could get through with the right support.

It's been tough but it can be comical as well as tragic at the same time. I’ve learned to laugh at my spasticity now. For example, when I wake up in the morning, my legs start bouncing before I transfer to my wheelchair. So I start singing Cotton Eye Joe, which is my own way of dealing with it, I guess!

I was told it was secondary progressive MS the day before my birthday

I was told it was secondary progressive MS over the phone. My symptoms had gradually deteriorated. I went from slowly walking to using a walker and then I ended up using a wheelchair. But I was still walking at the time. It was my birthday when I was told. So it’s a strange memory. That was five or six years ago.

I wasn’t that shocked to hear my MS had developed to secondary progressive. I knew something was changing in my body, and my mind and heart were telling me something had changed. But I needed that confirmation. The confirmation can bring a bit of peace.

I don't take any DMTs for my MS now. When they stopped working for me, I realised I was going to have to alter my blueprint for how to live.

Some people with progressive MS can access DMT drugs, if their MS is 'active'. Read more.

Challenges now

I feel OK now. I have days where the cold weather sometimes makes me stiff like the Tin Man from Wizard of Oz, when I'm transferring to my chair. And I’ll be bouncing a lot on cold mornings - when I’m singing Cotton Eye Joe. But when it's really warm my body goes like wet spaghetti.

One of the biggest challenges for me is transport. There's probably one or two taxi services in Liverpool that have transport suitable for wheelchair users. Sometimes the services are not available at the times I need them, like at Christmas. So I’m limited.

Not every restaurant or cafe is accessible either, so the basic stuff can be challenging. It can be frustrating. Especially when I’ve made plans with my friends and then suddenly I have to say: I can't go.

I don't want them thinking that I’ve let them down. After a while, people are going to start thinking, ‘what's the point in even asking you when you say no all the time’. I feel bad.

Discovering jujitsu

I ended up putting on quite a lot of weight when I left personal training. Going from doing burpees ( jumps and push ups) to sitting in the chair was quite a change. I was thinking, how am I going to do this now? I wanted to get back to doing some form of activity, but not every gym has access for wheelchair users.

I've always been into self-defence, I liked jujitsu and Krav Maga, an Israeli form of self-defence. I did that for five years. I was really into the training, probably twice a week, for five or six years before I got diagnosed.

You've got to train with your teachers, but once you’re in the ring, you're the one making the decisions, that’s when it matters. I love that about it, too.

A lot of the time when you get diagnosed with a disability, they say try Tai Chi or meditation or yoga or something where you're not expending too much energy. But I’m quite hyperactive and I didn't really want to do gentle Tai Chi. It works for some people, but I thought my attention span wouldn't really focus. I was ready to release some energy.

Searching for a teacher who could train me

I called numerous martial arts clubs, ranging from Japanese jujitsu to Mixed Martial Arts, to Brazilian jiu-jitsu. Most of them said: "We can’t train you. We're just not used to or trained in working with people in a wheelchair."

Peter came out to do a one-to-one course with me at home, a six-week training course and then we went to more solidified lessons. So he’s learning from me and I'm learning from him. We're building the syllabus as we're having our sessions. 

Sometimes there may be a technique and I might say: "Well, this doesn't work, it would be easier from this position." I'm always in the seat position and he's not using the wheelchair, so he's not seeing it from my perspective. It's like a project that we're working on together and I'm the guinea pig.

I’ve been properly training twice a week, in private sessions for nearly two years. He doesn’t have an accessible space, so he trains me in my house. For gradings they generally help me into the dojo (martial arts school), which isn’t fully accessible.

We just carried on and I'm a purple belt now. I'm on way to my black belt. I don’t think anybody has done this in this city using a wheelchair.

They call Japanese jujitsu the chess of martial arts. It’s quite cerebral, so it helps with my brain fog as well as the spasticity in my hands. Having to memorise the techniques and going over them in mind, that’s really helped my cognitive skills.

Building back confidence after becoming a wheelchair user

It’s given me self-confidence again. My confidence was knocked once I was using a wheelchair. For me, it was then that my MS became visible. Plus, I’d gained a lot of weight.

The first day I used a wheelchair, I was worried about how people were going to see me. I think that’s natural. With all sorts of disabilities, and whatever stage people are at, people don't want to be seen as vulnerable, especially men. We have male pride. But we’re all vulnerable at some point, it's part of being human.

I think the thing that helped me with my vulnerability was going back to self-defence. It gave me some confidence back. When I was first diagnosed I felt like I was just existing, I wasn't living. But now I’m living and I have a purpose.

What I’m most proud of

I’m most proud of the achieving my purple belt. Because some people quit once you get halfway. It's like it's given me a bit more light to think: "I can actually reach there, this may be possible." Further down the line I’d like to teach other people if it’s possible.

People probably see me in the dojo and think, this is strange. But if I can inspire any other people who use wheelchairs to take up an activity, I’d want to do that... It doesn't have to be jujitsu, it could be taking up painting or sky diving, anything. I want to say to people, don't quit! If you’re still breathing, keep on going.

I want people to know that your life’s not over when you’re diagnosed with MS. It may change, internally or visibly, but it doesn’t mean everything stops. Your life might be more of a battle and you might change in some ways, but you’re still you.

I want people to see me and think if this guy Chris in his wheelchair is still doing something, then I can do something too. I'm not a genius, I’m just a hyperactive guy sitting in a wheelchair, doing my stuff.