The Wheelchair Teen

Around two years ago, during the Summer of 2018, I experienced some trouble regarding weight loss and my self-image:

I mentioned in my previous post that I used to go to Scouts for disabled children when I was younger. Some of the children there were overweight and therefore too heavy to lift, so the staff at Scouts used manual hoist lifts (the one that carries your body in a sort of sling) to carry them from their wheelchairs to their beds at night. When the children were in the lift, I remembered them looking so powerless and weak just swaying in the sling of the lift like a helpless yo-yo at the end of a string. I became terrified of that lift and vowed I would never be too heavy to carry so that I would have to use one.

My fear of the manual hoist lift wasn’t about being overweight: One of the hardest parts about being disabled is having the freedom of movement taken away from you – life can feel like a frustrating prison made out of your own flesh and blood without it. As a disabled person, loss of movement and general helplessness can feel like terrifying ideas. That’s why I started exercising – I’d already lost so much ability over the years that I began clutching to my arm strength and limited leg function for dear life by overworking them every day.

After all, I was never really the type of person to care about the perfect image of females according to society’s expectations and actually used to write activist poetry against that perfect, skinny image of women – For me, it was more about naïvely trying to make things easier for my family when they carried me every day by being lighter, and staying far away from those manual hoist lifts.

My mantra was: “I’m not doing this to lose weight, I’m just doing this to stay healthy,” and I would repeat it to myself whenever it felt like I was taking the exercising a little too far. Staying fit is always a hard thing to do when you’re in a wheelchair all day and spend most of the day sitting. Trying to find ways to make up for not walking or jogging is a common struggle among disabled people. Another reason why it was so easy to get addicted to the freedom of movement exercising awarded me was because it wasn’t something I was used to feeling. When I exercised, I wasn’t powerless or weak, I was stronger than I’d ever felt before. When I was out wheelchair riding, in my mind I was running marathons, and I’d never felt so free.

I would exercise twice a day: once in the morning as soon as I woke up for around forty-five minutes and once after school for half an hour. I would also go out wheelchair riding for around the same amount of time. The exercise after school consisted of me travelling up and down the long distance from my living room to the kitchen either by ‘shuffling’, ‘rowing’ my body along with my hands or crawling (which I didn’t like doing as much because I always ended up with scratches and bruises on my knees and legs but it took much more strength to do. Try crawling from one end of your living room to the other and back again, I think you’ll find that it’s surprisingly difficult to do).

I would do this fifty times one way and then fifty times the other. I would also do a total of a hundred reverse push-ups using my sofa (couch) in-between the ‘laps’. For my morning work-out, I would use an office chair and later followed sitting cardio work-outs on YouTube. When I went out wheelchair-riding, I always made sure to ride on pebble or stone pathways so that the trek would be much harder and more challenging. On weekends, I extended the wheelchair trek to double the amount of time by doing ten laps around the park instead of five. The wheelchair-riding and reverse push-ups were definitely the most challenging exercises of the day.   

My bruises and breathlessness were my rewards every day. I don’t think I realised how addictive something as menial as exercise could be. Whenever I faltered or grew tired, I pictured myself swaying in one of those hoist lifts and would instantly throw myself back into it again. As for drinks, I only ever drank water. I started to get so enthusiastic that I began eating less too. For lunch, I would have a single tortilla wrap with one slice of ham and stay far away from snacks during the day. But then the Summer holiday came and my mother and I travelled to London to stay with my two older sisters in their flat in Stratford. London was where it got really bad.

I still worked out every day and went out in my wheelchair, but going out was different in London – it’s a little less safe than the Netherlands. I remember having to dodge little silver bottles on the pathway when I went out riding so that they wouldn’t pop my wheels. At the time, being the naïve kid I was, I thought they were a part of some mini toy kitchen set. I later discovered that they’re used to hold drugs. I also remember quickly turning away if I saw a group of people standing together, smoking.

The area was much more limited, so I just travelled around in circles a lot – desperate to get forty-five minutes of wheelchair exercise in. I would go further than my sisters told me I could go, exploring areas I had never been to before and then having fun trying to find my way back. I remember once falling out of my wheelchair in an unfamiliar area with no one else around, scared I wouldn’t be able to get back in. I did manage to in the end and simply swore to myself that I wouldn’t tell anyone it happened in case I was banned from travelling by myself and doing my exercises.

I didn’t just go on my wheelchair rounds during the day, when we went out on day trips to museums I would push myself around for the whole trip. I would also do my exercises late at night before I went to sleep so that no one would see. I hate melon and salads, but whenever we went out, I started buying salads instead of the things that I would ordinarily want and forcing them down. I remember ordering a salad for the first time at Nando’s when I went with my great-uncle and mother. It was disgusting, but I ate the whole thing anyway. Back at the flat, I survived on melon slices which my mother would buy in mini tubs from the local store. It felt as if I had melon slices almost every day that holiday.

I’ll never forget the night that my family and I went to go see Mathilda at the theatre. We were taking my grandmother to see the production as a surprise gift and I was extremely excited to go because it would be only my second time seeing a live performance on stage. The night that we went to see it, I only had a few melon slices for dinner. I think that my excuse was that I was still full from lunch which was a lie. Throughout the whole rest of the evening I had a horrible headache and, of course, hunger pangs from my meagre dinner which distracted me from the play.

Even though the production was incredible, all I really remember was how horrible I felt and how I couldn’t stop looking at the girls from a school trip who were seated in the row ahead of us. They were wearing revealing clothes that proudly displayed their flat stomachs to the world. I recall staring at their skinny stomachs and feeling so jealous that all they had to do was walk around all day while I had to work twice as hard to stay fit. I felt so uncomfortable and in pain that I couldn’t wait to get out of that theatre. In the end, that night was one of the worst ones of the holiday.

There was a family gathering (I think that it was at my Uncle’s house) the next Sunday. My family is rather big and we all have Jamaican roots, so family gatherings are often celebrated with lots of deliciously-cooked Jamaican food that you can’t get in the Netherlands. Therefore, I decided to take a break from watching what I ate that day to enjoy all of the food my relatives had made. However, after I was done, I felt like I had failed myself –  that all the hard work I had done up until that point was for nothing. I ended up crying in the bathroom of my Uncle’s house, upset that I had let myself ‘go’. My mother saw me and threatened to ban me from exercising. After that night, I vowed to work even harder to make up for everything that I had eaten that day, and the encounter with my mother only taught me to get better at hiding it.  

But, it all ended during our last day in England. To celebrate our final day there, my family planned to go to Nando’s for dinner. I hadn’t had lunch that day (I think I blamed it on waking up late and having a late breakfast) and had a horrible pain in my stomach. It carried on throughout the entire day, getting worse and worse. When we arrived at Nando’s, I ordered a salad like I had done before, but for some reason, eating made the pain worse.

In the end, I couldn’t eat more than a bite of it and the pain in my stomach was getting even worse. By the time we got home, I was rolling around on my bed from the pain. I spent the whole night clutching my stomach, the intense hunger pangs making it difficult to sleep. That’s when I decided I was done – I’d had enough. I’d never been so hungry before that eating hurt or that it kept me up from sleeping. I was scared, and starting to realise that what I was doing was more harmful than simply ‘staying fit’.

After that, I decided to stop being so worried about what I ate. The next night, we flew to Rome for a week which really helped. Being surrounded by delicious Italian food made it much easier to stop caring about how much I ate. I did still try to work-out in Rome but the bed I had there made it much harder to do so and my family started complaining that I was making too much noise so I ended up stopping altogether and enjoying my holiday. I did go back to exercising twice a day after the holiday but just to work my legs and make up the fact that I don’t walk during the day – I no longer watched what I ate.

What I experienced only lasted around three months and it wasn’t a particularly traumatic experience, but I know that it could have been much worse. I now have slightly more sympathy for people who do end up going further and developing eating disorders, it can be surprisingly easy to fall into the trap of starving oneself. I now know that no matter the reason, whether it seems as if it’s a good or a bad one, skipping meals and exercising too much is wrong. It can be hard for disabled people to stay healthy if they can’t walk but I would highly recommend searching for seated exercises on YouTube. Some of them are extremely good while still being challenging at the same time.

If I’m honest, I’m still scared of those manual hoist lifts and can’t imagine what my life would be like if I lost any more ability in my muscles, but exercising isn’t something I can do as much anymore with my pressure sores and wrist pain which seems to get worse every day. I’m not scared though, I don’t care if I have to crawl along the floor with my face, there are certain things this world is never going to totally take from me and one of them is my freedom of movement. Even being able to slightly wiggle a finger or shake my head from side to side is a victory, and so help me I’ll be shaking it till the day I die. 

That’s all from me. See you next week for a Nugget of Wisdom about staring at those who look different. Bye!