Game On (even when it’s off)

With the way my brain works, the neurons seem to disconnect randomly — the neuronal pathways are stifled and unable to process information easily. I have been living with Multiple Sclerosis since the age of eighteen. I can barely remember any other life. There is always a disconnect, even when I try hard to tell my brain to follow my commands — or when my brain is unable to command my body to do what it wants. For as far as I can remember, I wasn’t able to move easily. I wasn’t able to play any sports. I wasn’t able to find a reason to move, other than to go to campus, teach a class, and return home only to lay in bed and gather my energy for the next working day.

Until of course the pandemic hit and life changed. Classes were no longer classes. They were gone. They remained online, which meant I was confined to my chair and desk, with minimal to no human interaction. As I started feeling more depressed and saddened by the loss of my physical classroom, my MS began to get worse, and I was starting to lose track of who I am. All I have ever felt and known was me as a professor. That’s all there was to me. But then I found a new game altogether.

The new game was an experiment that Fadwa introduced me to. Fadwa, ever so alive and passionate, insisted that there had to be something I could fall in love with. There had to be a game I could play, even if I struggled. So she suggested Squash, a game she had been playing for years, and insisted that she could train me. I explained that unlike most abled-bodied people, I would struggle to pick up the rules of the game and to actually generate enough power to hit a ball. And still, she insisted that we had to try.

So I bought my shiny squash shoes (because who doesn’t love fashionable orange shoes) and a racket. We hit the court, and slowly, I began learning how to move. I missed so many times, I grew frustrated, and I even cried out of embarassment and feeling like a failure. I had a proper coach laugh at my inability to memorize movement and coordination, and he actually asked me if I had a brain problem, jokingly. The irony was that I did — I do. I do have a brain problem and coordination is difficult. But I couldn’t say all of this to some stranger who was mocking my slow reflexes.

I told Fadwa that I never wanted to play again because I was failing to be ‘normal’. I told her this even though I am a disability studies scholar and I don’t believe in ‘normal’ and fight against the usage of such ableist terminology. Feeling vulnerable and weak left me unable to think like a scholar. I just felt like a kid who was left waiting for her turn on the bench, never being chosen to play, waiting earnestly for her moment to come.

To summarize the very long and frustrating process of learning how to play squash, I had to unlearn the basic biases we have towards playing any sports. I wasn’t in it to win. I wasn’t in it to prove that I was fast enough or good enough. I had to learn that simply being able to play was enough. I began enjoying the failed moments too because we laughed about it, not mockingly, but at the way my body wanted to break all the rules. I had to speak to my body to stay put, to stay in place, to not rotate as I swung the racket. I had to stay rooted so I could generate enough power.

And that’s when I realized how important it is it to stay put. To stay rooted. To keep your eyes on the ball. I had to remind myself that I was here, within my body, that I wasn’t all up in the air, that I wasn’t always inside my head, connected only to the chaos of my neuronal firings. I had a body too, one I had neglected and forgotten because I had broken up with it many years ago. It had disappointed me, so I had just walked away from it. I needed to learn to stay rooted and connected to my self through connecting with my body again. My hand was still a part of me. My torso was still part of me. And my eyes, as much as I tried to squint them to see the world didn’t have to be perfect; they just had to be. It was an interesting experience for me to be able to see myself as not just disabled, or just an academic, or a disabled academic. It was interesting for me to see myself as in love with squash. I have always been only in love with words and books. Finding a new love has helped me find hope. I can’t say I’m a pro– but I can’t say I want that either.

I was lucky enough to recieve support from famous squash players who wished me a happy birthday. Fadwa reached out to different players and they actually responded. She asked them to support my journey through squash. One of them was a squash player who has MS, Andrea Fjellgaard. She is changing the world just by playing. She believes that MS is all about enjoying the moment, the life that you have today, and one way is to keep playing. This is her story:

Andrea Fjellgaard: Battling MS to becoming a leading squash pro

I am just happy that there’s still some game in me — that the game is still on. I am grateful to Fadwa, to squash, to Andrea Fjellgaard, Amanda Sobhy, Nouran Gohar, Tarek Momen, and others who were kind enough to drop me a beautiful message.

On Arab fiction and trauma

I had fun moderating a talk with Kuwaiti author Layla Alammar. Moderating is never an easy task for me. It requires focus, attention, and a balance between giving the author a chance to talk as much as they want, and making sure the questions are not plain boring. Another problem I face is that my voice fades easily — vocal chord issues with MS and chronic fatigue. I make sure I get as much rest as I can, and yet, it is still so hard. Most of these talks are scheduled at night, when I’m fully out of it. But with Covid, most of these talks are now online — so accessible to me and others. I feel that it’s just easier, being able to sit in a chair and not have to sit up straight and then get up and walk around and pretend to be fully abled-bodied. But that’s a whole other post on its own.

Here’s the link to the talk, hosted by Columbia Global Centers (Amman). What a lovely group of people – they were accommodating and so helpful. Technology tends to fail us, but they did such a good job — and a group of inspiring and young women, too! Behind the scenes, lots of work was done to make sure this ends up as wonderful as it was.