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.

(Me)mory, Re-learning and Moments

When you’re struggling with illness you fear losing a part of yourself. I am struck by the realization lately that I am not the same person I used to be. A diminishment of self is what I fear, instinctively. I try to hold on to fragments of my life, my memories, the parts that make up this “me.” I keep realizing that no matter how hard I try to document, to remember, to record, I cannot relive any moment. I cannot conjure the parts of my life I have lost and the parts of me I want back.

And here I go with my vagueness. Write it. Write it is what Bishop tells us. I’m including the poem here:

The art of losing isn’t hard to master;

so many things seem filled with the intent to be lost that their loss is no disaster.

Lose something every day. Accept the fluster of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture

I love) I shan’t have lied. It’s evident

the art of losing’s not too hard to master

though it may look like (Write it!) like disaster.

I remember re-learning how to walk. That was an art. The art of losing, the art of mastering it again. The fear that came with trying again, placing one foot before the other, recognizing my toes were mine, my feet had to do their job. I had never imagined I would forget the mechanics of walking. Looking up, holding on to safe and sturdy arms, step by step. And then finally, I was finding my feet, my rhythm, and Mama was there, waiting. Watching, wanting to see if I would make it without falling.

That memory, that image, makes me think of how vulnerable we are. Childlike steps, just like a child takes her first steps as her mother watches, waiting for her at the finish line. And the joy that autonomy brings. Who would’ve thought that moment would repeat itself?

I’m at a vulnerable point in my life. I am trying to preserve parts of myself. I wonder if I’ll re-learn. I am struggling to retain information, and I sometimes feel a disfigurement of my mind is taking place. I just can’t put my finger on it. And yet, here I am, writing this, grateful that I can write it. I’m able to say I am afraid and stay with that. I said the words out loud the other day and while Shame was meddling I recognized the exposure of the bloodiness and messiness of MS. It’s messy. It’s hard to stay in the moment. It’s hard to avoid thinking of the future.

But as always Virginia Woolf saves me. I remember her diary entry in which she says “Stay, the moment. Nobody ever says it enough.”

Pictured below: teaching moment, 2018. Drama class. And is life (and illness) anything but a drama?