Quarantine and my old Film: Chained (2010)

It’s no surprise that we are all in self-isolation and the world is in a state of distress. Kuwait has taken some pretty harsh measures to contain the COVID-19 Virus. I am very grateful and glad that we are trying to contain it.

Meanwhile, I ended up searching for memories, old stuff, work I’ve done that I had forgotten about. I found a short film that I had written and directed back in 2010. A whole decade ago. The film was a representation of disability and societal pressures and discrimination in Kuwait. It was screened at various universities and the Kuwait Cinema Club. We were all English majors at the time and had no budget, no real experience in film-making, and pretty much just wanted to do something together we all felt was needed. We wanted to start the conversation about disability, difference, race, sex, etc.

Looking back, I am able to see that my thinking has changed drastically. The film has many problematic issues and there’s a lot that Disability Studies has helped me figure out. I was dealing with internalized fear and hatred of my own disability and that, I feel, is projected on the main character.

The film (Chained) has English Subtitles and is around 23 minutes. I am linking it here:

(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?

Literary Madness

Literary Madness, my academic monograph, is now available on Amazon US and UK.

Here is the link for scholars of literature and disability studies:

https://www.amazon.co.uk/Literary-Madness-British-Postcolonial-Bedouin/dp/1443897566/ref=sr_1_1?ie=UTF8&qid=1474910925&sr=8-1&keywords=literary+madness+shahd

 

 

Love and Academia

Today someone reminded me of how difficult it was for me during my undergraduate days. My postgraduate days were extremely exhausting and very gloomy at times. There were many days where I thought of giving up on academia. There were times where I couldn’t hold a pen. And yet, despite the struggle, I managed. Today my papers fell out of my briefcase, everywhere, it was a total mess. And as a student of mine bent down to help me gather them, for that one moment, as I looked at her, I had a flashback of myself, as a student, struggling to carry my literature books and dragging myself to class. As we gathered the papers and I thanked her, my mind went back to the past.

It has been only two years since I got my PhD, October 2014. That day was a day where the clock stopped ticking, the viva seemed to go on forever, and I couldn’t bring myself to see the end of the tunnel. But at 3 pm that certain October day, I was finally who I wanted to be, and where I wanted to be. I rememebr being in shock for a few days after. And when I came home, I was met with endless love and celebration. 

People look at me today and assume it was an easy journey. Some people tell me I am too young to be a professor. Some tell me that I wasted years amongst books. But I wouldn’t have it any other way. It was never about the degree. It was simply about love. 

   
     

What Went Right

As this blog remains a personal rather than an academic one (but the personal and the academic are always intertwined for me), I was hesitant to write about this. But here goes. Recently I have suffered from a physical relapse, one that has hindered my ability to walk. I have also developed tremors, a very nasty and frustrating shaking that does not seem to go away. I won’t go into the boring details, but suffice it to say that it has been a challenging month.School started, and faculty had to go back to campus. I was very hesitant about showing up to school with a cane. Yet I did, and it was fine, but of course there had to be one remark that infuriated me. A superior suggested that it was “all in my head” and that I should “toughen up.” At the time, I was struck by the audacity, and was unable to respond. Later, of course, I dealt with the situation. But again, this post isn’t about negativity or what went wrong.

Let’s talk about what went right. I went to the University of Oxford for a conference I had been so excited about. I had spent months waiting for this conference, waiting to visit Oxford, to speak at the conference. I was giving a paper on madness and its potential for subversion. I never imagined it’d be like this – that I would go alone, and that I would go not as functional as I would have hoped. Simply, I was scared. When I voiced my fear to a wonderful person, Dr. Noor, someone with both a scientific background and an interest in Disability Studies, she told me that my fears were “perfectly normal.” A conference, in itself, is nerve-racking, she assured me, and to add to that, a body that is struggling to make it. We had met during an informal meeting to discuss our careers, but we quickly established a strong connection. Dr. Noor and I work from similar angles, similar research frameworks. We consider the ways by which illness and the body is socially constructed, how a sense of identity emerges, and the importance of dialogue between physicians-patients-society. This is a three way conversation which still needs to begin. 

I might be portraying Dr. Noor as simply a colleague, but she is way beyond that. She has helped me on a personal level, and is a friend I have been blessed with. Even when I suggested that I may be afraid of going to Oxford alone, her response was: “But I believe in you, Shahd.” We spoke about how hard it might be, but how I would have to get out of my comfort zone, if I really wanted to attend the conference (which I did)!

I am glad I didn’t give up on it. I was about to. Family and friends told me that there would be many other conferences, better health days. But if you know me at all, you would recall that I do live for the moment. I live for today. Maybe the circumstances weren’t the best, but I learned that every time it feels like it’s almost over, that is the crucial point where you shouldn’t give up. That’s the very moment where you shouldn’t let go.

I have been let go of, very recently. On a personal level, someone I believed would be there for me, there with me (at Oxford and everywhere else), has decided that it was time to move on. Of course this hurts. And it leaves you wondering where you went wrong. What you possibly could’ve said or done, or changed in yourself, to make them stay. At the same time, my walking ability has decided to let go of me, at least for awhile. Perhaps we’re on a break, as I like to think of it.

On the flight, I was recognized by students who made the connection that I was “Dr. Shahd” who teaches English. One of them was especially happy to be sitting next to me, and she was very friendly. When we landed in London, she noticed that I had a cane. The look of horror and shock on her face was something else. She couldn’t help herself and started asking so many questions. I responded and explained that I was okay, but she insisted on knowing “how” ‘why” and if I was “born this way.” That’s a story on its own, but again, suffice it to say that I handled it. 

At the conference, which was on madness, the social construction of illness, mental and physical, and its representations throughout history and literature – we spoke about how normalcy is overrated. I was reminded by a friend’s consolation of me by saying “Walking is so overrated.”

 But here’s the thing, at the conference, amongst academics, I felt like I finally belonged. A professor of Schizophrenia and madness, asked me how I felt about MS. I explained that it was a random disability, and I alternated between the binary of abled/disabled. He called it “Bonkers!” and asked me to “enjoy!” Richard and I became good friends afterwards. He was right to suggest that it was bonkers, and to tell me to enjoy, because this strange state of being human is always enjoyable, in its complexities, its inconsistences, and its nonsense. 

And maybe what went right was that it was okay that everything went “wrong.” 

Here are some images of the trip. 

   
     

Fully Human

What does it mean to be fully human? I have no idea. I am still struggling with that definition. The mind and the body are so intertwined, and then there’s the complicated mess of the heart. Passion, logic, and a failing body – where do we go from there?

There are infinite ways and possibilities of mending a broken body, a broken heart, and even attempts at healing a mind gone mad.

But I am still searching for that “silver lining.” Today I discovered that it seems I must break-up with my body. We are fighting, again, and again. How can I escape it? Meditation, some friends suggest. Find another reality. Leave, disconnect. Find other ways of addressing the pain. And yes, perhaps, this does help. At least there are suggestions. A dear friend drove me around the other day only to keep me company. Fatima is an artist. She told me that she would make sure that I never have to use a boring black cane again – she would make sure it was as rebellious as I was. Fatima re-assured me that there would never be an “end” and that making adjustments, amendments, won’t mean the end of the road. She spoke to me about the importance of colors, colors everywhere. And I guess the “Silver lining” is actually a multitude of colors, you just have to look close enough.

As with gender, race, sexuality,  to understand how able-bodiedness and disability works is to understand what it is to be fully human. Perhaps even partially human. These are all categories that operate to help us label ourselves and others, but mainly, to identify as human (whatever that means).

I have called MS a random disability in the past. I would suggest that the experience of being human is fully random, also. Gender. Sexuality. Love. Lust. Attachment. Commitment. Breakups. Rejections. Nonsense and logic. All of it is random. You simply cannot trust anything around you, and even the closest part of you (that is, your body) can let go. No matter how much we attempt to find order and structure, to instill sense into a mad world, there is nothing consistent but the prevalence of randomness.

And that’s all for now.

Literary Heroism

Literature has saved my life. In more ways than one. Without literature, without my books, my theories, the world would be an abyss, and I would definitely be a bigot. I would be angry and bitter. Recently, I taught a Survey course – it covered major writers of the 15th century all the way to the 18th. Not exactly my area of interest, as I have always been more interested in the Victorian era, and gender/body studies. I also like to think of myself as a Disability Studies scholar (although labels unnerve me) – and it is difficult to claim any sort of “Academic identity.”  Literature has been the Hero of my life, all along. When all else failed, and people let go- Literature has persevered. More often than not, when people admire my perseverance, I am uncomfortable. It was never me- the real hero is Literature.

That said, one of the most rewarding joys of my life is teaching. I think I am always dancing on the inside when I talk about Shakespeare and Milton and Chaucer. When I see my students’ faces as they wonder how Cathy betrayed Heathcliff, I grin back at them. How could she have married Edgar? And why is it that women still choose to be with someone they love less? Can you love two people at the same time? No. There is always a difference in affection, in emotion. Let us analyze. And that is the beauty of literature. It’s all about this condition of being human: confused and imperfect.

But then my identity is so tied up with my disability. I still call it a disability, even though most of the time it is an invisible disability. I have been struggling with Multiple Sclerosis, a progressive neurological illness for the past twelve years. There are good days and bad days. On good days, you’d think I’m making it all up. In class, sometimes, my students turn into blurry blobs. The letters are unreadable, the pages of the book are hard to turn. Everything requires effort. I need to stretch in class, and one can only do this a few times without appearing ridiculously awkward. By the time I am home, I need to recharge for the next day. And so on. This leaves almost no room for socializing. By no means is this meant to be a complaint session- my job is a commitment I am more than happy to maintain.

Commitment in all areas of life can be scary. I understand what a lack of security entails. I do not trust tomorrow, and I am nearly certain I cannot count on my body (that is, the closest part of my ethereal self). Yet, because of this fear of the future, because of the acceptance of the unknown, I have embraced some commitments that I have today. I am committed to teaching, to learning something new as my students are learning key concepts for the first time, and the small difference I make in their lives. When a student tells me about an illness or how she is struggling with Cancer, I tell her to keep going. When she asks why, why if it is inevitable that death will approach, I stare silently before I answer. She is right. Death is inevitable. Loss is inevitable. Even in love, it begins to slowly change with time. We all change, we all “lose.” But that’s one way of looking at it. Change has other dimensions. Even in loss, there is gain. Even in change, there is a newness, a difference, an experience that brings you closer to understanding the depths of life and what it means to be human. We wonder if we can trust each  other, if we can trust life, and the naive answer would be to say “yes.” I say, it’s not necessarily a yes- it is a different type of yes. Someone I trust gave me a new equation, and this equation entails love. A love that saves, a love that heals, a love that transforms, but most importantly a love that accepts change. What is left at the end of the day but soul? Soul in everything. Your soul. Your desire for life. Your desire to try. To live, to love, to work, to discover meaning.

Lately I am struggling with change. I have learned to accommodate my weaknesses, but I am still finding new ways to work around lack. I am the International Editor of a disability journal that considers all different ways of ideal bodies, perfect states of being, health and society, sexuality, and perceptions of normalcy. And yet the irony is, I cannot provide definitions of my own identity, let alone make sense of social and cultural assumptions of disability. I am starting to accept that I may need to use a wheelchair (it is becoming increasingly difficult to walk) and I am wondering what this will do to self-esteem, autonomy and independence. But here’s what I do know: I committed myself to teaching. Whatever happens, I will do that, even if I have to roll into class one day.

And that’s all for now. 

Walk

A step. Two. Here it goes. It looks easy, doesn’t it? You’d think so.

But here it is, this heaviness that drags. This struggle of walking. It feels like walking through mud. Except you’re wearing heavy boots, and you can’t seem to carry yourself. The burden of you. This strange connection between the brain and the body. It is a strange state of being. Being a slave to this body. Who is in charge? They say the mind is superior to the body. We grow up conditioned to believe that your brain is sharp, that your body is just the follower, that you need to work on strengthening your mental skills, that the body is just a vessel. So how is it that the body is in control? It cannot be just a vessel. The body is what you see. Nobody sees your inner core, your self. What you see is what you get. The body is your Passport in life. When you are exiled from your body, do you get to go anywhere else?

And these are, as always, the random ramblings of a confused mind.

What Doesn’t Meet the Eye

Because I choose to identify as a Disability Studies scholar, I am always interested in this elusive entity of pain. Pain and suffering. Society attempts to regulate individual and collective responses to pain and its expression. I am endlessly fascinated by the politics at hand, and wonder how my life has taken an often ambiguous approach to the expression of pain.

As most of my friends and readers know, I was diagnosed with Multiple Sclerosis (MS) a bit before the age of eighteen. Today, nearly twelve years later, I am struggling on a daily basis. I don’t write to communicate constant complaints, but rather, I write for exposure of that which makes people uncomfortable: the continuing presence of pain. To communicate pain is to enter a very complex dialogue. Sometimes people pretend it’s not there. Sometimes, they call you dramatic. And sometimes they choose to ridicule it, through humor, sarcasm, or other methods of “coping” with the reality.

The reality is: it is mine. My body. So how can it be judged, dismissed, or managed? This is a long argument – and this blog remains more personal than academic. And since I believe the two are very interrelated, my post today is about judgment. People still judge a book by its cover. What you see is what you get. After all these centuries of trial and error, people still do it.

With MS, what you see is not always what you get. Yesterday I bought a car. It is a beautiful car. I worked hard for this car. But what most people don’t know is what a car actually means to me. It is a process that involves independence and autonomy. In the past, I have spent months not being able to drive. Someone who used to love me very much drove me around most of the time. Driving was not just taken for granted. Being able to feel the steering wheel, having enough energy to press the brakes, being able to coordinate movement smoothly – this is all part of the process of driving. Most of us drive without thinking of all of these details.

A driver usually drives me to work, because I try to conserve my energy until I arrive to campus. I was almost going to buy a bigger car, a car that would allow me to sit in the backseat while the driver drives. I was very sad and frustrated about this. My very good friends urged me to reconsider. Sara, who I have written about previously in the post “A Dose Called Beirut” told me that I was still young, and a lighter, smoother car might be easier to drive than a jeep. Sara’s support has been endless, simply because she is a believer. She believes in trying, in not letting go of a dream. One of my dreams this year was to buy this car, or any car really, a car that I would drive on my own. Nourah, my good friend, said the same (using her own method of support and humor). She reminded me that I could always use two cars. On bad days, the driver could drive, and on good days, even if they are just a few, I should drive. I should enjoy whatever youth and energy I still have.

As the years go by, as I grow older, I feel that my body is deteriorating. I know that the disease progress is inevitable. On some days, I struggle to walk, to get from my bedroom to the kitchen. The chronic fatigue is eating me up. And there is nothing anyone can do. When I bought a car, I did not buy it simply to buy a car. A few people criticized the choice of car, saying that Kuwait’s streets can only handle a bigger car, a jeep. But it takes more effort. It is even more difficult to get into a jeep. Again, movement. Coordination. Things that you do automatically. I think about all of these things because I am forced to. And like I always say, and try to implement: do what you want today. It’s just today, anyway.

And that’s all for now.

A Walk

There used to be a spot at the Scientific Center, a place we’d meet, and we would grab our morning coffee and I would comment that I liked it “bitter, like me.” Your reply would always be giggles and then offering me a piece of that double chocolate chip cookie, reminding me that sometimes good things are thrust upon us. That was a time when I used to struggle to walk with you, and yet I refused to lean on you. 

Last night I went for a walk, because the walking reminds me of being here. Existential crisis? I shoved my hands in my pockets, taking one step at a time, holding on to myself this time. Grounded in me. It’s starting to become very demanding, this movement, this mobility. Each step takes immense effort and I feel like I’m walking through heaps of snow. But I’m not ready to sit down yet.

Cookies might, in fact, be the best remedy.