(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

 

 

Talk on Writing and Literature

I recently gave a talk at the Gulf University for Science and Technology (GUST). The talk was mainly aimed at fostering a love for writing and literature. I spoke about my personal experience with writing poetry, and I interviewed an old colleague and friend of mine, Dhari Buyabes. Dhari has written a novel, and we discussed the significance of writing in English, and how we both dealt with the experience of writing in English as non-native speakers.

The audience was very receptive and I really enjoyed the conversation with the students. I was very happy to see that many Kuwaitis are interested in writing in English, not just Arabic, and that it is no longer viewed as a betrayal of the mother tongue. We also spoke about the healing power of literature and writing, and how writing can be very therapeutic. I love talks like this, talks that aim to inform, educate, and also simply allow us to connect to one another.

As always, I am blessed to be an academic!

   
 

Hikma Talk

This October, for the first time ever, I gave a talk that was both personal and academic. I was asked to speak at an event in Kuwait, by a group called Hikma. Hikma talks are a bit similar to TED talks, and they are meant to be informative, personal, and raise important social issues. I was initially supposed to be discussing Shakespeare and how I teach his work in Kuwait. But, because I was recovering from an MS relapse, and I was using a cane, I had to tell the Hikma group a bit about my personal background, and why I was using the cane. Before I knew it, they asked me whether I would tell this story to the audience. I was very hesitant, and I was not sure if I wanted to tell strangers all about me. I didn’t want to sound like I was inspiring, motivational, or even successful. I didn’t want the talk to be all about “me, me, me.” So I hesitated. And I thought about it for days. I wondered if I had anything to say, and whether people actually cared to hear it. I decided to approach the topic both personally and academically, explaining my journey through academia and with Multiple Sclerosis.

I gave the talk, starting with “I am not here to inspire or motivate you.” I really didn’t want people to think this was a success story or a sob story. So I talked about how we all have choices in life, and I linked that to the study of literature and the humanities. We all have a choice, to be either a hero, villain or a victim. We make choices every day. I choose to be where I am today. I choose to get out of bed every morning. Bad circumstances happen. Life is random and there is no equation you can follow. There are no guarantees. Those who look for logic in a life that does not offer any answers still don’t have it figured out. There is no answer, and there is no one way of living, or one truth. We find this both in literary works and in life. The humanities and literature saved my life, and that is what I said during my talk. I wasn’t exaggerating. Literature gave me purpose and meaning. I was able to learn how to accept imperfections, flaws, and make sense of a world that was chaotic. I learned how to deal with myself, my body, my identity, and others. Any other. Any other that was “different” by society’s standards. In literature, “others” usually find a home. Literature gave me a psychological home, and through it, I was slowly able to accept loss, pain, chaos, and also attempt to help others find the same comfort. I spoke about my experience teaching literature to undergraduates, and how we always have lively discussions in class. Literature connects us across boundaries, borders, and time. We learn to speak without shame, and there is always an open dialogue.

The event was successful, and I was approached by many lovely people. Everyone thanked me for speaking so openly. One woman said she could relate, because she suffers from mental health issues. Another said that her sister also suffered from a disability and was ashamed of her body. I met so many wonderful people that night. And I felt as though I had finally managed to stand up in front of a huge audience and speak about what matters the most to me. I didn’t think I could do it. I was a nervous wreck before the talk, and I felt as though I wasn’t ready. But the truth is, as with everything great, sometimes you’ll feel like you can never be ready. And maybe it just takes that jump. You just jump. I had to. And as always, no regrets, no regrets.

The talk will be available on YouTube with Arabic subtitles. For now, this is a tiny clip of it and some photos. 
  

 

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.

Crash

I am not afraid of death. I have never been afraid of death. Death is a theme in my life, and rebirth is right next to it. For those of you who know me, and if you read my blog at all, you might be aware that I have done the whole “died and came back to life” in the past. *See post on “25 Going on 15” which relates the story of my experiment with Stem cells.* But for the sake of this post, let me just say that I am overwhelmed this time. A month ago, I bought a new car, and I was ecstatic about it. I had worked so hard to purchase and be able to drive this car. And yet a week ago, I crashed into a bus, and my car spun around and hit three different times before finally deciding to stop. I was left with bruises and a bad burn, but I came out of it alive. While the crash was taking place, I was thinking “I’m going to die. Yup, I’m going to die in a car crash. Damn.”

I won’t dwell on the gruesome details, because we all know what accidents are like. What happened after the accident is extraordinary. I had been feeling very down and helpless before the car crash. I was struggling with chronic pain (as usual) and I was starting to feel hopeless. After my crash, everything around me also crashed. People. Relationships. Everything either solidified or disappeared. I was amazed by people’s reactions. There were those that let go and those that stayed. There were many surprises. It was a near-death experience, and it crashed into my face, how much I had misinterpreted and assumed I understood it all. I didn’t. I still don’t.

I am overwhelmed with the way my sisters stood by me, with the way my baby sisters (not so-baby anymore) took care of me. I was touched by my best friend’s presence, leaving her baby to come rushing to the hospital, fearing for my life. I was shocked that my students, who I assumed only considered me their teacher, called me, sent me emails, told me how much they appreciated my existence. I cried when I realized that I had touched my students’ lives, that I had made a difference somehow. I kept repeating to my sister, Abrar, that this was all “too much.” It felt like it was too much. I hadn’t just crashed my car, I had crashed into reality. Love was all around, and not in the way I had expected it, from one person, but rather, it was dispersed and distributed. The intimacy and vulnerability of the accident made those around me more open, more verbal, and it shook my soul. Everyone had something to say. Each person had their own take on it. People either stayed or ran away.

So I guess I’m alive, and it looks like there must be a reason. Only the Universe knows how and why. Meanwhile, I know I have to return all this love and appreciation. So thank you, to everyone who cared. And thank you, to those who put up with my blog ramblings.

    

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.

Thoughts on Character and Damage

This is yet another one of my favorite novels. Here is the link: https://www.goodreads.com/book/show/10746542-the-sense-of-an-ending.

The Sense of an Ending. Even the title captivates. As usual, this is not a book review, but a brief commentary on how the book affects me. Yes, it’s always about the reader. Reader-response theory all the way, baby.

The writer ponders life – a major theme, but he also considers the similarities between life and literature. Of course, literature mimics life, and also distorts it. But I am concerned with our lives. Are they actually better than/worse than fiction? Here’s the quote:

“This was another of our fears: that Life wouldn’t turn out to be like Literature. Look at our parents–were they the stuff of Literature? At best, they might aspire to the condition of onlookers and bystanders, part of a social backdrop against which real, true, important things could happen. Like what? The things Literature was about: Love, sex, morality, friendship, happiness, suffering, betrayal, adultery, good and evil, heroes and villains, guilt and innocence, ambition, power, justice, revolution, war, fathers and sons, mothers and daughters, the individual against society, success and failure, murder, suicide, death, God.”

When I talk to people (and I love talking to people, about the deep, real, raw instances of life), their stories usually share a similar theme: a lack of contentedness. A struggle for happiness. A desire to be happy, fulfilled, but just not being able to reach that state. I have spoken to people my age, people younger, and those who are older. People who are healthy, people who are single, married, divorced, widowed – all sorts of people. And yet when I ask “are you happy?” I am usually met with silence, tears, or shock. The shock comes from my question, I think. We hardly ask. Are you happy? Are you okay? And when people do ask if you’re “okay”, they rarely ever wait for a response. As characters, as people, they have grown accustomed to a life filled with conflict and damage.

Which brings me to the second quotation, also one that has affected me greatly:

“I certainly believe we all suffer damage, one way or another. How could we not,except in a world of perfect parents, siblings, neighbours, companions? And then there is the question on which so much depends, of how we react to the damage: whether we admit it or repress it,and how this affects our dealings with others.Some admit the damage, and try to mitigate it;some spend their lives trying to help others who are damaged; and there are those whose main concern is to avoid further damage to themselves, at whatever cost. And those are the ones who are ruthless, and the ones to be careful of.”

We are all damaged. Some of us beyond repair. Some of us still try to find a sense of lightness. Some try to heal. Others take up therapy, others become healers, while others just disconnect entirely from the world of emotions, to “avoid further damage.” Does it mean they are ruthless, like Barnes states? I disagree. But I do wonder whether damage really lasts a lifetime. Do damaged people bring on further damage to those around them? A friend says we always need to be in a “healthy” environment, away from anyone that is emotionally damaging to our well-being. I haven’t made up my mind. As always, I am listening, observing, and analyzing. My one conclusion so far is that we are all one Psycho Nation.