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!

   
 

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. 

   
     

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. 

An Open Letter

I am not writing this to elicit your sympathy. This is not a cry for help. I am not interested in moving you. But, this is an open letter, to the world, to my family, my loved ones, and those I’m yet to meet.

I am a 28 year old who feels like a 60 year old. I look good, though, by society’s standards of “good looks” and a “healthy” appearance. I drive a Blue jeep, and you would never guess that there are days where I struggle with the steering wheel. I’m just about to get my PhD in English Literature, but I have spent years coping with chronic fatigue that has made my research nights incredibly difficult. There were nights when I typed up my thesis using one hand, one eye closed and the other half-peering at the screen. It took double the time and effort. Let’s just say, it was no easy road (but then again, a PhD journey hardly ever is).

But what bothers me? Is it the fact that I have Multiple Sclerosis, a progressive and degenerative disease that affects young adults? A random disease that has no scientifically proven cause? No, not really. MS is a hassle, but I have been living with it for twelve years. We’re pretty much acquainted now. What really annoys me, aggravates me, and leaves me wanting to constantly write about my experience with MS, is the lack of awareness and lack of understanding that I am faced with. People don’t get it. Not because they don’t want to, but because it’s difficult to believe someone with an ‘invisible’ illness. It’s difficult to imagine. And because you don’t see it, it’s hard to understand.

I am tired of people telling me to take vitamins to feel better. I am tired of people telling me to avoid stress and “stay positive.” How do you actually avoid stress? Stress is amongst us. Stress is just a part of life. You can’t help it, no matter how aloof, and even numb you are. We all interact with others, and just that simple interaction can raise ‘stressful’ situations. Should I curl up in bed and hide? I refuse. It’s just not me. I want to live. I want to experience it all. The good, the bad, the stress, and the peace.

People tell me I should try this diet, or go to the gym, or try this herbal potion, or this magic recipe that is bound to cure me. Now, I haven’t actually asked for advice from the general public. I would think that my doctor would know better, so I usually turn to him. But my inability to keep up with people my age, my constant fatigue is sometimes (not always, to be fair), considered ‘boring’, ‘old’ and ‘lazy.’ The fatigue that MS patients suffer from is not your everyday fatigue. It is not how you feel after a sleepless night, or after a long flight from the States to Kuwait, or during the flu, or even from a major hangover. Maybe, it’s all of the above combined, along with a heavy, strained body. And it happens every single day, for no reason at all. It happens randomly, it happens at work, while you’re driving, while you’re out for lunch with a friend, or after you’ve just woken up. No amount of sleep or rest can relieve the fatigue. It’s just there, it’s a part of you – your shadow.

And here’s the thing. I don’t want to be lazy. I don’t want to be old, or boring, or miss out on that gathering, or that party, or be unable to stay awake. But it so happens that sometimes, I am that person. And not by choice. But I have learned to deal with it. I know that sometimes MS fatigue gives me slurred speech. I know that sometimes, I may appear drunk (when I really am far from it). And I just wish people would understand that there is nothing that I can do about it, and that they can’t either. There is no cure. There is nothing I can do in terms of my “lifestyle.” Except, ask for your understanding, and not your advice or sympathy, although I know that it is done out of good intentions. We hate watching those we love suffer. It’s not exactly easy, I know. But sometimes, just listening, just smiling, just saying that you “understand” is more than good enough. It’s genuine and I truly do appreciate it.

A dear friend, also a writer, has urged me to write. It is perhaps the best advice anyone could give me at this stage. And it looks like I’ll keep writing about my experience with MS. Writing eases the pain. It voices what I cannot say out loud. It urges me to share my vulnerabilities and my strengths without the fear of rejection. It’s up to you to choose to read and what you choose to do with the information I hope to provide. This is a lens into my world – and perhaps the world of many others who suffer from invisible illnesses, disabilities, or just pain, be it mental, emotional, or physical.

‘Considering Disability’ – new academic journal

call for editors_Considering Disability

I am so excited about this new project. I am the Rest of the World Editor for this journal: http://www.missguscoth.co.uk/ghdc/consideringdisability/

We are currently looking for copywriters and proofreaders. As this is a journal that promotes global disability studies, we are very keen on recruiting people with an interdisciplinary approach and an interest in disability studies.

Please contact : consideringdisability.editor@gmail.com for more information or to apply for the position.