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:

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. 

  

 

Random

I lost my hearing today – only for a few hours, luckily. And I sat thinking about what it must be like to live completely deaf. One adapts. 

We are always so scared of deafness, blindness, paralysis, the deterioration of the body. But everything we are so afraid of is actually not as terrifying when it actually happens. When we lose someone we love, we think we’ll never get out of bed in the morning. When we lose one of our senses, we think we’ll never survive. 

But this survival is a concept that needs a longer post. I need to think about survival, and what it means. I wish there was a course we could all sign up for: Survival 101. And once you pass the course, you’re set for life. Then again, we’re never really set for life. Perhaps that’s the miscalculation right there. It’s all random. 

I probably should make friends with Randomness already. As an individual, I have always been so predictable, so consistent, and yet everything about my body, and how I react to it, is random and inconsistent. 

And that’s all for now. 

October 2014: PhD Viva

I was eighteen years old when my neurologist informed me that I would never be able to do anything that my peers would. I was told that I shouldn’t compare myself to people my age, that I was now dealing with a chronic illness, and that I would have to adjust my life and brain settings to accept loss. Losing one’s senses is terrifying. Losing the ability to walk, to see, to hear, to feel – to name a few examples – leaves you very afraid of the future. The uncertainty that comes with living with MS, an unstable and very random disease, can diminish any sense of security that we tend to take for granted. For the past 12 years, the minute I open my eyes in the morning, I look up at the ceiling and realize I’m still here, I can see, and that my legs are functional today.

But I digress. Even though living with MS has been quite scary, it has also given me the desire to live life to the fullest, to live in the moment, in that moment where everything is okay, I am still here, I am still feeling like myself (or the closest version to my old self).

So in 2014, I finally earned my PhD in English Literature. People have congratulated me, as they always do with any success. But I do not feel that being academically successful has been my goal. I merely wanted a chance at pursuing a dream, a goal, and a sense of identity. My PhD is not just academic success, it is a personal one. When I had my Viva, like all other PhD students, I was scared and tense. I was not sure if I could answer the examiners’ questions, if I could prove that my work was good enough, and if I was capable of establishing ‘new grounds’ for academic research. What was worse though, I was not sure if I could handle hours of an oral examination without my body (and brain) shutting down. I informed the examiners and the Disability Office ahead of time that I would require a break. Because I suffer from extreme fatigue, my body chooses to start shutting down at the worst and most unexpected times. And that was exactly what happened during the defense. After about half an hour, I was starting to see blurry examiners, my speech slurred, and my hand announced its tremor. My body needed to rest, to sleep, as soon as possible. And yet there was no escape. I had to keep going, and when the main examiner noticed that I was not feeling well, he asked me if I was okay. Now, if you know me at all, you would know how difficult it is for me to say “No, I’m not.” I despise having to do that, to admit defeat, especially at times where I really have to be okay.

I was given a five minute break. I stepped outside, took a deep breath, and started stretching. Stretching my muscles helps relieve some of the spasticity. Of course I looked very silly, I am certain, and the examiner was surprised to see that that was my idea of a break, rather than a bathroom break. Finally, after hours of going through the endless sections of the thesis, I was informed that I was now Dr. Shahd Alshammari, and that I had passed without any corrections. The external examiner commented that both examiners had noticed how tired I was, and said “despite your deteriorating health, you did well.” After the viva, my body crashed for a week.

And today I am writing this post, months later, realizing that it was never about academic success. It was never about the degree. It was always about life. It was about a chance. Just a chance, a chance to be, to become. I am no longer that eighteen year old who was told to be realistic, that my disease was progressive. I am now a twenty-eight year old who believes my disease is progressive, and being realistic means living despite reality. Sometimes it just takes a bit of dreaming, a dose of optimism perhaps, a belief that there is always that one percent that life can give you a chance, a shot at being. I have realized that it was really never about the destination, and that it has always been all about the journey. I got to travel – and go places, and that has defined my life in endless ways.

Below is the photo I insisted on taking with Professor Abdulrazak, Head of Department at Kent, and Dr. James Watt, of Cambridge.

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.