A Definition of Academia

I have always known I wanted to teach. Teaching for me is not a job. It is a lifestyle. It is a commitment, a relationship that provides security, love, and support. When I teach, I give and receive knowledge, and knowledge, for me at least, translates into love. There is an endless pursuit of education, of eye-openers, of moments where something finally clicks. And then you start all over again. A new batch of students. A new course. A new approach. And with each fresh start, the passion is reignited, and we get back into the game. So here’s to a new semester.

Of course, teaching is never just about what degree you have. There are tons of academics who have neglected their basic role in the Humanities – reminding people how to be humane. The Humanities: all about respecting the other, wanting to learn from the other’s perspective, and being open to everything. It’s all about equality, it’s not a hierarchy, and I sometimes wish academics would admit that. It’s not about instilling inferiority complexes, it’s not about intimidation, and it’s not about power. Teaching, if anything, is all about modesty. It’s about being able to excel at maintaining a balance between lecturing and listening, dictating and receiving.  For me, mostly, it’s about human interaction.

Only a few teachers and academics have helped me view teaching as an art. Those remained with me forever, and I continue to ask myself how they would do it so naturally. Sometimes, when I am stuck with a particular theory, or a new course I am afraid to approach, I ask myself, how would Dr. Muzaffar or Dr. Al-Nakib handle it? I constantly shift between being a student and an academic, re-adjusting my mindset accordingly. Dr. Muzaffar taught me how to be a critical thinker, open to receiving criticism from others, and accepting that it’s okay when you really don’t know what you’re doing. And, as an undergraduate who struggled with an invisible disability, Dr. Al-Nakib urged me to keep fighting, to rely on myself, and she accommodated my disability – which, at the time, I only revealed to her.

Academia for me is about a desire to stay alive and functional. It almost got taken away from me, at a very young age. Perhaps that is why I hold on to it. I find value in education and in literature. I start teaching a new group of undergraduates soon, and as always, I can’t wait to see how it plays out.

And that’s all for now.

Confession

Sometimes loss opens your eyes to its counterpart, and there is something to gain. Sometimes we are preoccupied with all that is missing, all that is wrong, and everything that isn’t as beautiful as we wish. Recently, I have gone through something very difficult, and I have felt that the world was a very dark and alienating place. I used to be an optimist, and I still like to think I retain some characteristics of an optimist, but I am no longer the same person I was a few months back. I am aware that we are always evolving, always changing, and we don’t actually remain untouched, untainted and unchanged by the world. I began to fear that as I was starting to physically deteriorate, I would no longer find happiness and/or beauty anywhere.

When reality hits, your views on life, love, and even friendships are shaken. But then I had that moment, as I always do. That one moment, where one missing piece of the puzzle finds its way into your brain, and you realize that there is more in front of you than you could have ever understood. One day, as I was on the couch, feeling physically dead, and nonchalant, that missing puzzle piece spoke to me, and she whispered, “You are an Assistant Professor of literature now. Do you understand what that means?” She asked me why I was so numb, why I didn’t seem to embrace my happy moment. Once a dream, now my reality… this was now a part of my identity – academic identity, at least. The point where numbness and raw emotion meet, the point where they collide, that exact second when someone’s genuine love jolts your senses – something suddenly aches. I realized that it was a deep place within me, an ache that was more grateful than painful, grateful that there was depth somewhere, and I had been touched by it. I had been so alienated from the world, from myself, that I struggled to find meaning and beauty anywhere. But my missing piece reminded me. I think we all have these pieces, floating around, just waiting for us to reach out and claim them.

I think I’ll be ending all my personal posts with this: 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.

Phd Viva

‘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.

Pursuing a PhD and Battling an ‘Invisible Disability’

 

Not all disabilities are the same. Not all disabilities are considered disabilities. People have different definitions. The medical community itself has varying degrees of disability. There are invisible disabilities, permanent disabilities, temporary/reoccurring disabilities, and of course, mental disabilities.

Mine falls under the category of chronic illness, reoccurring and, as I like to call it, random disability. This simply means that it comes and goes, pays me a visit from time to time, and at other times, leaves a lingering effect –a presence that demands to be carried within my body. Multiple Sclerosis is not always visible. Not every MS patient is severely disabled. It is, needless to say, incomprehensibly random. I have had days where I was unable to walk without using a cane, and days where I go for a morning jog with my dogs.

Diagnosed at what you might consider a very “young” age, I was eighteen years old when doctors told me that I might as well prepare for a life of being wheelchair bound, and I could certainly forget about higher education. If I got through my undergraduate degree, I would be very lucky. It would be, again, random. One neurologist told me that I had ten years. A decade. A decade until time would be up. What did this mean? I realized there was no way out. Except, well, to hurry up! Clock was always ticking!

It’s been a very difficult, albeit enjoyable, academic journey. I am currently finalizing a PhD in English, with a focus on madness/mental illness. I was lucky enough to be assigned to a supervisor whose area of interest includes Disability Studies. She introduced me to a world of possibilities, of potential research interests, and to a new space of creativity as well as productivity. Before meeting her, I did not understand that academia could actually accommodate me, that I could actually incorporate the personal with the academic/educational.

Pursuing a PhD when every day is more unpredictable than the one before it can be very nerve-racking. A PhD on its own is not only time-consuming, but an unpredictable journey: you don’t know if you will actually make it. I struggle daily with fatigue, the kind that keeps me trapped in bed. My books and computer almost always seem out of reach. Sometimes, they seem like the enemy –the words are blurry and incomprehensible, I cannot form thoughts, and I am left wondering whether there is room for me in this terrifying world of (able) academics. Everyone is so capable, so ‘able-bodied’, and so smart!

So supervisors need to know. Your supervisor needs to be your ally. It might be uncomfortable at first, with the usual “don’t pity me” concept, and “I can do this.”  It is do-able, a PhD is manageable. But we’re not superhuman. Make sure that you and your supervisors are a team. Tackling a PhD while struggling with a chronic illness and/or disability needs planning and careful calculations (as much as it’s also impossible to plan with an unpredictable illness). And, above all, recognize and believe that there is a space and a place for you and your disability in Academia.

 

Medical Humanities Conference

 

I recently visited Scotland for a conference held at the University of Aberdeen. The conference was entitled ‘Global Medical Humanities.’ I had never really given much thought to the field. Medical Humanities is an interdisciplinary field, combining medicine with literature, psychology, ethics, theology studies, history, etc. I was urged to submit a paper to the conference -my wonderful supervisor insisted that I had something to add, that I had something to say, and that it was worth listening to. I wrote an abstract and was surprised to find that it was accepted. Then the process of actually writing the paper was daunting. I had barely managed to write an abstract. How would I approach the subject that I claimed I could illuminate, when I could barely acknowledge it amongst family and friends? I chose to write about my experience with Multiple Sclerosis, and pose a theoretical framework for an understanding of a ‘hybridized’ disease, if you will. I examined my identity as a woman afflicted by the MonSter- and what that really meant in my culture.

I avoided writing the paper for as long as possible. I piled books of Disability Studies on my desk, but refused to open one. When I finally did write the paper, I was hesitant about going through with it and attending the conference. So I let my sister read it, and I could tell she loved it. She told me that it was great, and I should believe in my voice. Later, I finally mustered the courage to read it out loud to the one person who has been there for me for the past decade, throughout my struggle with MS – my best friend. She listened as I read, and I saw her green eyes glistening with tears. I knew I had managed to say something.

My panel consisted of three others presenters, and amongst them was my supervisor. The panel was called ‘Illness Narratives.’ Finally, I was able to label the type of work I was interested and invested in. After my supervisor gave her paper, it was my turn. I am still wary of speaking in public, although I teach, and I stand in front of haughty students. I still get extremely nervous, and I panic, and sweat, and my voice shakes, and I am suddenly very aware of my surroundings. In general, I have very little to say. I don’t necessarily avoid speaking, but I don’t have the need to voice my thoughts. This poses a problem at times, but that’s another topic altogether.

The paper was well-received. I managed to get more comfortable as I got through the introduction and I found that people were not only listening, but also, they were actively listening, taking notes, and smiling. I was met with a round of applause at the very end, and smiling faces of professors and academics who were touched by my ability to share the personal with the theoretical. One professor thanked me for that, and urged me to continue writing. My supervisor leaned over and told me that the paper was publishable, and that it was a “great paper.”

I was beyond ecstatic. I was finally able to speak, and I had, it seemed, spoken well. Image

Learning to Breathe

I have been silent for awhile. Or perhaps silenced? Either way, I always urge myself, and I will persuade you, to speak up. And if you already do speak up, then raise your voice. One way to raise our voices, is to talk about the manifestations of Multiple Sclerosis in an Arab culture, which continues to relate illness to shame, disability to lack, and strives for perfection in all aspects of life. We are so obsessed with this illusion of perfection, having the perfect job, perfect partner, perfect family, that we sometimes repress our own voices, our desires, and our priorities.

As I have been living with Multiple Sclerosis since I was sixteen, I have grown up with it. It has, somehow, become a part of me. A part of who I am, what I believe in, and what I fight for. And this is a very positive approach- in case you’re thinking “how unfortunate.” It has shed light upon the important things in life. What really matters? And who really matters. Cliché much? We can learn a lot from clichés. But that’s a different story altogether.

A while back, my new medication left me dealing with unusual side effects and problems that previously did not exist. Yet I ignored them, denied them, and continued plowing through. I was on top of the world, exercising vigorously, traveling, and living as MS-free and trouble-free as possible. In return, I also grew detached from reality- that MS, always, finds a way to creep back into my life and remind me of its existence, of its demands, and how we both need to live and work together. Together, rather than against each other. We need to listen to each other. I need to listen to my body’s demands, and my body needs to listen to my emotional needs.

Denial, and shame, both work together to silence us, to repress our needs, desires, and fears. We deny pain. We deny ourselves the right to scream. The right to ask for what we need, who we love, what we dislike, who we are. Shame supports all sorts of repression and encourages us to remain in hiding, remain silenced. We fear bothering others, making them uncomfortable in any way. Illness becomes awkward. Shameful. Bothersome not only for us, but also for those around us- as if it wasn’t already difficult to deal with one’s self, we end up trying to put others at ease, to  make up for the conceived lack we feel. This applies not only to MS, but to any physical or emotional lack, real or imagined, that we feel we need to deny, just to feel accepted and loved.

Finally, after months of denial, and after months of feeling out of breath, I began literally gasping for air. I was not breathing anymore, my oxygen levels had dropped, and my body was screaming in protest. It demanded that I ask for more. It demanded that I take care of myself more, love myself more, ask for my needs to be met, and ask for the oxygen I need. Of course, as always, I relate the body to the mind, the conscious to the unconscious, and I find symbolism and meaning everywhere I look. Oxygen, which we all know is so vital for life, overlooked as merely a chemical element, was suddenly a lot more than that. What did life mean to me? What was my personalized version of Oxygen? Was it family, health, love, friends, academia, and/or my dogs?

My priorities had to be adjusted. Denial and Shame had to be killed off, in order to make room for Oxygen to take center stage. Slowly, I began formulating new understandings of what Oxygen stood for, of happiness, love, friendship, and most importantly, acceptance. Acceptance in all of its forms. I’m still working on finding my emotional and mental Oxygen, as I regain the physical component. So I urge you to really think about yours. Your Oxygen levels matter. Your needs matter. If you haven’t found your Oxygen, start looking, start asking for it. Your voice matters. And you matter. At least I think so.

25 Going on 15

 

Yes, that’s correct. I am twenty-five, by rule of legal documentation and according to my mother. But I do feel, and my doctor seems to think, that I have regressed. I am aging backwards. How’d that happen? Not before I was diagnosed at the age of sixteen, with Multiple Sclerosis. Multiple Sclerosis is a neurological, often disabling condition which affects young adults and seniors. Very rarely are children, or teenagers, diagnosed. In my case, it was an early diagnosis which affected both my private and my public life.

I won’t go into the boring, tedious details of what it means to have MS, the agonizing symptoms, the unpredictability of the course of the disease and its many manifestations. My reaction to the diagnosis was specifically the following: I shrugged my shoulders. Perhaps it was a lack of knowledge. Perhaps it was denial. Or, maybe I was a heroic figure who believed I could take on the world. What was a little bump along the way going to do to my self-image? A few years later, the bump, the obstacle, the annoying rock in my path, grew, and began to make sure I tripped over it at every corner. Literally. I was eighteen years old when I fell flat on my face, right in front of the gates of the American University of Kuwait, where I had decided to apply. How humiliating, right? It’s bad enough when we do fall down. But it wasn’t as simple as that. A professor saw the incident and harassed me with questions and insisted that she file a report. I responded as politely and as neutrally as I possibly could. Finally, I informed her that I was only an applicant, and I had MS. She looked at me, baffled, and asked if she should call an ambulance. I replied with a “Please just let it go.”

That was my first initiation into the public realm of MS. People hardly ever understood. I’d walk into pharmacies, for example to grab so and so medication and would ask if it was bad for MSers. Pharmacists would ogle me and say: “You don’t have MS. That’s for old people.” A friend’s parent once reprimanded me for claiming I was afflicted by the disease, saying it wasn’t nice to lie about such things. At the age of 18, I understood that sometimes, almost always, people did not understand, and I would have to be the one to “just let it go.”

So the years went by, every day was an interesting experience, to say the very least. I learned that having all my senses was a real blessing. I learned to check for the functionality of all my senses the minute I opened my eyes in the morning. I learned to live for today, as cheesy as that sounds, and to shrug my shoulders at the future’s long threatening speech, that very same speech that my neurologist and doctors insisted on replaying: I would never have a “normal” life, because MS steals everything normal from you. No more normal days, no more normal lifestyle.

At twenty-three, I went for an experimental treatment that involved stem cells. The operation, or as I like to call it, “procedure” was a nightmare. A friend laughs heartedly every time I refer to it as a procedure, for it was anything but a simple procedure. It was agonizing, torturous, and did not proceed without killing me. Literally. And I was resurrected, brought back to life, after moments of “seeing the light.” That’s the positive way of putting it. I was reborn. But, like every rebirth, I had to die first. My body, my nerves, my eyesight, my limbs, everything stopped functioning. I sound brave as I relate the events. I was a child, calling out for my mother, begging the doctors to stop. And I am not one to cry, and certainly not one to beg. They did ignore me though, and continued to torture me (of course in my humble view it was torture) until my system reset itself. Or so they claim. I was skeptical, and perhaps still am a bit skeptical.

Today, two years later, I am not “better” nor am I “cured.” I am a teenager all over again. I am hormonal. I am developing acne again. I am angry, I am happy, and I am most definitely moody. I won’t go into other hormonal changes as not to offend anyone, but I can tell you, I’m a teenager in every meaning of the word. Now, maybe my system did not reset itself, maybe I am not better, but I am younger. Physically, not mentally or emotionally- thank the Lord for that — although my mother and sisters would argue that. I could be regressing mentally and emotionally too – but I should hope not, as I would like to be taken seriously. We never take teenagers too seriously, do we?

I can tell you that I am now a changed person. I can see past the obsession and preoccupation most people have with the future and “getting it all right.” I don’t want to get it all, I would just like for it to be “alright.”  Most people I meet are constantly running after something, running away from something, or simply running directionless. It’s the age of running.  Rarely do people stop. To take a breath. To reflect. To ask the inevitable question: What if I can’t run anymore?

I was told that no matter how fast I ran, that no matter how hard I tried, I would eventually fall. So how do you cope with that? I take every day as it is, one step at a time (or sometimes two steps at a time, to beat MS) and I have learned to shrug my shoulders, not helplessly, but to simplify it all. My mother taught me, that in the face of all troubles, in the face of all adversaries, of all disasters, to “simplify things”. Make them smaller. So I continue to simplify and make smaller. Hopefully I don’t shrink to a pocket-size version of me.