“Those who forget forget, and those that don’t forget will meet again.”
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.
My mother was the first person who taught me how to read. She realized, at a very early age, that that was all I wanted to do. I would look at billboards and signs and get frustrated that I couldn’t read. I had problems at school, and was considered a bit slower than my peers. I couldn’t master the art of reading or math. My mother devised a plan. She bought a deck of colorful cards and wrote words on them. Simple words. We would sit on the floor together every night and “play” the card game, trying to create meaningful sentences. Each card was a different color.
I don’t remember this, but I am told the first sentence I managed (with her help) to construct was “I can read.” Mom had previously chosen all the words, and I put them together. My mother is a beautiful soul who believes in education, enlightenment, and she gave me the tools I needed to become who I am today: a Professor of Literature. I was born in an oppressive environment where girls weren’t granted equal status and even education was a privilege.
This is what she had to say on raising me, in her own words, in Arabic:
أؤمن باني أتيت لهذا العالم لأختلف عنه ولأثبت بأن المرأه دوماً مكانها بالمقدمه سواسيه مع الرجل وليس بالخلف
وكان ذلك النهار الذي أتى مع قيود سجن العادات والتقاليد السامه، مما جعل طريق الطفله غير آمِن .. كان لا بد من كسر جدران قيود السجن
وكانت بداية انطلاق الثوره التي لم تأتي كباقي الثورات وتخلف ورائها دمار ودكتاتوريه واضطهاد
بل كانت ثوره ناضجه هدفها(الثوره على الذات) وليس على قيود السجن
الطريق كان واحد
نشأت الطفله الصغيره وهي تحلم ليس بامتلاك لعبه باربي تسجنها في سجن الجسد
بل لتحلم بان تتمكن من قهر الظلام بنور القراءه
وكانت اكبر سعاده داعبت قلب الطفله عندما تعلمت الحروف وصرخت بأجمل خبر ولاده سمعته البشرية بكلمات لا أنساها ( I can Read)
تفرح البنات بالمكياج، بالألعاب، بالماديات
وفرحت طفلتي بنور القراءه
وكانت تلك لحظة ولادة الثوره الناجحه وانطلقت الروح حره لحرية الفكر والوعي
تحول كل ظلام الى نور
تحول كل وجع وألم بالجسد الى انتصار …وكيف لا وقد شربت الطفله غذاء الروح
وكان التحرر من قيود الجسد…تعلمت طفلتي ان تكون راضيه وسعيده بصرف النظر عن أي حواجز أو قيود فكريه او اجتماعيه او حتى عقائديه
…نور الوعي واليقظة والفكر المتفتح وقبول المختلف هو الباقي
― Djuna Barnes,
I learned to put my “brave face” on because of you. You taught me to stand still, to walk even when I couldn’t walk, to find myself even when I felt lost.
So today my brave face is on, and I’m learning to do it all over again. Your voice still soothes me, and I thought you should know that my brave face is on, just with a bit more wrinkles. Apparently I grow old, too.