30

So when I turned thirty, it was supposed to be a big deal. You know, the big 30, you’ve left your roaring twenties behind, and are suddenly, supposedly an adult. No longer “young adult” but actually an adult. But I have always felt like an adult, always behaved like one, even when I was only five, explaining to my mother that we were friends, and she shouldn’t boss me around. Responsibility was pretty much part of my character at a very early age. But I digress.

I was very scared of turning 30. When I was eighteen, I thought I’d never make it to 30. Doctors told me that by the age of thirty, things would pretty much be over. But somehow, I made it to 30, semi-functional, and having learned a few lessons along the way. My friends celebrated my 30th, and I realized that having real friends was the greatest blessing. Friends who accept you for who you are, listen to you, hold you up, support you, and tell you when you’re being a douchebag. I was dealing with a loss that I still cannot understand, cannot seem to accept, because there is no sense in it. And yet, I have realized that sometimes you just lose, without explanations, without reasons. Life and loss are just so intertwined. You cannot control the equation, and you cannot control who stays and who leaves. You can only control your choices, how you deal, how you react, but nothing else.

So I wrote myself a letter, and as private as it is, I will share bits of it on this blog. Amongst the things I have learned are:

You cannot ever really prepare for the future. As daunting and scary as it sounds, you really just have to go with the flow. I always tried to plan things in advance, but it was just stressful and exhausting. Things usually surprise you, outcomes are always different.

You have learned to accept you, finally. You have met critical people, people who couldn’t love themselves, let alone love you, people who saw flaws more than anything. You have finally understood that negativity arises from deep within a person, and you can’t change that, no matter how hard you try. You can’t fix a broken person, you can’t love them hard enough to fix them, and you certainly aren’t a superhero. That’s okay.

When you look in the mirror today, you see fatigued eyes, no matter what you do. Your brain works harder than an average person’s, because with MS, the nerve signals are slowed down, and you have to work double as hard to do a simple task. Motor function is difficult, the brain has to adapt to “normal” functioning by trying harder. It can be draining, and yet, people can’t see it. People will make fun of you, they will criticize you, ask you why you look so sleepy and so dead, and there is never an answer you can provide. And that, too, is okay. Accept that people will not understand, and that’s not their fault, or yours. It just is.

There are those around you who have taught you what love is, and even if they are gone, you know that you learned a lot about life and love, trust, friendship, loyalty, and most importantly, human nature. You also learned to accept that when people walk out, it doesn’t mean you haven’t tried enough. You got to let go, and sometimes, you really just aren’t on the same page as the other person. We can be on the same planet, yet on entirely different wavelengths. Love is simply not enough, if respect is not in the equation. Respect, trust, and non-abuse is most important. Love only grows from that equation.

You are blessed that your mother is still alive, and is your best friend. You learned to cherish days that matter, because you never know when time is up. Because of MS, which people have seen as a curse, you are always living in the moment, cherishing it, savoring it, and enjoying being here, today, with your loved ones, able to see them, to touch them, to hear them, to speak with them. This is a beautiful part of life, to enjoy your loved ones’ companionship. People just let life slip by, and as cliché as it sounds, they don’t stop to think about these moments. They always think they have forever and another day to fix things. But if you don’t fix things today, if you don’t make it right, why are you so certain you’ll have tomorrow? I don’t understand this concept at all. It either is, or isn’t. Life is not meant to be put on hold, and neither is love, nor passion, nor doing the right thing.

So every time I feel down, I know I need to think about these things. I need to reconsider where life has taken me. I wish people could see things from a different perspective, that it really is all about today, that you cannot control the future, that security comes from loving yourself and being able to extend that love to those you WANT to love, those that you want to witness their life’s journey. I am still learning, but I know that I have at least solidified who I am by the age of 30. I look back at my eighteen year old self, and I think, you managed to become who you really wanted to be: an academic who struggles daily, but wouldn’t trade it for the world, a simple person who is grateful to be able to read, to drive, to enjoy the companionship of good people, and loves learning about this condition of being human and surviving it every day.


  

On Mentors

I was invited to speak at the Knowledge Development Seminar (Arab Open University, Kuwait) and gave a lecture about the prevalence of madness in women’s literature. I won’t go into the academic details of the paper, as this blog is almost always personal, rather than academic. I was a bit worried about the lecture, as I have been dealing with the intricacies and inconsistencies of this condition of being human. I have been overwhelmed with exams, marking, research, and struggling with a body that refuses to behave according to my wishes and expectations. My body almost always seems to have a mind of its own, which fascinates me, because isn’t the body supposed to be controlled/regulated by the mind? But enough rambling about me.

I was lucky enough to have my friend, who used to be my professor, Hanan, prepare me for the talk. She would object and say “I didn’t prepare you, you already know it” but the truth of the matter is, every time I talk about theory with Hanan, my mind is refreshed, feels sharper, and I am able to see different sides of the argument. A literature and theory professor, Hanan has always been by my side, talking me through literature, academia, and life itself. I went from being Shahd (her student) to Dr. Shahd, more than a decade later. And I am ever so grateful that she has urged me to participate in class (when I was too shy to speak up) and today, I am able to give lectures on my own. And yet, I had to consult her before actually giving the lecture. We prepared answers for possible questions/attacks that could be presented. The counterarguments of madness, the history of madness, the institutionalization, and how do we even begin to talk about madness?

As for the lecture itself, my discussant was an amazing Professor of literature, Professor Mohiba, who has studied under wonderful theorists and critics (she had the pleasure of being around Michel Foucault himself), and was educated at a time when women were still struggling and fighting for their rights.  She has seen it all, the sixties, the seventies, up until today, where she continues to fight against injustice. She is a passionate, brilliant academic, one that I look up to and admire. I have learned so much from her, just from being around her, listening to her, and I am mesmerized by the amount of passion she has for education, for speaking up, for fighting against all forms of oppression. She reassured me that the talk would be successful, and that the paper had great potential, while simultaneously pointing me in the right direction, gently guiding me, telling me what the argument needs to be developed. Even when someone fired a question that I was unable to answer, Professor Mohiba jumped to the rescue, diving into her years of expertise, and formed a very well-rounded answer. Following her lead, I was able to pick up.

And that is the beauty of real academics, real mentors. They are your friends first and foremost, they want to see you succeed, be the very best version of yourself, and they hold your hand, while still giving you a sense of autonomy and independence. They don’t believe in spoon-feeding, they don’t believe in giving you answers, they don’t believe in making it easier for you. The real academics are the ones who push you, who criticize you, support you, and tell you that you are capable. I have been blessed with having these two very brilliant women in my life, and I have been watching and learning from them, while at the same time developing my own academic identity.

So this post is filled with gratitude. This post is about mentors being our friends, about academia, about women who support other women, about the beauty of education, and mainly, if you’re an academic reading this, I would urge you to do the same, to guide, not to lead, to support, not put down, to create, not destroy, to build, and to watch as your students grow into themselves and become leaders.

And here’s to a new semester, filled with excitement and change!

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. 

   
     

How She Taught me to Read

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

(اقرأ) 

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 

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.

    

Companionship and Commitment: Human-Animal Bond

I am constantly amazed at how people function. We are a total mess of emotions, confusion, and yet, there is always a desire to attain perfection. When perfection is the ideal, you are left constantly unhappy, striving to please, aiming higher, and eventually at a loss. The loss is grand. It is the loss of the self. The loss of the simple things in life. The appreciation of all that you are today. All around me are unsatisfied and unhappy people. And it is not their fault. It is this society, this culture that demands, that expects, that tells you you are falling short, that it’ll never be enough, and worse, that you’ll never be as great as you’re supposed to be. Who gets to say what is perfect, what is great, what is deemed better than others? Why the constant comparison? Self-worth is derived from others, and yet they will always fail you. Why do we keep doing it, then? A bad habit. A dangerous addiction to perfection becomes a disease that eats away at you, until you no longer know how to function otherwise. Until the simple things scare you. Until quietness and stillness is uncomfortable. Until simple faith and trust is difficult to attain. It becomes difficult to believe in others, and in yourself. Where do we go from here?

Flake knows. Flake, my 14 year old Labrador knows better. She’s my best friend, and not just because she’s non-human. Quite frankly, because she’s not “human” she seems to have an advantage. She sees through people. Flake has been my companion for the past eight or nine years. This companionship has taught me a lot about trust, about friendship, and commitment. I am tempted to mention Donna Haraway’s “The Companion Species Manifesto” but this is meant to be a personal, rather than an academic post. (For more information see Haraway’s work on animal-human interaction).

When Flake first arrived, I was hesitant. I did not like animals, simply because I did not understand them. She was a terrified, traumatized creature, who would shake every time I touched her paw. She rejected human interaction, and would eye me carefully. Flake was paranoid, and rightly so. She had been abused in the past. People were cruel, and it seemed I could not change her perception. One day, after a long day at university, I came back home and sat next to her. She moved away. And, despite all logic, I knew I would simply have to speak to her in human language. I told her something along the lines of: “Listen, you and I, we have to be friends. You’re here to stay, and I don’t want to send you away to another family. You’ve had your share of disappointments. I’m not too happy about this commitment, but let’s just try.” And we did try. We ended up spending time with each other, and she ended up taking care of me. I ended up learning about commitment, about going home at a certain time to give her medication (she has arthritis), and waking up early for her walks in the morning. I learned that when someone (human or animal) puts their faith in you, you don’t let them down. You rise up to the challenge, if you are afraid of commitment or responsibilities. You get rewarded immensely: there is so much beauty in giving, in being there for another being, someone other than yourself.

Struggling with Multiple Sclerosis, shuffling feet out of bed, getting dressed with difficulty, working through it all, is no easy task. Add to it having another creature that demands and needs your care. I learned the art of balance. I learned how to communicate without words. When I am in pain, Flake will place her paw on my shoulder and stare at me questioningly. When I cannot get out of bed as early as she would like, Flake pretends to be asleep. She waits. She waits until I can. There is an unspoken agreement. Animal lovers will understand this, while people who don’t have pets will be skeptical. This is a companionship that rejects perfection. We are both struggling. She is growing older, is less capable of jumping around, and I am making peace with my own lack. But I have never felt judged or incompetent, except by humans. The cruelty is strange- human beings are strange. Mark Twain says: “‘Of all the animals, man is the only one that is cruel. He is the only one that inflicts pain for the pleasure of doing it.” And we inflict pain on each other by so many different ways. We ridicule, we mock, we expect perfection, we demand more of each other, and we let go when the pressure is too much.

Below are a few pictures of Flake, because I can’t help it.

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.