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.

My New Book

My first poetry collection is now available on Amazon. Here is the link: http://www.amazon.com/Love-Loss-Shahd-Alshammari/dp/1631358901/ref=sr_1_1?ie=UTF8&qid=1433966269&sr=8-1&keywords=on+love+and+loss+shahd

I expect that copies will soon be available in Kuwait. I don’t claim to be a poet, or a writer. This is merely an experiment, as all things in life are. Trial and error. Let’s see how it goes!

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. 

Persevere

Key word. Persevere. Fight. Keep going. Go against all odds. You get the picture. 

But when I am left alone with my thoughts, I question it all. What was the point of difference between you and I? Which part of all this perseverance is mine, and which was yours? To fight means there’s a battle to endure. I had my battles. You fought my demons, but never could fight your own. And as much as I like to believe I was a warrior, I could never fight against you or your chosen allies. 

We choose our allies. And now I am left with the ghost of an ally.  

Below: the theme of it all.