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.

    

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.

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. 

 

Distance and Voices

I walked through the aisle at the Sultan Center today, trying to find the usual groceries we used to buy. My purchases have changed. My needs have altered. My hand reached for the canned mushrooms, and I heard your voice complaining about freshness.

“Don’t forget your vegetables. Get them fresh. No, no, that one – this one looks a bit discolored.” There. That was definitely your voice speaking to me. Clearly, that was your agitated tone, and the apologetic smile.

Hands fumbled as I examined the greens.

Then someone smiled at me. I wondered what you’d say.

The stranger smiled, and walked away. I thought about your smile. You had smiled endlessly, countless days, and you had still walked away, left me barely standing on my own. I know that life is all about moments. I know that we are doomed, and I know that we make our own realities, and we make choices. Choices are all about constraints and chains. But then again, there are choices that liberate. There are choices that help us rise from the ashes.

Would you do it all over again?

I can’t answer that question, but I’ll ask you. And I know you can read between the lines – so are you still you?

The photo is from I Wrote This For You by Iain Thomas. 

 

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.