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.

    

Thoughts on Character and Damage

This is yet another one of my favorite novels. Here is the link: https://www.goodreads.com/book/show/10746542-the-sense-of-an-ending.

The Sense of an Ending. Even the title captivates. As usual, this is not a book review, but a brief commentary on how the book affects me. Yes, it’s always about the reader. Reader-response theory all the way, baby.

The writer ponders life – a major theme, but he also considers the similarities between life and literature. Of course, literature mimics life, and also distorts it. But I am concerned with our lives. Are they actually better than/worse than fiction? Here’s the quote:

“This was another of our fears: that Life wouldn’t turn out to be like Literature. Look at our parents–were they the stuff of Literature? At best, they might aspire to the condition of onlookers and bystanders, part of a social backdrop against which real, true, important things could happen. Like what? The things Literature was about: Love, sex, morality, friendship, happiness, suffering, betrayal, adultery, good and evil, heroes and villains, guilt and innocence, ambition, power, justice, revolution, war, fathers and sons, mothers and daughters, the individual against society, success and failure, murder, suicide, death, God.”

When I talk to people (and I love talking to people, about the deep, real, raw instances of life), their stories usually share a similar theme: a lack of contentedness. A struggle for happiness. A desire to be happy, fulfilled, but just not being able to reach that state. I have spoken to people my age, people younger, and those who are older. People who are healthy, people who are single, married, divorced, widowed – all sorts of people. And yet when I ask “are you happy?” I am usually met with silence, tears, or shock. The shock comes from my question, I think. We hardly ask. Are you happy? Are you okay? And when people do ask if you’re “okay”, they rarely ever wait for a response. As characters, as people, they have grown accustomed to a life filled with conflict and damage.

Which brings me to the second quotation, also one that has affected me greatly:

“I certainly believe we all suffer damage, one way or another. How could we not,except in a world of perfect parents, siblings, neighbours, companions? And then there is the question on which so much depends, of how we react to the damage: whether we admit it or repress it,and how this affects our dealings with others.Some admit the damage, and try to mitigate it;some spend their lives trying to help others who are damaged; and there are those whose main concern is to avoid further damage to themselves, at whatever cost. And those are the ones who are ruthless, and the ones to be careful of.”

We are all damaged. Some of us beyond repair. Some of us still try to find a sense of lightness. Some try to heal. Others take up therapy, others become healers, while others just disconnect entirely from the world of emotions, to “avoid further damage.” Does it mean they are ruthless, like Barnes states? I disagree. But I do wonder whether damage really lasts a lifetime. Do damaged people bring on further damage to those around them? A friend says we always need to be in a “healthy” environment, away from anyone that is emotionally damaging to our well-being. I haven’t made up my mind. As always, I am listening, observing, and analyzing. My one conclusion so far is that we are all one Psycho Nation. 

A Dose of Beirut

How many times have you found yourself thinking “Carpe diem” is so cliché? When did it lose its effect? I’m certain Horace would’ve never anticipated that the phrase would turn into a way of life. But the truth is, most of us don’t seize the day. We think we’ll be superhuman today and tomorrow. We think we’ll get yet another chance to do everything we want to tomorrow, tomorrow, I love you tomorrow *sings Annie’s musical for you*…. but the way I see it, the cliché here is assuming we’ll still get another tomorrow, and a bunch of tomorrows where everything works out in our favor. Pessimist? I think not. A few months ago, I didn’t want another tomorrow. I was on medication that was meant to help increase my energy, and it did wonders, but left me immensely depressed and horribly sad. I was angry at the world, at my existence, and I was just unmotivated. I didn’t want to get out of bed in the morning, and when I did, I complained about the possibility of yet another day stuck in a suffering body. 

 But this post is supposed to be about positivity and life. One of the beautiful things I have re-discovered is friendship. I met someone who was eager to get to know me and listened to my complaints, my heartbreaks, and my fears. Sara, my good friend, pushed herself out of her comfort zone to help me out of mine. She was surprised when she found out that there were many things I was afraid of doing, many places I hadn’t seen, and that I was struggling to make sense of pain, in all of its forms. So Sara and I both helped each other recover a sense of youth and positivity. We planned a trip to Beirut, Lebanon, and I was worried I would not be able to keep up with her and her friend, who was also traveling with us. I have not been able to keep up with people my age for years. I simply have learned to avoid trying to keep up. I have felt embarrassed and worried, and I used to hate being called a “party pooper” – the person who goes to bed early and cannot go crazy, as crazy as young and healthy people are supposed to be. Sara was an amazing tour guide, a beautiful friend, and a great deal of support. She has been referred to as “too kind” by those around her. That’s where I think people are wrong. When did kindness become a flaw? Because of this supposed excess of kindness, Sara helped me out of my comfort zone. Beirut wasn’t just beautiful because of its scenery, its simplicity, its people, but it was beautiful because it was an experience that reminded me of the ability to live, to move forward, and to have friends who love you just the way you are. Traveling and sight-seeing requires effort, both physical and mental. I was scared I would not be able to do it, but I did (and it was no easy task). But again, my friend was understanding and supportive, she drove most of the time and kept urging me to take naps in the backseat of the car. 

We went to a place called Faraya, where we rented snowmobiles and drove around in snow. Because my hands are not so trustworthy, and my physical stamina can betray me at any given moment, I wasn’t sure I could drive. Sara understood, but then asked me to just try. The magic words: “Just try.”  Cliché? You’d be surprised. I joked about allowing someone with MS to take control of the wheel (or pedals). But I did ‘just try.’ And I loved it. The thrill for me was not simply driving a snowmobile- it was actually being able to do something different, something I usually cannot do. Of course the pain comes afterwards, but as usual, no regrets, no regrets. 



 Here are some pictures of Beirut . And again, people, seize the day. Really. And that’s all for now.





Whispers

It was a very unfortunate day, the day that I realized you were not only out of reach, but you were moving the way ghosts do – we don’t see them, and can’t hear them. You were so used to being as light as air, to your silence echoing around you, that intense ringing in your ears. It could only be deafening to those who did not understand it. And that’s when it hit me: we spoke the same language. And you were a ghost I could see. I saw you so clearly, so forcefully that I wanted to borrow your magical hands to paint you on one of your canvases.

The colors would pour you, all over the white space, that white space that you craved. But those around you, they didn’t understand it. How could someone so strong be simultaneously fragile? You wanted freedom, you wanted power, and they tried to offer it to you, gold-plated with your name on it. They swore you wouldn’t need anything else, you would be safe, you would be secure, and there was nothing to be afraid of. Did they know that while you listened to the silence, you spoke to your demons? You whispered that you needed to stay…to stay yourself. It was slowly withering away, this sense of self, this you that you had been so sure of. There were fragments of your soul, pieces of yourself, memories of your body, left everywhere. It started when you were so young. Betrayal. The closest person to you, your safety net, kicked you out of her womb. And then came the savior, who reminded you that people fall out of love with you too. And it was nothing that you had done, it was not your fault. You realized that things fall apart, no matter how tightly you try to hold them together. You plunged deeper into your world, into depths that they could no longer reach. And yet they were all under the illusion that they built you a home.

But I saw beauty. It was a beauty I had not come across before and it demanded attention. It required a moment of silence – it seemed to have been buried a long time ago. Yet there was that flicker of life in your piercing eyes, and even my impenetrable soul stopped and looked at you – and I just knew. I heard the untold stories, the unspoken fears, and the confusion. And I refrained from touching your hand, afraid that I would touch air, and I would come back to a reality that reminded me of the impossibility of a union with a Ghost.

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.