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

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.





‘Considering Disability’ – new academic journal

call for editors_Considering Disability

I am so excited about this new project. I am the Rest of the World Editor for this journal: http://www.missguscoth.co.uk/ghdc/consideringdisability/

We are currently looking for copywriters and proofreaders. As this is a journal that promotes global disability studies, we are very keen on recruiting people with an interdisciplinary approach and an interest in disability studies.

Please contact : consideringdisability.editor@gmail.com for more information or to apply for the position.

Breaking Up With My Right-Hand

I am currently in the process of breaking up with my right hand.

A few years ago, precisely six years ago, I lost function in my hands and fingers. I was an undergraduate at the time, a Literature major, and I was in desperate need of functional hands. How else would I write long essays? Our exams consisted of filling up empty pages with as much intellectual jargon as you could possibly manage. Of course there was also the Multiple Choice component, but that was manageable; it’s really easy to form a circle around a letter, even kindergarteners can do that. Messy circles, but hey, it’s no art class. I barely managed to take my exams, and I requested more time to write. My handwriting was barely readable – but then again, it hardly ever is. It was simply more deformed. Fortunately, my professors were understanding and did not acknowledge the sudden dysfunction that arose. I passed, with a flying (and flawed) blue pen in my hand.

Eventually, I regained function. Things went back to normal. Until a few days ago, when I realized my right hand had re-developed a tremor. Wonderful. Not only does it come at the most inappropriate time, but also, it is one of those tremors that medical terminology labels “Intention Tremor.” Simply put, this type of tremor is at its worst only when you want to use your hand; i.e. voluntary movement. When at rest, it is functional and as good as new. Ironic, no?

I depend on my right hand for nearly everything. My left is nearly non-existent. So, as always, I like to have a back-up plan.

I am currently in the process of training my left hand to become my right. Apparently, this can be done. I looked up the term, because as always, there is a word, which doesn’t adequately describe the complexity of this sudden dramatic intrusion. But enough whining. Here it is:

Ambidextrous. adj

1. equally expert with each hand
2. Informal highly skilled or adept
3. underhanded; deceitful
My favorite definition, is naturally, the third. To be deceitful. Who would I be deceiving?
First off, it seems that one needs to trick their brain, the subconscious, into thinking that the left hand is now the dominant one. I am wearing my watch on my right hand now, hoping that this will help fool my brain into re-adjusting itself. Also, I have to buy writing notebooks, the ones that second graders use to learn cursive. I should be practicing my writing. Also, I have to keep my right hand in my pocket at all times. Because it is no longer visible, I hope to deceive my brain into thinking it does not exist.
I am trying to break this cycle of dependency. This right hand of mine has all the power, and it’s time for us to breakup. This will require determination, because I am absolutely in love with my right hand. She’s the one who does everything for me – eats those juicy steaks, writes those long essays, types insanely quickly on my phone, makes my morning coffee – the list is endless.
But, she can no longer serve me the same. I have to move on. Let’s see if I’ll make it.

My Favorite

I have a best friend. She’s around seven years old, in dog years, that is. In human years, she’s in her forties. Flake is a mixed breed, a hybrid, just like me. She’s also a very shy, awkward dog –a bit like me. And Flake is one hell of a tough dog. At home, we call her “Tough cookie.” Also, a lot like me.Image

I have never actually been able to write about Flake. It’s very intense for me, there is a lot of love there; and a deep bond, a friendship that has grown over the years we have known each other (and of course, we have had our ups and downs). Today, however, something happened. That’s when I realized I need to at least try write about the connection we have. I was walking Flake, and our other dog, Eddie. Eddie is quite a character, and one day I’ll get to writing about him, too. Eddie is nothing like Flake; he is popular, social, extremely good-looking, impatient, a bit selfish and self-absorbed, and well, a bit of a douche. But I love him anyway.

As I was walking them, something happened to Flake’s paw. From where I was standing, I could see that she was in pain. Eddie and I were walking ahead of her (because she has arthritis and struggles to keep up), and I turned around and noticed that she was no longer walking, that her hind leg was stuck in an awkward position, pointing upwards, and she was unable to put it back in place. She looked at me with her big chocolate droplets of eyes and pleaded for help. Eddie, always a handful, thought she was playing, and immediately got into his playful mode. He crouched into his playful wolfish position, a predator ready to attack, and I knew I had to take him back inside before helping Flake.

I looked at Flake, and shouted “Wait right there! Don’t move! Wait.”

She stared back at me, leg stuck mid-air, and froze. I ran back to the house, made sure Eddie was safely inside, and went sprinting back to my best friend.

By the time I reached her, she was in a lot of pain. Granted, it only took me a few minutes to get back to her, but you try having a sharp hammer nail stuck in your hand. I held her leg, carefully examining her paw for the source of the pain. She glanced over her shoulder once, and let out a soft whimper. It must have hurt like hell when I pulled out that hammer nail which was stuck in her paw. But Flake trusted me completely. She could have easily flinched, easily barked at me, easily misunderstood –yet it was a moment of complete trust and surrender.

Of course she showered me with wet kisses after, thanking me. But you see, I had done nothing. It was her who trusted me enough. I realized right then and there that the bond I have with Flake, is a bond like no other. It’s that, that moment, that moment where you know you both trust each other, and that there is mutual, acknowledged faith in the other.

Flake has saved me so many times over the years – I can’t begin to relate every single time this has happened. She’s been there through everything. Long nights of research. She would sigh and pout, look at me like I am the most boring company ever, and just go to sleep, hoping I would join her at some point. At one point, I had breathing/heart problems, and I noticed she had adjusted her sleeping position so that she would sleep closer to my chest. There are nights when I am in pain, and she wakes up seconds before I do, sticks her wet nose in my face, checking that I am still ‘okay.’

I do the same with her. She’s growing older, which means, more sleepless nights for us, and less fun. It means medications at difficult times. It means remaining strong, persevering. We both have to. Me and my MS, and Flake and her arthritis. There are two rules, both of which Flake has taught me. First, above all, do not give way to pain. Second, you must be there for your person, because your person has put their trust in you. It is a form of blind faith, blind trust, that humans have yet to learn. I have learned that people always disappoint, and almost always take advantage of anything remotely related to “blind” faith and/or trust. Rather than take that as a blessing, as a commitment, as something to appreciate and even more importantly, reciprocate, they let you down. It’s taken as a form of weakness to trust. To believe in the other. Dogs don’t do that. Dogs know it is a form of strength to believe in the other. It is a Law of Love that only dogs have mastered. And I continue to learn from them, and especially from Flake (who I will be writing more about).

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.