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.