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. 

  

 

October 2014: PhD Viva

I was eighteen years old when my neurologist informed me that I would never be able to do anything that my peers would. I was told that I shouldn’t compare myself to people my age, that I was now dealing with a chronic illness, and that I would have to adjust my life and brain settings to accept loss. Losing one’s senses is terrifying. Losing the ability to walk, to see, to hear, to feel – to name a few examples – leaves you very afraid of the future. The uncertainty that comes with living with MS, an unstable and very random disease, can diminish any sense of security that we tend to take for granted. For the past 12 years, the minute I open my eyes in the morning, I look up at the ceiling and realize I’m still here, I can see, and that my legs are functional today.

But I digress. Even though living with MS has been quite scary, it has also given me the desire to live life to the fullest, to live in the moment, in that moment where everything is okay, I am still here, I am still feeling like myself (or the closest version to my old self).

So in 2014, I finally earned my PhD in English Literature. People have congratulated me, as they always do with any success. But I do not feel that being academically successful has been my goal. I merely wanted a chance at pursuing a dream, a goal, and a sense of identity. My PhD is not just academic success, it is a personal one. When I had my Viva, like all other PhD students, I was scared and tense. I was not sure if I could answer the examiners’ questions, if I could prove that my work was good enough, and if I was capable of establishing ‘new grounds’ for academic research. What was worse though, I was not sure if I could handle hours of an oral examination without my body (and brain) shutting down. I informed the examiners and the Disability Office ahead of time that I would require a break. Because I suffer from extreme fatigue, my body chooses to start shutting down at the worst and most unexpected times. And that was exactly what happened during the defense. After about half an hour, I was starting to see blurry examiners, my speech slurred, and my hand announced its tremor. My body needed to rest, to sleep, as soon as possible. And yet there was no escape. I had to keep going, and when the main examiner noticed that I was not feeling well, he asked me if I was okay. Now, if you know me at all, you would know how difficult it is for me to say “No, I’m not.” I despise having to do that, to admit defeat, especially at times where I really have to be okay.

I was given a five minute break. I stepped outside, took a deep breath, and started stretching. Stretching my muscles helps relieve some of the spasticity. Of course I looked very silly, I am certain, and the examiner was surprised to see that that was my idea of a break, rather than a bathroom break. Finally, after hours of going through the endless sections of the thesis, I was informed that I was now Dr. Shahd Alshammari, and that I had passed without any corrections. The external examiner commented that both examiners had noticed how tired I was, and said “despite your deteriorating health, you did well.” After the viva, my body crashed for a week.

And today I am writing this post, months later, realizing that it was never about academic success. It was never about the degree. It was always about life. It was about a chance. Just a chance, a chance to be, to become. I am no longer that eighteen year old who was told to be realistic, that my disease was progressive. I am now a twenty-eight year old who believes my disease is progressive, and being realistic means living despite reality. Sometimes it just takes a bit of dreaming, a dose of optimism perhaps, a belief that there is always that one percent that life can give you a chance, a shot at being. I have realized that it was really never about the destination, and that it has always been all about the journey. I got to travel – and go places, and that has defined my life in endless ways.

Below is the photo I insisted on taking with Professor Abdulrazak, Head of Department at Kent, and Dr. James Watt, of Cambridge.

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.