(Me)mory, Re-learning and Moments

When you’re struggling with illness you fear losing a part of yourself. I am struck by the realization lately that I am not the same person I used to be. A diminishment of self is what I fear, instinctively. I try to hold on to fragments of my life, my memories, the parts that make up this “me.” I keep realizing that no matter how hard I try to document, to remember, to record, I cannot relive any moment. I cannot conjure the parts of my life I have lost and the parts of me I want back.

And here I go with my vagueness. Write it. Write it is what Bishop tells us. I’m including the poem here:

The art of losing isn’t hard to master;

so many things seem filled with the intent to be lost that their loss is no disaster.

Lose something every day. Accept the fluster of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,

some realms I owned, two rivers, a continent.

I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture

I love) I shan’t have lied. It’s evident

the art of losing’s not too hard to master

though it may look like (Write it!) like disaster.

I remember re-learning how to walk. That was an art. The art of losing, the art of mastering it again. The fear that came with trying again, placing one foot before the other, recognizing my toes were mine, my feet had to do their job. I had never imagined I would forget the mechanics of walking. Looking up, holding on to safe and sturdy arms, step by step. And then finally, I was finding my feet, my rhythm, and Mama was there, waiting. Watching, wanting to see if I would make it without falling.

That memory, that image, makes me think of how vulnerable we are. Childlike steps, just like a child takes her first steps as her mother watches, waiting for her at the finish line. And the joy that autonomy brings. Who would’ve thought that moment would repeat itself?

I’m at a vulnerable point in my life. I am trying to preserve parts of myself. I wonder if I’ll re-learn. I am struggling to retain information, and I sometimes feel a disfigurement of my mind is taking place. I just can’t put my finger on it. And yet, here I am, writing this, grateful that I can write it. I’m able to say I am afraid and stay with that. I said the words out loud the other day and while Shame was meddling I recognized the exposure of the bloodiness and messiness of MS. It’s messy. It’s hard to stay in the moment. It’s hard to avoid thinking of the future.

But as always Virginia Woolf saves me. I remember her diary entry in which she says “Stay, the moment. Nobody ever says it enough.”

Pictured below: teaching moment, 2018. Drama class. And is life (and illness) anything but a drama?

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.