(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?

Book Discussion Event

Last night, January 16th, 2017 was a beautiful night, at least in my journey. I was invited for a book discussion with a wonderful group, ‘Book Therapy Kuwait.’ They also invited two other groups/associations, ‘The Divan’ and ‘Kuwait Poets Society.’ I am still speechless and unable to find the words to describe the vibrant energy and creativity that exploded yesterday! I will simply post the videos to speak for themselves. After the book discussion, Kuwait Poets Society had three of their brilliant members perform/read their poetry in response to my book Forget the Words. I was left awe-struck and my jaw dropped at the way they were able to react to the work, the way they reshaped it, re-envisioned it, and produced their own poetic contributions. The three women poets each responded in a different way, each her own twist, and yet, they all chose words/lines from my work that resonated with them. It was mind-blowing, to say the least.

Nada Faris is a published writer and for copyright issues I won’t be posting her rendition of the work, but her work is accessible on http://www.nadafaris.com. Nada is a performance poet and an avid writer. She had the entire audience awe-struck once she finished reading her poem. I was not surprised with Nada’s creativity and ease with words! I have followed her work closely throughout the years and respect her professionalism and loyalty to poetry and its various outputs.

Farah Al-Wugayan, “xxmantras” on social media, is also in the process of publishing her own book. Farah wrote and shared two poems. She responded to “Presence” and “Belong.”  Farah was brilliant in her ability to feel EXACTLY what I was struggling to express, this idea of belonging/not belonging. I sat there, completely mesmerized. As always, her work is magical and heartfelt, pouring poetic jouissance into her audience.

Rawa Majdi, the founder of Kuwait Poets Society, one of the most productive and supportive women I met, also was on stage. She wrote a heartbreaking poem, a response to “A Room Without Light.” I will post both of her readings, of my work, and then her own depiction of the text. Rawa was able to have us all transfixed on her interpretation of the words. As she spoke, I felt pieces of my heart break, and I was moved by her choice of words, her ability to allude to the “madness” in love.

 

All in all, there was so much soul, poetry, and magic that night. That is the beauty of words, of language, of connection. Yesterday we were all brought together because of the love for writing, the love for words, and the endless support we have for each other. Strangers, friends, colleagues, students of mine, poets, readers – everyone was radiating. Blessed. Here’s to a wonderful start to 2017!

Below: Farah ​​

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​​below: Nada Faris 

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Last two videos: Rawa ​​

Finally a quick glimpse from the discussion

Depth and words

I recently experimented with a release of a small prose-poetry book. It doesn’t really have a genre and I was approached by a local publisher (they only publish Arabic books), so I was hesitant and didn’t think the book would receive any attention. Forget the Words is not as close to my heart as On Love and Loss which is still selling rather well on Amazon.

But this is not the point of this post. The book managed to reach a few people’s hearts, on a very intimate level. Firstly, my mother read and understood it, and she was able to see that the book was fragmented because I believe in fragments and inconsistencies. My mother is not one to enjoy English books, which reminds me of Amy Tan’s “Mother Tongue” – in which she asserts that as long as her mother could enjoy her work, then this means she can reach a wider audience.

I received feedback from people I hadn’t  met, sending me messages, emails, letting me know that the book spoke to them, that they were able to connect. Some were previous students of mine, others were new, and then there were those who had simply heard of the book by word of mouth. I am overwhelmed with the amount of citations on Twitter and Instagram! I type in #forget_the_words and random pictures come up with quotes from my book! It is, needless to say, an exhilarating feeling.

When I wrote the book, I was simply angry with words, with life, and I hurled the book at the world. I didn’t care for its success. I haven’t even shared it with all of my colleagues, it is not academic, not scholarly, not what I would term creative fiction. One colleague though, and a beautiful friend of mine, Janet, took the time to read it and reflect upon it. I think that’s what really got me- she actually did reflect on it. She didn’t read the book because I wanted her to read it (at least that’s not what it felt like) and she was able to make the links, the connections. She told me that the words took her to another place, that she was immersed within the dialogue and the symbolism, the metaphors I used. And that’s precisely it, I just hadn’t realized it. Janet helped me put it into words, and I’ll just borrow her analysis here: I wanted those who read it to feel as though the dialogue wasn’t mine, that the Sun and the Moon represented much more, and that human connection and depth is all we could ever live for. I seek depth everywhere. I seek depth in conversations, in friendships and relationships. Like Anais Nin once wrote: “I must be a mermaid, I have no fears of depths and a great fear of shallow living.”

So the book has given me a chance to connect with people on a deeper level. I am grateful to whatever entity is in charge, the Universe, the publisher who took a risk publishing in English rather than Arabic, my friends who read the book, readers who I never met, and those who took the time to think about the words, when I so blatantly asked them to ‘forget the words.’

  

   

       

On this “Self” 

In a society that continues to dictate to us how to live our lives, what to wear, how to be a “good” wife/mother/daughter, how to be an ideal woman, it becomes increasingly difficult to maintain a sense of identity, without being swayed and confused by excessive demands. I grew up in an environment that attempted to control, regulate, and tell me how to be “me.”  It was difficult in a mixed American school, where kids tried to blend, mixing a Kuwaiti culture with American ideals and identities. To be considered “cool” was not easy, and to be branded “cool” did not mean that you were to stay “cool” forever, you had to please the majority, follow a certain code of conduct (or misconduct), and of course, the social class you were born in set the stage for all the rest of the demands. 

Even today, it remains difficult to remain true to who you really are. I know so many people who have lost themselves, and to try and recover yourself is the hardest thing you have to do. You may end up in a relationship where you cannot remember who you were before that person, you may end up working at a job where you change your work ethics, or you may end up trying to please the Beast. The Beast comes in all forms: parent, partner, boss, colleague, an illness, age, anything at all that threatens your sense of well-being, your inner peace. To maintain this “self” is important but we also need to know what exactly is this “self” in question. 

At times, I get overwhelmed with it all. I get comments that confuse me sometimes, for example,  I am told that I have perpetually sleepy/tired eyes. Sometimes it gives off a lazy impression, when it is simply a neurological imbalance. It can be frustrating to say the least. I said this a few days ago to my mother, a woman who has taught me to accept the physical body as lacking, to accept society as constantly critical, and to accept myself as an evolving being, but mainly, she taught me that there are no losses in life that should kill me- except, the loss of self. And the biggest struggle, the struggle of fighting to maintain that self, that is the cause. That is the cause- if we talk about feminism, if we talk about disability rights, identity studies, healthy relationships and boundaries, all of it- it’s the same cause. To remain you, at the end of the day. 

This is a random conversation this morning, her reminding me of what it means to embrace myself, even at the age of thirty, one can never do without Mom’s unconditional love and wisdom.   

  
Now, naturally, the curls are just a metaphor in this post, but as a child it was a pressing issue! 

And that’s all for now. 

Considering Disability Journal

For disability scholars and writers, this is my first introduction to the journal as International Editor. Other well-known figures on our editorial board include Dr Tom Shakespeare, David Bolt, and others. 

Here is the link and please browse other articles as we worked so hard to encompass a variety of voices: 

https://cdjournal.scholasticahq.com/article/840-to-risk-and-to-represent-local-and-global-disability-in-context 

Love and Academia

Today someone reminded me of how difficult it was for me during my undergraduate days. My postgraduate days were extremely exhausting and very gloomy at times. There were many days where I thought of giving up on academia. There were times where I couldn’t hold a pen. And yet, despite the struggle, I managed. Today my papers fell out of my briefcase, everywhere, it was a total mess. And as a student of mine bent down to help me gather them, for that one moment, as I looked at her, I had a flashback of myself, as a student, struggling to carry my literature books and dragging myself to class. As we gathered the papers and I thanked her, my mind went back to the past.

It has been only two years since I got my PhD, October 2014. That day was a day where the clock stopped ticking, the viva seemed to go on forever, and I couldn’t bring myself to see the end of the tunnel. But at 3 pm that certain October day, I was finally who I wanted to be, and where I wanted to be. I rememebr being in shock for a few days after. And when I came home, I was met with endless love and celebration. 

People look at me today and assume it was an easy journey. Some people tell me I am too young to be a professor. Some tell me that I wasted years amongst books. But I wouldn’t have it any other way. It was never about the degree. It was simply about love. 

   
     

Hepta

This is a post about reading and good friends. Or, at least, I think this is the aim of it. I can’t say yet. I am currently writing another book, and my good friend and colleague, Dr. Hend, is editing it. She will be writing the Editor’s note. So this has been an exciting project, but more about that later, or never.

Lately I have been immersed in deep thought, even more than my usual. As summer approaches, my energy levels tend to go down, the heat aggravates me, and my brain cells function slower than “normal.” With MS, we have a certain range of ability, and excessive fatigue tends to limit mobility even more. Naturally, this can be frustrating. And then there was the book. Not my book, which is still in its birthing process, but another book, a book that Hend gave me, after skimming through my poetry collection ‘On Love and Loss’ (available on Amazon) and the new book. Hend gave me an Arabic novel to read, and I remember carrying it around in my bag, buried amidst my exam papers, my Norton Anthology of American Literature, and green and red pens. The novel, which is called ‘Hepta’ or هيبتا has gained recognition and was a massive success upon its publication last year. Written by Egyptian author Mohammad Sadeq, Hepta revolves around a professor’s theory of love, love in its seven stages (which is what the word Hepta means in Ancient Greek, seven). The seven stages, as the professor Osama tells his students, are crucial for the lasting and evolving of a relationship. The stages include the beginning, the meeting, the relationship itself (honeymoon phase and madness phase), awareness phase, the truth/reality phase, the decision/judgement/choice phase, and finally Hepta, the ultimate fulfillment. I have translated the names of the stages, but I can’t do it justice.

Each chapter follows different protagonists’ and their choices, loves, and disappointments, disillusionment, and decisions. What touched me the most is one character’s journey, because I could relate to him. Like all great works of literature, the author managed to get me to say “hey, that’s just like me!” The character is unnamed, as all the characters are only given letters: A, B, C, D.

Basically, the character’s life changes immensely once he is diagnosed with a tumor at the age of 17, and he confesses his love to his high school classmate. She returns the “love” and quickly, the relationship becomes mixed with puppy love and pity love. He is left paralyzed, which changes the direction that the couple’s relationship takes. His girlfriend, being young, naive, and too innocent for a life-altering event, cannot handle it, and leaves. This is the “sad” part, but he soon realizes that love is not a need, and that people are not meant to be crutches. I won’t go into the interesting epiphanies he has, but the point is, as he evolves, so does his understanding of life and love. His disability features as part of the narrative, which was really nice to see, because most works of Arabic fiction are still hesitant to focus on a “disabled hero.”  As a Disability Studies scholar, I was on the lookout for different ideas of shame, cultural stereotypes about disability and normalcy. The character attempts to hide his disability, and does not voice it to his subsequent lovers, out of a fear of being judged, left behind. And that I can also relate to. Sometimes, people stop seeing past the disability, once it’s put out there. There is a massive fear or a crippling worry about what this disability means, how it can affect me, and if it will affect THEM (which is the funny and ironic part). From my experience, people are usually uncomfortable with disability and lack because they are not sure how to react, what they are meant to say, do, and what this means when dealing with me intimately or in a professional work environment. Ironically, I end up taking care of their fears, their lack of comfort, and try to put them at ease.

The novel’s ending left me completely shocked, and I won’t ruin it, but I picked up the phone and told Hend how much I loved it, and how grateful I was that she pushed me to read it. It was written in Arabic and colloquial Egyptian, which was extremely difficult for me to read, and I ended up having to read it out loud. I carried it with me today to work, to give it back to Hend, because I know, like most book lovers, we make sure that the book is returned in one piece. But Hend wouldn’t have it, and asked me to keep her copy. Her copy, with its notes, its highlighted passages- evidence that this is a novel that has touched her, and now it has been passed on to me, I folded its pages, and I am writing this post about it. Sometimes it takes a friend (Dr. Hend) and another friend (Hepta) to make you think about how literature still saves lives. The book made me think there are still many undiscovered phases of life and love, and many different selves of mine that I haven’t found yet.

Below: from the text itself.    
       

Women’s Day

International Women’s Day. A day that we celebrate, a day that is still yet to receive significant exposure. Today we think about how far we’ve come, about what still needs to be done to achieve gender equality, parity, and how we can further this agenda of women’s rights. I won’t go into the sociopolitical issues at hand, because this blog remains a personal one, but I do want to bring up a few ideas that crossed my mind.

Around me, there are beautiful, brave, strong women to celebrate. There are fighters, there are mothers, daughters, students, friends, colleagues- you name it. Each one is fighting a battle of her own. And perhaps it’s important to mention that Feminism is NOT a hatred of men, it is not us against them. At a gender parity forum today, a couple of academics and myself raised the fact that women can be hostile – they can wage wars among themselves. There is a division even between women, according to religion, social class, sect, economic position, etc.

In class the other day, I asked my students to work in pairs. I trusted that they would choose their partners efficiently, and that there would be no issues. By the time I looked up from my book, I asked if everyone had a partner. Everyone nodded and voiced “Yes.” Except for one girl. One girl who remains invisible to the rest. I’ll call her Britney, for anonymity’s sake. Britney has a mental disability, as well as a physical one. She is slightly slower than the rest, but works very hard to keep up. In fact, she tends to be the only one who reads the text before class. And yet, Britney is isolated, not spoken to. My students are adults, and yet I was suddenly reminded of how mean kids tend to be. Being picked last for the soccer team, or not being picked at all. I was reminded of how I have felt left behind way too many times in school. The utter humiliation she felt while she raised her hand to say “Me. I don’t have a partner” came crushing onto me. Some girls, unfortunately, giggled in the background. I don’t understand it and will not attempt to unravel this behavior. My reaction was: “Great. Then I’ll be your partner, Britney.” She beamed with pride. One student laughed and complained that that wasn’t “fair.”  I simply shrugged it off.

What’s not fair is the way our society insists on divisions, separations. On sexism AND ableism. What’s not fair is how we want to empower women, but continue to disempower those who are at a disadvantage in one way or another. So my pledge for today, my gender parity pledge is to continue to support those that need a helping hand. I believe it is a cycle. I was supported by wonderful and kind academics when I was an undergraduate, and today, I aim to do the same, to pay it forward.

So happy women’s day, but also – here’s to doing better.

   
     

30

So when I turned thirty, it was supposed to be a big deal. You know, the big 30, you’ve left your roaring twenties behind, and are suddenly, supposedly an adult. No longer “young adult” but actually an adult. But I have always felt like an adult, always behaved like one, even when I was only five, explaining to my mother that we were friends, and she shouldn’t boss me around. Responsibility was pretty much part of my character at a very early age. But I digress.

I was very scared of turning 30. When I was eighteen, I thought I’d never make it to 30. Doctors told me that by the age of thirty, things would pretty much be over. But somehow, I made it to 30, semi-functional, and having learned a few lessons along the way. My friends celebrated my 30th, and I realized that having real friends was the greatest blessing. Friends who accept you for who you are, listen to you, hold you up, support you, and tell you when you’re being a douchebag. I was dealing with a loss that I still cannot understand, cannot seem to accept, because there is no sense in it. And yet, I have realized that sometimes you just lose, without explanations, without reasons. Life and loss are just so intertwined. You cannot control the equation, and you cannot control who stays and who leaves. You can only control your choices, how you deal, how you react, but nothing else.

So I wrote myself a letter, and as private as it is, I will share bits of it on this blog. Amongst the things I have learned are:

You cannot ever really prepare for the future. As daunting and scary as it sounds, you really just have to go with the flow. I always tried to plan things in advance, but it was just stressful and exhausting. Things usually surprise you, outcomes are always different.

You have learned to accept you, finally. You have met critical people, people who couldn’t love themselves, let alone love you, people who saw flaws more than anything. You have finally understood that negativity arises from deep within a person, and you can’t change that, no matter how hard you try. You can’t fix a broken person, you can’t love them hard enough to fix them, and you certainly aren’t a superhero. That’s okay.

When you look in the mirror today, you see fatigued eyes, no matter what you do. Your brain works harder than an average person’s, because with MS, the nerve signals are slowed down, and you have to work double as hard to do a simple task. Motor function is difficult, the brain has to adapt to “normal” functioning by trying harder. It can be draining, and yet, people can’t see it. People will make fun of you, they will criticize you, ask you why you look so sleepy and so dead, and there is never an answer you can provide. And that, too, is okay. Accept that people will not understand, and that’s not their fault, or yours. It just is.

There are those around you who have taught you what love is, and even if they are gone, you know that you learned a lot about life and love, trust, friendship, loyalty, and most importantly, human nature. You also learned to accept that when people walk out, it doesn’t mean you haven’t tried enough. You got to let go, and sometimes, you really just aren’t on the same page as the other person. We can be on the same planet, yet on entirely different wavelengths. Love is simply not enough, if respect is not in the equation. Respect, trust, and non-abuse is most important. Love only grows from that equation.

You are blessed that your mother is still alive, and is your best friend. You learned to cherish days that matter, because you never know when time is up. Because of MS, which people have seen as a curse, you are always living in the moment, cherishing it, savoring it, and enjoying being here, today, with your loved ones, able to see them, to touch them, to hear them, to speak with them. This is a beautiful part of life, to enjoy your loved ones’ companionship. People just let life slip by, and as cliché as it sounds, they don’t stop to think about these moments. They always think they have forever and another day to fix things. But if you don’t fix things today, if you don’t make it right, why are you so certain you’ll have tomorrow? I don’t understand this concept at all. It either is, or isn’t. Life is not meant to be put on hold, and neither is love, nor passion, nor doing the right thing.

So every time I feel down, I know I need to think about these things. I need to reconsider where life has taken me. I wish people could see things from a different perspective, that it really is all about today, that you cannot control the future, that security comes from loving yourself and being able to extend that love to those you WANT to love, those that you want to witness their life’s journey. I am still learning, but I know that I have at least solidified who I am by the age of 30. I look back at my eighteen year old self, and I think, you managed to become who you really wanted to be: an academic who struggles daily, but wouldn’t trade it for the world, a simple person who is grateful to be able to read, to drive, to enjoy the companionship of good people, and loves learning about this condition of being human and surviving it every day.