In Conversation with Shahd Alshammari, author of Head Above Water. 

Posted in Neem Tree Blog on April 19, 2022

From her research on illness narratives and disability studies comes a thoughtful reflection on a personal journey with Multiple Sclerosis. Kuwaiti-Palestinian author and academic, Dr Shahd Alshammari’s latest memoir, coming this May, is a moving, inspiring and multi-faceted look at her life as a woman in a patriarchal society, in academia, and with a chronic illness. It is therefore our extreme pleasure to share our interview with Alshammari regarding the novel’s origins and themes, starting with some background on the author herself.

Please tell us a little bit about yourself, what you do and your journey as an author? 

I teach literature with a focus on women and disability studies. I also teach a short story writing class which I especially love. I started writing ever since I can remember. My first was a small, self-published poetry collection called On love and loss. I later published Notes on the Flesh, a collection of stories about disability and love.  

What inspired you to write Head Above Water? 

I read lots of memoirs, narrative nonfiction and essays. My favourite was by Nancy Mairs’s called Waist-High in the World: A Life Among the Nondisabled” (1996). I realized there was nothing that dealt with hybridity and disability, or Arabness and disability. There was no representation whatsoever. I felt I had to correct that gap in the literature. 

What do you love about writing non-fiction?

Non-fiction allows you to reflect critically on life’s experiences. I especially like life-writing and illness narratives because I have studied the genre and feel it is usually well-researched but can also be quite personal. I believe non-fiction offers quite a lot of personal histories that we can refer to as human beings. Fiction does this too, of course, and I read and teach fiction. But I am drawn to non-fiction because of the platform it provides us for telling life narratives. 

Why did you choose to write a memoir about your experiences living with Multiple Sclerosis? 

Precisely because it’s an experience that is often misunderstood and there’s a lot of fear and myths around MS (and other disabilities). However the work deals with so much more than just my experience of MS. It is about the experience of pain – in whichever form that comes. 

Why did you name the book Head Above Water? What is the significance of the title?  

I feel that captures how we survive. I can’t say more – read to find out! 

You often refer to MS throughout Head Above Water as an invisible disability; you say ‘MS, then, almost seems non-existent. A ghost that attacks your body.’ Please can you explain what you mean by this, especially for those who have not heard of this illness before.   

With MS, sometimes you can’t see it. You can’t always see me (or others living with MS) with a wheelchair, walker, cane. You can’t see the numbness, the tingling body parts (and it’s not pleasurable!) and you certainly can’t see the pain. MS is like a heavy burden that the body carries. You can’t always see it which makes it harder to believe. Just like lots of illnesses go unnoticed (Chronic fatigue syndrome, fibromyalgia, etc) and this adds to the stigma towards people with invisible disabilities.  

You’ve previously published a poetry collection called On Love and Loss (2015), an academic monograph titled, Literary Madness in British, Postcolonial and Bedouin Women’s Writing (2016) and more recently, a collection of short stories called Notes on the Flesh (2017). At the heart of all of these narratives you place women: disabled heroines, classic authors/characters and even yourself. Coming from Kuwait, how important is it for you to see representation of females in literature and more so females who also have disabilities or long-term chronic illnesses, a subject which is still quite often taboo in many parts of the world.  

I feel it is my life’s goal – my only mission, really, to write about these experiences that have gone unheard of for so long, and are so hard to find in literature. Literature has to house all experiences because there isn’t one “universal” experience of being alive, of pain, and of survival. It was my life’s goal to write this book.  

After reading this book, what do you hope your audience will reflect on?

I hope my readers will reflect on what it means to be alive, living with others, living with disabled individuals and abled-bodied individuals, living with an awareness that we all navigate the world very differently and it’s important to be aware (and kind) to others, ourselves included.  

Did you experience any challenges writing Head Above Water, what were they?

Many, but mainly, writing about pain can be excruciating. It can be quite triggering, as in, the realization that I can still re-visit the pain, and it can feel very much like it’s happening all over again. It is hard to write with a certain distance from the narrator.  

If you had to give MS survivors a key message, what would it be?

MS makes life very challenging, but here we are. That, in itself, is a reminder that we are still trying. I hope many will share their experiences with friends, family, blogging, social media, etc.  

In Head Above Water, you look back on your younger years, when you had first been diagnosed with MS at eighteen-years-old, what is the one piece of advice you wish you could tell her?

Self-love. Have more of it, and find a tool-box to keep you going. Place all your favorite things in life there to keep using them later.  


An Excerpt from Head Above Water: 

 “We will all become ill one day. It’s part of the cycle of life, just like death, but we choose to avoid it, until it becomes a part of us. That is the hardest part. My younger self found it to be a betrayal of the body. I was young and invincible. Today, I accept illness and disability as part of who I am. The way I measure my life in moments of fatigue, energy spikes, and continuous losses, while I gain clarity in other areas.”


Praise for Head Above Water:

Shahd Alshammari’s sensuous prose explores the manipulation of memory, the question of time, and gender politics. We are invited to reconsider the intricacies of love, the body, motherhood, the pervasive power of language, the power of women’s education, and the synergy between the Professor and the student.” – Jokha Alharthi Omani author of Celestial bodies, winner of the International Man Booker Prize (2019) 


“Reading Alshammari’s work, I thought continually of Yeats’s famous line, “a terrible beauty is born.” In this book, illness is that terrible beauty, always affecting but never determining the author’s life.” – Arthur W. Frank, Ph.D. Author of At the Will of the Body and The Wounded Storyteller  


“A necessary and beautiful account of life with a sometimes-invisible and unpredictable disability, complicated by both patriarchy and racism, as well as a professor’s love letter to the act of teaching and being taught.” – Marcia Lynx Qualey (@Arablit) 

Head Above Water will be published by Neem Tree Press on 30th May 2022 (World MS Day)!


Pre-Order your copy of Head Above Water here!