This week is Multiple Sclerosis Awareness Week which runs from 25th April to 1st May. It provides an opportunity to highlight what is often an invisible and misunderstood condition, currently affecting around 130,000 people in the UK, according to The MS Trust Charity.

Assistant Professor of Literature and author of the upcoming memoir, Head Above Water, Shahd Alshammari narrates what it’s like living with Multiple Sclerosis, what it’s like to have a disabled body in a very able-bodied world and the barriers that stop her everyday tasks. When asked about this account, Dr. Nawar Al-Hassan Golley, author of Reading Arab Women’s Autobiographies, says  “Shahd Al Shammari closes her eyes, gets closer to herself, and produces a breakthrough narrative on dealing with a chronic illness. Conversational in tone, yet candid and probing in nature, Head above Water fills a gap in disability narratives by Arab Women.” So it was only a pleasure to interview Alshammari and dive deeper into this non fiction narrative which is going to be published on World MS Day, May 30th 2022!   

 As a scholar of English Literature and Disability Studies, you have a specific interest in the representation of female protagonists in literary texts. Your upcoming memoir Head Above Water is also about your experiences with Multiple Sclerosis as an Arab-Kuwaiti woman. Why did you decide to write a memoir based on your own experiences? 

Precisely because it was so difficult to find any texts that dealt with disability in a non-tragic light. My work is narrative nonfiction, rather than a full memoir. I wanted to expand the conversation on women’s bodies and de-stigmatize the idea of disability. I wanted people to read the text and want to understand more not just about their bodies but also how disability can happen to anyone. It is something we need to think about and we need more allies for disabled people from the abled-bodied community. 

What is the relationship between gender and disability throughout Head Above Water?  

Gender is always the first privilege – before we even begin talking about disability. Disabled women are doubly marginalized and othered. This is portrayed in Head Above Water and I won’t say more – no spoilers! 

What are some major misconceptions and beliefs regarding disability that you find yourself debunking most often?   

People tend to ignore invisible disabilities the most. Invisible disabilities go unnoticed and as such people can attack you for using the disabled parking, or seeing you use a wheelchair or a cane one day, and the next day get up and walk. You can be accused of lying, performing disability, asking for attention, etc. They also tend to fear neurodivergence. There are so many misconceptions that include “talking down” to neurodiverse people, thinking they are incompetent, when the problem is ableist assumptions of competence.  

As well as writing about MS and disability you feature your own upbringing. You write about notions of identity and hybridity:

‘Mama taught me to read. The first sentence we constructed together was, “I can read.” Mama had placed flash cards with words and was teaching me how to construct a sentence in a language that wasn’t her own. She didn’t want me to fall behind in school, and I was struggling to balance two languages and two dialects. Hybridity was proving to be more about balancing the mixture than fusing it wholly together. There was no whole. Everything could easily fall apart. That’s also when I began to fall in love with language, cling to it, try to find a place in it. Language was a place I could create a new identity for myself, someone I could fashion the way that I wanted.’

What challenges did you find with the notions of identity and hybridity throughout the novel? How do you hope readers will relate to this? 

Language is always complex and our identities are never “pure” or original. In that sense, we need to be more open to hybridity in language, identity, culture, ability/disability, sexuality, and existence. We cannot place emphasis on “purity” and “wholeness” (although both Eastern and Western cultures do this) because it is a false narrative that privileges specific experiences and identities. I hope readers will think more about hybridity, hybrid identities, and even narratives. Head Above Water is a hybrid narrative – it blends elements of fiction with nonfiction, and utilizes diary entries, poetic reflections, and other experimentations of genre.  

Throughout Head Above Water, you emphasise the power of storytelling and the profound impact it can have. Would you mind expanding on this idea for readers? 

Every story we read has an impact on us. Every story we tell and re-tell changes our perceptions, expands our thinking. Think about Disney and the stories we grew up reading and watching. Each story left us with so many misconceptions about disability. For example, most of the evil characters tend to be scarred, ugly, fat, old, and that is associated with lack. Storytelling is so powerful because it shapes our conceptions and misconceptions about everything. We tell stories all the time, too. We even tell ourselves stories “I am a failure, I have nothing to keep me going” or “I will never get over this” – tons of short narratives that have an impact even subconsciously. Lots of unpack there, but I will leave you what Head Above Water says about stories.  

You previously mentioned how able-bodied people are very often not the great allies they think they are to disabled folk. What sort of allyship do you think is actually helpful? How can they do better?  

Allyship starts with recognized your own internalized ableism and bias. We start with choosing the right language when speaking about disability or to disabled people. Ask for our pronouns. Ask what people want to be called. Don’t undermine the narrative of disability and pity it or find it inspiring. Be open to challenging your views and discussion. Listen, rather than jump to conclusions about disabled people’s lives. Allyship is also the type of publishing that is accessible to all readers. Audiobooks, ebooks, larger font. Publish more disabled writers’ work, offer more prizes for disabled writers, challenge ableism everywhere.  

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

On life, survival, and hope. The three key ideas in Head Above Water.  

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

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!

Shahd Alshammari’s upcoming memoir, Head Above Water takes us into intimate conversations on illness and society’s stigmatization of disabled bodies. We are invited to ask the big questions about life, loss, and the place of the other. Alshammari’s narrative builds a bridge that reminds us of our common humanity and weaves the threads that tie us all together. Through conversations about women’s identities, bodies, and our journeys through life, we arrive at a politics of love, survival, and hope. 

Throughout this important and beautiful account Shahd reflects on her life as a young student and later as an Assistant Professor of English Literature in Kuwait. She shares many sensitive conversations with her students and about her own life. Having been diagnosed with Multiple Sclerosis, a sometimes-invisible and unpredictable disability, at the age of eighteen, she provides readers with an insight that is both provocative and insightful. Shahd is a pioneer in narrating chronic illness and her work often centres disability, women’s studies, and Arab women’s narratives. Her “new memoir is a sensitive and moving invitation to reconsider the stories that we are made of.” (Dr. Roxanne Douglas, University of Warwick.) 

 But what exactly is Multiple Sclerosis (or MS for short)?

‘MS, then, almost seems non-existent. A ghost that attacks your body. Because it is my body which has somehow decided to plot against my corporeal self, my ethereal self, and my self-image is shaken. This “self” of mine is called into question. How am I to come to terms with the fact that I must succumb to the will of the body, when culture has always suggested that the power of the mind is endless?’ – Shahd Alshammari, author of Head Above Water (2022).

Multiple Sclerosis (MS) is a condition which affects the central nervous system (the brain and spinal cord). In MS, the coating which protects the nerves, also known as the myelin sheath, is damaged. It is an auto-immune disease, where the immune system shuts down and attacks the nerves protecting this sheath. This process is called demyelination and this disrupts the ‘messages’ being transmitted around the body and to the brain, causing them to slow down, or stop entirely.  

The term ‘Sclerosis’ originates from Greece and means scarring. The demyelination process causes many scars or lesions in different places within the brain and spinal cord which results in a range of symptoms. Some of the most common are fatigue, unusual feelings in one’s skin (such as pins and needles, numbness or burning), problems with eyesight, memory and thinking problems, and walking difficulties. 

According to the MS Trust, it is estimated that more than 130,000 people in the UK have been diagnosed with MS. It is also nearly three times more common in women than in men. MS is a life-long condition but it is not a terminal illness and it isn’t infectious or contagious so it can’t be caught or passed on to other people. Those living with MS experience it differently, and symptoms vary from person to person and from day to day. This can make MS rather unpredictable. 

Find support for MS 

MS can be extremely hard to deal with. But whether you’ve had it for a while, are newly diagnosed, waiting for a diagnosis or care about someone living with MS, use the links below to find support. 

MS Society

Website: https://www.mssociety.org.uk/   

Freephone: 0808 800 8000 

MS Trust

Website: https://mstrust.org.uk/  

Freephone: 0800 032 3839 

Email us: ask@mstrust.org.uk 

MS UK

Website: http://ms-uk.org/  

Freephone: 0800 783 0518 

Praise for Head Above Water 

“The core of this book lies in its intimate questioning of loneliness and disability. The soul is held captive by the body, but the body is also the finding place, the freeing place. 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. It is a brave book.”  – Jokha Alharthi Omani author of Celestial Bodies, winner of the International Man Booker Prize (2019)    

 “Shahd Alshammari’s memoir of life with MS is one of the first distinctly 21st century illness narratives. She situates chronic illness at the intersection of issues that include gender, exile, medical experimentation, and the politics of the Middle East. Her memoir becomes truly a dialogue, as her story fills with the voices of other women and men she has known, and how illness disrupted their lives. Reading her, 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  

Click here to pre-order Head Above Water which will be published on May 30th 2022 (World MS Day). 

About the Author 

Shahd Alshammari is an author and academic, and lives with Multiple Sclerosis. She holds a PhD from the University of Kent, Canterbury and spent her graduate years in the United Kingdom. She returned to Kuwait to teach literature and pioneer disability narratives and voices. Her works center on disability, women’s studies, and Arab women’s narratives. 

You can find more about the author here:  www.shahdalshammari.com
Or on her blog here: www.drshahdalshammari.com 

Learn more about Head Above Water – Neem Tree Press 

This article is based on the information references below:

• Head Above Water by Shahd Alshammari (Neem Tree Press, 2022)
• MS Trust (2022) MS: the facts, available at MS: the facts | MS Trust 
• MS UK (2022) What is MS?, available at What is MS? Choices booklet – MS-UK | Multiple Sclerosis Information, Helpline, support, MS news and research 
• MS Society (2022) What is MS?, available at What is MS? | Multiple Sclerosis Society UK (mssociety.org.uk)