Multiple Sclerosis and its Literary Representation: A Talk with Reema Humood

By Shahd Alshammari

Reema Humood’s أيام جميلة  (Beautiful Days / Jamilah’s Days, 2015) begins with the narrator, the titular Jamilah, entering a traditional marriage in which she hopes to find happiness. As a traditional, shy, and insecure young woman, she struggles to navigate marriage to a man she cannot connect with, no matter how hard she tries. 

Fate would have it that Jamilah is suddenly presented with an onset of blindness, later revealed to be a symptom of Multiple Sclerosis (MS). Unable to comprehend the randomness of MS, she struggles to accept the diagnosis and to maintain her role as wife and a new mother to Basil, her firstborn. Her husband is quicky repulsed by the disease’s various manifestations and is urged (by family and friends) to divorce her. Devastated by the perceived failure on her part, Jamilah is constantly reminded that she is no longer desirable as a woman. She begins to struggle with depression and finally, with the help of a nurse, begins to explore support groups. 

At the MS support group, she meets Ammar. Like Jamilah, Ammar is a young man in his twenties who has been diagnosed with MS. Unlike Jamilah, Ammar has never been married. Unsurprisingly, the two gravitate toward each other and end up planning to get married. Upon finding out that Jamilah is also disabled, Ammar’s family refuses the union. Both of them are devastated and part ways, coming to the realization that being young and disabled means society’s harsh stigmatization and lack of marriage opportunities. While this marriage plot is problematic, this is a novel that explores disability and womanhood, toxic masculinity, and ableism. It ends with Jamilah accepting that her life’s narrative is no longer a traditional one, and she concludes her narrative with a desire to be happy and live “beautiful days.” 

Reema Humood is a Palestinian-Jordanian author who lives in Kuwait. Her Beautiful Days is a novel that places a disabled protagonist at its forefront. Disabled female heroines are unheard of in Arabic literature, and Multiple Sclerosis as a disease remains an enigma to many readers. 

As a disabled female academic living with (and researching) MS, I sat down with the author to discuss her novel’s gendered elements of disability. In particular, I wanted to know more about her position as abled-bodied author and her choice of MS as the protagonist’s disease. 

But first, a short passage from the novel for context, as Jamilah’s thoughts tell the reader what she finds out at the MS support group meeting:

The stories I heard suffocated me. Love and injustice took over. The love of caretakers who don’t mean to suffocate you, but they do with their worries and fears, and the injustice and discrimination against people like me, rejecting us, excluding us, denying us the right to be…I discovered there was ‘us’ against ‘them’, the sick ones and the healthy ones, each group gazing at each other, afraid. Any attempt at meshing together, at understanding each other, stops and sinks in muddy waters (22, my translation)

Why did you choose to write a novel about a woman living with Multiple Sclerosis? To my knowledge, there are no novels from the Arab world dealing with MS. 

Reema Humood: I am angry about the position disabled Arab women are in. My friend has Multiple Sclerosis and lived most of her life in Kuwait, listening to horrible stereotypes about disabled women. Listening to her made me feel like I should write about her experience. She is not a writer, and she urged me to tell the stories that no one cares about. Nobody even knows what MS is. I didn’t know anything about it until my friend told me about it. As a writer, I believe that my role is to shed light on these issues that nobody talks about. Jamilah’s character is every disabled woman, not just MS. I focused on MS because I understood and researched it, and tried to include my friend’s stories and other women with MS stories that I read online. 

Can we discuss the title? You called the novel Ayam Jamilah even though the novel discusses difficult days, unlike the meaning of the title? 

RH: For me, living in Kuwait and being around many Palestinians growing up in Kuwait, I have seen the difficulties that women go through in terms of oppressive marriages. My friends are mostly women, and I felt their voices needed to be heard. I had lost touch with my friend for many years, and when we got back in touch, she informed me that MS had completely taken over her life. She had lost her husband’s support and his family insisting on him re-marrying because she was now disabled and could not satisfy him or continue to have babies. 

I started thinking about how disabled women are treated in the Arab world, and began to read more about women’s stories through Facebook, blogs, and then began speaking to them through various outlets, chatting, calls, etc. I later talked to medical doctors too – to confirm and understand what MS actually does to the body. I didn’t understand because I had never heard of MS before. While listening to these invisible stories of disabled women living with MS, I began realizing how invisible and silent these narratives are. The women didn’t even consider their lives tragic, but society did. That’s why I wanted to call the novel Ayam Jamilah. The days are not tragic, they are good days, even though society thinks disabled women are tragic characters. 

We also have Ammar’s character, a man who has MS, like Jamilah. Why did you decide to include his perspective?

RH: I was thinking about how disabled men, with the same disability, would be treated. I created a fictional narrative of course, by adding the character of Amar, a love interest who also had MS. I wanted to show that disability doesn’t know gender. Ammar cannot marry his love because he is rejected by her family, and she is rejected by his. Families oppress both of them. Ammar is faced with society’s expectations about what it means to be a man, and because he is not a healthy man, he is rejected by society. He feels shame, anger, and many negative emotions. I created the love interest for Jamilah after she gets divorced to show that she can move on. However, she moves on to Ammar, who, like her, is living with MS and society’s oppression.

Most people in this part of the world consider men to be invincible, and when men become disabled, they still retain some type of dignity. Disabled women don’t, and the novel makes this clear. 

RH: I have seen these experiences and heard horror stories about women who become ill or disabled. Almost everyone (men and women) seems to think they should be left behind, or that they are no longer worthy of love or marriage. It’s so much injustice. In the novel, Ammar’s mother, knowing her son is disabled, also refuses to allow him to marry a disabled woman. It is hypocritical and yet it’s not labeled as that. I was hoping the multiple tensions in the novel between the characters would show the injustice and sexism. 

I think it’s very important to have multiple narrators in a novel and you have done that in your text. Each narrator gives us a different perspective on how they navigate their body, society’s oppression, stigmatization of disabled individuals, and we come to see how women are doubly oppressed by gender and disability. I do think the novel needs to be translated into English because there are hardly any Arab narratives on women’s disability (whether fiction or nonfiction). 

Also read:

Alshammari, Shahd. “Disease and Disability: Missing in Arabic Narratives”. Cambridge Open Engage. 2021, pp. 1-4. doi:10.33774/coe-2021-51jd1  

Humood, Reema. Āyām Jamīlah. Makatabkom: Kuwait, 2015. 

The author currently holds all translation rights. Contact: rima-noor@hotmail.com

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Shahd Alshammari is Assistant Professor of Literature and author of Head Above Water: Reflections on Illness (Neem Tree Press, London, 2022). She blogs at www.drshahdalshammari.com and is interested in disability studies, women’s studies, and Arab women’s literature.

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2 thoughts on “Multiple Sclerosis and its Literary Representation: A Talk with Reema Humood

  1. I was diagnosed in 1996, before symptoms started. I am a pianist, suddenly unable to open my hands wide enough to get 8 keys. Nobody in my family had MS, nor my grandparents. Last year a cousin younger than me had MS, she is 40. I have primary progressive MS. I do not walk for the last 18 years, I was born in 1962. I have had 6 strokes and 1 heart attack.The Rebif (beta-1a) did very little to help me. The medical team did even less. After roughly five unending years of trauma in the family my MS developed into progressive. There have been many changes in the last 3 to 4 years. Many falls, many fractured bones, and three moves all in five years. I have gone downhill. Considerably. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment for Multiple Sclerosis, I started on MS Herbal Treatment from Kycuyu Health Clinic, the herbal treatment immensely helped my Multiple Sclerosis condition, i had huge improvements.

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