Between Illness and Exile in “Head Above Water”

15 July, 2022
Aula Al Ayoubi (b. Dam­as­cus, 1973), “Two Selves,” acrylic on can­vas, 90x90cm, 2012 (cour­tesy Aula Al Ayoubi).


Head Above Water: Reflec­tions on Illness
Neem Tree Press 2022
ISBN 9781911107408


Tugrul Mende


Researchers have been study­ing mul­ti­ple scle­ro­sis (MS) for more than 150 years, yet the cause of this autoim­mune dis­or­der remains unknown. As the Mayo Clin­ic notes, the body’s immune sys­tem attacks its own tis­sues, destroy­ing the fat­ty sub­stance that coats and pro­tects nerve fibers in the brain and spinal cord (myelin). The result­ing symp­toms man­i­fest them­selves so ran­dom­ly that those who suf­fer from MS nev­er know quite how tomor­row will turn out. Treat­ment ther­a­pies exist, but MS remains beyond defin­i­tive cure. In 2015, it was esti­mat­ed that more than two mil­lion peo­ple glob­al­ly were affect­ed by this disease.

Head Above Water is pub­lished by Neem Tree Press.

Far more infor­ma­tion is avail­able on mul­ti­ple scle­ro­sis in Eng­lish and oth­er Euro­pean lan­guages than in Ara­bic. Even though Shahd Alshammari’s Head Above Water is writ­ten in Eng­lish, it attempts to fill a void with its com­plex nar­ra­tive on dis­abil­i­ty and ill­ness as expe­ri­enced by an Arab woman, one who has spent most of her life in an Arab country.

Shahd Alsham­mari was 18 years old and liv­ing in Kuwait when her neu­rol­o­gist told her that she would die young. In Head Above Water, she describes her sub­se­quent jour­ney with MS. But it is not only her jour­ney; this book reflects on how ill­ness and dis­abil­i­ty are treat­ed with­in soci­ety and in lit­er­a­ture. Through­out, Alsham­mari address­es exile, fem­i­nism, and ableism. The book is not so much about the author’s ill­ness, but about how to deal with one’s dis­abil­i­ty in a soci­ety that tries to hide most such afflic­tions. What makes Head Above Water a must-read is not only the fact that it engages with MS in a broad­er sense, but that it teach­es you that while you may have to grap­ple with your own dis­abil­i­ties and ill­ness­es, you are often still able to do the things you intend to do. 

Sto­ry­telling is an impor­tant aspect in Alshammari’s nar­ra­tive, a tool for her to address our lack of aware­ness with her own anecdotes.

Con­ver­sa­tion fea­tures in each chap­ter, between Alsham­mari and her stu­dent Yas­meen as well as with oth­ers. An essen­tial aspect of the book is the way the author not only gives voice to her­self, but to oth­ers whose lives have been affect­ed by ill­ness­es and dis­abil­i­ty. Indeed, Alsham­mari shares the stage with peo­ple fac­ing sim­i­lar chal­lenges, seem­ing­ly uncon­cerned that they might steal her thunder.

Alsham­mari starts out, “Sto­ries are who we are. Sto­ries make up our most vul­ner­a­ble moments, and in sto­ry­telling we have the pow­er to gain a sense of agency over our lives.” She begins her con­ver­sa­tions with Yas­meen, who is an inte­gral part of the book. The read­er becomes involved through these con­ver­sa­tions, which evolve into a com­plex nar­ra­tive of patri­archy, colo­nial­ism, lit­er­a­ture, and academia.

The book is also about exile, and what it means to leave home twice. Alshammari’s mater­nal grand­moth­er Sahar was one of the first Pales­tin­ian teach­ers in Kuwait, back in 1949, and she had can­cer. Her fam­i­ly expe­ri­enced exile twice, because mem­bers of the Pales­tin­ian side were forced to leave Kuwait once it regained its inde­pen­dence from Iraq fol­low­ing the Gulf War and began pun­ish­ing Pales­tin­ian res­i­dents for their per­ceived pro-Iraqi stance. This left a mark on Alshammari’s life. She quotes Edward Said: “Exile is strange­ly com­pelling to think about but ter­ri­ble to expe­ri­ence.“ This is meant not only as phys­i­cal exile but as an exile of the body from a mind that some­times wants it to do things it can­not do.

The author continues:

One theme kept emerg­ing, but I want­ed to write all the themes down while I still could. Or per­haps get some­one else to write them down. What­ev­er the case, they were bound to be writ­ten. So many jour­nals, so many notes, and there had to be a place for them. It didn’t mat­ter who would read them. Pain had to be exor­cized. A huge part of my life had includ­ed car­ry­ing sto­ries and won­der­ing where they belonged.

Shahd Alsham­mari is a Kuwaiti-Pales­tin­ian author and aca­d­e­m­ic. Her research focus­es on women with chron­ic ill­ness­es, men­tal ill­ness in lit­er­a­ture, and dis­abil­i­ty stud­ies. She is espe­cial­ly inter­est­ed in the con­cept of hybrid­i­ty and looks at the cor­re­la­tion of dis­abil­i­ty stud­ies with iden­ti­ty in the Arab world, hav­ing been diag­nosed with MS at the age of 18.

Alshammari’s book is divid­ed into four parts, each con­sist­ing of sev­er­al chap­ters. Except for chap­ters one and two, they all begin with diary and blog entries, from which con­ver­sa­tions with Yas­meen grow. “Lan­guage has failed me, but worse, I have failed lan­guage. I con­stant­ly feel mis­un­der­stood,” the author writes. The nar­ra­tive switch­es between the diaries and what Alsham­mari devel­ops from those blog entries.

The title of the book sug­gests that not every­thing in life is black and white, and not every­thing gets a hap­py end­ing. Yet the book is cer­tain­ly not bleak; it tries to reflect on ill­ness in a way that gives peo­ple a rea­son to con­tin­ue read­ing. It also tries to make you under­stand that we in soci­ety have much work to do in order to learn how to prop­er­ly and sen­si­tive­ly inter­act with those who suf­fer ill­ness or dis­abil­i­ty. Even when the author was abroad, study­ing in Eng­land, she strug­gled not only with her MS, but with the fact that she wasn’t born there. She faced resis­tance as some­one with MS, and a for­eign­er at that, who had gained admis­sion to the uni­ver­si­ties of Exeter and Kent:

Acad­e­mia looked dif­fi­cult and had no place for peo­ple like me. It said so in the Uni­ver­si­ty reg­u­la­tions. If I want­ed a schol­ar­ship, I would have to be fit and free from “issues.” There was a med­ical report that had to accom­pa­ny your appli­ca­tion. I wasn’t able to do that, and for the first time, I felt reject­ed by a larg­er enti­ty than a man. The cul­ture of acad­e­mia pre­sumes those best suit­ed for acad­e­mia are peo­ple who are abled-bod­ied and can demon­strate dis­ci­pline and pro­duc­tiv­i­ty. There is no place for any­one who doesn’t have auton­o­my and can’t keep it togeth­er always. 

She per­sist­ed and showed that it was pos­si­ble to be suc­cess­ful in acad­e­mia. Some of this was thanks to fel­low stu­dent Han­nah, who became her con­stant com­pan­ion dur­ing the years in Eng­land. Lit­er­a­ture was the thing that brought them togeth­er and through which they bond­ed. With each chap­ter, Alshammari’s obser­va­tions expand into the aca­d­e­m­ic world of Eng­land, up to the point where she man­ages to fin­ish her PhD. In addi­tion, the nar­ra­tive com­bines her aca­d­e­m­ic world and the world of her fam­i­ly, a major com­po­nent of her sto­ry, par­tic­u­lar­ly her moth­er and grand­moth­er. Alsham­mari describes how peo­ple react to dis­abil­i­ty and ill­ness and what this means for her not only in acad­e­mia but in her pri­vate life as well.

As not­ed above, there is a pauci­ty of books in Ara­bic that deal with ill­ness and dis­abil­i­ty While some deal with can­cer and oth­er com­mon ill­ness­es, rare mal­adies tend to be absent in lit­er­a­ture, espe­cial­ly inso­far as female writ­ers are con­cerned. This is true of both Ara­bic-lan­guage fic­tion and non­fic­tion. Head Above Water was not writ­ten in Ara­bic, but by virtue of its author’s iden­ti­ty and her life in Kuwait, it may spur pub­li­ca­tion of Ara­bic-lan­guage books on the sub­ject of dis­abil­i­ty. At any rate, Head Above Water tack­les ill­ness and dis­abil­i­ty, par­tic­u­lar­ly as it affects a young and ambi­tious Arab woman, with warmth and determination.



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