Dance When the Brain Says No – A Memoir, by Kathleen Price. Forest Dale Publishing Company (www.forestdalepublishing.com), 241 pps, 2009. ISBN 978-0-9841636-0-1. Available via Amazon, Barnes and Noble, and Abebooks.
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This is a book by a mother whose vivacious and strong-willed daughter developed a medulloblastoma brain tumour when she was 19 and died from it two and half years later. It is based around writings (letters, notes and poems) by the daughter, Leslie Doyle, and a narrative by her mother Kathleen. Chapters about Leslie’s life before the emergence of the tumour alternate with chapters about her journey with the tumour. It is a story about Leslie, Kathleen, her then husband Mike, their adopted son Dan, and the various people who were part of this journey – medicos, health professionals, College friends, boyfriends, and even those who only had brief walk-on parts.
It is an intensely sad but rewarding
book. I read it in one
sitting on Christmas Day, the book having arrived unexpectedly on
Christmas
Eve. The book has been published twenty years after Leslie’s death and
is set
in the 1980s. Her parents were of my generation and I can recall the
personalities and issues of the 1980s that are mentioned when Leslie
set out to
live as a student in
Books of this type can have a useful purpose, in so far as they provide a window into how other people cope when faced with the threatened loss of a loved one. It is eight years since I lost my wife to a glioblastoma brain tumour and it was sad during 2009 that our only daughter was married and her mother was not present. Kathleen and Mike lost their only daughter and their adopted son Dan lost a sister whom he loved. For me, therefore, reading the book provided a different perspective on the loss of a loved one. Losing a wife and losing a child are different types of losses.
Reading this book I was reminded of another story about a mother whose daughter died from a brain tumour and the way in which the daughter’s writings form part of the story. (See “Julie’s Story: Diary of a Brain Tumour”, All in the Mind, ABC National, 2007). Another relevant source is Margaret Brown's edited version of 27 year old Amber Turk's journal "From the Other Side - How it Feels to be Young and Dying". Amber died from a brain tumour in 2003. Evidently a second edition, "Time to Listen", will be published this year.
Leslie had her surgery in May 1985 after a short period of disorientation and worsening headaches. Medulloblastomas, which are one of the more common paediatric brain tumours, are usually diagnosed at a younger age but Leslie was nineteen.
The story opens with the mother Kathleen accompanying a sedated Leslie to radiation therapy in a hospital basement. Kathleen writes “I cling to a thread of composure that threatens to break if I dwell on my fear too long”. Caregivers of a person with a brain tumour will resonate with that expression, it is beautifully and so accurately formulated.
At one point Kathleen and her sister Bonnie wrestle with their mother’s attempt to contextualise Leslie’s illness within her Christian belief system but agree to disagree with their mother. Leslie later informs her grandmother that she also has a different belief system, not only about religion but about social and moral values. They remain in communication despite this.
1985 was pre-World Wide Web days and Kathleen decides to buy a typewriter to write a regular one-page summary of Leslie’s progress and to mail it to friends. Today, one would create a web diary or blog. As Leslie’s illness persists her mother dreads to meet people she knows “Some stumbled through apologies for not having called, others pretended they didn’t see me, and still others spoke only to me while ignoring Leslie. The friends I had regularly lunched with prior to Leslie’s diagnosis gradually drifted away …”.
Some caregivers may have similar experiences but, on occasion, new acquaintances may step in to fill some of those gaps.
Leslie obviously had a wonderful sense of the ridiculous. Due to be discharged from a hospital she wanted to surprise her treating physician and dressed in a hairy gorilla costume and asked the nurse to summon the Doctor. Hurrying to her bedside he exclaimed after a brief look: “Acute Vincristine Retrograde Syndrome!”
But on other occasions she becomes a challenge to her friends, inviting them in letters to either be more supportive or to sever their friendship. Reading these letters one is prompted to ask “Was her tumour impacting on her reasoning, or were they cries for reinforcement of a long-term relationship?”. Friends of someone who has a brain tumour should understand that they might also be challenged in this way.
Leslie writes a clever piece entitled “The Wonders of Having a Brain Tumor” which contains statements such as: “I used to be right-handed; now I am ambidextrous, I’ve lost enough weight to be almost satisfied with the way I look …” but this is interpreted to be an example of her self-denial. Later, at Leslie’s initiative, she and her parents do discuss her possible death.
Hope is maintained by her correspondence studies and applications for admission for further study, to be eventually on her own, away from the protective support of home. At an early stage her mother wonders aloud if she had “caused” her daughter’s brain tumour by encouraging her to stay in another city and thus experience high stress. It is human nature to search for these possible “causes”, even if they are without foundation.
Leslie describes her chemotherapy with this evocative description: “My new doctor prescribed a chemotherapy protocol that is, to say the least, energetic. The tumour is stabbed, shot, and drowned with each treatment while I, lucky girl that I am, am merely terrorized.”
As she deteriorates Leslie is unable to complete tasks. Ordered gifts arrive and she wants to wrap them for her friends but she grows tired. Her mother writes: “I was torn between wanting her to do a once pleasurable task and wanting to protect her from its frustration”. This is a delicate challenge facing many caregivers and there is almost no way of avoiding later recriminations that, occasionally, you intervened inappropriately.
The words that form the title of this book are explained in a postcard from her boyfriend Erik, written just two weeks before her death: “I felt you close, though 1500 miles and years away, and I had to dance. I danced alone, for you, I imagined I was with you, hoped somehow you’d feel it, had to believe that you still dance somehow, and I still believe you do, even if your body doesn’t know, and your brain says no …”. They had met each other in Grade 9.
Leslie shows only partial recognition and responsiveness in her final days and simply stops breathing at 3 a.m. one morning.
Two years later Mike and Kathleen divorce but Kathleen writes that she believes they both rose to the demands of Leslie’s illness. “ …We were an ongoing support to one another and never once do I recall either of us making an unwilling sacrifice”.
In language that bureaucrats and statisticians understand, the devastating impact of brain tumour deaths is expressed by the measure of “person years of life lost (PYLL)”, which catapults brain tumours from a relatively insignificant position on the list of deaths for all cancers, to a high position in this form of comparative measurement of mortality, mainly because they cut short so many young lives.
Having left this world at 21 years of age one cannot help but wonder what kind of life Leslie Doyle might have lived had she not had this illness. In 2009 she would have been 43. Although many years have passed since her death her mother has done great justice to Leslie’s memory.
Denis Strangman
26 December 2009