About the Book
The book contains a collection of the powerful personal writing which has emerged from the therapeutic writing group in the Mount Sinai Department of Psychiatry's Clinic for HIV-Related Concerns.
The selected stories were submitted by participants from fourteen groups over seven years at the clinic, and present a wide range of voices and styles addressing the complexities of living with HIV after the advent of HAART.
To order a copy of the book, please contact Life Rattle Press at: stories@liferattle.ca
Resources
The book also contains a module on Forming an Expressive Writing Group (copyright 2008 Allan Peterkin and Julie Hann) which we are pleased to make available here. This module contains a range of useful information to help interested practitioners or individuals start their own expressive writing group, from tips on structuring the group and selecting members to potential topics for writers and starting points for group discussion.
www.ars-medica.ca
Ars Medica: a biannual literary journal that explores the interface between the arts and healing, and examines what makes medicine an art. Funded by the Mount Sinai Hospital Foundation; the Department of Psychiatry at Mount Sinai Hospital; and the Munk Centre for International Studies, University of Toronto.
www.liferattle.ca
Through Life Rattle Press and the Life Rattle radio program, Life Rattle searches out, edits, records, broadcasts and publishes experience-based prose by new writers from a variety of communities in the Toronto area, communities that may have difficulty in finding a way to make their voices heard. Life Rattle provides support and encouragement to new writers, including professional-level editing and assistance in accessing grants and other means of publication and recognition.
Book Reviews
Canadian Medical Association Journal (CMAJ), August 26, 2008
Xtra, August 11, 2008
Understanding Through Therapeutic Writing
Reviewed by Lara Hazelton, MD, CMAJ
When we experience change, uncertainty or loss, the most useful response, although not always the most natural, is to try to make sense of what is happening. To do this, some turn to psychotherapy. Others write. At the Clinic for HIV-Related Concerns at Mount Sinai Hospital in Toronto, Ontario, people living with HIV may choose to do both at once.
Still Here: A Post-Cocktail AIDS Anthology is a collection that arose out of the Therapeutic Writing Group facilitated by psychiatrist Allan Peterkin and occupational therapist Julie Hann. The essays, collected over 8 years, reflect the experiences of people living with HIV since the advent of the antiretroviral medication “cocktails” that have prolonged the lives of many patients.
In the group, participants are encouraged to create a “competent” narrative that is comprehensible to other members when the work is read aloud. The pieces are meant to incorporate feelings as well as facts, and the authors' own insights are an important part of the finished essay.
The potential value of this approach can be appreciated from participant feedback. One commented that he “had to make something rational, organized, confront things without rambling.” Many of the benefits identified by participants would be difficult to provide using other therapeutic modalities. For example, one person reported he was “less likely to forget my stories versus forgetting what I said in therapy the week before.” Another valued the “possibility to reread then reanalyze my old thoughts.” “Now able to share my stories with my family so they can understand me better,” was another comment.
The essays in the anthology are grouped under 5 themes: change, hope, severance, treatment and loss. There are often strong emotions expressed, including grief, anger and fear, although some have a lighter and even humourous touch. The writers are articulate in describing their experiences, and it is obvious that time and thought has gone into polishing the works before publication.
In a brief appendix at the end of the anthology, the editors explain the process for forming an expressive writing group. Before setting up the group, Peterkin and Haan consulted with Guy Allen PhD, a professor of writing at the University of Toronto. They also reviewed the literature on narrative and therapeutic writing, including the writings of James Pennebaker and Michael White. The anthology features instructions on how to start and run a group, ranging from pointers on selecting patients to how to improve the quality of the compositions themselves. Not only is this an interesting topic, the notion of setting up an expressive writing group may be attractive to many health care professionals. While the authors do provide a list of references, it still might have been worthwhile to expand this section.
As a psychiatrist who does not have any HIV-positive patients at the present time, I was engaged and challenged by this book. Reading it caused me to reflect on the experiences that are unique to patients with AIDS as well as those that are common to other medical and psychiatric illnesses. This anthology would be of particular interest to patients, family members and those who work with people with AIDS, and could be useful for teaching medical students or other learners.
Ultimately, it is the authors of these stories who will find the greatest value in them, and in the process of their creation. As one writer says, “I believe in the strength, wisdom and effect of my stories. Ergo, I believe in myself.”
Toronto Writers Tally Losses and Celebrate Survival
Reviewed by Shawn Syms, Xtra.ca
If silence equals death, can speaking out transform one's life? In Still Here: A Post-Cocktail AIDS Anthology, 66 stories by 31 local writers living with HIV testify to that effect.
The book's contributors are all participants in the therapeutic writing group at Mount Sinai's Clinic for HIV-Related Concerns, operated for the past seven years by occupational therapist Julie Hann and author and psychiatrist Allan Peterkin; both serve as editors of Still Here.
For the most part the writers are gay men and long-term survivors of HIV. They manage to straddle a precarious bridge between the past and present, facing an uncertain future with equal measures of trepidation and dignity. Some are well-known AIDS activists and scribes, while others share deeply personal stories using pseudonyms or initials. The book covers five major themes: change, hope, severance (from family, friends, the workplace), treatment and loss.
A controversial notion, most recently espoused by leading Canadian AIDS researchers in an op-ed in the National Post, suggests "treatment optimism"— the idea that HIV is now a more-or-less easily manageable condition — has led to decreased vigilance around protected sex.
But many studies indicate people's motivations around sexual safety are more complex than that. I suspect very few people actually believe life with HIV is a picnic. In case there's any doubt the contributors to Still Here provide plenty of evidence to the contrary.
Yes, there have been great advances in medical treatment — the "cocktail" in the book's title refers, of course, to advanced multidrug therapies that have helped render HIV/AIDS a chronic condition rather than a certain demise. But not all regimens work for everyone and side effects can vary, sometimes brutally, from person to person.
Scarfing down a kaleidoscopic array of pills, never knowing when they might stop working or what unexpected side effects could arise, sounds like a recipe for hypertension in itself. As Edward Berger explains, sometimes the cure just seems to make things worse. His introduction to Sustiva, a drug characterized by peculiar interactions with the central nervous system, sent him barrelling toward the nearest hospital in the grip of extreme anxiety attacks.
The mixed blessing of these powerful medications does little to erase the lingering stigma of living with HIV — or the emotional trauma that can accompany surviving the deaths of friends and lovers, bearing witness to the precarious nature of mortality.
Peter Scott delivers a wrenching story of a lover's painful decline, ending in death just months before the first protease inhibitors began to transform the lives of people with AIDS. Other kinds of losses generate a strange, lingering emptiness: in "My Gift to Science," DV laments the fact he'll never be able to donate his organs to help someone else.
But there's room in Still Here for humour as well... and for the erotic. In Derek Thaczuk's "Doctor Blaylock," a prominent physician serves his patient population while secretly wearing nipple clamps and a butt plug. It may be fiction, but part of me hopes it's actually true.
Not every narrator is likeable, and the book includes some moments of painful — if understandable — melodrama. Sometimes the emotions in these short essays are both starkly sketched and perfectly calibrated. In "Dear John," Berger reaches out to a lover with whom he had a brief but intensely passionate affair 10 years earlier, only to find out from his sister that the man died of AIDS years before.
The lover's family had all assumed Berger was the source of the infection. "I don't know if you can hear me right now," Berger writes, "but if I am responsible, I am sorry if I am the reason you died. Please, please forgive me." This must have been painful to write; it was heartbreaking to read.
Still Here offers no saints or martyrs — just brave stories of loss, survival and hope likely to touch most readers on a deeply human level.