Send Me More Stories About Chronic Pain
By any definition, Stephanie de Montalk is prolific. As an award-winning author, she has written seven books since 2001, including four collections of poetry, a novel, the biography Unquiet World, and her critically acclaimed memoir, How Does It Hurt?
Even more impressively, Stephanie completed her PhD, resulting in the publication of How Does It Hurt?, almost completely from her bed. Over a decade ago, she slipped and fell while getting out of the shower. The fall entrapped a major nerve in her pelvis, resulting in debilitating pain, and forever changing her life.
Writer Sarah Wilson, herself no stranger to being a poet coping with chronic pain, sat down with Stephanie for Folks to talk about how living with chronic pain is like holding down a full-time job while simultaneously running a marathon, and why we should believe people who tell us they are in pain, instead of dismissing them as if they had a troublesome cough.
What has life been like for you since the accident? You’ve had multiple surgeries and illnesses to complicate your situation.
My life has changed immeasurably since my accident (14 years ago, November 2002). The fall in Warsaw that damaged my pudendal nerve and its multiple branches not only resulted in ‘severe intractable non-cancer pain,’ as this state of pain is known, but it meant I couldn’t do any activities that require sitting, standing or walking for long: a situation that has worsened with time.
Stephanie de Montalk’s headshot.
The restrictions caused by the pain, which I feel in the pelvic floor and adjacent structures, are significant. I must eat and drink standing up or lying down, and can only socialize sparingly. I cannot drive a car or journey far as a passenger, dine out, or go to the theatre, cinema, or anywhere one sits. If I need to fly, I must lean against a wall in the galley or upgrade to Business Class and reclining seats (once, as a result of a booking problem, I had to fly all the way from Auckland, New Zealand to Perth, Australia – 7.5 hours each way – standing the whole time).
This means that controlling the pain depends as much upon immobility as on medications. As a result, I spend each day lying down, on the sofa I call my ‘opium couch’.
This all also affects my family: my husband, my four adult children and my grandchildren. I especially feel for my husband, not that he ever complains. He dwells, as I try to do, on the positive sides of the life we have: a life pared down to essentials and lived to a greater extent than previously in the mind. Moreover, as an accident compensation lawyer in constant contact with accident victims, many of whom suffer chronic pain, he finds that my condition assists him in his work: he tells me that when he says to his clients, ‘My wife experiences severe chronic pain,’ he hears relief in their voices, and finds that communication with them opens up.
Through all of this, you decided to undertake a doctorate degree – why?
I knew I wanted to write about pain, but I decided that writing a memoir would not be sufficient. In order to maximize my focus and effect, and in order for the work to achieve authenticity, I needed to place my memoir within a study of pain in a PhD in Creative Writing. In the same way many people who present with chronic, invisible pain are disbelieved, I felt that if I wrote an autobiography outside of the almost clinical frame of higher education, it had less chance of the impact I desired.
The PhD would provide the necessary weight of study and research, and the rigor of critical analysis. The creative components, which included poetry, essay, imaginative biography, would bring the sorts of imaginative light sources needed to illuminate the dark corners of pain that straight writing might not reach.
As well, I decided that the presence in the text of other writers who lived with and wrote about pain, would enable me to step back a little, to explore aspects of pain I experienced in my life through the lenses of others, to present as less preoccupied with myself.
At work on her ‘opium couch’.
How Does it Hurt? is the result of this work. What did you hope to achieve with the book?
The idea of a book that would raise awareness of, and bring a degree of clarification to, chronic pain arose primarily as a result of the misunderstanding I was experiencing with my own constant pain.
I felt exiled, isolated, and very much aware that family, friends and even medics were uncomfortable with the subject, reluctant to discuss it. Many were reluctant to believe that chronic pain was not simply akin to a troublesome cough. This situation was magnified by the fact that my nerve entrapment and damage were rare, and not known about in New Zealand at the time of my accident. I had to fly to Nantes, France for diagnosis and surgery.
I was aware that others in pain were additionally suffering from emotional pain through an absence of validation of their physical pain, and wondered if, as a writer, I might be able to help.
How did you do it?
Completing the PhD was a huge challenge. The physical difficulties of researching and writing while lying down, my pain and fatigue, the medications… plus the stress of deadlines. I often felt as if I were juggling the degree with running a marathon or a couple of full time jobs. That’s what being in pain is like.
However, as I wanted to finish the work within the three year time frame, I just had to keep my nose to the grindstone. My supervisors were marvelous and came to my house (handy to the university) for our six-weekly meetings; and their support for the project fed my belief that I was undertaking necessary work.
What contribution has How Does It Hurt? made to the medical and literary communities?
The response has astounded me. Clinicians have contacted me to say they have gained valuable insights into the lived experience of pain and are recommending the book to their colleagues. The latter agree that the patient voice is underrepresented in medical literature. I’ve heard that one specialist keeps a copy of the book in his surgery and lends it to patients in need.
In literary terms, I was delighted to present in a session entitled ‘Etched in Pain’ at the 2015 Auckland Writers Festival, where it won a Nigel Cox Award. I had never expected to be discussing the difficult, uneasy subject of physical pain at such a large and receptive literary gathering.
Photo: Arlo Edwards
What about those who also suffer with pain and invisible illnesses?
Readers are still writing to me, 18 months after publication to say that the book has made them feel less invisible and less alone; that it has validated their pain in the face of dismissal and disbelief. I am often moved to tears by the courage of these correspondents. I always respond and many write back. I’m thrilled to be a witness to the invisible chronic pain community coming out into the open.
Not only pain patients have written to me. I’ve had emails and letters from sufferers of mental and emotional pain, and other chronic afflictions. It seems that there is a hunger for informed, personal, meditative writing on illness of all descriptions.
After all of this… what’s your next project?
There’s not much to say about my current writing, apart from the fact that it takes the form of an extended poetic narrative, and explores the roles of art and the imagination in displacements of the body and soul.
