The Canadian Jewish News
Disabled author asks that we look beyond the physical
By JANICE ARNOLD, Staff Reporter
Thursday, 29 May 2008
MONTREAL - Romy Shiller was a fit, health-conscious woman, held a PhD and a creative job she loved, and valued her independence.
In 2003, she was diagnosed with a non-malignant, but life-threatening brain tumour. Surgery was naturally risky, but she was told she would likely be back at work in 15 weeks.
Shiller came through the eight-hour operation at a Toronto hospital, but a few days later, following a procedure to ease drainage, she lapsed into a six-month coma. Doctors told her parents to prepare for the worst.
After gradually regaining consciousness, she could not speak for weeks more and survived on a feeding tube for 11 months.
Five years later, she still has major physical disabilities (a word she does not shrink from). She uses a wheelchair, the left side of her body is weak, movement on the other side is difficult to control, speech does not come easily, vision in her one sighted eye can be wonky, and care must be taken in chewing and swallowing.
Shiller has just published a memoir You Never Know, a frank and good-humoured account of her long road back to some semblance of normalcy. She reveals a fatalism that has granted her the serenity to accept - more or less - what has happened, while determinedly working to regain as much as she can.
Her resilience and positivism have surprised her. She hopes her example will help others coping with disabilities and illness, as well as change the attitudes of the well and able about what makes a life worth living.
"I know my current situation is quite dire to many people, and I have left quite a bit behind, but the alternative is harsher. I am here, and no matter how yucky it gets, this is so much better to me than nothing," she writes.
Writing the book was a labourious task, not because she found it hard to find the words, but because she could type with only one finger, and a bent one, at that. She had been a writer on pop culture before getting sick.
After years of hospitalization and rehabilitation and then living with her parents back in her hometown of Montreal, she recently moved into her own apartment, managing with the aid of full-time attendants. She continues to work daily with a team of therapists.
Her sharp intellect, memory and lively personality are intact.
Shiller insists she is not angry or depressed about her situation. In fact, she calls herself blessed and finds that she laughs now more than she ever did. And she is not on any mood-enhancing medications, she notes.
"I am not always happy, but I do manage," she writes.
Shiller knows she is lucky to have parents, Lillian and Bryant, who are able to provide for her emotionally and materially (the memoir is dedicated to her mother who was at her bedside daily while she was comatose), two supportive brothers and a circle of good friends.
Although not religious in the strict sense, her Jewish identity and knowledge of her maternal grandparents' Holocaust survival give her strength. She is a believer in prayer and psychic phenomenon.
Shiller, a single woman, was always unconventional; her dissertation was on theatrical drag. She had an open mind about the off-beat.
She muses that this understanding of what it means to be marginalized may have helped her to adjust to her condition today. She impishly refers to herself as being in "disability drag", but pain underlies the self-deprecation.
Her message is serious: don't judge people by their physicality.
She is frustrated by how she is often misperceived, even by those who mean well. Too many think her mind must be as impaired as her body. She senses the condescension and discomfort.
Romy decided to launch You Never Know in a public venue and, though it was a trial, to speak there.
She wrote: "What I think I have is insight, which I am more than happy to share. I do not want anyone to feel sorry for me now. I do not want pity. I do want respect, compassion, empathy."
She wants people to know that her life may not be a bed of roses, but she is coping. "Maybe I am just more aware of the possibilities for happiness than I used to be. That is not to say everything is dandy. It is not, but I do, to use an old cliché, see light at the end of the tunnel. Not only that, but I find ‘the light' in the here and now."
A percentage of the sale of You Never Know will be donated to the Brain Tumour Foundation of Canada.