For nearly fifty years, Suzanne Visser lived with severe lower back pain
without knowing its cause. Doctors, specialists, therapists and alternative
practitioners offered explanations: posture, childbirth, muscle tension,
anxiety, wear and tear, repressed emotion, even the joints in her face.
None of them named the condition she had been born with: Bertolotti
Syndrome.
By the time the diagnosis finally arrived, the cost of not knowing had
been immense — physically, emotionally and financially. Suzanne estimates
that approximately $1.2 million had been spent, lost or diverted
through decades of misdiagnosis, treatments, equipment, medication,
special shoes, lost opportunities and the ordinary economic leakage of
chronic pain.
Yet this is not only a story about illness. It is the story of a life built
under constraint: a writer who changed languages, a poet, painter, cook,
publisher and legal scholar who learned to work in fragments, often lying
down, often in pain, and often within windows of only fifteen minutes.
Through motherhood, migration, Japan, Australia, law, publishing, art,
cooking, friendship and late diagnosis, Suzanne’s story asks what can still
be made when the body will not co-operate.
The Million-Dollar Misdiagnosis: Living, Writing and Creating with
Bertolotti Syndrome is a memoir about chronic pain, medical dismissal,
time, creativity and survival. It offers recognition to those still searching
for a name for their pain, and a clear-eyed account of how a restricted
body can still contain an intellectually and creatively expansive life.
The Million-Dollar Misdiagnosis
Suzanne H Visser is a Dutch-born Australian writer, poet, painter, publisher and legal scholar. She began her writing career in the Netherlands before later making Australia her home. Her work has crossed languages, countries and genres, including fiction, poetry, essays, legal scholarship and non-fiction.
Suzanne is the founder and director of Clear Mind Press, an independent Australian publishing house. Through the press, she publishes books that are intellectually serious, socially engaged and often difficult to place within conventional commercial categories. Her own writing includes literary fiction, poetry, books on justice, creativity, ageing, and the human search for meaning.
She completed her doctoral work in law on the concept of Sustainable Justice, exploring how legal systems might respond more adequately to complexity, long-term consequences, ecological responsibility and human wellbeing. Her legal scholarship is shaped by a lifelong concern with systems that fail to see what is directly in front of them.
Suzanne was diagnosed with Bertolotti Syndrome after nearly five decades of chronic lower back pain and repeated misdiagnosis across several countries. Much of her work is now done lying down, in carefully managed periods of concentration. Rather than allowing severe physical constraint to define the limits of her life, she has continued to write, publish, paint, cook, study, sing, swim and build creative structures around the body she has.
After many years in Alice Springs, Suzanne now lives in Queensland, where warm water, a generous garden, fresh produce, friendship, choirsinging and art form part of her continuing practice of living with pain without surrendering the whole self to it.
