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.
