Raising the Curtain on Awareness
By Debra Nelson-Hogan
Cynthia Toussaint’s career as a ballerina was ended when
a pulled hamstring led to CRPS. Today she is dedicated to CRPS
awareness and HMO reform.
When Cynthia Toussaint watched Funny Girl the first time,
she turned to her mother and said, "I never want this to end."
From that point on, she says, she knew she was meant to be
a performer. And although she became an accomplished ballerina,
studied acting and piano, her most recent significant performance
was before a Senate Hearing in California to discuss her frustrations
with an HMO system that has consistently failed CRPS patients.
At 21, Cynthia was a ballerina with a promising future, and
considered herself an extraordinarily lucky person until a
pulled hamstring changed the direction of her life. Doctors
told her it would heal with time and rest. Instead, the injury
triggered CRPS, which ended her dance career and began a 15-year
journey through a medical universe that failed to diagnose
and treat CRPS.
That was 19 years ago, and for the first 13 years, “HMO doctors
told me my problems were all in my head while the disease
progressed throughout my entire body, eventually leaving me
bedridden with chronic, intractable pain,” she says. “I was
assured by everyone that the sharp, burning, excruciating
pain in my leg would be OK with rest, but OK never came. Instead
if felt as if my leg had been doused in gasoline and set on
fire. I suffered constant muscle spasm, my leg became swollen,
sweated profusely, and was cold.”
After her injury, Cynthia worked in a Las Vegas illusion act
out of “desperation to stay on stage and hold on to some semblance
of my dreams.” However, the CRPS spread to the other leg and
Cynthia finally moved home to her mother’s house.
“I really believed the doctors at Kaiser Permanente would
help me out of my downward spiral. I assumed they would provide
me with sound medical care and compassion. Instead I was subjected
to relentless abuse and ridicule. For 13 years my doctors
condescendingly told me it was in my head. I continued to
fight for care and my family and friends abandoned me because
I was not believed. The emotional pain became as bad as the
physical. The isolation, the depression, the sadness, despair
and the loss of independence, loss of having a career, loss
of having a child, thoughts of suicide,” she adds.
Her ordeal through the Kaiser Permanente HMO and a series
of physicians who failed to diagnose her condition, led to
a malpractice suit against the giant healthcare organization.
Because her parents had signed away her right to a jury when
she was three years old, the result was a mandatory binding
arbitration. The meeting was canceled and rescheduled and
the hearing delivered a number of abuses: testimony was recorded
on camera, the room was ice cold and the HMO applied pressure
to remove her partner and caregiver from the room. Her suit
against Kaiser, still pending, has strengthened her resolve
to fight for CRPS awareness, disability rights and HMO reform.
“I believe in universal health care. You can't offer incentives
not to treat someone,” she emphasizes.
Finally, in 1995, she was diagnosed with CRPS, her physician
told her she would never get better and prescribed two Tylenol®
twice a day for the pain. She decided there had to be better
information available to CRPS patients and to prescribing physicians.
Cynthia decided to devote her energies to raising awareness
of CRPS, which led her to connect with California Senator Liz
Figueroa (D-District 10), chair of the business and corporation
committee. Although she was put on the back burner for two
years her persistence paid off. On May 11 a senate hearing
was held to exchange information and begin to educate agency
representatives, California State Agencies and, specifically,
Health Services about CRPS.
At the hearing, Senator Figueroa said, "Cynthia discussed
her physical condition and frustration with the HMO system.
Her timing is excellent, because simultaneously, I’ve heard
from various women’s health groups that this is an area to
be looked at. CRPS is one of those areas that women face in
larger numbers than men, and when women go to physicians it
is discarded, as 'it's something in your head’."
Those present seemed particularly impressed by the fact that
Cynthia and her partner of 19 years, John Garrett can't legally
marry because she would lose her SSI standing and her healthcare
coverage from Medi-Cal.
“John and I have been together for 21 years. I consider John
my husband, although we cannot legally marry due to Social
Security marriage penalty. A legal marriage to John would
mean losing my disability benefits and my health care,” she
says. “I'm dedicated to CRPS awareness and HMO reform, both
of which give my life great purpose,” she notes. She and John
are starting a non-profit organization called “For Grace”
for the daughter they will never have. “Without a doubt, I
see awareness in the medical and public communities as the
number one way to wage war. People with CRPS do not have to
live their lives in pain, don’t have to suffer economic ruin;
do not have to be abandoned by family and friends. They don't
have to take their own lives by their own hands-the ultimate
pain killer,” she said at the hearing. She concluded, “I am
entrusting you with the future of CRPS. I’m overwhelmed by
the possibility for change. I see a future for CRPS where another
ballerina will not be cut down at the beginning of her career
but will continue to soar and astound the world with her grace.”