After raising three daughters, volunteering in public school
special education classes for eighteen years, and sitting on
several Boards serving people with various disabilities, Jean
Phillips finds herself confined to a hospital bed in her small
living room with no hope of ever moving independently again. She
feels like she is in jail. As a polio survivor, she knows she had
been pushing her body to its limits with all her activities, but
saying no is not easy for her. Now she has been felled by an
accident and the debilitating effects of Post Polio Syndrome. She
reads through the journal her mother kept during the years Jean was
in and out of hospitals as doctors tried to restore mobility to her
legs and feet. She cannot remember when she was only four and awoke
one morning with a high fever, unable to walk. Soon, though, her
mother%u2019s words match her memories of her childhood. She is so
happy to finally come home from the hospital that first time, and
she works hard with the physical therapist who visits every day.
Her mother is thrilled when she can stand holding on with only one
hand. Progress is slow, but her mother%u2019s faith and Jean%u2019s
determination keep them from being discouraged. Although she
gradually regains some strength, and is able to walk with crutches
and braces, doctors feel more can be done. She is accepted as a
patient by Shriner's Hospital when she is seven years old.
Immediately she is put in a cast from her neck to below her hips in
an attempt to straighten the spine. No visitors are allowed inside
the hospital, but twice a week they visit through the window from
outside. Jean's father gets a ladder so they can be closer to her,
and they use a Walkie-Talkie device to communicate. Her first
surgery is to fuse her spine, and her parents wait anxiously until
they are allowed to call at 6:00. They cannot visit her until two
weeks after the surgery, and the wait is very hard for the whole
family. Two months later she is home in a body cast. So begins a
childhood spent between home and hospital. There are many more
surgeries and casts. A treatment called "wedging," is perhaps the
most painful she endures. The diary ends when Jean is 16, and no
longer eligible for the services of Shriner's. Two years later her
mother dies, and leaves the family reeling. Without the guidance
she needs, Jean gets pregnant and enters into the first of two
lonely, loveless marriages. She tries to say and do what her
in-laws want, but she knows they only see her disability. After her
second divorce, she and two of her daughters follow a man to
Michigan, looking for the "true love" that has evaded her. When he
deserts her, she returns to California and decides to volunteer in
her youngest daughter's special education class. She finds she
loves the work. It is close to a dream she has always harbored of
running a pre-school. She joins the Board of Directors of Far
Northern Regional Center, serving people with developmental
disabilities. With others, she works to end abuse of disabled
people in care facilities. She is deeply involved in community
projects when she breaks her leg. Given the added complications of
Post Polio Syndrome, her doctor says she will never leave her bed
without assistance. This is her newest challenge: can an
independent, dynamic woman find happiness when her body no longer
has the strength to carry her.
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