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Barbara Schaffer
IN 1988, BARBARA SCHAFFER, a 38-year-old vocational rehabilitation
counselor, developed RSD from a minor injury at
work. Although her RSD was diagnosed and treated almost
immediately, the disease progressed rapidly. Exercise exacerbated
her condition, other complications set in, and nothing
relieved her pain. Yet in spite of her worsening physical condition,
Barbara continued working at the job she loved for two
more years (until the program shut down), and began taking
action to help others who were living with RSD.
Shortly after being diagnosed in 1988, Barbara launched an
RSD support group in her area. And in 1992, she published an
RSD newsletter and launched the first RSD website.
Barbara’s group also ran four CME conferences for doctors
and nurses through Geisinger Medical Center, a tertiary-care
teaching hospital in the area.
Two years ago, Barbara worked with others (Rick Ulrich
and Jenny Dye, both of whom have RSD) to get an RSD bill
passed in Pennsylvania. “The bill calls for
educating the public and medical community
about RSD. We were successful because
State Representative Merle Phillips worked
with us. He’d known me and Rick, and he’d
seen what RSD had done to us. Once the
bill was passed, the State Department of
Health held a meeting with providers from
all over the state who treat people with
RSD. The purpose of this meeting was to
find out what the providers wanted done,
and that’s how the outreach program was
developed. New York State put out an RSD
bill the year before, but they’ve didn’t have
Barbara and Paul Schaffer
the money to implement it. In Pennsylvania
the money came out of the Department of Health budget. So
the implementation may not be as good as we would like, but
we do have pamphlets in all the Department of Health sites
and there is RSD information on their website.” Pennsylvania
is one of the three states in the country to have passed RSD
legislation.
Today, at 56, Barbara has had to cut back her activities, but
that hasn’t stopped her from working for others with RSD.
Doctors refer patients to her, and she gives support to them
over the phone. She also contributes her time to RSDSA. Last
year she assisted RSDSA staff in organizing a conference in her
area; she writes articles for their newsletter that focus on RSD
and the arts; and she has worked on the organization’s annual
fundraising dinner.
At home, Barbara spends time with her husband (he takes
care of their three grandchildren while their daughter and
son-in-law are at work). “I’ve been lucky to be involved with
my grandchildren. I’m a big part of their lives, which is very
important to me.”
Barbara is philosophical about the challenges
of living with RSD. “I have lost the
ability to do many of the things that I
loved, and I have mourned their loss. But I
continue to find new things to do and new
ways to do old things. In filling my days
with activities and friends and my grandchildren,
I have learned that there are
many ways I can enjoy life. This is a constant
challenge because RSD is always
changing. But isn’t change one of the constants
of life? I try to remember that life
has made me no promises, that each day is
a gift, and that I get to choose whether I
suffer or enjoy it.”
“ I try to remember that life has made me no promises,
that each day is a gift, and that I get to choose
whether I suffer or enjoy it.” BARBARA SCHAFFER
T H E PA I N P R A C T I T I O N E R | V O L U M E 16 , N U M B E R 1 | 25