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A
Sister’s Journey from Understanding to Activism
I had heard of lupus
when I was in high school, but I had no real understanding of its devastating
power until my sister Maria was diagnosed with the
disease at the age of nineteen.
In
the course of just a few weeks Maria had gone from a healthy sophomore
in college
to a hospital patient,
physically challenged, emotionally
exhausted and completely overwhelmed by her doctor’s diagnosis. Similarly,
my family was overcome. What was this disease? Why did my sister
have it? How would it affect her and all of our lives? We were filled
with questions, but answers didn’t come readily.
This disease, which had crept into our lives like a wolf in the
night, was deceptive and unpredictable. We never knew what to expect.
Yet despite
Maria’s illness, she and our family continued to hope.
Maria
battled lupus for 11 years but lost her fight in 1994. Our
loss was tremendous, but our faith kept our family strong
and still
does to
this day.
Soon after Maria’s passing, I had a long phone conversation with
Patty Guidice, president of the local lupus chapter. Although
Maria had been a member, the family had never been involved with the
group. I told
Patty about my family’s loss and my strong desire to
do something — anything — to
broaden lupus awareness so that more attention would be given
to those coping with the disease and the search for
a cure.
Patty immediately
invited me to the annual lupus symposium. Two days before the event,
one of the speakers unexpectedly
canceled,
and
the foundation needed to find a substitute — and
quick! Patty asked if
I would speak about what it was like to have a family member
with lupus. The opportunity was daunting — would
I be able to go through
with this? — but
I felt in my heart that it was the right thing to do. Surprisingly,
the words came like a flood. I wanted and needed
to share Maria’s
story. In doing so, I was honoring her and celebrating her
life.
Shortly thereafter,
Patty asked me to join the Board of Directors. This time there was
no hesitation. Here was
my chance to
really do something
important; I could make a difference in others’ lives.
I have been on the
Board for eight years, and in that time I have learned even more about
the disease. I have also
met many
extraordinary
people,
and I hope I have spread the word about lupus. Still,
there is much more work to be done.
I will always miss my sister, but I know she is looking
down from heaven knowing that one day we will find a
cure.
by
Jeannette Boccini
2003
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