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Breathing Room has lots in store
for the year. If you would like to share your personal
stories, news items or poetry with us, please contact:
us at: info at thebreathingroom.org.
Stories, Poems
and opinions of participants are their own, and not necessarily
those of the Breathing Room organization.
Please visit
cfmessageboard.com to connect with members of the CF
community online.
Breathing Room
facilitates candid and open
communication between adults with Cystic Fibrosis,
supports the development of a community of adults with CF
and provides education and insight for families, caregivers,
and medical professionals who impact our lives.
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Breathing Room
By Adina Freidan
Adina continues to be an inspiration to me. We met at a Cystic Fibrosis
conference, and over the years developed a friendship via email. We both
started supplemental oxygen at the same time. Her great attitude toward
living life to the fullest despite the debilitations helped me when I just
wanted to hide under the covers. This year is a good example of how she has
helped me. I never would have gotten a wheelchair to ease my mobility -
prefering to hide in my house for good, now that I'm too weak to carry my
portable O2 tank and walk. It was Adina's letters of personal freedom upon
getting her own wheelchair that gave me courage and helped me ease into the
transition of "visibly disabled". Unfortunately, Adina has gone the way of
a growing number of my adult CF friends - she passed away this June.
Toward the end of Adina's life, she began writing personal essays, which
she sometimes shared with others. I think she'd like it published here,
among the other writings of CF adults. I hope you get something out of
it. This one is called "Breathing Room."
-- Michelle Compton
[This piece
was originally posted on the cystic-l email list in 1998]
Peace.
Not out of luxury, but from simple mathematics I grew up having
a
room of my own. A three bedroom duplex equals two parents in one, only
child
in another and spare room for family den. But den life got old real quick
with
evenings endured on a lime green couch, television blaring beside a mother
plagued by manic-depression and a father crowing what a nice normal
family we
were. Thank god for my own room. I spent most of my youth there, waking
up to
forget me not flowered wallpaper, gabbing at all hours on my blue princess
phone and praying to the mirror of my junior miss bedroom set for my nose
to
shrink, my chest to grow. To the croons of Smokey Robinson and the
Miracles,
ooh, ooh, baby, baby, I'd fantasize about the grand life I'd lead in my
own
house with ten dogs and a line-up of gorgeous rock stars awaiting my
summons.
And rare visits only when I allowed it from my parents. Behind those
doors I
sculpted my survival, molding hopes onto a future with room to breathe,
away
from the no way normal family I was part of.
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