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Breathing Room has lots in store
for the year. If you would like to share your personal
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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
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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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The Breathing Room Continued
At 19 I did leave home and except for the intrusion of two brief
failed marriages, I continued to spawn spaces for myself. When I turned
thirty
I finally found a relationship I wanted to sink roots with. Five years
after
sharing his two bedroom apartment, my father generously helped us finance
the
purchase of a cozy two bedroom bungalow. On a tree-lined neighborhood in a
university town, our house was big on charm. Sunlight pooling on hardwood
floors, a wraparound garden path, fire blazing in a stone hearth. But with
three narrow closets and the second bedroom no bigger than an
afterthought,
space was an issue. For eight years I survived by transforming our
matchbox of
a second room into my office slash private space. My clothes dresser
engulfed
the length of one wall, aluminum framed windows dominated another and my
computer desk jammed like a puzzle piece against the remaining wall.
There was
just enough floor space for me to do stretches and at times, nurse my
tempermental lower back. Mostly none of that mattered because at least
it was
a place I could close myself off when too much tv watching with my husband
rendered me braindead, where I could read novels about brave women, or
sometimes just sit in the darkness, embracing my loneliness. However,
with
both my husband and I having disabilities, an accumulation of machinery
and
caretakers begun crowding our house. The arrival of my four foot oxygen
cylinder on a permanent basis and the knowledge that my genetic disease
was
worsening created an urgency for more space. A real room to enliven my
spirit,
to enrich the time I had left.
We met with an architect named Amy. With hair sweeping past her
waist,
Amy's design mind swirled through our cramped quarters and she conceived
an
ocagonal space resting on what was now an unplanted patch of earth,
choked by
weeds. I wanted my new room bathed in light, with a glass door and
windows on
both walls, celebrating southern exposure. And I swooned with pleasure at
the
inclusion of my own bathroom putting an end to "oh, excuse me"as I'm
barged in
on for the umpteenth time by my husband's attendants.
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