
BRUCE AND EPIDERMOLYSIS
BULLOSA

Living Independently
As printed in the Spring 2001 issue
of DebRA Currents

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Just outside my House with my cat Digit.
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Being a single RDBer
and accustomed to living with my parents, it was not until I started dating
that I began to have thoughts of owning a home. I met my future bride,
a Texan with Cerebral Palsy, through a dating service and our relationship
flourished. After a few years we started to consider being together in
a more conventional way, as our relationship was long distance with me
living in Indiana and my girlfriend in Texas. Habitat for Humanity seemed
like the answer for us.
Any house in my area
would need a lot of work to make handicapped accessible and would be too
expensive for our budget. Habitat for Humanity builds affordable, quality
homes that are handicapped accessible. After filling out the paperwork
I waited three months for an interview. At the interview I had to explain
our reasoning for wanting a Habitat Home and also had to decide if I would
still want the house if something were to happen to our relationship.
I was finally at the point in my life where I could answer. "Yes,
without my girlfriend I still want to live on my own." Within two
months I was accepted into the program.
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My beautiful home :-)
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Instead of monetary promises,
Habitat requires "Sweat Equity" volunteer hours to put into
getting a house. I had to do 250 hours of work for my home. Usually Habitat
requires participants to do work on they own homes. However, since I couldn't
do that kind of physical labor, I did office work, took part in fund raising
events, and worked on any event with Habitat that would count for the
hours. My father and uncle were able to do work on the house and donated
these hours toward my quota.
Complications then arose
to keep me from receiving my home for several years. While I was second
on the list to receive a home, there were other families in greater need
of homes than I, and my marriage began to fail, with my wife and I eventually
divorcing. During this period I was becoming ill and learned I had Squamous
Cell Carcinoma. At times I was worried that I wouldn't get better and
that I might lose the house before I even got to enjoy it. While I had
to wait longer for the house, I was in fact glad to be able to finish
my hours and wait for an available house and I had time to heal and get
back on my feet.
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Outside the garage door.
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On April 7th, 2000,
I signed the papers for my house and moved in within two weeks. After
living with my parents for 33 years it felt strange to be on my own and
I had doubts in my ability to live on my own, but knew it was the right
thing to do. I have been on my own for eight months now, and have adjusted
quite well. I thought that loneliness might bother me but my cat, Digit,
is a friendly companion to have around the house and the comfort of my
ability is security enough. The independence is a relief and I'm enjoying
having space I was unable to have at my parents' house.
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