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A few months ago, was packing my bags for the fifth annual national
Arthritis Introspective Gathering in Sugarland, Texas. Today I, again, find
myself packing my bags and getting ready for another adventure; this time, it’s
a trip to Arizona, to find my new home. I have lived in Milwaukee, WI all my
life. As you may have read in my previous post, I was diagnosed with Juvenile
Rheumatoid Arthritis (JRA) at age 8. As so many of us who live with this
disease, I have become a master at adapting. When I was no longer able to reach
my feet, I bought a sock aid and slip on shoes. When I began to have problems
getting in and out of the shower, I bought a bath chair. I have an arsenal of
adaptive devices that help me stay independent. Yet, I still take comfort in
knowing that help, that family, is only a phone call away. If I flare and need
someone to pick up my medications or take out my garbage, I can call a loved
one. If I have surgery, I have my Mom to help me recover. This has always made
me feel safe. It has always been comfortable. After attending the 2012 AI
Gathering, I decided that there are some things more important that being
comfortable.
Since my first visit to Arizona in 1999, I have dreamed
about moving out West. Most of my Arthritis Introspective friends are
transplants, having escaped apocalyptic snowstorms, icy sidewalks and sticky
summers for the “dry heat” of the desert. I have always said “someday.” Not
really knowing when that would be. I had a job. I had family and friends. I had
school. I had arthritis. The “what ifs” were always somewhere in the back of my
mind. What if I flare? What if I need another operation? What if I can’t find a
good doctor? What if…
Four years ago, the disease had progressed and my right hip
needed to be replaced. After five years as a fundraising and event coordinator
for the American Cancer Society, I could no longer keep up with the physical demands of
the job. I went on long-term disability and it was one of the most difficult
decisions I’ve ever made. We are a society that measures people by their
occupation. Without that title, I began to wonder what I would do with the rest
of my life.
Luckily, I had Arthritis Introspective. I worked with Kevin
Purcell to get the organization off the ground, working by trial and error to
develop a vision and mission for the organization and striving to connect with
others living with the disease in the prime of life. I had a support system. I
had others who understood what it was like to no longer have to set the alarm
in the morning. And I dreamed of Arizona.
We all have times in our lives when something whispers in
our ear and we know that it’s time to act. This happened to me at this year’s Gathering.
The weekend was full of information and empowerment, with sessions both
emotional and educational and always entertaining. From communication and
intimacy to advocacy and medical advancements, the programs offered something
for each of us. Yet as always, my biggest highlight was meeting so many new,
amazing people. For the first time, half of those who attended were new to the
event and several were newly diagnosed. Many of were frightened, frustrated and
unsure how they would make it through. I couldn’t tell them when it would get
better or divulge some great wisdom that would turn the sky to rainbows and
butterflies. But what I could do is share my story and assure them that though
life with arthritis is challenging, we all eventually find our own way to cope.
And by finding a community of shared understanding we also, find hope.
Throughout the years there have been people who have called
me an “inspiration.” I always felt rather uncomfortable with that title, as I
have simply lived my life as best as I can, sometimes I do a better job than
others and I have had my share of dark times. Yet what I’ve come to realize is
that perhaps part of my life’s purpose, part of the answer to the “why” all of
us ask at some point or another, is that I am here to show others that they
don’t just have to survive life with arthritis, but they can find new ways to
thrive.
With that in mind, I realized that with the national AI
headquarters located in Arizona, its time for me to follow my passion to find
my purpose (in the words of TD Jakes). I feel that I can do the most good among
people working for the same mission. So in two days Phase One of “Operation
Relocation” begins as I spend a week getting used to the Arizona heat and
shopping for an apartment that is accessible and has the accommodations I need
to remain safe and independent. Of
course I have fears; what if I get sick, what if I’m lonely, what if I hate the
desert, what if I miss my Mom? But the “What If” I fear most is the “What If I
Never Try?”
Besides, Mom can always come to visit.
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