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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.