July 2010 marked the second anniversary of my retirement from a forty year career in social services. It also marked the beginning of the most challenging and difficult chapter of my life.
It began with a collection of odd symptoms including but not limited to severe back pain, abdominal distress, palpitations, muscle weakness and neuropathy in my feet, legs and hands. Eventually, I became so weak that I was unable to walk. It took several months to reach the right doctor, a neurologist, who conducted the proper tests and made the diagnosis of CIDP (chronic inflammatory demyelinating polyneuropathy).
CIDP is a rare autoimmune disease (two cases per million) in which the immune system destroys the protective coating around the nerves, called myelin, leaving the nerves exposed and inflamed. Treatment consists of high doses of prednisone to reduce inflammation, infusions of gamma globulin to suppress the immune system and therapy to improve muscle strength. The condition is painful and debilitating. Recovery is slow and arduous and may not be complete. Doctors have told me that myelin grows back and nerves regenerate but at the rate of about one inch per month.
In all, I spent eight months in hospitals and rehabilitation centers where I was bathed, dressed, diapered and transferred from the bed to a wheelchair by two attendants using a Hoyer lift. There was little I could do for myself. Basically, I required total care. Practically overnight, I went from total independence to nearly total dependence. It was humiliating. It was awful. Even as a child, I liked being independent and doing for myself as much as possible. And like many first-borns, I liked being responsible and in charge. I was proud of my independence. It defined me.
When I turned 50, I realized that I was no longer “young and cute.” I needed a new definition of self. So I decided to be “powerful” and it spurred me to accomplish great things in the world. Now that I am 71 and disabled, Who am I? How do I define myself? And what am I going to do with that new “self” in the time I have left?
When it was time to leave the rehab center, I returned home to rooms that had been re-arranged to accommodate my wheelchairs, both manual and motorized, a hospital bed that replaced my queen-sized bed and its beautiful custom bedding, and an office that had been made into a bedroom for a woman, named Eunice, who had been assigned by a home care agency to live with me and take care of me. Although some feeling had returned to my legs, I was still not able to move them. I was still unable to use the bathroom or dress myself or prepare meals for myself. Basically, I still required total care. With Eunice’s help and continuing therapy, I have made great strides, but I still have a long way to go in order to return to my previous state of independence.
Soon after returning home, two of my dear friends were determined to get me back in the world. That meant helping me learn to get in and out of a car. And it meant helping me gain the confidence I needed to use the motorized chair to negotiate the streets around my home. Fortunately, I live near the center of a town that has a lot to offer, so we went to local restaurants, shops and movies. My friends also drove me to camera club meetings so that I could renew friendships and keep up with my photography. People called and came to visit and slowly I rebuilt my life.
At first, it was awkward to go into town as shopkeepers who knew me before I got sick saw me in a wheelchair accompanied by an aide. Some had the courage to ask what happened; others did not. Children were curious and mothers tried to stop them from staring. I realized that I needed to help put people at ease, so I became friendlier than usual. I smiled more, initiated conversation and invited children to see how the chair worked. I also began carrying my camera, not only to take pictures but also as a conversation starter. I made friends with store owners by asking them if I could take pictures of their window displays, and then I gave them copies of the photos. The more comfortable I got with being in a wheelchair, the more comfortable others became. Now I am a fixture in the neighborhood, the “lady in the wheelchair with a camera,” and I am just part of the normal landscape of downtown.
So who is this new “Self?” Essentially, I am the same person, I just don’t walk. I’m still upbeat and optimistic, curious and open to new ideas and opportunities. I still enjoy the company of friends, including those on Facebook. I still enjoy learning and exploring, even though my world is smaller. And I still enjoy an adventure, even if that now means crossing the street to go to the library or learning to take a bus to the mall. So I am way past young and cute and I am no longer powerful. Just like anyone else my age, the self-definition now is “wise” and the new purpose is legacy. This is a more personal legacy than the one I left behind at work. This legacy is about what I leave for my family and friends, for the town I live in and for the body of knowledge about my physical condition. This includes family history, books of photographs taken around town and educating people about this terrible disease that has invaded my body.
Fortunately, I have memories of some very great adventures and the pictures to prove it, and who knows, maybe one day I will be able to travel again. I would surely like to. As Eunice, in her wisdom, reminds me, “There is a time for everything.” I guess it was time for me to give up some independence.
For more information about CIDP, go to www.gbs-cidp.org.
