As our lives and physical limits change with this disease, so must our hobbies and interests. We may have to do what we can do instead of what we want to do.

Aside from the pain associated with CRPS, many of us suffer from the losses that the physical limitations inflict upon us. As my CRPS has progressed, so have my limitations and it has been a challenge to recreate myself, to call upon my inner resources, so that I can still have a meaningful life. I have found that reading a book or learning something new can be as exciting as traveling to another country. In the beginning I was able to lead a normal life, just at a much slower pace. As the disease has evolved, I have had to evolve as well. For example, I became very involved with photography. I bought myself a camera (actually several cameras), took some courses, and even built a dark room in my bathroom. I found that when I was behind the camera lens I no longer had a body and therefore had no pain. It is a phenomenon I can’t explain. The whole world seemed to disappear and I only existed in that moment.

Becoming so involved with photography broadened my social life as well. Taking courses was a way of meeting new people who shared the same passion. We critiqued each other’s work and in that way my talents grew. I was even hired to do some photo shoots and took great pride in the results. There were often times when the pain was just too bad to do anything, let alone concentrate on taking a photograph, but more often it took me away from myself and provided a great deal of pleasure. However, finally I couldn’t stand or walk unaided and so the spontaneity of hand-holding the camera was no longer possible.

I mourned the loss of photography for a while but then, with the birth of my grandchildren, I took up knitting and sewing. I even learned how to design my own patterns. On the Internet I found designs several hundred years old, so it became a history lesson as well. I even signed up for a knitting cruise. We went to Alaska, did some sightseeing, and while the ship was sailing, took different knitting classes. Again I made new friends. I kept my mind occupied with colors and designs as well as the execution of the garments. As an added bonus I got to see my grandchildren wearing what I made.

Unfortunately, I had a tumor in the macula of my left eye which burst and left me with vision too poor to work on the intricate sewing and knitting pieces. So then I decided to write a book. I had always dreamed of being a novelist, but when the opportunity came along to have a book published on CRPS, I grabbed it. It took up almost all my free time for a year because I had to do a tremendous amount of research. I realized that many of the scientific details were too difficult for me to explain to others, and so I asked Dr. Peter Moskovitz to help me. Collaborating on the book made it even more fun and helped assuage the tensions that began to develop between me and my editor. When I read the book in its published form it was almost as if someone else had written it. I think the experience of writing the book was very much the same as being behind the camera lens—someone else seemed to take over and I was not aware of “me” mentally or physically. The added bonus of the book is the wonderful feeling of knowing that your efforts have helped others.

RSDSA Review. Fall 2006.