I saw a program the other day about a survivor from 9/11. She was a young woman who had been very badly injured. The doctors gave little hope for her to live, let alone walk again. With tremendous courage and hard work, she beat the odds and actually got to the point where she could walk unaided. She still lives with a great deal of pain and walking is still a difficult challenge. When asked what her greatest difficulty was, she said that she felt different from everyone else, that she no longer fit in. Something inside of her had been broken. Her words reminded me of a jig saw puzzle. She felt that the various pieces that made her "her" no longer fit together. A puzzle consists of an image that has been cut into pieces and the goal is to put them back together again so that they form a whole. It struck me that the image could be cut up in many different ways and still form a whole. Each piece of us still retains its own integrity and all are important in defining who we are.

In my early years of living with RSD I could only think of the holes that the syndrome had caused. I felt that I had lost so much that nothing could ever be whole again. At first I hoped that intensive physical therapy would put me back together. But my symptoms only worsened and the physiatrist finally said there was nothing he could do for me. I felt like Humpty Dumpty. If the physiatrist (along with all the king's horses and all the king's men) could not help me, that meant I would never be the same as before. My image of myself would have to be changed and I had no idea of how to do that. There was no room in my imagination for a woman who was permanently disabled. I had put my life on hold all this time, believing that I was working hard to overcome something that I was now told could not be overcome. All the pain and hard work had come to nothing; in fact, it came to less than nothing. Now I had a leg that was terribly distorted, a foot that was so deformed no footwear could contain it. I could not bear to look at it. I could not accept that I would always remain "different". If I could not accept myself how could I expect acceptance from others?

How many of you feel different than before you had RSD? Different not just within yourself, but different from those around you? So different that you no longer seem to "fit in" with others? Ours is a culture that celebrates youth and with it, physical ability. It is a culture that requires us to frenetically fill our days with all kinds of activities and perform all kinds of roles. Often there is little time left over to think and reflect. We tend to define ourselves by the roles we play: mother, daughter, employee, tennis partner, husband, brother, friend, and so forth. With these roles come various responsibilities, many of them physical in nature. These responsibilities define a pattern for our lives. The tasks required of us are pretty well defined and we don't have to think much about them. There may be times when all of these responsibilities seem overwhelming, but that is a problem we can share with others because it is one that we all have in common.

Along comes RSD and with it the disabling pain, the loss of movement in one or more limbs, the fatigue and all the other various signs and symptoms that are part of the syndrome. At the least, these can interfere with the performance of some of our roles, at the most it can remove the ability to perform these roles altogether. We no longer know who we are or how we should be with others and others don't know how to be with us. It can be very hard to accept the physical changes to our physical selves; a once able-bodied man confined to a wheel chair, a mother no longer able to hold her child, an artist who can't pick up a paint brush. All the underpinnings have been removed. We must re-define ourselves not in terms of what we can no longer do but in terms of who we are. Our physical abilities can change over the course of the disease, but who we are, the very essence of what makes us a unique human being, is still us.

We are left with a very big challenge, one that stands apart from the challenge of dealing with the health issues of our disease. We have to reintegrate that which makes us who we are with the reality of what we can and can no longer do. One luxury a chronic disease affords is more time to think about these things. My world has necessarily become smaller. My legs no longer take me where I want to go so I have to wait for things to come to me, appreciate what is in my immediate surroundings, or use my mind and imagination to go other places. In other more primitive culture, roles were created for the sick and disabled. It was assumed that since they could no longer work, they had time to think and gather wisdom. That wisdom was used to help others in the tribe and so they had a new role to fulfill, one that came with respect and admiration. It seems to me that that same philosophy can be used to rebuild and create roles for those of us who have RSD.

When I was in college I thought that someday I would write the "great American novel." As the years passed, that dream was forgotten, replaced by the practical needs of earning a living and raising a family. All of us have dreams that we gave up because our roles demanded that we fulfill other kinds of responsibilities. Now could be the time to re-define what we consider work or success, and rekindle those dreams of long ago. I may never write that novel, but I am using my writing in a way that is fulfilling to me and, hopefully, helps other along the way. Doing this required letting go of some of my preconceived notions of how a life should be lived. Brought up with the idea of the Protestant work ethic, I needed to see that much work can be done in a more passive way. I have become more of an observer, listener, and thinker, using my observations and thinking powers to do problem solving. I have learned to accept that this is important work, even if others cannot always see the results. I may not be able to go to my office every day, but I can use the computer to stay in touch, to answer your emails, to write, and do research.

Because I am doing things that are interesting, I have interesting things to talk about with others. I no longer center my life around my RSD and others no longer see me as being so different. I can hold up my end of a conversation and be fun to be with, even if I can't engage physically in ways that I used to. In short, I have redesigned some of the pieces to the puzzle so that it once again forms a whole. It is still a struggle, and I have lost some friends along the way. But I can once again respect myself. Redefining the roles I play has allowed others to respect me as well. There are still areas that need work, but I feel as though I am getting there. The process is a fluid one because RSD never stays the same. I may lose still more physical abilities, but I believe I'm in a better position to adjust to that.

RSD is a chronic syndrome, one that (barring a cure) could be with us in some form or another for the rest of our lives. That means we have to reshape our lives, to work with the puzzle pieces until they form a whole with which we can feel comfortable and proud. We need to replace old dreams with new ones, ones that may actually be closer to who we really are. It is the reshaping of the old piece into new ones that gives continuity to our lives, that show ourselves (and others) that we are still human beings who have needs and desires aside from our illness. Although RSD may set us apart in some ways, we still remain firmly connected to the greater human community.

RSDSA Review.