A few weeks ago I came across a wonderful program on our local public television station, "Live in Tuscany", which featured the tenor, Andrea Boccelli, singing arias as well as popular songs in an evening concert in his hometown of Tuscany, Italy. Knowing that Mr. Boccelli had been blind since childhood, I watched the show with keen interest. Throughout the program videoclips of his life were interspersed between musical selections; he was seen walking through the vineyards with his father and brother, strolling along the beach accompanied by his wife and small son, and finally playing chess in a sunny courtyard with his friends. A blind man playing chess? Now that really caught my attention. Here was a man with a major handicap enjoying apparently normal life as well as handling the demands of being a rising star in the entertainment world.

As I watched the program I could not help but wonder how a blind child gets from what must have been the most devastating day of his life, the day he learned he would be blind forever, to the day when he is a critically acclaimed singer performing a concert on television. Obviously, the onset of blindness would have put an end to the normal boyhood dreams of being a fireman, an astronaut, or a brilliant soccer player, However, Andrea had other God-given talents and gifts which perhaps may have lain dormant had he realized one of those dreams. Andrea's parents apparently recognized his musical gifts, realized his potential, believed in him, and supported and encouraged him to develop his magnificent voice. In order to go on and build a future based on this gift, though, Andrea first had to reach a point where he accepted the reality of his circumstances.

Sarah Ban Breathnach, in her book, "Simple Abundance", calls acceptance "A surrendering to what is in our circumstances, our feelings, our problems, our financial status, our work, our health, our relationships with other people, the delay of our dreams". She believes we have to understand that before we can change anything, we have to recognize that this is the way things are meant to be right now. She calls acceptance the "long sigh of the soul"; a time of closed eyes, prayer and perhaps, quiet tears. We reach acceptance , a crucial part of our journey, when we are able to say, and believe, that despite our troubles "everything is going to be all right". This was probably the most difficult stage of Andrea's journey to a new life and is ours as well.

Sometime after this program was over, after a period of reflection, I asked myself, could it be that blindness was not something that happened to Mr. Boccelli, but for him? I know this may be difficult to imagine, but bear with me. In some pervasive way can we actually be grateful and even rejoice in a handicap, or the loss of something precious because it leads to discovery, development and sharing of an equally precious gift. Though Andrea's sight was precious to him, his voice has now become precious and an inspiration to millions of fans all over the world as well as a substantial source of livelihood for his family. As Joseph Campbell once said, "We have to be willing to get rid of the life we have planned so as to have the life that is waiting for us".

Applying this train of thought to dystonia, is it possible that in some cases our condition is not what happened to us, but what has happened for us? My life has changed quite dramatically for the better since I developed spasmodic torticollis and I am beginning to think that ST is something that happened for me. ST, though admittingly devastating, has over time had a very positive effect on my life. I have been forced to carefully examine my values and to re-evaluate and reorder priorities. This process has helped me make decisions that have enabled me to survive and find my way to a better life. I have found previously unrecognized gifts and talents, stretched my wings in new pursuits, and achieved some life-long dreams. Ten years ago when I developed spasmodic torticollis I thought that my life was virtually over, that I had no hope of doing so many things I dreamed of. Today I am living some of those dreams and have hope of accomplishing others in the future. Though I realize that dystonia affects us all differently and to varying degrees, I think this idea is worth some consideration.

Do you have hidden gifts and talents? Are there unspoken dreams? Are you frustrated and saddened by the thought of what you are missing in life? Is it possible that you may need to give up the life that you had planned (or had) for the life that may be waiting for you? How about making a "25 Things I Want to do Before I Die" list to clarify some of your dreams and to get you motivated to accomplish some of them. Perhaps it is not the ideas but the courage that is lacking. Share your dream or goal with someone you trust and enlist their support in helping you get started.

Do you surround yourself with what I call "doomsday" people, the naysayers who criticize your efforts? Or do you associate with "resurrection" people; those who have a positive outlook and believe there just may be a way around most obstacles? This type of person believes in us, is supportive, encourages us to be our best, to stretch, to grow and to try new things.

Perhaps you would like to connect with others who understand what you are going through. Do you know others with dystonia? I have met the most wonderful people since I developed ST. In fact, it is hard to imagine what my life would be like today without the network of positive, supportive, encouraging friends out there in the dystonia family. If you are feeling alone and isolated, reach out. Call the DySTonia toll-free line at 1-888-445-4588 and ask if they know of a support group in your local area. If none exists, ask your neurologist to help you start a support group by mentioning it to all of his/her patients with dystonia. If you receive care at a University affiliated medical center, it is likely that they have some sort of community newsletter published monthly. Ask if they will post a notice to see if there is enough interest to begin a new support group. It only takes two or three and a desire to be a support to one another. Once the word gets out, you will be joined by others grateful for the chance to meet and share experiences. If you have a computer, get on-line and connect with others on bulletin boards such as the Spasmodic Torticollis Bulletin Board or the Alt Dystonia Bulletin Board. Participants are great about sharing their experiences as well as their website finds. Collect e-mail addresses and keep in contact that way, too. Have courage and faith and take some steps to discover what the new life waiting out there may have in store for you.

Susan Glass

31030 Bedford Dr.

Redlands, CA 92373