Thank you Ginnie, Dr. Smith, and Mrs. D. for your encouragement. My difficulty with defining quality of life is compounded by my childhood. I was unwanted, an embarrassment, raised with an overwhelming sense of shame, the root cause of which I did not understand until much later by which time I had completely internalized it. My mother had been unfaithful to her husband for many years, and I was the product of her adultery. By my teen years I was more than ten inches taller than my father, making it very obvious, though I doubt that anyone in town except me was ignorant of what was going on. I was, from the beginning, a mistake, an idea so firmly rooted in my consciousness that my husband in 33 years of devotion has not been able to convince me otherwise. The irony is that I inherited this CMT as well as the autism spectrum issues from my biological father who never acknowledged me as his daughter, leaving a very large estate to his real family.

I have a tendency to logical, linear, literal, and rigid thinking, which does not help when trying to define quality of life. My first criteria would be what I can do for other people, now distinctly limited, at least in an active sense. A good listener I am still the sounding board for my husband and children, sometimes a few friends, and my husband is frantic to secure my company if nothing else, he still finds my companionship as indispensable as when we were 18.

My second criteria would be my ability to create. I always assumed that when the children were grown I would have time for enormous projects, lace, quilts, etc. but I find that my arms have started to deteriorate much more quickly than I was prepared for, and I accomplished far more when I had three babies under four than I do now. This disease has entirely changed what I anticipated these years to be like. I expected to be in a wheelchair. I did not expect my hands to go numb after a few minutes. Needlework has been my obsession since I was four or five, my sole companion in childhood. Since it now takes up a much smaller part of my time and thoughts, I feel a distinct sense of loss, not just of my abilities, but of the enjoyment of it, the pride of craftsmanship. Uncomfortable with myself I could be justified by my accomplishments.

My husband and I met as freshmen in an honors program when we were 17. He has always known that I find life psychologically painful, being on the autism spectrum, always socially at sea. We created a life in which I was indispensable, homeschooling five children, so I couldn't check out, exploiting my strong sense of justice and responsibility. Now that I need more help than I can provide, or will soon, what becomes the anchor?

We are experimenting with this, traveling more while I can, trying to build at least one or two enjoyable activities into each day. Going to restaurants is fun, but can really pack on the pounds, which I have to guard against as weakened muscles cannot support extra weight.

I know that I am fortunate to have a devoted husband and children who help and care. I do not want to hurt them, but I have never been comfortable with myself, and the addition of pain and disability complicates an already complicated sitution. Conversations like this one are very interesting as well as helpful. I am very interested in everyone's viewpoint here.

What makes a day enjoyable for you? What adds quality?