I never allowed my self to plan a future as an able bodied adult. I have always planned my future around my illness, but my progression has been so slow that I now feel I will be here for a cure. My friend Sharon sent me stem cell procedures being done in other countries, for a hefty price, at http://www.cellmedicine.com/. This is not something I'm not comfortable with at this stage of my illness. If I had only a few years, I'd probably be on a plane next week.
I wish I knew diary why I have been so blessed in my survival because I know the norm is 3-5yrs. I feel guilty as I see people lose an ability every month, while I sit here planning to move toward a dream retirement. When that "hands on healer" put her hand's on me years ago she said "I cannot heal you because you have become your illness." I remember feeling pissed that I had wasted my time. She continued by saying "until you let go of your illness you cannot be healed." Her words haunted me for months as I tried to deny their truth. She healed me in a way that day, but not my ALS, my mind. Along with my faith, love and a different attitude, I've made it to see a shot for a cure in my lifetime.
I'm dreaming of the possibilities of a future now. I'm thinking of the young people living with chronic illness in their families. The little soldiers who lose a part of their carefree childhood. I'd love to do a mountain summer camp, where these kids can hang with other kids that understand how life and death stress can change you. I'd get counselors, pastors, speakers and stress free FUN. I would love if Dave and my children could be apart of it, sharing their own stories of caregiving. A family business of healing with fun and no stress. So many people are getting sick in families. With so many two income families, single families and crap health insurance, the children get lost in the frey.
I'm not sure my family and friend's ever think that far into the future with me. I've been keeping my eye on the research and have been secretly planning an alternate future. I'm keeping this dream locked up in my beautiful diary with a tiny golden key, but not for long. Dave, get out your dancing shoes because you're in for some crazy fun!