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Living with ALS: The Women's Voice

Essay by Mary McConaghy
Fall 2010

Since I was diagnosed with ALS last winter, "As Is" become a complicated and shifting concept. I will not let the diagnosis of ALS prevent me from living; on the contrary, because of the diagnosis, each day I want to recognize life as it is for me and to make the most of what I have. I want to fully live each moment, contributing as much as possible and savoring each moment.

Each day is different. Part of the "As Is" involves loss. I have twinges of sadness knowing that my speech will never be clear again and that my days of eating lettuce, crispy apples and tortilla chips are over.

I know there are more losses to come, but "As Is" also holds the possibilities to compensate for these losses. For example, my new means of communication include learning to use an ITouch to speak for me and investigating how to Skype to my son away at college. And I certainly can't complain about having to add more frappucinos and fruit smoothies to my diet to compensate for what I can no longer eat!

For me at this early stage, "As Is" also means being able to continue much of life as before. I am grateful that I could kayak on vacation, that I can still go to work every day, that the dog and I can enjoy walks together. Even cleaning the house and washing dishes are not so bad because I feel so lucky to be able to do them. I now savor doing these things that I have taken for granted, but will not always be able to do.

I am paying more attention to what is really important to me, and looking for opportunities to make these things happen. Time with friends and family is precious to me now as we intentionally acknowledge and celebrate the gift of friendship. This means more trips to see my son in college and to see my extended family in Wisconsin, a weekend sleepover with six good college friends. And interestingly, new connections with the ALS community have brought a whole new group of good, interesting, vibrant human beings into my life.

Just because my diagnosis of ALS is real does not mean that my days are all gloom and doom. I can acknowledge what no longer is and be aware of what will be lost, at the same time I am grateful and joyful for what still is and for what is still to come. Today "As Is" means I am still here, with so many things to do, new things to learn, and people to love.

Mary lives in Philadelphia with her husband, two sons and their dog Lafayette. She was diagnosed last winter. Her speech is almost gone, but this summer she kayaked and painted her kitchen.                  




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