AS IS 3
Beyond good or bad,
Beyond happy or sad.
Beyond heaven or hell,
Beyond sick or well.
Beyond right or wrong,
Beyond word or song.
"As Is" is my mantra. I fashioned it onto a refrigerator magnet to remind me how I want to live. When I was diagnosed with ALS in 1998, I was very active. Now I can only move my head. I use this movement to type this essay using a head mouse. Over the twelve years that I have been dealing with my ALS, this is one of the many adjustments I have made.
An influential book in my life is The Power Of Now, by E. Tolle. It convinced me that living in the moment is the only way for me to live. Acceptance is part of what is. It sounds like a cliché but truth is hidden in many a cliché.
I have been very lucky. My husband of fifty years is a wonderful caregiver.Yet, I know that my ALS adventure will have surprises in the future. Even though I have had a mostly peaceful life so far, I don't know how I will be next week. I could be ready to scream about my fate. It is important for me to feel free by not boxing myself into trying to be a "good" PALS. There is a need to leave space for protecting my ego in case I have a down day or a down period. I do this by reminding myself that the first part of childbirth labor was not too hard. What may yet come, in the way of negative feelings and frustrations, is also a part of "As Is."
So when I have an itch that I can't scratch, I repeat my mantra, "As Is." It reminds me to say "yes" to today and a hopeful "yes" to tomorrow.
Kathryn Voit and her husband Gerry, at right, are surrounded by their 10 grandchildren on the occasion of their 50th wedding anniversary, June 2010. Kathryn, who lived outside of Philadelphia, had ALS since 1998. She continued as a math teacher for three years after her diagnosis. She continued to be active in the ALS chapter of Philadelphia, raising awareness of ALS and supporting new patients.