The most frequent image and feeling I have these days is of being trapped. As my speech weakens more of my thoughts do not escape my mind to be shared as they occur. (Not necessarily a bad outcome.) As eating gets harder I retreat to feeding myself through my button -- and by myself. I am walking more slowly and with more effort. I have much less energy.
But the worst images rushing through my head picture me dealing with trying to communicate as my hands and fingers lose their coordination and power. No more typing. No more drawing. No more sign language. Just grunts, picture boards, head nods, eye blinks and serious desperation.
The problem with ALS is that the future is so well-known, yet at the same time such a mystery.
Of course by the time those terrible things happen, I expect breathing will become a serious issue as well.
But I am not going there now!
Another way to think about being trapped occurred to me this week as I responded to a posting by my new best friend Lindsay. I wrote "We live in a bubble of love sustained by our family and friends".
I am here now at the beach surrounded by my dear family, all of whom seem to be dedicated to taking good care of me. They are completely accepting of who I am, and while making every effort to watch out for me, are very careful not to treat me like some alien creature who is so different to be scary. They tolerate my strange eating habits. Feed my constant need for paper towels. Patiently wait for me to grunt or write my thoughts. Walk slowly so I can keep up.
We have been coming to the beach at Duck, NC every summer for over 30 years. There are so many wonderful memories of this place - especially of seeing first my son and now my grandkids growing up. Of being an important part of their lives - even now. Perhaps especially now!
So if I am trapped it is in a bubble of love - a prisoner held by chains of love and compassion and trust. Like the beach, a great place to be.
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