My journey with ALS continues. I experience the days becoming longer as my discomforts intensify. A rash on my arms and chest that I am unable to scratch has been an unanticipated and unwelcome change. The combination of the rash and discomfort of sitting in the wheelchair results in my looking forward to the escape from these discomforts as I sleep each night. Fortunately, nights are fairly restful.
The daytime discomforts are best alleviated by engaging in dialogue with the continual flow of visitors. Some read to me, others do bodywork, sometime we just talk. I look forward to these regular visits, sometimes weekly, every two weeks or monthly. I enjoy participating in a monthly dialogue group and more recently a study group focused on Thomas Berry’s writings and a friend’s elder initiation.
My vital functions, like breathing, have not greatly changed over the past five months. So when I am asked, “How am I doing?”, my reply is “I am still singing.” My legs are totally immobile and my arms are somewhat functional. I can barely move my left arm but still have some use of my right arm and hand. I can operate the wheelchair by myself using my right hand. I am no longer able to feed myself and require help at every meal.
I am so grateful for the love and care I receive daily. The number of people that are needed to care for me continues to expand but someone is always available. This includes three of the community children who like to participate in my care, especially in the evenings when we share ice cream. I have discovered that others are grateful for the opportunity of caring for me assuring me that I am not a burden even though I often feel that way.
The limited time I have been given to live has allowed me to prioritize the use of time with a sense of urgency and finality. One priority has been documenting the journey of the Songaia community I helped bring into being and that now supports me. I am pleased that the narrative I have been writing is done so that I can focus on integrating the various stories other community members have provided. Compiling this community autobiography has been a pure delight.