The clock is ticking, which is both good and bad. While I am still wrestling with the idea of having a piece of silicon dangling from my gut, I am looking forward to spending far fewer hours of my day trying to expel food and phlegm from my airway with the cough assist machine. I am employing the concepts that I write about so often in this blog on a daily basis in order to adjust to this upcoming intrusion to my body. Every day I envision what it will be like having this new appendage, carefully focusing my thoughts on the gratitude for the increased time and comfort it will bring to my life.
Recent weeks have been filled with the details of my exit from hospice. We have been busy replacing equipment to reduce costs, learning more about the tube, and searching for a new afternoon aide. As January 19th draws closer, I wrestle not only with anticipation of the procedure, but also with the loss of my friend and aide, Lloyd, as a daily presence in my life. While I know he will continue to visit now and then, it won’t be the same as having his reliable support every Monday through Friday. For me, this is the most difficult part of the transition. His caring service and his unwavering belief in my ALS recovery have been an important contributing factor to my successes in living with ALS.
The search for Lloyd’s replacement is ongoing, but so far with no results. With less than a week to go, the pressure is on to find someone, and to remain calm in the process. Stay tuned! Meanwhile, if anyone knows any good jokes about feeding tubes, please share them.