Welcome to the world of feeding tubes.
My life took a major turn this week with the addition of a PEG – a Percutaneous Endoscopic Gastronomy (Feeding) tube. The accompanying picture will give you an idea of what now hangs from my belly. Other than some muscle soreness and a little pain when I cough as the site heals, the installation was not a big deal – in and out in less than an hour.
I now will be able to take nutrition through the tube when I will need to supplement what I can ingest normally through my mouth. Hoping that my VitaMix is powerful enough to make a puree thin enough to pass through the tube – keep checking back for recipes.
I commented to friends this week that while the tube will take care of some of my nutrition needs, I have substantial need for emotional and spiritual nourishment and am depending on my family and friends to help fill those needs. I recently took a self-rating test to measure my ALS quality of life. After all the usual physical questions, I was asked how dependent I had become for emotional support from others. My honest answer was that I was very actively reaching out to friends and family for support, hugs and love. Surprisingly, that answer was scored as a negative indicator for my quality of life.
But that’s just plain wrong.
Whether they like it or not, my family and friends are on this journey with me. While their concern and love will not make a material impact on the course of my disease, they will make a profound difference in the quality of the time we share together. And I am relearning just how much courage it takes for my family and friends to reach out to me, and admire their willingness to take that risk. I certainly remember times in my life when faced with similar needs from people around me I turned away because it was too hard.
I have recently met or heard about some fellow PALS who are in complete denial of the illness we share. What I saw were folks whose isolation had become a self-reinforcing process of isolation and decline. They said they hoped to spare others around them the pain of this evil disease, but of course they are doing just the opposite – they are making it almost impossible for the circle of family and friends to close ranks and stand together and in strength, and to find that inner courage that makes us all special as compassionate and loving people.
A good friend died a few months ago after a long bout with cancer. I was privileged to spend a good amount of quality time with him in those last few months – talking, reading or just sitting. He told me how much it meant to him, and I know how much it meant to me to be there for him and to build up the store of strength I now need for my own journey. I am a better person because of that experience, more honest and humble in the face of my own challenges. Thank you Willie.