The clinic appointment just happened to coincide with many family gatherings on account of out of town visitors. The ALS clinic testing, a day prior, had shown a precipitous drop in my functional ALS scores, by far the fastest rate yet and concerning to the doctors. My breathing scores now qualify me for insurance covered hospice care. The once every three month clinic visit took on a new vibe. The respiratory professionals did the necessary push for me to decide whether or not I would want to, when the time comes, go on a lifesaving tracheotomy and mechanical ventilation. They lean against it. Only a few percent of patients choose that option and a significant portion of those who do, end up regretting it. This decline in the test scores was of no surprise as my ability to hold a book, not need the constant attention of my wife or breath without feeling like I’m gasping for air is quickly going past. This has put a strain on my coping skills and sent me and my wife into a new spot of worry.
How does one bring up what they are sitting with? Apparently I’m not very good at it. I am practiced at making the best of the immediate situation. Sometimes that can be a bad thing. The immediacy and short time-frame that is on my mind suck much of the importance out of the ordinary party activities in front of me at this moment. I want to connect but am distracted. I only take glancing swipes at trying to convey my urgency and try to find some higher level of connection. I attempt to be positive and fit in. Heck, I myself am a little foggy on what this new level of connection is supposed to look like. I’ve always expected it’s there.
When I mentioned the recent new reality in my life, a well meaning person tries to comfort me with “oh, I knew someone who was on and off hospice for years”. We talk politics and go on as before. There is no transgression in this, it’s just not helpful.
I feel like my awkwardly glancing attempts at communicating my urgency are taken as attention seeking behavior. I look good, not like a sick person. At the end, I finally force someone to listen to me get my thoughts and troubles off my chest. What a way to sour a conversation. What is it that I’m expecting them to do about it anyway? I feel like me venting my fears has the effect of pushing people away, which is not what was desired.
What is truly important? I hate standard throw away sayings. That’s actually a hard question. Of course we all have good answers to this question but it’s amazing how much time I have spent thinking about other things. It’s a tricky situation for the people around me as well.
Inevitably, connections get changed in some way or other by terminal illnesses. It just feels a little odd sometimes.
As I finish this, a few more days have past and mental adjustment is running to catch up.
Your story sounds familiar. I am grateful for those few special people who were willing to sit quietly and patiently by Kenton, talking, listening, and just being close. Giving him their full attention. Some have a talent for that. Little kids were fascinated with his Boogie Board and iPad and were always eager to hang with him. He loved little kids. One of the most touching things several months after Kenton passed was when our little great niece, barely 2 years old, came in the house and asked, “Where’s Kenton?” He truly made a difference to her. 💙
I’m late in commenting here, David, but I want you to know I am willing and available any time you want to talk, about any subject, no matter how difficult. People tell me I’m a good listener. I know I try to be.