We have many good things to talk about: Dave’s magnificent reading at NYU last month, the cruise we took to the eastern Caribbean in the beginning of this one, a knock-out poem Dave wrote recently, and the deepening of already-great relationships as we make this life journey together. I want to talk about all of these things in greater depth, but enough time has passed that I think it best not to try to cover everything in one fell swoop. Besides, significant things are happening right now, so I think I’ll start with the present and, in later entries, work backward.
ALS, like other terminal illnesses, forces you to redefine what you mean when you use words like “good” and “hope.” Dave says he can see losses every week. He no longer hopes to perform his one-man show. His idea of a good day has more to do with breathing well, with the help of his by-pap machine, and reading something stimulating than with treks into the city and hosting dinners for friends and family. What makes him feel most normal has changed, too. A year ago, he enjoyed doing the dishes for the fifteen minutes he could stand, because he felt like he could still contribute something to the running of a household, and that made him feel normal. Now, he feels most normal when he is lying in bed.
Just the Facts:
Weight two years ago: 208
Weight Now: 128
Lung Capacity: 23%
Nine months ago, Dave and I performed at Swarthmore College, playing the piano and singing, reading our work. True, we had to switch voice parts because Dave’s trouble breathing made the upper register too difficult to reach, but we did it and produced (if I may say so) a pretty darn good performance. Today, Dave has lost most of the use of his right hand, which has curled due to muscle loss and constriction.
Keeping in mind how relative good is, here’s a very good thing: Dave decided on Thursday to sign up for hospice. When you have ALS, signing up for hospice doesn’t mean you’re going to die tomorrow or next week or even six months from now. What it does mean, however, is that you’ve decided to let life and death take their normal (another relative term) course. You’ve decided you don’t want heroic intervention from a ventilator, or even CPR. You’re not throwing the door to death wide open and inviting it to come, but you’re not throwing all your weight and your furniture, along with some sandbags, against the door to stave off death’s inevitable barging in, either. What hospice means is that you will have regular visits from a nurse and home health aids who know how to build a relationship with you and make the rest of your life as comfortable and fulfilling as possible.
This weekend, Dave and Emily will move on to the next big decision. They need to get out of their house as quickly as possible. They need a place with everything on one floor and with access from their home to the outside world, something they can’t get at their current house. They plan to pack the bare essentials—almost like going on a cruise—just enough for living in a temporary location while Emily and her team finish downsizing and packing, selling the house, buying a new, accessible one, and moving. Dave needs to be spared all of that. He needs just to focus on spending the rest of his life enjoying the people he loves and the things he most wants to do. They have two places in mind, so stay tuned for further developments.
In relating all these things, I’m not out to make you feel bad or to slow down your enthusiasm for the day. Of course, you probably will feel bad, especially if you have a meaningful connection with Dave. There’s just no way around it. What I’m finding, however, is that I’m noticing more and more the “little” things I have been taking for granted—little things like being able to walk and to button my shirt. I’m noticing even more of the sweetness in even the smallest of interactions with other human beings.
Dave loves Louis Prima’s rendition of “When You’re Smiling.” (I think I may have attached a link to it from an earlier blog post, and I’ll never forget Bill McCann playing it on his trumpet as we sang along at Dave’s book launch party.) A few months ago, I rediscovered, on a CD mix made by a good friend, Randy Newman’s The Time of Your Life. I don’t use it to keep me from crying or raging about what’s happening, but it does help me keep a beat on how to continue living my own life. I’ll attach a link to it in case it might do the same for you.
With Wishes for Love and Peace,