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I had a great day yesterday purging my house of mounds of wires and vintage video production equipment. I also returned an assistive device I bought to help Scott hold utensils in the hand that no longer works.

Last night, we watched Ted Lasso. I really needed Ted’s sunny side up approach to life and I secretly wished he would send me some biscuits and barbecue. I want him to be my imaginary coach as I get ready to face the myriad meetings we will have in the next week. There is a face-to-face with Scott’s doctor, blood tests to determine whether he has the mutant gene that would qualify him for clinical trials, and a whole half day of meet and greets at the ALS Clinic.

Since he arrived home, we’ve been in a state of suspended animation, the kind of half life people lead when they are between Earth and heaven, a purgatory of sorts where we are slopping around with little official information or knowledge. I recognize this state. I felt it after I was diagnosed with Stage Two colorectal cancer a couple of years ago; it was before my surgery and after being given the bad news by Dr. Boushey that he was going to cut out half my colon.

It can be a good time, and it can be a bad time, depending on the day. As I said, my day was good but the overnight was terrible. And putting on John Denver made it worse.

I listened to him in a completely different way, this wonderful inspirational singer whom I had loved since childhood. I swooned to the loving songs for Annie (whom he divorced), his rocky mountain high (what product did he use?) and his joyful ode to Jacques Cousteau. Man that felt good until it didn’t. I suddenly realized so many of his songs were about packing his bags and leaving his loved one promising he would be back some day, or that they would meet again. His final act was indeed leaving on a plane, though it was not a jet but I’m guessing a prop. John never did come home again.

Suddenly, listening to John Denver went from joyful to ominous, and I felt the night terrors I’ve often experienced in times of crisis. It’s like a form of sleep apnea where I wake up just trying to catch my breath. I had night terrors in spades after my husband left me with the kids. It’s a way of sorting things out, I suppose.

I woke up feeling anxious, so I decided to write this newsletter to rid myself of all the anxiety. Writing helps, folks, it’s why I do it. It is therapy, it helps me made sense of the world. It reminds me there is no point living in the past, or fearing the future.

I am here now.

I need to make the best of the time we have.

Thanks to my wonderful readers, and for all the notes and messages from my dear friends and even friends I’ve yet to meet. And thanks for your support. I’d love it if you would share this newsletter with friends who might be feeling alone giving care to a loved one. It would be great to hear from anyone who would like to share their story.

I’m hoping to start a Friday feature which focuses on the experiences of those who are out there suffering in silence, sad at the prospect of losing that one person who is their home.

Happy Friday!