Day 22. The Hokey-Pokey
It’s been 3 weeks now since the Donald got voted in and I continue to be angry, disappointed and afraid. A friend said I need to lighten up, which does not sit well with me. He’s someone I used to work with back in the early days of the AIDS epidemic when so many young people were dying. It comforts him to collect the obituaries of people who have lived a long time. He told me he recently come across the obit of the creator of the Hokey Pokey, a man who lived to the wonderful age of 93. His family and friends were grateful for his long full life and only struggled when, on the day of his funeral, someone tried getting him into the coffin. They tried to put his left leg in, and then all the trouble started.
Day 23. World AIDS Day
There are things I can’t do without causing myself pain, like when I’ve strained my back and bend to tie my shoe. One of them is looking at Trump’s face or hearing his voice; the television is still off 23 days later.
One of them is not understanding how people that I care about could vote for him; I know you’re reading this right now.
The third is not knowing what to do about it all except to keep writing into it. I wish I’d kept a journal during the onset of the AIDS epidemic, so I could remember how it all unfolded, day by day, and how I finally found my way to action.
What was the first moment that gave me a sense of direction? I think it was those Polaroid selfies that Bobby Campbell taped to the pharmacy window, his dark purple lesions telling me to be careful. Someday, when Trump and all his hateful awfulness are just a distant memory, I’m going to work on getting a plaque installed on the spot where so many of us were ignited.
Day 25. The shattered belief system
When I became a Shanti volunteer (an emotional support ‘buddy’ to a person with AIDS) in 1983, I had to successfully complete 6 days of training before I could be assigned to someone. Over the course of the training potential volunteers did everything from lay on the floor and visualize our deaths to listen to a panel of people with KS lesions talk about what it was like to walk through the world covered with purple spots.
There were numerous practice counseling sessions, where we took turns being the counselor and then the person with AIDS. These role-plays became increasingly more difficult as the training went on and culminated in the final two “graduate” level sessions.
The first was having to say goodbye to your client and the other, in many ways the more difficult, was working with what was called the “client with the shattered belief system.” These were people for whom AIDS (most of us) shattered their sense of the world and how it works. “How could this have happened? What am I going to do? What’s going to happen to me and all the people that I love?”
The goal of this role-play was to assess whether the volunteer could avoid trying to “fix” the client, minimize their feelings, or say, “I know how you’re feeling” (because we didn’t). I remember how helpful it could be to sit with someone’s great concerns about how the world suddenly didn’t make sense anymore and I’m hoping we can all do that for one another now.
Day 27. Monday Monday
Oh, Monday morning, you gave me no warning
Of what was to be --
Oh, Monday, Monday
How could you leave and not take me?
28. Forty-seven times
A month ago today I went to the supermarket, bought the makings for a celebration meal, cooked it, set the table and then, as the night unfolded, couldn’t eat it.
Since then I’ve contributed to groups fighting the good fight, signed petitions, gone to fundraisers, made phone calls, did my work, the laundry and the dishes. I stared at the super moon, changed my clothes, the sheets, the litter and my mind (about a number of things). I took many power naps and photographs and the garbage out. I’ve told a number of people I loved them, listened to their stories, recounted mine. I removed the lint from the dryer vent (love to do that.) I saw my physical therapists, got an MRI, made soup and stew and spaghetti sauce and gluten-free dressing and a lot of lunch for Kirk. I’ve written every day, gone to the beach and the movies and cried in the dark with strangers. I lit candles for the dead.
There’s so much more I could’ve done and will do, and with some of you, but mostly I need to do this month again and again, 47 times exactly, until we vote him out of office on 11/3/20.
Day 29. Welcome to California
Forty years ago today I crossed the California state line with my sister and our friend, all the way from New York, in a car that was no bigger than your couch. I didn’t know that Harvey Milk and Dan White were coming, that AIDS and Rodney King and Yahoo and Google and global warming and cell phones and 9/11 and my husband and Obama and gay marriage were all coming. I didn’t know that Hillary and Bernie and Trump were coming and I certainly didn’t know that, most wonderfully, you were coming too.