I woke up this morning to news from my friend Nancy that her mom Evelyn, who is in hospice, is having trouble dying. Evelyn is ready. She is a woman of faith and looks forward to seeing long-lost family and friends. She has suffered a great deal in the time I’ve known her. She has had a long, long road to this place, and her death is inevitable, but it is arriving slowly and exhaustingly.
So I find myself in the strange brain space of wishing death on someone whom I love, even as I join humanity in a vast, world-wide effort to save millions of lives.
Life is strange and cruel and beautiful, if living and dying are both good things.
Jesse and I visited Evelyn to say goodbye, two or three weeks ago. I asked Jesse to write her a note. This led to some strong emotions and a lot of cursing at me.
Jesse has been struggling for a long, long time now. Most of the time, she’s trapped in a cage built by OCD and Tourette/coprolalia and depression and anxiety and anorexia and profound loneliness. She’s barely functional. From within this miserable cage, she presents me with a mask of sarcasm, bitter rage, and volatility. But somewhere locked away, my sweet baby girl — a child of empathy and social justice and selflessness – still IS. Sometimes I ask her to open the cage door and step out, to come back to us. I’m not even sure what I mean when I say it.
After Jesse calmed down over my ask for Evelyn, she sat on the floor with a piece of paper and wrote this, for hand delivery on our visit:
I hope you’re comfortable and surrounded by love. Every time I enter this house I feel a warm presence from you. It always makes me smile inside, it always makes everyone smile inside. And this presence is engraved in my mind and in many others. And I know I for one will never forget that presence, which is you. I’ll miss you.
With love, from Jesse
Jesse brought me the note and asked me quietly, “Is this okay for me to give to her?” I bit back tears, pushed out of my eyes by my full heart. She was actually saying goodbye, directly, bluntly — a facet of her usually disruptive disinhibition, displayed in its full glory.
The truth is, what we call her disorders are also part of what makes her the connected and fundamentally decent human being she is. She is one whole thing, all mixed up together in a cruel and strange and beautiful jumble. It’s a good thing, depending on the day.
A couple weeks ago I was supposed to fly out to California by myself to visit my mom. She’s 87 years old and pretty healthy for that age, but I know there’s only so much time left before she’s gone. As the COVID-19 news broke and broke, I agonized over whether to go. On the one hand, I desperately need extended respite from the daily grind of meeting Jesse’s intense needs; and I miss my mom and just want to see her. On the other hand… I could carry coronavirus to mom and kill her; I could end up being stuck in quarantine in California for a month and then Anthony would be completely overwhelmed here.
Eventually Anthony laid it out clearly for me. The risk of me taking the disease to mom was small; but the risk of a terrible outcome if I did so was very high, given her age. So, nontrivial risk. I cancelled my trip in a tumble of mixed feelings.
The next day, mom asked to go to the hospital, because she wasn’t feeling right. She ended up hospitalized for more than a week, with fluid in a lung and around her heart. They did some draining procedures and my brothers did all the things that family does until the hospital closed it doors to all visitors. So my mom spent the last few days of her hospital stay alone, unvisited, unobserved by anyone but hospital staff.
And here I sit, in the strange brain space of feeling grateful that I chose not to be with my mom when she really could have used my help and support. My decision not to fly to California was a good thing.
Nick’s therapist reminded me recently that, if we look around with eyes open, there’s much to see that’s good. It’s not all bad news. We don’t even have to look for silver linings. Even as we hide in place, research is racing forward to find a vaccine and life-saving treatments for COVID-19. All around the world, humans are making choices that are uncomfortable and inconvenient personally, to help save strangers’ lives. Medical professionals continue to show up to work, potentially putting their own lives at risk in the service of other lives. Here in my local community, folks are helping each other in little and big ways, stepping past fear and anxiety.
Yes, people suck and are doing stupid, selfish, greedy things. But also, there are good things. I will try to keep looking for those too.