What was I saying last week about suffering being optional? Oh, brother. I stand corrected. Suffering is mandatory. It's the human condition. If it's not an atmospheric firehose, it's a check engine light. If it's not prunes for breakfast because cheese has ripped you a new one, it's dementia welcoming you to hell. Check your expectations at the door, get in, fasten your seatbelt, and keep your head and arms inside the ride at all times, if you can.
Last week was one of the most surreal experiences I can remember. My friend's husband paid for me to stay in a guest room at the memory care facility. In some ways the guest room resembled a posh hotel room: a bathroom bigger than my studio apartment, with a huge shower; a fully functional kitchenette with a two-burner stove, dishes, and a full-size refrigerator for my full-size pizza; a queen size bed in front of a king-size flat screen TV; and a sitting room with a loveseat and a round wooden table with two chairs. The only things I lacked were a hook for my bathrobe and functional WiFi. Did I mention it was on the fourteenth floor? It was on the fourteenth floor. The floor-to-ceiling windows looked out over Westwood Village, and in the far distance, yes, I had a view of the Pacific Ocean, glittering in the sun.
After each visit with my friend, I retreated to this sanctuary to cry, to moan, to berate God for turning my friend into someone I didn't know, and to beg God for mercy, that if this disease should infiltrate my brain that I be given the grace to accept it and the means to locate some fentanyl, stat.
I've been back in Tucson for two days, and I'm still gobsmacked by the horror of what happens when we lose our capacity to think.
There were some macabre moments of levity. She managed to tie her shoelaces to each other. Fortunately I fixed it before she stood up. On her birthday, she put a red plaid flannel shirt on inside out, so the chest pockets hung like flacid bags. It looked great on her rail-thin figure—I predict we'll all be wearing our flannel shirts inside out soon. My teariest chuckles came when her old-fashioned red bat phone rang and she answered the TV remote. The TV came on, and the phone kept ringing.
Another time she tried to answer a flat long paintbox set. In her defense, it did resemble a really big cell phone. The phone kept ringing, so I picked up the telephone receiver and held it out to her. She started mumbling into it. I tried to take the paintbox out of her other hand, but she pulled it away and stood there with a "phone" at each ear, muttering word salad. My brilliant funny friend.
My friend is still in there somewhere—I can see it in the art she makes—but her personality has shattered. She knows something is very wrong, and she's frustrated and scared. She has a minder every morning until her husband comes to do the afternoon-evening shift. She often locks the minder out of her room, paranoid to the point of tears, complaining nobody there likes her. Almost every morning, she packs a bag, determined to escape the prison. In fact, she got out a couple times. The airtag in her purse led to her rescue. She keeps trying. The first day I was there, she'd packed all her shoes into a big yellow bag, along with a couple mismatched socks, two cashmere scarves, and a toothbrush. Whatever it takes.
Maybe it's some weird kind of blessing that the slow-motion car crash my friend is experiencing is taking so long. The pace of the disease gives us time to accept it, to say goodbye slowly, to grieve in smaller doses that aren't as painful or shocking as they would be if she'd died in an actual car crash. If I had cancer, I would want time to say goodbye. The problem is, her body lives on while her brain is dying. She could live on for several more years before her brain forgets how to tell her throat to swallow. Is it better to be aware or unaware that you are disintegrating?
This week I got the news that another friend, an older man I served on a nonprofit board with, has decided to have his doctor remove the medical device that keeps his heart going. He's chosen the day and time. Day after tomorrow, 10:00 a.m. ET. He's said his goodbyes. A few hours after they unplug him, he will die. He's running to meet death. How badass is that? The medical system is geared to help us survive at all costs. We compassionately euthanize our pets but we pull out all the stops to keep the hopelessly ill people alive a few months longer, even if they aren't considered "terminally" ill. It's so uncivilized to usher our decrepits off the mortal coil "before their time."
It's all just random, a slurry of genes, lifestyle, income, and social connections that determine our lifespan. Unless we opt out. Ha. Take that, fate, God, or whatever the hell you are.
As the week went on, stopped trying to understand. I learned to respond to my demented friend with compassion and encouragement, even though I had no idea most of the time what she was saying. I looked for the nuggets of joy. She lit up at the sight of her birthday cake, and for a few moments, I caught a glimpse of the person I used to know.
I was grateful she knew me. I hated to leave, and yet I could not leave fast enough. On the morning I checked out, I kissed her cheek, told her I could not take her with me (she had packed all her socks), and got someone to let me out the lockdown door into the elevator lobby. I took my broken, raging heart down to the parking structure, got into my musty car, and drove out of that tomb into the California sunshine. Will I see my friend again? Maybe in another year she won't know me.
That's a problem for another day.
Today, I live.
