||[Jan. 14th, 2008|01:18 pm]
Marsha Delaney Metcalfe died last month, after living with multiple sclerosis for almost thirty-five of her sixty-six years. We had been partners for twenty-three years.
This is a poem Marsha wrote in 1974, shortly after she'd been diagnosed:
Telling Death his Business Marsha was the most pigheaded, tactless, warm, courageous, open-hearted, alive human being I have ever known.
by Marsha Delaney Metcalfe
Death: your business is to swoop people away at the right moment
one time to wrap us up in your cloak,
carry us off.
You have no business nibbling there at my left knee. You know I am busy
doing the dishes, and have a poem to write.
You are arrogant. You are toying with my body, and you have no right.
You have no business laughing and mocking and tugging at carefully
chosen parts, mulling me over,
a me created for your delectation.
Or perhaps you think I'm a platter of munchy crunchy fried chicken.
Would you like a breast, a thigh?
Oh! That I could will you to let me be, to take a thousand innocent
or a million loved and needed parents, all just and kind heads of state,
I might, I might not, I have not such a choice.
Fingers clutch at my wrist gently, lightly, not lovingly, reminding me I
go home with you.
At the end of her life she had the use of her left arm, her left thumb, and some control of her left fingers. And she lived. She lived her life.
She would write me notes on her computer, using a camera that sensed the position of a reflective dot we glued to her glasses. Sometimes she sent them to me via email, but more often in the last years I'd just read them when I came in. The notes were about nurses she liked or didn't, politics (she would have been so happy about Obama winning the Iowa caucuses, and given the sexist media commentary, just as happy about Clinton in New Hampshire), about her love for me or her anger, about books and music and DVDs she wanted. On top of all other indignities, her short-term memory was shot all to hell, and without the notes she'd forget.
The last books came after her death: The Spirituals and the Blues by the Black theologian James Cone, and The Rest is Noise, a book about twentieth century music by Alex Ross, the New Yorker's classical music critic. She'd seen James Cone on CSPAN's book channel, I think. I'm not sure where she tracked down the Ross book.
She preferred e-books and reading on her computer screen, but often she'd have to settle for audio books, which is how we ordered The Rest is Noise. The Spirituals and the Blues had neither an electronic nor an audio version, so we ordered a paper book -- Marsha had recently heard someone from the nursing home reading to her roommate, and was determined to get the same service for herself.
And as I write this, here's a notice that we're about to receive a DVD we ordered in October, of Yo-Yo Ma playing cello in six short films that mix Bach, gardens, prison etchings, modern dance, Kabuki, and ice dancing.
I wish Marsha could have read those books, seen that DVD, but she always had irons on the fire. There would always have been something undone.
In the twenty-three years we were together, I only once saw her do anything like giving up for more than an hour or a day: The first year she was in the nursing home was very hard. A few years before that she'd tried to get me to promise to kill her if she ever wound up in a nursing home. It was the worst thing she could imagine, and then it happened. To be that dependent was anathema to her; any dependence was anathema to her. When she was using a three-wheeled electric scooter to get around, people would often try to hold doors open for her and so forth. Occasionally one of them would actually manage to be helpful, but mostly she found them either distracting or dangerous. The helpful ones got her thanks; the distracting ones got a penny as a tip; and the dangerous ones got the rough edge of her tongue.
Marsha had a wit that wasn't always gentle. She met her friend Erma in a low-income housing apartment tower. When they met, Erma noticed the ankh Marsha wore and said "Honey, Satan won't give you what you need." Marsha came back with "Oh, I don't worship either of the Christian gods". I'm not sure how that led to a friendship, but they did become friends, the evangelical Christian and the Pagan. But Marsha made friends --and enemies-- where she would, with no particular pattern that I could see, except that she valued smart people above all others. And she made friends remarkably quickly. I got used to coming home and being told about a nurse, say, who was a recovering drug addict and whose boyfriend was bipolar -- not the usual kind of thing for a nurse to confide to her client. But Marsha was so open about her own life that she often called forth a corresponding openness in others.
When she lost the ability to transfer from bed to wheelchair, we had home health aides for a while, to help her out while I was at work. She burned through them at a great rate -- they wanted to, you know, help, and Marsha would rather spend half an hour doing something for herself than five minutes with somebody else doing it. Finally she found an aide, Sharon, who clicked with her, and was willing to spend time reading or watching TV rather than hovering. Sharon lasted through two different agencies, up until the time that the final one threw up its hands and she had to go into the nursing home.
Even after she lost the ability to transfer from bed to wheelchair, she insisted on using her bedside commode. We had a hospital-style bed that she could raise and lower. She'd raise it up until it was higher than the commode, then do what was in essence a controlled fall into the commode. When she was done she'd lower the bed and fall back into it.
The last two years in the nursing home before she died were actually relatively good; the two before that were really bad. Here's something I wrote in the Fall of 2004:
Saturday I was helping Dannie pack to move out from Lisa's house; I also needed to take some food by Marsha in the nursing home. The plan was to drop me off and pick me up again later; but when we drove up, Jazlie (who's four) said "Are we going to visit Marsha?" (Dannie and Jazlie sometimes pick me up at the nursing home when I'm going to babysit.) Dannie said "Do you want to visit Marsha?" and Jazlie said yes, so I took her up while Dannie parked the car.
Marsha was sound asleep. I woke her up because she doesn't get to see Jazlie very often. Probably a mistake, in retrospect; but Jazlie manages to be one of the happiest people I know even as her mothers are separating, and I wanted Marsha to have some of that.
Marsha sometimes wakes up a little confused, but this time it was more than a little. While we struggle with bureaucratic red tape to get the dose in her infusion pump raised, she's been taking oral painkillers (which have a much stronger cognitive effect); that was probably part of it.
She did take in Jazlie's radiance. She said "Oh! I'm home!" and then disappointedly, "No, I'm not."
She recognized Jazlie (and me), and Dannie and her nurse Sherry; but after they left she kept saying "I'm having trouble remembering where I am." I would tell her "You're in the Manor Care nursing home"; she'd say very firmly "No, I'm not." And a few minutes later she'd say "I'm having trouble remembering where I am," and we'd go through the cycle again.
Eventually I remembered that she often called it "Manor Hall" (The name is officially Manor Care Stratford Hall, Stratford Hall being the original name before it was bought out by the Manor Care chain.) She didn't respond, but did drift off into a fitful sleep.
Her hair is still mostly brown, but there is a strong gray strand growing from her right temple, and as I smoothed her hair over her head it ran back in every direction, silver threads over the brown.
Some time later she woke up and said "lost."
"Lost the word."
I waited and she said "Nursing home." And a little while later, "I don't like it."
I said "I don't like it either."
She likes grapefruit juice, and after giving her a pain pill (which I think she asked for) I held the glass of grapefruit juice near her mouth so she could sip through the straw. She took a sip, then another. I kept the straw in her mouth, hoping she'd take another sip --I worry about dehydration when she's like this-- but she shook her head. I asked if she wanted ginger ale instead, or water. She said something that sounded like "was". I said "Water? You want water?"
She struggled for a minute and said "I want to be who I was. I want what was."
All of my carefully maintained cheer dissolved and I started to cry. "I do too, honey, I do too. And we can't have it."
And that was really the only gift I could give her, those tears and a hug. I think she saw me then; she smiled and her eyes focused. She said "I didn't forget how you cry."
About a year later, right before Samhain, I prayed to the Angel of Death (in the form of the strikingly homoerotic memorial to the Pennsylvania Railroad's war dead in Philadelphia's 30th Street Station) that Marsha would live as long as she wanted, that she would have an easy death, that I would be there to priestess her death. Samhain day she was in intensive care, and I was thinking that maybe the Angel of Death wasn't quite the right deity to pray to! But she recovered, and in fact that was the start of the two good years before her death.
Sometime in the month before her death she told me that she would go on adventures for half an hour or an hour, and then wake up and find herself in the nursing home, and wish she were dead. On a later visit she said something like "This is a perfectly acceptable life. It's not very exciting, but..."
On our last visit I was running late, on my way to a workshop in Massachusetts. Walking up to Marsha's I looked at my watch and said "Oh, I have plenty of time -- it's only 15 of 6. So Marsha and I had a nice, unhurried visit. Somewhere in there she said, "It's not that I don't miss having sex with you, 'cause I do -- but what I really miss is going to workshops." We told each other how much we loved each other, and said goodbye. (In the parking lot I realized that I really was late, after all -- what a gift that mistake was!)
It was in Massachusetts that I got the news that she'd been diverted from a regular hospital to MCV -- the EMTs thought she'd had a stroke, but it turned out to be seizures. She never regained consciousness.
Marsha had a dream, the first year or so we were together, that her three-wheeled scooter had helicopter blades and she could fly. In the days before her death, I got a distinct impression of someone waiting for her with a three-wheeled-scooter helicopter, tapping his foot as if to say "Meter's running, bud!" But we humans go at our own speed, no matter how impatient divinity may get.
The day before she died the Jehovah's Witnesses left a pamphlet on my door: "All Suffering SOON TO END", it said. How like Marsha to dragoon the Jehovah's Witnesses into service as omen delivery boys!
When we took the respirator out, Marsha's heart rate went up to 140 for a while, then gradually down to 30, then zero. Then back up to 30 -- she was always a fighter -- and finally back to zero again. After the doctor had come, pronounced her dead, and gone, I put my hand on her forehead to remind her that she was dead, that she could go now. But she was way ahead of me. I hadn't gotten two sentences out of my mouth before I saw her flying off to the northwest on her helicopter. She turned around and waved goodbye with the most enormous grin.
I will miss her more than I can say.
P.S. I see I've left out her years in the New York City lesbian bar scene, her years as a radical in the East Bay, her years with the Richmond Lesbian-Feminists. She lived a large life, too large for any one person to encompass.