From “Will: A Journal of an Illness”
These excerpts are from the afterword of my memoir, Will: A Journal of an Illness, about caring for my partner Richard Fameree as he suffered and died from ALS. He was a writer and musician. Our daughter, Adele, was almost four when he passed away.
Every day I think I can’t do this, I don’t have the strength to do this, but it has been this way for months, maybe years, and somehow I just find the strength. Today, four days after Richard died, the funeral home was scheduled to drop off his ashes. I was home alone, sitting on the couch, thinking, I’m going to go to the door and some stranger is going to hand me a box containing the “remains” of the person I love most in the world? That can’t happen. And it happened.
But the girl who dropped it off was so kind. She asked me about the upcoming service and we talked, and it turns out that she is a musician. I gave her one of Richard’s CDs, and it was just like he was there with me, talking through me, encouraging her to do her art, live her truth. And the whole time I was holding a black box with his name on it, something of his body inside.
How many months were we together? How many years? I am looking for a form. The timeless contracted in time? That was our form. It is often called poetry. And it is a difficult form to sustain.
We had eternity, which is eternity, and also just exactly as long as it needs to be.
It is 2 weeks later now—May 19—and each day feels like an uphill climb. I am breathless just trying to live through them. The atmosphere is thinner without him here. And we are so heavy.
I just started reading Deepak Chopra’s book The Afterlife: The Burden of Proof. Chopra uses fable of Savitri as the book’s frame, and then compiles evidence—scientific, experiential, anecdotal—for the afterlife. I don’t need evidence. I feel sure that Richard has gone on. I just don’t know where, and I don’t know how and if we will ever communicate.
“Today was once tomorrow,” he is singing now. I have his computer open to i-tunes and his albums, to one of the first songs he wrote for me:
And I try to understand,
that this hand once held your hand.
And I miss you more than light.
Like a child in the night.
And I try to understand.
That this hand once held your hand.
Tonight in the bath, Adele said, “Go under water and hold your breath and it washes your face and it gives love to Daddy. “
I think she meant there was something prayerful, some risk and trust involved in being underwater, in holding her breath.
She and I are lost without Richard. The triangle has been broken, there is a tear in the cosmos. I feel like I am holding my breath all the time now, trying to survive in an alien element.
I am getting many letters and emails from the people who loved him. He inspired so many writers and artists, more than we will ever know, I realize. The poet Allison Hedge Coke wrote me an email today:
A Great One has been among us, and we were fortunate.
You were luckiest because you were closest to him.
Luckiest and unluckiest, I think. But he was a Great One. And it is his luminosity that is most difficult to capture. Not to remember. But to describe. I will never be able to describe it.
“I must return to him as he was,
a shimmering planet sheathed in its own air.” --Thom Gunn, “The Release”
Adele keeps saying, “I am thinking of my daddy. I’d better put a rock by his tree.”
We planted a birch tree in his honor, and we water it constantly and surround with stones from the places he loved, stones representing our journeys, our long relationship to time. These stones were here before us and will be here long after.
After we planted the birch tree, we learned that the birch is the tree most associated with poetry, writing and travel—his passions. The birch is considered the forerunner, the first to forest a new place. It takes root, and then the other trees follow.
I told a friend about this journal. “Write it,” she said. “Write it while you still remember what it felt like to be a family.” Even the most well-meaning comments skewer me.
I ran into a neighbor today, a beautiful young mother with a new baby girl. I have seen her before, walking with her husband and their daughter in the stroller. I was driving around the block and when they reached the crosswalk he put his arm out instinctively, protectively—to make sure I would stop.
I was that young, cherished mother once, not long ago. But I will not be her again. The one who saw me as her will not be again.
“I don’t know if you’ve heard,” she began, almost breathlessly. “But there have been a couple of robberies in the neighborhood. Someone walked right into Carol’s garage last Saturday and stole her bike! So be on the lookout for suspicious characters. And make sure you are locking your garage.”
“Ok, thank you for telling me,” I said.
“No problem. It just makes me so scared to think that this is going on here,” she said, her voice cracking.
I don’t know what I said then, but it wasn’t what I was thinking, which was, this doesn’t really scare me. When you lose your soulmate and the father of your child to a long cruel illness you really don’t worry anymore about losing your bike.
I am at the heart of a paradox. Richard and I completed our contract with one another. Our love came to fruition. We loved one another fully, wholly. He helped me to bring Adele into this world, and I helped to lead him out, and there it was. Our love was lived at the poles of life. But because we reached completion, I don’t know what to do now.
“He was so worried about you,” his nurse’s aide Geri told me this week. She had stopped by to see how we are doing. “He used to cry about it whenever you weren’t home, ‘It will be the worst for Rachel,’ he’d say. ‘How will she survive it? I wouldn’t survive it,’ he would just cry and cry like that.
He was right. How will I survive it?
How will I live a life now. . .years and years of peripheral experiences, peripheral people. When I saw photos of him from before we met, his eyes looked so sad, so alone. Will I look so alone now?
I can imagine that he is “here with us,” but that is all it is—a facet of the imagination.
And a platitude. “He is with you,” people say and it hurts me. What do they know? What do any of us know? It is another comfort measure leveraged too casually, it seems to me.
Those moments of presence—magical little twinkles of synchronicity, suddenly surfacing memories—are one thing when you loved someone but did not see them every day, live and breathe his life with him. They are breadcrumbs on the path, suggestions of the spiritual. But they are no real meal when you are starving.
His absence is much greater than his presence. And—even after all that dying, all of our emotional preparation for this—his absence is terrible.
Adele likes to pick up our books and pretend to read aloud to herself, making up words. Right now she is on the bed with Richard’s copy of “Lives of the Saints.” She says,
And I was the mystery and I came and I was not you.
Now she is making up a song:
I was a girl you didn’t know
all the way!
all the way!
I was a girl you didn’t know
all the way!
I was the mystery and I came and I was not you. Is that love then? To encounter the mystery, to really meet the other who is not you?
Last night I was tired, just going through the motions of cleaning the kitchen and I thought about him watching me. I don’t know if I felt his presence and felt him watching me (as I feel right now) or if I imagined him doing it. And are those two things any different? Isn’t the imagination the most evolved part of the human being—the function that perceives what it cannot yet see, that makes creation possible?
What would I give to watch him do the dishes again? I would pay thousands of dollars for the chance to watch him do the dishes. And the chance to spend a totally ordinary evening with him? I can’t even say.
But just realizing this, how much I would love to watch him move around through the routines of our days, scrub the pans and wipe down the counter like I am doing now makes me think that he must be watching us if he can, if such a thing is possible where he is, as what he is.
And we must seem so small to him, so tender and miraculous in our bodies.
A friend called to see if I would go with her to see the poet W.S. Merwin read. I don’t think she realized the symmetry--the fact that she had brought Richard to that first reading by Merwin, the one where we met. I said yes, but then Adele had a panic attack about being away from me, so I brought her along. She had a cold, and we were running late, and so the only place for them to put us was up in the box, enclosed in the sound booth. We sat screened by glass, above the reading, and it reminded me of that early dream I had had of watching our lives. I felt Richard was telling me something—see the great poet down there? And can you imagine how it is for me now, up above and looking down like this?
I think he flew up out of here into a higher knowing. Away from his body—its pain.
And sometimes I climb up and up toward him and look back down and everything here looks miniature, like fragile dollhouse furniture. Tiny cups and tiny plates. Little figures with painted faces situated on bright patches of grass.
“I had only seen little suffocating strips green on meridians and beside sidewalks,” he said once. “When I finally went West and saw that expanse of grass, I just took off my shoes and ran!”
I talk to him before I sleep, or when I meditate.
It is so vast and free, he says, like you just keep firing off and expanding in thought after thought. (You don’t yet realize how much of our thinking is the body, snagging us back to one of the body’s needs.) It’s not quite an endless orgasm, not that pitch of pleasure, quite, but that kind of endless ringing out. . .
Something like being outside in the most beautiful landscape—with the brightest green fields and delicate wildflowers and a sky, the most glorious changing sky, and a feeling of being the wideness of the sky.
And this world I’m still in? I ask.
To come back feels like your energy collapsing as you enter a small house where the lights are dim and everyone is watching the television.
It is not even a good program but everyone is watching the TV thinking that is life.
“This is an essential experience of any mystical realization. You die to your flesh and are born into your spirit. You identify yourself with the consciousness and life of which your body is but the vehicle. You die to the vehicle and become identified in your consciousness with that of which the vehicle is the carrier. That is the God.”
Two more weeks of teaching until summer break. I was walking in to work in the rain and ran into a colleague, who offered to share his umbrella. “Aren’t you excited to be in Paris in a couple of weeks?” I asked. “Just to watch the people, and absorb it all. It will be wonderful!”
“It will! he said. “You know, I don’t know why I didn’t think of this earlier. But why don’t you and Adele come with us?”
“No really! You’d have to shell out for a plane ticket, and they aren’t cheap. But then you could stay in the flat with us. We’d love it.”
It was so generous if him, and so something Richard would have done—impulsively invite another woman out of genuine kindness— on our special vacation. His wife was one of my best friends, and I knew exactly how she might feel.
“Ask Eula,” I answered. “Talk it over. I don’t want to interrupt your vacation.”
But when I got into the office that I share with Eula, she was excited. “Will you come?” she asked. “I think John was inspired!”
Today, the day after the Paris invitation, I was offered an editing job that I can complete in the next two weeks. They will pay me almost exactly the amount of the plane tickets. There is a difference of $3.
We got to Paris and were suddenly seeing all the sights that we thought we’d see together. I knew all the places Richard had loved, I felt drawn to them, and could sense him there at all his ages.
I haven’t told Adele about his cremation yet, and so I kind of furtively, privately scattered ashes in some of his favorite spots while Eula entertained her. I tossed a handful of dust into the Sienne, on the Ponts Des Art as we walked toward the Louvre. It was at that spot on the bridge where people draw their initials on padlocks and lock their hearts together for all time. I was looking out at the water, at all the exquisite shades of blues and grays along the banks, and Adele stopped and said, “Let’s just sit on this bench awhile.”
She pulled out a croissant from her backpack and watched the street performers.
“This was one of your dad’s favorite spots,” I said. “He used to sit here for hours, playing his guitar.” She nodded. It was like she knew.
“I guess he’s on a boat now, going down the river,” she said then.
I can’t write. All I can do is read. Sometimes there are discoveries that seem relevant. This is page 137 of Swann’s Way, Richard’s book, which I am reading here in Paris. There are dried rose petals pressed to the page. I suspect that he picked them in the garden beside Shakespeare & Co., where he bought this paperback years ago. I was there yesterday, and I knew exactly where he used to sit to read or write in his journal. It was exactly where I sat.
“Come and bear your aged friend company, he said to me, “like the nosegay which the traveler sends us from some land to which we shall never return, come and let me breathe from the far country of your adolescence the scent of those spring flowers among which I used to wander many ago. Come with the primrose, the love vine, the buttercup; come with the stone-crop, whereof are posies made, pledges of love, in the Balzacian flora, come with that flower of the resurrection morning, the easter Daisy, come with the snowballs of the guelder-rose, which begin to perfume the alleys of your great aunt’s garden ere the last snows of Lent are melted from the soil. Come with the glorious silken rainment of the lily, apparal fit for Soloman, and with the polychrome hues of the pansies, but come, above all, with the spring breeze sill cooled by the last frost of winter, wafting apart, for the two butterflies that have waited outside all morning, the closed portals of the first Jerusalem rose.”
Home again, back from Paris. Adele had a tea party for all of her dolls outside. I was sitting on the little picnic cloth as she served me and I felt myself swelling into that bright kind of happiness again, just enjoying the sunlight and the day. And then a cardinal flew over us, singing. He sat right above us on the wire watching us and chipping at his song. And I felt it again. The magic, the watching, the feeling of being truly seen by him. Love is the other dimension, I realized. The dimension we lived in with him.
I am inside now typing this, and a photo just came up on his computer screen, from that screensaver of photos from Kauai. It is a closeup of Richard’s face and he is wearing sunglasses, and there is something I have never noticed before: Adele and I are sitting on a towel, laughing together, two tiny figures reflected in the lenses of his glasses. He took a photo of himself watching us.
And now it keeps coming up to watch me.
“Reality, noble, does not refuse herself to the one who comes to prize her, not to insult or take her prisoner. There lies the unique condition we are not always pure enough to supply.” --Rene Char
Why did he have to suffer the way he did? It is eating me, the way he suffered. The photographs taken during the illness—I can hardly look at them. His eyes say, “I don’t believe this. How am I going to live through this?”
There are rubber gloves and wipes behind him in this framed picture. Why would anyone--why would my mother--frame this picture?
This whole story follows a pattern of sacrifice and dichotomy. One becomes the other, emotion becomes its opposite, as it has always contained its opposite. It only broke into opposites in order to know itself as whole. God only broke into life in order to know him-herself as divine. We met ourselves in others in order to know ourselves as beyond self and other.
There is a paltriness to all the stories, Richard tells me when I go inward and hear his voice, even the good ones. Each one is a fragment and if you took them all together they still would not even begin to suggest the magnitude of the being who was living through them.
“I’ve grown under its skin, this container I’m in,” I tell him.
Of course, he says. Live your stories, live your life as the gift it is, learn from it, and above all—enjoy it, he answers. But you know now. You are not your stories.
I am not my story.
He is so much bigger than any of this, so much freer. He is not that suffering at all now.
Adele and I were driving out toward the western suburbs to see a friend and the car died. It started burning and smoking. The engine and oil lights went on and it sputtered out on a very busy street. The car next to us slowed and the woman called out through the window, “Are you okay?” Then her husband got out and pushed our car several blocks around the corner into a parking lot so we would be safe, while she drove beside us with her flashers on. He looked under the hood, and they stayed with us until AAA came.
“Thank you!” I said. “But we will be okay. AAA is on its way. And this is your Saturday night. This isn’t how you want to spend your date night!”
And they said, “What? The girls are at home. . .we’re just happy to be out. We don’t need entertainment when we’re together!” I knew the feeling, and then I told him about Richard—how we didn’t need to do anything to have a good time, how we could be totally giddy just going to Whole Foods, eating the samples and smelling the candles. “Just always enjoy each other!” I was saying, and they were hugging and we were all crying a little.
We had to get a tow all the way back to our town, and then call a cab, because we couldn’t put Adele’s carseat in the frontseat of the tow truck. The truck driver waited with us for the cab, and then the cabdriver was extraordinary—a beautiful, kind man named Honore, which was the name of one of Richard’s ancestors, the first Adele Fammeree’s brother.
It was all like being a hitchkiker. You never knew what the day would hold. You met people and had to read them, decide who to trust, Richard used to tell me.
Honore took us home. And he turned off the meter halfway there and wouldn’t let us pay him. He kept singing little songs in French creole about God and faith, and it felt unreal, like we were being ferried, protected somehow.
The whole ordeal took hours, and exhausted, finally home, Adele and I just sat on the front porch together in the midst of one of those sunsets when the whole world swells into light. I was watching the sun, thinking of the extraordinary kindness and faithfulness of Mr. Honore—when I realized that he had reminded me to remember God, the way Richard himself always had, and I felt that Honore was Richard somehow, an angel. I felt Richard everywhere surrounding us—a boundlessness, a presence.
And then we heard the music. . .guitar, violin, people singing spirituals wafting out through the trees:
I went down by the river to pray, studying the good old way. . .
It was coming from down the street. And before I could stop her, Adele got up and started running toward the music. I was running after her down the street, and I thought to myself, What would Richard do? And I knew he would have just gone in to this party with his guitar and had a good time. So I stood there with Adele at the gate, like two vulnerable, curious children. Eventually someone saw us— Gary, another kind man, a writer and musician, I learned later, and he opened the gate and said, “Come on in!”
Adele ran back home to get her guitar, and Gary showed her how to play her first song. And we listened and sang:
my brown-eyed girl, oh yeah, my brown-eyed girl
freedom’s just another word for nothing left to lose
I sat there watching Adele play guitar with tears running down my face. I hoped that it was dark enough that no one would notice, but Gary patted my shoulder. “That’s okay,” he said. “I cried for two years after my dad died.”
Now I have no skin and seem to spill into everything I see, and I can even see pain in other people’s bodies, like tones of music. It is awful to see as much as I can see. No one would choose this. And it is not just seeing but feeling.
The light that was in Richard has gone into the world and the whole world is porous, too bright, too bright. I see through things into the light that composes them, and the spectrum has widened into colors I could never delineate or name. Everything is humming with color and pain. I have only once seen something close to this much color in the world, this much flooding light—just before Adele was born.
These are the portal people to me, my people, the ones through which I get a glimpse of the great and blinding whole.
I do not sleep well or normally. For a month, I woke up every night at exactly the time of his death.
I had my period for a full month too, my womb weeping, weeping, weeping.
Now it is 5 a.m. I am looking in the window—catching my own reflection—and something about the way the light is falling is giving me the shadow of a great, historical mustache. Very 19th century.
And I realize that what I feel is something I sensed I would feel after all of this—a new wholeness. I feel I am both a woman and a man now. Like I don’t need to seek completion in the way I once did because finally I already have it.
I tried to explain it to my friend. “I don’t feel like just a woman now,” I said.
“You don’t feel female?” he’d asked. He had been worried before, but now he was really worried.
“I do, but I don’t feel limited by that somehow,” I said, sorry to realize that I ever had felt limited.
I know Richard used to feel this. I used to sense him slipping around in the genders, the way he would wear pearls or scarves when he’d meet me for lunch. And it wasn’t just all those years of living off and on in Paris and Kauai—it was some inner balance, his feminine side coming out.
Maybe someday I will be able to meet another in this wholeness. Will I ever meet another in wholeness?
I carry his voice inside of me somehow. He is okay, he misses me, sometimes he even misses the feel of his own teeth.
And when I say, “I love you,” I can feel him rising, coronas of light going out all around.
The novenas, the kaddish, the candles and prayers, all of it really does something, I realize now. And I do believe—in the unified soul and the individual soul, in distinction in unity. I believe in the resurrection. I believe that the individual spirit is essential to the wholeness that is all of us, the oneness that we are.
Some shamanic and yogic texts say that this is the result of dying consciously—one goes on as whole, the individual tincture is maintained—and its work continues—even as it enters the impersonal ocean of consciousness which is change itself.
I pray to God to use me, and God answers, “It is not a matter of using you, I am you.
Which is not to say I believe I am God.
This feeling only comes to me in the humblest moments, when I am most broken.
“If I try to find words to express that transcendent Reality, I have to use images and metaphors, which help to turn my mind toward the truth, and allow Truth itself to enlighten it. I can say that the eternal world is like the white light of the sun, in which all the colors of the rainbow are present and in which each retains its own distinctive character. Or I can say it is like a symphony in which all the notes are heard in a single perfect harmony, but in which each has its own particular time and place. . .Or going deeper, I can say it is like a communion of persons in love, in which each understands the other and is one with the other. ‘I in them and thou in me, that they may become perfectly one.’ This is as far as human words can go.”
--Bede Griffiths, Return to the Center
From The Book of Questions by Edmund Jabes: “Love your ties to their last splendor, and then you will be free.”
Rachel Jamison Webster directs the Creative Writing Program at Northwestern University. She is author of the full-length collections of poetry, "September" (Northwestern University Press 2013) and "The Endless Unbegun" (2015) as well as two chapbooks, "The Blue Grotto" (2009) and "Leaving Phoebe"(forthcoming 2015), both from Dancing Girl Press. Her poems and essays have recently appeared in many journals and anthologies, including "Poetry," "Tin House," "The Southern Review," "The Paris Review," "Narrative" and "Labor Day: Birth Stories from Today's Best Women Writers" (FSG 2014).