This is an excerpt from my to-be-published book “From Fear to Eternity: Embodying Grace to Those Who Suffer.” It is part of a chapter about my mother and me, after my father died. Wayne is my older brother and Sharon is his wife.
Eventually, Mom got involved in volunteering for Our House, a home-like hospice for primarily young gay men suffering from AIDS. Her resilience in the face of grief seemed to match the prevailing culture in Our House. Mom encouraged all the guys to eat more bananas and fresh fruit. She was sure they were not getting enough, so she brought them more fruit from home. She also loved to bake desserts, which the guys enjoyed, too.
Mom brought desserts to everyone: friends, acquaintances, and veritable strangers alike. Book store clerks, librarians, the gas station attendants who pumped her gas. Needless to say, my mother was very popular. But her grief continued unabated — she never stopped missing Dad.
In January four years after Dad died, Mom visited Wayne and my sister-in-law, Sharon, in Maine. When she returned home to Portland, she went to see the doctor because she had been feeling cold and run down. The doctor ordered blood work.
A few days later, Mom telephoned me.
“I have leukemia — AML,” she said.
A million things raced through my mind.
Oh, no! That’s awful!
People die of that!
No, don’t say that!
What came out of my mouth was stupid, “Are you disappointed, Mom?”
She got angry with me. “I’m upset!” she snapped..
I apologized and we talked about her first chemotherapy appointment. My background as an oncology chaplain had taught me what to expect. I knew it would mean in-patient treatment. So we discussed a plan for me to come be with her in Portland when she was hospitalized.
She would be in the same hospital where my father had died only a few years earlier and, to say the least, it held no pleasant memories for me.
AML, AML, AML.
It ran through my head like a mantra. Acute Myeloid Leukemia.
Shaken and terrified from the top of my head to the tips of my toes, I asked all of my oncologist friends about it, but they didn’t know as much about it then as they do now.
I prayed desperately for God to make Mom well. We were best friends. Since Dad had died, she relied on me. I was going through a divorce, had just moved, and changed hospital chaplain positions.
I relied upon her. Now this?
About a week later, Wayne, Sharon, and I all were in Portland at Mom’s house. We had settled into a strange new routine of preparing to go see her in the morning. One morning, she called to tell us the news that the chemotherapy had failed and she was being discharged from the hospital. The plan was to pick her up, take her home, and call hospice.
That was a shock. Somehow I thought there would be more than one attempt at chemotherapy. I was confused and upset — I couldn’t believe it was happening so fast.
My brother was angry. He thought the doctors should have caught the disease earlier or done something differently with her treatment. He also blamed Monsanto, where my father had worked, for exposing her to toxic chemicals, because for years Momhandwashed many of Dad’s work clothes.
After the shock came the sadness. Mom was going to die. We all began crying.
“Oh no, God, oh no!” I felt like my guts were being ripped out.
Although I knew it wouldn’t work, we tried to be “strong” for Mom. What a silly idea! As a chaplain, I knew that being emotionally honest was much better because then Mom could be real about how she felt, too. I guess we didn’t want to be puddles on the floor of the hospital room, unable to reassure her that we would be there for her with our love until the very end.
I felt like I was walking through quicksand; everything was just so damnably hard. And I was scared. I didn’t want to be a mute basket case, but I didn’t want to say something stupid again and make her feel worse, if that was even possible. I wanted Mom to know how much I loved her. This was going to be the most agonizing path we’d ever walked together.
She was sitting up in bed, her blond hair thinned by the chemotherapy, trying to smile, but her eyes began watering when they met mine. We both started to cry. I could say only, “Oh Mom!” as I rushed to her side, leaned over and hugged her shoulders, weeping.
“Honey,” she was crying, too. “I don’t want to die.”
“I don’t want you to,” I said.
“We don’t want you to either, Mom,” Wayne and Sharon said, talking over each other through their tears. They were on the other side of her bed, touching her shoulder and holding her hand.
Everything in my being resisted my mother’s death. She was too young. She didn’t want to die. It was too soon after Dad’s death. She wouldn’t get to live long enough, enjoy herself enough. We had plans together for a retreat and a trip to San Francisco. I needed her.
We brought Mom home to die. It was unutterably sad.
We entered into a different rhythm of living, with me sleeping in a bed next to hers at night for comfort (for both of us). If she woke up in the middle of the night, I would, too, and we would talk. She wanted to hear about my dream about Dad again, the one I had shortly after he died. In it, Dad was all dressed up in a suit, which was unusual in real life.
“Dad, you look so good!”I effused.
“I always look good,” he responded, clearly offended.
Dad was standing in an apartment. I just knew that it was an apartment with space for two people, not one person. It was meant to accommodate two. This was the dream I recited for Mom time and again, a vision that brought her so much comfort that we both cried. It was as if Dad were waiting for her in that apartment, somewhere beyond this life.
This led Mom and I to talk about what we each believed happened after this life.
She hoped. I believed.
I’d had the opportunity to talk to a number of people in the hospital who had had near-death experiences. I had also taken a leap of faith to believe in life with One who is Love, starting in this life and continuing onward.
Mom needed to air her fears about not being accepted by God in whatever came next. I listened and offered her reassurance that nothing could separate her from God, who is Love. I felt sure that God loved my Mom. I imagined — envisioned, really — that shortly after she arrived in the next world, she would be giving God instructions about how to treat Wayne and me.
We had a number of conversations like these, lying in our beds at night. We reminisced about good times and bad, such as my first divorce at age twenty-three.
My husband had married me without disclosing to me his un-medicated bipolar mental illness. His dysfunctional (meaning functioning with pain) tragic Southern family had kept it a secret from me. One day, he had a psychotic break from reality and he drove to Washington, D.C., to deliver a plot to assassinate Mu’ammar al-Kaddafi to Jessie Helms, and to submit his poetry to be published in Playboy magazine.
I decided to have my husband “put on hold” as a danger to himself or others as soon as he returned from his ill-conceived field trip to the nation’s Capitol. He proved himself dangerous by punching the Emergency Room psychiatrist who tried to examine him. Following a hearing, he was committed to Holly Hill, a nice private mental hospital of my choosing. Nonetheless, he hated me for it. And even though his diagnosis was clear, he also refused to take any medication.
My idealism was shattered. I thought any relationship would work if you just tried hard enough. I was wrong.
The United Methodist Church, represented by three district superintendents, questioned me about my divorce to ascertain if I was at fault. Although they cleared me of any wrongdoing, which seemed obvious to me, the process was painful and offensive, not pastoral. I needed to move on from the church, which I had been serving for five years. I was devastated. I was appointed to begin a new church, a work for which I had no energy at the time.
As we recalled that horrible time in my young life, I began to weep. Wanting to console me, Mom offered, “Come, sit on my lap.”
“No, Mom. I’m too big. I’ll crush you,” I told her.
“No, you won’t. Come here. Sit on my lap,” she insisted.
So, I did.
I balanced myself partly on the arms of the chair, so that my whole weight was not on her lap and I hugged her. I cried onto her neck. She patted my back, like she did when I was a child. She let me just cry and talk about my hurt. There was so much consolation in her arms. As we laid on our beds in her bedroom, I told my Mom how much I loved her again and how much I would miss her.
“Baby, you know I will miss you too,” she said. “I will always love you. And I’ll always be over your left shoulder. Just put your hand there.”
A hospice nurse came to Mom’s house to assess what medications we needed and a social worker stopped by as well, but that was it. They seemed to assume that I knew more than I did about the dying process at the time. So they left us on our own to cope with what was to come. I didn’t know what questions to ask.
Each day for dinner Sharon or I would make a major deal out of cooking a favorite meal. One night it was Chinese and the next it was Italian or Mexican. Naturally, we ate a lot of desserts. No holds were barred.
Mom ate less and less as her appetite naturally decreased. Her body no longer needed food. Yet being offered the variety of foods and participating in the ritual of eating meals together — laughing together over dinners — was ultimately important.
“What do you want today, Mom?” was the big question. We gave her whatever she wanted. Raspberries and Haagen-Dazs ice cream for breakfast? Perfect! No more vegetables for Mom!
One morning she looked at her morning vitamins near the sink and said to me, “I guess I don’t need these anymore.”
I teared up. “I guess not.”
It seemed we both were beginning to accept that she was dying.
Mom grew weaker and used a walker to get around the house. There were no more trips outside. She sat down on the couch with Wayne and me to go over her will and finances. She brought her jewelry box and called for Sharon so she could distribute her jewelry between her daughters.
Being a lover of books, Mom had an outstanding credit at Portland’s famed Powell’s Bookstore and another bookstore that she gave us to spend. She insisted that Wayne and I go spend the credit immediately so she could see what we bought. She told us that she wanted there to be no bickering between us. She wanted us to get along and to be close. Of course, we agreed.
It was overwhelming. I didn’t want Mom’s things; I wanted Mom. If only I could keep her. But I couldn’t.
Who my mother was in her life, she was in her dying. Generous. Fighting and accepting and reconciling.
One afternoon, she asked me, “Do you remember that mountain store in Santa Barbara, where we got that jacket for free because the clerk forgot to ring it up with all the other stuff we bought?”
“Yeah,” I nodded. I remembered that from a trip we took together.
“We need to repay that store. That was wrong not to pay,” she said rather thoughtfully.
Guilt struck me immediately. Here was my mother worrying about this seemingly petty offense while she was dying!
I took the responsibility for this stupid omission upon myself.
I thought myself an honest person and I felt responsible and ashamed by this stupid omission. I was causing Mom additional pain in her most awful time. That was how it felt to me.
“I will take care of it now,” I said, running to get my checkbook and look up the store’s address on the Internet. I used Mom’s envelope and stamp, and immediately mailed a check with an apology note.
My conscience could not rest until I had unburdened Mom’s conscience. I would never “steal” something from a store again, not even a few pennies in incorrect change.
Mom had been attending a Lutheran Church, which offered a Sunday night Jazz service. A jazz combo would play old standards and the minister would make spiritual comments interspersed with the music. At the end of the service each week, Mom would shake his hand and say, “Wonderful service. Next time, less talk, more music.”
The pastor would laugh goodnaturedly. I’d try to say something nice about his remarks as a professional courtesy. The service was pretty cool.
Mom decided that she wanted her memorial service to be held at the Lutheran Church and that she wanted the jazz combo and singer to perform. She asked me to call the minister to arrange it. He told me that the jazz group not only wanted to celebrate her life after she died, but also while she was alive. When could they come over?
The singer, drummer, guitarist and base player arrived to play for an hour one afternoon in Mom’s crowded living room, taking song requests from their guest of honor. She sat on the couch like a queen, reveling in the music, tapping her foot and nodding, smiling and applauding at the end of each song. It was amazing, life-giving, and so profoundly beautiful! Such a generous gift!
One night shortly after that, Mom lost consciousness. Her breathing became raspy and deep, while I lay sleepless at her side. She still was breathing regularly, but I knew that she was going.
“Oh, Mom…” I rasped as my tears begin to flow.
I went to get her prescription for liquid morphine and administered a few drops into her mouth. I thought it might make her more comfortable, since they give morphine by IV in the hospital when people are dying. I wept and stroked her forehead. She didn’t respond.
It is said that the sense of hearing is the last to go. So I told her over and over how much I loved her and that I would be all right on my own. She would be with Dad and she would be fine with the God who loves us. I laid back down by her side and tried to sleep.
Her breathing was so loud and I was so bone weary, I finally slipped out to the living room couch to try to catch some sleep. At daybreak I awoke and went back in to see Mom. She was no longer breathing.
I ran out of the bedroom to call Wayne and Sharon upstairs. Just like Dad, Mom had died when none of us was in the room.
I felt like I had let her down. I wished I had held her hand until her last breath. It took a while to acknowledge that she would not want me to carry that burden.
I had done the best I could as her daughter, just as she did the best she could as my mother. Neither of us was perfect in relationship to each other. But our love was enough.
Mom wasn’t perfect as a human being, but she really, really loved me and I knew it. She was such a great mirror of God’s love.
God’s love is unconditional. I know my mother’s love was unconditional. She loved me no matter what. I was lucky. I was flesh of her flesh, bone of her bone, and she knew it. I was hers and she would never let go. If God’s love is like that, and I trust that it is, I get it because I experienced it with my mother.
I have known a love that is stronger than death because I can recall it and feel it even now.
I have experienced a deep love and acceptance that is the root of my ability to attend to other people that way. Certainly, other issues have gotten in the way, which have had to be attended to and continue to need attention.
My mother’s love has been the strongest, most visceral, and most powerful embodiment of God’s love to me. Her love burns brightly in me. She was present for me in the extremity of my deepest feelings, just as I was present for her in the midst of her deepest feelings.
Mom has inspired me to care for people in their living — and especially in their dying. Care for dying people that was informed by Mom’s dying and death became a focus of my professional calling.
Witnessing and grieving her death was yet another death-and-resurrection experience in my life, a pattern I came to recognize in all the major ups and downs of facing sometimes harsh reality.
I would never “get over” Mom’s death.
I would never stop missing her; but with time’s passing, it would not be so sharply painful. Sometimes the waves of grief would knock me over when I least expected it.
Yet, I would put my right hand on my left shoulder, feel well-loved, and remember Mom in the words of e.e. cummings, who wrote:
“i carry your heart with me (I carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)….
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart (i carry it in my heart)”
— e.e. cummings, [i carry your heart with me(i carry it in] Copyright 1952, © 1980, 1991 by the Trustees for the E. E. Cummings Trust, from Complete Poems: 1904-1962 by E. E. Cummings, edited by George J. Firmage.