My American grandfather was an unapologetic racist. Pure and simple. I know this because when I was twelve, during a heated conversation at the dinner table, he used the “n” word. I left the table, refusing to eat with him, attempting to disown him. My gentle hearted grandmother Catherine followed me:”Don’t take it so hard. He had some real rough experiences in the south. He was beat up real bad by some colored folks.” Well, gee, I wonder why. There has to be more to that story. Everybody has an excuse for bad behavior. Everybody has a reason for hating someone. For making someone feel like the “other” or “less than.”
In spite of or regardless of the racist proclivities of her father, my mom ended up marrying a man from China. A man of color. And, I might add, she put the excellent book by John Howard Griffin, Black Like Me, into my sweaty little bookwormy adolescent hands one summer. Thank you Mom. A thousand thanks. Have you read this book? If not, I urge you to put down what you are doing and find a copy.
It starts out like this:
“For years the idea had haunted me, and that night it returned more insistently than ever. If a white man became a Negro in the Deep South, what adjustments would he have to make?What is is like to experience discrimination based on skin color, something over which one has no control?”
Published in 1960, Black Like Me details the experience of a white journalist who was so consumed with the above question that he sought the advice of a dermatologist and temporarily altered the pigmentation of his own skin through radiation and medication treatments designed to alleviate vitiligo (a disease that causes loss of skin pigmentation). Following these uncomfortable treatments, and augmenting his new identity with makeup and a shaved head, Griffin proceeded to travel through various cities in the south, beginning with New Orleans.
By the end of his story, we learn that once Griffin’s journey is complete, chronicled and widely shared through public media, Griffin and his family become targets of hostility within their own hometown of Mansfield, Texas. This leads to their eventual decision to sell their homes and move to Mexico. They had to LEAVE THE COUNTRY to escape the repurcussions that arose from simply shining a light on racist conditions that existed in the segregated south. After receiving thousands of letters, the author concluded that many conscientious white citizens were more fearful of their racist neighbors than anything else. He also includes poignant anecdotes of his encounters with black individuals he met along the way, most who were deeply committed to forgiveness, determined that the proper response to racism is love, not hate. That the way to change is through peaceful, legal channels.
As I re read this book today, while so many of us grieve over lives tragically lost in South Carolina, with the Confederate flag waving high and proud over the state’s capitol, I ask myself, what has changed during my lifetime of half a century?
Within our own home, my family has always lived in a state of racial ambiguity and blurred racial identity. We have ancestors from China, Japan, Germany, France, Wales, Poland, Ireland and Russia. That we know of. My husband’s adoptive daughter is of Black and Japanese heritage. I have uncles who each fought on opposite sides of the Korean War. My daughter, a new graduate with a degree in anthropology, asserts that race is a myth, a concept that is not supported by biological science, but is rather, a cultural construct, determined by an individual’s physical appearance. But even this mere categorization doesn’t account for the hatred, the scorn of other, the assertion of superiority or inferiority of one category to the other. It’s all so deeply troubling.
This morning I listened to the statements made by families of those who were slain at the African Methodist Church in Charlestown. I couldn’t help but weep as I listened to their sincere expressions of grief that were interwoven by the commitment to forgive, to not return hate with hatred but with love. I am thoroughly in awe of them.
I sit here and wonder how long it will take for a real change of heart to occur. My dad would say, “It’s up to you kids now, to change the world. ” He said that on his deathbed, toasting my daughter and her collegiate cohorts. “ What I’d give to have my future ahead of me, “ he said, “ But I had my time, now it’s your turn. The future is up to you!”
That shooter at the church was only 21 years old. Our country, our world is crying out for healing. And it is days like this that I miss my kind-hearted, felonious miscegenistic parents something fierce.
Photo of Mom and Dad on a date in the late forties, also in Chicago.
Today would have been Dad’s 93rd birthday so I thought it fitting to post something in honor of that. I haven’t yet allowed myself to finish reading his journal, but today I found passages he wrote during the time when Mom had a serious relapse and was hospitalized or in a transitional home for more than 50 days. (He kept count in his diary of the days they were apart.) She had come home for a visit and he had put on a music show featuring songs they loved during the fifties and sixties. As he tried unsuccessfully to get her to smile, he wrote, they began singing, Chances Are…, Stranger in Paradise, Smoke gets in Your Eyes, and Just Remember You Belong to Me…
Dad wrote: ” Being from an oriental upbringing, I didn’t even know how to wear a “silly smile” but miraculously the singer was serenading for me at last.”
I don’t know. How did he endure it? Those years when mom was not well, when the illness took over and she felt nothing but mistrust and suspicion of him? How did he keep his heart so continuously faithful and even hopeful? One passage in his journal describes a moment of reprieve when Mom embraced him and said the words: ” I trust you.”
“The nightmare is over!” He wrote in relief. Only to have the next entry begin with the words, “Alas – not so fast…” when she relapsed back into her paranoia. But he stayed the course for sixty years and seemed to adore her to the last day. I write these things because I think we all want to believe in lasting love and fidelity. I know I do. I write this because I don’t want to forget that I witnessed it live.
Maybe this journal entry is part of his secret to being able to love all those years:
Tonight I stopped by the local Mental Health Association as they were screening a film called “Of Two Minds,” a look at mental illness from a sibling’s perspective. I was pretty blown away by the intensity of this film, by its raw pain, as it communicated the love between sisters, one well, one suffering from schizophrenia, the guilt, the unpredictability of the disease and all the rest. I did not expect to end my Wednesday evening weeping over my sister. But as I said to the evening’s facilitator, “better out than in.” Grief has so many layers. The loss of a loved one with mental illness is so complex, the loss began decades ago, and death, which seems so final, serves to open up layers of grief long forgotten.
Better out than in.
I highly recommend this film, though it is hard to watch, to anyone with a family, friend or loved one suffering from schizophrenia. Or if you love someone who has a family member with mental illness, this may give you insight into how hard the path can be.
Tomorrow I will write about perfume. Tonight I gently mourn my sister, Deborah and further forgive myself for all the ways I could not be there for her, by remembering the moments that we did have together.
Image: portrait of my sister, 1978, acrylic on canvas
Years ago, when I was a good little wife and devoted young mother and dedicated church goer, my baby was diagnosed with a brain tumor. He was given 25 to 40 % chance of survival after five years. He is either 100% alive or 100% dead, I thought. Today he is 100% alive and that is all that matters. So we went on, one day at a time, through two years of intensive chemotherapy, two tumor resections, four shunt placements and revisions, one episode of meningitis, four months on a feeding tube and weeks of physical therapy, speech therapy and occupational therapy. At the end of treatment, during his last blood transfusion, my son went into anaphyalctic shock and stopped breathing. For the first time, I had to step away, and as they revived my angelic three year old boy, I had my first real freak out.
When his treatment ended, I, the tiger mother disengaged from crisis mode and went into free fall. I’d have panic attacks on a fairly regular basis, unpredictably, in the parking lot when I attempted to do grocery shopping, running an errand, or on the way to a follow up doctor’s appointment.
Antidepressants made me break out in hives, so I turned to non medicinal interventions. Art revived me, I began to draw, write and paint. I went for regular massages. I took time to heal. I became a massage therapist specializing in support for life altering events. Then I started giving presentations at the local hospital. Presentations about what it felt like to be the desperate mom in a hospital room full of residents, with a sick baby, with all the uncertainty of the world hanging over your head.
I’m the mother of a brain tumor survivor, I’d say. I’d lead with my wound. I did that for a while. I told my story over and over. Sometimes with pictures. Sometimes with tears. Looking at it this way, and looking at it that way.
There is much to be said about telling your story. About being heard. It moves healing forward, that of your own and that of others. I believe that it’s a kind of magic.
And not to be disrespectful of my own process, but in a way, it’s just a story. At a point I got tired of identifying myself as the mom of a cancer survivor. It’s heavy. It’s hard. It got old for me. Thank god. Thank goddess. And now that he has been well for 15 years, why wouldn’t I prefer to focus on the wellness, on the lives of his brother and sister, on the mundane good stuff, like the fact that he just passed his drivers’ license test?
Who am I, then? It’s not the wound or wounds that define me, even as they teach me. I feel these days that I am in a kind of dance. A dance with the things that have hurt me, the things that bring me to bliss, what delights me, what devastates me, what angers and annoys, they are weather, I am earth. Like my friend, Elaine sometimes says, it’s just a story. I’m grateful for the stories, but I don’t wish to be lost in them.
We tell the story as long and as hard as we need to. The heart knows when to let go, when it’s okay to turn the pages and move ahead. Until then, keep on telling the story. If it serves you, it will serve others too.
Here are a few good reads on Narrative Medicine and the power of the story. Funny how sometimes the most unbelievable stories are the ones from true life.
Wisdom of the Psyche: Depth Psychology After Neuroscience by Ginette Paris, A neuroscientist suffers a devastating traumatic brain injury and finds her way back to health.
A Grief Observed, by C.S. Lewis The raw and powerful journals of the author’s grief process in the weeks following the death of his wife.
Paula, by Isabelle Allende The author’s tribute to the life of her daughter who passed away at the age of 28.
The Glass Castle by Jeanette Walls Candid memoir of a woman who grew up with parents who lived a nomadic, unconventional life and the impact of her family background. Told with brutal honesty, warm affection and surprising humor.
The Year of Magical Thinking by Joan Didion Story of the author’s grief process during the year following the sudden death of her beloved husband and partner.
Rescuing Patty Hearst, by Virginia Holman Relates the story of how the author and her sister lived under a kind of house arrest fueled by the delusions of their schizophrenic mother. A story of love and resilience in the face of severe mental illness.
My sister’s service is today. This song keeps running through my head, and if wishes were horses I’d have her riding some today. I can see it in my mind’s eye and it’s beautiful. Ride in peace, Deborah.
My sister died last night. She went so fast, too fast. Just 48 hours earlier, Tim and I had settled her into the inpatient hospice unit. She seemed to like it there.
Gee this is a really nice room. The colors are nice. It’s so quiet and peaceful.
Her voice was weak, but her dark brown eyes were open, alert and intense. The effect was magnified by the fact she had become emaciated over the past several weeks, fine wrinkles had formed on her cheeks, around her mouth and on her neck that were for a much older woman. Though she had refused chemotherapy, her hair looked surprisingly wispy, black waves accentuated the darkness of her staring eyes.
She was able to sign her own paperwork, Tim and I were on hand for support in case she was too fatigued. It took effort, but she did it. Then we talked again about how nice the room was, how very quiet it is, compared to the past week and a half she had just spent in the hospital.
I’ll bring the kids this weekend, we’ll spend some time, and the boys are talking about how they will cook you a Thanksgiving meal. She looked pleased.
When they come, make sure you put these bed rails down, she said. They make me look like a baby in a crib.
We talked a bit, the only significant belongings we had for her were the faux fur collar of mother’s I had brought to the hospital to keep her warm, and a sketchbook so that she could write down anything or sketch if she wished. I wanted her to draw like she used to. I thought it might make her feel better. She never got to use it. I was planning to bring photo albums and maybe a stuffed animal or a blanket from home to make things homey for her. I thought I had time. I thought I had at least another day, at least one more conversation.
Debbie indicated she was getting tired, and seemed impatient, so we said our goodbyes, I kissed her cheek.
She weakly reached out her hand to Tim, Come here. You got a cigarette?
Stubborn to the end. You had to kind of admire her. She was like the die hards who refuse to evacuate in the face of the hurricane of the century. Her life as she had fashioned it was important to her. She didn’t care what others thought of it. She didn’t want to give it up. The nurse’s aides were waiting to give her a nice bath and shampoo and make her comfortable for the night. You will sleep like a baby they told her. We blew each other a few more kisses from across the room before I exited. And that was it.
We received a phone call that there had been changes. Yesterday afternoon, I gathered all the children to see her. My cousin came too. I was shocked at how altered Debbie had become. She was doing that gaping mouth, tugging for air thing that Mom had done just before she died of pneumonia, only Debbie’s gurgling was far more impressive. She had a massive tumor sitting in her lung, she had been breathing with effort for weeks, I suppose this was the next step. The next to last step.
I sat next to her and held her hand. Began talking to her and then stopped. I remembered what my friend Elaine told me. You don’t have to say the words out loud for them to be understood. I get that. I got that. So that is what I did. I held her hand and if I tell you it felt as if our hearts communicated through the heat in our united palms, would you believe me? It happened. I felt that she knew I was there. She knew I loved her even in spite of all the times I shut her out, rejected her invitations to tea in her smoke filled apartment, angrily scolded her for hounding Dad for rent money so she wouldn’t get evicted, after she spent it all on cigarettes and lottery tickets and food for the neighbors who were worse off than herself so that there was nothing left to get her through the end of the month.
She wasn’t always like that. And as I sat there, the thought came to me: She was never truly like that. It was her illness. I wasted so much time being pissed at her because of her fucking illness.
What if she had an illness that made her lose all her hair? Would she embarrass me then? Or one that made her stink to high heaven? Would I find her so repulsive that I would refuse to be seen with her? Or any other number of things. Those behaviors that so vexed me as the little sister, that made me want to distance myself from her as the years drew on, and I became weary of what I perceived as bullshit, it was the disease, wasn’t it? And even so, who am I to judge her as I did? Aren’t we all weird, annoying, bothersome, imperfect and even just plain wrong in some way or another? What’s the difference?
I couldn’t love her the way she wanted me to. I heard the metallic chink of a single coin hitting the flimsy tin bottom of my heart. A beggar’s heart. I fell short, I fell short, self righteous ass that I am. Human that I am. I needed a superhuman love.
At that point I suspect that my Christian friends might say, pray to God for strength, ask him to open your heart and give you a greater love. Maybe my Buddhist friends would say, attachment brings suffering, life is an illusion, smoke and mirrors, let it go and see beyond to what is truth. The ground of luminosity. Is that what it is called in the Tibetan Book of Living and Dying? What is the cure for a tiny, meagre heart?
My motto of the year for myself was to be kind to myself and to be kind to others. It’s been a hell of a year. Mom died in April, Dad in July, Sister in November. My family of origin wiped out in seven months, with me, the baby, the sole survivor. I’m supposed to be the strong one. But my sister saw me truly: You always were a crier, she said to me, with some affection, after our parents died. After their deaths, our relationship softened and opened up a bit. All conditions, mostly laid down by me, were set aside. At least I have that. As youngsters, before her illness and the roughness of life changed her, changed us, we saw each other truly. I have that. We played together. I have that.
I did not want her to die alone, so I sent the others home to have dinner. I ordered Chinese food, and ate my chicken and cashews while she gurgled alongside me. I turned on the tv and watched part of a Twilight movie, giving my sister commentary, telling her, Don’t you worry about the vampires, it’s a love story, you know, it all works out in the end. I was careful to turn off the volume during the commercials. I didn’t want her final auditory memories to be of an advertising jingle.
I suddenly felt really stupid for eating takeout and watching a movie while she lay dying. I had been pretending this was a slumber party. Couldn’t I be a little more sacred? Craving silence, I turned off the tv, and held my sister’s hand again.
Just be here, I told myself.
You are not going to go through this alone, I told her.
Then I decided to be straight with her:
You forgive me for shutting you out sometimes, okay? And I’ll forgive you for abandoning me for the drugs and for pulling that mental illness thing. Deal?
Finally, I needed to sleep. The aide had made up the pull out bed next to my sister and I dozed restlessly. Something woke me suddenly. It was the silence. The gurgling had stopped. I leaned over to touch her. Her skin was still warm. The nurse came in and told me that her heart was still beating, very faintly. And then it stopped. True to form, I felt suddenly nauseous.
The nurse picked up the family photos I had scattered on the bedside table and asked me about them. As I gave a story for each one, the tears ran down, the nausea subsided, and clarity set in.
I feel sad but strangely light. She is not suffering anymore.
Before I left the room, I softly put my hand on my sister’s chest and whispered a prayer to God, Jesus, Mary, Buddha, Kwon Yin, Confucius and all Enlightened Beings, please enfold my sister’s soul in the light of lovingkindness. May she see her life illuminated in love and truth and wisdom.
Rest in peace, Deborah Annette.
We’ll always be sisters.
Image: family photo Debbie and me.