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Black Like Me and Racial Ambiguity

IMG_4190My 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.

photoImages:
Georgia O’Keefe cloud painting in stairwell at Chicago Institute of Art

Photo of Mom and Dad on a date in the late forties, also in Chicago.

What’s a Poem Good For?

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My Sister. 

Lost you once

Lost you twice

Kept on losing.

Love you

Hate you

Miss you from before the hard times.

I’m not going to cry,

I’m not going to cry.

Always in my heart –

For the better

For the worse.

This song’s for you:

Happy Birthday Serenade

portraitToday 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:

noteHey Dad, here is a song for you and Mom, modernized a bit. Hope you don’t mind. Love you lots. Happy Birthday and Happy Day of the Dead.

Of Two Minds, a film about sisters

IMG_1414Tonight 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

It’s Just a Story

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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. OLYMPUS DIGITAL CAMERA

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. Copy of Dream 4 001

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. OLYMPUS DIGITAL CAMERA

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.

Images: One: my baby  at 4 months old, 9 months prior to diagnosis.Two: self portrait, Monster Me. Three: self portrait, Mommy Goddess, oil on panel. Four: Dogs in Heaven, acrylic on canvas.

Wild Horses, Song for My Sister

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.

We’ll always be sisters

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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.

The Grim Reaper Knocks Thrice

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It had to have been a mistake. It was my sister who belonged in the group home, not me. But here I was , other patients milling about, and I was one of them.  I had dreaded this as a child, the thought that my freedom could be taken away, or worse that I would lose my faculties or my sense of reason. The first fear was drummed into me from a young awareness of the cold war and from having a father who had nearly escaped life in Maoist China. I used to think, “I could have been born in China. I could have been a communist. I could have been in a prison camp. I could have been killed for having been a baby girl.” Generally, these thoughts made me grateful. The second fear came from watching my mother and my sister during their worst moments. In my mother’s case it was when she suffered her “breakdowns.” My sister’s low points were more dramatic. I have a collection of memories featuring her staggering across the living room, high on drugs, while my anxious, pajama clad parents called 911. Consequently, I never touched drugs or alcohol. “Keep your wits about you,” I counseled myself. 

How did I end up here? 

I was being interviewed for intake. Lydia was nice enough. You could tell she cared what happened to us.

“ Now then, everything seems to be in order. Do you need anything from home? Or is there anyone you would like to call?”…………

“No.” I was bewildered. “Thank you.” 

Then you can join your sister for group. “

I looked up and there she was. She looked happy. Happy to see me. Happy that little sister was here, and   that she was not alone.

 “Let’s make this a family thing” I could see this thought clearly displayed on her face. 

Inwardly I was cringing, but what choice did I have? None. It had been taken from me.

I started to think, 

“So this is what my life has become.”

Opening my eyes, I found that I was in my own bed, in my own home, and it had all been a dream.

My sister wasn’t always repulsive to me. Far from it, I desperately wanted to be just like her. She was the older princess of the family, with long, sheet like black hair and exotic features inherited from my mother’s side of the family. She could draw beautifully. Her passion was horses and I remember admiring sketchbook after sketchbook of horses, jumping , grazing, leaping over fences. I remember one night, I must have been six and she 13, when we sat on her bed and made tin foil lanterns. She patiently showed me how to make the pattern I desired, and then poke it carefully with a sewing needle. When you held it to the light, it looked like a mini constellation.  Hers was in a pattern of Pegasus , the horse with wings. It was magnificent. God, I worshipped her. She was quiet. She was smart, always on the honor roll.

I remember her helping mom dress me for my First Holy Communion. Mom made my dress of delicate white eyelet, and I wore white patent Mary Janes. I think she let me wear stockings for the first time. I complained that my feet hurt.

“You have to suffer to be beautiful, “ they both teased me.

I looked at both of them in awe. I wanted to be like them so much it hurt.

We were both presented with rosaries for the occasion. Each in its own petite leather purse with a holy picture inside of the Virgin Mary, hers was pale blue crystal in a white leather case, mine a ballerina pink in burgundy. I hated pink. Maybe I hated pink from that exact moment, simply because pink was something my sister did not have.  For years I perversely coveted her rosary, her clothes and her friends, her room and  her very self. I would have much rather been her than young scrawny me,  down to the last detail.

When she did grace me with time to play together, I was in heaven. We played school, she was the teacher, I was the student. We played Mission Impossible. Silly putty made the perfect substitute for plastic explosives, so that no room was off limits to us. We simply placed the putty on the doorknob and BOOM – instant access. We were quite happy in our imagined world of secret missions and exploits to save the day. We tied each other up with invisible bonds and then each of us would take turns getting rescued by the other.

Seven years older than me, my sister was always an entire phase of life ahead. Her bumps in the road became my warnings.

“Don’t take that route, the road’s out.”  was the signal when she ended up in the hospital with a drug overdose.  As a result I never so much as drank wine until I was forty. As we got older, I would not give up the idea that I could still rescue my beloved sister from drugs until well into adulthood when I had children of my own. Maybe it was the exhaustion . You try and you try. I know the Chinese are famous for perseverance; they built the Great Wall , after all. But then again,  I am only half Chinese, and was raised in the land of boundless opportunity and instant gratification.

Dad was always getting offered promotions attached to relocations. When we moved, yet again, this time to Texas, my sister seemed devastated. Truth is, I never really knew what was happening to her. She was a quiet, Madonna like beauty, a creature different from myself, who graced me with her playtime, and rebuffed me as she discovered dating, and ultimately , LSD.

So now, she is dying. She won’t admit it, doesn’t want to look at it, but the reality is that she has end stage lung cancer that she refused treatment for and now it’s too late to do anything but seek comfort care. She didn’t tell anyone in the family she was sick. Meanwhile, the lung tumor grew unchecked so that it cracked her ribs and is now in her hip and in her lymph nodes. We found her on the floor in her apartment after Hurricane Sandy and she couldn’t get up. From her hospital bed, with labored breaths, she told me she doesn’t want to move to a facility to be closer to me.

Why should I turn my life upside down just so I can be ten minutes away from you people?  I want to stay in control of my life. Besides, I don’t want to put you through the same thing you just went through with mom and dad. 

Well guess what, sis, I am going through it, and it bloody hell doesn’t matter in the least where you are, because even when your  craziness got to be so much that I tried to shut you out, here you are, in my heart, reminding me that I love you. You are my big sister after all.  And here we go again. Image

Images: study of William Blake’s Ancient of Days, china marker
Ancient of Days reinterpreted with God as a Woman, oil on panel

Hospital Diaries: Lessons of a Tiger Mother

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The first time I was in the presence of a dead man, I wasn’t afraid. He had been terribly ill, and everyone knew he was nearing the end. What I noticed most of all was how still his body was: there was no soft up and down motion of the chest and belly that parents instinctively look for when they check on their babies during the night. His skin was ashen and tinged blue. His family members stood silently at the bedside, sending him private messages of farewell, I imagined. I remained in the room for only a few minutes while offering my condolences.

The next time I was in the presence of a dead man was more of a passionate encounter. I escorted a man into the viewing room where his deceased brother’s body was laid out. The man began to punch the air violently, and I took a step backward, a little afraid I might get in the way of his fists. Tears flowed down his cheeks, and he rocked back and forth, wailing.

“Can I give you some privacy?” I asked, poised to step out of the room.

“ No, please stay, you can stay. “

The man seemed to need a witness to his grief. So I stood by and witnessed his tears, the rapping upon his chest with his fist, as if to knock the pain out of himself. I watched him gradually quiet down, then reach out and touch the emaciated cheek of his brother. He stroked the dead man’s forehead tenderly and kissed his face, telling me how his brother had always been as strong and healthy as an ox, how unexpectedly he had gotten sick.

“He was such a good brother to me, “ he said. “ Such a good brother.”
“He has a kind face,” I said. “Anyone can see that. “
The man smiled and took my hand. “Thank you,” he said.

I often encounter people who are at the end of life in my work as a hospital ombudsman. I was drawn to this work as a way to shine a light on my fears, death being one of them.

Each dying person has his or her own way of leaving the world, and each mourner has his or her own way of dealing with being left behind. I have watched a gray-haired, newly widowed woman grasp her dead husband’s foot and plead, “Don’t go! You said you’d never leave me – how can this be happening?” I have met another gray-haired widow who wore her wedding ring on a heavy chain about her neck, like an albatross.

She told me that in all their years of marriage, her husband had never once taken her in his arms and told her he loved her or that everything would be alright. “I’m glad to be rid of him, “ she nearly spat. “If only it had happened sooner, I could have had a second chance at life.

I have seen a husband enraged at the doctors and at the world when his wife was pronounced dead. “Keep everyone away from me!” he cried. “If Jesus himself wants to talk to me, I swear to God, you keep him away!”  He finally unclenched his fists long enough to pull his wife’s hairbrush out of his pocket. A few strands of her hair stood out in a delicate spray from the bristles. He began softly brushing the hair away from her face and gently tried to close her eyes that stubbornly kept popping open. Brush. Brush. Brush. No one dared disturb him as he remained at her side, sighing and brushing.

As a healthy young woman, years before I came to work at the hospital, I gave death little thought. Then my firstborn son, Joshua, was diagnosed with a malignant brain tumor right about the age when most babies are taking their first steps. The fear that he might die smacked me squarely in the face. His father and I brought him home from the neurologist and sat in the parking lot in front of our apartment for a long while, not wanting to move. The next day we would be taking our baby to the hospital, and he might not be coming home again. I think we wanted to believe that if we just stayed there, silent and motionless in the car, everything would remain as it had been.

We went inside, and I held our son. I got out the tape recorder and sang to him, recording his cooing responses, the little babbling sounds he made, and a baby chuckle or two. I got out my sewing scissors, cut a lock of his hair and placed it in an envelope. I held him close for a long while and inhaled deeply, memorizing the scent of his skin.

I was in a state of continual mourning during the invasive surgeries and brutal chemotherapy treatments that followed. I wondered what the stream of young residents thought of me, the weeping mother, as they stood there and discussed their “case” in quiet clinical tones as if I weren’t in the room. Sometime during the complications, fevers, infections and subsequent surgeries, I was transformed from a courteous, civilized human being into a fierce mother tiger, complete with claws and fangs. I stopped crying and started throwing people out of the room, or gave them such a hard time that they wished they had never come in. I summarily fired the surgeon who’d sutured through the chemotherapy catheter she’d inserted into my son’s chest, rendering the device useless and ensuring that he’d have to repeat the invasive procedure. Rule Number One of the Tiger Mother: Regard all unfamiliar nurses or physicians as a potential threat until they proved themselves otherwise. 

Midway through the chemotherapy, Josh was so weakened that he was placed on a feeding tube. Worried that he couldn’t tolerate the rest of the chemo, one of the doctors visited me at the bedside to discuss measuring him for radiation treatments as a backup plan. I told him to get out of the room, I would take my son out of that hospital and dig up wild roots in the desert to cure him myself before I’d let anyone radiate his brain. Thankfully, Josh’s condition improved and we never had to discuss the backup plan again.

During the two years that it took to complete Josh’s chemotherapy, there was a period when I woke each morning only to sense death close at hand. I saw it all around me. A flower wilting in the garden or the evaporation of the morning dew on the grass could cause me to break down. Nothing lives forever, but it seemed wrong that a child should have to face death. Death was for people who had lived their lives, tasted happiness, made mistakes, and had a chance to make amends; it was not for babies.

Rule Number Two of the Tiger Mother: Understand your Enemy. I began to read books and to ask doctors and nurses about the process of dying. I needed to know what could happen to my child if his treatment did not go well. As his mother, I was supposed to test the waters for him, to have some idea of what could be ahead. I wanted to know about the final moments of life: Would it hurt? What shuts down first: the beating of the heart, or the breathing of the lungs? Would it be fast or would it be slow? Those were hellish, morbid, crazy days.

One day a fat envelope arrived in the mail. It came from the secretary of a church I no longer attended. I barely knew the woman, but apparently Josh was on her prayer list. Her note said that she thought I would appreciate the enclosed article. That was all.

I read the article, which was about life after death. It said that the body is a womb for the spirit: just as a newborn baby doesn’t need the womb after it is born, so the spirit sloughs off the body at the moment of death and passes into the next realm. As alienated as I felt from any church, this concept appealed to me.  It didn’t stop me from feeling sad or afraid, but it helped me to make a kind of peace with what I could not control. The birthing analogy put my feet on the earth again. It stopped the haunting. Rule Number Three of the Somewhat Evolved Tiger Mother: Find a way to make peace with that which you cannot control. 

It was difficult to watch so many of Josh’s young hospital roommates succumb to their diseases, even as my own son was spared. Josh completed his treatments, and in the years to come I would watch him grow stronger and eventually walk, go to school, play baseball, hold his baby brother. Tiger Mothers learn to take their blessings as they come, and to take them in with all their hearts.

Two Christmases ago, a baby girl was brought into the emergency room where I work. She wasn’t breathing. You could feel the wrongness hanging thickly in the air. The doctors and nurses worked on her for along time, but the overall feeling was that she was not going to make it. She didn’t. I sat stroking the back of the baby’s father as he leaned over, sobbing, and knew there was nothing that any of us could do or say to fix this. This was not a fixable thing.

The rest of the family filtered in: the mother and the baby’s older brother, just a toddler himself: an aunt, an uncle, a cousin. The nurses went to work, gently cleaning and wrapping the baby’s body, placing a new pink stocking cap on her head and laying her in her mother’s arms. Then came the ritual cutting of a lock of the baby’s hair, the ink prints of her hands and feet. The nurses softly murmured, “What pretty hair she has, “ and , “Look at her delicate fingers.” The baby’s brother, not understanding all the commotion, gave a tug on his sister’s gown. He must have thought she was sleeping. Someone handed him a teddy bear. We all stood there at the edge of the family’s grief, holding steady and bearing witness with our quiet presence.

When I visited a recent Andrew Wyeth retrospective in Philadelphia, I should not have been surprised that my favorite painting was of a dying woman: Wyeth’s neighbor, who had battled a terminal illness. She is resting outside in the night, upon a wintry landscape of rolling hills, her glowing body melting into the snowy hills. In the distant background one can see a ghostlike figure walking upright toward a brilliant star hanging low in the sky. The painting is titled Christmas Morning. It’s holiness took my breath away, and it comforted me for a long time after I returned home.

*Author’s note: A version of my essay was originally published in Sun Magazine, December 2007 copyright Renee Watabe under the title “Lessons in Dying.” This reworked version includes additional passages to honor the analogy of a tiger mother which for me adds significant meaning to my story.

Image: Passion, oil pastel on paper (black and white copy) Renee Folzenlogen

How does my garden grow?

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one month following mom’s death 5/25/12: Dad is very weak. I took him to the garden anyway. It’s been raining all week so the flowers are blooming like gangbusters. He loves sitting even in the slightest hint of sun  and strips off his shirt to warm his bones. There is so little flesh on them, not much to speak of anyway. We discuss each plant, taking note of how many inches this one has grown, if there are any new leaves or buds, he leaves nothing out. They are like children, each with a personality, what mood are they in today?

Going back in the house has to be done in relay segments, he is so tired. Climbing the steps takes every ounce of effort. I’m in awe of his determination. He doesn’t complain or whine, instead, he bears down as if in labor. He braces himself for the next step and all it will take from him.

In the house now, we have about five steps to cross the threshold to his room and the edge of his bed.

You don’t know how fast I want to get into my bed now, he said with a chuckle, still three steps away.

Lickety split? In two shakes of a lambs tail? I felt a sharp pang as soon as these old fashioned expressions of mom’s passed my lips.

Dad sank to the edge of the bed, quickly, his knees giving way with relief. He lay back panting with gritted teeth. When the dust settled and his breath was peaceful, he said, Well kid, I‘m getting weaker, day by day. I don’t want to scare you, but if upstairs isn’t ready for me, I have to wait, but if upstairs is ready for me, I can’t resist. That’s the way of life. 

Then he talked about each person in the family, how the kids will take his passing, how my husband Tim will be. He’s the black cat of his family. What, Dad? You know black cat, misunderstood. I thought maybe dad was having a bit of dementia, until I realized he meant that Tim was black sheep of the family, the Ohio born artist, who ran away to NYC, striking out on his own, against convention. He reminisced about the first words he ever said to Tim: Take good care of my little girl. 

sometime in June: Once the passionflower bloomed, I desperately wanted dad to see it but he  could no longer walk or even stand. One warm day, Tim scooped dad up in his arms like a baby or a bride,  lifted him off the bed, down the steps and carried him along the garden wall so he could see  and smell the passionflower blooming on the vine for the first and last time in his 92 years of life.

three days after he died 7/6/12: Suddenly everything I look at hurts. The garden. The tree he planted. the things that he loved remind me so acutely of him. My stomach hurts. I’m suddenly a ten year old – it’s like when I’d be at a slumber party, hit by a wave of  homesickness in the middle of the night. Dad would have to come and get me. I remember him fetching me at the door, driving me home in the dark and putting me back into my own bed, safe and sound. It’s like he’s left me at a giant sleepover in the big wide world and now there’s no way for him to come back, pick me up and take me home.

I forgot the physical pain that comes with grief. My body hurts all over. I need to take it slow. I need to paint and to write.

Today 10/29/12:Those gerbera daisies are in full, crazy bloom, don’t they know that Hurricane Sandy is sweeping its way to us? Mom’s high school friend sent her a little pot of these daisies in the hospital, the week before mom died.I planted them in the garden and they have been quietly, greenly growing, no second blooms all summer long. Suddenly this weekend they exploded into this ridiculously lavish cluster of multicolored daisies, spanning several feet across in the back garden where dad used to sun himself. I filled several vases this morning with them, waiting for the rain to hit. Image

Nature can be the ultimate at soothing grief. Thinking of mom and dad today. Speaking of Mother Nature, be safe, stay warm and dry, everybody.Image

Images: dad looking at the gifted gerbera daisy plant at first bloom in May, same plant in it’s second bloom, today, about six months later.