If she hadn’t died of metastasized lung cancer, my sister, Deborah, would have been 59 years old today. In November, on the one year anniversary of her death, I tricked myself that I had reached a completion in a cycle of mourning for her, and met that day with a sense of breathless relief, as if crossing a finish line after the last leg of a long race, ready for the ice water and heading to the showers. I felt that I was putting something behind me.
Ha ha ha!
This spring I am interning at the Mental Health Association of Essex County. One of my key assignments is to co facilitate a sibling support group for individuals with a brother or sister who is living with mental illness. My tribe. Just like me. My role in the group is not about me, and yet, thanks to my sister, I am steeped in the experience of the group from the tips of my toes to the top of my head. Working in the group, and approaching her birthday, I slowly caught myself going a bit numb. Averting my eyes from the obvious herd of white elephants entering the chambers of my heart, the memories of Deborah and her craziness, the ways she hurt me, the ways she hurt herself and, despite it all, how much I miss her. The missing began long before she died, when she first became ill. All that much more, then, do I miss her, truly.
So this weekend, I found myself paying a shiva call to the family of a beautiful young woman, whose vivacious and generous life seemed to end midstream, too soon, unfinished. The whole way there, I cried for my sister. In awe, in gratitude, I cried. This is what I have missed, I realized, the open grief. The loss of the one, resonated with the loss of the other, like the vibration of a bell, ringing out in concert, in sympathetic response. This is life. This is community. We share in the fullness, we stand together in the loss and in the next breath the rebuilding begins, quietly, subtly, relentlessly, as it should be. But you need to cry, you need to take those gulping sobs of oxygen in and let that river of tears flow out, to keep the cycle going.
The process of grief is what it is. It patiently waits for you to catch up, to surrender, so that you can keep going forward to what comes next.
Happy Birthday, Deborah. I’m still pretty pissed for the havoc you caused. But I’ll get over it. I love you lots. You beautiful, wild thing.
As a footnote: I recently became aware of the Blog for Mental Health 2014 Project. Since I truly believe that the more we can share about our experiences and insights, trials, tribulations and triumphs in the struggle with mental illness, I am excited to participate in this project. Read more about it here, decrease stigma, encourage wellness, and share your experiences too.
“I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”
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
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.
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.
When positioned squarely in the fourth decade of life, I found it necessary to fashion for myself a motto for living. It was twofold and I owed its birth to my Mom. After an unexpected relapse of Mom’s mental illness (of the paranoid schizophrenic variety) she needed me in a disconcerting, helpless sort of way. I was suddenly the Mother of a 79-year-old duckling. And she was my Mother. My nutty, but beautiful mother. The only mother I had.
I came from her body, from her heart. In some way shape or manner, I mysteriously passed through the gateway of her soul and flesh and blood and guts into this world. I am here and she was insane. Sometimes frighteningly so. Sometimes just pleasantly so. I have seen her in a spectrum of roles, from the doe eyed, terror-stricken woman trying to hide from our perfectly normal neighbors – trusting only me, me at age 5 and me at age twelve, me at age 16, and me at age 43. I have seen her look and talk like a criminal, wayward and delinquent with eyes signaling plans of something very naughty. Oh, she could be wily. She was wily as she flushed her medication down the toilet and got herself worked up into a psychotic mess. She locked the door to her room and called me – the one blessed soul in the universe that she trusted. She phoned me to get the police.
Tell them to bring a lot of strong men. Your father is murdering someone in the next room. I can hear him.
Dad was as skinny and brittle as an old twig that Mom could have snapped in half with her strong, psychotic, though mildly arthritic hands.
Which brings me to the first part of my motto. The part that I stole from the movie “Taxi Driver.” I waited nearly 30 years after its release before I could bring myself to watch it, because the previews of it scared me. I was afraid. The subject matter seemed too close to home, too similar, I imagined, to my Mother’s imaginings. I did not want anything to even remotely reinforce the terrible reality that existed for her and that she tried to convey to me at times. I spent many of my interactions with Mom trying to redirect her – redirecting, reorienting, and regrounding – for her sake and for my survival.
I took the first half of my motto from the taxi driver’s friend. In the movie, he’s the seasoned street philosopher who tries to cheer up the soon to be renegade and spinning off the edge taxi driver by telling him, We’re all screwed. More or less. I took surprising comfort in those words. I liked their fearless ring of truth. Tell it like it is, I thought. Don’t shy away from reality. We’re all screwed. More or less. Simple. Straight and to the point.
The motto came in handy in my work as an advocate in a hospital emergency room. One night I saw a man come in on a stretcher. He had been smoking his crack pipe, the police said, in an abandoned building. The man was screaming, Oh God, oh god, oh god! He was long, skinny and dark, except where the skin was falling off of him; there he was pink and red, muscled, bloody and raw. Blood was dripping from what was left of his fingertips. The image rivaled even my mother’s most macabre ramblings.
You heard we were coming, right? Tell me you got our call. The medics were desperate as they wheeled the man in quickly. Everyone flew into action. The man was screaming, though not as loudly as I thought he would. I was surprised, thinking his screaming would be worse, considering the look of him. He’s probably still high, someone commented.
This part of my motto was given to me by the universe. It happened in the waiting room of the same emergency department where I saw the burning man. I was working, and I was rounding the room, trying to give people some small encouragement, knowing there was no hope at the moment, knowing that the wait time was approaching four hours long, and that every bed was full, and that five ambulances were lined up at the door and that the nurses were doing their damnedest to do all they could do. They were screwed.
More or less. I went around talking to each person individually, as I knew I had plenty of time to do it. I came upon an elderly gentleman who was quite well dressed and also quite hard of hearing. I leaned in closely and began to tell him, in a loud voice how sorry I was for the long wait and how we were trying to get people in as fast as we could, but how we didn’t have a room for him just yet, and again how sorry I was. The old gentleman looked up at me, not having heard a word I had said, put his hand to his ear and said, Eh? What’s that you say? You mean to say that it’ll all be alright in a little while? And I could have kissed him right then and there, but instead I said, YES! Yes, sir! That’s EXACTLY what I was saying sir, it’ll be alright, in just a little while! And I felt the oasis of believing this with my whole heart, in the middle of that wretched, crowded place. It rippled out from the old gentleman and myself to the corners of that room. Somehow it all seemed better, in the gift of that instant.
I mutter this part of my motto regularly: silently to myself, out loud, when I am alone, afraid or nervous. I say it to my kids when they ask me hard questions that for the life of me I don’t have any answer for – at least not just yet. It served me well in those months after Mom’s relapse and slow but certain road to recovery, and it works especially well with its counterpoint, as so:
We’re all screwed. More or less. But it’ll be all right in a little while.
I’ve been going through mom’s things slowly, slowly, pacing myself with the weight of the emotion, the waves that hit unexpectedly. This is an experience all of mankind goes through, but I never knew until now, I never knew what it felt like.
I found a few things this weekend, Mom’s eighth grade photo and graduation certificate, carefully folded underneath the drawer paper in her bureau. It looks like she was an excellent student, receiving straight A’s in most subjects and winning an entire year’s tuition through a competitive exam. I also found an unexpected book, Greek Made Easy by George C. Divry, second edition, dated 1946 and carefully signed with mom’s maiden name. Greek, Mommy? Really?
These discoveries are bittersweet. I knew mommy was extremely well read, intelligent, interested in art, culture, history and people, but learning of her scholarship made me picture her as the hardworking earnest student with her life ahead of her, who never went to college, worked as a filing clerk and married, her brilliant intelligence shining through in family life during her periods of wellness, and overshadowed in dark moments when she couldn’t help but succumb to her illness.