Twisted Sister

I betrayed my sister.

Her name was Hope.  She was my big sister, and she was profoundly ill.  Schizophrenia invaded her being, changed her brain chemistry, and forced her into a murky, distorted world. I couldn't deal with it. 

Hope endured a joyless life in dingy mental institutions, for fifty years.

Schizophrenic Nightmare

The thin threads connecting her to reality were forever broken, and she couldn't fit into normal society.  Once a well-groomed, balanced, polished beauty, she was now a disheveled, messy-haired, slumped over, ghost of a woman. She wore big, ill-fitting, dirty sneakers, and oversized, faded clothing. She shuffled her feet and muttered when she walked.  If you looked into her eyes you’d see she wasn’t in the same room with you.  She’d laugh out loud, or scream, and you never knew when it was coming. She was toothless. In her deranged universe, there was no tolerance for dental hygiene, and the idea of managing dentures was unthinkable. So for more than half of her adult life, she lived on a diet of mushy foods and purees.

Visiting Horrors

For years, every few months I’d hook up with our oldest sister, B.J., and we’d plan a trip to the mental hospital, to visit Hope.  But when we discussed “The Visit” over the phone, our breaking hearts, and lack of intestinal fortitude, tested our good intentions.  We’d come down with severe colds, run fevers, or end up swigging Pepto Bismol, as the calendar closed in on "The Visit.” We had to blow it off a lot, and that didn't feel good either.

Every year, we tried to at least show up on Christmas, her birthday, and one random weekend. 

Shaky but determined, we’d get into the car, with B.J. at the wheel, heading to “The Visit.”  As she drove, fear, loathing and despondency sucked the air out of her little Ford Escort.  B.J. would make a wrong turn, or exit the highway too soon, even though she knew where she was going. It tore me to pieces to see her doing it. I understood. She was trying to lose her way – so that maybe we didn’t have to go. Maybe we’d miss the visiting hours.  Maybe this wasn’t real. Because. It. Was. Just. Too. Hard. 

We came bearing gifts – dishing out goods we knew she loved and craved, and turning a blind eye to her lack of judgment. We gave her cartons of Kools and watched as she stuffed the cigarette packs into her bra, one by one, until we got a nurse to store them away for her. We brought potato chips that she shoved into her mouth by the handfuls, nearly choking and gagging.  And then, without teeth, she’d manage to suck down the whole mess. We had her favorite sweets, and she feverishly tried to savor every morsel, pouring M & M’s and whole chunks of hard candy into her mouth. A piece of us died each time we witnessed this routine. We remembered our poised, gracious, lovely sister. Now, looking at this unkempt, wild-eyed woman, whose behavior was grotesque, we wanted to avert our eyes, and sob.   

After annihilating the goodies, she’d often do something inappropriate, like exposing her breasts in the gloomy public visiting room, or wildly lashing out at invisible people, visitors, or other patients. She rarely recognized us, or if she did, she wouldn’t acknowledge our presence. It was impossible to have conversations. She’d mumble, chuckle, and on rare occasions, she might call out the name of a relative who'd passed away years ago. Her mind wasn't in the room with us.  So there were no real connections.  Not a single time.

Our two elderly aunts, both skinny wisps of women, were strong as a team of oxen.  I was grateful.  They’d bake cakes, fry chicken, put it all in a picnic basket, and together, they'd take it to Hope. They showed up with their church hats on and with a certain cheerfulness that my sister B.J and I could never replicate for “The Visit.”  

They’d sit with Hope, putting up with obscenities or violent outbursts.  Incredibly, sometimes they dealt with her body fluids, accidentally or alarmingly projected. They were patient, and they could withstand a lot.  When we talked on the phone, if they mentioned their visit, I ended up feeling like a poor excuse for a sister. 

My aunts were saints. I couldn’t do what they did. On one hand, I felt envy and shame. On the other hand, I knew I just did not have it in me. 

The Good Times 

But there were brighter days.

Before her teenage years, she was normal. She was a part of me. My big sister. My pal.   She was smarter than most- a whiz at word games, she could finish the New York Times crossword puzzle so fast it would make your head spin.  She had an analytical mind, and she always had her head in a book. She spoke a little French, and a bit of Spanish.  To me, she was a wonderful resource for just about everything – The girl was a walking encyclopedia. 

 She kept to herself, but was never really closed off.  If you scratched the surface, you got fun, laughter and joy.    

I loved it when she’d read stories to me, or crack jokes. She could do great impressions of lots of people on television from our era, like Ed Sullivan or Jack Benny.  She was lovely – about 5’8”– with a thick beautiful mane of course black hair.  I loved her hair – it was longer than mine, and I used to watch her comb it into a nice bob.  She had a slender, well-proportioned figure, a beautiful smile, and a warm heart.  

Everything was great at home.  We never ate a pancake that didn't have my mother's signature happy face, which she created out of love, and raisins. My father was a teddy bear who doted on his daughters. We sang, laughed, and prayed together. We didn't have a lot of money, but there was no shortage of love.  When B.J. got married and moved away, I was glad I still had my buddy, Hope.  But during her last year of junior high, she began to unravel.   

Coming Apart

By the time she started high school, her pool of friends was shrinking, and she became more and more withdrawn, and strange. She'd complain about the television - it was speaking to her. We shared a bedroom, and I noticed she didn't get much sleep. She was keeping me awake at night, because she couldn't stop talking - not to me, but to whoever she thought she saw, in the dark. Little by little, her irrational thoughts and behavior started eroding what little mental health she had left. And soon, some of her most bizarre conduct became routine.

We lived in the northern-most part of Manhattan, in a quiet, diverse community called Dyckman. But our sad, delusional Hope was becoming an unintended sideshow in our mundane and peaceful world.

I have vivid memories of the troubling ritual she'd perform with the help of stark white pancake makeup - something you might use for Halloween. She’d cover her ebony face with the stark white powder, leaving her black skin exposed around her eyes and mouth, like a mime. She’d smear pale pink lipstick on her beautiful, full lips. Then she’d put on a dress and strut around the neighborhood, with her white face and light pink lips, startling people.

She'd come back to our building, ringing the doorbells of our closest friends and neighbors. If they didn't let her in, she'd jabber away at them, through the peephole. Sometimes they'd open the door just a crack, to get an eyeful. It was the stuff of neighborhood gossip, and pity. Word of her alarming charade would always get back to our family. My little friends made a point of nervously recounting the details. It hurt, even though they never ridiculed me. There were more public incidents - at school, the corner store - wherever she went. She needed help, and my parents knew it.

They took her to social workers and psychiatrists, and they started putting her “away,” for short periods. She got rest. Therapy. Meds. But she wasn't cured. When she came home, no one in the family could find refuge from her broken mind. The neighbors avoided her, but we loved her. So we lived in a place where tension and schizophrenia hung in the air, except when she was “away.”

With the help of medication and her high IQ, she made it through high school, and she spent a little time in college too. But by then, she was never stable. She’d linger in psychiatric wards, for longer and longer periods of time.

Suicide and Death


She tried to kill herself.

I came home from junior high school, found her in bed, and couldn’t wake her. And then I saw the telltale bottle of pills, lying next to her. Choking on tears, I ran to our neighbor, Mrs. Ranks. I dragged her to our apartment, and showed her. She covered her mouth in horror, and burst into tears. We shook Hope, over and over, but she was still unresponsive.

As Mrs. Ranks called for an ambulance, my mother came through the front door. I cannot imagine her state of mind when she saw what she saw. The ambulance took Hope to a nearby hospital. Thank God, she survived.

Within a few years, my forty-six year old mother lost her battle with asthma, and the pain of her death was unspeakable. Not too many years after, my father passed – it was obvious to us that he couldn’t make it without her. My sister B.J. and I soldiered on. By this time, Hope spent most of her time in psychiatric facilities.


The Awful Secret


One day the mental institution called to tell us that Hope had wreaked havoc with a book of matches. Matches? We were both incredulous. Psychiatric. Patients. Never. Have. Matches.

During those years, patients in psychiatric facilities were allowed to smoke, but cigarettes were lit by orderlies and aides. Matches were contraband.

But she had matches, they said. As a result, a patient was severely burned, and our sister was culpable. She was ordered to spend the rest of her life in mental asylums. 

The match incident, resulting in that patient's death, was a secret I would almost take to my grave, until now.

B.J. and I continued to make “The Visit,” wondering if our sister was criminally insane, and feeling terrible about the woman who died, even though we never knew her identity. The courts were likely involved, but we were not. We just accepted it, and we followed Hope from asylum to asylum, year after year.

Loss

In February, 2000, my big sister, mentor, and best companion, B.J. died – she was only in her fifties. She left grief-stricken, devastated me, standing at the doorstep of insanity, I thought. I could not bear the loss of my B.J. Yet somehow, I did not fall apart. I put one foot in front of the other. I managed, and thrived.

But I couldn’t handle “The Visit” without B.J. So I gave up on Hope.

I may have seen Hope a few times in the seventeen years since B.J’s passing, but only when accompanied by my last surviving aunt. Time passed, and guilt took its toll on me. A concerned friend told me to donate money to mental health charities, in lieu of visiting Hope. I wrote checks to the National Alliance on Mental Illness (NAMI), but continued to beat myself up. Then she said I should find a support group for families affected by mental illness. I didn’t. Hope was weighing heavily on my heart, so I put her in the back of my mind, and buried my feelings.

2017 - The Beginning of the End

Recently, I got a scary phone call.  It was from Rae, a family member.  She and I had been estranged for more than a decade, and had not spoken until that moment.  I braced for the worst.  First, she confirmed a story I’d been hearing for a while. She had been monitoring and visiting Hope, particularly during the period after I’d stopped.  She’d stepped up and taken charge of Hope, in a way that I could not. For that, I will be forever grateful. 

She told me Hope was in the ICU and it didn’t look good.   I went to the hospital.  Hope was surrounded by tubes and monitors, unable to breathe without a ventilator. She was at the end of her life – a life spent in mental asylums, for more than five decades.  Rain was pouring down outside, and tears were spilling from my heart.

Rae was tough, had training and certification in psychology, and was experienced in the mental health field.  After talking to her, I got the impression that I had not been alone in my inability to stick to a rigid visitation schedule, for Hope.  She’d done better than me – she’d done a good job.  And she helped me understand that “The Visit” was not easy, no matter who you were.  She gave me a gift.

May, 2017 - The End

I got that phone call.  Hope was gone.

Rae was Hope’s proxy, but we made arrangements together, taking care of her with dignity but modestly, since she had no friends and few living family members who knew her well. Later, we will memorialize her at a small family gathering. 

For me, there is more reflection than sadness. It is chilling to know I am now the last living offspring of my parents, and that I am sister-less. I also wonder what Hope’s life was like, in her mind.  And I wonder why the guilt I carried for so long, is gone.  I have mourned young Hope my whole life.  My grief for the Hope who lived in a Thorazine-laced, schizophrenic world, is a dichotomy.  I embrace her, but I release her. I morn, yet I am free.  I am enlightened, but bewildered.

The lessons in Hope’s demise are rich. There is already growth and healing in her passing. 

It marks the end of a long journey, for both of us.  A journey we are sharing now, finally, together. After all of the dark, silent years, we are letting our lights shine.