Twisted Sister Postscript & Photo

Today is Hope's birthday.

I am re-posting "Twisted Sister," along with this picture of Hope.   I snapped the photo on Christmas day, at B.J's house. Lots of relatives were there, including Rae.  That's Rae's baby picture on the coffee table in front of Hope. Although she was still living at home, Hope was in and out of psychiatric wards during this time frame. The photo is old and fuzzy, but I think you can still see the beauty I described in my original blog post.

Hope was loved then, and she is loved now. I hope she's enjoying her birthday in Heaven.


Feel free to re-read "Twisted Sister,"  below.

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.

I was a Corporate Stepchild

When she revealed the paltry sum she wanted to pay me, I was insulted.  

 
The Offer

I’d been freelancing with her Manhattan-based company for years. She was a trade show director, and  I was a meeting planner / trade show generalist, running a home-based business in Downtown Brooklyn (DOBRO). 

I enjoyed my freedom, but from my solo cup of coffee in the morning, to shutting down my computer at night, I was in solitary confinement. When I caught myself striking up a conversation with the scrawny kid from Domino's, who just wanted me to fork over the cash so he could deliver the rest of his pizzas, it was time to face facts. I needed workplace socialization.  Water cooler gossip.  Employee bonding. It was time to trade in my bunny slippers for grown up business attire. I needed a J.O.B.

When my client, who I'll call Jane, emailed me with a job offer, I was ecstatic. She knew my capabilities, so I assumed she’d pay me well.   Our quick email exchange went something like this.  

@Me: Great! What’s the salary?  

@Jane: I am prepared to pay you X.

@Me: That seems low.  Is it a typo?

@Jane: No. And it’s my final offer. Take it or leave it.

I thought, really?  So it’s like that?  Who did she think she was dealing with? You don’t low-ball a seasoned professional like me.

So after I accepted, we decided I would start right away.

I should have smelled trouble, but my nostrils were filled with the sweet scent of a regular paycheck and health insurance that would no longer cost me a fortune.  Besides, this was a woman I knew and respected. Her only flaw?  She could pinch a penny tighter than Suze Orman. 

But girlfriend, I had a job.

Summer Fun

Before I knew it, summer arrived.  This was a big deal because Half Day Fridays kicked in.   So at 11:59 a.m. I cleaned up my desk and headed for the front door.  I had to pass Jane's office to get out, and I was surprised to see her buried behind stacks of paper. Before I could scoot past her, she made a point of raising her head to give me a look that said,

“You not leaving now, are you?” 

I felt guilty.  Even though the half day was policy, I'd just come on board, and I didn’t want my boss thinking I was a slacker. Besides, she was still working, and showing no signs of even thinking about closing up shop.  So I bypassed the elevators, hung out in the hallway for a bit, waved goodbye to the droves of people heading out, and came right back to my desk.  So much for getting an early start on the weekend.  Her intimidating look was enough to make me sit there all summer, like a scared little rabbit, never having the guts to leave early a single time, until Labor Day Weekend. Of course, the fact that she happened to be on vacation had nothing to do with it. 

By the time our busiest season rolled around, she knew she had me under control. And I was starting to see things going on around me that were more than perplexing - little things that left me stumped. 

Late Night Mystique

Soon we were deep in preparation for a big show.  I stayed late many nights, sometimes past eleven.  I noticed when my colleagues stayed late, they often ordered takeout from nearby restaurants.  The minute their food was delivered, they’d take a dinner break. I settled for filling up on the Snapple and diet Cokes in the kitchen. Short on extra cash, I ate (like a horse) when I got home.

In the back of my mind, I wondered how my coworkers, including those who were poor as church mice, managed to spring for pricey dinners, night after night.  I smelled a rat.

Another Unsolved Mystery

When I stayed after-hours,  the next day I'd drag in late, looking lifeless.  Par for the course, I thought, after a grueling subway ride followed by very little sleep.  I noticed others who stayed late and lived a million miles away from the office, managed to show up bright and early the next morning. And they were energetic – running back and forth to the copy machine, making numerous phone calls, and staying alert at staff meetings. Some of them lived in the Bronx, Queens, and even New Jersey, enduring commutes far longer than my trek to DOBRO.  How'd they do it?

Hotel Jam

As always, the trade show staff was booked at a premier Times Square hotel for the show. I looked forward to it.  We'd all get suites, fine amenities, and impeccable service.  But one day before we all checked in, my boss feared the premier abode might run short of complimentary rooms for us. God forbid she should spend an extra coin (of not her  money, I might add), to make sure we were all comfortable.  Her quick, low-cost fix?  Kick someone out. Put them in a hotel guaranteed not to cost one red cent. 

Being the newbie, I knew I'd be the one to take the hit.  Jane cancelled my reservation, swearing  she'd find "a nice alternative" for me.  So now my suitcase was packed but my housing was up in the air.  One. Day. Before. Check-in.   

To say I was a little anxious would be an understatement.  I was starting to get a rash. 

Let me explain.  This was a show involving 40,000 people, requiring a 12-15 day hotel stay for anyone working on the event, no matter how close you lived to the venue.  It took a small army of people, exerting blood, sweat and tears, to run this puppy.  And every night when the show closed, you’d be lucky if they didn’t carry you out on a stretcher. Or worst case scenario, they’d bring you out feet first.  Staying home, having to deal with your regular life over the show dates, was out of the question. If you had a husband, there could be loss of life – his.  We needed the nicest hotel rooms possible, so we could live in comfort and focus on the tasks at hand, until the show closed.  

When I did get assigned, the hotel looked fine on the outside, but my room was a different story. The entranceway was so narrow I had to turn my suitcase sideways to get it in. Not an easy feat, since it was a huge clunker with wheels that didn't rotate easily, let alone spin. The room had a doorless closet with three hangers, and a small dresser, with fake drawers, although for several minutes, I tried to yank one of them open. The TV didn't work, and there was an audible leak in the bathroom.  It was also the tiniest hotel room I'd ever laid eyes on. Could I last fifteen days in this dump?  Nope. Not a chance.

I thought about my colleagues, getting settled into their suites, luxuriating in fluffy hotel bathrobes, sipping wine, and enjoying their fruit baskets.  Furious, I called my boss.  My voice was shaking, for fear of being fired, but my tone was loud, deliberate, and serious, when I said the following.

"This so-called hotel room you gave me is unacceptable.  I'm checking out and heading home to Brooklyn." 

All of a sudden, she changed her tune.

Jane quickly contacted our company's hotel lady, who hit my cell phone right away. Begging me to lower my standards and stay put for  just one night, she promised to get me a spectacular room for the duration of my stay.  Too exhausted to move or argue, I settled in. 

The next evening I stopped by the front desk to pick up the key to my new room.  An apologetic young woman told me  that last night, they'd placed me in the only room in the hotel that hadn't been renovated. Hmm. Was it just bad luck, or had Jane set it up that way?  Paranoia was starting to set in.  I snatched the key, and as I got off the elevator and realized my new room was on the concierge level, I still had low expectations.  I put the key in the door, and presto!  Someone must have waved a magic wand for me. I was standing in a huge corner room with a wraparound picture window, and a view of Times Square. The hotel sent a nice bottle of wine and chocolate covered strawberries to boot.  The room was brand spanking new, with a working TV, and fresh linens that had been turned down with chocolate placed on the pillow. And of course, there was a fluffy bathrobe hanging in the huge closet.  I breathed a sigh of relief.   I could now get through the show, without tears, or claustrophobia.

Petty Receipts

The show closed, and everybody went home to collapse and recuperate.  When we came back to the office, it was time to wrap up the financials. Being one of the poor souls without a company credit card, I submitted my expenses immediately, looking to get my money back, like, yesterday.

The minute my expense report hit her inbox, Jane called me into her office. 

When I walked in, the woman had fished out one of my cash register receipts, and she was waving it in front of me. The total amount - twenty bucks. With a straight face, she questioned me, like I was a suspect at a police station. I remember thinking - Why should I have to explain what was spelled out on the receipt?  Chicken fried rice, Szechuan chicken and two egg rolls. Then she let me know she’d done a bit of detective work.  The receipt was dated the same day as the show’s opening night party, where she’d spotted me and my new six foot-five boyfriend eating hors d’oeuvres. This confirmed my suspicion that she'd been stalking  staring at us that night.  She said we should have filled up at the party, rather than spending money on Chinese takeout afterwards.  WTF?

All of this hoopla over twenty dollars? Okay. So was this jealousy, extreme cheapness, or both?  I doubt if she nailed other staff who bought dinner rather than sucking down a boat load of franks in a blanket at the party.  But I didn't push back.  If deducting twenty clams from my reimbursement check made her day, so be it. 

Pink Slips   

Time went on, and we had another summer of Half Day Fridays.  This time, I took advantage of it.  Summer turned to fall, and one day I came back from lunch to find Jane throwing her belongings into cardboard boxes.  She’d been fired. I was stunned, although I knew we had a new president who was cleaning house.  So just like that, my boss gone.

I felt sorry for her.  All in all, she hadn’t been so bad.  Be that as it may, I noticed I was smiling a lot more, although heads were rolling faster than I could count them.

Enter my new boss. Green. Harmless. Scared.  Not a problem (yet).  She was just one of the new hires who were happily filling empty slots left by folks who'd been chopped.  Smart cookie that he was, our new president hired a counselor, one of those touchy-feely types,  to address the concerns of employees who had whiplash from all the changes.  Someone we could talk to if we had any fears or concerns. And of course, anything we said to her would be strictly confidential.

Happy Days

When I learned the touchy-feely lady was recording our “private” conversations and bringing the goods back to the president, I had a plan. I set up an appointment with her.   I drew up a proposal for a salary increase.  I outlined my responsibilities and found data on salaries for people doing the same job. I even lied and said I knew their were people in the company doing less work that me, for much more money.   The touchy-feely lady listened, claimed I had a good case, and suggested I take it to our new commander in chief. Meanwhile, I knew she’d talk to the president before I did. 

He called me in for a meeting.  He pushed some papers across his desk, telling me to take a look.  I couldn't believe my eyes.  He'd signed off on a huge salary increase, for me. I was speechless.  Then I thought about it.  My pay was probably lower than the suggested starting salary for managers in the company who were on my level.  Can you spell lawsuit?  Still, this man was genuine. He knew what my job entailed, and he saw to it that I was paid accordingly.

With the swift motion of his pen, he made my life better, and for that, I will be forever grateful.

Secrets Revealed

Time flew, and the busy season rolled around again.  The late nights were upon us, and people were ordering food.  Bolstered by my new salary, I looked at a couple of menus and put my order in.  When the food was delivered, I whipped out my money.  Jaw’s dropped.   

They asked, ‘What are you doing?” 

 I said,  “Paying?”   

And that’s when I learned if you worked past seven o-clock, the company paid for your dinner.   So all of those nights, when I was filling up on diet Cokes, I could have had dinner? Why didn't Jane tell me?  My opinion of her was starting to change.  

One snowy night, now that I was in charge of managing staff housing with the hotel lady,  I was asked to find rooms for people who were staying late, including me.  Huh?  That’s when I discovered staff could stay overnight in nearby hotel rooms, gratis, of course, so that when they worked late, particularly during bad weather, it wouldn’t be such a hardship. Many came in with suitcases in the morning, knowing they would not be returning home that night.  Here was another fringe benefit she'd shut me out of.  The next time I worked late, I stayed in a lovely hotel, just steps away from the office.  In the morning, I arrived just as perky as everyone else. 

Then one evening I was headed out late, and a colleague asked, 

“How are you getting home?” 

Before I could respond, she handed me a form and told me to call the number at the top.  She explained that the company had a car service employees could use to get home when they worked late.  Holy Moly! While I was in the subway, dealing with Pizza Rat and assorted weirdos, my coworkers were being safely chauffeured home  in black cars.  Jane never breathed a word about it.  

Soon, I was given another big raise.  Goes to show you just how much I was underpaid.  And they gave me a corporate credit card.

The raises were life-changing.  The credit card actually helped me be more productive, because it took away the stress of always having to reach into my pocket for certain show expenses.

I was a new person, embarking on a new and improved life.