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Tuesday, January 19, 2016

Having Nothing, Losing Everything: Life Under the Full-Throttle Faucet of Crap

I think this work of art is by Nicola Samori 
I've been wanting to write about stuff that's been going on in my life since 2011. In future posts, I hope to address:

coping mechanisms

what others have done that has helped

what others have done that has hurt

This post is a sketchy preliminary attempt to outline the events that I call the "full-throttle faucet of crap." This post isn't for everybody. I'm not trying for beautiful writing. I discuss dark topics.

Before 2011, I had been alone and poor for a long time. I've written a lot about that in other pieces.

In spite of the poverty and isolation, I had strong compensatory mechanisms. My own determination, self-discipline, and imagination provided me with strength, security, stability, and, yes, a fair measure of modest joy.

I had hope. Someday I was going to find someone who would love me. I was going to build a family. Someday I'd land the right, fulltime job.

Summer, 2011, I went to Poland, made new friends, and felt new inspiration for work.

I returned to America, and my computer crashed. A computer crash sounds minor, but horror movies don't open with loud screams and buckets 'o blood. They begin with a smiling family driving up to their new home. Only a vague shadow in an upstairs window portends future agonies.

I wanted to apply for a grant. I had promised good people in Poland that I would do this. Suddenly I couldn't even type, and I lost important files.

I needed to spend as little money as possible, and I needed advice. I am computer dependent and computer illiterate. After much scrambling, I bought a new computer. I got it in my apartment, and the "on" switch didn't work. Huh? I phoned Office Depot, and was told they would not replace it. I was astounded. A wrestling match began. Working out such poor customer service – no big deal, right?

But then my apartment manager, normally a cordial lady, entered my apartment and said, "You have to leave right now. You do not have time to pack anything. Get out." Her words were italicized by the surly private security standing beside her. Behind their adamant bodies paraded a mini-Exodus of my neighbors. They all looked so harried their images nearly blurred; I could barely recognize them.

I was wearing shorts and a man's shirt. I threw on sneakers. I left my family photos, my thumb drives, everything I owned.

The Passaic River had entered the apartment complex through the floorboards. I lived upstairs; I thought I would be able to sit out Hurricane Irene.

I walked past the Paterson Falls. I let loose a spontaneous oath so obscene I had never previously spoken it aloud. I had never seen the Falls like that. More Atlantic Ocean than swollen river. Police officers barked clipped, no-backtalk orders, crowds milled, drivers ricocheted off barriers of flooding. I walked through night streets disrupted by water and fear to my workplace, some miles away. I slept on an office floor. Later Charlene, a coworker, took me in. I sat around her condo for days, derailed. I had no idea when I'd be able to return, or what I'd find when I got home. Thank you God, nothing of mine was touched by water or looters. Those on the floors below me lost everything.

Every now and then I'd check email to see if family or friends were asking about me. No. I asked myself if I would be mindful enough to write someone if I saw on the news that their town had all but washed away. Anyway. It's okay. I'm alone. I can deal with it. Someday I will meet someone and it will all be okay.

The next thing was the sexual assault. It's funny; when a woman says "I was sexually assaulted" we have all been trained to regard that as worthy of attention. "My computer crashed" – those words don't get you the same hugs, hysteria, and government funding that sexual assault will. Here's the truth – the computer crash was worse for me than the sexual assault.  

WT, a nice man I know, alerted me that I'd be crossing paths with a scholar with whom he, WT, had worked. WT said, "Introduce yourself. Mention me. Perhaps he can help your career."

I did introduce myself to his colleague. As we spoke, the scholar moved closer and closer to me. He spoke in a more and more intimate, and increasingly disgusting way. I thought, "Wow, he has an unusual interpersonal style." It really never occurred to me to put two and two together till he actually jumped on top of me and his saliva was all over my face as I twisted and turned, dodging his prehensile kiss. A fortuitously passing woman jumped in and pulled. Me pushing and her pulling detached him. The woman shouted at me to run. I did.

I had to shower and check and recheck the lock on my door. I had to go a couple of days of not leaving my apartment and certainly not talking to men. Guys, forgive me. I know most of you are okay, and I know some of you would have punched this scholar had you been on the scene.

I contacted an academic friend. He told me that this particular scholar does this habitually. Said that it had ruined his marriage and damaged his career. Damaged his career? His resume included recent publications, invitations, funding, honors and awards.

In spite of everything, I want to believe in the nobility of academia. The assault rattled me.

Next, the broken arm. Between the break and the ice, I had to stay in my apartment for what felt like forever, but was really just a few months. Good-hearted people, including my boss, brought me food. A coworker, afraid to enter my neighborhood, mailed me food, which someone, possibly a postal worker, stole. Much of my mail, and my neighbors' mail, is stolen. We've petitioned our congressman. Nothing changes.

As with the flood, I scanned email and phone to see if anyone to whom I am related would contact me. I had informed them of the broken arm, and that I couldn't so much as open a can or tie my shoes. I received no reply. Later, one of them said to me, "We knew you were sick and in need. We decided that you don't deserve our help."

When I was still typing with one finger, my book Save Send Delete was published. I was excited.  

The publisher, though, did nothing to promote Save Send Delete. It was all on me. Me with a broken arm, no job, no income, and no contacts.

I paid a publicist a lot of money (for me.) She did nothing except ask for more money.

Professionals get it that publication is a punishing game. Most rejections are exquisitely courteous and classy. "I regret to inform you that your work is not right for me at this time but please do not take this as any reflection on its value. Someone else may feel differently. Good luck!" That's a prototypical rejection.

I bought dozens of copies of my own book and mailed them to Catholic authors and publications, begging for a review. One book reviewer, from the National Catholic Reporter, sent me a condescending, insulting rejection. He had never seen my book. I stared at the computer screen for about ten minutes after receiving his slap-in-the-face email. The worst part is that this happened with a few Catholic gatekeepers, all men, all part of powerful cliques, who went out of their way to talk to me the way a nobleman talks to a peasant.

Without reviews or promotion, Save Send Delete has had almost no sales. But I really didn't have time to devote to that heartbreak.

Here's a funny story about the cancer.

I am a bit obsessive-compulsive. One of my quirks: I buy a new Mary Engelbreit desk calendar every year the day after Christmas, when they go on sale. Right before I buy it, I flip through, to make sure that every date is there. I know calendars conventionally include every date. I just make sure.

December, 2011, I did something different. I bought an Anne Taintor desk calendar, rather than a Mary Engelbreit desk calendar. And, really to break from my routine, I forced myself NOT to check if all the dates were there.

The week that I was diagnosed with cancer was missing from the Anne Taintor calendar. That page with that date was simply not in the book. All subsequent dates were missing, until the week the radiation ended. Then the calendar began again. True fact.  

My first diagnosis gave me very little chance of survival beyond a year. I looked at gray-haired  people, realizing my hair would never go gray. I stood in a grubby bus kiosk on Hamburg Turnpike, facing east, waiting for a bus that comes rarely, goes slowly, takes a circuitous route and is crowded with quarrelsome and malodorous people. I watched light from the sun setting behind me shimmer onto oncoming traffic and glint off of chrome. I wanted to grab others waiting with me at the kiosk and shout at them, "Do you realize how magic every detail of existence is?"

I made out my will. I realized that I would never find love. My writing would never be published in any significant way.

For years I had been lugging around a library of books about Poland and Eastern Europe. Three very large and heavy cardboard boxes held photocopies of hundreds of scholarly articles.

I would die soon, and Polonia – the international community of Polish people – had shown zero interest in my work, for which I had sacrificed everything. I would never find a teaching job where I could apply what I had learned. My advisor in grad school had been correct. "What you are working on is controversial. It will cause you nothing but trouble. You'll never publish and you'll never find a job. Write about Africa. You lived in Africa. That will get you a job. Forget about Poland." If only I had listened. I gave away my mini library of Polish books; many went to Kim W, a young artist and writer. Those three cardboard boxes full of articles that I had lugged and cherished even when I was homeless: I dumped them into a paper recycling bin.

The soundtrack of these disposals: the thud of clods on a coffin. You are worthless. Your work is worthless. All those years of sacrifice are worthless. All those hours in the library, at the computer, researching, seeking elusive publication. You are already dead, nobody cares, and you failed.

Afterwards, as I lay in the hospital bed, the surgeon said, "Who told you that you have cancer?" He said it was small, and not the kind it had first been diagnosed as. The lab had made a mistake. He had removed much more than he actually needed to. He had gotten it all, and my chances of long term survival were good, as long as I avoided route 80 at rush hour, ha ha ha.

Next: Sandy. If you live in New York or New Jersey you don't even have to say "Hurricane Sandy." Just "Sandy" is fine. We were without electricity for two weeks. It was dark and cold and our water ran brown. My stove is electric. No hot food. No refrigerator – no cold food. No heat. No hot bath or shower. I was still feeling the aftereffects of radiation. Shivering alone in a dark apartment for two weeks, fighting nausea and fatigue. No computer and not enough light to read. My workplace shut down.

Unsolicited advice: MP, a Facebook friend, told me to make myself some hot tea. I wanted to smack her. Did she want me to set my furniture alight?

Unsolicited advice: "Leave your dark and cold apartment. Go stay with a friend." I was surrounded by people whose Volkswagen hoods were festooned with large oak trees, by people who couldn't flush their toilets, by people with two feet of water in their living rooms, by streets bridged by live wires, by long lines for gasoline. In any case I didn't own a car.  

There was a crack in the loneliness. Two real, live people entered my life – not just internet friends, but flesh and blood. They told me that they loved me. I opened up, hoped, and trusted.

I had been a loooong time.

Ted said "I love you." He said "I'll never leave you."

I felt as if he and I were part of one organism. I felt as if we had a bond that transcended time. Love? I fall in love once a week; more if I go to the movies. Trust is huge. I trusted him. It was as if my soul transformed from a coffin-sized Manhattan studio apartment into a sunshot prairie, strewn with flowers.

When I was getting to feel connected, and cozy, and hopeful, after I dismantled my mechanisms for surviving, and finding joy in, my alone life, they both went their ways. 

Her? We'd go to lunch, and she'd spend the time looking at her cell phone. I'd try to talk to her about him – I desperately needed to talk about him – and she'd say "You can talk to me about anything but him." Eventually she told me that she and her husband had talked it over and they didn't want to be "enmeshed" with me. "Enmeshed." She and her husband. Wow.

For my own heart's and sanity's sake, I talked about him, as anonymously as I could, on Facebook.

I said that I had loved someone who became a different person. I said how hard it was to hear him tell me, virtually in every communication, every look, every gesture, that he was in pain, and close to death. To jump in and try to save. And to be told, "Your love is not enough. I'm still in pain. I'm still on the threshold of death."

I received a private message. "Please read Stop Walking on Eggshells: Taking Your Life Back When Someone You Care About Has Borderline Personality Disorder."

Reading that book, I stopped highlighting because I was highlighting almost every sentence on every page.

I crashed through floors of a structure that was falling apart.

First I fell through the floor when I realized that he didn't love me anymore. Then I fell through the floor of maybe he never loved me. Then I fell through the floor of maybe it was all a manifestation of BPD.

It was a physical experience each time. Not just mental. Not just emotional. I felt new physical pain. My body changed. What I wanted to eat changed. How I slept changed.

The last floor: falling out of love with him. That was worse than realizing that he no longer loved me. It was a biochemical change. It was an amputation, a disease. I wouldn't wish it on anyone.

Next. Being diagnosed with a chronic illness, one that is quite vanilla if cared for, but that kills if not.

Next. Obamacare. I have not told *anyone* about it in detail, for several reasons. To tell is to relive. I don't want to relive any of these moments.

These moments: I walk out of the clinic I must go to. I am in a distant, unfamiliar, high-crime neighborhood. I am aghast that it takes them hours and hours over the course of months to do what it would take a private doctor a few hours in a few days to accomplish. I am so rattled I vomit uncontrollably in a grotty parking garage.

These moments: I have been turned down for Obamacare. I know the turndown is a clerical error. I phone the people in charge and tell them, and they acknowledge that it's a clerical error, but they can do nothing about it – "Fixing your problem is above my paygrade. I just do what they tell me and push the papers along." This goes on for months, during which I qualify for no health care whatsoever, including the follow up cancer care I had been receiving, and partially paying for, before the onset of Obamacare.

These moments: I phone several doctors, specialists, and clinics who had been willing to see me before Obamacare, and who accepted a reduced rate from me out of pocket. "No more. Nothing for you. You now have Obamacare. They pay for everything."

These moments: going to bed every night crying, waking up every morning terrified, because you have tried everything you can to get the cancer follow-up and chronic health care maintenance you need, and nothing has worked, and you feel your previous good health slipping away – you see it in the mirror as symptom by symptom eats away at you – and you can do nothing about it.

These moments: anyone who goes public with a complaint about Obamacare is chewed up and spat out by politicians and the media. And liberal friends unfriend you on Facebook.

The next event. I live in public housing. Someone received a bucketload of graft. Though my apartment had been in perfect working order, it had to be "renovated" – in order to justify lots of tax dollars flowing to the "renovators."

Workmen constructed a staircase from the street to my window. There have been three murders right outside my door in the past five years. Anyone could walk up those steps and enter my apartment. Workmen built a hut outside my window. They peered in at me and made nasty comments in Spanish. They were out there for months. My refrigerator, which worked just fine, my toilet, ditto, my stove, ditto, my cupboards, ditto, my windows, ditto, were all ripped out and replaced with "improvements." The new, improved cupboards are so poorly made they splinter into my fingertips. The new faucet trickles. The new windows open a fraction of the previous ones. For six months everything in my apartment was coated with the fine dust of ground bricks. It's been two years, and my apartment still smells toxic.

And then. Two of my siblings had previously died young. I sat beside my brother Mike's hospital bed. Phil was killed.

I felt for my sister the degree, although not the kind, of passion you feel for someone with whom you are in love. My sister's diagnosis suggested she'd have eighteen months to live; she died a bit before the two year mark. Three different health care facilities. Times I'd walk out of the room sure I'd never see her alive again, but did. Begging God to take me not her. God, audibly, saying, "No."

Anyone who has taken care of a loved one knows. She was, unquestionably, the superior one. Prettier, smarter, etc-ier. And taller. Two inches taller than I.

The day I realized I was taller than she. I don't know how that happened. I don't know how her illness made her shorter. Just one more detail to cry about.

I was rubbing her feet when she died.

No, our relationship was not perfect, but in spite of everything – and that "everything" was vast – she and I were connected. When I was in my early teens and she left home to dorm at school, I would think something, and write it down in a letter, and receive a letter from her that crossed mine in the mail, and she had been thinking the exact same thing at the same time. We would report these thoughts to each other using the same vocabulary.  

I miss her ravenously. I know "ravenous" is not a word you are supposed to use to talk about missing someone. I say, out loud, maybe three times a week – it just pops out of my mouth – "Antoinette, come back." I know that's wrong. Knowing that it is wrong does not stop me from saying it.

A month after she died I was atypically invited to a family event, one for which I should have a spectacular gift. Lacking funds, I put together a collection of family memorabilia. My siblings and parents gone, no kids of my own, I wanted to pass on stories, people, rhythms, scents.

Antoinette and I did that for each other. In any given conversation, we might harken back to Grandma, whom I never met, or our Polish grandmother, whom I did, or this or that uncle or aunt, and tell a snippet of a tale about them.

So, I gathered all these artefacts together and gave them as a gift to the recipient.

And I got an email from two of her allies. The first: a WASPy matriarch from a comfortable white suburb, telling me that giving this girl a collection of family memorabilia was a horrible thing to do. Why hadn't I spent a lot of money on a gift, as she had spent on hers?

And then I got an email from a sex worker. You've hit some kind of a bottom when a sex worker upbraids your gift as distasteful. "Hit some kind of a bottom" is more of a pun than I was shooting for.

I realized … all those stories I heard from my mother about the Old Country. Me, Antoinette, Mike, Daddy … Our dogs, Artie, Benjie, Lady and Tramp. The night Phil was killed. Antoinette had had a premonition. When I tried to retell her story, I always got the details wrong, and I had to check back with her to tell it right. Now I no longer could. The story would continue to be told, but in disintegrating format. Still standing, like a dead tree, never to live in anyone else's memory, never to be talked about, eventually to topple and splinter. My great, great grandmother – the stories I knew about her, and wanted to pass on … disappearing.

I felt a sharp pain in my chest. I had to struggle for breath. That pain remained, and that struggle for breath continued, for three months. One day in late summer I realized it had finally gone, and I could breathe freely again. 

I wanted to do so much more when I sat down to write this. I wanted to write about things that people have done that have been helpful to me during this challenging time. I wanted to write about my own coping mechanisms. This has gotten to be very long. Maybe in future posts. 

4 comments:

  1. Wow, that is so sad a story, Danusha, I want to reach across the states and hug you. Even though we have been friends long enough that I remember all of these events, told as one story, what you have had to endure, staggers me. You are brave and I am hoping the little lights we send your way, the call I made, the encouragement, the reading of your post, when I haven't read anything else in FB, all of this is my empathy, my love, my little light into your darkness, not enough, I know, but I hope it is warm and can touch your heart when you think about it, and make life not seem so "doomed." A word you have used, and it is a powerful and abject emotion that accompanies it.
    God love you, Danusha.
    For what it is worth, I read every word, heard you, heard the pain, the justified pain, and am sending a prayer your way, love your way and I am thinking about you! You didn't deserve any of that poor health and certainly not that bad treatment.
    Love, Rusty

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  2. SANDY LEE hi, I can't post your message because it contains your email address. I don't want you to receive spam email on account of anything you post here.

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  3. Words fail me. All I can say is Thank You for your love and strong spirit, for your openness, courage and honesty. -JD

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