Handicap Parking & Cheaters

AUGUST 28, 2020

My dad was a seasoned worrier.  My mom, who had a physical handicap, was less of an outward worrier.  Her big thing was “the lay of the land”.  As in she liked to check out any new place with a drive by in the days before, to get the lay of the land. Were there steps? And if so, was there a handrail?

Years before the ADA was formed, these were real issues for people with a physical handicap. When you still said handicapped people.  Actually, once my mom asked me if I was upset because other kids made fun of her or called her crippled? I was in first grade at the time and can remember a sinking feeling at hearing her use that word.  No mommy, I said, no one has ever said anything bad about you.  And from that moment on, my ear was tuned to listen for CRIPPLE. 

Now, every other car in my neighborhood carelessly displays their blue handicapped parking pass.  I hate these cheaters.  They have no idea what it is like to be truly disabled.  To have such pain and physical difficulties walking that you can barely make it from the car to the trunk. 

I’ve had some fights with entitlers who take handicap parking spots, and they can walk.  Oh, you have a heart condition so you need to park near the mall entrance to shop? Don’t you see the irony in this? Let me take your picture for my wall of shame.  SHAME on you. 

Handicap Parking Cheaters, I’ve seen you walk your dog.  I’ve seen you on the dance floor.  LIAR LIAR LIARS.  I will call you out as the wild woman in me emerges.  I see my mom, and her physical struggles, getting out of the car, holding on to the car, making her way to her trunk, using the lift to get her motorized cart out. Using the lift to guide and attach the seat.  And then trying to find a safe path to drive into the mall.  Or the grocery store.  Before ADA and safe paths.  Before ADA and the demand for equal experience in public spaces for people with disabilities.

My mom was lovely.  Not wild. My wild anger it is always just below the surface. 

In 2005, I caught my ex-husband cheating. Lying.  I was devastated.  Crushed.  That summer when my kids went away to camp, and I realized that his begging to make things right were more lies, I filed for divorce.  He was not living at home, he was not sending money to help take care of me and the kids.  He was living with his smug lying sex whore.  They were perfect for one another. Two worthless pieces of shit liars. 

I was so broken, so scared, so surprised.  The ground was not level, there was nothing I could count on.  And everything in my house was a chorus of lies.  Our dinner dishes, lovingly purchased. Lies.  I threw them outside, watched as they shattered! And I felt a tiny bit of relief.  Yes, makes sense, they should be broken like us.  Next came the bowls.  The cups. The glasses.  Lies.  All of them. Lies.  I threw and threw.  Smashed.  Chatchkies; beautiful blown glass, ceramics, collected over the years of our marriage, collected in LOVE.  During our travels. Souvenirs. LIES.  How could I ever look at them again? CRASH! SMASH! Oh, I was feeling way better.  A cleansing. Of him and of all the lies living on my shelves. 

His lying clothes, still hanging in my closet.  I take my carpet shears and slash the backs of his shirts.  Worthless liar! This is how you stabbed your family in the back.  This is me stabbing you in the back. WILD IN MY RAGE, MY HURT, MY TEARS and mostly my FEAR.  HOW COULD HE DO THIS TO US? More crashing, more trashing. It felt good to clear out the evidence of my shattered marriage. 

And then weeks later, he finally slinks back, to empty his half of the closet.  And after packing up, he changes his shirt, and I hold my breath.  He doesn’t even notice the slashes in the back.  And I think good, you lying piece of shit - you deserve to wear slashed shirts.  A sign of how you slashed your family.  I should have cut your pockets.  To represent your bounced checks.  How you walked out of our lives and never once looked back or sent financial support to the kids. 

I find the box of Christmas ornaments.  Chanukah décor.  I keep all the Chanukah memories for my kids.  And I pack all the Christmas shit in his box.  Except anything having to do with us.  Those I throw out.  By the end of the day I am broken.  I want to climb into the garbage can with all the shattered glass. I am God’s garbage.  That one thought runs through my head over and over.  Why did he fight so hard to save me, only to throw me out in the end?  And if the man I gave beautiful children to, and a beautiful life to, didn’t want me, then no one would ever want me.  I was shattered.

I was out of control and wished I hadn’t sent the kids to camp.  Home alone.  Really alone.  The alonest.  I just wanted to die.  WHEN did it all happen? And how did I miss every sign? When did he turn into such a liar? I know that men leave their wives all the time, but how could a father leave his children?  HE FUCKED US ALL.  We will never be okay. I started going wild again, pacing through the house, looking for things to break.  I understand how cutters cut themselves.  I felt relief with every crash. 

Laying in the dark, on my closet floor, alone, terrified and confused, all I could do was sob. And wait and hope for morning to come. 

 The next day, Sunday, I head to whole foods.  There I run into a man I knew in high school.  He says the magic words, “I used to have such a crush on you in High School” and then asks if I remember him.  He was also going through a divorce. We slowly began a love affair. Maybe I’m not garbage after all. I learn about love and sex and how being whole has nothing to do with body parts.  The wild woman in me has become wild in the best way possible, wild in love. 

High School

MAY 23, 2020

I had to get high every day in order to cope with high school and my parents. I smoked a lot of weed to keep my inner wild child from losing her mind.

All I really wanted was to be seen and supported. My parents could not relate to me; I questioned authority, I didn’t go with the flow, I was a rebel, I ran barefoot in tight bell bottoms and a halter top, I was a wild teenager who defied them with my “fresh mouth”.  I started most fights at the dinner table, the worst possible time of day for winning. It was my first time being a teenage daughter and I didn’t have a single “how to get along with your parents” book on my shelves. 

Every day at high school felt like a personal insult to my intelligence.   I still remember a spelling test given by Mr. Ash. “Spell Tentative…Tentative, the word that comes after Nine-tative.” And then he laughed too hard at his own bad joke. I’d been reading and writing since I was four years old. This was a baby class. Insulting. And I felt suddenly trapped.  My heart would race and I had to escape.

Taking the bathroom hall-pass I left the classroom and headed straight to the back of the school yard towards my escape route.  My usual way out was quickly climbing the full height chain-link fence. As my bell bottoms hit the ground to freedom, I heard the whoop-whoop of a siren and our school Narcs pulled alongside me.  I was busted!

They told me to get in the back of their narc car and they had to take me back into school and call my parents. If WTF had existed I would have said it to them—WTF? Call my parents? I’m a grown 16-year-old!

Instead, every thought I had was geared towards avoiding getting into that car. So, I did what every wild teenager does when she is trapped…lies. First, I burst into tears. Next, I begged them, “Please don’t make me get in the car. It’s too embarrassing. I promise I will meet you at the front of the school.  You can even take my purse. Please I begged, please don’t make me ride in the car. I promise I will meet you there”.

It worked!  They did not take my purse, but instead they followed slowly alongside me as I walked head down, long hair swinging over as much of my face as possible; they still hadn’t taken my name.  I walked my fastest down Canfield Ave towards the school.  Satisfied that I was keeping my promise, they sped up a bit and drove ahead. As soon as I saw their car turn right I turned around and ran my ass off the four blocks home.

My parents were at work so the house was empty. I went inside, locked all doors. I closed all the blinds. No lights on. I laid on my bed breathing hard and listening to my crazy racing heart. But I didn’t get caught and I didn’t get busted. Being wild paid off.

I rarely was able to stay in school for more than a week at a time. I’d ditch whole days, and then some days I’d ditch only certain classes.  Writing my own elaborate absence notes and forging my mother’s signature got years of my absences excused.

Until my excuses got too elaborate for my own good. Most of my excuses were routine. Cramps. A cold. Or a 3-day fever. Migraine headaches could go 4 days. But then my last forged note said I was absent due to strep throat and mono. I had to come up with something big to cover 14+ days out of school.

When she read my absence excuse note, the attendance office lady said I had to get a doctor’s note to bring in to clear me from strep/mono. They were such a pain in the ass. Where was I supposed to get a doctor’s note? We belonged to Kaiser. You couldn’t even get a doctor let alone a note. And even if I had a great Kaiser doctor who loved note writing, what I didn’t have was strep throat or mono.

By later that week I was called out of class into the girl’s VP office. This time I was both trapped and busted! As I walked in I could see MY mother-bear sitting there with a large stack of absence notes stapled to attendance records and she was opening them one by one, writing FORGED in green marker on every note that I had forged.

But much to the credit of MY mother bear, as she was opening these notes and writing forged across them, she was also scolding the girls VP saying “if my daughter felt engaged by her teachers, she wouldn’t feel the need to leave school all the time.” Grrrrrrr!  My normally calm and kind mama bear was pissed and she was taking it out on the school. I couldn’t believe my ears!

That jab resulted in them hatching a plan for me to go on work experience and from that time on I had a 4/4 schedule. Meaning I was still trapped at school for four hours a day, and then I got work credit and could go to my job for four hours a day. I loved working; I worked at a clothing store and the creative independent animal in me was so nurtured working there. Even with the 4/4 schedule, I still had to get loaded every single day of my life to cope with the insufferable atmosphere of high school. And to take the edge off the constant tension in my household. 

Every day on my walk to school, I smoked some pot. Except on days when our first period elective was bowling, or ice skating.  Then it was pot and Quaaludes. It was the only way to take the edge off my rage and to survive. Otherwise the wild animal in me might have done some irreversible damage. 

It was horrible not to feel seen by most of the adults in my life.  I felt invisible to my parents, and to my teachers.  Since graduation was approaching, and while I had this Invisible super power, I decided to get my records out of the attendance office. I felt the school didn’t need this evidence against me. I felt just the opposite, that I should have it as evidence against THEM.

I was so brazen, I just walked into the office one morning as if I worked there, and pulled my brown records file out of the file drawers, took all my notes, slips and report cards, and dumped the entire contents into my purse. Put my empty file back. Shut the drawer. And then simply walked out. I still have these notes in a Robinson’s gift box. Elegantly stored for 45 years.

They were part of a lecture series when my kids started high school.  Known as “If you don’t want to go to school, you need to tell me and I’ll call the office and have you excused”. The lecture began, “You two are not to become forgers. And I will be a moderately cool mom but if you take advantage of my absence excuse policy, I will revoke my offer”. This box of forged notes is somehow an important part of my childhood; they represented a pivotal moment, when my mama-bear taught me that you do not shame your child in public, you protect and support them.

And then maybe you punish them in private at home. I don’t really remember getting punished, I’m just wondering if my mom kept the whole thing quiet from my dad. The same way she left our shopping bags in her trunk, as my occasional ally. Maybe she was starting to see me for the very first time. 

In June of 1975 I managed to graduate high school with my class despite missing more than a third of all the school days for three years. Our class was so large that graduation was held at UCLA’s Pauley Pavilion. In that tunnel under Pauley Pavilion, while lining up with my classmates, I took a Quaalude along with hits from a joint that was being passed around. The atmosphere was excitement and also melancholy for all the goodbyes being said between friends. 

I was indifferent to graduating. I was emotionally indifferent to almost everything - it was the only way for me to cope.  I have a handful of photos from that day.  Me wearing a cheesy powder blue cap and gown and goofing outside of my parent’s house, with some of my friends.

Later that night, I experienced a very distinct physical feeling. I felt physically lighter, and I could breathe. My lungs relaxed.  My stomach unclenched.  The burden that I had carried for those three years of high school were lifted off of my shoulders. I think I felt HOPE for the first time in three years. Something huge had shifted and I was free.

I didn’t know it then, but that day in the tunnel was the last day I ever did drugs. I just never felt the urge or the need again. I was so fortunate.

I was also very lucky for so much beautiful reconciliation and repair with my mom once high school was done and I moved out. We both grew up. She finally understood and validated my experience. She made space to hold what I shared. We grew close. My wild inner child was finally soothed and my rage was replaced by love. 

###

Gin & Tonic

2:00AM Gin & Tonic
The flavor lingering in my mouth like the last time I was kissed. I mean really kissed. Some men taste so delicious.

Gin & Tonic
Tastes like foreplay. And shared laughter. Tastes like holding hands and a wink from far across the room. Tastes like a brilliant mind. And a gorgeous smile. And contagious laughter. Refreshing, like a man who knows how to heat me up. I miss that part of life.

Gin & Tonic
On his tongue and mine. Naked bodies. No longer thinking. Moving through a buffet of wet sex and passionate love.

Gin & Tonic
Fresh citrus on my tongue. Grapefruit spray lingers in the air. Saturday mornings. Scones and coffee. Now I mourn that part of life, and that wide-alive part of me.

Gin & Tonic
Tastes like lies and broken promises. Hidden messages on a phone. Inappropriate texting. Tastes like lousy fucking cheating. Tastes like crushing disappointment. And shock.

Gin & Tonic, down the wrong pipe. Burning and choking on disbelief. Why can’t I just die? But this is the day we are given. And a new partner is nowhere in sight. That last one, said good-bye and cried. More tears than a baby, as his mommy leaves for work. Wait! I wish I’d shouted. Come back here and teach me how to un-love you. What do you mean you will always love me? And stop crying. Stop it! You’ve done this your whole life. Teach me. Teach me how to un-love.

3:00am Sipping Port
Its syrupy flavor coats the bitter taste of broken love. The perfectly cut-crystal glasses bounce daggers of light between us. We’re on the front porch. He’s still crying. I need some fucking sleep.

Bring me a polished wooden treasure box, with inlaid cabochon jewels on the lid. Opals, Turquoise and Tiger-eye. Line it in silky white satin. A soft and sacred space to hold my broken heart.

Put me back the way you found me. Everything cute and funny and sexy and smart. Intact. Restore my original settings. Give me back my self. My confidence, my power. You stripped me bare with your boyish charm.  I was all-in.

Gin & Tonic
The aftertaste of old love. Memories. Sorrow. Crushed dreams on crushed ice. New dreams only come when you sleep.

This is the day we are given.
Please don’t let me slip away.

I Can and I Can’t

AUGUST 30, 2020

My friend Dikla called me last week. She tells me she’s now been living with MBC (metastatic breast cancer) for 18 years.  And then laughing she says, “my cancer is old enough to vote!” The two of us crack up at this irony. Dikla is one of my Sheroes. And a dear friend. And an inspiration.

We met 13 years ago, when I walked into a UCLA cancer support group. I could barely find my way to the room on the top floor of that 300 building. Hyperventilating, with red eyes from non-stop crying, I had just been diagnosed with Stage 4 of 4, terminal! metastatic breast cancer (MBC).  Seven years after finishing treatment for early stage breast cancer!  (Nope, no family history. Yes, I found the lump myself. No, it wasn’t in my lymph-nodes. No braca gene.  Yes, I was supposed to be “cured”). 

Walking into that Living Beyond Limits group, my head was spinning.  Celeste, our facilitator, was one of the loveliest women I’ve ever met. She is a pillar of grace and kindness. And love and support.  She still facilitates that support group, although now via zoom.

13 years ago, that group was my lifeline. I met Dikla that first week. Plus, many others—probably 10 of us around the table. Month after month I realized many of the original women had started to die. It was heavy, and it was freaking me out.

I said to Dikla, pretty soon we will be the last girls standing—maybe we should stay away from group for a while. We laughed, but the fear, sadness and heartache were real.  We continued to show up.

Every three weeks I’m supposed to have treatment. An infusion. Because of Covid, I have to go alone. Thankfully I love my nursing team and because I’ve been in treatment for so many years I feel oddly at home there.  This new drug, called Enhertu, which to me sounds like I-hurt-you, is a cutting-edge treatment for heavily pre-treated people with MBC.   What is it, you ask? Enhertu is an ADC (antibody-drug conjugate) targeted therapy. The combination of the topoisomerase I inhibitor and the linking compound is called deruxtecan. The linking compound attaches (conjugates) the fam-trastuzumab to the topoisomerase I inhibitor chemotherapy. Get it? Well, I do. 

Most of us living with MBC have an honorary PhD in Oncology.  I certainly do.  It took me about 3-4 hours of dedicated nightly reading, researching, watching lectures, listening to science panels, and looking words up, one by one by one by one.  After three years, I was conversant.  By year four, I could weigh in on my own treatment plan and suggest outside the box thinking on drug combos to my team.  I was treated as a colleague but most important, I was respected as an expert on my own case. 

Every three weeks when it’s go-day, I think “I can’t do it again”.
I can and I can’t.
I’m the little engine who obsesses.

It’s been eight months of every three weeks, I can and I can’t.
The little engine who chemos. 

My doctor has done two dose reductions to try to help mitigate my side-effucks.  By the way, I have doubled-down on calling side-effects side-effucks. This was a term I recently heard from a new Twitter friend, Silke. When I attributed it to her, there was a long thread of metastatic breast cancer survivors attributing it to another person and another person and another person. Whomever the original clever-creator, it is my go forward term from now on.

I can and I can’t.
I don’t know if I can take another cycle. 

It’s hard to describe the days following chemotherapy. I feel poisoned. Rotten inside. Like I drank battery acid.  Nauseous.  I have no shortage of meds for my meds.  Steroids to help the nausea.  Anti-nausea pre and post meds. It’s so much medicine, but it’s the only way through. 

This drug is so tough. We have a private Facebook group for people on this regime.  In December 2019, when the group was started, we had about 50 members.  Now we are over 250.  That is still a tiny amount of people for an FDA approved regime.  Usually a chemo-specific Facebook group will have membership in the thousands. 

I have a handful of friends who are still on the original clinical trial for this drug.  Still enduring arduous scans every 6 weeks, tons of blood work, all day observations, and rigid rules of the trial.  These friends have made it possible for me and others to have access to this new drug.  And they’ve also managed to stay on this regime for two years and counting.  They are well past cycle #34. I just finished cycle #11. 

I can and I can’t.

I’ve used my time this summer to become involved in two different initiatives to make life better for people living with MBC. One of the initiatives has to do with patient centered dosing, and how people with MBC should be having conversations with their oncologists PRIOR to starting a new regime, to determine the appropriate starting dose based upon their unique case.  We have gathered data from over 1200 people living with MBC and will present our findings later this year at an annual prestigious conference. 

I can and I can’t.

Another initiative has to do with making clinical trials more accessible for patients living with breast cancer brain mets. When breast cancer metastasizes, or spreads to other organs, like the lungs, or bones, or brain, it is still breast cancer.  It doesn’t turn into lung cancer, or bone cancer.  The same is true for when breast cancer spreads into the brain.  Commonly called mets (metastasis) brain mets are tricky fuckers to treat. 

Patients with Brain Mets, LMD (Leptomeningeal disease) and CNS (central nervous system) mets have a have a much worse prognosis. We’re harder to treat.  Therefore, many clinical trials hesitate to add in this population because it can make their trial results look worse. Yes. Read that again.

I can and I can’t. 

I am working with a team of metastatic breast cancer patients, and some big Pharma partners, and some fabulous allies, under an alliance, to insist that big Pharma include people with Breast Cancer Brain Mets, LMD, and CNS disease in their clinical trials, early on. To give us a fair chance to live. Sharing our stories is the best way for this to happen.  Oftentimes scientists and researchers do not have many opportunities to interact with actual people living with MBC.  There is a disconnect.  Our first step was to share our stories via zoom, to create connection.  It was an inspired meeting. 

I can and I can’t.

Today I feel shaky, weak, stomach pain, short of breath. I’ve been running a fever, have a cough.  All typical side-effucks of Enhertu.  I feel Scared. Anxious. Alone.  My friends call and they check on me, but I’m not well enough to sit outside today. What would be great, is to have people in my background. In my physical space. The sounds of life in the background of my house, while I’m resting.  No can do…Covid has messed that up.

I click online and see some of my beautiful advocacy friends working hard.  They are busy raising money, pod-casting, sharing their stories, promoting diversity, amplifying Black Lives Matter, teaching, organizing conferences, networking, giving support, encouragement, sharing life photos, kids visiting, sharing links - sharing vital information that may be lifesaving in helping others live a bit longer and a bit better.  I see an online community working their asses off at being Brave Thrivers. Everyone living with MBC knows how this will end.  There is no cure.  There is no winning.

These friends deeply inspire me. I draw so much strength from them. More than they realize.  Their ability to push through, inspires me to push through. All of us fighting to keep a toehold while reaching to pull someone up along with us. Keep moving forward.  This MBC community has become my extended family.

I can’t and I can.

Mating

JULY 14, 2020

Everything comes in pairs; Shoes, gloves, pants. And People. Especially people. Days before my 3rd birthday, I asked my parents where my person was.

“Everybody has a person, I said to my mom. Grandma has Poppy. Uncle Billy has Aunt Jane and you have daddy.” Where’s MY person?

My mother was very pregnant with my sister at the time. Everyone was excited and talking about “the baby” and how I was going to be a big sister.  I was already a little mother; how would I be a big sister? I needed a person!

Days before my 3rd birthday, a great big box was brought into the house. My grandparents and parents gathered to watch me open it. It was a giant doll! My mother excitedly said, here’s your person! It’s Chatty Cathy! I pulled the string from the side of her neck. And immediately I hated her. I mean, c’mon…a 3-year-old who wanted a person was not going to be appeased by a fucking giant plastic doll with scary blue blinky-eyes and a pull string coming out of her neck!

Nearly 60 years later, I find myself again wondering, where’s my person?

I’ve been part of a couple for more years than not. Starting very young, my parents always liked to remind me how I was accused of being “the only married student” in junior high school, according to the guidance counselor. Fine. Yes, I had the same boyfriend for many years starting in Junior high school. If that made me married I was OK with it. 

In Mate-Seeking, my subconscious plays a bigger role than I’d like. More times than not, I’m drawn again and again to a certain type of screwed up man, matching screw for screw to my father’s screws.  In fact, I even knew that my intense attraction to my last mate was also an intense measure of his emotional damage. He best matched my dad, and in hindsight he exceeded the number of screws.  If my screwed up subconscious could write an in-search-of ad, it would read like this: 

MAN WANTED: Must be metrosexual, meticulous in your own hygiene, meticulous in your critique of mine; meticulous about everything.  Should be smart, strong, yet silent type. Must smell good. No weird fetishes.  Must not be overweight or (God forbid) a slob. If you make him tall and thin, with a great smile, and if he’s funny, I am sure to be smitten. Stars in my eyes, he’s my guy.

“Where is my person” was easier to answer when I wasn’t dealing with an illness.  And when I was a decade younger. And a decade funnier.

Adam & Eve, Kanye & Kim, Sonny & Cher. The world is filled with couples. I’ve always felt that I’m not meant to live my life alone. I am happier with a mate. More fulfilled sexually, emotionally, mentally and whatever other alleys are filled by the presence of a mate sharing my life.  Like the Albatross, I meant to mate for life.  Also, like the Albatross, my girlfriends fill most of my needs.  Every now and then, they have to step aside if the right man comes along.

I tend not to dwell in the past or the future. What serves me best is to deal one day at a time. I know it’s cliché, but it truly works. I don’t know if I’ll be without a mate for the rest of my life, or if an unexpected pairing will penetrate my world. Maybe some random dragonfly of a dude will hook up with me mid-flight!

Ketchup and the Beverly Hills Hotel 1977

JULY 11, 2020

I’d say “keeping a straight face” was the theme of planning my entire (first) wedding.

Finding a few fancy white dresses that I really liked, I was very excited to take my mom back to the shop.  As soon as we walked in the store on that crowded Saturday morning I realized it was not a bridal shop but a shop for buying a dress for your Quinceañera.

My mom and I were trying to keep a straight face while I, a 20-year-old Jewish girl, took several fancy Quinceanera dresses into the fitting room which was filled with teenage Latina girls. The sales woman was kind and brought a chair so my mom could sit. 

“I’m plotzing from this place” my mom says to me. I try not to laugh. We started our day at the snobby bridal shop in Saks.  There, the sales women were very snooty, and didn’t appreciate my feedback that everything they had me try on was too itchy.  Here, the sales woman was kind, even though my mom and I were the only two not speaking Spanish. And I’m sure my mom was the only woman speaking English with Yiddish seasoning. 

One dress in particular, was very pretty, and I felt beautiful in the way I think all brides should feel. It was off the shoulders and had layered tiers of sheer fabric. And it didn’t itch! Not at all! I sashayed out of the fitting room. Did a spin! Look ma, no bra! Big grin on my face. She was mortified at my loud announcement but at the same time she started to laugh. How much, she asked?  The dress was less than $200, which made us both very happy.  I was already getting a wedding at the Beverly Hills Hotel. I didn’t want my working parents to spend thousands on a wedding dress.

We did wind up going back to Saks and buying a veil.  I tried it on with my new quinceañera dress that I brought in with me. The sales woman’s nose was so high in the air all we could see were her snobby nostrils. But I didn’t give a fuck. I made a pig face behind her back and again my mom and I busted up.

The days spent planning my wedding hold very wonderful memories of time spent with my mom. She was enjoying being the mother of the bride and I was enjoying being the bride.

My favorite memory was when my mom and I went to the Beverly Hills hotel to meet with the banquet manager.

Back then there was just one person who was in charge of everything for your event. His name was Otto Bangamann and he had a very thick accent. He was barely 5 feet tall, or as my family would say, no bigger than a fart.  We had to finalize the menu, which gave our guests a meat or fish option. 

We were escorted down to Mr. Bangamann ‘s office. It was a very glamorous space, but small; I still remember the heavy gold metal chairs, with the faux bamboo backs, upholstered in peach velvet.  My mother could not budge her chair it was so heavy, but Mr. Bangamann being ever the gentleman, helped her get seated.

He then proceeded to discuss the menu with us. The one thing that stood out was my mother trying to explain to him how in addition to the very elegant dinner we were serving, we had to have Heinz ketchup bottles on every table.  Of the 10 tables of 12 people each, at least 60 of those people were flying here from New Jersey—Our East Coast family. My entire family has a unique affinity for Heinz ketchup.

Apparently, they can’t even begin to eat a meal unless there’s a bottle is in plain sight. And it can’t be anything off brand. It’s got to be the real deal. And it can’t be decanted into a fancy bowl because then it is unverifiable. And that is, of course, unacceptable.

Once I was out to dinner with my family when the idea that the restaurant was using Heinz bottles but filling them with off brand “catsup” came up. This started a table war with everyone patting out puddles of ketchup on their plates, dipping their fries and taste testing. My dad called the waitress over and my mom politely asked if they were filling the Heinz bottles with non-Heinz ketchup.  She looked mortified, going one step further and saying she had filled the bottles herself and yes, it was all Heinz.  She then quickly cleared all our ketchup-filled plates. And brought us the check. We looked at each other knowingly. There was no fucking way that was Heinz ketchup and we left.  My dad still left her a good tip. 

Back at the catering office Mr. Bangamann was looking a bit mortified himself.  Mrs. Klein, he said to my mother, I’m sorry, vee cannot have catsup on zee tables. Zis iss not done at zee Beverly Hills Hotel.

I look over at my mom and I see her holding her face so she doesn’t laugh. Kind of pinching in her cheeks.  Just seeing this classic move of hers makes me start to laugh. I’m terrible at holding in my laughter.  But I was very good at fake sneezing so I throw in a few sneezes. This odd outbreak of sneezes breaks the tension and gives my mom time to compose herself. And stop her face pinching. 

We do not wish to insult Otto Bangamann. He’s been very nice and very accommodating. But between his thick accent, and his attack on Heinz ketchup, I can see my mom winding up for a come-back.  “Mr. Bangamann, she begins, while I appreciate your position, this is our affair. We must have ketchup on every table. It must be Heinz. And it must be in the original bottles. One bottle per table.” I am now doubled over coughing trying to camouflage my laughter. My mother is back to pinching her own face. Wisely Mr. Bangamann moves the topic forward, to that of the cake.

 How many layers would you like on the cake? My mom and I look at each other— how the hell should we know? My mom asks what he suggests, how many do we need to feed 100 guests? He launches into a big explanation on layers of cake, and layers of people. My mom is again face-pinching.  I’m not even breathing, I’m trying so hard not to laugh. Next, he puts on teeny-tiny wire framed reading glasses and gets out a very long piece of paper.  Just the site of this long paper makes my mom and me both grab our cheeks.  What the fuck could this long paper be? Would he next don a velvet coat and play a trumpet?

He starts reading down an enormous list from the game show $100,000 Pyramid. Category: things you’d find on a wedding cake. Whatever he asks, we just nod yes.  It’s the best we can do.  We are mother-daughter cheek-pinching bobbleheads. Then he clears his throat and like any good game show host, he reads us back our answers: 
Layers - 3 plus topper
Cake - White
Icing - white
Beading: yes
Strings of pearls: yes
Garlands: yes
Dots: yes
Bows - yes
Piping - yes
Flowers - yes
Petals - yes

He suggests lemon filling. I say fine, thank you.  My poor cheeks.  If he doesn’t stop, I’ll have to start sneezing again.  Finally, his checklist is done, the ketchup dilemma not really solved but I can only hope that the message was delivered by my mother’s raised eyebrows.

 I overhear my mom talking long distance, to her cousin one night.  “Harold, you wouldn’t believe the aggravation we had with this pip, Mr. Bangamann.   He didn’t want to put Heinz out on the table. He kept suggesting that they serve it in a silver dish. I had to explain to him so many times that we need the facocktah bottles of ketchup on the facocktah table. I told him if he doesn’t have the ketchup on the table, my entire family is going to ask for the bottle so he might as well put them out ahead of time.”

On the night of my wedding the rabbi came to our room for us to sign our marriage certificate. While we were signing there was a knock at the door. Somehow, we accidentally had two rabbis show up to marry us. We also had a wedding crasher at our party, and not Owen Wilson. Bad omens? As soon I began my walk down the aisle on my father’s arm I started crying.  Another omen. Later that night I thanked my parents for a beautiful wedding. I say to my dad it was such a wonderful party - I wish people could get married more than once in their lifetime. I meant that in the best way possible, because it was such a fantastic party. 

In hindsight it was a terrible thing to say and the color drained from my dad’s face, faster than the money drained from his checkbook. Also, in hindsight, how was I supposed to know that I’d wake up one day and want a divorce? But that night of my wedding, the wild child in me felt tame.  I saw how happy my family was. I was finally settling down. With or without ketchup, I was turning out okay.

The Shamed Invisibles

Stage Four, MBC. We are the shamed invisibles.
Somehow, WE didn’t beat cancer. Cancer beat us. 

Shaking our heads in disbelief.
Feeling like we’ve failed.
We fought during early stage.
Fought hard.
As if our life depended on it. 

Our eyes cast down in shame, we whisper “yes, stage four”. 
Lifelong treatment. Yes.
We’re so sorry,
To put you, our beloveds, through this all over again. 

I know you saw me eating ice cream,
a potato chip, some candy.
I know I had a drink or two.
But besides that occasional digression-
I really tried to win. 

I’ll admit I wasn’t managing stress well. 
Sure I let my ex get the best of me.
The way he tried to take me down.
Take my home. Take my money.
The ways in which he lived in lies.
And how shocking it was to see him leave our kids.
I’ll admit—I let that stress get to me.
I let that grief suffocate me. At least for a while. 

Yes, I should have yoga’d more.
And breathed more. Cardio’d more.
Slept more. Meditated. Relaxed.
Let go of anger. And fear. 

I’m so sorry.
I know it’s hard for you
to see this happening to me.
To see me losing.
After all you went through
with me the first time.

All that time.
Mommy always sick.
Then the recurrence.
Mom in bed.
The surgeries.
The chemo.

And 11 years later,
the beast came back.
Single mom and single cancer patient,
Stage 4 terminal
I was so terrified. 

I hope you see it’s hard for me, too.
To see the fear and sadness on your faces;
to see so much premature grief
on your beautiful faces—it’s hard for me, too. 
I’m not used to losing
or failing
or coming up short.

Yet here I am
stage4 metastatic
breast cancer, shhhhhh.
I’m so sorry.
Truly deeply sorry. 
I hope you see, it’s hard for me too.

I am the shamed invisible.
I didn’t beat it.
I didn’t kick its ass.
And it is kicking mine. 

I Am A Mess

OCTOBER 19, 2020

I wasn’t cut out for this and I am a mess

Every time I feel like I grab my center
I get re-centered
Every time I am centered
something knocks me right on my ass

I feel very scared
I did not get the best results on my pet-scan
My next steps are not very promising

And the MRI machine tried to swallow me today.  It’s the fucking clothes.  I tried to explain that I don’t do hospital wear.  They do not care.  So they give me gowns, with hundreds of strings, tie this across that and then put this one on backwards; you don’t have to do the snaps and then “sorry Mrs Henderson, we only have XL pants, but just tie the string, and make sure you don’t have any clothes underneath, or any metal and leave it all in the room, and here’s a giant ruler with a key fob that might be wet from my personalized sanitizing efforts, but hey, lock up all your stuff.”  He went on, “my name is Francis, I will escort you to the MRI room, can I see your wrist band?”  I’m wondering if he notices that my name is Flori Hendron and not Florence Henderson.

I wasn’t cut out for this and I am a mess

I somehow got tricked into thinking that may be my treatment was actually working, and that I would somehow be able to stick it out and stay alive for a while. Even as I say these words I am crying because the side effucks still haven’t resolved and it’s been four weeks since my last treatment. Especially my stomachaches. Weird upper stomach thing. Shortness of breath. And shortness of patience

I have advanced breast cancer. I have some kind of involvement in my central nervous system. My lungs are not too happy. Hard to say for certain what’s going on in my lungs. Inflammation from some kind of a bacterium? Or Inflammation from cancer? Or inflammation from months of dangerous air quality?

I want to finish my art. I want to get my website finished. I want to get my book finished. I want to live to see my grandniece or nephew. And maybe even my own grandchild.

Covid has made my life 1 million times worse. Maybe 1 billion times worse.  And living on my street has become utter hell. This is the second time in less than a week that there’s a big protest on the corner and so my street is wall to wall cars and filled w people honking, people yelling, and all of it is very unnerving. I feel scared. I wish I had two huge German Shepherds in my front yard. Then I would feel safe.

I am exhausted all the time. I’m scared to be dead, but I wish I was dead. Don’t go. The old me stood in the mirror, looking back. I had to look away from her.  I could see the disappointment in her eyes.  Don’t go, she silently pleaded.  I felt hinged between the worlds, the peace of being dead, but the sorrow for all I leave behind.

I am a mess.

Hands Wide Open

AUGUST 28, 2020

Sometimes I make lists of all my lovers. They all cry at the end. Big sad little boy tears. “I will always love you” they say. I cry too. For a different reason. I cry grief at yet another failed relationship. I am profoundly sad and in deep emotional pain.

 How do you stop loving someone? Yet each time I manage to stop my love. To see only the bad, the disappointments, the dysfunctional ways in which the right person was the wrong person.

My repetition compulsion—no matter the exterior disguise my subconscious can lock onto the wrong person, even when he masquerades as Man Alright. Man Evolved. Functional Man. Emotionally available Man. Communicative Man. The last Man Wrong really had me fooled. I was so direct. So open. Point blank gave him a million opportunities to exit.  Each time our relationship was about to go deeper I’d ask, how are you feeling about us? Are you okay?

He was the run-away groom. Having proposed to more than a handful of women in his life, always calling things off at the last minute. “I stayed because I loved her dog.” I didn’t want marriage, and while he did love my dog but he also loved me. “Move to NY with me, Sweetie” he said. An offer I couldn’t accept. We didn’t even live together here, how can moving to NY and living together there be a good idea?

He held an overly romanticized vision of us in Manhattan. Never mind that we had two homes in LA. Plus friends and community in LA. I also had family and my medical team. Not something to easily walk away from. He is on the road 3-4 days during the week. Why would I want to be all alone in NYC? I joke and ask are we going to get two apartments 4 miles apart?  He says we will be together. Okay I say, how about a trial? I will live with you here for 30 days and see how it feels for both of us.

Part of me hoped he would be happy and it would work for him. I knew I could be there. But for him, at age 58 and never finding the right woman to commit comfortably—I knew I was pushing him. A week later he called me to say he couldn’t do “this” anymore. He was more comfortable being single. I said he couldn’t end our nearly three years over the phone. He had to come over, sit face to face to discuss like a man. The next night he showed up with all my stuff. Neatly wrapped, packed, lovingly folded all in bags. My makeup packed in individual zip lock baggies.  He cried his eyes out over how much he loved me and how he would always love me. I cried too. I knew I would not always love him.

I told him I don’t do breakups and get-back-togetherings.  I gave him back his keys, and he asked if he should hang on to mine in case I needed help or something.  You are not my person anymore I say.  If I need something I will ask someone else. 

My heart was breaking, I loved him for so long with my hands wide open.  No friends could understand what I meant by that, but I understood it, and I knew it was the only way to be with him.  And then he started the “move to NY Sweetie” nonsense, and as he started to pull away my hands clutched closed. In the weeks that followed, I focused on how in 58 years this man could never find the right woman. And that thought helped me to know it wasn’t personal. 

I don’t want to love with my hands wide open.  I want to be free, to love someone who can accept and feel my love, arms open or wrapped tightly around him. 

Reincarnation & Making Closure

SEPTEMBER 14, 2020

My mother always joked that when she died she wanted to be reincarnated as a French Poodle living in a Jewish household. I always thought it was hysterically funny. Interesting that no one disputed her joke.  My father never said that’s ridiculous there is no such thing as reincarnation. Instead they were many examples of the spiritual world in my household. Especially from my father.

He was always having a dream, a feeling or a premonition. One time they were going to a summer wedding, and my dad said he dreamt that the bride fell. My mom laughed at him, she was used to his dream declarations. Later that night, when they came back from the wedding, we found out that my mom fell!  She was wearing a light cream-colored dress.

My dad shaved every day with an electric razor sent to him by my Poppy Al, his father-in-law. Whenever the razor wasn’t working properly he say to my mom, Jude, we’d better call your father.  I have a bad feeling. Every time it turned out to be correct. My grandfather had a stroke. My grandfather fell. And each time the razor wouldn’t work until after the calls were made. It was super-weird but something they both accepted as “matter of fact” - the literal definition of that expression.

My dad was so superstitious, that he had a hard time committing to doing things much in advance. “Let’s see, he always said, let’s wait for the weekend to decide, let’s see what happens by the weekend.” Many times, he would shake his head no saying he didn’t have a good feeling - we shouldn’t go there. And then there were just as many times where he would say, “Yes let’s go!”

Sometimes we’d pack the car and head to “Vegas” where he was in superstition to the 10th power mode. 

Standing well behind the ropes and behind him at the black jack table, I could see I was bringing him good luck.  His stack of chips was growing.  I’d stand like a statue, watching, he’d barely acknowledge me except to see my out of the corner of his eye. He knew, that I knew not to move.  My special good luck powers were working, until the dealer said to him with a nod towards me, “is she yours, she’s nice.”  My father’s relaxed demeanor snapped to anger, looking like he might kill the dealer for making such a crude remark about his teen daughter. 

Cigarette hanging from his mouth, he cashed out and we walked across the Casino to play Roulette.  Once again, I stood behind the ropes and behind him as he played roulette.  A game of chance and intuition. 

My parents always played the same numbers; our birthdays, their anniversary and a lucky number 26.  It was fun to watch! Guess red or black coming up next, I was learning to feel the feeling and not to think the answer.

After years of being a heavy smoker, my dad did not get lung cancer but he did get cancer.

Towards the end of his life, his first cousin Marvin came from New Jersey to say goodbye to him. They were more like brothers. The kids and I went over to see Marvin and to spend the afternoon with him at my dad’s. They reminisced. They told us crazy stories of shenanigans from years ago.  And we all laughed till we couldn’t breathe.  Especially them.

On the way home, my daughter got very upset and said to me, “why are Poppy and Marvin just acting like everything is OK?”

I explained to her about having closure and saying goodbye, and that Marvin came to say goodbye to his dear cousin.  And how they were connected from early childhood on, and their way was through laughter, memories and not tears.  I explained that having the opportunity to have closure with someone when their death is around the corner, and to be able to say your goodbyes and reminisce and laugh is a blessing for all. 

The next day my daughter told me she wanted to “make closure” with Poppy.  And she wrote him a heartfelt letter.  And at the awkward age between girlhood and womanhood, my daughter sat with her Poppy in the big chair and read him her love letter. My dad wept as she read to him. Expressing her love and all her favorite things about him. I was not that brave. 

That prompted his grandkids to do the same; and one by one they “made closure”. What a rich life when your grandchildren love and adore you enough to tell you so before you die.

We had a soft-spoken male caretaker stay at the house when my dad lost the ability to walk. I would stop in and sit with my dad, as much as he would permit, the end was getting near.  Even then, sitting in the kitchen and doing art while he was in the other room, me just trying to be there with him--annoyed him. What are you doing in there? he’d shout. Nothing dad I’m just painting. Well, don’t start rearranging the cabinets. (For the record I have never rearranged his cabinets).

A couple days later I was sitting with him in the family room, his eyes resting closed.  Suddenly he chuckled and said to me, do you see them? See who, dad?  Grandma and mom, and the others; do you see them? And then he said never mind, bubby, you can’t see them. And then he smiled to himself, once again resting his eyes closed.

I have the same eyes as my dad; the same shape and the same hazel color. In the mirror, I can see my dad in my own eyes; in the best of ways and sometimes in the worst of ways.  When I got ready to leave him that day, hovering over his face for a forehead kiss, he again reassured me, with what had become his standard goodbye; Don’t worry bubby, I am okay, watch how you go.  Okay dad I said, I’ll see you tomorrow.

He died that night.

For weeks I looked for signs of him. Only once I have I ever seen him. It is not a vivid memory. It was evening and out of the corner of my eye he materialized, he was there, in my home, sitting in a chair. It was a sideways flash of energy - lasted a second. I gasped, my heart pounding. But it was him. 

I’m sure he just stopped in to check on me and the kids. And maybe to show me he was okay. Hi dad, I said out loud. Thanks for coming to see me and the kids.  We miss you Dad, and we are all okay. Give my love to mom and the others.  Watch over the kids, Dad. 

And come back to see me anytime. 

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