As an American, I’ve known that I was different since I went to public kindergarten and was the only kid who didn’t celebrate Christmas. Many of the residents of my hometown were of Scandinavian descent in those years, so if you look at class photos from the public school I attended through half of 3rd grade, I’m easy to spot with my dark, curly hair, light-olive skin, and ethnic features among a sea of lily-white towheads.
The kids at that school would pick on me—if not for my ethnicity then for the shape of my eyes, with their prominent lids in comparison to their slanted, lidless ones that I think were referred to as Norwegian folds. They called me names since I was Jewish and I didn’t understand any of it. I was always a small, thin girl who liked art and books and they were so big and tall and sporty.
I remember that when I had a bad day, I would go home and look for my father. On a day that I was teased about my eyes a lot, I recall I found my father primping in front of the mirror in the master bathroom—a testament to his vanity. I told him about what the kids were saying to me at school. I have my father’s eyes—right down to the unusual color—and he told me, “Actually, our eyes are very attractive,” while he continued to pick out his kinky hair. I no longer cared about how different my eyes were after that.
However, the slurs got worse and I was sent to a private school halfway through 3rd grade. Suddenly, there were Chinese kids and Persian kids and Jewish kids, too. It was a Montessori school, which was a really good fit for an independent-type like me, and my father even entrusted me with the big, tuition check that I was instructed to drop off at the principal’s office.
I remember the Persian girls at my school, and there weren’t any boys for some reason. They had come in ’79 with their families, fleeing for their lives after the coup because they had connections to the Shah. I knew something had happened in Iran; I recall watching the blindfolded, American hostages and the huge banners of the Ayatollah on T.V. and thought Iran was the scariest country in the world, but my Persian friends were so American and they looked somewhat like my father and me. They had different names, but they didn’t have accents and I had no idea they spoke Farsi, but they must have. So, I never have really had a problem with Persians in the U.S., despite what people probably think due to Iran’s intolerable stance towards Israel. In the end, this is America, and I’ve always felt more comfortable around other minorities.
After a lifetime of passing for so many ethnicities: Italian, Arab, half-black, Latina, Spanish, Greek, and yes, Persian, I found myself at my new, Persian kabob restaurant this week with the masses who don’t celebrate Christmas, as Christmas has somehow become a week-long holiday nowadays. A party had been booked and the small, casual restaurant was packed full of Persians. Most I have known aren’t religious, but all the women had their hair covered. They were dressed a bit more like Muslim-Arabs, but spoke Farsi.
I found this new spot a couple of weeks ago and after chatting with the owner, I learned he came to my city in the desert in the ’70s before the coup. After I explained my food allergies, we haggled over a price for 3 orders of beef shish as they say—a shortened version of shish kabob. It’s the only protein I get, so I’m a bit particular. I didn’t want salad with mystery dressing, rice (mine is better), grilled onions and tomatoes, sumac, or secret sauce full of spices, all of which leaves me scratching my skin open for days due to some bizarre complication from Ehlers-Danlos syndrome.
However, when I made my way to the counter to order this time, a woman with very curly hair like mine was working, but it was naturally blonde. She had an accent, but I wasn’t sure where she was from with her hair color and light skin. She asked me in English if I was with the party and I said that I wasn’t. She looked like an Israeli to me or possibly a Persian Jew since she worked at a Persian restaurant, but I had no time to ask since she was trying to charge me full price for only ordering the beef shish. I was back to explaining my special order and haggling over the price, so I showed her my last receipt that I’d saved in the event the owner wasn’t in and then I saw him working in the kitchen and got a smile and a nod and all was settled. I had my sclerals in since I had to drive and while I was waiting after I ordered, something amusing happened that represents my experience as a minority in America.
I was leaning against a curved, deli case at the side of the restaurant stretching out my achy back and I could see all the patrons who were gathered for this party. Everyone had light-olive skin and dark hair, or at least the ones who didn’t cover their hair. They had facial features that were not so different from mine and while they didn’t look like my people exactly and I didn’t see my eyes anywhere, there was a familiarity as there often is. Yes, my sclerals work quite well at certain distances in dim lighting, even if my eyes hurt so badly I want to rip them out of the sockets.
I remembered how a former friend’s mother had once told me to become a spy because I could pass for so many ethnicities. I wondered if this huge group of people—all Muslims of Iranian descent—knew that I was different like all those kids back home did. Was my Jewishness blinding them? I felt at home with so many people who shared a similar look and regardless, the huge flock of Persians in Los Angeles ask each other if they’re Muslim or Jewish out of curiosity when they meet, so I wondered. Would I pass for a Persian like I had so many times before? Did I fit in, even if I was different?
Suddenly, an older woman with a headscarf looked at me a few times and then got up from the table and approached me. I’m petite, but I seemed to tower over her. She was very close to me, such a taboo in America, and spoke in Farsi. I had a feeling she wanted to know where the bathroom was, but I don’t know any Farsi at all—only some words in Arabic. I told her apologetically, “Only English,” and she repeated a heavily accented, “English,” and we smiled and she found the woman with the blonde, curly hair and big eyes like mine and off to the bathroom she went. I guess I should have gone with my gut and just pointed, but she quelled my curiosity: I passed.
Finally, my take-out order of beef shish was ready and the blonde woman rushed it over to me, apologizing for the wait. I asked her if she was Persian and she said that she was. She asked me if I was and I told her that I was Jewish, but people often think I’m Persian. I said that I thought she was Israeli, but apparently not. Then, she wished me a Merry Christmas—the two words I’ve heard non-stop the whole month—but she quickly corrected herself. I gave her a big smile because for once, I didn’t have to do it myself.
I’ve never been much of a patriot, but the one thing I love about the States is that on the most boring of weeks for non-Christians, so many minorities can come together and find commonality. At the end of the day, we all want to fit in one way or another in this country called America.
I wear a large, gold pendant on a thick, gold chain around my neck. My hand frequently gravitates to the pendant to make sure the necklace is still there. When I am nervous, I rub the six points and the intricate grooves on the surface and feel the smoothness of the two Hebrew letters—Chet and Yud—that spell Chai. I never take it off, unless I need imaging done and the techs force me to unclasp it and then I hide the necklace in my purse, as it is really worth its weight in gold these days. The large pendant—a popular style from the late ’70s and designed for a man—has sat on my chest for almost 25 years, but the chain is not the original and was replaced less than a decade ago.
The pendant was my father’s. He bought it for himself most likely to follow the trend and display his pride of being a Jew when most men had large crosses, and wore it until the disco look went out of style in the early ’80s. The pendant is solid gold and heavy—far too heavy for the near 30 years of wear on the original, thinner, gold chain. I never noticed the links were wearing down in spots or that the chain was slowly weakening, like that old bridge on I-5 in my home state of Washington that just gave way and collapsed into the river below.
Around 7 years ago, I was living in a dumpy, rental condo across town. One afternoon, I was standing in the living room next to the laminate pass-through from the kitchen. I bent down for some reason and when I came up, one point of the pendant caught on the edge of the pass-through and the chain ripped off my neck. I saw it fly through the air in slow motion in a state of shock—as the necklace had so much significance to me. I picked it up off the floor and saw that there were numerous thin spots in the chain that I had never noticed, but it was that one spot—the weakest link I suppose—that had broken the chain in two. I knew at that moment that like the chain, the relationship with my father would never be mendable, and thus far, I have been right.
My father and I were estranged, as usually is the case, when the chain broke. We have semi-mended ways and then become estranged again at least a dozen times since that fateful day. He stopped talking to me—and by that I mean via infrequent e-mails—two weeks ago. I had responded to one of his chain e-mails, usually something Jewish: a little humor, a story of the Holocaust that he adds a memorable comment to, or some randoms facts that come his way.
I told him I was about to reach my insurance’s limit for physical therapy for the year and that I could not get an override, despite numerous attempts to do so. My Ehlers-Danlos and subsequent tendonosis is getting worse and I need physical therapy like a diabetic needs insulin. I have not been able to work for years and despise even hinting that I need money. He gives the same stock answer to any problem I mention, even though he would never really do anything. The e-mail came back with the familiar, “What can I do to help?” It sounds so wonderful and caring, like the father I knew as a child who I would search frantically for in our house after a day of being called derogatory slurs at school, but it is just smoke and mirrors now and I already knew the game we would play.
As he would never part with a dime to pay cash for my physical therapy, I gave a smart-ass reply and asked if he could grow a money tree outside of his home—the one that is half a block from Lake Washington with a 180° view of Seattle and the lake. The argument ensued. He claimed he was broke, his other stock answer, and I asked how a broke man has that home, and a custom Mercedes, and two country club memberships, and takes vacations every year. I would have mentioned shopping at Nordstrom’s and his young, gold-digger girlfriend, but that gets very messy. He replied with, “How easily you forget.”
That was a reference to my childhood: growing up as the daughter of a successful businessman who bought me rabbit fur coats and diamond earrings for holidays, living in the beautiful homes that he, a high-end contractor, built, and taking vacations to warm places with palm trees and swimming pools. The poor-little-rich-girl saga that he loves to put me in lately. I suspect the gold-digger, pulp-mill-town girlfriend is behind this as my father would never insinuate such things about me. I was as self-made as he was and he knows that.
How easily he forgot that he, my only real parent, emotionally abandoned me by middle school, made me start working when I was 14 so I would have a work ethic, that I never had anything in common with the few, spoiled, Jewish girls I knew growing up, and that if I wanted something as I got older—I bought it myself. Let us not forget that I rarely even lived at my home once I was a teenager due to the dysfunction swarming inside it.
I have had enough of this Jewish-American-Princess story he has invented over the past few years to avoid looking like the horrible father he has unfortunately turned out to be. His story is almost laughable considering I am on SSDI and live in a motel, but I suppose this is how he saves face while golfing with his old friends who have the princess daughters who aren’t even disabled. I ended the e-mail argument by replying, “I do not even know who you are anymore.” I really do not know this man who was so great at times in my early childhood—memories that have nothing to do with material possessions.
Before the price of gold went through the roof, I replaced the broken chain with the thickest twist chain I could find that would fit though the loop of the pendant. It is strong and sturdy and has only had one weak spot that I had a jeweler fix for next to nothing. The newer chain—of a lower karat and different style—is like the father I remember: the rock in my life, the bridge that would never crash down into the cold Skagit River north of Seattle. The old chain, with all the weak spots that eventually broke due to the heavy pendant, is my father now. He is a damaged version of his former self, unable or unwilling to carry any load, and like the chain that was beyond repair, so is he.
I am not aware of when my father’s irrational fear of death and disease began, but it became a part of my life in the late ’70s, around the age of 5. I was an only child then and while I have a long memory, I have little recollection of my mother, who did live in our home. It was my father who raised me and spent time with me on the weekends during those formative years of my life. He taught me many lessons in hopes I would become like him, something that would turn against my father in due time when I stood up to him as a young child—an act that I do recall my mother was incapable of doing. Nonetheless, for as similar as we are, I never acquired this phobia—this duality within his being—that has controlled his life for so long.
People suffering from thanatophobia are so preoccupied with death or dying that it begins to affect their daily lives. They may even develop other disorders as they try to cope with their phobia, such as obsessive-compulsive disorder or hypochondriasis.
My father owned a company and preferred to have an office at home. He was a typical workaholic and if he weren’t at his job sites, he was working away in his office in our daylight basement, either on the phone, looking at blueprints, or crunching numbers that he wrote in ledger books with an electronic calculator not far away—all while talking to himself and making color-coded lists with a large, ballpoint pen with 4 colors of ink. He even had refills for each color and this was all drilled into my head at an early age. Hard work, logic, accounting, lists, and productivity—this is what mattered in life. In all honesty, this was the more normal side of him and I believe his work controlled his obsessive thoughts, even if he looked like some sort of mad scientist working in that small room late into the night.
Way back when, my father could never have imagined that I would get a debilitating, chronic illness as a young adult. I had followed in his footsteps and become a hard-as-nails workaholic like him, until that fateful day when my life unraveled and I no longer could be. I often felt that I was the mirror in which my father saw all of his fears staring back at him. He was so unsupportive and we eventually became estranged. How could a man—whose only comprehension of disease was through an irrational phobia—have any empathy for a sick daughter? He had a duty as my father to be there, just as I had for him.
It all began when I came home from school one day to a quiet house, as if no one were home. I heard my father’s voice calling me from the large master suite at the end of the long hall that ran down one side of the foyer. I found him in bed with a blood pressure cuff on his arm, something he kept in the drawer of his nightstand which I never understood. He spoke in a strange, calm voice, which was not his normal voice and I presume he reserved this voice for his deathbed moments. He told me, “Call the operator. Tell them your father is having a heart attack and tell them ‘no sirens.'” So, I did.
In an emergency, police, ambulances, and firetrucks are required to use sirens and lights for safety, so they all showed up as if the house were on fire and parked in our big, round driveway. I had been waiting for them in the foyer and looking through the glass of the double doors to our house.
I don’t recall having any emotion about this event. I don’t believe I was worried that my father was really dying. He was probably 35 at the time, although that was old to me. He had quit smoking, ran and went to the gym almost daily, and wouldn’t allow any meat in the house—hardly someone to be suffering a cardiac arrest. As a rather shy child, I just think I hated having to call the big, scary operator.
Soon enough, the paramedics made it up the stairs and I opened the door. They asked where my father was and I led them to the master suite. Who knows what went on in there, but they left soon enough and that was that, until the next time it happened. The strangest thing was there was a phone on the nightstand on my father’s side of the bed, so why did I always have to call? Was this another lesson he was trying to teach me?
The blood pressure cuff never went away, but a new medication seemed to help some with his fear of dying until the phobia took a new turn. He began to get diseases that he never really had symptoms of, but his doctors would give him a diagnosis of one bizarre thing after another, which I presume was in attempts to get rid of him.
In the late ’80s, he decided to become a skier. There are several ski slopes near Seattle, so we—which now included my much younger brothers—had to leave cold, rainy Seattle and go to a freezing, snowy mountain for the entire day. My weekends were ruined, but my father was in his element in the Wide World of Sports, while I hid out in the lodge listening to my Walkman and drinking hot cocoa.
That was when Raynaud’s entered my world. My father would chronically complain about his freezing hands and buy box after box of “hand warmers” to shove into his gloves. His only symptom was cold hands, yet a doctor told him he had Raynaud’s, so Raynaud’s it was and the whole world knew about this in time. I’ve seen what Raynaud’s looks like; it’s a disorder of the vascular system, often a result of auto-immune disease, and usually causes the fingers or entire hands to turn purple. His hands were olive, the same color as the skin on the rest of his body. Eventually he got bored of skiing and the Raynaud’s simply disappeared. Maybe he just needed some warmer gloves.
Then, the horrendous vertigo came in the early ’90s. He justified this by saying my grandfather had episodes of vertigo and it was genetic. So, he was back on the deathbed, a tragic recipient of his father’s faulty genes. It was all so familiar, except this was several homes later and my parents had divorced. I was living with my father in his “bachelor pad” condo, as I was in college and my part-time job wouldn’t cover rent. It was back to square one: just the two of us, the deathbed, and the blood pressure cuff in the drawer of the nightstand.
I’d stop home after school to eat and get ready for work and hear that weird voice from the master bedroom. He was sure he was dying of some horrible disease; I think 911 had blocked his number by this time. He went from doctor to doctor for his dizzy spells—it always amazed me that he could get himself to the doctor when the world was spinning in circles.
Finally, he was told he had Meniere’s, a disease of the inner ear, although he only had one symptom of it: vertigo. He told the whole world about his Meniere’s, just like he had with the Raynaud’s and whatever else I’ve forgotten. It’s odd that all his mystery diseases are named after long-dead, French physicians, who I think became imaginary friends in a sense. He still had to “take to the bed” due to his vertigo and was apparently still doctor shopping, since he couldn’t be stuck with this imaginary friend forever. He had a life, after all.
At last, a new doctor gave him a differential diagnosis: ear rocks! Now the whole world had to hear about the ear rocks and how they had turned his entire life upside-down. Soon after his diagnosis, the vertigo just disappeared as fast as it came on. That was also the last time I ever lived with him.
In the 2000s, when I got sick, the phobia morphed into extreme preventative medicine, probably due to the internet and his progressing age, unless my sudden illness became a grim reaper of sorts. This continues today, but has regressed to his original fear of death, coupled with his current obsession with living to 100 without any health problems. For years, he’s devoted much of his time to supplements, extreme diets, continued running and trips to the gym, body scans, 23andMe genetic testing, scopes of all kinds, stress tests, routine visits to the city’s best cardiologist—although he still has nothing wrong with his heart, pharmaceuticals, plastic surgery to assure himself he is younger than his real age, and who knows what else.
Everything, it appears, can be prevented. No disease is incurable. It all boils down to hard work. The duality within him—the phobic and the workaholic—had created an obsession with immortality. Where does that leave me—who has an incurable, genetic connective tissue disorder impervious to this ideology and that so severely affects my life?
I spoke with him recently, which is a rare event, and we discussed all the hard work I’m doing between physical therapy and the gym. While things are better between us due to my new, correct diagnosis of Ehlers-Danlos syndrome, at the end of the conversation he still had to add, “Hopefully all your hard work will make things better.” It wasn’t the blind optimism that bothered me—it was the lesson, from so long ago, that hard work was all that mattered and I could overcome this if I really tried, a message I’ve heard a thousand times before. My body is marginally better than it was, but the pain is the same and what I have is real. I know the prognosis.
I may be my father’s daughter, but I’m a realist and phobias and unrealistic expectations don’t control my life. It is what it is.
Playing The Hand I Was Dealt 