It’s Yom Kippur today, or was: the Day of Atonement and the holiest of days in Judaism. I’ve been very sick the past two months due to the never ending monsoon where I live and its affect on my body due to Ehlers-Danlos syndrome, on top of other issues in my life. It’s been very difficult, painful, and depressing, so my mind has wandered to my father as I’ve sat for months in utter isolation, even though we are estranged yet again and have had no contact in months. Last night, before the sun set on Erev Yom Kippur, I sent him an e-mail.
This is a time for reflection: to think of where one has erred and where one can improve. I wasn’t expecting a reply to my e-mail; I just wanted to share my thoughts at this time. I was raised Reform and am not overly observant, but there are traditions I choose to follow.
I wrote in the subject line of the e-mail the traditional greeting on Yom Kippur: Good Yontif, my father—anglicized Yiddish for Good Holiday. The rest was highly personalized on purpose, as I know how to get my father to understand my point, if nothing else. So, I wrote:
My thoughts this Erev Yom Kippur:
My father taught me to be strong and tough, so I am.
My father taught me to be outspoken, so I am.
My father taught me to be responsible, so I am.
My father taught me to be the squeaky wheel, so I am.
My father taught me to be funny, so I am.
My father taught me to be a Jew, so I am.
My father taught me to be affectionate, so I am.
My father taught me to love doo-wap and Motown, so I do.
My father taught me to not let others disrespect me, so I don’t.
My father taught me about tzedakah, so I give back.
My father taught me business sense, so I use it.
My father taught me to speak up against injustice, so I do.
My father taught me to be stubborn, so I am.
My father taught me to talk down to people, so I do.
My father taught me that asking for help is a weakness, so I don’t.
My father taught me to hold grudges, so I do.
My father taught me to not rely on people, so I don’t.
My father taught me to cut people out of my life, and so I do.
I learned all of these traits—both good and bad—from you. I atone the latter: these horrid traits that go back generations. My mother taught me very little that I can recall going back to 1977 and I have few memories of her and so many of you, a man who is long gone now and who has no memories of my formative years. I have many traits that you don’t have and vice versa, but I am my father’s daughter, and it wasn’t from mere observation. You wanted me to be like the man you were years ago before you lost interest, and so that is what I became and still am, despite becoming debilitated and disabled so early in life. I don’t know who you are now, but I knew who you were back then: a father who, despite having many flaws, loved me and who I could always rely on, and who I loved in return.
May you be inscribed in the Book of Life this New Year.
Your daughter
My father replied to my e-mail today and let me preface this by saying that list was abridged and purposely focused on the good traits he taught me. He apologized for some things, which was unheard of, and made excuses for others, but then the e-mail turned sour and was focused on how my family had reached out to me and that this was the time to not be so strong and tough and to let others in, which is just absurd and completely false. I was also told I needed to learn how to apologize. To whom do I need to apologize—my grandmother who told me I was “the broken tile in our family’s mosaic?”
My father stopped talking to me, and by that I mean by e-mail, because I hinted at the fact that my physical therapy benefit was cutting out and as my income is mainly from SSDI—federal disability that pays for my prescriptions and little else—I would need help paying cash for my much needed physical therapy. My father was a successful businessman who lives a very comfortable life, so this was not asking for much.
I won’t even touch on the lack of emotional support from the bulk of my family in general or the verbal assaults thrown my way simply for falling ill due to a genetic disorder. As the day progressed, the back-and-forth e-mails got downright offensive and I was told to not contact him again—all for speaking the truth.
I tried and failed and the impasse continues, and on a day when things should be resolved, as is our tradition. I’m left with a heavy heart and am as frustrated with this relationship as I am with this disease, both of which are utterly incurable.
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.
Photo Source : Henri Huet (www.entrezlesbois.blogspot.com)
I am not a positive thinker, nor am I a cynic. Rather, I refer to myself as a cautious optimist. I don’t like the idea that “everything happens for a reason” because it is a hard pill to swallow when something bad happens and you’re stuck muttering, “Why me?” over and over again. So, in an effort to play this hand I was dealt, I tend to not be a trusting person, I’m ridiculously superstitious, and I refrain from saying, “What else can you put on my plate?” because something else will land there.
I was pondering many things the other day. Is there a timing to bad things happening to us; is there any rhyme or reason? Does fate really exist? I’ve tried to write that off. Why do good people get ailments and diseases that so negatively change their lives or take their lives forever? It happened to me, after all. For some reason, an old memory came to mind. I remembered an X-ray from my childhood and some of my questions were answered.
In 1978, my parents and I moved into a new home that my father, a general contractor, had built. He left the daylight basement unfinished, concrete floor and all, and I spent hours in that oddly-shaped room roller skating to disco on the radio. On one wall was a beautiful, black lacquered cabinet that had belonged to my great-grandfather. It was a treasure chest of sorts and held all of my father’s memorabilia. He had his high school yearbooks, a metal dog collar that said “Waif,” his beloved, childhood pet Boxer, and a big, film X-ray. I would look through his things and wonder about this X-ray. Why was it in there?
The X-ray was of my father’s small intestine. It was from the summer of 1962, not long before he grew out his kinky hair and “conked” it (a chemical relaxer) to look like The Beatles. He was 17 when it was taken and was a recent high school graduate working at the World’s Fair held in Seattle that year. The X-ray revealed a duodenal ulcer that took a year to heal due to the lack of effective medications at the time. Apparently, antacids were all that were available to cure an ulcer in the early ’60s.
As required by law, my father registered with the Selective Service when he turned 18 in the fall of 1962. He was in his 1st year at the University of Washington with plans to major in accounting due to his brain being a human calculator. Unfortunately, my father wasn’t a very good student and decided to sleep late instead of going to school to take his final exams for his 2nd term. It literally was a mistake that could have cost him his life.
1963 was a pivotal year in America. President Kennedy was assassinated and the Vietnam War was escalating. A draft had already been established. My father was issued a draft number, but being a university student could keep you out of the war in the early years. When he dropped-out, however, the draft board sent notice that his number was up. Knowing my father, he must have looked into every way he could to get out of being drafted. Even his shorter stature was above the cut-off mark and he knew it. It seemed he was out of options. My father, however, had one thing the draft board might not like: a duodenal ulcer. Perhaps it had just healed, but it could come back and with records from a good physician, the ulcer could be a golden ticket out of Vietnam. Make that a silver ticket.
My father showed up for his appointment with the draft board with a giant X-ray under his arm and sweat pouring out of his armpits. Would the ulcer suffice? Would he get medical clearance and be saved from certain death in Vietnam? In the end, it did. I think they took one look at this short kid with severe anxiety (all that sweat) whose only athletic talent was playing on his high school’s golf team and figured he’d be more likely to shoot himself than any Viet Cong hiding in the jungle.
My father is now 68 years old, still nostalgic, and still has that X-ray. He’s a smart man, but not a deep thinker so I do that part for him. He knew that ulcer had a deeper meaning though, which is why he always kept that old black and white film of it. As for the ulcer, it never did come back, but my father got GERD instead. For years he’s been on proton pump inhibitors (PPIs) and heartburn-free thanks to modern medicine. For him, putting up with a burning pain in his gut and drinking and chewing chalky antacids around the clock for a year changed his fate in life (alright, so maybe it exists).
The ulcer had a silver lining.
I honor the bravery of every Vietnam Veteran and the memory of those who never returned home. This is a true story and it was necessary to write about the sentiment many young men had regarding the draft at that time.
Playing The Hand I Was Dealt 