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.