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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.

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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.

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  1. dyspatient says:

    Amazing post, so well written. I want to write more but I have to get to work. I’ll stop in later.

  2. Thanks, D! About killed myself writing it. Stop by when you can make sense out of this one… Lol! 🙂

  3. dyspatient says:

    I don’t know if you’ve read any David Sedaris…this reminded me a bit of his writings about his father. I think it was the obsessive nature and the style of writing.

    The “hard work” notion certainly is a tough one to get through, isn’t it? I think we all have this embedded in us to some degree, I know a lot of us with chronic illnesses are probably more acutely aware of having to confront it in others but I know that we can’t be immune to it inside ourselves too. We absorb it from our culture, and it’s one of the things that makes living with a disease or condition that steals your life away in little bites so tough. We feel like we should be able to exert more control, to try harder, more, better. So interesting that you have this explicit manifestation of it. I wonder if in some way having to come to grips with your father’s attitude gave you an opportunity to address explicitly what so many people just have to deal with implicitly, you know? I certainly don’t mean it as “oh lucky you!” I can’t imagine what living with someone like that would have done to me as a kid. It’s just a sort of “glass half full” (or at least not totally empty) thought.

    • I never read any of David Sedaris’ books, but if I can ever see well enough again, I will for sure! I could write novels on my father and maybe someone will pay to read it!!!

      You brought up so many great points, as usual, and I get where you’re going. I’m the uber-strong person I am due to my father and my life experiences. The relationship with my father is so complex and there are so many sides to him: the phobic (purposely avoiding a certain word here), the workaholic, the “Peter Pan,” the “Napoleon Complex,” the comedian… I refer to him as “the best of times and the worst of times.” It is very odd that we are so similar (even look the same), yet so different, and it’s quite hard to explain!

      I can explicitly call him on his crap and tell him off–that’s for sure, but then we become estranged once again. I’m also the only one who can do that, as he raised me to be that way! I can completely see him for who he is, yet he disappoints me over and over again. No one gets this. I never had this “mother,” so I had my father. That’s all you know as a kid and as he was often a good guy way back then, I continue to hold him to the same high standards that he taught me. Although he has emotionally come and gone in my life for years after my early childhood, I was shocked by his response to my illness, since I thought Mr. Sick would for sure be empathetic–especially since no one else was. I still believe what I wrote about being a mirror is true in that regard. It’s the only way I can make sense out of it.

      The work thing is such a monstrosity. That’s why I’m so glad you can still have a career. It’s so cultural and without a career, I have lost a definition for myself. It’s like some horrible shame that many women don’t understand (I know you get this). I certainly wasn’t raised to be Susie Homemaker–oh, you need a home and whatnot for that and no thanks! It goes back to the immigrant generation and I can hear my late grandfather always talking about “a self-made man,” which he learned from his father. That applied to the 5 women in the family, too. I bought it all and still believe in it! I have no real respect for people who aren’t, so where does that leave me? The pain is the worst thing with this disease, but this is a close second. In all honesty, I don’t think I’ll ever get over not being able to work anymore. Going in circles again…

      Appreciate your thoughts as always,

      • dyspatient says:

        Emailing you on the Sedaris.

        Work and identity. Wasn’t that one of the main themes of “Death of a Salesman”? I think about what I could still do if/when I can’t work. I know it will happen. My sick leave is always zero, I’ve had to go out on FML twice in the last two years. It’s a scary proposition. I know I am blessed for being able to work still. Hm, I think that’s a post.

      • Write a post! 🙂 I need to know someone else gets this part of the human experience (or some tangent of it)…

  4. Love this post. You are such an amazing writer!

    • Thank you and I’m glad you liked it. I’m not a professional, but I do try my best to make sense out of the abstract in things. I’m always aware of my audience and since it’s hard to just write directly on EDS or KC, I have to get a little creative!

      Hope you’re holding up…

  5. Excellent post! My mother was the one that was more prone to always having something wrong with her. I remember an entire year that she had hepatitis and stayed in her room. There was never any real diagnosis as far as I know, but that was a really long year in our house.

    I can only conclude in retrospect that that my mom’s constant ‘illnesses’ were predominantly drug seeking behavior that led her to so may physicians and eventually to doctor shopping when the latest new doctor didn’t think there was anything wrong that needed medicating. I can entirely relate to the new ‘condition of the month’ becoming the focus of not just her life but mine too.

    My Dad, however, (who I got my EDS from) is the polar opposite. He hardly ‘believes’ in doctors and up until my official diagnosis last week, I constantly heard things from him like “well, lots of other people have problems like that… they just don’t TALK about them” or “if there was something really wrong with you, the doctors would know”.

    As your username says, all we really can do is play with the hands that we were dealt. I spent many years up until this point wondering if it really was sort of my fault I wasn’t ‘normal’. Surely if I worked hard enough and did the right things I should be well, right? WRONG. You can bluff all you want, but a hand full of shitty cards is still a hand full of shitty cards once they’re down on the table and you can’t deny the truth.

    • Hey other A,

      Thanks for the comment and dropping by. I can relate on many levels. My father does seem to have some OCD/fear of death thing (his former-wife was the drug-seeking sick person), but my mother is a whole other can of worms. I can clearly see that the EDS (II) came from her, but mainly due to my late-grandfather, as she’s a mild case. I’ve heard the comments from your father from everyone–“just stop complaining about it!” Whatever. I have given up on anyone getting this! Btw, I just created a new category for my father (being the interesting influence he is/was) last night and so you found this oddity!

      Like with you, there is a strong history of addiction in my family coming from my mother’s side. She’s just cold as ice (like her vodka) and odd and never bonded with me. I have no idea what’s wrong with her and she never comes out on my blog. I didn’t get the addictive gene (just the shitty EDS!), but there have been 2 deaths and 1 near-death due to addiction, so i got ya. I haven’t mentioned it on here so will keep in on the down low for now. I do know what it’s like to parent a parent and I have 2 younger brothers I was nearly raising while in college until my grandparents took me seriously. Nightmare!

      You know, I was misdiagnosed for the last 12 yrs with fibro and played the blame game for getting sick a lot–mainly for taking the job in the nasty building I worked in, for being a workaholic, for being a street kid more or less and hanging out with the crowd I did and so on. Getting the EDS diagnosis changed that for me. Once I knew it was genetic, I knew I couldn’t have prevented it no matter what I did. Things still suck, but it gave me a better perspective–especially with the fibro stigma gone (that diagnosis was making less and less sense).

      Well, I’m glad we can relate on this and that, I have you bookmarked and check my bookmarks at least once a week (did I mention?). It’s nice you’re so open on here! I used my 1st name before and had a bit more info before I got attacked on WP–so I just did what I had to do so I can still blog. C’est la vie…

      Talk soon!
      A 🙂

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