Home > Uncategorized > A Season In Hell: My Medical Nightmare – Part 3

A Season In Hell: My Medical Nightmare – Part 3

By Don Millard

It was also during this dark hour that I began to worry that maybe I was somehow to blame for this health nightmare.

Dead Roses

I say this even though I was a pretty clean cut guy. I hadn’t ever done any real drugs. Hell, I hardly even drank until I went off to college where I learned to do that pretty well. I never worked with any hazardous chemicals, and I didn’t live near a nuclear reactor.

But I did have one bad habit and that was chewing tobacco. My friends and I in the neighborhood had picked up the habit as a way to emulate major league baseball players while we played Wiffle Ball. Or maybe it was just because we were boys and boys like to spit. This was also a time when smokeless tobacco was a being marketed as a safe alternative to cigarettes. Although cigarette advertising had been banned from television since 1970, ads for snuff were all over the airwaves. I remember there was Walt Garrison extolling the virtues of ‘Skoal’ while Carlton Fisk sang the praises of ‘Copenhagen.’ US Tobacco, the company that made these lethal products, was even an official sponsor of the 1980 Winter Olympics! Their ads ran incessantly during the games.

Out of all of the kids in the neighborhood, however, I’m pretty sure I was the only one stupid enough to carry this addiction into adulthood. What Jack London wrote about alcohol in ‘John Barleycorn’ could just as easily apply to tobacco: “The palate never ceases to rebel, and the palate can be trusted to know what is good for the body. But men do not knowingly drink for the effect alcohol produces on the body. What they drink for is the brain-effect; and if it must come through the body, so much worse for the body.”

It is only through repeated use that smoking or chewing tobacco becomes pleasurable and tastes good. As anyone who’s ever been addicted to tobacco knows, nicotine seems like your best friend when in reality it’s your worst enemy. I had quit this foul habit more than a few times after I became addicted. I thought I had it beat once and for all, but started up again when we moved to Florida in November of 1988. The town we moved to was kind of a retirement community and the average age was dead. My Dad, meanwhile, had amazingly quit his 2 to 3 pack a day smoking habit in 1984, but started back up again the day before my Mom died from cancer in June of 1986. He would be diagnosed with throat cancer in 1990 and have to have his voice box removed.

Anyhow, I began to fear that perhaps my tobacco use had in some way poisoned my system or my skin and had caused my body to undergo some type of meltdown. I started to think this way because I couldn’t believe that life could be this rotten to someone my age without it having to be some kind of self-inflicted wound. Then again, I didn’t see how my habit could have done this to my entire body. After all, if it really was from this, why hadn’t it happened to anybody else? I don’t remember the warning label saying “Too much of this stuff will cause your body to shrink and doctors won’t believe you when it happens.” Still, this thought haunted me deeply and weighed heavily on my mind.

When I told Amy about my fear that it was from chewing tobacco, she said that if it was somehow from that, there was no way I could have known that such a thing would happen to me. When I told the doctors about my tobacco use, they scoffed and dismissed this outright as well. This wasn’t very reassuring, however, because these were the same geniuses who were telling me nothing had even happened to my body.

These were also the same crack doctors who were now telling me that what I really needed to do was see a psychiatrist. I cannot express how infuriating this was. At first I had foolishly thought that the doctors would all want to have a crack at me in order to unravel this medical enigma. Nope, they all just told me I was delusional instead. They were now treating me like some drooling idiot who couldn’t even tie his own shoes because their paint-by-numbers blood tests now came back normal. They were telling me I was delusional about my body and health, as well as extremely depressed.

What in the world did I possibly have to gain by telling this tale to the doctors? Nothing. What did I have to lose? Everything. I knew very well that by saying my body had shrunk I’d be leaving myself wide open to be dismissed and labeled a crackpot by the medical community. But I was simply telling the bone truth. This was how the malady had manifested itself.

I had gone to the library and researched every known disease there was, but couldn’t find anything even close to matching what had stricken me. How could I have something that never happened to a person before? WTF? This made me feel like the lonliest person on Earth. I felt estranged from the whole human race and that I had become a Thing.  Also, since I had been adopted, my medical history was a blank as well.

But the only thing more horrifying than my illness was not being believed. This was especially true when it came to my girlfriend’s family and my father.

“He thinks he knows more than the doctors,” was my father’s refrain.

Well, I DID know more than the doctors in this case because I was the only one living in my body and knew it better than anyone else. Before the doctors shuffled me off to psychiatrists, I begged them to do a test on my skin, but they acted like such a test didn’t exist. How I wished my doubting doctors could inhabit my body for just 24 hours and then tell me this was all in my fucking head! I would’ve loved to hear their advice then on how to put up with this agony. But this was real life, not ‘Annie Hall.’

The first psychiatrist I was sent to wasted no time in telling me I was a hypochondriac. I just stared at him in disbelief as he read the definition from a textbook as if I didn’t know what a hypochondriac was, even though I supposedly was one now. I asked him what kind of a hypochondriac made a lifestyle out of chewing tobacco or hitchiked around Britain and Ireland with a tiny napsack. I just sat there and listened to his psycho-babble and thought this had to be some kind of practical joke. At any moment, I half-expected Allen Funt from ‘Candid Camera’ to jump out from behind the couch and say, “Boy, Don, we really had you going, pretending that this was all in your head, huh?” But Allen Funt never showed up, either; instead, the psychiatrist prescribed medicine that he said I should take every day unless my liver quit or I started growing a third arm in the middle of my back.

To say that my mood was low at this point would be like saying that the universe is kind of a big place. I’m reminded of something Lincoln said, that if his unhappiness could be evenly distrubuted among the world, there wouldn’t be a single happy person on Earth. But this was due to the way I felt physically. I would be the first person to admit that I had some bouts with depression, especially when my Mom died when I was 21. But at no time during these phases did I complain of being sick or of strange things happening to my body.

Now the doctors as well as the people around me were suggesting that I seek treatment in the local mental health facility. I was stunned at how quickly they had come to the conclusion that I had suddenly gone off the deep end. I had graduated high school with honors as well as with an award in History and English. I had already written a short novel, two screenplays, and had collaborated on a parody of a bad romance novel. I had recently studied acting in New York City with William Hickey. This hurt me beyond words. My girlfriend was the only one who said I didn’t belong in such a place. “If there’s anyone who can figure this out, it’s you,” my girlfriend said. Then Amy told me she wanted to show me something. “This is something I’ve kept with me since I met you.” She reached into her wallet and pulled out a little folded piece of paper, on which this was written:

cute

laid back

funny, but very intelligent

good ****

In desperation, I signed myself into this mental health facility to prove once and for all that my illness was physical, not mental. My Kafkaesque nightmare from which there was no waking was taking on a new dimension.

I wasn’t prepared for how drab and shabby this mental health place was. It was run by the county, so it was like the ‘Big Lots’ of mental health facilities. I also wasn’t prepared for the parade of unfortunate souls in this place being tortured by their own brains and body chemistry. I hadn’t been there 10 minutes when the staff had to tackle some guy, wrestle him to the ground, and restrain him while he screamed at them. Most of the other patients, however, were moving a lot slower, shuffling along like zombies. One poor girl in particular caught my attention. She was sticking out her tongue, which was blue and swollen, and moaning. I remember thinking, jeez, don’t give me whatever the fuck you gave her… This is treatment?  Just a few months ago I was sharing a stage with ‘Carrot Top’ and now I was in The Snake Pit. Just a few months ago I had let my girlfriend read the two screenplays I’d written before moving to Florida. After reading them, she took me out to dinner to tell me how good she thought they were and said to me: “I’m proud to be your girlfriend.” Now everyone was telling her that her boyfriend was nuts just thought he was physically ill. Could life be any worse?

I didn’t come across any other patient in this menagerie who was claiming to be physically ill. I feared for my own safety and tried to separate myself from the crowd by talking to the counselors about anything, the weather, the news, etc. They were the only ones there I could have a conversation with. As I talked to one of the counselors, I glanced down at his clipboard and noticed that he was looking at my name on his chart. Beside my name, this directive was written: “Do not acknowledge shrinking statements.”

This all can’t be real, I thought. What have I done to deserve this? All my life I  thought that one of the worst things in the world would be to be falsely accused of something. It was kind of a phobia of mine that I had become acutely aware of as I became a fan of Alfred Hitchcock movies. I had told the truth about what physically happened to me and I was being treated like I was psychotic. If that isn’t torture, I don’t know what is.

I was told that the psychiatrist wouldn’t be in until the next day, which meant that I’d have to spend the night in this little shop of horrors. I spent the worst night of my life in this jail tossing and turning, trying to sleep with one eye open, praying for the dawn. Just get me out of this place, I thought. When morning finally came, things looked a little better and I was relieved when it was my time to see the psychiatrist.

The psychiatrist looked like he was about 90 years old. I told him I was physically sick, not mentally ill. He said that my medical tests showed that there was nothing physically wrong with me. We argued and argued and I told him that since I had signed myself in, I was signing myself out. I wasn’t going to sit there and have my intelligence insulted. I signed myself out and left that Snake Pit with Amy waiting for me.

So began my battle with psychiatrists about my illness. The more I held my ground, the more delusional they said I was. I tried all their different medicines in the hope that it might help my mood, but all those pills ever did was make me feel physically worse. I was having to turn into Perry Mason in order to prove that I was physically ill. I had become the most miserable soul on the planet. Who has to prove they’re sick?

So many times I felt like just giving up, but I couldn’t because of a promise I had made to my dying mother. Just a day or two before she died, she told everyone in her hospital room that she wanted to talk to me alone. When we were alone, she turned to me and said: “You have to promise me that you’re a survivor. You have to promise me that you’ll survive this. Will you promise me that?”

“Yes,” I told her, never knowing how hard it was going to be to keep that promise just 3 short years later.

I knew that if my mother had been still alive, she would’ve NEVER questioned me being sick. Just knowing this made her loss that much more heartbreaking in my time of crisis. When my mother died, I lost a kindred spirit, a best friend, and a loving mother all at the same time. So many people who knew my mother told me that she was the greatest person they ever knew. I’ve said the same thing.

Needless to say, I was no longer doing stand-up comedy. Any semblence of my former life was now gone. All I could do was suffer and be disbelieved. It was hard to be funny when what had happened to me was the most unfunny thing in the world. I qualified for disability as I was in no shape to work, although I’m sure my disability was considered a mental one now that all the doctors were convinced I was in a grand delusion. I never bothered to find out why I qualified for disability because I knew it would’ve just infuriated me and made being misdiagnosed that much more insulting and infuriating. Once again, the joke was on me. It seemed as though someone up there didn’t like me.

What would have been the best Christmas of my adult life was now turned into the worst Christmas of my entire life. I thought of my first Christmas in Florida just the year before; of how my Dad had gotten mad when I brought home a tree to try to make it at least a little bit festive at our house. Ever since my Mom died, he’d said, “I don’t have any more Christmases.” We had just moved to Florida and didn’t really know anyone in the area, but I was healthy. Now, a year later, I was with a girl I loved and I couldn’t even enjoy it because I was sick. Life seemed very cruel indeed. And, I was still haunted by the possibility that I was somehow to blame for it all. I began telling Amy that she needed to be with someone who was healthy; someone who wasn’t trapped in a mysterious medical nightmare from which there seemed to be not only no answer, but no escape and no end as well.

And so winter (2 degrees cooler than summer) turned into spring and 1989 turned into 1990. The 80s were gone and so was my health, without the least bit of an explanation. Amy hung in there as long as she could, but came to my door in tears one May afternoon to tell me we were through. I couldn’t handle what had happened to me, so how could I expect anyone else to be able to deal with it? Still, it hurt so bad because I knew that she still loved me, but couldn’t deal with my situation any longer. I was a ghost of my former self and now trapped in a living death. Another piece of me died that day as I watched her walk back to her car, sobbing. She would later tell me that I was the only guy she ever cried over. Thankfully, although I didn’t know it at the time, this would not be the last time I saw or spoke with Amy.

It was 1990, I was 25, and this disease had claimed another victim: my relationship with Amy. I still couldn’t fathom how an illness that could utterly devastate my body and rob me of my life didn’t at least have the decency to kill me.

 

Categories: Uncategorized
  1. john
    March 15, 2012 at 12:31 am

    Interesting read. Random post here, and not sure how I stumbled upon this but….I remember playing wiffle ball in your back yard on nod court/harvest gold hse with colored garage door along with brian petrucci, ronnie pellegrini, jc cacopardo, and dean nelson in 1980/81. U chewed tobacco and were a heckuva player. Fun times. Wish u well.

  2. M.Gaffney
    December 15, 2011 at 2:28 pm

    Chapter 4..please..and hurry up. Wish I could pen like that.

  3. Leftside Annie
    December 11, 2011 at 2:41 pm

    I’m so sorry to read that you’re going through all of this. I can relate to a small degree. In 1979, I left my abusive husband, and I figured that I was mightily messed up in the head to have married that man in the first place.

    The very first therapist I saw (a man) told me that perhaps my husband hit me for a good reason, that I didn’t listen to him.

    I got up and walked out of that room and never looked back.

    Keep fighting – and trust yourself. Make them hear you. Sending good thoughts your way.

    ~ Kate

  4. janice murphy hartman
    December 11, 2011 at 2:07 pm

    Waiting for the end of story. Hurry.

  5. December 11, 2011 at 11:44 am

    Don: Hope you’re doing okay now, since you’ve been absent from Twitter lately.
    You’ve written three riveting accounts so far. Tough to read but riveting.
    BTW, I have a chronic pain problem that was misdiagnosed for years (combination of neck injury, degenerative neck disks and neurological issues), and was similarly hard to explain to people. Your situation sounds worse by a factor of ten.
    Looking forward to part four.

  6. December 10, 2011 at 7:51 pm

    A very sad story. However…I hesitate to tell this…uh…in spite of the tragic content, I find myself enjoying this piece very much (sorry) It’ because you blend very well a tragedy with an amusing style – rhythm, speed, suspense, humor – I even suspect you’re a professional writer – anyway I’m looking forward to the next part.

  7. December 10, 2011 at 7:18 pm

    Another great piece of heartbreaking writing. You have me on the edge of my seat, waiting for your next installment and praying that you have a happy ending to this nightmare.

    Best wishes,
    Mike

  8. NotablyNicole
    December 10, 2011 at 6:40 pm

    I can somewhat relate to your story. I do have a diagnosis, fibromyalgia. Which I had always assumed was a disease of the elderly. I now learn that there are many young and old who have this awful chronic pain illness. Sadly there are many doctors out there that do not believe in the existence of fibro and believe it’s a mental health disorder.
    I dont recall seeing what or if you’ve been diagnosed with? Hopefully you can get some answers. I found that although there is no cure, knowing what I had was helpful because I could stop being in denial or blaming myself.
    Best to you.

  1. December 10, 2011 at 11:08 pm
  2. December 10, 2011 at 9:53 pm

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