By Don Millard
because my vehicle was only slightly more roadworthy than the one John Candy was driving near the end of ‘Planes, Trains & Automobiles.’ The hood was held down by a coat hanger, and the windshield was smashed, but hey, the radio worked great. It was just the kind of a vehicle you’d want for a 1300 mile journey.
drawing turned out pretty well. I now knew that this evil disease hadn’t also taken my artistic talent from me! I can’t express what a victory that was to me. Also, and just as important, the act of drawing had freed me from my body for a few glorious hours and I felt like I was me again. Thank you, Vincent.
By Don Millard
There is no prosthesis for a broken heart.
As the poet Edna St. Vincent Millay observed, “A heart once broken is a heart no more.” T.E. Kalem noted that “the heart is the only broken instrument
that works.” I now wished with all my heart that my heart had stopped beating in the emergency room in September 1989. At least I would’ve died with my love at my side. There would’ve been no tearful, heartbreaking goodbye in the driveway almost a year later. It would have been better for everyone involved, especially me.
Amy didn’t break my heart. Life did. My heart had been broken by the very thing that had broken my body. It was a twofer. That’s what made it so hard to even try to pick up the pieces and go on. After all, what had come between Amy and me would also doom any future relationship with a girl. How do you move on from that? How could I expect any other girl to put up with this medical nightmare when Amy couldn’t? This disease had changed the whole trajectory of my life. Maybe Amy and I would’ve married and been very happy, or maybe we would’ve killed each other over meatloaf. Who knows? The point is we never got the chance to find out.
That’s what broke my heart.
When all you’re doing is suffering, how is that living, anyway? I simply didn’t have a clue how to proceed in the next few months that followed and couldn’t really find any reasons why I should. I especially enjoyed getting helpful advice from healthy people on how to deal with a chronic illness that had robbed me of my life. The same people uttering these platitudes, telling me to keep my chin up had absolutely no idea of the extent of my suffering and this just made it worse. But, fortunately, life had come up with a sly way of making me forget about my own mortality: my father was diagnosed with throat cancer. This disease was definitely from tobacco. He had been a heavy smoker all his life. Growing up, we always had to go to the Drive-In if we wanted to see a movie so my Dad could smoke. Trying to watch the double feature through our nicotine windshield was always a challenge.
As I’ve said, my father had quit smoking in 1984, but started up again the day before my Mom died in 1986. When we moved to Florida in late 1988, he vowed to quit once and for all. But by the fall of 1990 he was still smoking and chewing nicotine gum.
As we awaited the results of his biopsy, my Dad said, “It’s probably cancer. I’ve lived about as long as I want to, anyway.”
It was cancer, of course. Luckily, the H. Lee Moffitt Cancer Institute, one of the top cancer centers in America, was only two and a half hours away in Tampa. It was here that my father underwent surgery, as a total laryngectomy was required to remove the tumor. After the lengthy operation, when he was awake and in the recovery room, I was allowed to see him. He was pale and had obviously been through hell. As I walked over to him, he was writing something on a yellow legal pad. The words read: “I Love You.”
My Dad would stay in the hospital for 10 days and they gave him a prosthesis that allowed him to speak again. He was very brave. Still is.
I was still keeping in touch with Amy’s mom, as she’d become like a second mother to me despite the nightmare and all that had happened. When I told her of my Dad’s cancer and operation, she said: “Why didn’t you tell us? We would’ve went up there with you.”
It was nearly Christmas when I heard about an amateur comedy contest that was to be held at the top comedy club in town. This was the very same club that I dreamed of working in when I first moved to Florida. It was one of the main reasons I had come to Florida. I had told my friends up North that I was going to work in that club one day. This club was an “A” club that booked some of the biggest names in stand-up comedy and they had never before opened their club up to amateurs. I had dropped off a cassette tape of my comedy to the owner a month or two before I got sick, but he had never gotten back to me about it. Me doing comedy in this club was the dream Amy and I shared. After I got sick, this was just another dream that got shattered.
I hadn’t done any stand-up comedy since my frantic trip to the emergency room, but I decided to try it again and see what happened. I had nothing to lose, since I had lost everything already. There were about 20 contestants. When it was my turn to go up, I did the best I could. My delivery was off and my mind was foggy, but I did get some laughs and even applause at the end. When the winners were announced, I came in second place. First place was the only prize in that the winning amateur got to be the opening comedian for a week. But afterward, however, the owner of the club, who had also been one of the judges, came up tome and said he thought I should have won. He then offered me the job of being the house MC for the club on the spot. The working week would be every night except Monday, when the club was closed. Monday was the day the comics usually arrived and were put up a local condo near the club.
So there it was… The dream I’d shared with Amy was now just handed to me like that. The dream job that I couldn’t enjoy now or half do properly was all mine. Life always seems to take away something from you before allowing something good to happen. It’s a very bad exchange rate if you ask me.
But I decided to take the job anyway and try to make the best of it. I began right before the new year and got to meet and work with comics such as Paula Poundstone, Rita Rudner, Steve Harvey, Billy Gardell, Ben Creed, Tim Allen, and the greatest comedian you may have never heard of: Frankie Bastille. Sick and all, it was still inspiring to meet and hang out with creative people. My kind of people. It was also a good way to meet girls, and I even had a few flings that just made me lonelier. It was here that I learned that if I treated a girl like crap, I couldn’t get rid of her. As Bill Hicks sang, chicks dig jerks. I even had some fun as well as some crazy adventures, including leaving a then unknown Jon Stewart stranded at the airport after Tim Allen told me I shouldn’t have to pick up the comics since I was part of the show. Rather than picking Stewart up at the airport, I partied with my friend at ‘Fridays.’ The next day, right before the show, Jon Stewart came up to me and said, “Hey, where were you yesterday? I was at the airport for an hour before I took a cab to the condo.” I remember being at ‘Perkins’ with Tim Allen and him telling us all about the new show he was going to have and how he was going to have a next door neighbor but you would never see his face.
On Valentine’s Day, of all days, Amy’s mom came to see me and the show, bringing with her a whole table of nurses. When she first saw me, she said “Amy says hi.” Amy had moved to Tampa a few months before I became the MC at the club. I was glad that she had come, but I wished she would’ve picked a different day. Any other day.
During each show, we always had a shot special that I had to promote before bringing up the headlining comedian. Since it was Valentine’s Day, I proposed a toast as I got back on stage:
“To the ladies: May they live as long as we do.”
This got a good laugh, and it was the funniest thing I’d said in more than a year.
After the show, I could see and hear Amy’s mom talking with the opening comedian, Billy Gardell (now Mike in CBS’ “Mike & Molly”). “Isn’t he a nice young man?” she was saying. “Him and my daughter used to date.”
“Yeah, I know,” replied Gardell. “I could hear the heartbreak in his voice.”
It was now 1991 and I had stumbled onto a book about a mysterious new illness called Chronic Fatigue Syndrome.This is one of the most poorly named diseases of all time, as it just makes people think that you just suffer from being tired. It’s also usually followed by someone who isn’t stricken with it to exclaim, “I’m tired all the time, too!” I’d first became aware of this malady about two years ago. Amy had called me one morning about a month into my illness and told me to write down the name of this disease because this is what she thought I had. This was, of course, before the shrinking and the strange skin sensations began. Still, as I discovered in this book, there were a number of other striking similarities between this malady and what had attacked me.
So, armed with this book, I went back to my family doctor and told of him of the similarities between my illness and Chronic Fatigue Syndrome. He did a blood test for the Epstein-Barr virus and it came back positive.This is the same virus that causes mono. At the time, this was thought to be the diagnostic test for CFS, but this is no longer the case. There is no one test for Chronic Fatigue Syndrome. My doctor informed me that I did in fact have Chronic Fatigue Syndrome. He told me not to run to the health food store and buy a bunch of herbs, but to just take a multi-vitamin once a day.
“Sorry we took so long,” he told me.
Sorry we took so long? That’s all you have to say? Sorry we took so long? This coming from the same guy who told me and everyone around me how I was delusional about my health and body?
I felt like punching him in the mouth and still wish I had. Maybe next time don’t be so quick to disbelieve someone when they say they’re sick, asshole. I hope that someday some thing’s wrong with him and no one believes him.
I knew that this diagnosis wasn’t really the answer by any means, but it was enough to show that this wasn’t a delusion. It was enough for me to hang onto and to go about clearing my name.
A few days after my diagnosis, I stopped in to see Amy’s mom and told her the news. While I was talking to her, I noticed that she still had a picture of me in a frame among the photographs in her living room.
“God, you were right, sweetheart,” she said. “You should be a doctor.”
This took away a little bit of the emotional trauma of not being believed about being sick. I felt like I’d been falsely accused of a crime for nearly 3 years and had finally been proven innocent. But I still knew that I was dealing with something much more horrific and apparently unprecedented in the annals of medicine. I also still worried that I had caused it, somehow. God, how this thought still haunted me.
I had now been working at the club for nearly eight months and it had been a great experience, despite my health situation. My foggy brain kept me from really developing any new material and that was very frustrating to say the least. There were also some strange doings afoot in the club itself. These strange circumstances corresponded seemed to begin when the owner of the club took on a new business partner, the Greek guy who owned a restaurant in the same plaza. He was a gruff, nasty little man whose gold chains around his neck weighed more than he did. He viewed this once great club as a restaurant rather than a comedy club and treated the comics like dirt. He was the only dirt there that I saw. Some of the checks to the comics were bouncing and it seemed like they were purposely trying to go out of business.
It was right about at this time that a totally unexpected and welcome offer came my way out of the blue. My best friend in Connecticut, Pete, called me one night to tell me he had gotten a DUI and was going to lose his driver’s license for 90 days. Believe it or not, just a few months before, his parents and older brother had bought a house and moved to the very same town in Florida that we had moved to. My friend didn’t want his parents to know that he had got busted and was about to lose his license (I would later learn I didn’t have a license, either, but that’s another story). He also knew how much I had come to detest Florida. Florida is an old Spanish word that means tee shirt shop. Pete wanted to know if I’d be interested in coming back to Connecticut to drive him back and forth to work. In return, I could live rent free with him in the shoebox mobile home him and his folks and older brother had grown up in. Would I be interested in doing something like that? Why, YES! Sounded good to me!
I was going home, at least for a while.
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.
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:
funny, but very intelligent
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.
By Don Millard
So, now the doctors were telling me I was just fine, completely ignoring that this crisis all began with a dramatic trip to the ER and multiple test
abnormalities that had nothing to do with my mind. Despite my now normal blood test results, I still felt sick and knew something was terribly wrong. But nothing, NOTHING could have prepared me for what life had whipped up for me next in this medical nightmare. If it hadn’t happened to me personally, I probably wouldn’t have believed it, either. For me, what happened next was the ultimate example of truth being stranger than fiction.
As I was trying to describe how sick I felt to the doctor, he asked my girlfriend:
“What have you noticed?”
“His color is just awful. It’s not the same as when I first met him.”
“Hmm…” replied the doctor.
It was around this same time that my medical doctors started telling me I should maybe see a psychiatrist. WTF? I was 24, with a girlfriend and a budding career. A psychiatrist? Did my thoughts cause me to have blood in my stool? A low-grade fever? A high white blood cell count? The last thing in the world I wanted to do was go to a damn doctor. Yes, doc, instead of making love to my girlfriend or doing comedy, I’d much rather drag her here with me to go to see doctors who tell me I’m not even sick! Isn’t that every 24 year old guy’s idea of a good time?
The doctors were telling me I seemed depressed. Ya think? What other mood should I have been in? How would YOU react if you knew you were sick and you were being told it was all in your head? Would you dance a jig? Raise the roof? Have a block party?
The doctors didn’t know me before I was sick. They didn’t know my personality–all they knew about me was me in my present sick and miserable form.
Meanwhile, my girlfriend’s Mom, the nurse, told me that if I really was sick, my illness would reveal itself sooner or later.
She was right.
Are you sitting down?
And then it happened… To my absolute horror and disbelief, my entire body started SHRINKING. Yes, SHRINKING. I couldn’t believe it, either. I would’ve never, never believed that such a thing could happen to a person, much less that it would happen to me! But, as far-fetched as this sounds, if YOUR body started shrinking, wouldn’t YOU notice? We are all experts on our own body because we’re the only ones living in it. You don’t have to have an advanced degree in medicine or be a Mensa member to notice this.
Now I was sure I was dying.
Every day, for about a week, my body, both bone and tissue, shrank. To say this was terrifying is the understatement of the century. During this horrible time, my girlfriend said: “Your face is getting thinner and your butt’s going away.” Was this all in her head, too?
Other than myself, Amy knew my body better than anyone else–including the damn doctors who’d never known me before this catastrophe.
Panicked, I tried to eat even more than usual, thinking that maybe this would stave off the shrinking. It didn’t.
As horrifying as this was, the true torture was what was happening to my skin. It was as if I was losing all normal sensation and feeling in my skin–not numbness, but a major change, especially in my face. It was like my skin was dying, leaving my soul or spirit trapped inside a dead body. There are really no words to describe how terrifying this was. I felt like I was just a pair of eyes and that I was suspended between life and death; too sick to have a life but not sick enough to die. It was like my own private Purgatory.
It was also around this time that I had the most vivid dream of my life. In my dream I was in St. Mary’s Church in Clinton, Connecticut, the church my Mom and I had attended, or rather, the church my Mom dragged me to. My Mother had died of cancer in 1986 at the age of 56. But in this dream she was very much alive and was walking in the aisle away from the altar with her hand outstretched. I was walking down the aisle toward her with my hand outstretched as well. It all seemed to be in slow motion as we came closer and closer to one another, and, just as our hands were about to touch, I woke up. This didn’t have the feel of an ordinary dream to put it mildly. I took some comfort from the dream, even though I’m agnostic.
“What is happening to me?” I screamed, as Amy tried to comfort me.
And then, after about a week, the shrinking stopped just as suddenly and mysteriously as it had begun, leaving me a shell of my former self in more ways than one and effectively killing me at the age of 24. Twenty four. The same age as James Dean when he died. Dean died in September and my illness had struck me in September.
I couldn’t believe that this sickness could ravage my body so completely and yet leave what was left of me to suffer on and in mourning for the body and life I’d now lost. I knew right then and there that I’d never have another normal day in my life.
It had been only roughly a month since my frantic ride to the ER and now it was all this.
The only good thing–if you can call it that–was that I now knew with absolute certainty that my illness was a physical one and not the product of a fevered brain or a figment of my imagination. No, it was all too horrible and all too real.
To demonstrate to my girlfriend what had happened to me, I put on a pair of pants she had got for me before I was sick. They had fit perfectly when I first wore them a few months before. Now when I put them on, they were noticeably too long and came down over my feet. So, either I had shrunk or my pants grew. I’ll let you decide.
If my body had just shrunk and nothing else, it wouldn’t have been so bad. Bizarre and upsetting, yes, but I could have dealt with it. It was, however, the accompanying changes to my skin that made my condition so agonizing and intolerable. My skin has always been my number one complaint since my body shrank. It’s like being entombed within your own body.
Now I REALLY have something to tell the doctors about, I thought. But what happened next was, for me, just as unbelievable as what had just transpired within my body.
When I went back to the doctors and told them how my body had shrunk, they simply and categorically said that this could not occur. They looked at me like I was saying the Earth was being overrun by giant pink elephants. They all told me that such a thing was impossible and that I was just imagining it all! I knew that this would make me sound crazy, but I was simply reporting what had taken place within my body. It would’ve never occurred to me to say this happened to me unless it truly had. I was in a state of stunned disbelief myself. Just because something hasn’t happened doesn’t mean it CAN’T happen. Forty years ago AIDS couldn’t happen, either. I wanted to strangle these doctors. A scant two months before I was getting laughs and applause from an audience; now I was being treated like a basket case who didn’t know his own body; instead of cracking people up, I was being told I was cracking up. It was all like a dark cosmic joke–and the joke was on me.
If all of this was just in my head, I would’ve never been rushed to the ER to start with. In the beginning, there was no doubt that there was a physical disturbance going in my BODY. All my life people had told me how intelligent and perceptive I was. Now, suddenly, I was delusional in the eyes of my doctors; even my girlfriend’s family and my own father started to treat me like I didn’t know what I was talking about. It’s impossible to describe how much this hurt.
I even brought pictures with me; pictures of myself from just a year ago when I healthy and wasn’t complaining of being sick or strange things happening to my body. The doctors would take a very quick glance at the photos and then say, “It looks like you’ve lost some weight.”
When I told them that my weight was the same as it had been when I was healthy, they just stared at me and said nothing.
I felt like I had crossed over into The Twilight Zone and that there was no way in hell that this could be reality. But Rod Serling never showed up to explain it all to me.
No one wants to be sick. At 24, who says they’re sick unless they’re sick? Not only was I having to cope with being sick in a strange and terrifying way, I was also having to cope with not being believed. This is a hell I would not wish on my worst enemy. Except for maybe Glenn Beck.
This is awful to say, but I started to envy people in wheelchairs–not because I thought I had it worse than they did–but because no one was questioning their plight or the severity of their condition. No one was telling them to “snap out of it” or that it was all in their head. No one was questioning their character.
But the worst part about this whole nightmare was my girlfriend saying, “Don’t I make you happy?” This cut me to the core because even one tenth of what she was doing for me would’ve made me happy under normal circumstances. I would have to invent a new language to even remotely express how much this broke my heart.
By Don Millard
It was 1989 when it all began and I was 24 years old.
I had a great girlfriend and was pursuing my dream of doing stand-up comedy in Florida. It was a good time to be me and I wouldn’t have traded places with anyone in the world. Little did I know that very soon I’d learn first hand that there are fates worse than death.
Driving home late at night from a show, a strange and unsettling thought crept across my mind. As I looked at my reflection in the rear view mirror, I heard myself say “I’m gonna die in some mysterious way.”
Whoa. Where the hell did that come from? As one who’d always had great health, I was taken aback by this, but chalked it up to weird thoughts one can have on a lonely stretch of road late at night. Nothing in my wildest dreams or strangest nightmares could have prepared me for just how accurate this eerie roadside prediction would turn out to be. It would make a Stephen King novel look like ‘Pippy Longstocking’.
It couldn’t have been more than a month or two later that I started to feel severely fatigued and washed out. I remember the date as September 1 as the day I started to feel sick. After about two weeks of feeling bad, I was laying listlessly on the couch at the condo my girlfriend shared with her mom and sister. Suddenly I got up and walked over to my girlfriend’s mom, who was a nurse, and said to her:
“I really don’t feel well.”
The words had barely escaped my lips when out of the blue my heart began beating so fast I was sure I was going to drop dead right there. My girlfriend’s mom quickly listened to my heart and took my blood pressure. Throwing off her stethoscope, she said: “Get him in the car and take him to the emergency room, Amy. His blood pressure is higher than my blood pressure patients!”
As my girlfriend raced me to the hospital, I was sure I’d never live to see the inside of it. In between gasps for air, I told her that I loved her. We were already planning a life together. Had I known what was in store for me, I would’ve chosen death a thousand times over. Gladly.
“Just hold on,” she said, running a red light.
I was rushed into a room in the ER where a team of doctors started working on me, poking this, prodding that, drawing blood. As they were hooking me up to an EKG machine, my heart rate began to slow down a bit and slightly resemble a survivable rhythm.
“I knew there was something wrong,” my girlfriend said to her mom and sister, who had just arrived. “He’s never sick.”
As I lay there awaiting a verdict, I worried that maybe this was AIDS. I had confided this fear to my girlfriend a week or so earlier and she had said calmly “Then we’ll die together.”
One of my doctors came back into the room and said the results of my tests were starting to come in and there were some irregularities. He told me that I was running a low-grade fever, my white blood cell count was up, and that there was blood in my stool. Beyond that, they couldn’t pinpoint a diagnosis. The EKG had come out normal.
“What about AIDS?” I asked.
“No, there doesn’t seem to be any sign of that,” replied the doctor.
When I was being discharged, I was told to have these same blood tests done again in about a week with my family doctor. I didn’t have a family doctor as I was never sick and didn’t go to doctors for anything. But I knew now that there was something terribly wrong.
So, about a week later I had the same blood tests done and, incredibly, everything came back normal. I simply couldn’t believe it. I was feeling even worse and now my tests were normal? WTF. But worst of all, I was now being told that I wasn’t even sick!
At 24, I didn’t know there were worse things than dying. But life was about to school me and conduct a master class in this cruel truth.
OTOOLEFAN has recently become obsessed with board games and we aren’t talking Monopoly or Life. No, we’re talking about games that can only be found by googling “games your girlfriend will never play with you”. He finds it hard to believe I’m not burning with excitement about playing ‘Broadside’ a game loosely based on the War of 1812.
And he isn’t content to search the internet for games quietly. No, he must show me every game accompanied by an oral dissertation on the complexities of each one.
It started out innocently enough with Chess. We now have 4 Chess sets. I don’t play Chess.
Then Scrabble. I beat him badly. We haven’t played that again.
Then after hearing him talk about this game called ‘1960 The Making Of The President’ for weeks, I ordered it from eBay. It took a couple of weeks to get here, and even longer to learn how to play. It was a pretty good sized box, heavy, with a text book of instructions. The board, a US map, covered about ¾ of the dining table and once it was set up with all the markers, cubes, momentum thingys, etc, there was no moving it. It was so complex, that it took us almost 2 weeks to play it the first time. Oh yeah, I was Nixon. Blah.
He loved it, I liked it okay. But that’s what love is, right?
But now, revenge is mine for it is that magical time of year that I turn into the Christmas Tree Nazi. I know it’s only Halloween and not yet Thanksgiving, but one must prepare. Understand that I am already kind of a decorating Nazi, bit anal there, I am a Virgo after all. But at Christmas, I am fierce in my determination to create the perfectly decorated tree.
Complicating things, this year for the first time, I have abandoned the standard one big tree for three Alpine trees in different sizes. And apparently, the only suitable style for Alpine trees is Primitive Country. I have nothing Primitive Country.
Last year I let him participate in the tree decorating and it gave me heart palpitations. He kept muttering something about my “penguins facing due North”. He says these trees will look like they’re decorated in Early Blair Witch.
So while he is scouring the internet for a game about Andrew Jackson and the Bank War, I am tearing up eBay looking for CHEAP primitive tree ornaments and raffia. He shows me a game, I show him a snowman. He tells me about The American Heritage Battleship Game and I explain to him that we will not be using tinsel this year.
This is communication, this is understanding.
This is love between Game Boy and Christmas Tree Nazi Girl.