I think they should name this after me. Lou Gherig has a disease named after him; why can’t I have this one named after me? Yeah, I haven’t played in the majors and I’m far from a national hero, but a rare disorder needs a shorter, catchier name. We can just go with my last name, even. Simon’s Disease. Or Simon’s Syndrome. Or Simon’s Disorder. I can’t remember what the difference between them is anymore. I can’t remember a lot of things anymore.
Anyway, I think the fewer people that have a disease or syndrome, the longer the name is. I can’t even spell or pronounce mine, but it’s three words and each word has about fifteen letters. So it really needs a shorter name like mine. And, hell, if dead people can get laws named after them, then this living one should get a disease named after her, if only as compensation.
I think I should get something really good for being a guinea pig. There. I said it.
Sure, I have free room and food now and they actually pay me a monthly allowance so I can pay off my medical bills, but that’s not much considering I’m constantly under the glass, being poked and prodded and measured, having God-knows-what put into my body via pills, syrups, and syringes. I deserve something really good for trying to help other people with this illness because, in the end, I’m sure as hell not helping me.
And the first person who runs their mouth about how I could have done something else, find a way to wedge yourself into my position and look down the gun barrel I was looking down.
This didn’t start out debilitating. It wasn’t a bomb dropped on my health, burning everything to the ground. I wrote off so many of the symptoms. My shoulders started hurting, then my knees. I thought it was because we’d been doing a lot of heavy lifting at work and I was out of shape. Then, I couldn’t stop being tired. I thought I wasn’t getting enough sleep. My jaw started to hurt. I thought I slept wrong.
But then the symptoms got weirder and I couldn’t write them off with excuses and I couldn’t ignore them. I had trouble thinking, couldn’t concentrate. My feet swelled and dissipated for no reason. My jaw just by my ear swelled, but only on the right side. It was weird and unexplainable, but at the time, I didn’t really care if I got an explanation. An explanation meant going to the doctor and I couldn’t afford that. I just kept moving and hoped it’d go away and never come back.
Hope in one hand, right?
I never missed a day of work. It was a crap job in retail and no one else minded calling in sick, but good employees get hassled for that sort of thing. The place falls apart when we don’t show up. Plus, I only had five paid sick days a year. I didn’t want to waste one on what was probably nothing (because that’s what I told myself every day in the beginning; it’s nothing). I didn’t want to fight with HR for two months to get paid for that sick day, either. I didn’t feel that bad. I could still work, so I did and I ignored everything the best I could.
I put off going to the doctor as long as I could. I hate the doctor, hate the hassle, hate the cost. I hate being told that the cure to all of my problems would be to lose weight. They told me that when I was 240. They told me that when I was 200. They told me that when I was 180. It didn’t matter. I wasn’t a size zero, so clearly all of my troubles were because my pants size was in the double digits. Worst of all, I hate spending the money (because the oh-so-great health insurance I had through work was bare necessities; what it didn’t cover outnumbered the things that it did) only to be told what I already knew, what I’d already spent three months telling myself.
The first time I went to the doctor was the first day of my paid vacation. Five years in and I had five whole days. I couldn’t afford to go anywhere, but I could at least sit at home and get paid for it. I thought that I’d go to the doctor first thing, be told I was fat and it was nothing and get everything out of the way and spend the next four days resting on my couch, restoring my soul with an endless run of ‘80s movies.
But it wasn’t just one doctor’s appointment. For the first time in my adult life, my doctor didn’t tell me it was nothing. He didn’t tell me to lose weight. Instead, he listened to my symptoms with a most perplexed look on his face and then scheduled me for a bunch of blood tests. Before I could ask just how much all of this was going to cost me (because nothing he said sounded like anything my insurance would cover), a nurse swooped in and escorted me to a different room down the hall where a guy auditioning for Dracula drained me of five vials of blood.
I’d like to say that I left that doctor’s appointment feeling scared, feeling like the barrel of that gun had already been leveled at my head, but in reality, I was just sore and agitated and drained. Drained of blood, emotions, and, most likely, money.
All I could think when I walked across the parking lot to my car that day with the miserable August heat and humidity rising up from the blacktop was that they’d damn well better come up with a cause and a cure before my vacation was up.
My hopes that this whole sick business would be wrapped up in one doctor’s appointment was shattered the third day of my vacation. They needed more blood for more tests because the tests they’d done revealed no answers.
It wouldn’t be solved in two appointments. It wouldn’t be solved in ten. I guess if you want to get technical, it’ll never really be solved all the way, if you’re counting a cure. There is no cure. But I’m getting ahead of myself. The point is that I went to the doctor a lot after that first appointment, always scheduling them for my days off because, well, now with all of the medical bills, I really couldn’t afford to take a day off.
Meanwhile, the doctors kept trying find out exactly what my trouble was and while they did, they gave me an array of medications in an attempt to see if any of them worked. Maybe if one of them did, then they could narrow down what this mystery illness was.
The pills didn’t help. I kept getting new symptoms. I got heart burn when I’d never had heart burn before in my life. Then the rest of my digestive system went into business for itself and there was no telling from one day to the next, one hour to the next, what it might do. My urine took on a greenish tint for a while. My liver got very tender. Was it more of the mystery illness or was it the side effects from the drugs the doctors were giving me? It was so hard to tell. The only thing I could say for certain was that the original symptoms remained and that it was getting harder and harder to do my job. But I showed up and did the best I could.
I had to. It seemed like every test, every drug, every doctor wasn’t covered by my insurance, and if by some miracle it was covered, it definitely didn’t cover all of it. More of my paycheck went to pay medical bills than to pay rent. I looked at every one of those bills with their list of fees. It didn’t improve my health or my mood. Every incidental they charged me for, needles, bandages, cotton, alcohol, I could have bought in bulk at the crap store I worked at, bought it all and got every single item for less than what they charged me for one, even without using my discount. And a label reading fee? Really? I thought reading was part of the job requirement. I didn’t realize they charged extra for it. But they do. And reading isn’t always covered by the insurance. That’s something they didn’t mention when we all started learning back in pre-school.
Just as I got to my breaking point, when I was so tired I could cry and my last nerve was frayed and I’d come to the end of my rope and found it tied in a noose, I got a diagnosis. Finally. An answer. A name! What I had was real and it had a name! Wonderful!
The relief was short lived, of course. I’d never heard of the syndrome and I was in good company because very few doctors had either. All I heard was “no cure” and “learn to live with it”. And to live with it would be expensive. The pills, the quantity and quality that it would take to even approach functioning normally didn’t come cheap.
Terrific. Life was a bubbling mess of vile soup on a stove, but at least now I knew what flavor it was. I could deal with that. I was sure I could.
Until I couldn’t.
Throughout the whole ordeal of getting diagnosed and in the early aftermath of getting diagnosed, my family and friends were supportive as much as they could be without getting too involved. What I mean is that they would listen to my complaints with a sympathetic ear when they had the time and they’d offer to help out by cooking or cleaning for me when they had the time, but they didn’t often have the time because, well, they had lives, too. Most of my friends were typical, married with children. My single friends were busy trying to achieve that typical status. And my family loved me, of course, but they’d never been good dealing with anything they considered messy; and anything that wasn’t the best of circumstances or couldn’t easily be glossed over was considered messy. Me being sick was just about as messy as it could get. So they’d accept sympathy from others about me being sick, but I was sort of left on my own to actually deal with being sick.
And my being sick did not noticeably improve just because my condition now had a name and a specified regime of pills whose only job was to lessen my symptoms, not obliterate them or cure me.
I worked through as much of it as I could. I still forced myself to go in for every shift I was scheduled. I can’t deny that my work suffered. Sometimes the symptoms were too much and I’d have to leave early. Sometimes the side-effects were too much and I’d have to leave early. I couldn’t move as fast as I used to be able to. My concentration and memory hadn’t improved all that much so I was still getting side-tracked too easily or forgetting things I should know. It was frustrating for me, it was frustrating for the customers, it was frustrating for my co-workers, it was frustrating for management.
I will give some credit where it’s due; management didn’t ditch me at the first sign of trouble. They tried to be understanding. They moved me to a department with less to do and fewer customers needing attention. They didn’t automatically cut my hours (and therefore cut my insurance). They kept scheduling me knowing that they’d probably need someone to cover for me at least a few days a week. They did try.
Patience is not infinite, though.
Three years after that first symptom appeared, with medical bills stacked a foot high on my kitchen table in my crappy little apartment, I was fired for missing too much work and for being unreliable.
I walked out of that store without health insurance, a steady paycheck, too many bills to pay, and absolutely no hope left.
Getting a new job with my condition was so impossible even the most positive motivational speaker couldn’t tell me that it wasn’t and do it convincingly. Without a job I had no way to pay for health insurance, not even with the all of the legal upgrades about availability and cost and whatever. I could try to get on Medicaid, but the process was complicated and slow and I’d probably be dead by the time the paperwork went through and they officially denied me for whatever reason they could come up with. Even if I did survive the application process and was approved, I’d then just be another freeloader living off the government, the kinds of people I’d read about in all of the memes my relatives and conservative friends like to post on social media. My only hope left was to make one of those donation accounts and hope people would feel sorry enough for me to give me money. I wasn’t confident enough to think that my sob story of dying from a rare disorder would even stand out from the pack, there are so many of those kinds of donation drives now. I couldn’t rely on the kindness of the people who knew me (remember, they all had their own lives and those lives cost money and they’d already reached their religion-mandated quota of helping people, but they’d pray for me) and I couldn’t rely on the kindness of strangers.
There’s never enough kindness to go around.
Now, tell me, people who know better than me, what would you have done? You’re at the end of your rope. Are you going to put your head in that noose? Tell me true. What would you have done?
My self-esteem had already gone ten rounds with King Kong Bundy and getting fired and losing my health insurance was the knockout punch. I was down for the count. It couldn’t be said in any plainer language that there was a price on my life and I couldn’t afford to pay it.
I wasn’t worth saving.
I should have died right there. Laid down and turned to dust. Thought about it, just chucking in the towel so to speak, and offing myself, leaving my survivors to bitch about the mess I’d leave for them to clean up because all that would be in my will would be debts. As many pills as I had crammed onto my kitchen counter, as many pills as I took in a day, I probably could have swallowed them all and that would have done the trick. Even if they weren’t supposed to kill me, no inherent risk of an overdose because I took one or two extra, I think that combination in that quantity would have killed me just because nobody should take that many pills at once.
That’s not a sympathy bid, that’s the truth. That’s one of the bullets I saw when I looked down the barrel of that gun. My name wasn’t on that bullet yet, but, baby, it was loaded.
Suicide takes commitment (at least for a moment) and I hadn’t quite worked myself up to that yet. I had enough pills to get me through three months. I had enough money to keep me in my apartment for two. I’d wait until the very last minute before I did anything so definitive as going to sleep and not waking up.
Instead, I spent my time looking for alternatives.
I looked for ways to make money from home. I started taking online surveys and testing websites. It didn’t come close to what I had been making at my retail job (which was barely a living wage despite all of the time I’d been there), but it still counted as money. I did end up relenting and putting up one of those donation sites. The kindness of strangers (I never saw a familiar name donate) was little, but appreciated. Whatever money I could make was more money than I had and that’s how I looked at it.
I also looked for alternative treatments. Once the meds ran out, I would be done. I was gobbling over five hundred dollars-worth of pills every month. My copay on them was over a hundred when I had insurance. I couldn’t afford the meds without a job or without insurance. So there had to be other, cheaper ways I could treat this disorder.
It was during one of these alternative treatment searches that I found -or thought I found- my saving grace.
A small group of doctors were looking for people with my illness to be part of a study in regards to finding a cure. I emailed them after reading just that.
“This syndrome cost me my job and I’ve got no health insurance,” I wrote, “so, I would love to be your guinea pig. My life is apparently worthless and I’ve got nothing left to lose. You need a real rat and I need a reason. Never mind morals and ethics. There’s nothing unethical about a person in their right mind trying to do good and help others. I’m willing to be subjected to whatever you have to do. Think of the progress you could make with freedom like that! Think of all the people you could help, could save, people like me that have nothing left to live for. The needs of the man, etc. I want to do this. I’m going to suffer anyway. I might as well do it for a good reason.”
I sent it off with only a quick re-read and expecting no more response than a form survey to fill out about my condition to see whether or not I qualify, the nice doctors carefully skirting the crazy desperation aspect of my email.
But I didn’t. I got a real response. Real hope.
The email contained generic information about the research and what it hoped to accomplish (it reminded me of the “mission statement” we had at my retail job) and went on to suggest that since I had no job and no insurance that I could possibly be “hosted” for the duration of the research. I probably read that one sentence a million times. Hosted meant that I wouldn’t have to pay rent or utilities. Hosted meant that I wouldn’t have to worry about buying food (diet was part of the research anyway). Hosted meant that I could still do my “work from home” stuff to make money without having to worry about whether or not I had a home to work from.
It sounded perfect. A dream come true.
Oh, but be careful what you wish for.
The research was being done in Indianapolis, three hours away from where I lived at the time. I drove to the interview worrying over every little detail of every potential question I could think of being asked. I had my medical records. There was no question that medically I was suitable for their research. But I also had my financials. I wanted to prove to them that my straits were dire enough for them to host me for the duration of the research. I was desperate for that kind of support.
I’d never been to Indianapolis before, just around it while trying to get to other destinations. I drove to the address given to me via email by the doctors I’d be talking to, Dr. Rachel Campbell and Dr. Trevor Van Dyke, and was a little apprehensive as I pulled into the parking lot. The location was as far away from what I’d think research doctors would be set up in as possible. The windowless, concrete building covered in flaking white paint was situated like an island in the parking lot of a dying strip mall in a questionable part of town. Apparently, the economy in this section of Indianapolis had tanked harder than other places and the only survivors in this little commerce section were a grocery store, a TJ Maxx, and an adult store. The other seven or eight shops all had “For Lease” signs in the windows.
I parked in front of the building (I have no idea what it was supposed to have been in a previous life) and double-checked the locks on my car doors, giving a thought that maybe this was just a set-up to rob or murder me or both. But considering the alternative, I had to risk it. I gave myself a quick pep-talk, took a deep breath, got out of my car, crossed the broken asphalt, and walked through the door to meet my fate.
My fate, such that it was, took the form of Dr. Rachel Campbell and Dr. Trevor Van Dyke. Dr. Campbell to this day reminds me of a classic plump grandmother if classic plump grandmothers wore a doctor’s coat and jabbed people with needles. She looks like she should smell like cookies, but she doesn’t. She always smells like cucumber-melon scented sanitizer, which I can no longer stand. Dr. Van Dyke still looks like he just got his driver’s license two days ago and comes at his work the same enthusiasm as a teenager with the newly acquired freedom to drive, which sometimes makes me feel like I’m in the car with that teenaged driver.
They greeted me warmly and walked me over the well-worn mauve carpet of the lobby and down the even more worn green linoleum of a hallway to an office. There, seated in an old, but still plush chair next to Dr. Van Dyke and across the desk from Dr. Campbell, I found out most of what I was getting myself into.
“Living onsite here would actually be ideal,” Dr. Campbell said. “That way we could monitor you much more closely, your diet, your sleep, your habits. The more variables we can control, the more valuable the research towards finding a cure.”
“How did the two of you decide to pursue this area of research?” I asked. I was genuinely curious as my illness is so rare. I figured one of them had to know someone with it. Why else would they even know the illness, let alone want to get involved with it.
Instead, I was greeted with a look between Dr. Campbell and Dr. Van Dyke that at the time was just curious, but I’ve now come to recognize it as shadiness. The entire truth will not be told if I see that look between them.
It was Dr. Campbell that answered my question.
“There are many areas of medicine in dire need of attention,” she said, lifting her grandmotherly chin and looking at me with an undeniable air of confidence bordering on arrogance. “Dr. Van Dyke and I recognized the need for doctors to explore the less common areas and through a series of boring circumstances and decisions, Dr. Van Dyke and I both came together and came to this research.”
She said it with such finality that I’ve never bothered to ask anything of it further. I didn’t completely buy her answer, I don’t think I ever did, but I’m beyond caring about the motives at this point.
They showed me around the tiny facility, showing me Dr. Van Dyke’s office, the lab, the area I’d be living in if I were picked for the research. Three rooms of whatever this building had once been used for had been converted into a small apartment type thing. There was a living area/bedroom, a tiny bathroom, and a small kitchen. If this place had been in Chicago or St. Louis, I’d easily be paying more than five hundred bucks for the space, and that’s not including the utilities. It was small, but I was used to small. My own apartment wasn’t that much bigger. And this one I wouldn’t be paying rent for.
The tour ended back in Dr. Campbell’s office with a few parting words. If I was chosen, I’d move in as soon as possible and the research would begin immediately. They gave me a packet of papers that explained in further depth about the research and told me they’d call me within a week.
I drove home sweating. As much as I wanted to pull over to the side of the road and tear into that packet, I made myself wait the three hours until I was safely back in my apartment and I wouldn’t have to worry about traffic or nosy state troopers coming along to ask me what the hell I was doing just reading on the side of the interstate.
The research mission statement was clear: Dr. Campbell and Dr. Van Dyke were looking for a cure. Human patients involved in the research would be trying various methods and medications to relieve symptoms. They would also be monitoring side-effects.
Though everything seemed straight-forward, something tugged in my gut when I read over the research packet. There was something shady about this, something not quite ethical. But I ignored it. If I was willing to walk into that building in the questionable part of Indianapolis knowing the possibility that I might be robbed and/or murdered, then I should be willing to subject myself to whatever these doctors had in mind. After all, what did I have to lose?
Nothing, that’s what.
A week later, I got the call.
With a certain amount of relief and a certain amount of apprehension, I moved into that little lab apartment in Indianapolis and prepared as best I could to begin this new life, such that it is.
It was all typical at first. It started off with a lot of poking and prodding, nothing worse than what I’d gone through just to get the diagnosis. And questions. Lots of questions. I don’t think I answered more questions the entire time I was in school. There’s not an aspect of my life, health, medical history, daily activity that wasn’t inspected, dissected, and questioned again by Dr. Campbell and Dr. Van Dyke. I’ve even got a daily journal that I have to keep in the name of science. I write down how I feel, what I do, what I eat, any notable emotions. It’s my daily organ recital. That’s how I think about it. I’ve already filled one book in the time I’ve been here and I’m over half-way through my second.
When we started the meds, it was all very mild stuff. Known drugs. How does aspirin help? How do vitamins help? How about the drugs I was already on? What about this, that, and the other? That sort of thing. Then we started the combos. What about fish oil with penicillin? St. John’s wart, B-5, and Paxil? I’d follow the drug schedule for six weeks to two months. I’d jot down my findings and they’d jot down theirs. Then I’d get a few weeks off to make sure the drugs were out of my system before I started the next round.
There was nothing in those first numerous rounds that made much of any difference, no miracles to be found. As much of a cynic as I am, deep down I felt like I was owed a miracle for what I’d already been through. Which turned out to be nothing compared to what was coming.
After the usual stuff came the unusual stuff, which is where we’re at now and have been for a while.
Drugs I’d never heard of with names longer than the name of my illness that came in doses that sounded too high to not cause an instant overdose. Drugs that only popped up as “experimental” and “non-FDA approved” if I had the guts and the spelling skills to search for them on the internet. Drugs that Dr. Campbell and Dr. Van Dyke are very coy about when I ask what to expect from them. The most concrete answer they ever give me is, “We’ll have to see how it interacts with your condition.”
And boy, do they.
You’ve probably heard the list of side-effects on any given drug commercial and believe me, I’ve had them all and then some. Headaches. Dizziness. Nausea. Vomiting. Diarrhea. Constipation. Watery eyes. Dry eyes. Muscle cramps. Muscle spasms. Muscle stiffness. Muscle fatigue. Joint pain. Dry skin. Oily skin. Hives. Rash. Dry hair. Oily hair. Dandruff. Night sweats. Insomnia. Frequent urination. No urination. High blood pressure. High blood sugar. Low blood sugar. Low blood pressure. Blurred vision. Double vision. No vision.
That’s right. One of the drugs I took caused me to go blind for a while. Could not see. Woke up one morning and it was like I was looking through binoculars, my peripheral vision gone. And as the day progressed, the circle of sight just got smaller and smaller until it closed in on itself and I was left with nothing but blackness, a total dark screen. I was blind for four days until the drug worked its way out of my system and my vision restored itself. Dr. Campbell assures me that there’s no permanent damage from that little incident. Well, maybe no damage to my eyes (thank whoever’s in charge), but I can’t say the same for my sanity. There are lingering scars from the panic that ensued as a result of losing my sight. Sometimes I wake up in the middle of the night, terrified that it’s happening again. I have to turn on all of the lights in my apartment and look around for hours, look at things from every conceivable angle to convince myself that it’s not.
I get new mental scars, new hang-ups, whenever I encounter a major side-effect like that. I haven’t been blind since, not even close, but like I said, it still haunts me. For months after having several seizures, I constantly questioned the state of my brain, pausing often to wonder if maybe I’m not about to have a seizure because I feel a little funny. I haven’t had one since I stopped taking that particular drug, but I still think about it.
I think about a lot of things. I have a lot of time to think. And to write, like I’m doing now. That’s not to say that I don’t get out of the lab apartment every now and then. I go out every few days, depending on how I’m feeling, to go grocery shopping with Dr. Campbell or to the movies with Dr. Van Dyke or to dinner with both. Trips home are specially coordinated every few months so I can see my family and my friends, who I also keep in touch with via phone and internet. They tell me I look like I’m doing okay no matter how I look and they tell me they’re keeping me in their thoughts and prayers even though they’re too busy to think and not really for praying. They know I’m in Indianapolis taking part in a “study”, but they don’t know the extent of it. They haven’t asked for details and I haven’t offered. I haven’t asked for help and they haven’t offered. Everything is fine and one day, I’ll be cured. Happy thoughts and prayers.
The truth is that I wouldn’t tell them much of anything if they did ask about the “study”. I know I’m participating in some questionably ethical things here, probably not all of them entirely legal. I can tell by the elusiveness of Dr. Campbell and Dr. Van Dyke when I ask questions. They should just answer me straight up. They should know by now that I’m not going to blow any whistles on them. They have everything to lose, but I have nothing. It’s an interesting juxtaposition that makes us so compatible.
So why am I writing this if not to expose them?
Because I’m writing for the after.
After I’m dead, let this be read, let the world see just how I sold my body and my sanity and my soul because I had no other options. Let the world see how far I was willing to go in order to find some sort of purpose in life after I’d been written off by the capitalistic fatalists that run the health care industry at an incredible profit. Let the world see that for whatever morally and ethically questionable actions are happening here, in this lab, they’re nothing compared to the ones that are accepted out there.
Because this illness is going to kill me. That is a fact. Of all the drugs and the side-effects and the hope, I’m progressively getting worse, just like the doctor who gave me the initial diagnosis said I would. Barring the miracle I’m owed, I’ve got one, maybe two years left if I’m lucky.
And we all know that I’m not lucky.
It’s been over seven years since I walked into that doctor’s office for the first time with my weird collection of symptoms. I’ve been here in the lab for almost four. One or two more to go.
And so far, shit to show for it all.
So, they’d better fucking name this thing after me.