I am a photojournalist… sort of. I don’t have a college degree in photojournalism, or journalism, or photography. No, I have a master’s degree in biology and a bachelor’s degree in microbiology and cell science. Before I started contributing words and pictures to Creative Loafing, I was a scientist at a major research university, dutifully examining the effects of a potential HIV therapy on the immune system. Then a tragic complication of my autoimmune disease, scleroderma, forced me to give it all up. But it hasn’t been all bad. Now that I’m not trapped in a laboratory all day, I get to go on field trips.
Every September I trek through an assortment of haunted houses, camera in hand. Because I get in for free, I think of it more as a perk than a job. However, this year’s haunting season has been a series of false starts and misadventures. It’s not the houses. The houses are great. The problem is my dysfunctional lungs, and the barrage of fears they inspire.
Let’s take a moment to talk about my stupid fucking lungs while I drink a beer and angrily pound on my keyboard (I know I shouldn’t drink while working, but fuck it, I deserve this beer). Do you know how lungs work? You should know a bit of physiology for this to make any sense — but don’t worry, I got you.
Every cell in your body needs oxygen. This is why we breathe the air we breathe. When you take a breath in, the oxygen-rich air travels down your bronchi to a group of air sacs in your lungs called alveoli. This is where the oxygen is supposed to diffuse into your bloodstream, which it then travels (like a highway) to every single cell in your body. In a normal person, oxygen successfully makes it through the walls of the blood vessels in the lungs. In someone with a rare disease called pulmonary arterial hypertension, the walls of the blood vessels are often too thick for the oxygen to make it through. Without enough oxygen, the organs start to, well, not work right.
How did the blood vessels in my lungs get so screwed up? I’ve spent years asking myself this question, and I still don’t have a satisfying answer. There’s more than one way for scleroderma to elicit PAH, and no one’s really certain what causes scleroderma anyway. We know that collagen production is abnormal in scleroderma, but we’re not always sure why. Predicting how serious a person’s scleroderma will become is damn near impossible. As much as I knew about the immune system, I was still blindsided by my diagnosis.
Describing the science is easy. What’s hard is describing how this all feels. Let’s turn back the clock seven years, back to a time before I had oxygen tanks as a constant companion.
I was 31 years old when I realized I couldn’t walk up stairs anymore. I was getting over a nasty case of the flu (or so I thought). I blamed my breathlessness on the flu that day, as I awkwardly huffed and puffed up the stairs of the parking garage after work. I felt sick to my stomach. My arms and legs felt weak. My head throbbed. That’s what it feels like when your body starts to run out of oxygen — all of a sudden, not an organ or a muscle works properly. Somehow, your previous momentum sustains you. You continue to move forward, though it feels like you’re trying to translocate your own dead body through space. Stairs are pretty much a nightmare for anyone with PAH.
Other people are afraid of spiders. I’m afraid of stairs.
Getting back to haunted houses and things normal people are afraid of — you know, like murder and clowns. These things don’t scare me. I’m pretty sure I already know how I’m going to die — it’s going to be this fucking disease. For me, dying of PAH is far more likely than being murdered by a clown. I’m not afraid of death itself. The idea of suddenly being gone from the world doesn’t disturb me at all. Nothing lasts forever, everybody dies eventually, insert more clichés here. It’s those final moments that scare me. So please, for the love of God, don’t ask me if I will suffocate; I don’t want to think about it. My plan is to die pumped full of morphine, in no pain whatsoever.
Things could be worse; I could be murdered by a clown. Think of all the haunted houses I go to: What if some murderous lunatic dressed up as a clown and hid in a local haunted house? I’d be screwed.
My real-life haunted house misadventures are nowhere near as dramatic as being murdered by a clown.
Let’s start at Howl-O-Scream, definitely the best haunted attraction in the Tampa Bay area. I mean, where else are you going to find six haunted houses in one place that’s not Orlando? Everything was going great until we decided to walk the entire length of Busch Gardens at a breakneck pace. Why did I decide to do this, you ask? Well, I honestly didn’t realize how large Busch Gardens is. Nor did I realize how fast our guide was. He was really fast. I kept thinking he’d see me lagging behind and he’d slow down, but he didn’t. By the way, my “fast” is probably what other people would call “a normal pace.” So, we were walking so “fast” that I started to run out of oxygen — the more you exert yourself and the more oxygen you use. In my case, the more oxygen in my tanks I use…
Meanwhile, my colleague, John Allman, kept glancing behind him, looking terribly worried that I could pass out at any moment. I was trying my damnedest to keep up, because I was afraid of embarrassing myself at work and becoming fodder for office gossip. Of course, I should have asked for a scooter in the beginning — Busch Gardens rents ECVs. But even making this simple request filled me with dread. I worried they’ll be annoyed that I need this accommodation, and next year will ask my employer to send someone else — someone without these limitations, someone who doesn’t require all this extra shit to do their job.
(Sometimes, I even worry that my best friends will tire of me not being able to keep up, and they will stop inviting me to things. These are my nightmares.)
But let’s talk about the consequences of my decision not to ask for a simple accommodation at Howl-O-Scream. I could have happily driven an ECV from one haunted house to the next. Instead, I was bent over a wall, gasping for air, unnecessarily worrying John, and Howl-O-Scream staff, who called a golf cart to get me back to my car, where I had more oxygen tanks waiting. John tried to minimize my embarrassment and cheer me up as best he could. Despite my challenges and, let’s be honest, bad decisions, I still had a great time. Not just because of the well-thought-out haunted houses and inventive scare zones, but also because people showed me compassion when they saw me struggling. It wasn’t the perfect experience, but I knew that with a couple simple changes, I could make it work next year.
Unfortunately, this wasn’t the case at haunted attraction #2, which I was really excited about until they handed me a waiver asking me to agree to not having a respiratory condition. In case you haven’t been paying attention, I have a respiratory condition. So I probably shouldn’t be signing papers saying that I don’t have a respiratory condition. Because that would be a big fat lie…
I handed the waiver back to the organizer and told her I couldn’t go in.
She looked at me, confused.
“If this is not for people with a respiratory condition, then I cannot go in,” I said in my most confident voice. She looked at the paper, and said she didn’t know why they wrote that.
“Have you had gone to other haunted houses?” she asked. “Were you OK there?” Yes, I said, I’ve been to other haunted houses and I was fine. She asked if I have a problem with fog machines. I’ve never had a problem with fog machines before. Apparently, a fog machine is the only issue, so I decided to sign the waiver and enter the haunted house. I made it about 20 feet into the house when the smoke started to hit me. It breathes heavy, like humid air, but twice as bad. I feel my breathing become more labored. Another 20 feet and the smoke has gotten so thick that I start to cough. I turned around and walked out before I even got past the first monster.
You may call me a wuss. It’s true. I am neither brave nor bold.
Not anymore. Now I just think of all the things that could go wrong, because, quite often, things go wrong for me. It’s possible that I could have made it through that haunted house, coughing the rest of the way. I wasn’t afraid of monsters popping out of the shadows.
I was afraid of not being able to breathe.
Now, I’m afraid, my days of haunted houses may be over. You can just add it to the list of everything else I’ve lost due to this disease: My career in science, my $55,000/year salary, my apartment, my furniture, my saxophone hobby, spontaneity, sex appeal, over half my worth, a lot of alcohol, and a big ass chunk of my dignity.
What I’m trying to say is that you should go to more haunted houses, because you never know which haunted house will be your last.
This article appears in Oct 11-18, 2018.