World Trade Center Volunteer Health Problems: No Good Deed Goes Unpunished

I just received an email from the World Trade Center Health Registry telling me I should file a preliminary claim with the Worker's Compensation Board. Just in case I've got some "latent disease" lurking in my system. Their words, not mine. I'd have used something like "possible ticking time bomb." I know the organization is around to make me feel better-like we're all in this together, looking out for one another-but when you're 29 years old and your health has only recently become questionable, it can really make you paranoid.

After I opened the email, I told my husband not to be surprised if one day I am simply nowhere to be found. I had this happen to a college roommate of mine once; and she only had the chicken pox. When I returned from class, I found a note scrawled on the dry erase board hanging on our door that read, "The school nurse kidnapped me." I envision us being put somewhere remote, like Alcatraz or something. Herded up like lost sheep. I wonder if I will have time to write a note. I try to think of things to say that don't sound crazy, but so far all I've come up with is, "men in white coats nabbed me." He'll think I've gone insane. But of course I am going to file the claim. I'm too suspicious at this point not to.

My imagination runs rampant. I log onto the WTC Registry page and scan the statistics to find out if my latest health dramas show up in high numbers, or if I am just a medical weirdo. At this point, it's anyone's guess-maybe it is normal to have taken three stress tests and a colonoscopy before the age of thirty, or.... it could be a toxic dust plague! A latent disease! When I go to the doctor, they always look at me and say things like, "Well, you have the symptoms of such-and-such, but the tests have all come back inconclusive." The only thing they are probably sure I have is hypochondria, but I bet either they don't want to tell me, or the tests for that have come back unknown as well. They are all government doctors, though; at this point I wouldn't believe them anyway. One cardiologist in Maryland basically told me that I'm physically willing the bottom half of my heart to beat before the top half sometimes. Cool trick, right? I wish I knew how I make that happen. I'd do it at parties.

One could probably say that my exposure was mostly voluntary. Sure, I did live downwind of the site in Brooklyn. When you see that big overhead shot of the destruction, the toxic death cloud had already moved into my neighborhood. Pulverized concrete ash was on my street for days. Anything near an open window had an awe-inspiring layer of dust. There are a few things I still have from those days, and you can see the ash trapped in nooks and crannies. I've always counted myself lucky that I didn't lose everything or have to get it cleaned and decontaminated. Now I am not so sure. My exposure came because I had to do something. In the days immediately afterward, when everyone was sitting around and wishing they could help besides simply donating money, I managed to get in and get down there. First I used my work connections, and when that wore out, I attached myself to charities. I went there all the time to help out. It was like an obsession. They wouldn't let me dig, but there was plenty of other stuff to do. When I walked in and out of the place I volunteered most, there was a sign. Uncle Sam pointing at me and saying, "We want you to wear your mask!" That's great, but nobody ever gave me one. I got a hardhat once, but I gave that away. Nothing ever fell on my head, coincidentally. One group gave me a t-shirt at some point. That one I kept. I doubt it would have helped even if it had occurred to me to tie it around my face and use it as an air filter.

I don't blame any of the organizations I volunteered with. It isn't their fault. And perhaps even if I had known that five years later, every cold I get causes paranoia that this is the end, I still would have done what I did. Volunteering there is one of the things I am most proud of in my life. It's just a shame I didn't have the information to make that choice, and that it could kill me. Today, tomorrow, 50 years from now. Nobody knows. It's the toxic lottery.

I had heard on the news way at the beginning that the air quality was fine. I didn't see how, but the EPA was there a few times and I don't remember seeing them in scary suits with oxygen tanks. There they were, breathing the same air we were. They didn't pull that trick Congress did, tell us to go back to work while they were fleeing from their building. The people I met--the Bravest, Finest, Strongest and those newcomers, the Men of Steel--had their doubts too, but there was nobody really to argue with. They all had better things to do. The one person I said something to tried to fire me as a volunteer. Besides, we had gotten the thumbs up from OSHA. Translation: that was that. I'd come home, covered in white soot, smelling like the dead. Just a regular shower afterward, not a decontamination bath or anything cool like that. The rescue workers had to shower at the tent, but I was allowed to just walk right out. Nobody said a word as to what was in that dust. A government agency told a friend of mine who worked on John Street-only a few blocks away-she could go back to work without even replacing the air filters in her windowless office. Not exactly something that inspires confidence. She ended up quitting.

I've made long stops in IL, FL, and now MD since I volunteered. The Health Registry still found me, and that's saying something. All those moves (plus two detours back in New York), and a name change. However well intentioned and concerned they are, it is still pretty creepy. Government stalkers? Or is it my own fault for putting the phone in my name and not my husband's? I feel like I'm spreading an evil virus around the country, like that time I had Mono and basically took it on tour, infecting unsuspecting friends without ever being diagnosed with it myself.

The WTC Health Registry keeps tabs on a lot of us now. So far I've participated in two "How Are You Feeling?" surveys. They seem to be mostly concerned with my mental health and how I'm breathing. I never know what to tell them. Like most of America, and especially New Yorkers, I have good days and bad days. I've told them that when I get sick now, I'm sicker than I've ever been in my life. A simple cold takes me down for more than just a few days. I never used to get the flu. Or bronchitis. I got an ear infection for the first time since I was about three recently. I've gone to the ER more in the last few years than the rest of my life put together. My tonsils are preserved in jars at a Naval research center simply because nobody could believe how large they were. And that's not even going into my heart issues, which they think (but who knows?) are stress-related. Is that going to be my toxic legacy? I don't know. I wonder what's happening to everyone else, if they are now asthmatics and chronic bronchitis sufferers as well. I have a feeling I will see them all again soon. They'll be my cellmates in Alcatraz.