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CFF Internship

How I became a footnote in medical history

In the summer of 1989 I accepted an eight week internship at the national headquarters of the Cystic Fibrosis Foundation. It was a time of change in my life, and several things happened that made it memorable.

Getting There

I drove down to Gaithersburg, Maryland on the weekend before the internship began. The Foundation had rented apartments for us, which made everything easy. The offices themselves were in Bethesda, about ten miles closer to Washington D.C. I guess it was too hard to rent apartments that were closer.

The drive from New York was uneventful. I don't remember anything that happened that Saturday. I'm not even sure whether I met the person I'd be sharing the apartment with. I was the first to arrive there, that much I know.

The first thing that made a real impression was finding a newspaper on the doorstep. On the first page was a news item that created a big problem for me. The story was a simple warning that certain D.C. streets were going to be closed on Sunday for the national gay pride march.

To understand why this was a problem, you'll need to understand what I had been going through. Not that long before, I'd started coming out to friends and family. I still lacked the confidence to announce my orientation to the world. And now, here was a chance to be immersed in what would be a huge pride march. Yet there were a few things that held me back:

• I didn't know the area at all. I don't generally like driving in cities, and I had no idea what D.C. was like at all. This made me really uncomfortable with the idea of going into the city on my own.

• It was the first day when all the interns would be there. It would be poor form to ditch these folks on a day when we should be getting to know each other.

• That pesky lack of self-confidence. Specifically, I wasn't sure whether I'd come out at the Foundation or not. Going to a pride march would almost force me to come out. (That's not really true, of course, but it felt that way to me at the time.)

Sad to say, I didn't attend the march. I've wondered ever since how my life would have been different if I'd had the courage to do the scary thing.

Actually, the whole dilemma discombobulated me so much that I didn't go with the other interns on a sight-seeing tour. So I blew another social opportunity. It was the worst of both worlds.

Work

The internship itself began pretty easily. My work wasn't too difficult. It was system operations on the mainframe and some miscellaneous PC and network administration. We ran cables, solved problems, and did some custom programming. Nothing mind-bending.

There were two notable moments. One was trying to solve a Novell network problem. For some reason the administrator couldn't log in, or something like that. It stumped me. It stumped my supervisor. It stumped the consultant. It was a mystery.

Then, one morning while carpooling to work, I got it. In one sudden Ah-ha! I knew what the problem was, how to fix it, and that the fix would work. And I was right. It was a great feeling that really helped my professional self-confidence.

The other notable moment was writing an interface to a database. The users needed to be able to search on some criteria that were computed from data stored in the database. At the time I didn't think the database could do that -- it probably couldn't -- but I did have the idea of adding the computed data as fields to each record. Unfortunately, I was using a front-end builder that wouldn't allow me to silently compute the values and insert them, so I came up with a truly disgusting kludge. It worked, but was not only error-prone, it made more work for the people entering data. To whoever entered data: I'm sorry, I was young and inexperienced. It won't happen again.

We quickly settled into a routine. There were seven interns in all, four men and three women. I was rooming with Lee, who hailed from Salt Lake City. We got dinner together, hung out, carpooled to work together, et cetera. Or at least we did for the first week. Then things took a wrong turn very quickly.

Going Sour

I don't remember the exact chronology of how things went wrong. Did Mike go into the hospital first, or did Dan leave before that? You see, all the interns had cystic fibrosis. It was requirement for the internship. That's all fine and dandy, except it meant our health wasn't the best. This caused several problems.

The first, I'm pretty sure, was when Mike had to be hospitalized. He didn't have any lung problems (ever!), but he was prone to getting obstructions in his intestines. As a matter of fact, he'd had surgery for this problem enough times that his mother joked that they should put in a zipper. So we were visiting him in the hospital as they tried different things to remove the obstruction without surgery.

Somewhere around this time -- it must have been a week or two into the internship -- Dan disappeared. And I mean he just went poof! into thin air: no goodbye, nothing. One day he was there, the next, gone without explanation. We were mystified.

We soon learned the reason. It was the littlest thing, the size of a bacterium in fact. That bacterium is Burkholderia cepacia (formerly called Pseudomonas cepacia), which can be a serious health risk for people with CF. It's a tricky little bugger: some people who get it are fine, while it can be a grave risk for others. In some CF centers, it's endemic, while in others it is virtually unknown.

That was the problem. Dan had learned that Lee had B. cepacia, and rather than risk infection, left. I'd been living with Lee for a week, so I was the one at greatest risk of infection, but I didn't even know what B. cepacia was. One of the problems with it is that nobody knows how it's transmitted. There were no well-documented cases of transmission.

And that's how I became a footnote in medical history. Months after the internship was over, I cultured positive for B. cepacia. My culture was sent off to a lab for ribotyping, as was Lee's, and they matched. Completely by accident, we'd discovered that casual contact -- rooming with someone for two weeks -- created conditions allowing transmission. It was an unhappy discovery that would have consequences for the internship.

When Dan's reason for leaving came out, I was switched to the other apartment (with Mike). The interns started to get back on track as a group, and concentrated on other things.

Good Stuff

There were some memorable moments. There was the time we passed the Tick Tock liquor store while driving around. It became our way of saying "get the lead out". We just had to look at each other and say "tick-tock!", after which we'd start laughing.

Then there was the dinner near the end of our time there. On the way to the restaurant we passed the S & M Gift Shop. It looked like a simple mom & pop store. I mentioned this at dinner, and that I thought it was funny. Nobody at the entire table got it, leading me to awkwardly explain what S & M is. Same planet, different worlds.

And let's not forget the Fourth of July. I spent it with my cousin and her fiancé on the Mall in front of the Capitol, listening to the music and watching the fireworks. It was a great time.

This was also the summer in which I read Bill Griffith's Are We Having Fun Yet? Zippy the Pinhead's 29 Day Guide to Random Activities and Arbitrary Donuts. In an attempt to inject FUN into my life, every morning upon waking I'd read Zippy's daily prognostication. This might have made my life more fun, or not. Research into this question is still seeking funding.

Another great afternoon was spent with my friend John, who lived in Arlington, Virginia. We spent the afternoon in Georgetown, and he encouraged me to get a t-shirt with the face on the Shroud of Turin. I was being pragmatic ("I don't need this"), but John convinced me that sometimes you just have to listen when Whimsy speaks. We had a fun time. (It inspired a t-shirt as well.)

That summer, Stan Ridgway and Adrian Belew were playing club dates in Georgetown. Unfortunately, I didn't make it to either. One was sold out, and the other happened after I left. It did confirm my interest in Mr. Ridgway's works, though.

At a Foundation picnic, someone taught me to juggle an unusual pattern.

The CF Foundation was an interesting place. More than fifty percent of the national headquarters was devoted to making money. Most of the money went for research, of course. The medical director at the time showed us exactly how it was done. There was a storage room filled with furniture and chairs. In one corner were piles and piles of paper: cubic foot upon cubic foot. These, we were told, were grant proposals. They came in all year and were stored in this corner of a room. When the time came to disburse the year's research money, the medical team would do nothing but go through the piles of research proposals. Some got money, some didn't. It was an interesting system, and one that has paid off. The Foundation's been able to raise enough money to interest researchers, who got money and made breakthroughs, which made the field more interesting to other researchers.

Speaking of breakthroughs, 1989 was the year the gene which causes CF was discovered. As a matter of fact, before the internship began the gene had been identified but not confirmed. The medical director knew that there was going to be a major announcement soon, but didn't let us in on it. Hmph.

Unloved Metropolita

I can't say that I loved the area. We lived and worked outside the D.C. Beltway, but the traffic was horrendous. The main artery was five or six lanes in each direction, with construction always going on, and it was jammed full in the morning and afternoon. One Saturday morning I had to cash a paycheck, which meant a trip to Bethesda. It was about 11:15 AM, and the bank closed at noon. The trip was less than ten miles -- no problem, I thought. Then I got on the highway, and the traffic was actually worse than at rush hour on a work day. Fortunately I was able to find another branch of the bank farther out.

The entire area seemed dedicated to roads and condominiums. At one point I tried to estimate the population density and got a figure that scared me. I heard stories of people who commuted sixty miles to the metropolitan area. It was the only way they were able to afford to live in a decent area. Urban sprawl struck Maryland with a vengeance. I resolved not to live in that kind of place.

The End

The internship ended abruptly with three weeks still to go. I never got the full story, but apparently the Foundation decided that the threat of cross-infection from B. cepacia, and possibly other bacteria & viruses, was too great to ignore. They gave us the rest of our pay and sent us home.

I was relieved. The people were fine, but the area was getting to me. I'd come out to one co-worker, which helped my mental state, but really missed the man I was dating. So the end was a mixed blessing.

To sum up: I had an insight, made a blunder, missed an opportunity or three, learned, and became a footnote in medical history. Not bad for five weeks.

Thanks go to Suzanne Pattee, who coordinated the intern program. She's continued her work setting CF policy, and last I knew was doing well.

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