Ups...and Downs

I was struggling with a way to tie all the things I wanted to say into a neat little essay-type piece, so I decided to chuck the structure constraints and just go through them.

1. It’s officially springtime. Not that you’d know it from the snow on the ground and the fact that I’m wearing gloves today, but it’s a start. It occurred to me as I walked my dog this morning that I made it through a winter without being in the hospital. It has been at least a decade since I’ve said that. True, I’ve suffered from various plague-like infections since October, I haven’t been able to hear out my left ear for a couple of months now, and my peak flows have been horrid, but no matter. No steroids, no hospitalizations. Now, if my immune system and my antibiotics can hold out for a few more weeks, I think I’m in the clear.

2. When I am not jealous of Dr. Jerome Groopman (a famous doctor! A staff writer for the New Yorker! A widely-published book author! The man has that whole left and right brain strength thing going on that I can only imagine) I am wholly appreciative of and fascinated with what he writes. His newest book, How Doctors Think, tackles a subject near and dear to my heart, misdiagnosis. He argues that misdiagnosis results from mistakes in thinking, “cognitive pitfalls” that occur when doctors assume certain things based on a patient’s history or complaints and “anchor” themselves to one idea/diagnosis instead of considering broader possibilities. (See a great article taken from the book here ). Having been involved in this exact scenario for years, I really appreciate the clarity and insight Groopman brings to this discussion, and am looking forward to reading the whole book. (Plus, it makes me feel a little less crazy after all those years of answers that didn’t match my problems and a little more understanding of the physicians behind those diagnoses.)

3. There are days when I seriously question what I do and how long I can do it. There are also those wonderful, uplifting, soul-buttressing days, though, when I have no need to question. I have some amazing students. Thoughtful, inquisitive, and intellectual students whose projects and interests truly excite me, whose questions about science and public health and society make me want to read more and whose research reassures me just a bit about the future of our country’s health care system.*

4. Three people in my personal life are pregnant right now; two just made the announcement recently. Wonderful, exciting news, the kind of news you need when it’s cold and miserable out and you just want spring to start, when you just need to reminded that everything is a cycle and there is always the chance to start anew, when you can feel yourself getting happier just by virtue of their happiness reaching out to you. **

5. I had an amazing conversation with an incredibly wise and insightful CF patient the other night, one that left me with so many questions and so many things to think about. It was the kind of talk that left me humming with energy, my mind going in so many different directions. ***


*Sometimes I still question the choices I’ve made. Just when I think I’ve set up a schedule that is conducive to my health and my writing, I am plagued with doubt. Am I being lazy? Wouldn’t things like medical bills be so much easier to stomach if I took on more classes? In theory I am making an investment in the future by proceeding this way now, but that lag between theory and practice can be difficult sometimes.

**Apparently this spate of fertility has prompted well-meaning people to approach my mother and ask when we’re going to have kids. Not surprising, since people have been asking us that since we were engaged, but since that’s a complicated question with an even more complicated answer, this unsettles me. Right now there isn’t much to say about it, and I find myself not wanting to discuss what is there to discuss. I suppose I just wish the good news—the pregnancies—could remain all about the pregnancies and the people involved in them. I mean, I know it's human nature and an inevitable (and innocent) question, but I'd rather just focus on the three babies, not what anyone else may or may not be doing in the near future.

***At one point, I was asked “Do you know anyone like you?” I answered that no, I didn’t personally know anyone with PCD but that in the past couple years, I’d found groups online. I read from time to time, but rarely post. This segued into a really interesting discussion about the nature of community at different points in illness—for example, how if you’ve been sick all your life you might not need the same community you did as a child but if you’re sick for the first time as an adult, you might really need to seek out people with the same condition. I said that no doubt it would be valuable to know someone with PCD face to face, but that I know enough people with significant illnesses that I can extrapolate what I need to. Since I’ve never known anyone like me (except my parents, to an extent), this hasn’t bothered me.

I got home that night still thinking about community. In my inbox was an e-mail saying someone from the PCD Web group had died at 42. It was not anyone whose posts I had ever read, but I felt really down. It hit me that with community comes the burden of reality.