I think my proudest moment was successfully defending my PhD (technically, it’s a doctor of sciences not a doctor of philosophy, but we’ll just go with that). I did that on Friday the 13th of June, 2008 (a date carefully chosen with a built in excuse if needed!) at ETH in Zurich, Switzerland.

I had pulled the ripcord on graduate school 8 years earlier when I bailed on my first PhD program in materials science in the spring of 2000. I had been in the grips of a year-long sort of torpor/depression, hating graduate school and not wanting to be there anymore, but also unable to extricate myself from the near-cult of academia. Eventually, I “decided by not deciding” and fell far enough behind that I wasn’t going to be able to meet an impending deadline in the spring of 2000, so I quit. I then embarked on several adventures, including a year in Antarctica, a year living and working on the summit of Mount Washington (formerly holder of the world record wind speed), and then moving to Zurich.

My health had taken a noticeable downturn during/after my time in Antarctica, with worsening digestive issues and much more “brain fog”, which I assumed was depression. I’m sure depression was a component in my difficulty concentrating, but as I look back I see the beginnings of the more systemic aspects of hEDS really starting to hit me as I crossed into my 30s. I’ve had POTs-like symptoms and joint pain and subluxations since puberty, but now these were joined by these other things. I just assumed I was getting old.

In the course of my work at Mount Washington Observatory digitizing historical weather records, I stumbled across a professor in Zurich who was also digitizing historical weather records. I googled him to find out more so I could compose a letter asking if he was interested in our data, and noticed he had an opening for a doctoral student. I wrote a long email explaining about our data, and then wrote “P.S., I notice you have an opening for a doctoral student. I don’t have any of the prerequisites, but I’m interested and wondered if I should apply.” He wrote back “send me your resume.” A month later I was making plans to move to Switzerland! 

I didn’t want this PhD anymore than I wanted the first one, but I’d always wanted to live in Europe and the stipend offered for graduate school (this is normal in science) offered me a way to do that! So, I sometimes joke that I got my PhD by accident; I already knew I wasn’t really cut out for academia, but I couldn’t resist this opportunity.

I was more active when I lived in Zurich because I didn’t have a car; my “orbit” in the city was fairly small, so I walked a *lot* and took the trams. My knee was as bad as ever and I wound up having a second surgery on it in 2006, but it began subluxing almost immediately after the recovery period. The surgery set off my celiac disease and I went through a period of unbelievable fatigue before that was diagnosed. I continued having stomach problems and was also diagnosed with “gastritis”. 

I felt better after starting the gluten free diet for celiac—the crippling fatigue was back to normal mid-30s fatigue (I guess), but I found myself really struggling with “work”. I’d never stayed in one job for so long (post-master’s degree graduate school is basically like a full time job doing scientific research rather than typical “student” life), and I was basically bored out of my mind. I love learning new things, and sticking with the same specific project for 3 years was soooooooo hard! I also started having a lot of back and tailbone pain from sitting; combined with my boredom and I eventually concluded that I just shouldn’t have a “desk job” (some kinds of science is 99% computer work, while other kinds involves labs or field work). 

I was determined to finish, though, so I brought in all my “efforting” habits and eventually managed to wrap up a coherent research project. Luckily for me my thesis was of the “paper sandwich” variety, so at the end I just had to write a short introduction and conclusion and reformat 3 of my publications into the central chapters.

I’m a good public speaker (and I really enjoy it), and I was pretty happy with the research I’d done, so I was super nervous before my defense. I was also nearly the only native English speaker in the room, and I am pretty loud and speak demonstratively (as many Americans do), both of which gave me a distinct advantage over my mostly Swiss, very reserved audience and committee! The whole thing went great and I was just incredibly proud of all I’d accomplished! It was extra happy for me because, despite the fact that I knew I wasn’t really cut out for academia* and I didn’t entirely want to get this degree in the first place, I had also been pretty sad about dropping out of grad school the first time and had more grief around that than I’d wanted to admit. I’d spent so many years thinking I’d get my PhD and then to not have it (and to think that avenue was closed off forever) was hard, so when events conspired and I was able to earn my doctorate, I had an extra layer of happiness about it.

Looking back I’m also amazed at how much “grit” I had, and how hard I worked despite having multiple aspects of hEDS going on in my life. Sometimes I feel a bit awed at how much I’ve been able to accomplish!

*When I say I’m not cut out for academia, I mean that I have zero interest in being a professor, writing grants, and working on the same little corner of science for 30 years!

@ehlers.danlos

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