two adventures

So, I’ve been absent. In part it’s been because I can’t really see. Allow me to report two adventures: one happy, one not so much. So to start with the happy:

The food collective I founded with four other people while in graduate school was reviewed by the NYTimes and Gourmet magazine!

I guess if sociology doesn’t work out…

And now for the sad…

Two weeks ago I got back from Zurich where I had eye surgery. The surgeries were part of the continued drama with my disease: keratoconus. My corneas are getting worse and worse; I’m well on my way to requiring corneal transplants. The procedure I had is in a clinical phase here in the US; it stops the degeneration of the cornea (it doesn’t improve the vision, but basically puts and end to its thinning). The doctor leading the FDA trial is at Columbia. I was accepted into the trial. But he strongly encouraged me to have the procedure done right away, as I’m nearing the point where it will no longer be helpful (the trial is randomized, so I might not get the treatment for up to 9 months). My doctorl expressed the worry that without treatment I could be blind in my 50s or 60s.

So I headed off to Zurich to see the doctor who developed the technique that is in the trial phase here. He’s been doing the procedure for almost a decade, and it’s been approved in Europe and the UK. My parents and brother took turns helping me as I recovered. The only downside to it all was the RIDICULOUS cost. Which I’m no longer going to think about. Or rather, I’m going to try not to for a while. Until bills come in…

I will not know the success of the procedure for about 8 weeks. The cornea is very slow to heal. However my doctor here at Columbia is very optimistic. The main problem right now is that I had a post-operative infection in my right eye. It has only just cleared. That eye is weak and very slow to recover. I cannot see well at all. I can’t read or write (for more than an hour a day). I spend most of my time listening to books on tape! Let’s just say that it’s been quite a struggle.

For those of you who know me, I’m a pretty upbeat, optimistic guy (all my dire blog posts to the contrary). And I have been working to stay so. Luckily, in the last few days I have been seeing well enough to see what I can type for about two hours a day (granted, in ridiculously big fonts on my word processor). The experience has been odd. On the one hand, I’ve been very worried about, “what could I do if I can’t see?!?” On the other, I’ve thought of the relationships I’m in that have helped me along the way. And I’ve been less pessimistic. I’m in much better spirits than when I first got off the morphine I was on for the procedure (yes, morphine). Once I stopped pain meds, thanks to morphine’s upper-qualities, I was super down (not having morphine to enjoy any more). But not so much any more. Things are looking up (both physically, and mentally).

I can’t help but be reminded of conversation I had in one of my first graduate school classes (economic sociology):
JM: So, basically the idea is that people adjust. They over-estimate how events are going to effect them. They think that bad things are going to be the end of it all. And potentially good things are going to really changes their lives. But really, we just adjust. We have a baseline. And even though things happen, we just adjust.

SK: So, what you’re saying is that things are never going to be any better than what they are right now? Ugh. That’s depressing.

JM: Well, maybe. But also never any worse.

Thanks, James. I think you’re probably right. And that’s not that sad.

8 thoughts on “two adventures”

  1. Oh, and PS: Since I can’t see so well, I’m going to conferences (can’t read or write; might as well listen). So I’ll be at SWS. Say hi! I might not see you. If we’re friends, don’t take it personally that I’m wondering who you are. If we’re not friends, well, say hi anyway.


  2. I am sure we have all been thinking about you while you haven’t been posting–I certainly have. I am glad that the surgery went well, and I hope that your recovery from this eye infection is speedy.


  3. you have all my sympathies. when i had my cornea problem in my right eye (which lasted for a year but in a much milder condition than yours), i also had scary thoughts about “what if i lost my eyesight”… so i can almost imagine (but hardly the depth of) what you’re going thru right now and the kind of courage and strength you’re collecting. i wish you all the best in your recovery and hope you’re enjoying good audio books!


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