my story, thoughts

Life without major relapses

It’s been about¬†2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge — it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a backup.

Most recently it meant I could say yes to being on a program committee, a work event that I have not been able to participate in much over the last few years because I have restricted my travel to (mostly) no plane flights, and (mostly) no time zone changes. In other words, it means I can live my life a little bit more like I did before lyme, before 2006. But does it mean I am cured?¬† Continue reading “Life without major relapses”


Dreaming of change…

It’s been an interesting week. It started with a dream … my doctor called to tell me I needed a major surgery. My overriding emotion was joy — the doctor was going to open up my chest and clean it out, and then I would be cured. I couldn’t find Anind, wasn’t prepared, spent the day running around getting stuff together and almost missed my chance … but I got to the hospital just in time to… wake up. I tried immediately to go back to sleep, I wanted to finish the dream!

I thought at first this dream was probably just me wishing to be better. But then a friend pointed out that we are all the characters in our dream … so in a sense I was dreaming about curing myself as much as about being cured. And of course curing has many meanings.

One is perhaps the fact that I am on antibiotics, and they seem to be helping (it’s amazing to notice words suddenly appear in my vocabulary that I’d forgotten existed; and four four days I once again had the chance to feel like myself despite the incessant and ongoing need for tons of sleep, swollen lymph nodes, and the return far too quickly of the headaches).

Another might be the objective evidence I recently received that my cognitive functions are returning to normal — in fact, on a neuro-psych test, the only thing that was consistently depressed was my verbal functioning, and even that was functional.

A third might be the sense of control I get from deciding it’s time to move toward a more sustainable place work-wise. I finally have started speaking with colleagues, advisers, my department, about the right way to structure my job for healing during the next year or two. It’s an emotional moment, returning to a place I thought I’d left behind me in grad school, when I also had a major impairment around which I structured work and life. I hope that I am equally successful in moving past that impairment while continuing my commitment to doing the work I love and spending time with my family.