ABC's and PhD's: Towards a New Normal

Liz Stockwell:

For the past nearly two months I've been working towards some sort of new normal as I recover from and work with my doctors to figure out how to live with the illness I never dreamed would turn our family life so utterly on its head. Since then we've been taking one day at a time, each day assessing whether I need to spend extra time in bed on pain killers to get over a bad migraine and whether my husband has to once again skip his work obligations to take the children to one of their activities or take me to a doctor's appointment. Our parents have all spent time with us, each taking a one to two week shift caring for our household. It's been an unexpected silver lining for us to have so much time with them, and they give my husband a break to get some of his own work done and get back to academic life. He's taken over as principle provider of domestic services and chauffer, as well as breadwinner, and he said recently that he's looking forward to going back to work full-time so he can have a vacation -- he's exhausted! With our families here, I get many greatly appreciated offers to "just go lie down, I'll take care of this" though it makes it a little more difficult to find 'normal!'

Since my last post, my illness has been diagnosed at different times as brain stem migraine and viral encephalitis, for which I spent 12 days in hospital on a course of intra-venous anti-viral drugs. I should add that despite my tongue-and-cheek tone about the diagnoses, I've been very happy with the excellent medical care I've received and the thoughtful consideration my doctors have made for the fact that I'm the mother of two young children. When they saw how difficult it was for our family to be separated with me in hospital, they arranged for day passes and made accommodations for me to be temporarily unplugged from the IV to visit home. Yesterday was a long awaited appointment with a second neurologist who weighed in on my crazy collection of symptoms with yet a new diagnosis: syndrome of headache, neurological deficits, and cerebrospinal fluid lymphocytosis (or HaNDL, which almost sounds like it was invented as a catch-all for me and my symptoms). Along with the white blood cells in my spinal fluid, migraines, and dizziness, I also have entertaining colorful hallucinations (fairies, dragons, iridescent butterflies, and hammering cartoon characters) which have become an unlikely family source of creativity as I describe the latest over breakfast and my son later reproduces them, based on my descriptions, in his drawing journal at school. Fortunately his teacher is aware of my neurological problems, since I've not yet received any worried phone calls or visits from social workers to investigate my seven-year-old son's involvement with mind-altering drugs as the inspiration for his art.

Posted by Jim Zellmer at June 25, 2009 2:32 AM
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