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.
My most frustrating symptoms, however, are cognitive deficits. Often it’s difficult to read and process a passage of text, and I’m a slower writer. My arithmetic skills, never sharp, are also slow because I get distracted or lose my place. Sometimes it’s simply a problem of not finding the right word to finish a sentence or being unable to remember a name. Other times I do some quirky things that I simply can’t explain, like putting ketchup in my lemon soda and toothpaste in my contact lens case. We just try to laugh off these behaviors. “What, you’d think you have a brain virus or something,” my husband teases. However, the things that keep me awake at night are the mindless or potentially dangerous things I do, such as turning on the wrong burner on the stovetop, or becoming confused when I’m out shopping and can’t figure out how to go down the “up” escalator. I begin to question my competence to care for my children, and I don’t drive for fear I’ll do something dumb (my doctors concur).
Usually I’m pretty positive, but on a recent sleepless night I lay awake worrying about what’s happened to me and where this is going. Here I’d spent so much time and energy advocating for the satisfaction of stay-at-home parenting and pursuit of academic interests part-time, and now because of my brain health both are difficult to do. Of course, I was still Mom even if Dad, Grandmas, Grandpas, and friends had to do some of the physical and practical parts of my job. As my mind wandered I remembered a Mama PhD piece that I’d read three months ago. In her April 1 post, Elizabeth Coffman wrote about her recovery from serious brain injury, and remembering that she also wrote about being afraid of her inability to parent her own children brought me comfort. I was very moved by her piece when I first read it, never realizing that despite the differences in circumstances of our particular health situations what resonance her story would have with me in a few weeks to come. She went back to her work as a film- maker to help with her own recovery. Reading her story again has helped me realize that I need to get back to work too. I don’t think I can find ‘normal’ until I immerse myself in things I used to do — maybe in small, patient steps at first.
So I’m back to some of the housework, and taking my shift in supervising the bedtime parade. And it’s very satisfying to be cooking again, except I have to stay away from knives—my hand-eye coordination is not what it used to be. As my four-year-old daughter said so supportively to me, “Mamma, you need to take knife lessons — when your brain is fixed.”
And practicing my other skills is important too. I know the only way I’ll feel confident in my communication and math ability is to use them. My husband has devised regular cribbage therapy to help me practice my math skills; unfortunately he usually wins, so I refuse to play for quarters yet. And writing this blog is a big step in healing, a way to reassure myself that I can, despite my temporary set-backs in brain function, express ideas, think, and create.
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