I think about how resilient she is, how strong her instincts have always been. I shared with her once that Camus quote, about how “In the midst of winter, I found there was, within me, an invincible summer.” It reminds me of her, how forceful she is, how capable she is of re-centering herself, even in times of upheaval. It makes me feel relieved, as a mother, to see the pure continuity of self in her, the way her impulses now to make art and heal are outgrowths of those same instincts she had as a kindergartener, as a grade-schooler, to grow toward the light. The Camus quote continues: “And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger—something better, pushing right back.” There is something strong inside me, pushing back, as I fight my way through this recovery; but it puts my heart at ease to know there’s something even stronger inside her, able to push back against the world, no matter what it hands her.
39
September 2016
Even after passing my six-month milestone of recovery without leaking, I’m still plagued by cycles of rebound high pressure. Sometimes this seems linked to my menstrual cycle, with my headaches and pressure increasing the week just before my period arrives, and subsiding once it’s over. But sometimes I feel stuck in a high-pressure vortex, my head squeezing tight behind my eyes, the part of my spine between my shoulder blades throbbing, with no relief, no matter how much dandelion tea I drink, or how long I wear the ice turban, or how much I avoid the things that trigger it (caffeine, salt, sitting). I notice that during these times, when it feels as though my high-pressure symptoms are as intense as they were in the days and weeks after patching, that my blood pressure is also high, and I wonder which thing is causing which. Is my high intracranial pressure causing an increase in my blood pressure? Is high blood pressure causing me to have symptoms of intracranial hypertension? Or is it some kind of cycle involving both systems, hypertension stoking hypertension?
For a while I battle this with diuretics, medications that make me pee every five minutes. This may clear out some fluid, but it doesn’t do much else to help my symptoms. Eventually I’m prescribed some blood pressure medication. Perhaps lowering my borderline-high blood pressure will help lower my intracranial pressure as well.
Time is your friend, Dr. Kranz had told me, early on in the recovery process. And it’s true that the passage of time has generated some proven results: I am older, my kids are older; my body and brain are more accommodating, and have more stamina; my cerebrospinal fluid production, while still evidently a little stuck in overcompensation mode from time to time, has calmed itself as the months have passed. Time has also helped in terms of understanding what has happened to me, what has happened to our family. There is a routine now, something predictable to depend on: I have a general timeline for healing and a place to go if the leak comes back; the kids have a schedule of when they’re with me and when they’re with their dad. We are becoming used to the new routine, the new prognosis, the way all kinds of inflamed, tender things are beginning to become soothed.
It’s difficult to send my kids away, to pack them off for the weekend, and not think about the weekend I sent them away with their dad and ended up coughing myself into a spinal CSF leak. I worry, as I send them away, that there may be some other danger, and I worry, as I send them away, that I won’t be there with them to help them deal with it. They are both angry, upset, lashing out more at their dad, who is a bigger target than I am right now. I’m sure my time will come, the time when they allow themselves the full expression of their sadness and grief and anger at me for having been sick; but for now the anger they wrestle with is wrestled with their dad, and my heart breaks thinking of them working through these things without me, fighting and standing up for themselves and setting boundaries and doing this hard work without me there to help them. Yet isn’t this exactly the work they should be doing, regardless? Isn’t this the work they would be doing even if I hadn’t been sick, even if there were no divorce? At thirteen and sixteen, at fourteen and seventeen, shouldn’t they be differentiating themselves from us, being angry or defiant, fighting for independence? Isn’t that normal? Still, I sit with them as they come back from their weekends, teary-eyed about a fight or discussion, an inability to be heard, and I listen to them and soothe them and remind them that what they’re doing is hard work, that I’m still here, that nothing bad happened to me while they were gone.
One weekend, though, in early September, when they’re with their dad, a bad thing does happen. I take the blood pressure medication I’ve been prescribed, as I have for the past day or so, and after a little while, I begin to feel a heaviness in my chest, as though I can’t breathe. I change positions, sitting up, because when I lie down, the heaviness and tightness in
