I wanted to give them a story of continuity, predictability, dependability, so they could trust, be secure, not be seduced by the anxiety of intermittent reinforcement. And so it seems doubly cruel to reveal to them the plot twist that nothing is as it seems, that their mostly placid home life is a frozen surface with angry currents churning beneath, that their dependable, omnipresent mother is actually absent, restricted, distant, lost to them in the confines of her bed, that everything they thought they knew is actually just a story, and the story is a lie.
And so it is true: I am an unreliable narrator.
In telling them this story—of my illness, of the divorce—I should be calm, calculated, completely in control of the telling, so that it sounds to them like a story about a runaway rock turning into a landslide and everyone making it out alive, instead of the story itself becoming a runaway rock turning into a landslide, with no guarantees of survival. I should make them feel confident that they are in good hands, that I’m trustworthy and above emotion, not part of the audience experiencing it, or held captive to it. And yet I am not in control of this story. I am beyond narrative; I am unable to frame these events in a way that feels safe and makes sense. I am tumbling down the mountain with them, instead of telling them a story of what it’s like to tumble down the mountain.
And yet the only way I can see our way through it is with more stories. So I try my best, I continue my unreliable narration. Here is the story of how our lives will be different: weekend schedules and taking turns, custody and visiting hours. Here is the story of how our lives will stay the same: home is home, and school is school, and love is love, that doesn’t change. Here is the story of how we grow apart and grow back together; here is the story of how we become a different kind of family; here is the story of remarriage and reconfiguration and reforming and reemergence. Here is the story of how we move forward when I am stuck in time, my brain compromised, my pain constant, as aching and omnipresent as their emotional pain, my existential trauma as traumatic as theirs. Here is the plan for how we will do this, slowly and step by step, walking through the fog, limited by how little we can see before us. Here is how we get through this. Here are the stories we will tell ourselves.
It seems cruel and pointless and not enough, but stories are all we have.
21
October 2015
My sister Jessie drives me to the hospital for my second blood patch. I lie down in the car, I lie down in the waiting room, wedged sideways in a double-wide chair. I lie down everywhere. She’s allowed to come with me as I’m escorted to a room, a curtained-off area with a bed and a rolling side table and a television tuned to a Law & Order marathon. I change into the starchy hospital gown, the fuzzy socks with nubs on the bottom to keep me from slipping in case of some fleeting moment when I might be upright, and lie on the bed, blissfully flat. A nurse comes in and asks me a few questions, including one I find slightly odd: “How long ago did you give birth?” I raise an eyebrow and say, “I mean, the last time was roughly 13 years ago?” and we both laugh an uncomfortable laugh, and we are both confused as to which one of us might be joking. “You are here for a blood patch, right?” she asks, and I say yes, and then she leaves, and my sister and I look at each other like What was that about?
We watch television and make small talk while we wait; Jessie checks in with her boss on the phone, I lie flat and doze off and on. My procedure is scheduled for 10 A.M., but soon it is 10:30, 11, 11:30, and no one is coming for me. Jessie has heard the stories about my experiences with hospitals and this leak, with the last blood patch I had, the mix-ups and delays and confusion; she jokes that this must be par for the course, just the way these things seem to go for me, but pushes aside the curtain to go find the nurse in charge of things and discover what’s causing the delay.
After some discussion, my sister returns, followed by the nurse, who apologizes and tells me she’s actually been on the phone for the past 45 minutes, trying to figure out what’s going on. It appears that the neurology fellow who scheduled this procedure has arranged for me to be in the wrong department of the hospital. I’m currently in the place where women who have recently given birth are treated for post-dural puncture headaches—CSF leaks due to faulty administration of epidural anesthesia. These women are given epidural blood patches the way my first one was done, sitting up, leaning on a resident or nurse while an anesthesiologist shoots them blindly with blood in the same spot where some other anesthesiologist’s needle pierced their dura. The part of the hospital where I was supposed to be scheduled is the chronic pain center, in the neuroscience building—the place where anesthesiologists work in operating rooms, where they can give patients oxygen and pain relief and perform blood patches using fluoroscopy, which I now know is a kind of X-ray imaging, giving them a better view of what they’re doing,
