Back in the fog again, I’m rendered incapable of narrative. And yet once I’m there, flat, in the fog, the me who is Me safely tucked away in a fortress of pain, reduced to merely acknowledging that thoughts exist, I can see how clearly my thoughts behave without me to direct them. This, I will remember later, is the aim of all the books I have read on Buddhism, all the meditation podcasts I have listened to, all the teachings I’ve encountered: to understand that you are not your thoughts, and your thoughts are not you.
But this doesn’t feel like enlightenment, as I struggle to think, as I sense a part of my brain continuing on without me. It feels terrifying.
The Buddhists have a word for that, too: groundlessness.
Enveloped in fog, I’m faced with the limits of my storytelling, the fruitlessness of storytelling.
Attempting to trace this back to the beginning of everything is merely an exercise. Coming up with a theory, a plausible fairy tale, of how it started doesn’t change the facts of where I am now. Telling myself the story of how my relationship unraveled doesn’t knit it back together. Following the trail back into the past changes nothing about the present.
And yet this is the work of the self. This is the work of the brain, the work of the mind: creating narrative, finding patterns, puzzling things into place.
This is the work I must do with my children: help them understand the story of their lives, help them place these things in a context, help them frame a narrative around the disruption of everything they’ve known.
And yet don’t these stories just distract? Don’t they obfuscate? Don’t they hide the truth, which is that there is no narrative, and nothing makes sense, and there is no pattern, and the world is uncaring, cruel, no lessons to learn, no moral, no upside, just the brutal facts of this happening, and then this happening, and then this happening?
I tell them: There are lots of different ways to be a family. I tell them: Look at all the people you know in your life and the way their families are, the way your friends seamlessly move between one household and another, the way it is just a fact that they have two families, or two moms, or two dads, or four moms, or three places to go. These people are on the other side of where you are, but at one point they were here, where you are now, confused and upset and unsure about how to navigate this transition. There is a map for this, and while someone else’s map won’t look exactly like yours, and the terrain you travel to get where you’re going might be different from theirs, it is a path you can follow. This is a thing other people have done. Our family isn’t the first to change its configuration.
I tell them: Here are the things that won’t change—that I love you, and that you will always come first in my heart; that your dad loves you, and that he always will, no matter whether he lives here or somewhere else. I tell them: This isn’t the ending of the story, although it feels like the end. This is somewhere in the middle, a turning point, a journey into the woods where a protagonist wanders, seemingly alone, and encounters magical, secret things that will change them profoundly. It’s the part where things seem bleakest. The part before the part where everything turns out fine.
I tell them stories, I tell them to think of stories, even though I doubt the power of stories to do anything but lie about the painful truth of this pain, physical, emotional, that affects us all.
In fact, we have all been betrayed by the story I’ve been telling.
The story I’ve been telling them—that everything is okay, that the way things are in our house is normal, sustainable—is a lie. The story I’ve been telling them about our lives—that everything is stable and dependable, that feelings pass and that brains are powerful and that reframing things to better understand them is the right way to cope—is a lie. The true story is that things are not fine, that things are not sustainable, that things are out of our control, that pain cannot be mitigated, that making things work means acknowledging that they are broken, unfixable. But how can I tell them that?
I have been a storyteller like the narrators in fairy tales, beginning and ending things with the hand-wavey vagueness of once upon a times and happily ever afters. I have been a storyteller of bright sides and best-case scenarios, a storyteller whose narrative job has been to make it easy for my listeners to believe that everything’s okay, that everything ends well, that they are safe. As a storyteller, I should have better warned them of, should have better foreshadowed, the surprise of things falling apart.
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 an
d 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, and cutting down on the chance of piercing the dura yet again and causing a new leak. Because my neurologist scheduled me at this place instead of that one, the anesthesiology team that should be performing my procedure is booked for the day, and so it seems I will not be having a blood patch after all. “I’m sorry,” the nurse says, “I know you’re in a lot of pain. Has this been going on for a while?” I start to cry from sheer frustration as I tell her, “Almost seven months, I can’t take it anymore,” and I see her frown in determination, and something changes in her, and she squeezes my hand and tells me to sit tight.
My sister says, “Wow, you really weren’t kidding about this stuff being ridiculous. What is this, your second day of being in a hospital for a thing you don’t actually get to have done?”, and I text Gil to let him know what’s going on. Things are tense between us of course, due to the ongoing and seemingly everlasting negotiations over our divorce, but we are united in agreement on a few things: one, the importance of making things as easy as possible throughout this process for our kids, and two, his natural strength in advocating and arguing with fellow medical professionals. So I text him, and he calls me, and I tearfully explain today’s clusterfuck, and he kicks into gear, making phone calls and going what the kids and I affectionately refer to as “full Binenbaum” on the doctors involved in what’s not happening today. He harangues the neurology fellow to the point where I almost feel bad for her as she calls me to apologize for the mix-up, sounding close to tears herself, and he chops through a phone tree until he finally reaches a person from the pain department who can come see me and help figure out what to do.
The nurse returns, telling me that she, too, has been making phone calls, and has also talked to Gil, and that they are tag-teaming the higher-ups who might be able to fix this and make a blood patch happen today after all, and then a resident from the pain clinic comes in, seeming bored by all of this—my tears, my pain, my frustration, my hours of waiting—and says the best they can do is shunt me over to the doctor’s office across the street, where I can be interviewed and my case reviewed, and then they can schedule me for the procedure at some later date. The resident hands me paperwork, and a Post-it note with a phone number on it for the receptionist at the pain clinic, and leaves in a breeze of curtain swishing—but the nurse takes the papers from my hands. “I did not make fifty phone calls on your behalf today to have this happen,” she tells me. “You need this done, we’re gonna get this done.” She tells me she knows the head nurse at the pain clinic, who happens to be working today in the OR where the anesthesiology team is equipped to perform a blood patch, and that she will spend her fifty-first phone call of the day calling this head nurse to work some magic and get me in.
And she does. She makes the call, and while I can’t hear enough to know exactly what she is saying, I can hear the righteous anger on my behalf, the frustration and determination in her voice, and it makes me cry all over again to hear her fight for me. And then she is back, discharge papers in hand, telling me to change back into my street clothes, that she will escort me across the street and deliver me in person to the nursing staff at the chronic pain department of the hospital for neuroscience, where the head of anesthesiology himself will fit me in as the last case of the day. My sister helps me fill out the release forms, I lie down after getting dressed until the nurse can take us where we need to go, and then we walk outside, me unsteadily, slowly, supported by the strong arm of the nurse, the sun bright in my eyes after hours inside, and reach the pain center—oh, if only there were a center to my pain, some eye in this storm—by 5 P.M.
“Is this the one you told me about?” the nurse’s friend asks. “You poor thing! Let’s get this taken care of!” My nurse hugs me and wishes me well as she heads back to the other part of the hospital, hopefully finished with her endless phone calls and patient advocacy on my behalf for the day. I’m quickly ushered to a bed, changed again into the ubiquitous backless gown and skid-free socks, visited by several anesthesiologists and nurses, and asked to go over my history yet again. Everyone is cheerful to me, apologetic, reassuring. The head anesthesiologist says he will attempt to do this blood patch a little higher than my first one, but of course he can’t perform the patch too high, even if it might be more effective, because of the risks involved. I understand; I would not like to be paralyzed, even if it might cure my headache. The anesthesiologist explains they will use fluoroscopy to be able to visualize the epidural space in my spine and make sure they are in the right place, able to inject the blood without piercing the dura. They will paint my back with lidocaine, place a catheter in my spine, fill a needle with the blood they collect from me, and push it in. The anesthesiologist examines the backs of my hands, smooth and veinless, and looks longingly at Jessie’s hands, snaking blue bulges visible to the naked eye even from his vantage point across the hospital bed. “I’ve been waiting around since about 9 this morning and haven’t anything to drink,” I tell him. “It will be impossible to get blood from my hands. What about my arm, inside my elbow?” He considers this, but says they’ll be able to do it—if necessary, they can use a vein finder, a special light that illuminates the blood vessels. He disappears and is replaced by a different pain management specialist, who promises me something he calls a fentanyl cocktail during the process. Once they get the IV placed in my hand and extract the blood they need, they’ll pump me full of pain relief. This sounds heavenly, so exactly the opposite of my first blood patch experience, that I could cry. “But try not to,” my sister says. “You’re already so dehydrated.”
Soon I am wheeled to an operating room, then rolled over from my back to my stomach onto a table. My head has a pillow placed beneath my chin, my left arm is extended and fitted with a blood pressure cuff, plastic tubing is draped below my nose, vents beneath my nostrils whispering oxygen into my face. My right arm is extended, and a team of gowned and masked medical people peer at the back of my hand, searching in vain for veins. My hand is massaged, squeezed, lightly tapped, lightly slapped, while cold lidocaine is applied low on my spine. “I’m one of those people who needs more lidocaine than normal,” I remind the anesthesiologist, and he assures me he’ll give me extra and wait a bit longer for it to settle in. “You might have better luck with my arm,” I tell the people clustered around my hand, who are now turning the lights low and searching for my veins with the vein finder, but they seem not to be listening to me. The pain management guy who’d promised me the fentanyl cocktail says they can’t do it until the IV is placed, and the hand IV is proving quite difficult. The group of doctors managing the IV keep massaging and slapping my hand, while the other half of the group of doctors hovers around my lower back, beginning the process of pl
acing a catheter in my back and injecting me with contrast fluid. This will help them visualize the spinal epidural space as X-rays are continually passed through my body and broadcast to the fluoroscope, a TV-like monitor where they can see a real-time vision of what’s going on inside me.
An IV is finally jammed into a vein in my hand, but after several team members consult over it, the vein is deemed unproductive, and so the needle is withdrawn and painfully reinserted in a new spot in my hand. I’m grateful for the oxygen; otherwise I feel I might pass out from the stabbing in my hand, the twinge in my back. The second IV placement isn’t much more productive than the first, and two doctors massage and squeeze my hand to make the tapped vein offer up its blood. They need to inject 15 ccs of my own blood into the epidural space in my lower spine—but due to my dehydration and insufficient veins, they’re having trouble getting that much. The trick with an epidural blood patch is that the blood needs to be extracted and then injected more or less immediately, before it has a chance to clot. But all they can squeeze out of me is a few ccs at a time, and so they collect 5 ccs and inject it, then wait for 2 more ccs to accumulate and inject that, then wait for a few more ccs to be collected and inject that. This isn’t ideal, but they manage to collect and inject and collect and inject and collect and inject something like 11 or 12 ccs total. From my perspective on the table, inhaling oxygen and crying from the pain of my battered hand being milked for blood, it feels like a gradual filling up of my back until I can’t tolerate the pressure in my spine anymore, which means that it is over.
The Beginning of Everything Page 12