A part of me keeps thinking Why, why did this have to happen, why did I have to ruin everything when I was so close to being out of the woods? Why am I back, stuck in bed again? Part of me keeps replaying the moment of the slip, the feeling of the wooden stair sliding from beneath the arch of my foot. Will this be the moment in time I will return to, hoping to undo by sheer repetition of thought, as the start of some new leak, or aggravation of the old one? But another part of me remembers what my piano teacher always said, about rest being an opportunity to prepare. You hurry, hurry, she’d told me. But there is time. Feel it. I have been hurrying, hurrying. This fall is forcing me to slow down, is giving me an opportunity to take the rest I need, to feel time instead of rushing past it.
If the defining feature of my nine months in bed with a spinal CSF leak was isolation and existential doubt, the focus of my nearly six months of recovery so far has been the strangeness of moving between the realms of the sick and the well. It’s not a linear progression, and even on the days when I have moments in which I can pass as being better, I’m not fully recovered, not yet. Every day I monitor my symptoms, scanning for clues that can tell me whether I’m healing or leaking again, whether I’m mending or tearing, whether I’ll have my life back or be back to being flat on my back in bed for life. What I’m learning as I recover is that recovering means forgetting, thinking I’m better than I really am, pushing myself to do more, tolerate more, force myself to forget I’m not healed so that I can force, in a sense, the inner work of healing. But falling down this flight of stairs reminds me I’m not ready to forget just yet. I should not be forgetting to acknowledge my need for carefulness, my need for rest. I should not be forgetting to honor the importance of small victories like sitting up all the way through a movie, or experiencing a few hours without a headache, or lasting an entire day without taking a nap. I still have more healing to do. I am not performance-ready. There is still more practicing to be done.
Remarkably, this ungraceful tumble down the stairs has bruised my ego and my butt, but not my spine. I move toward meeting my six-month milestone with bruises along a spectrum of deep purple to a nauseating yellow, but with no leak, or at least no leak symptoms. My wisdom tooth decides it has had enough, and tries to escape my head, the pain of which feels like a kidney stone in my jaw and reduces me to tears. Those old pain-scale questions from the headache center now suddenly have a true context: I have found my 10/10 pain, my worst can’t-go-on-living pain, and I gain a new respect for my old leak headache, which felt awful and omnipresent, but at least had the common decency to only ever reach a 9 at its worst. I have the tooth extracted, a process I’ve been fearing and putting off for years, and I sit tentatively, almost hovering in the dentist’s chair, my butt tender from bruising, my head on fire from tooth nerve pain, my neck and spine anxious to prevent flexion or stress on my dura. Afterward I’m given instructions to follow once I get home to care for the wound site, and these instructions are so thrillingly straightforward, so incredibly practical, so amazingly limited in time and scope, it is a true relief. I’m almost excited to go through this particular healing process, which at no point will involve any fear whatsoever that coughing or sneezing or bending wrong or falling down the stairs will cause my tooth to grow back and hurt me again.
My friend Nina’s path continues to diverge from mine. She suffers no fall down the stairs, no rogue tooth requiring extraction, and yet her slide back into leaking symptoms continues unabated. By the time of her six-month milestone, she is almost 100 percent certain she is leaking again. All of her high-pressure symptoms are gone, and the rhythms of her life have returned to what they were when she was leaking. The headache a heavy weight at the back of her skull, the fatigue and exhaustion and pain upon standing, the tinnitus and blurry vision, the brain fog. “It is what it is,” she tells me. “At least it’s better than being in that awful rebound high pressure. At least I know what to do when I’m leaking. That’s a comfort, at least.”
In July, a month after Emi turns 17, as I meet that six-month milestone, she and I take a trip together, the first big, sustained thing I have been able to plan and manage in over a year. She has just finished her junior year of school and is beginning the process of applying to college. She’s decided she wants to go to art school, and her top choices are Parsons, at The New School, in New York City, and the Rhode Island School of Design, in Providence, Rhode Island. She’ll be doing a three-week summer school program at Parsons, living on campus and taking classes, a kind of mini college experience, during the last three weeks of July. And so we decide to take a trip up to RISD the week before that, over the Fourth of July weekend, to tour the school and visit friends in the area. It is just Emi and me, the two of us having a bonding weekend together. It reminds me of the weekend she’d suggested we have after Nate’s accident, how she longed for some time together, just us, to help us heal from the trauma. This trip is also serving a healing purpose, the two of us connecting again, just us, in the aftermath of a different kind of traumatic experience.
We are traveling by train from Philadelphia to Providence, which means five hours of sitting, a marathon of sitting, the most sitting I have ever done at this point in my recovery. I plan accordingly. I bring my ice turbans and a travel pillow, plus a special angled pillow to sit on to help my back. I plan to take breaks, to stand up and walk the train aisles when sitting gets to be too much. I take a rolling suitcase Emi will be able to lift for me if necessary. I pack the medicines I might need: a diuretic my neurologist has recommended, to help with the high-pressure headaches I’m still dealing with; some lorazepam in case of sensory overload.
Traveling is stressful. I’d underestimated how much of my recovery and progress has been dependent upon the predictability and calmness of my daily routine at home. Here, out in the world, with so much new input, both visual and aural, my brain strains under the weight of so much heavy lifting. I find myself exhausted and overwhelmed, trying to put a brave face on it for Emi while also trying to find places to rest. But we manage to have fun, shopping in the deserted downtown mall, every place a ghost town due to the holiday weekend; laughing over trash TV and comedies at the hotel; gossiping over her social group’s summertime social media habits. We go to the school tour, and I stand through the introductory session, as I have had my fill of sitting after the marathon train ride. Emi and I both stand out: me due to my being the only person standing up, provoking confused looks from other parents, who gesture to open chairs as an offering for me to sit down; and Emi due to her hot-pink hair. I’d expected more startling hair colors at an art school campus tour, but so far we’ve only run into a few other kids with bold hair choices: turquoise, royal blue, a faded purple strand here and there.
We follow the group we’re assigned to on the tour, and the campus is beautiful, a tiny town of classroom buildings. Everything that is described to us about the course of study and the opportunities for students sounds amazing to me, and I keep nudging Emi like This is fantastic, right? But as the tour goes on, and we walk from un-airconditioned building to un-airconditioned building in the hot sun, we both begin to feel ourselves flagging. We sit down at one point, while the rest of the group explores a classroom, and I ask, “What do you think? Pretty incredible, yeah?” And she half-smiles and says, “Yeah, I don’t know. It’s awesome, but it’s not in a city. I think I might want to be in a city. Like, a real city.”
As the tour group is led across a green space that is touted as some kind of social gathering spot, Emi leans on my shoulder. “Wanna get out of here?” I say, and she immediately agrees. She’s hungry and thirsty; I’m tired and need to lie down. So we loiter behind the rest of the group until we are free to break off and go our own way unnoticed. We find a restaurant nearby and get some food and drink. The restaurant is set up so that the tables are next to deep, long, built-in benches, stacked thick with cushions. I’m so tempted to lie down, and Emi says, “Just do it! You’re exhausted!” So I ask the server if
it’s okay if I lie down on the bench for a minute and she looks at me like I’m crazy for even asking and tells me to go for it. We eat our lunch and I lie on the bench, propped up with pillows, recuperating before we head back out into the sun and find a taxi to return us to the hotel.
The next night we visit friends for dinner, friends we’ve known since Emi was twelve or thirteen, who live nearby. I rest all day so I can be ready for the noise of teenagers excited to reconnect and catch up in person, plus the competing din of grown-up dinner table conversation, and once we get there, it is a comfort to see them. I’ve explained a little, via email, about what’s been going on with me, and with our family, over the past year or so, and so it’s not so hard to talk about. I’ve also become better at being a narrator, about understanding which details are important and which are irrelevant to what a listener wants to know, about being able to tell my story, our story, without saying more than I need to or more than someone is ready to hear. I’m grounded in a timeline now—the flu, the cough, the pain, the diagnosis, the treatment, the halfway point, the prognosis—rather than lost in a muddle of context-free facts and feelings and uncertainty. And things aren’t as raw, as new, as painful. I can talk about the divorce as a matter-of-fact thing, about all of it as a matter-of-fact thing, and it all feels, if not understandable, at least able to be understood.
We end our trip by traveling back through Boston, where we are able to spend time with one of my aunts and with my grandmother, Emi’s great-grandmother. Nina, my leaker friend, lives outside of Boston, and I threaten to meet up with her, too, but she says no, I shouldn’t bother adding another leg of travel to this already big trip. “When we meet, it’s going to be when we are both fully sealed and healed,” she tells me, “that’s the plan!” Her daughter also went to art school, to RISD, in fact, and now lives and works in fashion in New York City, and Nina’s other plan is for us to meet her when Emi goes to the summer program at Parsons. And we do: Barely recovered from our big trip to Providence and Boston, I travel with Emi to Parsons a week later, to set her up for her three-week summer school course, and we have lunch with Nina’s daughter, Nina Skyping in from bed to say hi. “Next time we do this, we’ll all be there in person,” Nina says, and I concur.
Emi thrives at the Parsons summer session, finding her way in to understanding and expressing her experience of the last year and a half of upheaval in her life through a photography project she undertakes. Her anxiety series of photos captures the claustrophobic, dissociative feeling of panic attacks and disintegration, and she has a breakthrough, not just in finding a new way to process everything she’s been feeling, but in transforming those very personal feelings into something artistic and universal. She, too, is becoming better at mastering a narrative, at learning how to tell the story of her life. Her photos provide a context, an entry point for understanding, a way in. She’s no longer just taking pictures. She’s making sense of a process. She’s making sense of herself. She’s making art.
In the fall, after school resumes, when she’s in the thick of the college application process, I take her to National Portfolio Day, where representatives from all the major art schools across the country come to a city and evaluate the portfolios of prospective art school applicants. She meets with reps from six schools, including Parsons, and all of them are impressed by her anxiety series. All of them mention her excellent use of light, of perspective; her remarkable understanding of how to center herself in the dramatic moment, to frame a scene; the cinematic sensibility she brings to her photos. She speaks with the Parsons rep longest of all, maybe forty-five minutes of critique, and comes away from the experience feeling heartened by the feedback she receives. She adjusts her portfolio, tailoring each submission to the comments she received from the school representatives she spoke with at the event, and finishes her applications far ahead of deadline. She has decided, after her summer experience there and the great feedback she got from the rep at National Portfolio Day, that Parsons is her top choice, and she submits her application early, even though she’s not applying for early decision. And yet, within weeks she is notified that she is accepted along with the early decision applicants, and is awarded a generous scholarship. Her voice on the phone when she calls me from school is shaky, filled with wonderment and disbelief. She’s done it: She’s in. Her top choice chose her. My voice is shaky, too, filled with pride, filled with gratefulness to see her begin to emerge on the other side of this awful period of uncertainty.
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 my chest is worse. I know what the signs of a heart attack are, and I know they can be especially subtle in women; but I think, How ridiculous would it be for me to have a heart attack right now, when I’ve just taken blood pressure medicine? I check my blood pressure and am surprised to find it to be very low. Wouldn’t it be high if this were a heart attack? I wait it out a little bit longer, but my chest tightness and heaviness continues, and it becomes harder to breathe, and I begin to feel a weakness in my left arm. I begin to type chest heaviness tightness arm into Google, and before I can even finish, results are populating, all of which seem to be some version of Get to a hospital, you’re gonna die. I know that Emi is planning to have a difficult conversation with her dad tonight, that she may need to talk to me afterward. But I don’t think I can wait until then. I summon an Uber and direct it to the nearest emergency room, figuring that if this is nothing, they’ll just send me home after my having successfully wasted everyone’s time. But when I get there I discover two things: one, that telling the intake person at the ER “I think I might be having a heart attack” gets you bumped up to the very front of the line; and two, that it is not a waste of time.
The Beginning of Everything Page 26
