In a week or so, it’s all returned to me, in an envelope with a Duke return address, no cover letter, no note, just all the information I’d sent them sent back to me. I wonder whether or not this means they have rejected me as a potential patient. Maybe my scans are as unremarkable to Dr. Gray’s team as they are to everyone else who’s seen them. I consider calling Horace to find out if there’s anything else I need to do, but then just before Christmas, I get a phone call from one of Dr. Gray’s associates, Dr. Kranz.
It’s evening, I’ve been lying on the floor of the family room with the kids while they watch TV, and so I go upstairs to take the phone call in the half darkness of the living room, lying down again on the couch, so nervous my teeth are chattering as he asks me to give a synopsis of my history, so relieved to hear him tell me that, after looking through my information and reviewing the scans and hearing about my symptoms, he thinks he can help. Not just help my symptoms, but possibly, hopefully, seal this leak. This seems almost impossible to believe, and I try hard to keep my voice steady as I ask, “Are you sure?” But he is sure.
He tells me a scheduler will call in a few days to set up a time for me to come there. It’ll be a two-day outpatient procedure—some diagnostic tests performed on the first day, then patching treatment on the second—so I should plan to stay in a hotel near the hospital. It will take several days afterward before it will be safe for me to travel home. I should budget for a four- or five-day stay total, conservatively, if everything goes well.
He tells me about a private Facebook group that exists for people dealing with CSF leaks, many of whom are in the process of being treated at Duke, or who have already been treated at Duke. He recommends joining and reaching out, looking there for recommendations about hotels and travel tips, and reading through people’s experiences of their procedures at his clinic. He tells me the group was founded by patients, and that while he himself isn’t personally a member, he knows that it functions as much as a source of information as a source of support and camaraderie. I’m not much of a joiner, or a group person, really, but something about his earnestness makes me jot down the info in the scribble of notes I’ve been taking during the call, makes me promise to look into it, makes me promise to join. I am teary with thanks by the end of the call, and nervously exhilarated. For the first time in a long time I’m feeling a thing I thought I’d forgotten how to feel.
Hope.
24
I used to be an early adopter. My dad, a computer guy by vocation and avocation, let my grade-school-aged sisters and me fool around on his just-for-fun Radio Shack TRS-80 long before most people had machines in their homes. I remember popping in cassette tapes of computer programs, the day he showed me the wonders of 10 PRINT “HELLO WORLD!” 20 GOTO 10. I was on the internet back when it was called the Web, capitalized, and always proceeded by the words World Wide; on forums back when they were still called bulletin boards; in instant messaging groups back when they were still called chat rooms and no user ever used their actual name as their user name. I posted, I lurked, I surfed; I eventually forsook Lycos and Infoseek and AltaVista for something called Google. I blogged.
But after Nate’s accident as a toddler, I mostly stopped writing on the internet about my life. It was an abrupt thing, at first, in the wake of what had happened; and then a gradual thing, a choice I made to curtail the amount of information I shared and the frequency with which I shared it. I was conflicted about writing about motherhood online as my children grew older, anyway, and the stories about my life with them no longer seemed solely mine to tell. Eventually I stepped back, as the demands of my non-virtual life eclipsed my internet-based one, and, for the first time, let technology pass me by.
I watched as social media transformed the internet into an entirely new space, one where real names were the norm and anonymity was the odd exception. Where the ubiquitousness of internet-connected phones and specialized applications made networks of consciousness emerge, real-time communities forming around world events or even local events. I watched from a distance as my listserv friends became Yahoo Group friends and then Gmail friends and then MySpace friends, and then Facebook friends with each other; began vlogging instead of blogging; joined a thing called Twitter, a thing called Tumblr, a thing called Instagram, a thing called Pinterest. I watched from close-up as my kids began to participate in their own subset of the internet. I joined Twitter in 2010, as a capitulation to the reality of publishers encouraging authors to have some sort of social media presence. But other than that, I stayed on the sidelines.
And so, when the doctor from North Carolina suggested I join the private CSF Leak Facebook group, I’d hesitated. I’d resisted the urge to assimilate for ten years—could I really relent now, after all this time? And yet it sounded as though this community he’d mentioned could prove to be extremely useful. The little internet searching I’d done had yielded forum posts here and there, many of them years old; nothing like an active community of users, sharing current information and support. How amazing would it be to find other people going through what I was going through—how amazing would it be to feel less alone? The thought of that reminds me of the early days of writing about motherhood on the internet, connecting with other women all over the world, all of us writing in isolation about what turned out, we discovered, to be a profoundly shared event. And so I tentatively decide to enter the vortex, submitting to the social media behemoth that seems to now define the modern online experience, and finally joining the rest of the world on Facebook. But I do it the way it used to be done in the “olden days” of the internet: under a pseudonym.
The CSF leak group is instantly welcoming, and at first I mostly lurk, reading through the files and documents that members have compiled over the years containing everything from people’s personal stories about living with CSF leaks to tips about travel, hotel information, which numbers to call, which doctors are responsive, links to medical journal articles and informative websites, suggestions of things to bring with you when you go for tests and procedures, people’s experiences with those procedures. The sheer amount of practical advice about how to manage daily life when you can’t be upright for long makes the group worthwhile: I learn about the benefits of Spanx and other compression clothes, which kinds of caffeinated drinks have the most caffeine, what foods can affect intracranial pressure, how you can save yourself from the grossness of lying on a doctor’s office floor, or a floor anywhere you have to go, by bringing a yoga mat with you, a small travel pillow, a light blanket.
The board is full of stories. Everyone has a narrative they’ve honed, after telling it to doctors for years, in some cases; but there is a relief in telling this particular kind of story to a group of listeners who know exactly what you’re talking about. The people here know all the plot twists—the failed blood patches, the skeptical doctors, the havoc wreaked on marriages, on families, on careers; the arcane variations—underlying conditions like Marfan syndrome, like Ehlers-Danlos syndrome, like postural orthostatic tachycardia syndrome, like Chiari malformation, like idiopathic intracranial hypertension, like having shunts placed and having your dura shaved down, and pieces of skull removed; the dark nights of the soul—hopelessness and depression and pain, addiction, distress, job loss; and the possibility of happy endings—those who are “sealed and healed” and return to the boards with tales of strange worlds: sitting upright without a headache, being able to think and work and exercise and live the way we all used to in the Before Times.
The worst-case scenario stories scare me; the happy-ending stories give me fragile hope. I lurk and read and come to recognize the daily posters, the regulars, those who always encourage no matter how desperate their own situation, those who are desperate beyond all encouragement, those who are struggling, and those who are able to help in the midst of their own struggles. Despite my natural shyness about joining groups in general, I come to see that my story is a story like many others there, that I belong there, and so I post
and I am welcomed. I comment and receive “likes.” I adopt the vocabulary of the boards. I am a leaker. I make friends with another leaker whose sense of humor always comes through in her posts, who’s scheduled to be treated at Duke just weeks after I’m going to be there. We begin to message each other off-site, through Messenger and then via text. She used to be a lawyer; I used to be a writer. We are brain-compromised; there are typos, run-on sentences, confusion. And yet we understand each other.
There are characters in this group, like in any online group. One guy who joins the group around the same time as me is somewhat my opposite: He joins under his real name, he’s gregarious and outgoing, and posts videos of himself almost daily. His videos are sometimes funny and sometimes sad, as he shares his frustration about this new constant headache he’s battling and the lack of help he’s getting from the doctors he’s seeing. He isn’t sure he has a leak, but everyone on the board is sympathetic to his situation, as everyone on there, old-timers and newcomers alike, knows what it’s like to be in pain and not be taken seriously. Miraculously, he manages to get an appointment at Duke only weeks into his strange headaches, and weeks sooner than many of us who called far earlier and are still awaiting our appointments. There are some people on the board who have suffered with their leaks for over a decade. Others have been treated multiple times, undergoing surgery after surgery, and are still not healed. Others are in the process of recovery, but even those optimistic posts are tentative and full of doubt. So we all watch with curiosity and excitement tinged with a little bit of envy as we follow his progress: his journey to Duke, his test results, the disappointing news that no leak was seen on his imaging, the perplexing news that the doctors there do not think he has a leak at all, that his headaches are caused by something else. “I’ve loved being a part of this group,” he says in one of his last videos. “I may still hang out here while I figure out what’s going on with me.” Everyone encourages him to stay, to keep sharing. The videos of him sitting upright, walking around, being vertical, being goofy, cheer everyone up. But he doesn’t end up sticking around for too long.
Later, this guy will ask to video chat with me after I return from Duke, to talk to me about my experience there, and I will, even though I am high on opiates and weighted down by the steel pipe that is my spine, filled with blood clotting along my dura. “I hope this is it for you,” he will tell me, “I really hope you’re healed. And if you are—man, just run away from this group, from all these groups, and don’t look back.” I think he means to convey some kind of message of empowerment, like, If you’re better, stay better, and don’t dwell on the past once you’re headache-free; but still, it sounds ominous. I understand his longing to not have to identify as a sick person, as a person belonging to a group of sick people. And I understand how these things work: The people who heal, who recover, eventually leave; the people who are struggling stay. Sometimes people who recover end up relapsing and return to the group. Sometimes people who are recovered find it hard to leave the community that’s been such a part of their lives for so long, and become mentors and cheerleaders of a sort, posting hopeful messages, providing support. But after going through this by myself for so long, this community feels like a balm to me, not a conflict, not a burden. Not someplace to flee.
Just after I get the call from Dr. Kranz, about a week or so after I join the group, I get a letter in the mail, a thick envelope from the City of Philadelphia. I know what it is before I open it, but it’s still a shock. My divorce is final: These are the papers making it official. I text Gil to let him know that it’s here—he was sent his own copy, at my address, formerly our address—and he comes over to get it.
“This is it?” he says, and I say, “This is it.” We both hold our separate copies of the divorce decree, standing in the foyer as the kids sit in the other room, doing homework, listening to music. Neither of us is sure what to do—what’s the protocol, after all, for the official ending of a twenty-year marriage, the transition from life partners to co-parents?
“Well, congrats, I guess,” I say, and we both kind of laugh, and then we hug each other, tearfully. This is the right decision, we have both agreed. But still it has been a hard decision. It feels bittersweet to suddenly, officially, be on the other side of this process.
“Congrats,” he says, before leaving.
Within weeks, I will be removed from our health insurance, just in time for my trip to Duke.
25
There is more space when it’s just us, the three of us, me and Emi and Nate. Gone are the piles of mail and unread medical journals, the boxes of papers, the hoard of things to be organized, the task of organizing them put off and put off until finally the hoard is just a hoard, a series of towering piles inside a room that used to be a bedroom but now is a holding place for this stuff that hasn’t been looked at for years. Now that room is a bedroom again, now the piles and files and papers and boxes and clothes and the unfiltered history of a life has been transported to a new house, a new place for it all to take root, to vine, the pruning of which is no longer my problem.
The day he moved out, I’d wrapped myself in layers of compression—bike shorts over bike shorts over Spanx—to force my cerebrospinal fluid upward, giving me buoyancy, and I’d walked to a store to buy curtains for the living room. It seemed, to my half-functioning brain, the right thing to do. I needed to absent myself from the scene at the house, the movers and his parents there physically dismantling the proof of our cohabitation, the literal removal of him from our shared space. I needed air, I needed space as the emptiness of the house slowly revealed itself, as his parents quailed with emotion I wasn’t up to the task of managing, as he and I gamely agreed upon last-minute questions of ownership over small items we hadn’t considered until now, when we were faced with the prospect of losing them.
We’d lived in the house for seven years by that point, and we still didn’t have curtains in the living room. It’s true that the light was nice, that it was pleasing to have the sun streaming through on bright days, that even when it was overcast the room was filled with light, that that side of the house faces a narrow street not much larger than an alleyway, with no neighbor windows looking into ours. But the real reason we’d never gotten curtains was that he’d wanted to be a part of the process of choosing them, and he’d never had time. I’d bought some once, just simple, inexpensive things, just to have them, just to try, but he’d vetoed them; he wanted to choose them together, and we would do that someday, when he had time. But he never had time. For seven years.
I walked to the store, walked away from the process taking place of our house becoming my house, and felt my head throbbing with every step. I said curtains to myself, over and over, so I wouldn’t forget my mission, and then I was there, in the store, surrounded by all kinds of pleasing furniture, all arranged with no piles of mail on the tables, or clothes on the floor, or papers covering every available surface. There was no realistic tableaux of how a busy person might actually use these furnishings, and I realized that was because this was aspirational, a showroom floor, a kind of lie about real life; and yet I also wanted to aspire. I found the curtains I wanted, found four packs of them for the living room windows. There was some closet at home, I was sure of it, that held fixtures for hanging, purchased long ago during one of my attempts to make curtains happen, before I’d given up. Around me, in the calculated beauty of simulated living rooms, anxious couples bickered about rugs and end tables, men sat defeated on couches, women rolled their eyes as they stalked off toward the dinnerware. By now, at home, the furniture he was taking with him to his new place must be loaded up into the truck. At some point I would have to come back here and pick out a table, all by myself, no partner to argue with about the virtues of chairs versus a long bench, midcentury modern versus rustic. But the curtains were the first step, for now. I took them to the counter, and the woman asked “Will that be all?” and I said, “That will be everything.”
Now the cur
tains hang in the living room, now there is a table with benches instead of chairs in the dining room, now the house is emptied of papers and boxes and tension. In some ways, the space of just the three of us reminds me of when the kids were very little and he was in medical school. Some weeks, it would just be the three of us for days at a time, and during the rare moments he was home, he was either asleep or studying, so he might as well have been gone, as the daily routine of toddler and preschooler life continued, immune to his presence or absence. In those days, like now, I was alone with them most of the time, and there were no vacation days, no sick days, no days off. I was on a permanent, 24/7 call schedule, and if I had limitations due to my own work that needed to be done (somehow, in the brief moments when they were asleep) or due to illness, I had to get creative.
One particular winter, when I was incapacitated by the flu and a nagging back injury, exacerbated by picking up a squirming toddler, I came up with a number of what Emi and Nate called “lying down games” to help fill the long hours of solo parenting. One of these games, which we called “Covers,” was played as follows: 1. Lie on the bed, then pull the covers up over everyone’s heads while everyone yells “Covers!” 2. Stay under the covers as long as possible until one of you panics and yells “No covers!” 3. Repeat until weary. Another big hit was “No-Water-Bath,” which involved playing with toys in the bathtub without any water—the bonus for the incapacitated adult being that there is no slippery child to have to pick up afterward, plus the relief of being able to lie on the cool floor of the bathroom, occasionally interjecting statements like “Uh-huh, that’s great!” or “Wow!” to fulfill your role as Game Master. “Tiny Swimming Pools” was also a favorite, requiring only a non-wood-based floor and every shape and size of plastic container, filled halfway full with water, for them to have their tiny toys swim in (bonus: clean floor afterward). And then there was Nate’s invention, “Surprise Toys,” which required me to lie down on some comfortable surface and say, “I really hope nobody comes over here and puts their toys on me while I’m taking this nap! That would be quite a surprise!” and then pretend to fall asleep while he and/or Emi placed small toys all over my body. Then, after a blessed five minutes or so of rest, with them barely able to contain their laughter in anticipation of what would come next, I would have to “wake up,” realize that there were small toys balanced all over me, and say, “What?! Oh no! TOYS!” The game would end when, in that moment of pretend toy-panic, the toys would become dislodged from their positions and fall off me. And then, of course, it would start again.
The Beginning of Everything Page 14