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
