The Beginning of Everything

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.