The basic point, though, is that since I’m not having pain in my arms or hands, or weakness, or any other symptoms other than this pain and brain fog due to the CSF leak, he doesn’t think it’s worth the risk of surgery to go in and fix either of those things. Especially since the surgery would leave me with a very limited range of motion. In fact, he doesn’t think this stuff has anything to do with the leak. He says my vertebra dentata isn’t toothy enough to have bitten through the dura, that while my weird neck situation could theoretically compress a nerve and cause occipital pain, similar to the low back-of-skull pain I have with this leak, my symptoms are more in line with a CSF leak than nerve compression. He says that a shot of pain-relief medicine called an occipital block could possibly help with my pain levels—but only if my occipital pain is actually due to this issue with my neck and not due to the low-pressure headache of a leak. Neither of us think this is a viable option for me, as it seems clear my pain is from the CSF leak and not from my strange neck situation, which was a secret only revealed in the hunt for the cause of this leak. He doesn’t have any advice about the leak, or even any experience with CSF leaks, and suggests I follow up with some headache neurologist out in the suburbs who also doesn’t have any experience with CSF leaks, so I thank him and smile politely but I understand that this is a dead end.
He’d laughed when I told him the story of my failed flip, how I stuck the landing right on the back of my head, how the first thing I said after I stopped crying was “We can’t tell mom,” how I didn’t go to the doctor, just got some aspirin and went to bed. He’d said nowadays people are so jumpy they even take their pets to the ER, but back in the day you just did whatever and it was no big deal. Third-degree burn? Put some butter on it. I was lucky; I could have died. We were all lucky back then.
There’s a CSF leak expert at Cedars-Sinai in Los Angeles. I found him through googling things about CSF leaks, things that usually led me to links for either abstracts of worst-case-scenario medical papers or sobering bulletin-board tales of years-long suffering posted by people who call themselves “leakers.” There was a Q&A with this expert on one of these sites, and his name came up a few other times in my searches, usually in the context of being the doctor of last resort, the doctor who finally put all the pieces together and, sometimes, even fixed the problem. I am tempted to try to meet with him. I don’t know whether my leak is leaky enough, if my case is bad enough to merit a last-resort doctor, if I am suffering enough to call myself a leaker. But if this leak really is still leaking, I need one person to oversee all this and figure out what’s going on, rather than going from doctor to doctor to doctor, each with their own small piece of the puzzle that doesn’t make sense in isolation.
Maybe I’m not still leaking, maybe the dull pain on my left side that feels just like the leak pain on my right side is a random thing, maybe I just didn’t want hard enough for this blood patch to work, maybe I didn’t hope hard enough or rest hard enough or not rest hard enough, maybe the stupid fortune-cookie fortune I got a few weeks ago was right when it said, “Enthusiasm can change the current situation.” A part of my brain rejects that, floating up a thought that says Fuck that fortune-cookie fortune, but who knows if I can trust anything my brain tells me right now. I can’t trust myself to make decisions. And yet I have to as the doctors shrug, as the neurosurgeon says my guess is as good as his, as Gil comes to my room to ask what to do about the kids, dinner, the messy house. Your call. You decide. Up to you.
14
This is not the first time I have been a difficult patient.
It is early fall 1990 and I am nineteen years old. I am sick, and no one knows what’s wrong with me.
The gown gapes at my back, the crinkly examination table paper chills my bare thighs, my sockless feet swing in the silence. The rheumatologist paces a little as he thumbs through my file, and I stare out the window, wishing I could be outside, away, anywhere but here.
Everything is green here. The bus ride from Boston was a journey from gray and brown and brick-red to the dense green of trees forested together, the sun-polished green of well-kept lawns, the shifting green of leaves slowly being invaded by fall: the color of the suburbs. Arriving, I found the office tucked away like a witch’s house in a fairy tale, shaded by thick, tall trees, marked by ivied walkways, a moat of luxuriously bright flowerbeds offering a ring of protection.
The thin paper crackles as I shift my weight, and the rheumatologist looks over his glasses at me.
“Why don’t you get dressed now, and we’ll chat in the other room when you’re ready,” he says. He’s old and soft-spoken. He must be somebody’s grandfather. His hands when he examined me were so gentle, yet firm; careful. The thought of that kindness makes my eyes sting as I put my clothes back on.
The other room isn’t like a doctor’s office at all. It’s more like a room in somebody’s fancy house, like a library, with low leather chairs, floor-to-ceiling bookshelves filled with burgundy and deep-green leather-bound books, dark wood grain everywhere I look, grand
