Feb., 2010
I came to on the floor in the worst pain I'd ever been in, nauseous and dripping with sweat. I didn't know how I'd got there or what had happened. While trying to haul myself into a sitting position, I passed out again and collapsed back to the floor, gasping and whimpering because I couldn't even cry.
This wasn't a headache. Most people are discomforted by headaches and can largely work through them. This was passing out every time I turned over in bed; this was the feeling of a grenade exploding inside my skull every time I breathed; this was wanting to cry every time my eyes moved in their sockets but being too afraid to do so. Or so my parents told me later. I don't remember anything. I remember leaving the hospital, then I have essentially no memories at all for the next three weeks; the weeks following that are spotty at best.
We had no idea what was wrong. We knew that I'd probably have a headache the next morning, but this was more than that. None of my discharge paperwork mentioned anything of this magnitude; they only recommended taking it easy for a day or two. There was no mention of "if symptoms x, y, and z occur, go directly to a hospital." We phoned my neurologist, but they were closed from the storm. Same with my family practice doctor. My parents decided to hang on for one day until the worst of the storm was over, then re-assess.
The next day came. And then the next. And the next. My condition continued to worsen. I was throwing up and blacking out at the same time; I couldn't keep water down; I couldn't so much as move my legs in bed. I couldn't sleep, I only dozed in and out of consciousness all day. And we were snowed in. Mom couldn't shovel snow because she'd just been diagnosed with cardiomyopathy. Dad had only broken his knee four months earlier and was adjusting to crutches after months in a wheelchair. Alex was away at university. There were multiple feet of snow, and the second batch of Snowmaggedon was due the next day. If we had to make a dash for it, it was now or never. Dad phoned his brother and begged him to come over, help dig us a pathway out the house, and drive us to hospital. Uncle Bill showed up, and off we went.
Lesson learned: never go to Potomac Hospital in Woodbridge ever again. And if one needs admittance to hospital for something that's truly an emergency, don't drive yourself in, call a fricking ambulance. Signed in and went to curl myself into some form of fetal position ball in one of those chairs that doctors' offices have that somehow are the most uncomfortable chairs in the world. Check-in staff ensured I'd be seen right away with such intense head pains. Six hours later, I still hadn't even so much as seen a triage nurse. Sobbing and passing out all at once, I begged to simply go home. Sitting in hospital. being forced to sit rather than lie down, made me feel a million times worse. Uncle Bill drove us back home, and I collapsed onto the sofa in the living room, which became my bedroom for most of the next few weeks until I was "okay enough" to go home.
Next morning, we call my family practice doctor. He's treated all of my family for a good ten years now; he looks like Jeff Goldblum, has a wicked sense of sarcastic dry humour, and totally gets how weird my family is. He says that he doesn't have any openings today, but to get in here or else, and he will see me the minute I get in. There's a pitch black room with an exam bed ready when I get there, and Mom said I was back in the exam room and Dr L. was in to see me within three minutes of us arriving. Mom and Dad explained my symptoms. Dr L. listens, says "you wait there two minutes. I'm going to make a phone call," and comes back in five minutes with a prescription for a blood patch procedure at Prince William Hospital around the corner. He told us he suspected that the botched part of the spinal tap had caused a major leak of my CSF fluid out of my spine and probably into my lymph system somewhere. Because I had no CSF fluid in my spine, there was no CSF to protect my brain inside my skull - the fluid that lets the brain 'float' inside the skull without resting on the base of the skull and the top of the spine, and that cushions it from knowing around into the skull. Every time my I moved, my brain moved, causing traumatic bruising to my brain itself; every time I was sitting or standing, my brain rested directly on top of my spinal cord.
Around the building we went to the hospital. At least they had softer, two-person 'armchair-style' chairs in the waiting areas while Mum filled out my paperwork and then while we waited in the phlebotomy labs. The team took me in immediately - in the middle of a blizzard, they didn't have much to do, thankfully. For the first time in my life, a doctor fully explained a procedure to me, including the risks from the procedure, side effects, and what to watch out for in recovery. Essentially, the procedure was using one of those new fancy digital x-ray machines to find the exact location of the leakage, drawing a few vials of blood from my arm, mixing the vials, then injecting the blood directly into the hole as an internal plug. Of course, I was terrified at the concept of more needles in my spine since the first experiment hadn't gone well, but the nurses and doctors on the team were kind and patient and took care to let me know what was happening the whole time. They said the whole procedure took less than ten minutes, and then left me in a darkened room to take a nap and lie still for two or three hours while the blood clotted inside the hole.
After my nap, for the first time in a week, I sat upright without passing up. It still hurt like a motherfucker, and I had to lie right back down, but I sat up. I sat up in the wheelchair while they pushed me to the car. The doctors told me I still needed to spend as much time as possible lying down while my body produced more CSF to replenish what I'd lost. It could take a week or two, it could take six to eight weeks - no one had any idea how much I'd lost so it was impossible to tell. The next three weeks I only was upright long enough to get to the bathroom or the kitchen and back, a total of maybe 30 steps four times a day, and even that was pushing it. There wasn't enough CSF yet to protect my brain, which was still smashing around inside my skull and bruising every time I moved. Again, I don't remember any of this. I know I spent three weeks on the sofa not getting better, but the human brain in pain is remarkable at completely ceasing creating and storing memories.
Three weeks later, I wasn't any better than I was the day after the blood patch. Dr L. recommended a second blood patch. This continued my apparently life-long trend of being a medical mystery, because the rates of requiring a second blood patch are somewhere in the neighbourhood of 1%. The team at PWHospital had never heard of anyone requiring a second procedure. But they performed it, I laid around for another multi-hour nap, and was sent home again with the same orders.
Fast forward another month-ish. I've migrated back to my own apartment as things have improved, but I'm not significantly better. I'm still totally confined to be bed. It's my last semester of graduate school and I'm supposed to be taking my comprehensive exams in a week. I haven't been to any classes in a month. I haven't studied a single bit because I wasn't able to hold up a book to read and anyway reading hurt my eyes so bad that it made me pass out. Luckily, I my grad advisor and the department head rock, and they let me take the exam from my bed. Somehow, I passed, and dragged my ass around the corner to the local pub to celebrate with some classmates - it was the first time I'd been "out" in something like six weeks. I had maybe a glass of water and a couple bits of nibbles, then decided getting up had been a gigantic mistake, and went right back to bed.
I managed to graduate on time, even making it to a couple of my lectures before the middle of May. I attended the commencement ceremony because Nana had flown all the way over for it, and because Michelle Obama was scheduled to give the commencement speech. I think she gave the speech; I don't remember. My memory was still completely shot; I knew things were happening in my life, but for whatever reason my brain simply couldn't process any of them into my memory. I guess my brain was too busy trying to not die or something to worry about anything else.
Because I'm still not really getting better. The pain is still terrible. It's beginning to change, but it's still unbearable, to say the least. The pain isn't lessened by lying down or made worse by sitting or standing or moving; it rages along at a constant level. The blacking out has largely gone away, but the pain is still making me nauseous to the point where I can't eat much. And the pain is spreading from the back of my head, right at the base of my skull, down into my neck and into my shoulders. The muscles have become so sore and painful that they're contracting into place and cannot relax, turning me into a veritable hunchback who can't move my neck, shoulders, or upper back. The whole area is tender and uber-sensitive to pressure or touch. It's been two months. Why am I not better? Why am I not feeling even a bit better after six weeks?
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