Each morning, through a slit between my eyelids, I peak to see what kind of headache I have. Often, that quick glimpse is more than I can handle, so I close both eyes and let myself sink back into the reprieve that is sleep…for just another minute. If I wait long enough the pain that has built up in my head while I slept seems to subside, or if I’m late enough I say, “F- it” and get up anyway. In May while I was an inpatient at Chelsea’s world renowned Head Pain Unit of St. Joe’s, the nurse’s first question would always be, “How do you rate your head pain?” They had this 1-5 scale which took me a while to get down. One meant no headache. A two meant it was there if you looked for it. Three meant there was pain but you could work through it. A four meant doing daily stuff took some major effort, and five just meant “Pfwa! I’m dying.” Ok, so I don’t think that’s the clinical definitions of the rating, but it’s what I internalized so I could give an accurate response when asked.

You see, that’s my thing, I always want to be right, not as in louder and more bulldozery I- will-win-this-argument-at-all-costs kind of right, but correct, accurate, knowledgeable enough to be almost an expert at what I’m doing so I can be a leader, a teacher, the one you come to if you wonder about something. That’s Who I am. The way I made that happen was with work. I read a lot. I remembered a lot, and I was able to think a lot. My brain never stopped, and I liked it. I liked not having to have an answer key for the practice ACT test to be able to correct it and discuss it in class. I liked writing really powerful pieces that made people think and look at me as a writer.

Do you know that read is the same both in past and present tense? That fact is front and center because I just had to go back through and edit all of that last paragraph to past tense, because I used to read a lot, remember a lot, think a lot, and write a lot. Now I just hurt a lot, and it sucks because I can’t be the me I was and I don’t know who this me should be or what I should I do, and that sucks.

The first time we thought I was having a stroke was on the Sunday of Memorial Day weekend 2010. I mentioned that my right arm was numb and I felt out of it and I couldn’t find my words. After watching me sit still for a while (something I never do), my husband Webmd’d my symptoms and with a barely controlled panic, calmly got our 11 month old, 3 year old, and 5 year old boys out of bed and into the van all the while I protested that I was fine through slurred words. It wasn’t until the left side of my face fell, Bell’s palsy style, that I truly thought something was wrong. On the way to the hospital, I sat in the back of the van touching each of my kids, just in case this was real. The doctors at the ER ruled out stroke, but didn’t know what to say, so they suggested I stay in the hospital through the holiday weekend and get some tests and scans done when the lab opened for business on Tuesday. What? No. I had kids to mother and essays to grade, so I signed their discharge against medical advice (AMA) paperwork, and went home.

The second time we thought I was having a stroke happened a couple months later, and after a couple of hours in the ER, the symptoms subsided, my mind fog cleared, I recovered control of my words, and the baffled doctors looked at me suspiciously as if the whole thing had been a mistimed April Fool’s joke or something.

I got a neurologist who prescribed drugs whose side effects were the same as my symptoms: mind fog, confusion, dizziness, etc. They ordered every test from CT scans, MRIs, MRAs, blood work, EKGs, and the fabulous TEE where I swallowed some kind of camera that examined my heart from within my esophagus and dug a channel in my throat on its way back out. They couldn’t find anything abnormal, even when they superglued the EEG electrodes to my head and made me wear it for 24 hours.

Eventually, the diagnosis came as migraine aura, which just seemed asinine because at the time, I wasn’t even having headaches. I fumbled around with some drugs that made me act and feel like a zombie until I finally found the Michigan Head Pain and Neurological Institute. They came up with the idea that I had hemiplegic migraines which are episodes that look like strokes, prescribed Vivactil, an antidepressant that for some reason was working wonders with migraine patients, and I went on my way. I started getting regular migraines where the lights felt like needles in my eyes and any smell made me nauseous, but I was not going to let this shit stop me. I got some ugly purple migraine glasses and put a bunch of lamps in my classroom and I beasted my way through a few more school years. I experienced a couple more “stroke-like episodes” and crashing fatigue, but I barely missed school and I just kept going.

Until November 9, 2015. I was working out on the elliptical after school, just like I had been every Monday, Wednesday, Friday, when it felt like the right side of my brain exploded. I grabbed my head but just kept running. I didn’t even think to stop working out even as the pain increased. I just rubbed it and kept on running; my neighboring runner asked if I was okay, and, “Of course, just a headache” was my response. When it was time to join the circuit portion of the work out, I went right along with the group. It wasn’t until I looked wobbly as I hoisted the 20 lb plate above my head that the instructor came over. “I’m just little dizzy and my head hurts,” was my response to her piercing glance. She looked at me like I was crazy.

“Girl, put that weight down,” she commanded. I started to get nauseous then and realized it was probably a migraine coming on, so with that in my head, I quickly ran to my car and tried to get home.

Bad idea. The lights of the oncoming cars merged in my head and I had no idea what side of the road I was on, but by the grace of God and the skills of my guardian angels, somehow I made it to my driveway. When I got there though, no one was home. I didn’t know what to do because I was having a hard time seeing and my arm was numb and I was scared. I tried to google it, but the words merged together into this gobbledygook, and I figured 911 was my only bet. I didn’t want to have my family come home to find me on our living room floor. I fumbled for my phone and struggled with the numbers. I tried to tell the lady what was happening to me but I didn’t have words. I couldn’t figure out how old I was or where I was, but somehow I got her my address, and I finally collapsed knowing help was on its way. Sadie, our black lab mixed rescued dog, came to nudge me and I realized there would be no way she was letting strangers in the door to work on me. I didn’t want them to hurt her, so I crawled to the back door, calling her, begging her to go outside. Once I secured her, I crawled back to the living room to wait. I will them to hurry so my family wouldn’t come home before or while the ambulance was there. I knew seeing me like this or in an ambulance would freak them out., and we almost made it. Just as we were pulling out of the driveway, they pulled up, so the EMTs were able to let my husband know what was going on, and I tried through to reassure my kids that Mom was just fine with an IVd hand despite my inability to open my eyes. At the ER, once they ruled out stroke, they treated it like a migraine with some IV Benadryl, Toradol, and Reglan and a couple of hours later, my symptoms subsided, and I went home.

Since we had parent teacher conferences the next day, I didn’t even think about staying home, and I just tried to beast my way through the year. I was always nauseous and I always had some kind of headache. Always. Drugs could reduce it, but nothing could make it go away. I pretended I was fine. I pretended it was normal to lose my words while teaching and to kinda check out for a bit every day during fifth hour. Because reading made me want to barf, I would read essays until I just couldn’t take it anymore, and go do something else, only to come back to the essays when my nausea was at a tolerable level. I was doing just fine.

They called the ambulance on me the morning I barely made it into the office from my car and my arm was numb and my words were slurred, but I assured my worried coworkers that I’d be okay. They really wanted to listen, but when I tried to write lesson plans for the sub and the words came out as incoherent drivel, so they just did, and I ended up back at the hospital.

One other morning, the spell came on during a staff meeting, and I convinced my colleagues to just to call my husband rather than an ambulance. They tried to talk me through it, but by this time, there was no more pretending that I was just okay. I looked into disability, but long term kicks in after 90 days! I barely had any sick days left, and there was no way we could handle three months without pay. So, I just kept running.

It wasn’t until a day in April when I came home nauseous, sat on the couch and told the boys I’d make dinner in just a minute, only to pretty much pass out that I realized how bad it was getting. I sat up and said, “Okay, what do you want for dinner?” but they looked at me confused. Dad had already made them dinner, cleaned it up, and they were getting ready for bed. I lost three hours! What?

The daily pass out when I came home from school became our thing, but I’d wake up with my brain reset ready to just keep running. One day, though, the headache I passed out with increased while I “slept,” and I stumbled to make it to the kitchen. I saw the look on my kids’ faces and I tried to pull it together, but I just couldn’t, so I laid my head on the floor and reassured them, I was just fine. Max, the 10 year old, wouldn’t leave my side, and told me that he loved me being his mom and didn’t want to lose me. Somehow, I still thought I could keep running.

It wasn’t until my 7 year old, who always loves school, told me that he hated school and just wanted to stay home (to take care of me), that I realized I was only thinking that I was running. It was obvious to everyone else that I was crawling.

In the beginning of May, I agreed to be hospitalized for 10 days, as long as the stay started after Mother’s Day so I didn’t ruin my boys’ plans they’d excitedly been sharing with me. There I received IV meds three times a day to combat the nausea and headaches. I got two facet blocks in three days and a fabulously successful occipital nerve block. The lumbar puncture to check the pressure in my brain left me with a pressure headache, but I could request pain meds whenever I wanted, and was handed cups full of pills to address all my symptoms. Five days in, I woke up without a headache for the first time in FIVE months, and ran crazily into the hall contact-less and practically blind to share my news with whichever blurry nurse was stationed there.She hugged me and I cried my way back into a headache, but it was a start. I was going to be all good. On my mark…

Based on my reaction to the meds, their observations of me, and their vast knowledge, the doctors decided that I suffer from reversible cerebral vasoconstriction syndrome which means random arteries in my brain will randomly constrict causing cognitive impairment until the artery decides to redilate. Thankfully, the damage isn’t permanent like it would be in a stroke, but the symptoms are very similar. The syndrome is temporary, and in 90% of the patients resolves itself in 3 months, so there still is a lot of work to do to understand the organic causes of my headaches.

On the day before the 10 days were up, my doctor came to talk to me about the post hospital plan. She said after two weeks, I could go back to work. What?! I only had enough sick days to cover the hospital stay. My students needed to write their last essay, and I needed to get them ready for exams, and I needed to get back to running. Get set….

But no, life outside the hospital was hard. I had different meds, different responsibilities, and different expectations. I wasn’t nauseated for the first time in months and my head aches seemed to be manageable, but I failed to return to school. I was crawling.

The truth of this hit me hard when I came to Eastern for the College Ready Writers workshop during the third week of June. I felt ready to jump back into my reading, thinking, writing life. But after trying to read just one article and discuss it that first morning, I felt the familiar twangs of nausea and pain crept up settling in the crown of my head. The whole afternoon I was a passive participant with a growing headache thinking, “No way! If I just take this slowly, it’ll go away, and I’ll be fine.” I tried to research the mini-units online, but even with my ugly purple glasses I couldn’t stomach reading online. On my second day back in the thinking world, the nausea and headaches persisted. I wasn’t giving up though. This is my life. Teaching, reading about teaching, writing, thinking; I made it to all three days of the professional development, but I wasn’t myself; I was barely crawling. No!

A couple weeks of taking it easy though, and I’d be ready for Summer Institute 2016. This is what I’d been waiting for. For two years, I’d been telling anyone who’d listen about the powerful community, the timely resources, the need to devote weeks of their summer to the Eastern Michigan Writing Project’s Summer Institute to feed their teacher souls. But this time, that Amy didn’t show up.

In 2014, I was a writing machine. I wrote all day here and always had something to share. I wasn’t here early, but I certainly didn’t miss the writing prompt every day. I read and outlined ALL of the assigned reading, and then went home invigorated and spent hours crafting my artifacts, reading and writing some more. This year, I barely get here in time for Sacred Writing. When I do, I whisper to my neighbor to get the writing prompt that I promise myself I’ll respond to later and try to find something to write about. I used to have ideas banging on my brain begging to be written, but now, all I have is the banging. I haven’t written a personal piece. I haven’t thought about a professional piece. Even though I cut a piece of paper that blocked all of the text but one line especially for my book blog book, so I wouldn’t get so nauseous from the sea of text on each page, but I only read 10 pages of it, so my reflection would be BS, and I don’t do that. My research piece would be further along if I didn’t keep hitting that wall: when I get to how I’ll gather data and such, the truth of the fact that I don’t know if I’ll be physically able to teach again to have students from whom to collect the data smacks me in the face, and I stop because that unknown is too big and scary for me to get reigns on. And once again, that’s not who I am, I mean was, and I hate it.

It’s strange. We don’t criticize babies for crawling because that’s all they are capable of, but for me, I feel like a failure. Like now, I sit here writing this piece instead of editing others’. It’s a rambling mess full of mixed and forced metaphors, instead of a cohesively written, cleverly phrased, voice-heavy piece I’m proud of. Maybe it’s because I’d say I’m at a 3 pushing a 4 right now on that headache scale, but I took my ridiculous pile of meds this morning: my two anti convulsants, my antidepressant, my anti nausea pill, my antihistamine, my calcium channel blocker, and my anti seizure drug. With all those anti’s in effect, there’s no reason for this headache to be this large or this writing to be this shitty except that I’ve really been trying to think, and to write, and to read, and to be me, but physically, I can’t.

I didn’t want to write about this. I didn’t want to whine about my headaches or moan about my nausea or make my new me the focus of this Summer Institute, but wise colleagues pointed out that this is the perfect place to explore this, plus the anthology piece is due today, and this is all I’ve written. In my head I’m screaming, “No!” though. I refuse to admit that my life has changed this much, but accepting my own limitations and learning to run at new pace is my new challenge.