It’s almost 1 pm and I’m still in bed. I’ve eaten breakfast, drank coffee, taken all my medicine–but still everything feels so weak, heavy, and drained when I stand. The idea of going anywhere except the nearby living room couch feels daunting. But alas! These are how crash days go, and for whatever reason, the last 2 months have been a constant see-saw between crash-recover-die-come back to life—you know, the norm.

Monty is laying on the cool tile floor, waiting. He’s half-asleep right under the middle of the door frame, his front half in my room, his back half in the hallway. So whenever I get going, he won’t miss the opportunity to try and get me outside. He’s pretty convincing, even on crash days. How can I resist this face?

What’s been toughest is managing this head/facial pain, which I’ve had for years but has really intensified over the last two. It either keeps me from falling asleep, or wakes me up at 3 AM, but mostly it just makes just trying to navigate through an ordinary day stupidly hard. It’s more than a distraction. Pain, even “small pain” (think tooth ache) turns consuming, completely exhaustive when it’s chronic, no matter what level of intensity it is. Just trying to elude and quell this pain that’s constantly knocking from within my brain makes what should be easy feel insurmountable. You’re always learning how to live around it, through it, under it. It’s a silent fight between you and this invisible pain, but damn can it be crushing.

That is how it feels by the way; that my brain is swollen and pushing against or “knocking at” my facial skull. This is how I explain it to doctors, to which they say “hmmmm…intersting..” And then they do some thinking and examining. But they’re ultimately stumped and it’s understandable why. The MRI’s show tiny abnormalities but none that would explain the kind of pain I’m having or why it’s worsened.

I often wake to a text from Matt asking how I am today, and I tend to refer to my body as a limp noodle and describe my head as volcanically explosive and oozing. And then very recently, this emoji came out!

The world is a funny place. Now I don’t have to use words at all! I’m just going to turn these emojis into my doctor instead of the 1-10 “pain scale.”

Anyway, it’s hard not having answers. It’s hard not to look in the mirror and ask “Am I crazy? Am I imagining this?” Humans like a little thing called proof, and it can be discouraging trying to convey pain to doctors when I can’t hand them a test that says “See? I tested + for Volcanic Brain Syndrome w/ Idiopathic Oozing.” We like to see a cause so we reconcile the effect, even if we can’t cure it. But there are just so many unanswered questions with this illness. You have to learn how to trust your pain, and by that I do not mean indulge it, but trust that you know your body, you know what pain feels like, and whether a test comes back positive or negative doesn’t determine your physical reality.

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Last Monday, the pain had been extremely intense all day. I had a doctor’s appointment with an ENT that afternoon, and as much as I wanted to call in sick, my mom helped me get ready and drove me to the fancy doctors office. The clinic did botox and other procedures, but mostly for aesthetic reasons, so you bet your booty it was extremely well decorated. Anyway, I was super nauseous the whole time, wanted to stick my head in a bowl of ice, and just lay down with the covers over my face as we sat in the waiting room. My head stormed inside. I was dizzy and heavy and short of breath. The doc checked my sinuses–all clear–but scheduled a CT scan to get a better “picture.” I’m highly doubtful there will be any findings, but like my mom says, at least it will be just one more thing we can rule out–cross off the list. The 347 item long list.

As we drove home, everything worsened. It was early evening and the sun pierced my head through the windshield. I felt on the verge of ralphing, but was also strangely  hungry at the same time, craving salt. I ate a little on the drive, and by the time we pulled in the driveway my mom asked “Should you just come to our house?” I groaned “Yeah, I guess.” I collapsed on the couch in the office with ice packs on my head and doused my face in peppermint oil. I took the last dose of pain meds I was allotted for the day, and just prayed in the quiet that any of it would work, would be enough. Tears streamed down my face, but I really wasn’t sad. Maybe overwhelmed, I don’t know. But I took deep breaths and Monty laid right next to me on the floor, like always. One of my arms dangled off the couch, intermittently petting his velvety ears. It always calms me down.

Roughly two hours later the pain had lessened, the nausea lightened, and I moved like a sloth to the living room couch to watch The Voice with my parents. Because THAT’S living the 34-year-old’s dream people! It’s an addictive show, I have to say. Then we watched Better Call Saul, and in the middle of it everything seemed to slowly start to erupt again, the damn volcano emoji!  The nausea was up to my throat, but I couldn’t throw up. My head and face felt like a thick, wide rubber band was wrapped around it five times, and all my hair was being pulled from the top. By this time it was 10:30. “Do you need to sleep here?” Marc asked. And just the thought of walking home made everything hurt more. “Yeah, maybe so,” I muttered. “Maybe we should get you in the bath?” My mom suggested. The idea exhausted me, but the symptoms were just too much, tired as I was, I knew I wouldn’t be able to sleep in that condition.

My mom drew me a bath. I got in her big tub, and she brought ice for my neck and head, and coffee, the old-fashioned migraine remedy. Monty laid right next to me on the other side of tub. Every once in a while he’d stand up and stick his head over the edge, lick my hand and even sip the bath water, which is probably pretty gross but it made me laugh anyway. I waited for the warm water to calm things down, and Monty waited with me. My mom would yell out from her bed every ten minutes. “Mare?” “Yeah.” “Just checking.” “Still here”

After an hour, the hot water seemed to make serene all the internal chaos. I was sweating in the bath and I just prayed that somehow I was detoxing– that whatever poison in me causing such a volatile reaction was exiting the building. I prayed each bead of sweat was a tiny drop of pain leaving me. Maybe it was a mixture of all of it, but it seemed to work well enough.

My mom brought me pajamas to borrow and I crawled into her bed. I couldn’t help feeling like I was five years old again. I remembered if I’d wake up sick in the night, I’d crawl into my parents bed, or even sleep on their floor. Now here I was at 34, the behavior hardly unchanged. Would it always be that way? Probably. We brought Monty’s bed in her room, so he squeezed between the armoire and the bed, every once in a while walking over to my side and just sitting there next to me, quietly panting. I’d pet him a little while and then he’d go lay back down. Poor dog, never knows where bed will be.

I was tired but couldn’t sleep yet, so a PBS documentary on Harper Lee played quietly on the TV in the background. “Just wake me up if you need something,” my mom said softly. I patted her shoulder, “Mom, thank you.” I just kept thinking how ridiculous it was to be the age I am and still need my mom so much, but more than that, how could I feel anything but extreme gratitude to have a mom capable of seeing me through so many dark days and nights. Particularly that one. Though it was far from the first one in the last few years, hopefully we’re growing closer to “the last” of nights like these. I thought about how much fighting we had to do, how much longer would we have to wait, but mostly how tired I was and maybe think about advocacy efforts at some other better time. What can we do in the meantime but love each other fiercely and just be grateful we’ve got anyone to hold our hand through it.

I am lucky, but I’m also painfully aware that all of this takes a toll–not just on me, but on my mom, on Marc, even on Monty! My mom was crashed for a few days after Monday, as was I. Despite my stepdad being unexpectedly hospitalized for four days not even a month ago with heart trouble and requiring a stent be put in, it seems like he’s the healthiest guy on the farm. Life is ridiculous.

I laid in my moms bed and said prayers of gratitude for the help I had. For the relief. Prayed that the cost of what happened wouldn’t be too much on anyone, though of course we paid our prices. Sometimes I guess, it’s just unavoidable.

The soft-spoken, gentile southern voices describing Harper Lee and her first novel which would change the literary world, To Kill A Mockingbird slowly put me to sleep. The ice packs rustled every time I changed position. Besides the discovery of her second manual in 2014– Go Set A Watchmen– no one could figure out why Harper Lee had stopped writing after creating such an important work as Mockingbird. I thought how hard that must have been, to feel you’ve reached the top on your first try, how maybe she felt she had nowhere to go from there. The power of self-doubt scared me. It had been such a long, persistent struggle, that day and night–these last few months. I prayed to Harper Lee. Give me the strength to grow bigger than the pain.

Maybe somewhere in the cosmos, ol Miss Lee heard my humble prayer. My mom let out a little snore, and I was relieved to hear her finally asleep.

I saw this photo on the TV just before turning it off, and something about it made me feel stronger after the day would finally end. I guess they call that losing the battle, winning the war.

Health, Happiness, Keeping On