Eight hours ago I willed myself to take a migraine med.

Two hours ago the sun set.

I sit here, the twinge still felt in my upper right cheekbone. I sat here all day. I guess, for part of the day, I tried laying here too.

I did this yesterday too, relieved I had nothing on my plate as yesterday’s pain was definitely of the “non-responding” variety, so why take a pill that costs hundreds of dollars?

For months I’ve twiddled my thumbs contemplating writing this idea out, what is it like every day with such bad pain all the time? Each time I considered who now may read it who hasn’t read it before, knowing the quiet answer is that no one who could stand to learn something, will, but everyone who already knows or lives in similar throes will.

And so, the question of what does it matter, to say the same thing over and over again, digs itself deeper into my brain. Perhaps, the answer is to simply get it out of my head.

Sunday I snuck to the grocery store between football games, grateful for this tiny town and no lines, not missing a moment of action. I almost didn’t go, but I knew the odds of feeling alright to make it to the store the next day after feeling okay then were next to none.

Monday, I lost.

Tuesday, half human but those groceries weren’t going to cook themselves and I had to eat something. So despite a bit of restlessness, every moment was spent waiting until I could cook dinner. I took off a few doorknobs, but even driving a few minutes to the thrift store to get an old pot to use for boiling off the paint, might just tip me over the edge and prevent me from making dinner.

Wednesday, I lost.

Today is Thursday, I lost again.

The pain probably is lower than it was when it suddenly ramped up as I sipped my morning (read: late morning) coffee. But 8 hours for a migraine medication to kick in is sure not what they sell us in the commercials.

But that is life, often every other day.

Losing more meds than not, losing most days.

At previous times when I’ve thought to sit here and write to you, I felt a more positive note juxtaposed to this one. This is not supposed to be sad.

I imagine myself actually getting real time with my doctors to discuss the actual reality. And what it might mean to look them in the eye and say that I am happy. That I have built myself a beautiful life. That I know it may be decades before more research is done on something knew and then who will I be if in 30 years from now, I am 58 and suddenly with less migraine? How do you walk into a world you’ve hoped for, having missed out on all of it?

You don’t. You eventually stop waiting for that.

You roll your eyes at people who suggest menopause will be this magic solution. Because you know the statistical insignificance.

And so there I am, in the doctor’s office. Asking to just be allowed to maintain the life I have because there is nothing to improve it and we all know it. Asking to not be penalized for not being a big ball of depression.

But they don’t see you really as sick when you look okay, speak okay, and have an otherwise happy life.

Are you giving up?

Have you stopped trying?

I want to hold these people in the grips of all the pain I’ve ever known and shake them as I scream “Don’t you think if I’ve been in this much pain for so long that the might of my own will wouldn’t have been as strong as possible to will myself into feeling better?”

Because if I’ve given up, if I’ve accepted this life then my doctor’s notes all make sense in their lack of surprise for being a non responder to various treatments. I didn’t want to get better. Obviously.

I obviously want this.

Maybe that wasn’t very positive, apologies, I promise life is good, pain is just never ending, and it is the holidays, of which, I fucking hate the holidays.

Back to the point.

I had such a nice garden this year, and as the summer wound down I really got to relish in the fruits of my labor. I ended up with a bunch of tomatoes, lots of peppers, one absolutely delicious ear of corn, and swiss chard – which was my most successful crop giving me ample greens all summer long.

My house has a beautiful, towering pecan tree.

I got to spend many mornings for many weeks, perusing the backyard for nuts.

This lasted much of October.

I’d traipse around, picking up a few handfuls, collecting a little in the cup of my hand. Every morning.

As a big wind storm blew through, my short walks around the yard turned into long quests that required a pad to kneel on and a bigger wicker basket.

I felt very bad most days, but often this was the only little adventure of the day. My time spent outside picking up pecans, quietly whispering to myself “nut” each time I grabbed one, often accompanied by my neighbors cat who has become known as the garden kitty, was the only reprieve from the otherwise agonizing days.

obligatory cat tax:

A little fresh air doesn’t fix your health, but it made me feel good.

I then spent weeks sifting through them again, removing ones with holes in the shell, took them to get cracked, and further sifted to separate the shell from the deliciously buttery nut within.

Not knowing what I was doing after the collection process though, meant that I ended up with 10 pounds of moldy unusable pecans.

I lost all my pecans, and it doesn’t even feel worthwhile to mention because they’re just nuts.

And a month or so of positive points in my life.

I lost all my nuts, and people keep asking me if I’ve made any new art or have taken on any new projects.

I wonder if they know how much shame those questions are full of.

With one day each week to manage to cook something nice, get the house in order, get laundry done, continue whatever home improvement project I’m embarking on. No one’s really listening when you tell them you’ve spent much of the last week, like all the preceding weeks before it for the last decade, rotting on your couch in agonizing pain. No, they are disappointed in you for not using your talents and creating something they can admire. Never buy, but admire.

Nevermind that I sit in my pretty pink house, with my pretty things, and my pretty plants that I fixed up all by myself. No that’s nothing to be proud of to have done in these fleeting few hours here and there between all the other shit.

But it’s mine. I am proud.

It is mine.

Last month, I lay here all day. One of the very few extremely severe days – the kind that used to send me to the hospital before I knew the hospital was no use – and I don’t recall the details. Early November, brain absolutely rushing with all of the exterior projects that had deadlines based on incoming temperatures and interior projects on hold because they were still winterizing projects but less immediately temperature dependent, and there I was losing a precious day of good weather.

In the time that I’ve lived here I’ve strived to not punish myself for the health that is simply a part of the deal, but this time was different and my thoughts were mean.

I had a late dinner as I watched a tree stump erupt in flames in my neighbors yard, just beyond the edge of my fence. I meandered out, mostly thinking how nice it would be to be in close proximity to my hose with running water.

And a terrible day turned into a nice conversation, turned into a much longer evening with more neighbors sitting out back as the night turned quite cold. All of the hours of agony, all of the mean voices in my head, wafted away in just a few short hours in good company.

I went home, frozen down to my bones, to my pretty pink house in my pretty little home.

This is mine.

My friend remarked the other day, how don’t I ever think about how I found this great town multiple states away while looking for houses? And I do, all the time.

And so, I don’t have the right words to put together some thoughtful essay on what it’s like living with such a severe iteration of migraine disease and being a homeowner and starting life over in a town I’d never even been to before.

I don’t have the words to tell the people I meet the nuances of what happens in between each trip to the hardware store, despite the curiosity in folks eyes.

But I do have these little moments, and maybe in this awkwardly strung together tale you’ll understand that there is joy here.

In my pretty pink house.

And there are pecans, because my neighbor brought some of his over to share.

And I think that’s real nice.

A.