Today is officially the worst day ever. You were thinking the same thing?! I know, right? It’s the first Monday after the manipulative time gods in the government decided to jack up my already f-ed sleep schedule for whatever reason. And yes, I feel personally targeted and yes, I am personally annoyed.

No, you’re being dramatic.

I, woman who has had my skull hacked open five times, have great perspective on the worst day ever, because I’ve lived it, and I have decided to firmly put today in that category because a) I can, b) I am so sleepy.

You see, there are a variety of calamities that befall you when you’ve had your body go through what mine has. I used to call them “brain tumor moments,” but now that I am not entirely sure what is growing in my head and how fast and how gross it is, I feel like they are just tiny calamities. They all pile up and by the end of the day I am an exhausted heap of a human being who has lived her whole life like Dick Van Dyke in the intro to his old TV show: All physical comedy, all the time.

For example:

I stretch too hard in the morning. Yea, you heard me right, that weird turtle coming out of his shell move we do in the morning renders me in writhing pain. Even the dog wonders why suddenly pillows and blankets are flying off the bed as I try to scrape fat and bone cement out of my ear. Then I wake up long enough to realize, “ut-oh! It’s just your head,” and I cool my jets.

I stand up too fast after eating, the head rush that befalls most people causes me to fly back into my chair, usually missing. Whoops! The first calamity of the day is usually met with a happy little “oopsy poopsy!” As though I am trying to make a tiny baby feel better about falling on their rear end. It hurts usually but I smile and laugh and talk about how maybe the fall will break down my cellulite upon landing. Seriously, is that a thing??

I go to put the dog on his leash, the forward motion causes a tiny amount of CSF to leak out. It drips into the dog’s eye. He looks at me in discomfort. “You’re welcome,” I say, ” it’s dry in Colorado, you can use the moisture.” By this point (usually about 9 am) I have lost the cutesy tootsy thing and it’s all blunt and straightforward, like an awkward comedian delivering a dry punch line. I wait for the laugh track. Dusty (the dog) looks at me like I am a total dick. “Takes one to know one,” I think to myself.

I go to drink the disgusting combination of healthy crap I force down my gullet and get dizzy mid-chug and spit it all out into the sink. The coughing and gagging causes my neck to seize up and my intercranial pressure to increase. I sit on the ground and scooch my way to the freezer for an ice pack. I sit on the ground waiting for the ice to numb my pain while Dusty smells my scar. I’ve gone from dry punch line lady to gigantic raging bitch, or alternately sometimes I opt for cry baby.

That’s usually just the morning. Then it happens all day, tiny calamity after tiny calamity that usually sends me into delirium by 3 pm. I do my best and I laugh it off and so it is fine, super awkward, but totally fine. 

That awkwardness? It’s my invisible marker of ability lost. It’s my battle cry no one hears, because health is a solitary battle. Last night while perusing Facebook, I saw an article about Invisible Disability, it began to touch on notions of coming out as disabled or passing as abled. It struck me because I don’t have to come out as anything and I don’t have to pass as anything (I’ve got a lot of great material on this from feminist disability studies and crip theory if you’re so inclined), because while I don’t fit the map of ability we all are told we need to navigate, I am uniquely me, and I don’t feel that at this point that needs to be changed or fixed, though in naming the invisible parts of myself, the reasons behind those silly calamities, I gain a great amount of power.

But then, alas, someone conspires to take the time it should be and make it into a time it isn’t yet by deciding a good chunk of the country needs to be in an arbitrary time machine and I wake up tired, and a little perturbed and not quite ready to face all the calamities that will befall me. So, while most days my morning calamities start with “whoopsy daisies” and “aw shuckses,” today I fully expect a lot of f-bombs.

I’ll probably be happier about it when it’s not dark at 3 pm and I can actually stay awake past 4.

Peace and love and day dreams of naps,

Samira