Yesterday was an awful day for me, brain wise.
I forgot things & I’m probably being written up at one of my jobs because of a major mess up. It just was not a good day at all.
You know, normally that’s fine. But it isn’t okay when the people around you have no working knowledge of what’s going on & you’re too upset to explain to them that really, this is not your fault. That when your head hurts so badly you’re barely functioning, it’s difficult to remember to look for things that should be there but aren’t.
When I came home & told M what happened, he tried to comfort me. He tried to say that he understands how frustrating it is to not be able to voice what’s wrong, but when I pointed out that actually he has no idea, he agreed.
He has no idea what it’s like to know something is wrong, but not be able to verbalize it. He has no idea the tears this causes, or the frustration with both everyone around me and myself. There are times I want to scream about how this is not my fault, but I can’t. All I wanted to do was sleep & I couldn’t. I was up for a couple of extra hours, pouring over the details of the evening, trying to figure out some way I can point to things not being right when someone asks me about them.
I can’t think of anything. Because those people don’t know me well enough to see when I’m having an off day. My family & the majority of my friends, yes. 95% of my coworkers? Not so much.
I hate Moyamoya.
Today is World Moyamoya Day.
The first one was last year & I think I discovered the Facebook page for it about five days too late to celebrate.
Not this year.
But the thing is, it’s prompted me to read a lot of my old posts & it’s dredged up a lot of feelings. Even in the weeks leading up to today, I’ve been melancholy. There is a plethora of other things going on that I’m working through, but this year . . . the Moyamoya thing is hitting a lot harder than I thought it would.
I’d say it shouldn’t be, but then I remember the headache I had recently that scared me so badly I actually discussed with M which emergency room to go to if it didn’t let up. My dad came by my house that day because he knows I’m stubborn & even though he told me to call him so he could take me if I wanted to go, I probably wasn’t going to go. [Spoiler alert, I didn’t end up going & am further convinced it was just all a result of having allergies/a headcold/strep for the majority of April. Which would have been made better, faster, if I were allowed to take decongestants. Ahem.]
So yeah. I know I’m a survivor. But I hate living in fear of every wrong twinge in my head, every morning it’s a little tough to get out of bed [because what if it’s not just me being lazy, what if I’m having another stroke?], every missed interaction with my kids because Mommy’s head hurts. I hate having this disease, but there is no way I’m going to let it win. It’s never going to get the best of me. It’s not going to prevent me from buying stuff for the kids’ Easter baskets the day before the bunny is supposed to arrive. What it is going to do is teach me a about a million* ways to handle headaches without taking drugs. [*gross over exaggeration] Eat/drink water/rest/ice packs/don’t read even if you think it’s a good idea because you’re resting!
I just wish more people knew about Moyamoya. I wish more people knew about the anguish it causes, even years later. I don’t wish people knew the fear of their children having it [oh, God, please don’t let my children have it]. I hope my children know that I absolutely did this for them, that no fear I had about surgery or side effects was bigger than the fear of not being here to see them grow up. I hope this is more than a passing mention on Grey’s Anatomy one day. I am determined to educate people about this. It doesn’t have to be a silent disease. It can be a loud & in your face disease [except when we have headaches & then can it pretty please be a quiet disease? Just for a few minutes until we have our bearings about us again]. I can’t wait until there are foundations & charities for Moyamoya. I’m looking forward to the day when people don’t say, “Bless you!” to me after I tell them why, before age 30, I had two brain surgeries.
Most of all? I want awareness. Because we can’t fight something we know nothing about.
I remember feeling pain. I remember wanting to cut my head off at the neck. I remember terror at the thought of leaving my husband & children alone. I remember a nasty black eye for a few days.
I remember telling a nurse to tell M I wanted my Chapstick.
And I remember feeling love.
I am so lucky to have an amazing support system around me.
Two years ago yesterday, I had my first Moyamoya surgery. I hope that the second one I had in January of 2012 is the last one I will ever need.