I don’t blog because I don’t have a blog. I never know what to put in a blog. It’s funny, really. Writing is like breathing to me, and yet, blogging is this foreign beast that I just don’t know how to handle…but lately, I’ve had a lot building up on my chest. A lot that I just don’t know how to handle. A lot that, if I don’t get it out, could crush me.
I have friends and family I can talk to, though no one truly understands how I’m feeling and that’s not their fault. Maybe it’s my fault. How do you explain the sensation of your skull filling up with fluid? How do you explain the frustration of having to practice a sentence five or six times in your head to make sure you get it right only to have your brain fail you when you go to speak it out loud and you end up stuttering or having to restart it at least twice before it all comes out?
My brain is broken and I can’t fix it. My thoughts are muddled half the time and the only time I can put them in order is when my fingers are on a keyboard. I can’t focus on a conversation and lose whole parts of sentences that are being said to me even when I’m staring right at the person talking to me. I don’t know where the lost information goes. I am not distracted when I’m being spoken to. I am focusing solely on the person I’m speaking to. I am wholly in that moment and yet chunks just disappear.
My life: every moment, every conversation, every sensation, every interaction with the world around me, they are all grains of sand and I’m holding them in my hands, trying to hold them close and not lose them and they’re slipping through my fingers no matter what I do. I scrabble to scoop them back up, to hold them more gently, and to move more slowly so they’re not knocked loose, to take the time to savor them, and yet I still lose them. Every night I lay in bed and I think about the day I had with my family with this nagging feeling in my stomach telling me I’m forgetting something. I’m forgetting something. I don’t know what I’m forgetting, but it’s slipping past my fingers.
Another grain of sand gone. Another memory lost.
Another misspelled word that I used to be able to spell without thinking. Another word I had to look up that I used to know without the help of a dictionary.
And yet I cling to a date.
February 18th 2015. A month and a day after my 9th wedding anniversary. I sat in a neurologist’s office, staring at the ornate swords collecting dust on top of his book shelves- book shelves filled with texts and journals, studies and research articles- and I thought about how much Mat would love those swords. Something was wrong with the front end on my car so my mother in law had dropped everything to bring me to the neurologist. I needed to say thank you again for that.
I tried to read Mary Shelley’s Frankenstein as I waited for the neurologist to come in. I tried not to focus on what he was going to tell me. I was pretty sure I already knew what was wrong- the neuro-ophthalmologist had been fairly certain of the diagnosis when he referred me to the neurologist.
I made it two pages into Frankenstein and I lost focus. I’d read two pages and couldn’t tell you the faintest thing about what I’d read. I closed the e-book and pulled out my phone. I scrolled through Facebook looking at the smattering of late Valentine’s Day posts. I’d started Weight Watchers on Valentine’s Day and gotten a small fake rose from the cashier at Dunkin’ Donuts that morning. When Facebook couldn’t hold my attention, I went to texting my best friend, but she was at work, so responses were going to be sporadic. I texted mat as well. He was playing a video game and then had to get Connor off the bus. I was bored, I was scared, I was trying to be brave. I wanted to go home. My head hurt.
Finally, the neurologist came in. He asked me a thousand questions and then handed me a piece of paper to read and I was supposed to tell him if I had any of the symptoms on the list. I skimmed the first ten- I had them all. After that the words blurred and I couldn’t read them. My eyes kept skipping off the page and it made my head hurt more. My brain was aching. I didn’t know your brain could ache. I didn’t know that you could feel the different parts of your brain throb if the pain was bad enough. You can.
I hopped up on the exam table and made some sarcastic comments- hiding my fear and my pain behind humor because my hands were trembling and my chin was quivering.
“C’mon, Amanda, you’re a grown woman. You can handle a doctor’s appointment. He’s going to tell you that the neuro-opthalmologist was wrong, you just have a migraine, and you need to take your imitrex more often. You’re fine,” I said to myself. I berated myself for letting anxiety and fear make a home in my chest.
“Its just a migraine…” I chanted it to myself as he listened to my heart and he had me squeeze his fingers. “It’s just a migraine.” I repeated it like it was a mantra as he checked my reflexes and shone an insanely bright light straight into my eyes. “Here it comes. He’s going to tell me it’s just a migraine,” I told myself again as he set the light down and took a seat next to the exam table.
“You have pseudotumor. Another name is idiopathic intracranial hypertension. It all means that you have spinal fluid going into your brain- we all do actually- but for you, it doesn’t leave and so the pressure builds up and it causes all of the symptoms you’re feeling.” He said it like he was telling me I had a cold.
“So, what do I have to take? How long does it last? When should the headaches go away?”
“We have to do another CT scan because they didn’t do one of the back of your brain. I am going to start you on medication today. It doesn’t go away. If the medicine doesn’t work then we have to put a shunt into your brain, which means I have to drill into your head and put a tube from your brain to drain the fluid into your stomach. The pills should make the headaches manageable…so will weight loss.”
It doesn’t go away. Those four words have echoed in my head for four months and sixteen days now.
The medicine should make the headaches manageable.
When you ask me how I am, assume I have a headache. If I am mentioning that it hurts, I’ve reached the point where I can feel every region of my brain and they’re all throbbing to a different beat.
When we’re having a conversation and I suddenly stutter or seem like I’m starting a sentence over and over, be patient with me. My brain is broken and I don’t know how to fix it.
If I seem disinterested, I’m not.
If I seem impatient with you, I’m sorry. I’m impatient with me…never you.
THIS ISN’T WHO I WAS A YEAR AGO. This isn’t who I want to be now. But this is who I am. And it hurts. It hurts to my very soul. It’s a knot that sits like a lead ball in my gut. I can’t explain how I feel. It’s like trying to explain the color orange to someone who’s been blind their entire life. For all that I can do, I cannot, for the life of me, find the words in my ever dwindling- but once extensive- vocabulary to explain the soul searing pain that I feel every morning.
I live my life by a timer. Every six hours I must take my medication… There is no spontaneity allowed for me any longer.
There is no easy happy ending to be found here. I’m sorry if you read all of this hoping to find happiness waiting at the bottom. That’s not the case right now. Sometimes, it’s not about being happy with your situation, though. Sometimes it’s about realizing that this is the hand you were dealt and while you can throw a few cards back and maybe you’ll even be luckily to be given new cards to play, at the end of the day, all we can do is play the hand we have. There’s no folding allowed in this game.
The pseudotumor shortened my lifespan but I’ve decided if Death wants me she’s going to have to lace up her running shoes and chase my ass down. I will not go to the grave silently nor will I go easily. I’m still here. I’m still playing this hand, dammit!
This is not who I want to be. But this *is* who I am.
Please stop Complimenting my kids’ “Good” Behavior goo.gl/fb/rwfojS
Hard pass from me pic.twitter.com/VayvW1eopK
I've gotten to the point where I'd let my kids summon a demon with a Ouija board before I'd let them play Monopoly together again.
Parenthood is when you start counting the minutes to bed time before 11am.
ALL the Movies Revealed at Disney’s D23 Expo! goo.gl/fb/Bdr8vT