Open Letter to Myself
Listen, you stubborn little poop. Are you listening? Because you tend not to pay attention when someone’s telling you something you don’t want to hear.
Here’s how it is!
1) After this past Saturday’s incident, I forbid you to go to Eastern Market by yourself. I know you used to enjoy going solo back in the day but ask someone to go with you next time.
2) No drinking alcohol for at least a year. Period. Finding out you risk having a seizure by having a little too much booze means no need to drink “just to be social”. Neither you nor your friends want to be inconvenienced by you suddenly falling over and foaming at the mouth. Not that it’s likely to happen, but do you really want to risk it? I mean, really. How rude.
3) No situations where it’s loud and crowded if you’re not rested and up for it. It’s no fun for your brain to struggle when you’re trying to conversate, so stay home or decline invitations to go out if you’re not ready to socialize.
4) Some days you’ll just want to be alone and not talk, or not talk too much. Don’t be ashamed of those days. Everyone will understand. But also don’t let these quiet periods go on too long – make yourself talk to people after an acceptable amount of time passes so you don’t lose the art of meaningful chit-chat.
Alas, it is time to face my deficits. “Deficits” is a word used in my group therapy, a kinder way of expressing disabilities or shortcomings. I looked it up and it generally means you don’t have enough of something, like money. Or brain power to deal with certain situations, like going to one of the largest open markets in the country. How excited I had been that morning to return to the excitement of Eastern Market! Moments after completing my mission of acquiring duck eggs, I scanned the the high ceilings of the shed and the hordes of people that had started to arrive. The tiniest seed of fear soon blossomed into full panic, and I quickly retreated to my car and got the hell out of there. Driving back, I mourned over this small act of independence that was now lost to me. No big deal – just another thing to accept as I journey through this thing called life. I told myself to not be a big baby about it, and that things could always be worse.
So I had a girlfriend at work come up to me at lunch the other day, and she asked me how I was doing with my recovery. I decided to answer truthfully, and not just a vague “Pretty good” which has been my usual response since my surgery. I took a risk and opened up.
I admitted that I’d been having problems the past few days with speaking and whatnot – I had actually been considering pursuing transcendental meditation, as another co-worker had taken some courses with positive results. We discussed the age old problem of quieting the mind, and somehow we ended up on the subject of my tumor size, which had been compared to a baseball. I thought, well, what’s that all about? It had never occurred to me to use a baseball and actually feel the size of the tumor in my hand, so I sent an inquiry out via Hipchat asking if we happened to have a baseball around the space. Eventually someone offered their baseball shaped paperweight on their desk.
Close enough, I decided. I brought it to the bathroom, accompanied by my aforementioned friend. First I marveled at how big it was in my tiny palm. Then I held it up to my head in the mirror.
Perhaps I avoided doing this before because instinctively I knew what my emotional reaction would be. Seeing this thing next to my head, this baseball shaped object that represented the intruder that had been residing in my brain – well, it was shocking. We both had a “Holy shit!” moment and I actually started to get goosebumps and grow ever so slightly nauseous. I put the ball down on the bathroom counter, only to hold it up again to assure myself the first time was real.
Perhaps you’ll call me a masochist, but I don’t regret doing this. It forced me to finally accept the seriousness of my surgery, despite how well it had gone for me. It made me feel, for the first time since this ordeal, everyone’s fear and distress. They did not have the luxury of my drugs and so weren’t shielded from any emotional distress by a perpetual low-key euphoric state. And how the hell could something this size stay quiet for so long?
Meningiomas, in case you haven’t looked it up on the internet by now, are extremely slow-growing if they decide to be benign. They grow maybe 5 mm in a year, so it’s likely I’ve had this monstrosity in my head for most of my life. Year after year it grew, a silent, savage threat to the otherwise healthy environment of my brain.
I mean, it was big. Breathtakingly sizeable. Unquestionably large. Not grapefruit sized like other tumors in medical history, but it was pretty huge. I thought it was alarmingly not small in the MRI scan, but up close and personal – yipe! No wonder it was pressing on all those areas of my brain. My friend remarked that she couldn’t even put her fingers around it, and I imagined my surgeon seeing it for the first time and wondered how that had gone for her. She had told me she had to use scissors due to how firm it was (harder than a racquet ball, she had told me later). After reading Henry Marsh’s book and finding out the main tool used by neurosurgeons was a fine sucker, I imagined her finding it useless, flinging it away and yelling “Hedge trimmer! Stat!” and someone swiftly handing her the requested garden implement – just the thing to remove a stubborn meningioma!
I ponder all of this as I rest in bed on a Friday afternoon. Octavia, my ragdoll cat, snoozes next to me. Occasionally I stroke her abundant soft fur, and am rewarded with soft motor sounds. Today’s company outing at the Detroit Zoo was quite exhausting, what with all the chaos and noise around me for almost 4 hours. But this was one of the events I couldn’t avoid since I was the organizer. And I do enjoy being the engineer behind a good time, although it has been getting harder for me to not be overwhelmed. (Mental note: Swallow your silly pride and ask for help next time. People will be there for you. You need only to ask.)
My husband had tried his best to keep me relaxed the rest of the day, but it was difficult as I kept scanning the crowds for co-workers and late comers, and kept receiving texts from various sources. The whole day had been very taxing so far, meddling with my speech, according to him. “Too much hesitating and searching for words,” he had observed. “You should lie down after this,” he suggested,”and don’t do anything else for the rest of the day.” I agreed.
The sound of a thousand crystal chandeliers tinkle in my head as I lie here. The same noise that’s been plaguing me these past few nights, keeping me from sleeping. My doctor had told me it was my brain processing all the information from the day. It’s not super loud, but combined with the insect orchestra outside my bedroom window, it’s occasionally maddening enough to clutch at my head and go into a fetal position in a futile attempt to block the noise.
Eventually I deal with it, like everything else. ‘Cuz that’s life, you know? You just deal with it.
I woke up shortly after I dozed off to find my mother and my twin brother walking in. I didn’t have my glasses on, but I knew they were studying me for a moment before both of them agreed that I “looked good.” My nephew and my niece-in-law said the same thing when they visited later. I think they had expected some kind of horrible disfigurement – maybe black eyes, perhaps some swelling. But I actually felt fine, except for the enormous swaddling of bandages around my head. And my hair.
My hair! What the ….?? I put my hand up to my head. It was stiff with some kind of dried goop. It felt like it could hold the hairstyle of the lead singer from The Flock of Seagull’s, and I was afraid for a moment that it was dried blood. But it didn’t have that metallic scent to it, so they must have put some kind of gel in my hair to hold it away from the surgery area. Good thing I had showered the night before, with my husband’s assistance. Nothing like a good clean before a good dirty.
My husband arrived finally, expressing again his surprise that I had called him that morning. Needless to say, he was happy to see me awake and alive, and talking. He had brought my glasses, which I was grateful to have again but unfortunately they wouldn’t go on my head due to the bandages. I spent the rest of the morning either holding them up to my face or assuming the blurry figures around me were either family or hospital staff. I did put them up to my eyes as a speech therapist entered, to see what she looked like.
“Good morning!” she said cheerfully. “I understand you’ve been having some speech problems?”
“Heh, yeah. Just a little.” We laughed at the obvious joke. I was eager to start getting help with my speaking.
“Well, your doctor wants to see where you are today with it, so let’s get started with some basics.”
She asked what things I would find in the produce area of a market, and after a brief moment I listed the first things that came to mind. (Apples. Oranges.) Then eventually I found myself imagining I was standing in the first aisle of a nearby market from my house, and naming fruits and vegetables off from memory.
After some basic memory tests and super easy math problems, she said I had done very well, and confirmed what my doctor had told me – that I would be visited by another speech therapist the next day as well as a physical therapist who would check my motor skills to see if I was ready to go home. She left, and then a few minutes later my doctor returned to talk to me and my husband.
She repeated everything she had told me earlier that morning, which I was glad of because my memory of that morning was getting a little hazy by then. The tumor sample had gone on to pathology as promised, but there would be no results for several days. She assured us again it wasn’t cancerous, and the pathology results would eventually prove it to be so. And, they were already getting a room ready for me back in 8 South so I was definitely not staying in ICU much longer. Hooray!
Nothing further worth noting happened in ICU that I can recall, other than me being pleased with myself for coming out relatively unscathed. Sometime in the afternoon I was transported back to the neurology ward where I was glad to get my old room back, but with a new roommate. A vase of flowers from my work had just arrived, as well as a lovely summer bouquet from our neighbors.
I settled into my bed, and I think it was at this point that I started channeling my deceased father’s mannerisms. I held my left hand just so, moving my fingers about as I searched for the right word. My twin noticed right away.
“Hey, that’s what Pa used to do!” I told my mother I felt my father’s presence in the room.
“Pa’s here, you know,” I said. I meant it, too. I felt it. Maybe that scared her, or maybe it comforted her – I wasn’t sure how to read the serious look on her face. I merely wanted to let her know that my father was there, had entered my body somehow and was moving me like a puppet master.
Then the meds took hold of me again. I passed out and fell into the sweetest of slumbers.