So here is one thing I’ve learned: When you’ve gone through something traumatic like brain surgery, people don’t know how to react. It messes with their sense of what’s normal, which once included you as a healthy human being untouched by the Horrible Things That Happen to Other People. Who really expects to wake up one morning and find out their friend or colleague has a baseball sized tumor in their head? And apparently I had also reminded everyone of their mortality, as a friend had so kindly explained to me. Oops.
This explained the varying reactions I got from friends and co-workers. People I barely knew visited, and people I thought I knew pretty well did not. I got hugs from people who normally didn’t hug, and smooches on the cheek from those I had only known in certain music circles. What can I say – people were glad to see me alive. But not a peep or visit from those that I thought would be there for me.
Perhaps they didn’t know how to react once they saw the new me with my mangled head and mild aphasia, or if they should react, what’s the appropriate opening comment? Was it insensitive to say “Wow, it’s like nothing happened!” Or any number of worrisome things that can just paralyze someone from acting at all. I know these things now and I admit to being guilty in the past of such inaction. It’s human nature to be uncomfortable around trauma, and to decide that it might be better to not say anything than to commit some kind of grotesque faux pas.
On a positive note, smelling and tasting finally normalized by degrees. One morning I was delighted to find that I could smell coffee, shortly followed by regaining my ability to taste all things sour.
At this point of my hermit existence, I became obsessed with tidiness and order. I wiled away the hours organizing and tossing all manner of old and unused items, and cleaning the nastiness of months of neglect. Old medications and hotel room shampoos from the linen closet, stained and battered plasticware from the kitchen and wiping away the thick dust covering my vanity filled my days. Oh, it was satisfying. And it gave my life meaning and purpose, something I hungered for while away from work and people.
As scheduled, I visited the speech therapist in the hospital affiliated medical center not too far from me. This was where all the rehab was for brain trauma, strokes and general physical therapy. I really hadn’t been out in public places yet so I still had to hang on to things like railings or my husband’s arm when I walked. The place was one long, wide hallway with different departments on each side, casual seating down the middle and physical therapy patients making their way slowly around the perimeter. Everyone was moving. The lights were harsh and the cacophonous murmur of conversation, while not very loud, added to my overstimulated experience. I was a wreck but I pushed on and we slowly made it to the speech pathology office. I checked in then collapsed into a cushioned chair to wait.
Soon after, a pleasant young woman came out and introduced herself as Melissa, my speech therapist, and she escorted us to her office. It was a smallish room with basic furnishings: a desk with two chairs in front of the door, and a chair in the right corner where my husband went to sit. I sat with Melissa at her desk.
“Well, we’ve been through a little something, haven’t we?” she began. We all laughed awkwardly.
“So I’m here to evaluate your speech and cognitive skills,”she continued. “I’ll give you a few tests to figure out where you are now and if you need any further help. Did you have any concerns or questions before we get started?”
The only thing I wondered about was my smelling and tasting issues. She said it’s likely that my olfactory area on my left side was bruised or stretched during the surgery, and anytime that happens the injured area needs time to recover. I hadn’t been prepared for her matter-of-fact way of answering – I was expecting a little more concern in her tone but I assumed she’d had to deal with worse. Well, that was it for my questions. I mentally put my big girl pants on for whatever was to follow.
She put me through some memory tests first, first telling me a story and asking me questions after – your usual comprehension and information retention scenario. I did pretty well, though she did have to repeat the story twice and a few questions I couldn’t answer without prompts. Then on to basic math, which made me and my husband laugh because I had always been unable to do simple addition or subtraction quickly before any of this had happened. But all in all, I didn’t do too badly. She asked if I wanted to come back for therapy or work with some online stuff she would recommend. I decided to opt out of therapy, as my husband would have had to take me there once a week and it was high time he got back to his life. So she recommended Lumosity and an app called Elevate to help me improve my speech and cognitive skills.
Before we left, I asked if she had any information on the brain and what areas controlled certain functions, as I had become curious about such matters. “Yes, I think I have just the thing you’re looking for. ” She stepped out of her office for a few minutes, then returned with a colorful brochure illustrating major areas of the brain with basic information on what they controlled. I was elated. This was the start of my obsession to learn all I could about every aspect of what I’d been through.
Some interesting physiological things happened that day. First, my menstrual cycle started again, a little less than two weeks after it had just finished before Easter Sunday. The second thing was my mind blanked on how to dress for the weather, which was in the mid-30’s at the time. (Sweater and leather coat? That’s cold, right?) At first I felt nothing as I walked the short distance from our car to the medical building, invincible to the bitter cold. But when I came out, the chill wind found its way to my skin and I shivered and closed my leather coat tighter, my body remembering just how sucky the mid-30’s can be.
My follow up appointment with my neurosurgeon was the week after. I arrived armed with about a dozen questions and had also brought a very detailed (possibly obnoxiously so) report on my well-being since we last saw each other. This was part of my new agreement with myself to have a more adult approach to my health, to include coming prepared for doctor appointments and generally taking better care of myself. I did realize though that there was no way I could have avoided this incident, as they only had unproven theories on the causes of meningiomas. I doubted that eating more leafy greens and regular exercise would have helped. ( Though I had at one point decided to go with the mutated chromosome #22 theory, which just sounded more X-Men and maybe I’d get some cool super powers out of this ordeal.)
My doctor answered all my questions with patience and understanding, for example explaining the weird pulsing area in the middle of my scar as merely brain fluid returning, not alien offspring about to break out of my skull. “Will I get the feeling back here, where it’s numb?” I gestured to where the titanium mesh lay. “It should,” she said, but added gently, “but it might not.” Each case was different, was what she meant. Ok, I can live with that. Same for when I asked if my hair would grow back. She said it likely would, but don’t be surprised if it doesn’t. I asked her to explain the titanium mesh, and she said she had put a double layer but wasn’t able to find a sample of it in her office for me to look at. “Do I have to wear a helmet or something if I go to a baseball or hockey game?” Not necessary, was her answer. It would be as hard as my skull.
Then I asked her about the tumor.
“What did it look like? If I looked online could I get an accurate physical description of it?”
She looked thoughtful for a moment. “The thing that surprised me most was how firm it was. I had to use scissors finally to remove it.”
“Like how firm? Like a racquetball?”
“Yes, like a racquetball. Only harder.” (Eek!)
She advised me to wear sunglasses and earplugs in public places for a while to keep me from being overstimulated. We discussed my timeline for recovery, driving and going back to work. She said it had to be gradual, and not to push myself. It could be another month, but I would know best how I was doing.
We went over my husband’s proposed plan for my gradual return with her approval, and she gave me permission to return to the internet and texting but not to overdo it. Just an hour a day to start then build it from there, which I was very glad to hear. At last, research can begin on what the hell happened to me.
She had been in agreement with my oncologist about observing things for six months then doing another MRI. But before we left, she showed us the image of my brain with the meningioma for the first time. She and her assistant were probably used to all sorts of reactions when this took place, most likely ranging from suppressed screams to rending of cloth. I chose rapturous wonder, then quiet horror as I realized I was looking at my brain. My BRAIN! Not my lungs, or my kidneys but the very organ that ran the show that was me. And there was the nasty bit of business, sordidly lounging about like Jabba the Hut in tumor form. I stared at the wonder of it, the grossness of it as it languished near my skull, unable to grow further as it had been discovered like a cruise ship stowaway. It creeped me out in an indescribable way, like a passage from an H.P. Lovecraft story. I was speechless!
“Good thing you didn’t show us this before the surgery,” I heard my husband say, ever the one to speak what I was thinking loudly in my head. “I was freaking out enough.”
I took out my cell phone. “Can I … take pictures?” I just had to have these images for later reflection. But certainly not to share on Facebook. Dear lord, no.
I raised my iPhone up to the screen and took a few shots. It was, in fact, the size of a baseball – no exaggeration there. How I didn’t feel that in my head is a complete mystery. The faint twitterings of hysteria were forming in the back of my reptilian mind only to be calmed down by the more advanced areas of my brain. “There, there,” I sensed my left prefrontal cortex saying in a soothing voice, possibly like HAL from the movie 2001 Space Odyssey. It put gentle arms around my trembling amygdala. “ The big bad meningioma is all gone. All gone! Now who wants a strawberry milkshake?” Oh, boy. Milkshake!
Meanwhile, I was definitely losing the calmness and clarity I had been experiencing the first two weeks after the surgery. The more stimulation I received, the less happy and relaxed I was. The first indications of post-brain surgery depression were creeping in and I found myself watching Flowers for Algernon and comparing myself to the protagonist, Charlie. The experiment had failed, and I watched Charlie’s grim return to mental retardation after soaring the heights of genius. By the end of the movie he opted to run away from everything he had accomplished and everyone he had loved, preferring solitude to pity.
My own mental heaven was dissolving around me and I feared a return to my former emotionally fragile self. I found myself wondering if this would be my fate as well. (What? No super powers? No more Oneness with the Universe? Why did it have to be this way? Why??)