Mid-April: Memento Mori

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??) 


April 15-18: Step by Step

So here we are, mere weeks from the one year mark.  I’m feeling kind of anxious about the whole thing – an odd, uneasy feeling as April 7 gets closer, as the mere mention of Good Friday conjures up a memory of not knowing what the next day was going to bring and being blind-sided.

I just started singing again.  They needed me to sing backing vocals at the church I play for, and once that was over with I offered to do more backing vocals in this new band I’m in.  Yes, that’s right…I’m playing again, too.  It’s probably the most relaxed I’ve ever been, as the lead singer is a famous local poet and professor of English.  And I happen to know he also teaches a class in the performing arts, so of course it’s an encouraging environment.  The songs are easy arrangement-wise, but the challenge is making them sound interesting and focusing on the lyrics, which is are edgy, beatnik beautiful.  Was it destiny that lead me to this point?  Possibly.  But anyway, my voice seems to be back and I’m damn happy about it!

One of the teaching pastors asked me how I was doing with everything, and complimented me on my singing.  I told him I hadn’t sung in a year and a half, and feared that my voice wouldn’t last through the four hour rehearsal and four services.  I didn’t tell him this, but there’s a small lingering thing I’m going through, and I was afraid it would happen at random moments during the songs and draw attention to me.  It happens very briefly – sometimes when I talk, certain vowels trigger a tickle inside my left ear, a shiver that goes deep into my head make me shudder and look like a dog that’s heard something unpleasant. It makes me shudder uncontrollably for a few seconds during which I hope no one notices.  It only happens when I’m in a conversation, so I’ve been keeping my conversation limited with people other than my husband.  I will keep observing this – I suspect it’s some nerves finally waking up after months of inactivity, and nothing more.  

I am hesitant to say anything about my deficits, but during my conversation with the pastor I mentioned I had had trouble with the moving lights when I first returned to playing.  He asked me if there was anything they could do to reduce any future anxiety when I’m scheduled to play, so  I told him  strobe lights might be a problem (yes, they have strobes occasionally there) and he immediately texted one of the stage techs about it.  I told them I hadn’t said anything because I didn’t want to be a bother, but he said please tell them about anything as they wanted to make my experience there as comfortable as possible.  I was glad I said something – better to do that than quietly stress and hope no one notices my occasional inward struggle.  I left there feeling special and appreciated, and not pitied at all.  

I’m at the last few pages of my journal, and I’m discovering that the last few entries were just brief recollections of the day.  So after this one I think I’ll keep things in the present. Maybe I’ll finish by April 7, but no worries if I don’t.  It’s been very busy the last few months and I did just recently get out of a dark hole.  I thought I was going crazy again, having wild mood swings that I endured silently.  I almost went back to my social worker, needing assurance that it was a typical recovery symptom like the internet said and it would pass.  But, I didn’t.  No time, too busy, and I wanted to wait it out.  There are definite changes in my personality, though, I can sense them.  And I accept them.  I’ll never be exactly the person I was before but that doesn’t mean I can’t be better in other ways.

Recently, my sentences in lengthy emails don’t appear to make sense, at least to me.  I will usually end up simplifying the message, or bullet point the ideas so they are clear and lineal.  Not the most interesting way of expressing myself, but no need to get over complicated or clever.  Sometimes I have something witty to say but lack the mental speed to zing it back out there to the hive mind.  Too much effort, I think – don’t I have to get a coffee order in before the end of the day?

And sometimes I look at my name, and there’s still no sense of recognition or connection no matter how long I stare at it.  My doctor told me this happens to everyone. But it scares me, just a little, all the same.

I decided to watch real TV again, or as close as I could get within the strict instructions my doctor had given me.  I thought Bewitched wouldn’t be challenging, what with the fairly predictable plots (usually involving a spell gone horribly awry and trying to hide it from Darin’s boss or the nosy busy-body neighbor lady) so that kept me occupied for a half hour, then decided the Cartoon Network might be more my speed.  I caught Scooby Doo on Zombie Island on another channel and found myself analyzing the huge differences from the choppy animated version I grew up with, where everyone had no distinct relationship and seemed to just be traveling in a colorful van for no reason.  When did Daphne have a career as a news reporter?  And when did she start having a thing for Fred?  This was clearly no longer the innocent depiction of teenagers off on supernatural adventures – this was in the real world of violence and tragic endings.  I quickly went searching for lighter fare, and ended up watching an episode of Doc McStuffins, and learned that Florence Nightingale was a real person who had first started a school for nursing.  Delightful!

Adventure Time had been recommended to me by people who thought I’d really enjoy it, which I did, but there was a LOT going on that I wasn’t prepared for.   The saturated psychadelic colors, the absurd story lines and random unsettling images were a little too much, but I did like the whole stream of consciousness way it was presented.  I found it gorgeously crazy and decided to watch it again in a month when my head was a little more ready for such things.

I had two visitors this week.  The first one was a girlfriend that I’d met at work, and she brought me orange pekoe tea and a bouquet of flowers.  We had just made dinner when she arrived, and I invited her to stay and eat.  During our meal, I attempted to fill her in on what had happened but in the middle of it I became confused as to when certain things took place and became frustrated and had to start over again.  My husband discussed this with me after she left, suggesting that I leave out some details and just get to the action (“I had headaches and hallucinations, I went to emergency, they found a mass on my left frontal lobe, etc.”) .  I followed his advice and was able to more succinctly explain the events to a co-worker who visited that Saturday, one who actually surprised me by asking to see my scar.  Like everyone else who had seen it (which I could count on one hand, and I could barely look at it myself), he said it didn’t look bad at all and marveled at how medicine had become so advanced that I was functioning as well as I was after such an ordeal.  He admitted that he had always been fascinated by psychology and the brain in general, which made me suspicious that he was just visiting me to satisfy his scientific curiosity.  He laughed and said no, he was truly concerned and wanted to see for himself that I was alright.  “Tell people I’m not a drooling vegetable,” I said, and told him to encourage people to come and see me as I was eager to improve my communication skills.  At least at a time – it was still difficult for me to have more than one visitor in the room.

Before he left, I gave him three thank you notes I had written for the founders.  I  thanked the two of them for visiting me before my surgery, and as for the one that couldn’t be there due to business travel I thanked him for his words of encouragement via text that night in emergency.  I had found that while writing these thank you cards (on Snoopy stationery, which I hoped would lighten the mood) my script was very neat and in capital letters, and when I started writing I just kept going on and on and ran out of room eventually, having no idea when or where my thoughts would finally end up.  I’m sure I said some crazy things, but I meant well!

Also had my follow up appointment with the oncologist this week.  I admit it was very unsettling being in the cancer building.  I didn’t belong there and I didn’t want to be a visitor.  Well, who does for that matter – but my tumor had been benign and I was kind of in disbelief that I was actually in this building at all.  But it turned out well.  Not only did they have the best magazine selection of any waiting room I’ve ever been in (Vogue and Harper’s Bizarre!), but my oncologist said the tumor committee had decided I didn’t need any radiation treatment and a six month MRI was the recommended course of action.  He said it with what my husband and I registered as almost disbelief – apparently they had assumed it would be cancerous, despite my neurosurgeon’s firm belief that it wasn’t.  I decided I’d take the better news between the two of them, and besides, the tumor council had spoken.  MRI in six months it was.

When we got home, I dictated an update to my husband who posted it on my Facebook page.  I received about 60 likes in the first half hour it was up.  One cannot deny the power of social media – I was amazed at how many people cared about me, even if I’d never met them or seen them in years.  I also noticed who I expected to express concern, but didn’t at this time.