Anniversary

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.”

Alan W. Watts

I’m quieter inside these days.  Calmer.  Even when I’m stressed, moments later I can talk myself off the ledge.  I have an acute awareness of how small I am, how delicate, particularly my hands. I’ve never perceived them as the fragile constructs of bone and muscle that they are, nor was I ever really aware of my physical boundaries.  I was fearless and strong once, a Viking, and now it seems I’ve become a fragile flower requiring more rest and more planning as I move through life.  Well, maybe not so delicate.  I relearned burpees in bootcamp and ran my first 5K marathon last year, after all.  Not a half marathon like I wanted to do, but not bad.  

I have strategies now, and I use them.  

I’ve found myself solving problems in unexpected ways on occasion, perhaps partly due to meditation, and some of it due to neuroplasticity.  I had read that I’d find myself doing some things a little differently following surgery, and there were indeed some small changes in my behavior.  Not huge personality changes, which would have caused concern, but small imperceptible things unnoticed by friends and family.  But I notice them, in the quiet garden of my mind.  I watched as new flowers grew in areas once trodden on and crushed, and dead spots given new life in different places.

I’m also happy to report I’m in a new music project, which came completely out of the blue.  Somehow I got shanghaied one afternoon by the group that had recruited my husband on drums a couple of months before, and that brief experience was enough to convince me that I was ready to start playing in a band again.  We just had our first proper show, and I actually sang lead on a song I had written in the 90’s.  Though I had a little anxiety about how my mind would respond to being onstage again with its variety of constant environmental changes, I found myself totally in control and relaxed.  Super focused, even.  Ingrained instincts from years of performing came back to me, much like when I had first started driving again.  Like riding a bike, as the saying goes.  

It was May when I was confident enough to get behind a wheel again.  Who knew there was so much involved in driving?  Your hand reaches down to turn the key, your right foot steps on the break while your hand reaches for the gear shift.  You check for oncoming traffic in front and behind me, put the car in drive, put on the brakes to stop at the stop sign, continually survey the scenery, make a right turn, put your  foot on the gas pedal with just enough pressure to keep moving at a steady 20 mph, etc.  Somehow all of this happens automatically in microseconds.   I feared a moment of forgetting like when I was first confronted with the task of putting my contacts in, but thankfully all the stored information was intact and my body knew what to do.

Then there was my inevitable return to public places where there would be people,  movement and noise.  My first venture took place at our local market.  Equipped with my black beanie, big dark sunglasses and earplugs, I had been fine until my husband walked away and left me for a moment  standing near the deli counter.   I became frightened and anxious as my brain struggled with the carts moving past me and people yelling their orders over the counter, or random conversations nearby.  I also felt terribly self-conscious standing there, a strange creature looking like a refugee from Andy Warhol’s Factory. (“Is she trying to be cool or something? What’s with the Foster Grants?”)  I felt like a fragile old woman, afraid to move, staying stock-still until my husband came to rescue me.  He wasn’t gone very long, but long enough for me to grip his arm tightly like a life preserver as we continued with our shopping.   

There was also a company movie outing coming up to see the recently released Avengers: Age of Ultron. I had facilitated the rental of a movie theater back in December and, having already gotten my doctor’s permission to see it,  I was determined to go no matter what.  My best friend drove me, and I entered leaning on her arm as I walked slowly to where our theater was.  I was again equipped for the outside world and hoped my appearance wouldn’t make people feel uncomfortable.

I received a variety of reactions:  Hugs, no hugs, declarations of love, general well wishing and gladness to see I was okay.  But some people were nonchalant or kept their distance.  I saw them looking at me from a distance as if wondering if it was really me.  Perhaps they were. Soon the lights went down and the movie commenced, and we could all escape into the sweet haven of Marvel movie magic and forget about life and brain tumors for a couple of hours..

I kept my sunglasses on and my earplugs in, which was good because there was a LOT of action and fast movement.  And noise, and flashing lights – I should have assumed there would be.  What action movie these days doesn’t have a lot of people zipping around, shooting and spectacular explosions?  There were a few moments when I had to cover my eyes but for the most part I got through the whole movie intact.  Afterwards, when the lights came back on, more people noticed me and more hugs and how have you been’s were exchanged.  It felt good to see everyone, if only briefly and in a dark theater.

A few weeks later, we planned an actual visit to my workplace prior to my return to make sure I could handle it.  Just a half hour, then we would go to the art museum to see the Kahlo/Rivera exhibit.  This was a lot for me in one day, which might have been why I forgot the tickets.  I realized  I had forgotten them halfway to our destination and we didn’t have time to turn around and get them. This was very upsetting – already things were not going according to plan.  How did I not grab the tickets off the table as we were leaving?  I cursed myself for this oversight, then my husband said, “Hello!  Brain surgery!” – which had become our favorite saying every time I was hard on myself.  I calmed down, momentarily forgetting that my triumphant return was all planned. I was supposed to lean dramatically on my husband’s arm while making my way around the two floors, perhaps having rose petals thrown in my path by my co-workers.  A six piece New Orleans brass band would be playing an instrumental version of Praise You by Fatboy Slim and there would be cupcakes for everyone.

Well, there were definitely cupcakes.  

My husband dropped me off while he went back to the house to pick up the tickets, and I went to deal with things alone.  I had brought cupcakes with me, having used the supplies I had bought for cancelled cake jobs.  How excited I was to see everyone! Also I longed to belong in a community again where people needed me.  I’d been alone too long without human contact other than my husband.

People noticed my sudden appearance and soon a happy crowd grew around me (and my cupcakes).  Again, a mixture of reactions:  embraces from people I didn’t expect any physical contact with, a person clearly trying very hard not to cry, and then some people just looked over and smiled and kept working on whatever they were working on.  But I do vaguely remember getting a standing ovation at some point.  It was all very overwhelming and I was starting to get that overstimulated feeling at the top of my head – an odd buzzing sensation that told me I better not overdo it.

I was getting fully assaulted by bright lights overhead, the sense of the high ceiling above me, everyone coming up and saying hello, people moving and chatting.  Someone walked me to the big leather couch to rest and I sat there and did my best at conversing with two co-workers while I waited for my husband. He arrived about 15 minutes later, and then we went to the exhibit. I found myself struggling to stand upright but enjoyed it immensely nonetheless.

Around the same time I had my first venture to a restaurant.  I walked in, again leaning on my best friend’s arm, trying hard to ignore the constant noise of forks hitting plates and the loud clatter of tables getting bussed.  It was very busy for a weekday, and I didn’t expect to see anyone I knew. We were standing at the door waiting for a table when I saw a keyboard player friend of mine. I watched his expression change from quiet recognition to surprise and wonder, which told me he was aware of what had happened to me.  He smiled when we made eye contact, and immediately got up and walked over to hug me.  It was the same flavor of hug that I had gotten from many, the kind that tastes sweetly of gratitude and joy that someone you know and love  is still alive.  He then told me that a mutual friend had told him about my surgery and how great it was to see me up and around.  He asked me what happened, and I gave him a quick summary.

This type of encounter was going to happen fairly frequently in the next few months but would soon wind down, much to my relief.  There’s only so many times you can relate the same story, you know? But I really don’t mind talking about it and answering questions.  You have to catch me at a good time though, when I’m speaking confidently and well.

My medications had been stopped, and my head was clearing.  But my hair hadn’t grown back yet and it was getting too warm to wear my mom’s knit caps.  So, I went into Susan’s Special Needs to get some reasonably priced head coverings.  They had quite a variety of bras, bathing suits, wigs and hats to dress the fashion forward chemotherapy patient or woman of a certain age having hot flashes. Never in a million years did I ever think I would have any reason to go in there, but once I went in I found them very compassionate and helpful.  The saleslady started off with “How long have you been in treatment?”  I took a deep breath and said, “I’ve just had brain surgery and just need something until my hair grows back,” which was still weird to say out loud.  She nodded understanding and directed me to a private room with a mirror and a variety of scarves, turbans and hats, and my husband and I had fun going through some silly ones then settling on a simple style.  I picked a black and a grey version, and after purchasing them we emerged into the hot, sunny afternoon.  I pulled out the grey one and quickly switched it from the pink beanie my mom had knitted for me.

“Well, that wasn’t so bad,” I said, adjusting it in the mirror.  I looked over at my husband. “Does this say cancer patient or does it say hipster?”

“Totally hipster,” he said.  I sighed and looked at myself again.  Well, I can rock this look for awhile, I thought. And so I did, but it did get old once I tired of being the tragic victim of a brain tumor.   It soon lost its novelty and I became annoyed with having to pull something over my head to hide the scar every day.

I have vivid memories still of surrendering to the anesthesia, of time ceasing to exist and swimming in darkness.  Of emerging painfully awake, alone and realizing slowly where I was and what had gotten me there.  I remember immediately envisioning a C major scale on the bass fretboard and planning random things just to make sure I could still do it.  Most of all, I checked if I was still me. But then how would I have known the difference?  I just knew and believed I was whole still, and that I had survived brain surgery to my frontal lobe without any major change in personality.  

People have told me that I’m a badass for getting through this.  They never noticed anything different after I came home and I admit, it does seem like it never happened at times. But at night, I still run my fingers over where the violation happened, where skin and muscle were split apart, where the craniotome cut through my skull to expose the intruder and facilitate its release.  There is the small dent in my head to remind me that it really happened, but only I know it’s there.  I can feel it’s sudden appearance under my fingertips after I massage my forehead then move across to my hairline.  It’s not as shocking anymore. I’ve gotten used to it.  It’s a part of who I am now, and hopefully the last addition to my collection of scars that I’ve accumulated over the years.

I remember good things, too.  Like my husband feeding me slices of Kiku apples drizzled with honey.  The day my cat sensed I was okay again after weeks of laying quietly on the bed, suddenly biting me playfully on the eyebrow like she always did. Or the day my best friend and I came up with the best way to remember “meningioma”.  We decided it sounded slightly Italian and perhaps was the name of an island off the coast of Sicily, known for its delicate eel dishes and rough coastline.  (Say it: Menin-JOH-ma!)

This year has been transforming for me.  I’m not who I was, but have become something more.  I have a better sense of what’s important in life and my role on this big hunk of rock spinning through space. Were it not for this experience, I doubt I would have pursued transcendental meditation or made peace with my family, or finally accepted myself for all my flaws and imperfections.  Were it not for this tumor, I would not be who I am today and more appreciative of what’s important in life.   

I hope you’ve enjoyed reading this blog as much as I enjoyed its therapeutic value and finally flexing my writing muscles for a good cause.  My last name means “teller of stories” in Tagalog after all, and this is my story.  I feel like it’s the one I’ve been waiting to write all my life.  And ain’t life grand?  

Oh, yes.  Yes, it is!

 

 

Advertisements

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.  

Interesting.

April 15: Smoke and Mirrors

I am quite enjoying being away from the noise of modern life.   Emails,  texting, the daily deleting of Fab promotional emails – all quiet.  Just ocean sounds and meditation, being fed and watching my cat sleep.  I did keep glancing at my phone, though.  The unanswered emails were in the 600’s by now but it didn’t really bother me.  And I didn’t dare peek because  I knew how it was with emails:  They’re like potato chips; you can’t just have one.  So I enjoyed the quiet.  My mind was a playful meadow of  chirping birds and fluttering butterflies and wondered if this was what retirement was like. It was sweet relief to have nothing to do after years of hustling business, but I wondered when I’d suddenly be overcome with boredom.  For the moment, though, it was enough to observe the changes taking place in my head.

The “tapping” stopped at some point, but my senses were still muffled, my body only feeling so much.  I had to be careful with Q-tips for example, as the deeper part of my ear canal was still numb and the pressure of the swab disappeared at a certain point.  And my sense of smell and taste were still compromised, and continued to be baffling.  I couldn’t smell my cat’s breath up close, but I could smell cleaning products from another room.  Was the brain really that specific as far as distance and types of smells?  Hmmm.

My tasting situation was sadly apparent when my mom had brought me fried lumpia (Filipino spring rolls) that weekend as I had told her I had a mad  craving for them.  How disappointed I was when the nostalgic joy I had sought in this simple dish didn’t happen.  I wished for the sublime chomp of fried spring roll wrapper, which would quickly surrender to tender fried vegetables tanged up with garlic vinegar.  Instead,  I got a mouthful of almost delicious.  Rather than a familiar friend saying howdy-do, I got a stranger on a bus that said nothing for the whole ride.   I sighed and ate two anyway, as I knew how much work had gone into them.

Each day brought me a little closer to being myself again.  A few times when I rested I felt a slight but unmistakable “tuning” taking place in my head, a palpable clicking like the twang of a stringed instrument being adjusted until it hit that magic 440 Hertz.  It was oddly comforting as it suggested that healing was taking place, or so I liked to think.  Eventually this too ceased like the obsessive tapping of my tongue against my teeth.

An interesting behavior change to note:  My mood was extremely happy.  I was very confident in myself, and feeling unstoppable. I was going to write a book, and maybe do a TED talk on my experience and heck, maybe I’d give Algebra another whirl (which was really a stretch as I hated all things mathematically inclined).  I felt I could handle all sorts of things now that the meningioma had been removed.  I wondered if it had kept me from my full potential, and resented it tremendously if that were the case.  But then how was I able to play complicated music and pull off multi-tasking and planning events?  Well, at least up until the last few weeks.  I had wondered why I had become anxious and seemed less inclined to take on the variety of things I normally did with no complaint.   I also recall starting to use both hands when applying things like face moisturizer and foundation.  I had used my right one all my life, but out of nowhere it seemed more efficient to use both.  I suspect it was an early symptom – my right hand was becoming weak and the left hand was answering the distress signal.

I also felt a oneness with everything and an understanding for all, as corny as that sounds.  My empathy skills seemed enhanced, and I wanted to help everyone.  In fact, I felt that was my true calling in life, this need to make everyone happy.  It was so unlike the “me” before brain surgery – I’d been moody and prone to depression most of my life, and lost most of the time.   And now, I had focus and was elated about everything, and believed in myself.  I truly hoped I would feel this great for the rest of my days.  It was wonderful to wake up feeling optimistic and joyful, and I thought wow, this is what it’s like to be happy.  

As a bonus, I noticed my speech  improving, and my cognitive skills.  I could now consistently form complete thoughts, actually visualizing from the left part of my head first before I spoke.  And I was not questioning my vocabulary anymore – I started using some fairly spectacular words without wondering if they were right (of course they were!).  Things were looking up and I was convinced I’d come out of my ordeal a better, smarter person.

I was so happy about everything I felt like telling my family I loved them for the first time, another completely uncharacteristic behavior. My husband fully supported me knowing it was a pretty big deal.  

But for all the build up, I was met with little response bordering on awkward silence.  My twin’s partner said something slightly sarcastic about someone in our family actually expressing their feelings, but that was about it.  I think my mother smiled but said nothing – not exactly how I had planned it in my head.  I had imagined her bursting into happy tears, then we’d all hug fiercely and have a Waltons’ moment. I was left a bit stunned once the door shut behind them, and assumed they were discussing my odd behavior once they were out of earshot.

Welp, as the kids say.  So much for that.

Since then, I have found out that this is a typical response from family and friends if you’ve never actually behaved in any overtly affectionate way before your brain surgery.  I like to believe that they just didn’t know how to respond.  Heck, I wouldn’t know how to respond if my twin said one day “You know what?  I’ve never said this before, but I’m glad you and I are twins.  I love you, sis’!” I’d probably just nod and go back to eating my Cheetos or something.  Ok, maybe not, but I get it.  

As for my euphoric state, there were several reasons for it.  Euphoria is side effect of both the medications I was on (Norco and Keppra), but when I reported this period of mental clarity and joy to my social worker, she told me that shortly after surviving a life threatening situation,  it has been observed that the brain basically has a party for a short period of time after realizing it has narrowly escaped long term trauma or worse.  War survivors and many that have had near-death experiences have experienced this.  Also, in reading Jill Bolte Taylor’s Stroke of Insight she states that damage to your left hemisphere results in your right hemisphere becoming more dominant, thus further explaining the state of bliss I was in. But to understand this concept better, I should offer more detail on how the right and left hemisphere work.  

As she states in her book, your right side takes in information with no organization whatsoever, which is its primary function. It exists in a state of Now. Huge amounts of information involving colors, sounds, sights, names, faces, events, etc. then travel through the corpus collosum, the connection between your lobes, via numerous neural fibers (approximately 200-250 million!) to the left hemisphere where they get sorted out and create an ongoing individual reality. So, with not so much supervision from the left,  I was a happier person because I existed in the present, having less concern over where bits of information needed to go and not diving into past memories for random reference and emotions. 

So how could I not feel invincible and confident, with all these things happening?  How could I not assume this was my new outlook on life forever and ever?  All an illusion, much to my disappointment about two weeks later.  

April 13:  A question finally answered

Our first snow was, as I suspected, just as spellbinding as the grandeur of fall.  I gazed upon sloppy, fluffy piles on the branches of the old maple tree in front of our house, and listened to the ethereal hushed sounds of fat falling snowflakes slowly plummeting through the chill air.  It was a little hard to look at and I had to close my eyes at times – the constant falling motion of the tiny flakes was a bit dizzying.  Still, it was quite gorgeous.  I could have stayed out there longer watching in rapt wonder but I thought it was time to go in before the neighbors started getting concerned.

It’s been awhile since my last post, I admit.  I blame the holidays – the company holiday party, having family over for Thanksgiving and Christmas Day.  I had just gotten the excitement of meal preparation back, and I guess I thought I could handle it – man, how did our moms do it every year?  But I’m happy to say I survived everything with minimal suffering on my part.  I say “minimal” because I admit to suffering significant amounts of anxiety surrounding these events, particularly the company holiday party. It was not the nervous excited version, where I would enter the fray with determination and grit, but one in which I wondered if I could successfully pull all the moving parts together in the end.  I was genuinely afraid I’d hit a wall at some point and things would get confusing and I’d be unable to make quick decisions and well, everything would just fall apart and be ruined.

But I had people helping me and offering moral support, and without them I don’t think I would have gotten through it without bursting into tears, which I felt close to doing on more than one occasion.  I also meditated three times before I finally left my house for the venue.   I had my strategy in mind, which was to get to a quiet place and recover before everyone arrived and periodically throughout the night.  My husband kept an eye on me as well in between socializing and thus I was able to survive the evening exhausted but unscathed.

There’s been a couple of things I’m still experiencing.  On occasion, the aforementioned hypnogogia still returns to entertain and bewilder me.  I managed to write down a couple of them and my theory is it’s a result of my brain occasionally readjusting and coming up with false or illogical information in that time period between wakefulness and snoozeland.  Thus, Steppenwolf did not write “I Am Superman” (it was R.E.M.), and I cannot take my shopping cart from the produce aisle in my head into the real world through a whirling vortex.  

The second thing took me by surprise, much like my sudden inability to spell out loud.  My twin and I were trying to figure out what time to pick up my mother for church on Christmas Day, and I found I couldn’t think backwards in time.  It was like going down a familiar path (“Let’s see…so if we need to pick her up at 9:00 to get there by 9:30, we have to leave at..um..wait.. let me start that over..9:00 am…crap!”) and suddenly being stopped by a dense forest that wasn’t before.  My thoughts just stopped dead and couldn’t go any further.  But I’m sure I’ll hack my way through that forest in time – not a big deal, just more annoying than anything else.

There will be a slightly different format to my next blog posts due to the nature of the content and because some of it will need to be followed by an explanation or supporting information.  You’ll see…it will all make sense (at least I hope so).  And besides, isn’t the new year supposed to be about changing things up?  I truly hope 2016 will be nothing like 2015 but I feel a little more resilient to whatever tragedy might befall me and my own in the next 12 months.  I know, not a great attitude, but what can I say –  it’s better to be a realist in these troubled times.  

So Happy New Year, and let’s keep it real as the kids say.

At 4:27 am I’m wide awake and fully expecting to engage in conversation with my husband. I was mildly disappointed that he didn’t want to discuss my increasingly colorful dreams that were progressively becoming more detailed, but perhaps that could wait until later when he was coherent.  I guess this was to be my sleeping pattern until I was off my meds, but instead of being irritated I was grateful to be home in my own bed,  and it wasn’t routine for a stranger to come in and poke me for my blood at that part of the day.

Upon finally waking,  I heard my husband talking on the phone in the dining room.  He was pacing while he talked, a sure sign of agitation.  It was in his voice, too. I could tell by hearing certain words that he was speaking to someone about the pathology results which we had been told would be ready told by now.  The terror of having cancer that I had put aside in the hospital was again all consuming, and despite my doctor’s assurance that my tumor wasn’t cancerous my stomach tightened and butterflies fluttered madly inside it.   

There was a pause in the conversation.  Someone was getting the information and had put my husband on hold.  We both waited nervously in our separate rooms, terrified by what the voice on the other line might say.  In those brief moments I desperately thought of other things, like what I was going to eat for breakfast or why wasn’t I able to smell my cat’s breath yet when she was right in front of my face in bed snuffling me.

I heard a sigh of relief from the dining room.  “Thank you, that’s great news.  I’ll let her know as soon as she’s up.”  But I’d already heard, and the butterflies in my belly stopped their insane fluttering.  One less thing to worry about.  Now I can just concentrate on getting getting back to normal.  No gamma knife radiation therapy for me!  Whoo hoo!

I decided to lay there a little longer and then nonchalantly walk out of the bedroom to see what was up.  My husband told me the good news and we hugged each other very, very hard.  

“So what’s for breakfast?” I asked, pretending I wasn’t scared out of my mind moments before.

That day he was to return to work officially while my best friend kept an eye on me for the day until he returned.  He helped me shower, and Octavia took her spot on the toilet. I was a little more independent this time and did a little less holding on to the wall, and moved with more confidence.  When I tilted my head back to rinse the shampoo off what little hair I had, the water was hitting the titanium mesh area of my skull.  It was like hearing rain on a metal roof, but the roof was my skull and the house was my mind.  I could hear the patter inside my head and sense the pressure of each water drop. Very alarming at first, then I just accepted it as part of my new normal. I was reminded of the infamous break towards the end of the B52’s song ‘Love Shack’ , which made reference to a roof made of an inexpensive metal that had oxidized (or slang for a girl getting pregnant).

My friend arrived late morning from Ann Arbor while I was laying on the couch waiting for the usual drowsiness that followed my Keppra and Norcro.

She and I had met at work, both unwilling recruits to yet another web design company.  It’s a bit complicated to explain so I won’t bother, but it was very much like an arranged marriage or perhaps a bad blind date that simply didn’t end.  We both got laid off after a few years of trying to fit, but during this miserable time we forged a strong friendship based on heroic acts of emotional support and trying to keep the other amused during the day via instant messaging.  She totally got me, and I got her.  She became the sister I’d never had, growing up the only girl in my immediate family, and she quickly became someone I trusted and could confide in, and also laugh my ass off with.  Amidst our tears of frustration, we giggled  our way through numerous troubled times and hooted at the various obstacles life had thrown in our path.  Well, after the miserable parts were over.  And a few sidecars were tossed down.

Anyway, I hadn’t seen her since the post-op love in, so it had been a little over a week.  We said hey to each other and she took a seat across of me on the recliner.  Conversation was minimal, but we managed a few low key but heartfelt laugh fests.  Mostly it was rehashing about my twin’s behavior when my mother-in-law insisted on coming to post-op, despite my very specific requests.

“Your brother is my new hero!” she declared.  We laughed – I could imagine how things went down.  My mother-in-law meant well, but sometimes obvious things elude her.  Someone had to talk some sense to her, and my twin was no one to mince words.  Things were said and lines were drawn,  and soon she was left in the company of my nephew’s wife while the people I had requested came to comfort me in my hour of need.

About 4:00-ish we were visited by one of the founders of the company I worked for, who I also hadn’t seen since the day of surgery.  He came bearing gifts yet again, including a card signed by my co-workers.  I wasn’t allowed to read yet so I had my best friend read some of the messages for me.

Even Hallmark couldn’t have come up with something appropriate for this occasion.  Can you imagine?  “Glad the surgeon didn’t sneeze and you’re still your old self!” or “Craniotomies are no fun!” or “So they said it was benign?  Let’s celebrate!”  Which is why they had found a congratulations on your new baby card instead, with the words “baby girl” crossed out and replaced with “meningioma”.   

Then he handed me a box. “What’s this?” I asked, recognizing the brand name.

“We took a collection for you.  Go on, open it!”

Inside were the Bose QuietComfort 20i acoustic noise-cancelling headphones. They looked pretty fantastic, and I knew anything by Bose didn’t come cheap and that this product was most likely the result of thorough, meticulous research.  The individual who had masterminded the collection had an EMS background and experience with brain trauma patients, and had explained to everyone that this would help me avoid overstimulation as I recovered.  I was profoundly moved by this gesture and very pleased as I was very sensitive to every noise, no matter how small, and it would be incredibly useful as I progressed from the controlled environment of my home into noisier places like restaurants and markets.   I tried them out and it was amazing how with one flick of a switch I could enter a world of total silence.  It was a wonderful gift, and I felt very lucky to work with such generous, thoughtful people.

As he was leaving I told him to tell everyone thank you, particularly the individual who had organized it, and that I was up for visitors but only one at a time as two would be too much for me in my delicate state.  He said he would convey the messages, and we hugged.   Then he left to get home in time to take his daughters to karate.  I went back to the couch, tired from this brief visit but happy to know that I was missed.  And I admit it was an odd feeling to be on the receiving end of charity, but I didn’t dwell on it.  I had received something we hadn’t thought of from people that genuinely cared about me, and that was all I needed to reflect on.

I was far from ready to return to work, but damn, I realized how much I missed everyone and their wacky ways, a sentiment rarely generated by a normal workplace.  But I worked for the best company in Detroit and I truly couldn’t wait to get back.  I just needed to go slow, be patient, and everything would happen in its own time.  For now, it was enough to eat, sleep, shower, receive visitors and write, write, write.  

I went back to the couch and rested until dinner, and this was the extent of my activities for the next few days.

April 12: Tappity Tap

The building was nothing special from the outside.  It was a dull grey bricked affair, with skinny windows that suggested late 80’s office architecture.  I pitied the people that had to work in such a place, and imagined drop foam ceilings, putty file cabinets and Bunn coffee machines with prepackaged coffee packets so that every cup of coffee tasted just like yesterday’s.  Like I said, nothing special.  But when I first walked into the room a sense of calm and well-being overcame me.  Maybe a subconscious reaction on my part because of where I was, but I didn’t expect it. This first experience sticks out in my memory even now, weeks after completing the Transcendental Meditation course.

Words are inadequate to describe TM.  How do you describe falling in love? How do you talk about the peaceful feeling that suddenly comes upon you when rain is hitting the roof? It’s intangible.  But the benefits I’ve experienced so far are not.  Remember in my last blog when I was having severe neck issues?  After my first day of instruction, my neck wasn’t crunching on its hinges when I turned my head.  I waited a few days to see if the soreness would return, but so far I’m still creak-free.  A miracle?  Maybe.  But I think it’s working.

So far I’ve been able meditate twice a day, as advised.  Now that I’m done with the course it’s a little more difficult – I have slightly less motivation to practice since I won’t be required to report my personal observations to anyone.  However, I’m determined to stay disciplined.  They say it will improve my prefrontal cortex and enhance cognitive skills.  The goal, ultimately, is to be stress free and live in a state of cosmic consciousness.  And by golly, who doesn’t want that?

Meanwhile, sensation is returning to the area of my head where the titanium mesh replaced my skull.  One day I ran my nails gently over that area and experienced a prairie grass wind tickling of my nerves. Weird, but not unpleasant – but mostly weird.  This has all been a weird trip, though. I dare say nothing really freaks me out anymore.  Except…this!  Behold, the tools of craniotomy!  

Ooh.  Shiny, shiny.  

Maybe someday  I’ll be brave enough to show my pre-brain surgery MRI images.  Doesn’t everyone at some point of their medical trauma blog?  Something with a disclaimer, like “The images you’re about to see will shock and horrify you.  Or not, if you happen to be one of the few that are morbidly curious about such things.”

Ha.  Maybe later, kids.

The swelling had gone down somewhat, but still decided not to put my contacts in.  I had never gone this long without them and wondered if there was a limit to how long they could sit in saline without eventually becoming one with it.  I couldn’t wait to get these weighty spectacles off my nose. They kept falling down due to the heavy lenses and my lack of proboscis.  

Some time during the day, I decided to keep a daily journal of my progress going forward.  I thought it would be helpful when my two week follow up appointment came up, as there were already things that I had questions on.  Like this smelling thing -I wondered how long it would last or if it was permanent.  And I still wasn’t feeling myself in a number of ways.

I passed the day as a child would, eating, sleeping and taking some time to write.  I was in between two journals – a daily one and the other one I had started to try and remember everything that had happened in the hospital, before I came home. I decided this would be my daily regimen, because one day these events would be hazy memories though they were still so clear in my mind at the moment.  I wanted to remember everything.  

We went for a walk again, and I made it two street corners further before I got too tired to continue.  I looked at the goal before me.  The main street we were following had a series of traffic islands, which made up a little track of sorts, and if you went all the way around and two islands more, it was about a mile.  How far away the other end seemed!  But I made up my mind to go all the way around very, very soon.

The day was passed in this manner, with two long naps in between activities just after I took my pain and anti-seizure medication.  I couldn’t write for very long, but it was something to do when I was really awake and focused.  I wasn’t allowed to look at the internet or text, and I wasn’t really in the mood to watch American Idol or Judge Judy.  We were expecting his best friend and his mom for dinner, so soon enough they came bearing bagels and lox, and Venus razor blades for me because my leg hair had become quite unseemly in a little over a week.

There were some things I had noticed that day.  Prior to my surgery, I had noticed a constant heartbeat in my right ear when I leaned over or if my head was pitched over slightly.  I had thought it would be gone once my tumor was removed, but no such luck, so this was a concern.  Another was the burning sensation in my left breast when I turned over, which was puzzling because it had only happened when the pain med was administered through the IV in the hospital.  Maybe that would go away eventually, but for now it was alarming and annoying every time I turned to lay on my left side.

But the most bothersome thing was happening – or rather, that hadn’t happened yet- was the fact that I hadn’t gone number two for over a week.  Part of it was a known side effect of the pain medication, but part of it was just the normal experience of brain surgery.  Apparently the lower intestine is the last part to wake up, so it was very important that I keep taking the stool softeners even though they didn’t seem to be doing anything.  You’d think I would feel myself getting backed up, but I just didn’t feel anything.  But I would be patient.  One less thing to deal with, right?

We had dinner, then his friend went off on an ice cream mission for our dessert.  It had been my husband’s intent to not leave me alone with his mom, who didn’t quite understand my speech difficulties and who would most likely ask me complicated questions I couldn’t answer in my current condition.  The plan was going well until my husband decided to go in the kitchen under the pretense of cleaning up.  

“Does it hurt?” she asked, a beat or two after he left the room.

“No, actually, it doesn’t.” I looked down at the remnants of my bagel and lox and wondered if I should feign a seizure.

“Really?  I wonder why that is?”  

“Oh, well…I think it’s because … you really don’t have nerves in your brain.  I think that’s why.”  Long pause as I fumbled for the next sentence, as I lost track of what we were talking about.  “Also I’m taking pain medication for any headaches I might have.”  Whew.  Got that out.

“And what kind of medication would that be?”  

“Um…something…that sounds like a whale?…Nor-something?…”  

My husband had returned, realizing I had been alone with his mom for an unacceptable amount of time.  I gave him my best stink eye, or what I could manage with a partially swollen face, and that was the end of my conversation with my mother-in-law for the evening.

Day three of my return home had gone well.  Well enough, anyway.  Maybe tomorrow my head would feel back to how it was and this teeth-tapping thing would stop.

Tap tap tap tap tap tap tap tap tap tap tap tap switch! tap tap tap tap tap tap tap….

April 11: Superhero Badass Ninja

I feel like I’m experiencing fall for the first time.  Honestly, I hadn’t expected such an emotional reaction to the colors of the changing leaves before.  It’s like a miracle I’ve been living with for years and finally noticing.  

Time stops as I gaze upon the vibrant reds, lustrous oranges, the golden yellows all combined tastefully into one vivid psychedelic vision.  It was not unusual for my attention to be completely arrested by  a particularly stunning tree, noting every nuance of every leaf and its every subtle bit of coloration and veining.  Maybe winter will hold new surprises. Perhaps the falling snow will bring tears to my eyes or compel me to do something diabolically creative.

Speaking of surprises, I’ve only had a minimal amount of new (or newish) issues lately, but nothing really worth reporting to my doctor who I feel would dismiss whatever I brought up as all part of the recovery process anyway.  Anything that’s not life threatening or personality changing seems to fall under this category.  Dents are deepening, and my scalp seems to be resettling.  I experienced a weird clicking sensation in the indentation above my left eye, where presumably a burr hole was located (Burr holes are created during a craniotomy to enable the surgeon to lift the skull plate.  Just writing about it makes me squeamish!)  I can only compare it to a bug adjusting its position under my skin and settling back down again,  or the crinkling of an empty bag of Doritos.  Ick!

I’ve also been having neck issues. I can only hold my head up or in one position for so long before it gets stiff and uncomfortable, and there’s particular soreness where it meets the back of my head.  I never had this problem before, and it seems to be worse in the afternoon or in the evening.  The most I can do for it when it happens at work is take a break and head down to the 5th floor and lay on a bean bag chair, where my head can be supported when I lay back, or ice it when I’m home if it’s particularly bothersome.  

I have also found out that I can’t quite take the organizing load that I could before – at least not all at one time. There’s a definite limit before my brain refuses to continue, like a runner stopping to catch their breath before moving on.  My strategy has been to give myself a little extra time for certain things,  like planning major events or making travel arrangements, and taking brief breaks doing mindless tasks when things get too much.  I get back to it right after, and stuff gets done.

And life goes on.

I’ve been wondering lately how many years the brain surgery has added to my life.  There is no question that I don’t have the energy or motivation that I used to for certain activities that I once enjoyed – such as the annual Dinner Crawl that my company had last Friday.   I actually wept the night before, thinking about how I couldn’t participate this year because I knew I wouldn’t be able to deal with the loud bars and walking.  I know, I ran a 5K and all that, but it wiped me out for the rest of the day, and it was 45 minutes of focused energy.  How would I deal with a series of bars, loud conversation, an onslaught of mental processing that would last maybe 4-5 hours?   It scared me, to be honest.  So I declined the calendar invite, and left feeling just a little sadder than when I arrived that morning.  

Halloween was also somewhat disappointing in that I really wasn’t feeling it this year. It used to be my favorite holiday and for some reason I felt no inclination whatsoever to participate.  Was it just a matter of time before I felt this way or did my craniotomy accelerate the emergence of old person thoughts in me?  Or are these the slight changes my surgeon was fearful of after tampering with my frontal lobe, the personality’s hearth and home?

Perhaps a combination of both.  Life goes on, and I’m grateful that it decided to do so.  Besides, who am I to complain when most of my Me has remained intact?

In the morning we discovered that my left eye was slightly swollen – not too Frankensteiny but enough to make me mildly unrecognizable to myself.  My eyes were tiny things, like a kitten at two weeks old.   My husband called the doctor’s office to ask if this was normal, and he was told yes, it was and not to worry and maybe put a cold compress on that side to help with the swelling.

I heard this conversation from my bed, as Octavia was padding over to me.  She sniffed my face as she did every morning, and I noticed I didn’t smell her breath.  It was the usual odor of cat food but now it wasn’t there to annoy me, which I found somewhat odd.

I heard the coffee grinder and wondered why I wasn’t smelling it from where I lay.  Maybe I never did?  Then I heard it brewing and wondered where that comforting aroma of morning coffee was.  Again, I briefly doubted it ever existed before realizing I just couldn’t smell these things.  

“How about toast and bacon?” my husband called from the kitchen.  Okay, this was the last straw.  Bacon should have been the next best thing to coffee and I knew he was making it and I wasn’t smelling it.  This was really harshing my reality.  What kind of post-brain surgery nightmare was this where I couldn’t smell things like coffee and bacon?

I got up slowly and made my way to the bathroom, making sure the door was unlocked.  This was a new arrangement in case of emergency, which I needed to get used to because normally I would have locked it behind me for privacy.  I went to the sink, and I washed my face for the very first time in my own bathroom with my own face products. It was such a damn good feeling to be able to do this simple act of personal hygiene… except I noticed I had a hard time feeling my face.

There was general grogginess and head numbness, inside and out.  The inside of my mouth felt quite peculiar, like we existed in two different universes and were thinly connected by sleepy nerve endings.  An odd tightness perhaps – indescribable. I found that I had started a compulsive habit of running my tongue against my teeth, top first then bottom, touching each tooth quickly.  I marveled at this sudden onset of OCD, unable to stop what I was doing until I had finished the task.  When I brushed, I did it furiously and forcefully, trying desperately to feel the sensation of bristles pushing against my palate.  Nothing but a hint of pressure and the sound of brushing, and the feeling of vast amounts of toothpaste foam building up.  

I spat it out and rinsed, then thought about putting my contacts in but decided against it after looking at the state of my left eye. I thoroughly dried my hands on the towel (and I do mean thoroughly – I found the sense of any moisture on my hands almost painfully distasteful) then ambled over to the dining room, reaching out for the door frame, then the chair then slowly sitting down at the table.  I was a sloth, setting motion to my own slow rhythm, unable and unwilling to go any faster.  I sat down, and felt the hardness of the chair, as if I’d never sat in it before.   

It was then that I discovered I had an acute awareness of everything around me.

It was extraordinary, this sense of crookedness, of the uneven wood floor that had felt so solid and flat when it was first installed.  I could somehow feel all the objects in the room – again, hard to describe, but there I was feeling like a superhero badass ninja.  “So this is what it’s like to be Bruce Lee!”  I thought, feeling the smooth polished surface of the china cabinets with nothing but the imagined tendrils of mental awareness. No wonder he had such lightning fast reflexes and seemed to have an uncanny awareness of attacking foes, even when surrounded.  (Neat-o!)

I closed my eyes for a second, reaching out with my consciousness.  It was nothing distinct, just a vague awareness of each piece of furniture, all the surfaces of the desk, the table, the carpeting.  I wondered briefly if I could talk to the cat with my mind Beast Master style , and tried to summon her by directing my thoughts at her head.  Much to my disappointment she didn’t respond, but maybe even telepathically she was ignoring me.  (Damnit!)

My husband interrupted my epiphany, placing breakfast items on the table in front of me:  coffee, toast, mango peach jam and butter.  I bit into my toast and was delighted at how I could taste each and every flavor as I chewed, and the mouth feel of the crunchy tender texture was the loveliest thing.  Everything was saying hello in the most cheerful way in my mouth, each food item rolling playfully over my tongue, each bite a repeat performance of the last cavalcade of flavors. (Wow!)

But when I bit into the bacon I was immediately disappointed.  It was mostly texture, but no flavor.  (What the ….!)  Missing my bacon high, I reached for a sip of coffee which was almost as incredibly delicious as the toast, and I could finally smell it when it was right under my nose.  Same with the bacon, which suggested to me that something in the brain could tell the difference between close objects and far away objects smellwise – which was even more puzzling because who the heck knew the function of smell was so complicated?  I concluded that something must have happened in surgery that had altered my sense of taste and smell. I hoped it wasn’t permanent. But if it was, I could probably live with the minor hardship of not waking up to the smell of coffee and bacon in the morning. A small sacrifice to retain my Me-ness, I thought.  Two days after brain surgery was hardly the time to be fully recovered, and I assured myself that these missing experiences would return in time.

Breakfast was a tiring affair, and so I spent some time in the recliner afterwards listening to some Pink Floyd as I waited for my sister-in-law and mom.  My husband had chosen a more recent recording, made up of unfinished sounding instrumental tracks that all faded at the end.  He hoped this wouldn’t overwhelm me, and it didn’t seem to.  I just sat there, quietly existing and waiting for my mom and my nephew’s wife so I could get my hair shorn.

They arrived and quietly came in and I soon found myself sitting in a chair with a big towel around my neck, covering my shoulders.  I showed my nephew’s wife the picture that I had intended for my stylist.  The model had a pixie cut, super short and ready for hot weather. She looked it over. “Cute!” With a spray bottle, she wet down my hair then commenced snipping. Through my medicated daze, I soon felt air on my scalp.  She gave me a mirror and asked me if it was short enough. 

“Shorter,” I said.

It was already quite a dramatic change and probably the shortest my hair had ever been.  She had used an electric shaver on the back of my head which was a first for me, and I enjoyed the feeling of my palm brushing up against the bristles afterwards.  High and tight, just like my brothers.

After they left, I took my first real shower – another awesome experience! Since I couldn’t be trusted to not get dizzy and fall over, my husband assisted.  Octavia sat demurely on the closed toilet seat and watched as he scrubbed me down and I braced myself between the wall and the open shower door.  The surgery area was treated gently, of course, and my hair and body were cleansed of everything hospital when I rinsed off.  I felt clean and purified.

Afterwards, my husband asked if I wanted to try and go for a walk and I figured I’d better get started on such things.  I carefully made my way down the steps to the side door and went outside, clinging to his arm as we embarked.  This would be the second time I’d been outside since I got home. 

Slowly, we walked to the end of the driveway.  The world was starting to overwhelm me.  Everything seemed strange and alien again, and yet familiar.  There was an effort to remembering which was probably why nothing was immediately recognizable.

We got as far as the corner, which was not very far at all as our house was only two houses away.  I had felt wobbly from the start of the journey, and soon found out I was unable to turn my head quickly without getting dizzy. And there was so much information to process!  We had been ambitious, and not bad for my first walk.   But I had had enough for the day and needed to be in the house again with familiar things around me, lying in my bed.  We toddled our way back home and I headed straight to bed and laid down, settling gratefully into the warmth of the comforter.  My, how wonderfully warm my feet felt under the cushiony goodness of my blankets!  It was profound, this contentment.  It was a new intense euphoria I’d never experienced before. 

Tomorrow, I told myself, you’ll go farther.  At least past that damned corner!