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!

April 10: Home Again, Home Again, Diggety Dig, Part Two

In my last session with my social worker, I described the uneasy feeling that overcame me whenever I came upon a certain patch of tree shadows during our nightly walks.  From a distance they were harmless and unremarkable, but as we approached and our angle under the streetlights shifted, they morphed into something alien and menacing. My steps would become apprehensive and I would cling more tightly to my husband’s arm, the anxiety quickly escalating as we got closer then disappearing altogether once we crossed into safer territory.

She said a physical therapist would give me advice about vestibular issues, which I seemed to have been plagued with as I had mentioned balance problems before.  She suggested I look at a stable, vertical object such as a house,  and not at my feet where the evil shadows were.  Which actually made sense – I would try that instead of avoiding the street or being guided to safety, eyes tightly closed, being guided by my husband’s voice.  Sure it was cute hanging on to him like that,  but also it made me feel like a blind person being assisted across a busy intersection.  I vowed to take her advice and conquer this new fear, like everything else that had been an issue since my brain surgery.

Was this really the last thing I had to deal with?  I had run out of incidents happening out of nowhere, and I was feeling quite confident about my general well being and ability to cope with life.  She seemed to read my mind and asked if I had thought about stopping.  I said I had, which was true. I didn’t feel the therapy was necessary in my current state, which as previously mentioned was as close to normal as it had ever been since this whole affair.

We both agreed it was the right time, and so it ended up being my last session with this wonderful woman who had helped me get through the mysteries of my recovery.  I was truly grateful for her advice and guidance, and so glad I swallowed my pride and put myself in the hands of another person more experienced with head traumas.  Somehow through the magic of emotional intelligence she understood my intentions, and all my damaged brain attempts at explaining things. It was so rare to meet someone like that, who could just figure you out with minimal effort on your part.  It was a very comfortable relationship we had, and so I wasn’t surprised that she picked up on my contemplations regarding ending my sessions.

I wasn’t scaring her, as she put it, and she was totally comfortable with me taking the wheel and driving the rest of the way on my road to recovery.  She also mentioned that some people taper their sessions off, or stop for a while and come back when they need a “tune-up”.  I said I was fine  with ending things immediately, and so she agreed to give me a discharge from her services. Fortunately, this was towards the end of our time so we wrapped it up by expressing our mutual fondness for each other, and she gave me a hug and wished me good luck.  

Or parting was a little bittersweet.  I had come to look forward to our Wednesday sessions, describing new neurological oddities I was puzzled or upset about, and getting some kind of plausible explanation from her.  I could tell she enjoyed her job,and I found this inspiring. She was damn good at it.  But she was a comfort that I would no longer have, because now I would have no one to talk to about my brain surgery that would really understand things from my point of view.  I had gone to group therapy and found it a little wanting, as no one there had my specific head trauma and I really just wanted to find someone – anyone – who had also undergone a craniotomy.  So despite the fact that we all shared similar experiences, I just couldn’t connect, though perhaps I should have given it more time.  Plus there was 11-14 people in the room, which was far too many for an introvert like me to be comfortable communicating with.

Therefore, I felt a little panic as I drove away, wondering if maybe I had made the right decision to stop.  Or maybe it really was time for me to move on and this would all become an unpleasant memory, soon to be forgotten by the gentle erosive fingers of time.  Even now, certain details and timelines are lost that I swore I’d never forget, but you know – life happens.  And some things need to get tossed to the side to lighten the load.

I walked carefully up the stairs, steadying myself on the railing.  I headed straight for our bedroom, holding on to the walls until I laid down. I was feeling light-headed from the medications and still a little unsteady.  

“I’ve hidden your laptop, just in case you get any ideas,” he said. Oh, he knew me so well.  I’m sure he thought if he hadn’t taken this action I would defy my doctor’s strict instructions and peek at my Facebook once he left. 

“Will you be okay?” I detected a hint of worry in his voice. He had to leave for a round of afternoon meetings, which I knew he was hesitant to do.

“I’ll be fine.  I’m just going to sleep now, I think.” The doctor had said sleep would encourage healing so I was keen to get on with it. He kissed me on the head, and left.  I laid there, in the quiet of the sunny early afternoon, grateful to be back in my own bed.  The comforter was comforting,the air was clean and free of hospital smells. But something wasn’t quite right.  I felt an odd crookedness laying there, like I was being tipped backward. I checked my position and there was nothing wrong – nothing had changed in the mattress.  Weird, I thought.  

Octavia, my darling little ragdoll cat, had been observing from a distance when I came in.  I had been gone for quite a while by cat reckoning, and she sensed something wasn’t quite right with me.  When she jumped up on the bed, she sat a little distance from me, observing, processing.  Just looking at me, as the silence grew around us, human and cat.  Was she going to come up to my face like she usually did, and give me a playful nip on the cheek or eyebrow?  I was actually terrified that she would, because I didn’t have the strength to deal with it.

She seemed to come to a decision and simply laid down, not too far away from me. I drowsed for a bit, then when I woke up she was still there.  She had concluded that I was wounded, and that needed to be respected.  Perhaps the white gauze taped over my six inch suture was her first clue, but I’m sure my smell and body chemicals were all different to her now.  

We slept.

A little later, I was wide awake and the sun was shining, diluted but cheerful through the blinds. I still felt crooked and wondered if I should just keep lying there (um, yes) or do something. I looked at my cell phone, and thought, oh, what the hell.  Just a few seconds. Just a quick peek at my Facebook to see what everyone was saying about me.

I ended up checking my Facebook (something close to 300 Likes from my husband’s last update, which was astounding and some touching messages) looking briefly at my emails from work (they had started attempts to survive without me) and a quick look at some texts that had been sent since I went under the bone saw.  I don’t know how long I took doing this, but it didn’t feel like any more than maybe five or ten minutes.  I wondered what the big deal was about not looking at my phone or the internet, as nothing serious happened after I put the phone back down.

My husband came home and commenced making the best pork chops I had ever had.  Maybe it was the fact that it was the first non-hospital food I’d eaten for a while or maybe he’d finally gotten the hang of cooking without my guidance, but they were perfectly seasoned and barbecued to juicy perfection.  I hadn’t felt hungry until I took a bite, and then I was suddenly RAVENOUS.  I ate off a breakfast tray as we decided to wait until the next day before I moved into the dining room. My husband was so pleased with my appetite which thankfully hadn’t been affected, and brought me sliced apples with honey drizzled on top for dessert.   Each bite was perfectly sweet and crunchy, and the honey was a bonus parade in my mouth.  I’d never eaten anything so wonderful, it seemed.  Flavors and textures were insanely and blissfully magnified.

With all that sleeping during the day, I thought it would be difficult to sleep through the night, but I had faith that my Norco and Keppra would put me out about a half hour after taking them.  My husband came in with a glass of juice for my pills, and as I sat up to take them I suddenly got incredibly nauseous and faint.  I broke out in a cold sweat and felt like I was going to pass out if I hadn’t lain back on the bed.  It scared me how it had come on so fast, and I tried to figure out what could have caused it.  Maybe I ate too quickly?  Or maybe I shouldn’t have disobeyed my doctor’s instructions to not look at my phone or any internet.  Obviously my brain really wasn’t ready to be that stimulated yet.  The overstimulation must have made my body behave in this manner – it was frightening how quickly I had gone from normal to almost losing unconsciousness, which I had never experienced before. I didn’t tell my husband that I had disobeyed instructions earlier, as he would have been quite upset with me.  After this, I vowed to follow doctor’s orders until I saw my neurosurgeon again in two weeks.  

I asked for a cold washcloth for my forehead, which eventually calmed my nausea and took care of the cold sweats.  Back to being excited about tomorrow. More sleeping, eating, maybe even a real shower (Huzzah!).  Also my nephew’s hairstylist wife had offered to shave my head to match the incision area, or at least cut my hair close enough to ensure that all areas were reasonable close to the same starting point.  I actually had planned on cutting it in a pixie style that Saturday, but of course I had to cancel that appointment the day before my surgery,  hoping my voicemail sounded like it came from a sane person.  

But I couldn’t sleep.  My husband had turned on the TV in the kitchen, and it was making me crazy.  He turned it off, and I put in my ear plugs to keep out other sounds – the house, the cars passing outside, everything.  I wanted silence. About 30 minutes passed before I was in drugged slumber again.

I dreamt of darkness. Somehow I knew I was in Maui and sensed it was our honeymoon or ten year anniversary trip.  It was pitch black until we started climbing up a narrow mountain path.  Suddenly the path upwards was illuminated by a glowing salmon-orange color.  There wasn’t much else in the way of imagery – some shops appeared, set up against the mountain side, but only two or three and they were simple thatched roof affairs. The dominant dreamscape was the angled salmon-orange slash against inky blackness which I found quite beautiful in its simplicity but profoundly eerie at the same time.  These were the only things that my previously fertile imagination could come up with.  And also, I didn’t recall ever dreaming in the hospital – probably because I had never actually fallen asleep long enough to get to the dream state.

I woke up at about 4:30 am, super awake and enthusiastic about telling my husband all about my dream.  At first he was happy I was awake at all, then not so much.  He asked for the time and when I told him he expressed surprise at how talkative I was, and asked that we continue the conversation in the morning. He rolled over, snoring fitfully seconds later.

It would be a few hours until the sun came up.  I never really fell back asleep, but that was fine as I would have a whole day of it.  Sleep, and the silence I had longed for since my predicament.  I couldn’t wait.

April 10:  Home Again, Home Again, Diggity Dig

Six months later, and my injured brain can’t get enough.  It is voracious for new experiences and new information, anything from running my first 5K to rewarding myself with a visit to the local library where I got two books by Oliver Sacks, the famous neurologist who passed away this year, and also the Art of Comforting by Val Walker, a topic I’ve always felt a natural propensity towards.  And, I’m once again excited about trying new foods and experimenting with unfamiliar recipes – including the Lion’s Mane mushroom, which apparently has neuroregenerative properties.  No wonder I was attracted to it!  My social worker said this renewed gusto for living is typical of people who have just survived life-threatening experiences – a result of their recent reminder that life is short, and meant to be lived fearlessly and fully.

One strange thing going on, though – I seem to start dreaming before I’m asleep.  The name for it is hypnogogia, and it’s hard to describe. Crazy but plausible scenarios pop up in my mind just before I’m unconscious, like Sean Connery being my father’s brother or something like that, and then my sensibilities interrupt and tell me “This isn’t real – wake up!”.  It’s kind of fun when the script is harmless, but sometimes it can be unsettling.  Very interesting since I’ve never experienced it before the surgery.

My follow up MRI went without incident, though I didn’t quite remember the experience as well as I thought.  The noises had been similarly industrial sounding, but I was still half-asleep during my first two as they had occurred at an ungodly time of day – one at midnight and one in the early morning after my surgery.  I did notice that each image had a different tone, and I pondered how their waveform would look on an oscilloscope.  Very Aphex Twins, I observed, or NIN.  This was sufficiently entertaining for about 45 minutes, then I found myself getting cranky and eager to get the hell out of there and in a quiet place.

And as I suspected, my follow ups with my oncologist and neurologist were uneventful.  MRI images revealed things were stable and unchanged since the surgery, and no radiation therapy would be necessary.   A yearly MRI was recommended, which I would most likely instigate on my end.  Whew!

Also did much better than I thought I would in the 5K I had signed up for.  It really does make a difference when you run with another person – I actually shaved off three minutes from my regular time!  Amazing what you can do when you have a goal and a rib dinner the night before.  And amazing where I am, six months after my brain surgery.  I was feeling quite alive as I sprinted hard toward the finish line.  I was loving the Universe for balancing itself in the positive this time around – it had been a long time coming.  High five, Universe!

This brings us to one of the highlights of my story – the part when I come home from the hospital.  Read on, and celebrate the highs and lows of my return!

The following morning, my mom and sister-in-law arrived sometime after breakfast to help me get ready for my release.  They were there and witnessed the following before my husband arrived to take me away.

First, Todd the occupational therapist had to deem me fit for release.  He was a bespectacled stout fellow, sporting a van dyke and looking like he’d be comfortable in a plaid flannel shirt over a Pixie’s t-shirt.  He took out a brand spankin’ new white therapy gait belt, still stiff from being unused, which he tied around my waist.  Then he instructed me to accompany him to the hallway for a preliminary stroll.  

My enthusiasm undermined me.  I went slowly at first, then got over confident and moved too fast resulting in me losing balance and almost taking a tumble onto the linoleum.  This made him a little skeptical as far as my release went.  We continued our way around the hallways, his hand a little tighter on the gait belt and as we approached my room, we were surprised to see about eight or nine doctory looking people in white lab coats.  They had stopped in front of my room and were all there to see me!

“Hello, there!” said the doctor in front, with a thick Nigerian accent.  “We are here from oncology doing our rounds and wanted to meet with you and see how you were doing.”  When he said “oncology”, I thought, in my inner Yosemite Sam voice that I reserved for such occasions, “Aw, no – ya ain’t comin’ for me, ya dang varmints!  Dr. G said it was benign so go on, git!”  But they all stood there, smiling, being awkwardly friendly and the Nigerian oncologist said “Here is my card. You make sure to visit us!”  I stood there, befuddled by it all and unable to speak my mind because I was still finding it difficult to talk.  I think it was Todd that finally moved me through their collective vulturous gaze and back to my bed where my mom and sister-in-law were equally puzzled at the presence of such a multitude of cancer doctors.

“Jeez!  It’s like the paparazzi!” Todd joked.”Ok, get rested and we’ll try it again.  Sometimes the first time up after surgery is too much at first.”  

I sat on the edge of my bed and recovered, then after a few minutes I was ready to go another round.  I did better the second time, moving decidedly slower and calmer, and avoided turning my head quickly.  As we made our way through the fairly busy hallway,  I told him a little about myself, how I was a musician and been active in the local music scene, and hoped to get back to playing as soon as I was recovered.  We talked about mutual shows we’d been to, which caught the ear of a male nurse as we passed.  I kept walking as a friendly discussion started between them about bands and music and concerts, Todd with his hand on the gait strap around my waist, me in my hospital gown attire moving like molasses, and the nurse attending to whatever he was doing.  It was a perfectly normal, pleasant moment in the neuroscience ward.

We returned to my room and I collapsed on my bed, exhausted but exultant.  “Good job,” said Todd.  “Now I feel better about signing your release.”  My mom rewarded him with one of the beanies she had knit for me, which he promptly put on his head.  “Thanks, it’s really warm!” he said, looking like either a member of U2 or an ex-convict.  I thought, well, I bet he didn’t expect a new hat when he came in to work today, and watched him leave, knowing we’d never cross paths again and hoping we had somehow given him some kind of job satisfaction that day.

Unfortunately, I wasn’t done with oncology yet.  An underling popped in to ask me a few questions, calling out my name before breaking through the privacy curtain.  He asked a few frightening things, which made me paranoid again that my tumor might be cancerous.  He talked about the possibility of it coming from somewhere else, doing another CT scan to make sure that hadn’t happened, and also the possibility of radiation therapy.  (Yipe!  Can’t you people leave me alone already?)

Then my neurosurgeon’s assistant came in to discuss my release, and upon hearing that I was visited by oncology once again stated quite adamantly that I had nothing to worry about.  It was quite a rollercoaster of emotions, which I knew wouldn’t end until we heard from pathology next week.  However, she said it with such certainty that it alleviated some of my fear, and I could get excited about leaving again.

She went over my release instructions.  

“No texting or television for 2 weeks.  If you’re going to watch TV, make sure it’s not mentally challenging.  Try something like American Idol or Judge Judy.”  Oh, boy. Those programs were perfect.  “And no Internet or computer anything, or any reading.”  

I guess they wanted to make sure my injured brain areas weren’t overstimulated in any way.   Sleep was encouraged, which I was delighted to hear. I did mourn the part about not getting on the Internet. What if I had a burning question to answer, like who played the second Darrin in Bewitched? But then again, it would be nice to be unplugged for awhile.  I looked forward to experiencing quiet, both within and outside of my mind.

A very nice male nurse named John facilitated my release, and made sure I had all my papers together and any extra equipment to help with my recovery.  A wheelchair was sent for. Meanwhile, the real oncologist who had been assigned to me came just after my husband had arrived, and he gave us instructions to follow up with him as far as further treatment – whether it had been decided that I should have radiation treatment or not to get rid of what was left of the tumor.  He had a more agreeable bedside manner than his underling and was not so gung-ho about getting a CT scan, which was great to hear as I was really tired of getting scanned by anything by then.  

This was my first experience with multiple doctors being involved – no one seemed to have their story straight.  It was much like the experience my father had before he passed away.  I came to the conclusion that doctors are just trained to make educated guesses, and the rest was luck and good genes.

Finally, FINALLY it was time to go.  I had my release papers, my instructions, my flowers and cards, and any clothes that had been brought from home.  I bid the neuroscience ward farewell and thanked John for all his help.  My mom and sister-in-law wheeled me down to the main floor where my husband was getting the car, bringing me close enough to the doors to feel the warm breeze that was wafting through.  It was all very alien and strange, but I was quietly blissing out. Though I had stayed in the hospital less than a week, I had gone through so much.  I was also unsurprisingly having difficulty processing everything that was coming at me – the interior of the car as I was assisted in, the passing scenery as it whipped by.  I had to close my eyes, as it was all very overwhelming.  Everything seemed a strange yellowy, 70’s Polaroid color, and all the smells were strong but not compared to the sounds that were close to impossible to take in.  We drove in silence, as the radio was too much for me.

We turned into our street, and I stared at the houses, alien yet familiar, like coming back after a long vacation.  We pulled into our driveway, and I hopped out of the van and walked with assistance up to the side entrance.   I’m home, I thought, standing in front of the doorway back to my life.  I’m home!

April 9 – Post Melon Muddling Oddness

For whatever reason, my brain refused to let me write since the last post.  I’ve come up with some worthwhile openings but the grey matter didn’t give a hoot if my posts became erratic and not so scheduled.  It also doesn’t pay to write ahead, as I often change my mind as each day brings some new experience that I feel worthy of discussion. I decided that I can improvise just fine, as long as I have a good start.  Like Hayao Miyazaki, who didn’t quite know how Spirited Away would turn out, I would create as I went along, with no set plot to guide me.  The mind knows what to do if I listen to it.  Things will work out in the end.

So I listened, took some major naps and some time for myself and have had marvelous results.  I’ve actually felt closer to being my old self minus some emotional baggage, and set my attention to other things – like going to my first free talk on transcendental meditation.

Yes, it’s the meditation technique the Maharishi Mahesh Yogi guy taught the Beatles.  But it’s also a thousands of years old practice, and that alone convinced me it’s nothing like scientology.  I wasn’t really interested until a friend of mine from work came up to me shortly after my return and described his experience with such enthusiasm and went into animated detail about how his life had changed. He definitely wasn’t the type to be brainwashed or be conned into something that went against his beliefs, so I thought maybe there’s something valuable about transcendental meditation after all.

This also ties in with finishing the book Stroke of Insight by Dr. Jill Bolte Taylor. She described her right hemisphere experience during her stroke as euphoric, and felt a oneness with everything.  I had a similar experience in the early part of my recovery, and was eager to regain that blissful wholeness with the universe again.  Which is why I bought the book, hoping to gain insight on how she managed to achieve it voluntarily.  After pages of reading about her recovery, the relationship between the two hemispheres as they function instantaneously to form our perception of reality, and occasional flights of delirious repetition about how wonderful it was to be in a state of right brain bliss, it turns out that all you need to do to drink the happy pink punch of the right hemisphere is meditate.  This was kind of a let down, like some gentle explanation offered by Glenda the Good Witch of the North: “Silly brain tumor survivor,  the power has been inside you all along!  Now off with you, and quit complaining. ” (Or maybe the Ghost of Christmas Present in Scrooged is a better choice here).

Anyway, it’s possible that TM is my portal back to that world.   I had never felt so joyful and complete and capable.  I was actually about to attempt algebra problems just to see if I could figure them out – that’s how confident I felt in that state.  I grieved when I first felt the signs of it receding from my waking life and negative parts of my old self returning.

I also hope to gain back some years that the craniotomy took from me. My social worker told me that any time the body is traumatized by major surgery or illness, you age faster than normal.  I had told her I felt so old, and so tired. But I’ve also noticed that it has gotten remarkably easier to let worries go, which is the bonus of all of this forced aging.  I’m experiencing a certain maturity that I’d never had before – which may have been inevitable but instead of happening in the next five years, it’s happening now.  I’m ok with all of this.  And once I get going with the TM my brain will light up like the night sky on Independence Day, and I’ll really be something else.

I discovered immediately that the back of my closed eyelids were completely different now that the sun was up- which was unexpected and kinda horrifying.  They were no longer the usual orangey  color when a light was on, but had changed to a very faint, light green, with dark blue and dark red veiny lines going across. I opened and closed them again to make sure it was real.  (Oh, yes.  Very real.)  I wondered if this was permanent, and what other surprises awaited me as I recovered.

Meanwhile, Nurse Starlord was replaced with Nurse Ponytail, as he sported salt and pepper long hair tied into a neat pony tail.  He was coldly efficient, lacking the warmth of his predecessor.  I had become very sensitive to such things – which nurses gave me comfort and and security, and who were patient and understanding as I stammered, unable to get my sentences out  They wouldn’t  finish my sentences for me like a few of the other nurses, whose impatience I keenly felt. They didn’t bother saying “I’ll find out for you” and responded with “I don’t know, the orders haven’t come yet” when you had a question about your care.  At this point I had developed an intuition about who was truly in the moment of caring and who was distracted by life things that kept them from being more devoted.  Call it a new empathic skill, I guess.  Or heightened sensitivity.

My mother and sister-in-law came to visit, and I hadn’t seen my sister-in-law for at least five years.  We’d had a little disagreement a while ago, my tendency for holding grudges prevented me from communicating with her up until now. But all that fell away as soon as she walked in and squeezed my hand.  Through this one gesture, I sensed that she was willing as me to start over with a clean slate.  It was one less burden in my heart, which I was glad to let go of.

My doctor and one of her assistants came in to remove my head bandages and discuss my release.  I felt like the Joker as I felt the gauze come off, and hoped I wouldn’t be met with something that would drive me so insane that I fell into a life of criminal mayhem.  Although, it would be nice to have an army of henchmen at my command, wouldn’t it?  From what I saw the bandages were bloodless and clean, and once off she examined the wound.  

“Very nice,” she murmured, gently prodding the sutures.   “These will eventually dissolve, so we won’t need to touch this area again.  Just let it heal on its own.”  My husband asked about showering and she said just be gentle and don’t let any water or soap hit the area directly yet.  I was dying to wash the dried gel from my hair, which at the moment gave my hair a bouffant sort of shape.  Also I was glad to be able to wear my glasses again, and see what was going on.

Much to our collective joy, plans were in the works for releasing me the next day, which was pretty unbelievable as far as I was concerned.  I had expected more recuperation after brain surgery, but this was good news as the whole hospital scene was getting very tiresome.  I was also very ready to be back in my own familiar bed and reunited with my fluffy ragdoll cat.  They told me an occupational therapist would visit sometime in the morning, and the outcome of that visit would determine how ready I was to go home.  

This is probably the closest I’ve ever been to feeling homesick, and I would show the occupational therapist how more than ready I was to be released.  I was getting to the bathroom with little assistance, and I had emerged with my personality intact.  What more could a person want after having their melon muddled with?

Tomorrow couldn’t come soon enough, and as my husband carefully washed my hair that night before bed I realized this was just the first phase of my journey.  The second would come tomorrow, and then I would see how I would get along with life outside.

  

April 8: Paranoia will Destroy Ya

Good news everyone!  We have cell redundancy!  This is the best news I’ve had in a long time.

But first, let me share yet another unexpected recovery surprise.  I was having a particularly difficult time with a certain song the last time I had a church gig- really just one measure. I was getting frustrated and being hard on myself, as usual,  and I was also distracted by moving automated stage lights which were really messing further with my concentration. It seemed that everything was conspiring against me at that specific part of the song, but I was determined to not use my brain surgery as the reason I was having a tough time – which I could have, and everyone would have understood but I would have none of it (I’m still in that grey area of not wanting to be pitied but also needing people to acknowledge what I went through). So I tried a few strategies, and finally one of them worked. I quietly congratulated myself on this small victory, and got through the rest of the weekend.

I shared this with my social worker, and she explained a concept called cell redundancy. We only use 10% of our brain supposedly, and the rest is unused and dormant –  like spare parts, or extra soldiers that get called in when the battle starts to to get heavy. This is how damaged areas eventually get help, and makes up for the inability of the brain cells to regenerate.  It also explains why in the following days, I felt a lot stronger and a lot more creative than I had in months.  All is not lost, your majesty!

Every time I challenge my brain and struggle through something, it makes me stronger, she explained further. She also said music is probably the best way to get my brain healing, as it excites so many neural pathways at the same time, and by continuing to rise to any challenges that come up, the injured areas reroute just a little faster. Way to go extra brain soldiers! I guess there’s hope for those injured areas after all.

But once again, when things start to look up, life throws rocks at the new windows of happy you just had installed.  A very good friend of mine had a stroke a week ago, and as a result his left side is paralyzed.  And a few days later, my 100-year-old grandfather passed away.  So let’s just say I’m in the middle of all sorts of ongoing logistical planning, and getting a little overwhelmed at times, especially when everyone involved in these two events decides to contact me at the same time.  I’ve decided to not get stressed out, stay calm and focused, and get help when I need it which has become somewhat easier for me now that I have successfully swallowed my pride. And I got brain soldiers now, damnit! 

I visited my friend two days after his stroke, as I had been in Charlevoix when I got the news. They had him in the ICU, two rooms away from where I woke up after surgery.  I have to admit, it was an odd feeling seeing things from the other side of the glass.  I had a desire to go in the room I had been in, just so I could fill in the missing things from my memory.  But I was able to do that in my friend’s room successfully, noting where the vitals machinery was located and observing what objects were on the counter.  I realized it was helping to give me a sense of closure, as was admitting that I still had ongoing issues with his father, who asked if things were back to normal for me.

The second time I came to see him, he had finally ended up in the neuro ward.  Ah, I thought, my old stomping grounds. I had actually entertained the idea of visiting this floor a few weeks ago. I wasn’t quite sure what my reasoning was at the time but I had felt strongly about seeing it again. So   I trudged over to the South Tower elevators making some minor observations as I went along.  The location was quite a distance from the main towers, and the elevator doors were of shiny brass like the Fisher Building’s. How fancy!  I was walking the same path my family and friends had walked when they visited me, which also gave me a strange sense of …completion, maybe?  I hate to overuse the word closure, but I guess that’s the most appropriate word for what I was feeling.

I braced myself for any unexpected emotions. I continued to make a list of observations as I walked to his room, hoping his Starbucks vente dark roast wasn’t getting too cold.

The Harold and Marian Poling Neuroscience Center was HUGE.  I had no idea how big it was when I was there.  I passed three nurse stations before I finally found him in the rehab section, noting the simulated wood floor as I entered his spacious living quarters ( Dang, I didn’t have a simulated wood floor, I thought with mock jealousy).  I stayed there for maybe an hour or so, offering any helpful advice that I felt was appropriate.  Our brain traumas were different, but he would likely go through similar emotional things.  I learned that much from my group therapy.  So I left it open for him to ask me anything whenever he was ready. I thought I was probably the best qualified to help him through the ups and downs of recovery but I didn’t want to push my experiences and insights on him right away. He was still in the initial stages of shock and adjustment after all.  When and if he had any questions, I would be there for him. 

As other visitors came, I decided it was time to leave as I felt people would be coming soon after their work day.  I thought maybe I would try and find my old room, and found that I couldn’t remember where it was to save my life.  I noticed some signage indicating different areas. Progressive recovery maybe?  Where would they have put me in this giant place of sections upon sections, where none of the rooms were standard and they all looked slightly different from each other?

I gave up finally and walked out, and I passed the signage that had so impressed me when I had first wheeled past it in a gurney 6 months ago. My memory was confirmed:  Metallic lettering on a wooden panel wall that said “Harold & Marian Poling Neuroscience Center” and underneath was a bulleted list of the various brain traumas that were treated there:  Stroke, Parkinson’s disease, multiple sclerosis, tumors, spinal cord injuries, shoe department, women’s lingerie, etc.  It didn’t look as impressive in the afternoon light as I had originally thought, and the waiting room didn’t either. Both looked very late 90’s, in fact.  I hadn’t noticed how beat up the round coffee table was, and where the vase of beautiful salmon orange roses had been was now a sad pot of withering yellow mums.  

A glass wall overlooked the pediatric garden. I walked closer and touched it.  I hadn’t noticed it before and it was also slightly disappointing to look at again.  Maybe I actually had to be down there to find the whimsical Dr. Seuss area that had once delighted me.  I looked down at the spot where my husband and I had been, and I had rested against him as we calmly steeled ourselves for the unknown.  I got a little sad then.  It was definitely time to leave.

How unexpected the paths of life. But, hey – we have cell redundancy!  And next time I come back to this floor, things will be different as I will be fully focused on my friend’s recovery and not on reliving past traumas.  Even now I’m reading an update that he’s doing better and that his physical therapy went well.  

So take that, life!  You ain’t got me beat yet!

I woke up again just before dinner, happy to see my husband was sitting in the chair in front of me. They had returned me to my old room, which I was very pleased about.  My night nurse came in and introduced himself, and like all the other nurses I’d come to respect on that floor, he assured us in a touching, sincere voice that I would be taken care of in the best possible way and asked  if there was anything we needed at the moment.  I held my glasses up to my face to see what he looked – boyish face, brown, wavy hair, kind of stocky. Another male nurse! And such nice manners.  Female nurses seemed to be the minority there, and I wondered why. That question was soon answered.

“Well, if you’ll excuse me, then – I have to go and take care of a patient who’s trying to climb out of his bed,”  he said in a cheery “typical day on the neuroscience floor” kind of way.  

“It isn’t that guy with the the police in his room and all those people in the hallway is it?” my husband asked.

“Yeah, that’s him. Gunshot wound.” And he left, leaving us to speculate the location of the injury.  Can someone actually still be alive and trying to get out of his bed after that kind of trauma?  Apparently the answer was yes.

My husband said he had seen quite the crowd in the hallway and also two very large, possibly seven foot tall police officers entering one of the rooms.  Gang violence?  Drug related crime? Convenience store robbery gone awry? So that’s why there were so many male nurses. I realized  that brain trauma patients can be unpredictable in their behavior and occasionally violent. Men or women, someone needed to be strong enough to take on a person who wasn’t in control of their body. Hence, more male nurses  who looked like they lifted weights regularly. 

Later that night, my comparison to a madhouse was confirmed.  I heard a commotion in the hallway and loud conversation and swearing.  Someone named Rita was awake and getting her late night exercise and verbally abusing the nurses around her.  A tired male voice said “Come on, Rita – you don’t have to talk to us that way.  We just want to get you walking.” Followed by incoherent angry words from Rita.  And was that something being thrown?  As was often the case here, I found myself wide awake late at night, miles away from the shores of slumber.  I had nothing to do but wait until I fell asleep again.  That’s when my male nurse du nuit came in to check on me.

He called out quietly as he approached, making sure I was awake.  He told me he was there to give me my pain medication, my anti-seizure medication and my, ahem, stool softener which prepared me for that miraculous day when I could go No. 2.  Until then, the pooping pills were given to me regularly even though I was currently feeling nothing in that area of my body.

He administered the first two intravenously, and I cried out as one of them burned entering my vein.  It was the pesky anti-seizure meds, which stung badly.  The pain shot through my arm and the left half of my chest, as well as my groin mysteriously enough. Concerned, he took a closer look at my IV port.  It was pretty mangled by this time, and he told me he’d make some adjustments and see if that helped things.  He added that eventually I would take my pain and anti-seizure meds orally, and they were administering them intravenously because they worked faster that way – ten minutes as opposed to 45 minutes by pill.  It was a standard precaution until the danger of seizures was past.  

While he was working on re-taping my IV, I decided to make conversation. We were clearly having one of those made for TV moments between a nurse and their patient. And I felt like I should say something appreciative.  

Carefully, delicately,  I formed the sentence on the left side of my brain.

“You’re great, you know that?” I blurted.  

He seemed surprised and taken aback.  “That’s a very nice thing to say.  Thank you.”   Sheesh, does no one thank these people? Emboldened by his response, I continued.

“Did anyone ever tell you you look like the hero from Guardians of the Galaxy?” Oh, my.  I was quite the Chatty Cathy.  “Have you seen it?”

“No, I haven’t.  Is it good?”

“Yes.  Fantastic!  You should see it.”  I wanted to elaborate further, but I couldn’t quite remember the character’s name even though I’d seen it twice.  Images from the movie flashed briefly in my memory.  Ok.  No more talking. 

“Wow, no one has ever compared me to someone in a movie before.  Thank you.” Now he was just humoring me, the patient on pain meds who is babbling nonsense at some insane hour of night.  I think I also asked him if he had managed to keep that patient in his bed from earlier.  I don’t remember if he answered.

Not long after he left, I buzzed for bathroom assistance.  As I was in there,  I heard a patient yelling “Come on!” in a loud, insistent voice, over and over and over, with about a five second pause between each “Come on!”.  I must have had a “WTF?” look on my face when I came out, as the female nurse who had assisted me said, “Oh, it’s ok, that patient has a sitter and he’ll be fine.”  

I was escorted back to bed, wondering what a “sitter” actually was, and later that morning as the sun was coming up, I overheard my male nurse instructing the next person taking over.  He referred to me by bed number, which I found kind of cold and clinical.  “1142 just had a craniotomy to remove a benign meningioma.  She has a little trouble speaking and needs assistance to the bathroom.  You’ll need to give her the following medications…”  Just doing his job, I thought.  Keeping things efficient.

I remembered the name of the hero from Guardians of the Galaxy: “Star-Lord” was what his dying mother had called him.  Chuckling, I imagined the hospital intercom announcing, “Nurse Star-Lord, you’re needed in Room 8451! Bed 1142 is wondering if you connect emotionally with your patients or if they’re just numbers to you.”

That’s a thing about the hospital – you never get used to strangers talking about you just outside your door, where they think you can’t hear them.  You get just a little paranoid – and wonder if the meaningful moment you thought you just had with your caretaker really happened.  If it was just my imagination, running away with me.

Sigh.  Please let this be my last day here!