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!

Intermission

I had intended to offer a brief discussion on meningiomas, and more details on the nature of my speech problems (which I fear might be getting a little worse again) but nothing is going as planned, as usual.  I find myself experiencing events that are more compelling than showing my readers the finer details of  Broca’s Area and Wernicke’s aphasia.  Perhaps another time.

Allow me to explain.  My 100-year-old grandfather is dying.

My mother, who is surprisingly adept at texting for someone her age, explained the situation in the broken, grammatically incorrect way that only modern texting can offer:  He had a wee heart attack a couple of days ago while sleeping. He was at the nursing home at the time and after he was unresponsive, he was taken to the hospital.  After a heart doctor offered surgical options, it was decided that he probably wouldn’t survive any surgery and that the best option would be to move him to hospice and keep him as comfortable as possible.  

He’s just so tired, she said.  His heartbeat is slowing down. At first, the thought of death frightened him, but my mother thinks he’s finally getting to where he just wants to rest.  And that brought me back to my own thoughts about dying when we didn’t know if my tumor was malignant or benign.

At the time, I decided I had been ready.  If it’s cancer then let my last days on earth be peaceful and unencumbered by petty things like grudges or ambitions to be a rock star.  It was important, I decided, to just experience the richness of my relationships and seek some kind of profound connection with the Universe and contribute in a meaningful way to the world community.  

Months later and anti-seizure medication free, I’m back to being petrified about dying and worrying about things like what outfit to wear during the next Bosch tour of my workplace. Have I changed so little after my experience?  It’s kind of interesting how my head changed so much towards something so profound, and that I can actually tell the difference.

I’ve read that there are often personality changes after brain trauma, depending on where the ruckus happened.  Maybe mine weren’t immediate.  I’m finding that I notice little things that are different about me,  but maybe I’m reading too much into these differences. That’s what I do now.  Ever on the alert for abnormalities, changes in the current.  Interruptions in the flow.  

Let me leave you with an experience I had last week that I probably should have prepared for.  I had organized an event for a small group of co-workers at a very hip and trendy restaurant near my workplace. I hadn’t planned on attending, but I thought I’d just pop in at the beginning to make sure everyone was comfortable and the party was on its way.  I did very well talking to people I hadn’t seen in a while, exchanging brief pleasantries and working the room.  Then it gradually got very noisy.  I had been fatigued and tired on my walk there, which already broke my personal rule of not being rested for loud and crowded places. Gradually it became the familiar struggle of being unable to express the thoughts in my head into words and sentences.  At one point I asked someone to speak for me as I just couldn’t do it. It was quite exhausting, and quite frustrating.

Fortunately the CEO arrived and ended up making all the crucial decisions, with some input from me about whether to get wine or order off the craft cocktail menu. “Oh, let them order from the menu,” I answered confidently, despite the onslaught of noise around me. “It’s more of an experience that way!”  Oh, the bravado. After he assured me all was well, I snuck off quietly amidst laughter and merriment and out into the safe quiet of the street.

I find myself in better shape as I end this post.  I’m on an upswing, no doubt a result of lots of sleeping and rest over the long weekend, despite playing my church gig and seeing family. I’ll need a lot of mental energy to get the next post out, but I will try to get it out in a timely manner.  I haven’t even begun to talk about the things I’ve learned recently from My Stroke of Insight

‘Til next time!