This is the wiring diagram of a human brain. It helps me to understand the complexities of the brain and of my recoveries.
I used to describe the recovery from a seizure as a series of awakenings, as an ongoing experience that rolls out before you and continues to grow and expand as my brain reconnects itself and comes back online. But it is more than that. It is part physical, part psychological, and yes, part spiritual.
I would describe it as an expanding experience that includes a higher level of cognition which pushes beyond where my experiential limits used to be. It is as if, once opened, the pathways that were at once limited become limitless – beyond where the eye could at one time see.
I know this is as much physical as it is metaphysical. I realize much of this is a function of my brain repairing itself and my neurons re-knitting the old pathways, but I cannot help but drop the limiting thoughts that used to define me, to peek into the void beyond the horizon.
Physically, I understand that the myelin that sheathed my nerves was probably weakened during my seven weeks of radiation. [Myelin is the insulating covering of protein and fatty substances that protects the nerves of the brain, spinal cord and body. Unlike the insulation of a power cord, it is not designed to prevent electrical shocks as much as it is to hold the electrical impulses within the neurons, enabling them to transmit signals more quickly and efficiently along the neural network of cells.]
It is one reason the doctors and I think I had my seizure in the first place. Seven weeks of radiation has a way of wearing away the myelin, leaving the nerves a bit raw.
As the myelin rebuilds, the synapses in the brain become stronger, the neurons engage and mesh together, recreating the network and the memories that I remember having. I am sure a certain level of neuroplasticity comes into play as the brain takes into account what is going on around it, enhancing the most relevant areas first, even letting go of some areas it deems less important.
In a way, I get a new brain. As this happens, it feels as if I am witnessing my memory expand at a rapid pace. The result is a hyper fast experience of watching my mind expand, not just rebuilding its old self, but often going beyond where it was, pushing past the old boundaries, and sometimes even forgetting or ignoring where they were.
In terrestrial terms, when I first left the hospital I had a very limited awareness of where I was. We often speak of being present – well, this was it. My focus was on the pavement immediately in front of my feet. I was not worried about what happened yesterday or the day before. I was not worried about what was coming up. The past and the future were not even concepts I could grasp. Mine was a very immediate and present-moment experience, all day, every day.
As my memories and my cognition came back online, I became aware of the entire block in front of me. I began to realize at some point I would reach the end of the block, and with it the concept of the future came into being. With that concept the street names beyond the block I was on became real.
I quickly learned if I went out on a ramble I would easily become lost, as in 100 feet out, I would lose my sense of direction and have to stop for a few minutes to regain my bearings. If instead I followed a set path, i.e., walking down a street I was familiar without turning down a side street, the streets in front and behind me would start to scroll as if a map was being unrolled with every step I took. Even the side streets would start to roll out and expand in every direction.
It was a fascinating experience to watch as my brain reconnected itself. I would have sudden realizations of the stores that were on this block and the next. I would not always remember their names, but I would often remember the smell of a bakery, the energy and the bustle of a coffee shop, or the emotional connection to a bookstore. The memories were not just physical, but emotional as well.
As the grid around me expanded from one block to three and to ten, I found myself having to stop on a corner, standing still and staring blankly at a sign or a tree, as my awareness and cognitive abilities caught up with my physical location and my brain’s growing network.
When I finally made it to the Hudson River – perhaps six blocks away – I practiced a walking meditation as I took in the smell of salt in the air. I removed my shoes to feel the cold planks of the boardwalk beneath my feet. I kept to the edge of the path to feel the reeds against my legs; it was the sensations I was after.
As those came in, I begin to smell the more subtle scents along the path, I could hear the birds singing, I could even hear the wavelets along the banks of the river. I became aware of the individual sounds that make up that wonderful tapestry of white noise that we all live in.
Perhaps this is why I teach a meditation that enables my students to embrace the world around them; to acknowledge and appreciate the individual sights and sounds that make up their world without feeling the need to attach themselves to each one.
About this time I also looked across the river to see the trees and the sky and the clouds that are beyond the walls of Manhattan. I can see where the Hudson flows out into the ocean and my mind quickly puts it all into place, that yes, there is a big beautiful world out there.
This is also the moment where I let go and allow my mind to roam, not stopping it at the edges where my brain says “real” or “not real”, or separating the “physical” from the “metaphysical.” Instead I enter a playground where I allow the sensations from each to overlap.
I begin to remember what happened during my seizure. I remember feeling the overload. I remember my brain shutting down. I remember my body closing off, and I remember giving myself up to the kindness of strangers, unable to move or to respond. And it is about this time that I am reassured of the kindness of human nature. Where not once has my experience tuned into the torture scenes so often found in the movies we are forced to endure.
Instead, people have always reached out, helped, and done so with kindness. It is about this time that I find myself smiling, knowing that I am on the right path.
https://secureservercdn.net/188.8.131.52/837.431.myftpupload.com/wp-content/uploads/2015/10/wiring-diagram-human-brain-e1444479744235.jpg?time=1629384437250284jeffcannon/wp-content/uploads/2018/12/JeffCannonLogo.pngjeffcannon2015-10-10 08:10:382020-04-29 16:38:54Q+A - What Does It Feel Like When The Brain Reboots? Seizure Pt II
This past Saturday I practiced yoga for the first time in two weeks – it helped align my muscles.
Yesterday morning I enjoyed a walking meditation along the Hudson River – it helped align my mind.
Yes, the birds do sing along the Hudson. Yes there are quiet places in the middle of the world’s largest metropolis. It simply depends on where you decide to place your attention and what you decide to focus your attention on.
This post is a story of what you can do when you place your attention on a single point of focus, and where that focus can take you.
Both practices, the yoga and the walking meditation, were the first time I was able to abide them since I had a rather massive seizure on September 20th. It knocked me down and took me out for several weeks. There was no convulsions. There was a simple shutdown as my brain experienced an overload and quietly rebooted itself.
In between these events, the September seizure and my walking meditation, I have floated in a muddle of missed connections and forgotten streets, of thoughts that have gone unexpressed, and of the constant reminder that the human experience is a glorious thing to behold.
Throughout it all, I knew the information was in there, I was just unable to access it. The process of which has been a process of breathing and patience, of stopping in silence, interrupted by flashes of knowledge as my brain awakened itself.
It has been a path of following the tried and true, interrupted by frantic thoughts and the need to quiet my mind, of getting lost in a city in a well laid-out grid, of waiting on random corners as my neurons settled down, of not moving until my sense of space and direction returned to me. Of getting lost in time on a park bench, blankly contemplating a leaf in empty silence until something sparked a memory in the back of my brain and stirred my mind to life.
On September 20th, the last coherent text I sent out was at 4:39 in the afternoon. After that my wife received a call from a stranger at 6:49, telling her I was sitting in our lobby, unresponsive and not moving. Unseen by either of them, the electrical pulses in my brain had quietly lapsed as it seized.
During this time, my brain was reducing the input, shutting down my sight and my hearing as it went through its own reboot. My sight closed in on me, reducing my field of vision to a very narrow band of light. My hearing began to fail as my brain, the good computer that it is, shut off the sounds that overwhelmed it a short while before. My fingers tingled and went numb as my sole focus was to painstakingly scroll through my phone to my wife’s number in the hopes that I could find someone to dial it before everything went dark.
What usually takes seconds took me well over an hour that afternoon – all with the thought of preparing for the chance passing of a stranger.
If I could have spoken intelligibly, I knew what I would have said, but the words and thoughts were trapped deep in my mind at this point, unable to be expressed. So I sat down on the stone steps of the lobby, resigned to setting things up; remembering, forgetting, taking each step one at a time before forgetting and having to reverse direction once again, reminding myself what it was I was trying to do – prep my phone so that I could hand it to a stranger and point to the dial button.
This was how I spent the seventy minutes between those two points of contact.
I remember the conversation going on inside my head. One voice saying “this could take for hours,” the other voice saying, “Well, it’s not like we’re going anywhere anytime soon, so just breathe and focus, and move as smoothly as you can so you don’t make any mistakes.”
It was a meditation of remembering, of forgetting, of focusing and of letting go.
As luck would have it I saw movement somewhere in the lobby. I tried to speak and showed him the screen of my phone. I may have said the word “wife” but I am not sure if that is what made it out.
He called her from his phone before realizing his phone was a stranger’s number to her, and he pushed the send button on mine.
In minutes I began to hear the wail of sirens as the ambulance raced my wife for the lobby to take me to the Emergency Room at NYU.
Collapse & Recovery
My seizures are somewhat unique in a way. They are the result of 9 brain surgeries that have removed more than 20 tumors in as many years, as well as a few rounds of radiation that have left my brain swollen and angry.
It is not that I lose consciousness of what was going on around me. I am actually hyper-aware of the input coming in – I am just unable to process it into anything meaningful. I can walk up to a door, I know that on the other side of this door is my destination, but I am unable to understand how the door works. I can see the key in my hand, but I have no idea how to fit it into the keyhole, let alone to turn it in order to open the door.
In this case I was able to make it into the lobby of our building, but that was about as far as I could get. So, there I sat, in a stupor, patiently abiding my breath as I gave myself up to the actions of those around me, trusting they would do the right thing.
In so many ways these seizures remind me of the inherent kindness and goodness that is within us all. It would have been so easy for someone to grab my wallet, my mobile, or to shuffle me off to some nightmare scenario that screenwriters are so quick to turn into a blockbuster. But this has never happened.
Not once in all my experiences has anyone ever done anything other than to help, to assist, to see me through. For that I am eternally grateful. I am also eternally optimistic that the human experience is not one based on hate or anger or fear, but on love and compassion and understanding. That it is within each of us to reach out and lift up those who are in need, as has happened to me again and again and again.
This seizure followed a fairly predictable pattern. I was running a number errands and had forgotten to take my Keppra – an anti-seizure drug. I dehydrated myself and skipped lunch which lowered my electrolytes and blood sugar, in order to get one more errand done. I put myself in what I call the danger zone, by adding level of stress to the whole situation, until I ran into a market that was loud and crowded and bright with more food choices than you could ever hope to see, and that is what flipped the switch. It over-stimulated my senses with brighter lights and jostling people and more noise than I could handle; and that is when my brain just said enough.
When then the seizure starts, it comes on pretty quickly. The signs give me perhaps a thirty or forty minute warning. It is like watching my brain shut down the inputs so that it can reboot. My field of vision quickly diminishes to create a tunnel. I begin to see flashing lights. My hearing begins to dim, and I get a numbness and tingling in my fingers and toes.
On this occasion I determined I had enough time to get home.
As I focused on the streets I knew it would not be long until my speech become unintelligible. I also knew I would start forgetting how to make the connections we all take for granted – like how to use a key in a door, how to take an elevator upstairs, or how to make a cell phone work. It is the funny thing about my seizures, I conceptually understand what something does, I simply cannot for the life of me make the connections that are necessary to make it work.
It’s kind of like being a car without a driver. The engine is idles just fine, but it’s not going anywhere without someone turning the wheel or stepping on the gas, let alone being ready to step on the brake.
In some cases if I catch it in time, I can stop the seizure by taking a cold shower to lower my body temperature, drinking an electrolyte replacement designed for marathoners called Skratch, or meditating to quiet down my brain’s activity. I can even nap for a few hours, or collapse into a deep unmoving sleep, until things seem to return to a normal path of recovery.
Needless to say, this time I missed that window of opportunity.
Instead, I felt the growing disassociation with the world as it shrunk in around me as I headed home, key in hand. I remember putting myself on as direct a path as possible. It was only a few blocks to our loft, not even ten minutes, but by the time I got to our front door, I wasn’t sure how to use the key that was in my hand in the lock.
I knew what was going on, so I stopped and breathed and settled things down. I focused on my breath until a connection was pulled together and slowly slid the key in, turning it, and opening the door.
In front of me was the steel door of the elevator that would take me to our loft. I knew what the elevator was for, but by this time I could not sync up the concept of the elevator with the idea of how to operate it [i.e., put the key in the lock, turn the key and push the button for the right floor].
I also somehow knew having my wife find me collapsed in the apartment would be less desirable than accosting someone in the lobby and getting them to call her. Don’t ask me how, but this is the way my brain works in times like these.
So I sat inside the lobby with my keys in my hand and waited. My vision continued to degrade into a very narrow band of light, into which I scrolled my phone one step at a time. I remember thinking to myself, “this is just like yoga, one movement for each breath. Slow and steady,” with the idea that if I could set everything up, if someone came in, if I could catch their attention, I could just push send and give them the phone.
As you already know, a neighbor eventually did come in. I managed to garble out the idea for him to use my phone to call my wife. How he understood I have no idea, but he made the call.
Alex, I thank you for that.
06:49 – Laura sent a text that she was on her way down and calling 911
Into the ER at NYU
I remember sitting there, sweating and listening to the sirens as they approached. Alex stayed with me until the ambulance arrived. I acutely aware of my head hanging down as I focused on my breath. I was aware of everything going on around me, without placing too much attention on any one detail. It was as if my brain was absorbing the events in a very distracted way. It was detached, but taking it all in, as if floating just beneath the surface of a lagoon, watching what was going on above the surface without being able to interact with it; calm and serene.
I could not see the EMT when they came into the lobby, but remember hearing them. I was trying to say something, but realized whatever I was saying made no sense. I knew what I wanted to say, but could not get the words out, so I just let it go and let them handle the situation.
I could feel them moving me this way and that, strapping me onto a stretcher and loading me out the door. It occurred to me that this was what Stephen Hawkins must feel like. Able to take in the world around him, observing and noting from afar, without the ability to interact.
Laura climbed into the ambulance and told them NYU, and off we went. The ride itself was a benign trip through which I closed my eyes. I felt safe, knowing that from this point on, everything would be fine.
When I opened my eyes, it was to the noises and lights of the ER. We had arrived at the NYU Medical Center where the doctors have had me on file for decades. The orderlies were taking vitals and placing electrodes on my chest and head. The nurses were securing IVs into my arms. There was nothing for me to do but lie there and breathe. Everything that could be managed was being managed. I was stable.
When I woke, it was to the flashlight of a nurse checking the dilation of my eyes. It wasn’t great, but they would get better.
The key difference between my seizures and the seizures caused by something like epilepsy, is that in my case, it is all about the buildup. I hover in the yellow-zone for hours until something pushes me over the edge. I get over-stimulated by some trigger, my brain gets overloaded and simply says enough as it starts to shutdown.
After the seizure occurs, the event is over. There are no follow-up seizures. It’s a one-time event before my brain goes into repair mode, busying itself as it re-establishes the neural connections it once mapped my life to. There are no cascading of electrical impulses where the brain continues to misfire. I am not sent down into a series of seizure after seizure after seizure. And yes, I consider myself extremely lucky in this sense.
It took a day or two of observation for the doctors to confirm that my brain’s activity had normalized, after which they saw little reason to keep me. In effect, releasing me on my own recognizance.
The Road Back
What I have learned over the various surgeries and seizures that I have had, is that the physical brain is a truly remarkable organ. Not only does it have millions of connections that not only keep the body alive, but it reorders those connections every second of every day in an infinite number of combinations to create the thoughts and dreams we call the mind.
It also reprioritizes the way in which those connections are put together, in order to better respond to the world around us. A London taxi driver’s hypocampus, the area responsible for mapping and directions is heavier and more deeply folded than yours or mine. It is a survival skill they need having to drive through the more than 10,000 streets of London that have been built up over the past several thousand years – few of which follow any kind of a grid pattern.
I was reminded of this as I began to look out the window of our apartment at the streets of Soho in Manhattan. This is the haphazard area that was laid down before the grid on Manhattan was established. No right angles. No first, second, third or fourth. Instead it is a mishmash of Spring and Mercer, Prince and Wooster, it was this pattern that I needed to access before I could leave the loft.
The amazing part of relearning the streets is that the harder I tried to picture them, the more difficult it was to do so. Instead, the more I relaxed, that more I let go, the quicker the image of the streets would come to me.
On the one day I went out thinking I would wander around the reacquaint myself with the neighborhood, I got lost within half a block. I could not remember what was North or South, East or West, uptown or downtown. I had to stop against a building and breathe for several minutes until I slowly realized where I was, and more important, where our loft was.
That was enough to send me back home for a very long nap.
On my second trip out, I thought of taking a different approach. I would take a left out of the apartment and stick to one street. As I walked down the street I read the signs as they begin to spark my memory. I could feel my brain make the familiar connections that were already there.
After several days of this I begin to visualize a grid around me. It was only a few blocks, but I begin to remember the names of the streets several blocks away. I even began to see the stores on the next block as if they were appearing out of some recess in my memory.
In between, there were moments of standing on a corner for minutes on end, unwilling to go any further until my brain could catch up with where I was. I was taking baby steps, allowing my brain to familiarize itself with the neural network it had slowly established over decades.
As my brain mapped the streets of the city, I could feel other aspects of my mind coming online. I learned it helped to put everything in a very specific place, and to not take any shortcuts. Life became easier when I was able to create familiar patterns that I could return to. As these patterns established themselves within my head, I could expand upon them more easily.
The moment I took a shortcut, was the moment I would get lost or confused, and have to take several steps backwards before starting over.
My conversation begin to get tighter. My writing became crisper. I could even remember the focus of a paragraph from the time I started and finished writing it. Oh, and autocorrect no longer confuses me by misspelling my words.
/wp-content/uploads/2018/12/JeffCannonLogo.png00jeffcannon/wp-content/uploads/2018/12/JeffCannonLogo.pngjeffcannon2015-10-07 12:47:042020-04-29 16:38:54Meditations & Seizures to Recovery - Seizure Pt I