Yesterday marked exactly 10 years to the day, when I had that sudden event known as the Brain Injury.
I cooked myself a big Sunday breakfast on a Wednesday morning, ate it, sang,
“Happy Birthday to ME.” {Three times}.
Clapped myself, thanked God and then drank a cup of tea.
Next week is the last publication of this newsletter and the end of that decade of my life. As I wrap up, please allow me to share my experiences and thoughts about The Traveler, My Present Neurosurgeon and ME.
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The Traveler
There was a time I told many a person about my wish to get a particular food. I would be told how easily the person got it and where I could go to get it. All with jollies and a smile.
The supply places were a far journey by car. I do not drive, nor do I have a car. A fact a lot of mobile people seem to miss.
Getting to any of those places was a challenge for me. They were out of the way and too far a distance for me to comfortably maneuver via public transportation without feeling overwhelmed. So, I simply gave up on ever getting that particular food.
Then one day in a face-to-face conversation with another, The Traveler overheard me say something else and simply ‘got’ my unspoken words and challenges. The next weekend The Traveler picked me up and took me to get my supply. Not because The Traveler was heading that way, far from it. The Traveler went out of her way to take me to the place to get that food I wanted.
In those days, we had not known each other too well, yet The Traveler still showed me kindness and helpfulness.
We spent the day together, laughed and did our things. I had a great time in her company, and I found a friend to keep.
Now I look forward to not-so-much-our-doing-errands together, but the chance to hang out with The Traveler. It is always time filled with spontaneous laughing on our jaunts.
Thank you, The Traveler, for your magnetic presence and observant thoughtfulness.
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My Present Neurosurgeon
He was the only neurosurgeon who asked me anything about the actual Brain Injury, My Saving Neurosurgeon’s actions, or the type of shunt I had.
I did not even know that there were different types of shunts to be had.
Often arrogance abounded and know-it-all types ruled my medical experiences, with no respect for anything or even interest in the work and efforts of another.
After all the information was discussed, My Present Neurosurgeon genuinely said to me,
“I am sorry that happened to you.”
I could never forget those words. They were humane, kind, and represented an acknowledgement of all the hardships I endured while trying to keep myself alive.
My Present Neurosurgeon showed interest in my situation, in me as a person, respect for the people who saved my life, and in the work of My Saving Neurosurgeon.
He had me contact My Saving Neurosurgeon to find out what type of shunt I had. Apparently, there are also programmable shunts now.
His expertise and words won my loyalty. How could I not want this person to be my neurosurgeon going forward?
It took me so long to find good doctors, and when I did, I held onto them for dear life. They had my respect.
My Present Neurosurgeon specializes in AVMs AND Acoustic Neuromas. One doctor, looking after my WHOLE HEAD. Oh YAY!
His expertise in AVMs/Acoustic Neuromas + “I am sorry that happened to you” = my trust and respect.
And as a bonus, I like his Nurse too. The two of them make a good team, and one I want to help ME.
In a weird way my timing was good, because the last thing I wanted in me was a programmable anything. That would greatly affect my being able to leave the entire Brain Injury adventure in the past.
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ME
In the first 3 months of the Brain Injury, when I was physically here but not mentally and living with My Hero Cousin, I had some weird dreams which I remember.
One where I was living in the sea and under a jetty with a brother I did not have. In another, I was the roots of a large tree, living in darkness in the earth below and where I could inherently ‘feel’ the viscosity and dampness of the soil all around me. In another, I was living in a castle surrounded by fully armored Knights and all I could hear was the loud echo of the tin armor as they climbed up and down a small spiral staircase with loudly echoing walls.
The dreams were very surreal and were not only one-timers. They were reoccurring and continuous, as if I was reading 3 different books simultaneously.
I am amazed that I even remembered them and, in such detail, too.
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I was told that in those early days, I apparently ‘hated’ My Father and did not want him near to me, to even sit in the same room, and definitely not to touch me. Apparently, I was vocally nasty to him too.
Another early behavior of mine was to sit in a stationary chair as I rocked my upper body back and forth and said the ‘F word’ aloud to myself.
All times which eventually phased out. Note well, much patience was required.
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At Rehab they had boxes of tissues all over the place. And at that time, ME, like my fellow Brain Injured Persons, had our noses running at a moment’s notice for no apparent reason. So, we simply grabbed one of those tissues.
Now I look back and realize that I did not have to deal with any seasonal allergies during those times. I did not feel anything expect tired and the need to blow my nose sometimes, as I focused fully on breathing, walking and everything connected to my brain.
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I have reached out for help in crisis moments, and it has been a mixed bag. It all depended on the self-confidence of the other person and their willingness to help ME.
The other person’s reactions could range from ‘me not being human’ to them feeling ‘threatened by another female’. Who really knew. In the end, I was left alone to handle my immediate issue, and that was when either God stepped in with a miracle, or a surreal calm for ME.
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I celebrated every-single milestone. I either clapped myself or danced. Everything from walking a few feet in a straight line, to remembering something from 2 minutes ago. I really did not care where I was when I clapped or did my happy dance. I have done it in exam rooms, imaging rooms, pharmacies, libraries, or a small store.
At times too, I could be heard saying,
“If you don’t laugh, you will cry. So, you might as well laugh.”
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It would take so much out of me to go shopping that I would simply get ‘whatever nearest’ on my list. I could not shop around or check back. Between that overwhelming feeling, my injured brain, my body doing interesting things, and the anxiety feelings, I regularly wanted ‘immediately out’ of wherever I was.
In the earlier days there were no supermarket delivery services and My Father helped ME. Eventually (and before the pandemic of 2020), supermarket delivery service started and that was how I got all my food. Then when 2020 hit, everyone was now living like ME, and it very much helped that I was already accustomed to, and recognized as a regular customer, in both my before and after, 2020 towns.
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I do not read any of my medical reports. I do not look at the CDs or films. I am happy in my ignorance. It allows me to remain in the moment and to take everything 1 day at a time.
Each morning I open my eyes, smile, sit up in my bed and say,
“God thank you.”
And it is another day for me to be.
Yes, I still have balance issues and can fall at home if I turn too suddenly. Sometimes when I move backwards, my body refuses to stop until it falls on something. Usually, this fun happens in my bedroom because it is here, I am busy doing tasks without taking the proper time to do the Mississippi Count to 10 before I change direction or altitude. I always laugh at myself and make sarcastic comments too.
When I am in public, or at someone’s house, none of this happens and I am very careful to manage myself. No-one could guess I am the one who had the Brain Injury because I completely rock the Poker Face and the Poker Body.
At times I had been accused of being “childish”, but I think the word really needed was ‘curious’. That I am, curious. I maintained the ‘always at the beginning’ mentality and the ‘always learning’ characteristics. I know those traits are big reasons that got ME through the re-learning and new-learning parts of this wild ride. It was the curious trait which encouraged me to keep moving forward and never allowed me to stop and settle, until I got to where I was supposed to be.
That curious nature was instrumental in keeping me humble and propelling me forward.
I try to fix many things myself and usually by the time I ask another something, I have already tried many things, and really am asking a genuine question. It is help I need, not an instruction sheet. I am frustrated, my problem remains unsolved, and I need your help, not condescending remarks.
Some people may mean well and try to encourage me to be the same person I was before the Brain Injury. Instead, their ‘encouragement’ comes across as ‘pushing me’. Behavior I want to avoid because it leads me to feeling overwhelmed.
Please understand that I have changed and some of those former abilities, are not coming back. It took me a very long time to accept that fact. So continually reminding ME of things I used to do or be, but no more, sets ME up for failure and frustration.
I have finally accepted things; my request is that you do too.
Please stop pushing me. Keep in mind, the pace is mine, not yours.
If you see me appearing to standstill, take note that I am simply resting as I quietly re-gain my strength, or am slowly trying to figure-out a lost ability. I am not leaning on you, or anyone. I am simply present and calmly doing some personal work quietly.
I sometimes need brief moments of alone time, but I like to know that others are around. Some may call me moody, but it is simply that my introverted and empathic urges need some moments to catch themselves. I move and think much slower now. Some activities take all of my mental strength at one time.
Be present. Stay present. Look at ME and Listen to ME with ALL your senses please.
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I used to be a combination of Indiana Jones and a fellow member of the island nation which delivered Wonder Woman to the world.
I used to be busy doing many things and stayed away from confusion and excessive talking. And I moved through life listening to the beat of my own drum, was fearless and way too full of courage.
Now, I am not that person anymore. I rather be in one place enjoying nature, reading, inhaling sea air, or doing my thing. I do not even feel to hike anymore. The fearlessness has significantly been calmed and, I am neither here nor there, on the courage.
I am satisfied with my life and quietly doing my do.