amnesia, anxiety, body language, brain injuries, brain injuris, brain trauma, debilitating concussive, dogs, ear ringing, facial expressions, frustration, gaining strength, healing, horses, insurance coverage, Longreads, Longthreads, new skills, old friends, positive living, reading lips, recovery, saddness, service dogs, sign language, taumatic brain injuries, TBI, tinnitus, winning and hope
You don’t choose a life, you live a one. Some people feel they have a great amount of control in their lives until the fickle humor of life takes you on a detour. The unimaginable enters without knocking.
Throughout life we all make simple life choices, as I did one day after being diagnosed with my first TBI. It was an ordinary day, performing regular household duties in the upstairs of my beloved Victorian home with my three happy Rottweilers. A lovely sunny day in Colorado, nothing out of the norm, I needed something in the kitchen and began to descend the stairwell.
Descending the stairs, the thought of my need was still firmly in my mind as I walked through the small entrance way of my home into the living room. As I crossed through the sliding wooden pocket doors to the dining room my memory began to fade. Telling myself, I will remember when entering the kitchen. As I crossed the threshold from the dining room into the kitchen all memory of why or what I needed was gone. Stepping into my galley kitchen I was lost.
Looking around at the cabinets, peering into the refrigerator, out the window and then turning to face the dining room where I walked from, desperately attempting to figure out what brought me to my kitchen, I felt a dreaded sense consume me with uncertainty. My dogs had followed me with their smiling faces, for them this was an adventure around our home.
A sense of dread dominated my body as I gazed into the dining room helplessly from the kitchen. Stepping onto the wood floors I did not remember where I was, why I was standing downstairs, what thought brought me to (now) the dining room? Logically I knew I had walked into this area of the house for some reason. Nonetheless my mind was blank, no pictures – no recognition, nothing; I shuddered with a sense of panic.
My trepidation exacerbate into such angst I began to shake as I turn around in the bright sunny dining room losing all connection of knowledge to where I was and why. The glass dining room table, the turquoise cloth chairs, the art on the walls began to feel foreign to me. I looked down at my dogs, their smiling happy faces were the only familiar sense that my brain would connect with, the connection of my own home was fading.
As I walked back to the wooden pocket doors, I noticed a comforting room to my left. I can tell you today in 2014 it was my library, but at that moment in time it was a stranger’s house. Glancing at the living room, immediately I turned, slowly backing up to a small part of wall in sheer terror. My three dogs following me with inquisitive looks. Pinning my back to the wall with my hands pressed flatly against the wall, wide eyed I stared out the large bay window. There stood a large hedge of lilac bushes which gave my Victorian privacy, I could see no one on the sidewalk and I no longer recognized the room, the neighborhood, my furnishings, art or other rooms in this house. I was lost!
In utter confusion my body slid down the wall into a crouching position while my shoulders began to shutter, my stomach was clenched in my throat as I heard a horrifying wail come from my mouth. It was I who was bellowing in fear, with tears streaming down my face. I did not know where I was in my own home, and it was questionable if I knew it was my home.
My three Rottweilers stood in front of me looking at me, the male Rottie sat and gazed at me with his head cocked to one side, the two females fixated their attention on me while I cried. I only knew my dogs, not their names, rather they were my only hold on reality, the only physical connection I could sense in my inter-dimensional state of horror
The tears welled up in my eyes with gushing force while my arms and hands reached out instinctively to hold onto my dogs for dear life.
It is common for a TBI person to forget the very next second of what actions they are to take. It might be called “short term memory loss”. Simple actions such as reaching for a glass of water and the attention is drawn to a book on the table. The thirst is forgotten while the book is retrieved, later to think of water to quench one’s thirst and begin the action of reaching for a glass to fill with water. These moments are bewildering and frightening. These absolute sensation of being unadulterated disconnected from our life is one of the most terrifying experiences I have ever felt.
Similarly walking from room to room in my own home forgetting the original purpose of what made me get up to venture to another part of my own house, forgetting the moments prior are frustrating – exhausting – often filled with angst resulting in debilitating confusion for a person with a TBI. The original thought dissipates as if never existed.
I experienced a full measure of amnesia and do not remember the rest of the day, the week or even the month. I remember the horrifying feeling only and this horrible feeling was going to be my way out of amnesia; the feelings would be my retrievable gift from the “lost darkness inside”.
As I stumbled through my days, most times I forgot I had a “mild” TBI per the doctor’s diagnosis. Friends would call, the conversations were normal asking each other how our days were going, about our workouts, other friends and of course a lingering conversation about work, then invitations to a dance or theater. We would arrange to meet in a couple of days to attend a dance – as we said our goodbyes – that was the end of the conversation – the end of the moment – the end of my memory of that person and invitation.
The arranged night would come to meet for the dance as I mulled around the house or attempted to read a book, the phone would ring with my friend on the other end asking where I was. Of course I am home “you are calling me here, silly.” “MicheleElys, we are to meet at……. Tonight?? I am waiting for you”. Dead silence. “I don’t remember, did we talk about this?” Silence on the other end of the phone. “Yes, I called you three days ago and you were excited about this dance, you love to dance. What is wrong with you MicheleElys?”
Once again I feel nothing, an emptiness inside, a blank screen for a mind, no connection to my friend or memory of conversation. Ten years later I remember with great clarity, however my friend did not wish to wait ten years for me to get it together to remember to meet her at a dance. And I forgot I had a TBI.
The essential missing link here were the medical interventions – cognizant doctors and therapist who could help, more educate me (if I could remember what they might tell me) of what to expect after diagnoses. The doctor had a suggestion to have a personal nurse follow me through parts of my day; the insurance said no. No further action was taken.
He asked about my organization, I told him I was extremely organized (which is a fact), only I could not remember where the organization was placed. Most often in the most logical place, however my brain did not remember logic, only responded in logic.
The doctor said “you might want to contact a psychologist”. I asked what a psychologist would do, still not understanding the massive daily problems I was about to face in my life. Did my doctor have a referral? Your insurance has denied all referrals we have suggested.
A moment of confusion came over my thoughts, “if they denied your referrals, whom am I to search for if you do not give me some reference points?” My brain seemed so dull and confused that I could not ask a sensible question. All I remember was this statement, “you have a mild TBI and you will be fine, your insurance company has approved some testing, if you like I can set you up for testing.” “Will this person know who I might see for help?” “No, it is only testing. You might consider asking your insurance company for an IME”. This term I understood, the rest of the discussion was confusing.
This was over ten years ago, I was left to wander in the dark without guidance. I taught myself how to deal with the amnesia and memory lapses through feelings, adding pictures to the feelings, jotting notes down to remember what initiated in my mind to do something or go somewhere. I used my background in psychology coupled with an analytical mind to create organized patterns of behavior to eliminate a temporary memory lapse. My constant questions when confusion or disorientation or memory lapse occurred where: what and why am I here, what was the feeling that brought me here and what is familiar in my surroundings. This is a simple explanation for a very complex remapping of the brain. The new behavior must build upon its’ self with a constant vigil and determination.
I formulated the strongest connections as my foundation, my dogs, my home and that I lived in Denver Colorado for many years. What else? I made lists. I made long lists for the moments when my memory would fail. In the home or car or out in my garden.
As I grew to understand cognitively the “feeling lost” I taught myself to stop in that moment and reach inside myself for the feeling of what or where I was going.
If I was on the road to a friend’s house and suddenly (these moments are sudden without notice) I would forget the route or where I might be driving or why, I had written on a post-it my friends’ name and time I was to be at their house.
All too many times, in route some construction or new trees were planted, this made the route unfamiliar. I taught myself to pull my car off the road, pet my dog while looking into his or her eyes and say “this is momentary and we will get to our destination”, climb out of the car holding my post-it note and picture my friends’ face and home in mind. I would see their house and if possible backtrack a visual from their house to where I was standing. If this did not work, I would think of my home, the last time my friends were visiting and picture their house.
Once I could feel their home, again backtrack from their house to where I was temporarily lost. In procession as I could see and feel their home, I would take a moment to keep the image in mind and take that image all the way to my house thereby reconnecting the memory.
Unknowingly, I was reorganizing and remapping my brain. The TBI affected my original photographic brain was destroyed down to 10%. I had forgotten I once had a photographic brain. It was simple logic at use during these scenarios. Alarmingly once I employed these techniques, I was never late.
I lost most all friends during these times, not having the where-with-all to explain my own deferment for I forgot I had a TBI, nor could I explain the disarrangement of a TBI. I was now a different person many could no longer relate to. I was different without explanation. And my injury was not obvious.
To further my memory and reorganizing a jigsaw puzzle of a brain, I used colors, lots of colorful post its riddle my home in every room and car and office. I would write the day, date and sometimes the time. I had two calendars, one upstairs one downstairs. I found I should never start cooking something on the stove and leave the kitchen. This action would produce all too many burnt pots that found the garbage or recycle bin.
My dogs went with me everywhere. A couple of long caring neighbors insisted that I tell them when going on a long days hikes and where. It was normal course to tell them when taking a day trip, they cared and I was single. My long mountain jaunts, alone with dogs were a concern to them. Although I forgot the most important reason for them to know my whereabouts, I have a TBI and amnesia, it never occurred to me and they never knew.
During these earlier TBI years I wanted to read as much about brain injuries as possible. Off to Tattered Cover for books; the only book I remembered was Oliver Saks, The Man Who Mistook His Wife For A Hat”. The title was absolutely logical for how I felt, the title of this book made sense. I could not remember one sentence, nor could I comprehend what I had read upon closing the book.
Reading and the comprehension of reading a book would take many more years of reorganizing and remapping my brain in order to comprehend articles and books. This resulted in my developing an annoying habit; asking constant questions of anyone who had some knowledge like a four year old. Then write the epiphany on a colorful post-it.
All this effort was a great beginning; my private practice had to end and later I rejoined a corporate environment at a hospital nearby. Friends fell by the way side, there was not the understanding I have now, for I forgot I had a TBI.
Resilience prevailed, for as a military kid losing friends meant meeting all new friends. The only person who stayed in my life was Franky my hair stylist. It took me more than ten years to tell him what went so horribly wrong. I kept forgetting I had a TBI.
Beyond the colorful post-its came another part of my healing, a horse and a dog…….. coming up next.