Agony of TBI, the GRIT in Recovery (a recent speech)

first nice smile

Recently I gave a speech here in Colorado Springs to other medical providers. It was an “Experiential” speech delivered to a small audience. To help those understand a TBI from the inside out,  taking them through the experience of having a Traumatic Brain Injury. There was a small applause from the dozen or so members afterwards with one lady stating, “MicheleElys, you are a great actress.” Thanking her I smiled and blushed.

When the minutes from the meeting and two presentations came via email, inclusive of my speech; I was horrified and began thinking how can I approach this issue of my words, sentences out of context, etc..? The entire summary was not what I stated and I was afraid to ever show my face again. I suggested I write a synapses. This was greeted with enthusiasm. For sometimes we must fix other’s good intentions. And welcome the opportunity.

Given the speech took me over two weeks to write, tailored down from 14 pages to 4 page, then create an outline for an hour long “experiential” dialogue, with suggestions on patient care and how I recovered; the synapse became just as daunting. Another week and half to condense a 4 page succinct summary dealing with the original 3 focused points, that were “experiential.” How do I make my words sound experiential while not performing in front of the group?

I had hit my own wall of impossible! This is when we all must let go and do the best job we possibly can through words and formats.

What was more agonizing, was, the current blog regarding Misdiagnosis, Hysteria and Recovery in the TBI (Traumatic Brain Injury) is LATE (!!) According to my schedule, editing along with poignant photos, which is currently being written, taking another long two weeks of further research, proper name corrections, links ….AARRGGHH I am behind my own time line. sunset joy

So, in the interim, I thought I would share my speech summary. There are many tips on recovery, not only for TBI but life in general. This allows me to feel productive online and in my life.

Recovery from the impossible.

The purpose of this talk was to promote others to experience the impact of a Traumatic Brain Injury – concussive syndromes from the inside out. And, to affirm individuals do recovered. Having gone through the grueling ordeal in tandem of multiple surgeries: both shoulder joints, entire left hip and leg muscles and thigh T-ban ripped, torn left knee meniscus, (various sprains), 1/3 of my right leg replaced with apropos physical therapies, over a ten year span. My body and my brain recovered with the 3-D’s & an H; Determination, Drive, my Dog Sadë and my K beautyArabian horse KlassicAmir!Thanks to my surgeons – physical therapists, two wise physiologist (Brain Spotting, off and on for a year), my Arabian horse who kept me alive, and my Service dog (Blue Heeler), Sadë.

First TBI was in 1996 via a whiplash; next came in 2004 with full body injuries where I emulated humpty dumpty (and 6 subsequent TBI’s). Being misdiagnosed from the beginning – the severity of my conditions were ignored; I became my own lab rat research study. My education and past career knowledge in psychology and behavioral sciences – using logical reasoning and quantified knowledge, reviewing DVD’s on the brain function (and more), I recovered!   There are a few residuals; I see these as being normal. No one survives decades in life untouched.

First the three focal points and then what I found effective in recovery for these components. The recovery processes do overlap into other areas.

Three focus points in my discussion of post concussive syndromes:

  1. Transient amnesia:
    1. Dissolution and disintegration of: environment, self-awareness, personality and of one’s life.
    2. different areas of the brain that can be affected while other areas function
    3. recognition verses fearing the episodes
    4. weather effects
    5. warning signs
    6. fading in and out of amnesia – reconnecting
    7. lack of rest and sleep
  2. Panic
    1. Internal earthquake
    2. Weather effects
    3. Overstimulation
    4. Lack of rest and sleep

Trapped in one’s brain (my little mouse friend)rat n tail

    1. Panic – into outburst – extreme frustration
    2. Trapped delusional response: inability to function, articulation difficulties in conversation, neurotic obsessive behavior (seemingly),distraught,
    3. Inability to read or accomplish small tasks, or follow directions
    4. Fractionated from: focused and congruent thoughts, memory (long or short term), bio-geography displacement, facial recognition dysfunction, functional inability from inside – outwards
    5. Suicide and shame are common a monumental by product of TBI –feeling trapped, “this will never end” sensations and thoughts.
    6. Lack of rest & sleep

First a few words on diagnoses: Mild diagnoses and misdiagnoses lead to great difficulties for a patient. It was the post concussive syndromes that required attention, not diagnostic categories. (Currently I am writing an article on my blog regarding “mild concussions” for I conclusively disagree with the term). My argument is that we need to treat the conditions exacerbated from any degree of TBI/Brain injury or disorder. A concussion is going to show its self over time, the syndromes are what require attention. Treatments in dialectic – cognitive through awareness in behavior, reactions, and understanding the damage/disorders in varying degrees, (a simplistic view).

  1. SLEEP AND REST!!! The most essential part of healing. Sleep and rest stabilizes the trauma event and patient. puppy sleepsBeing sent to multiple doctors and therapists (over three dozen) five days weekly was exhaustive.
  2. Retelling the trauma event, how and when, was more damaging. My suggestion is to have the patient or helper write the event down, hand the written discourse to each interviewing professional. The plethora of scans, EEG’s, SPEC – PEC – MRI’s and more, lead to more frustration and fatigue with no proof of damage. For the surgeries MRI’s were a necessity.
  3. Amnesia: having a strong-hold, animals – person – contact that can remind a person who they are, where they are driving to or from; to be calm and recognize areas of one’s life are essential. My Arabian horse and Sade (service dog)calm sweet sadecut were the most beneficial factors for me.  I could separate myself cognitively, know I was in an episode, examine the areas being effected, how long an episode would last (days) and what areas I could function – reviewing brain cognition.
    1. Recognition without fear. This is most important to tell one’s self this is a passing moment. Understanding Transient also means the entire brain may not be effected in these episodes as to complete loss. Episodes are arbitrary.
    2. Post-it notes: reminders where I was going – what I was doing and phone numbers of who I was to meet, or store – location and lists as reminders.
    3. It is important to know the predisposition of the person’s life prior to injury. What- were- they were capable of and how did they function in life prior to injury. I call this (Tender Footing), for the recapitulation can overstimulate, increase grief and/or depression. A “forward feed focus” to reconnect previous positive abilities (and more) are desired. The original person is still very alive in the injured brain, desperately trying to make themselves function on the outside. Panic/angst often are the results when over-trying. Recognition instead of over-stimulation is essential prior to panic which are exhaustive in nature and leave the body and emotions in turmoil.
    4. Not conclusive – extreme weather such as severe thunder storms which effect barometric instabilities might stimulate amnesia episodes. Still evaluating, my findings the more REM sleep the less of these syndromes effect the continual dysfunction. Instead, strong neuronets are formed while the brain begins to function on a positive healthier capability.
  4. Panicanguish male
    1. Medications: using these as tools, not as cures. Learning how the medication activates and feels can lead to a new behavior of self-release in stress. This is highly dependent case to case.
    2. Meditation or quiet time. Getting away from the to-do list and allowing ourselves to be human. Getting outside is vital, nature can be soothing.
    3. Forming new living habits. It is stated among some it takes 30 days to form a new habit. I believe it is the moment you make up your mind to a new resolve.
    4. Celebrate and recognize successes along the way: recovery process is overwhelming due to length.
    5. Understanding how Grief shows up in different aspects. e.g. I do not cry for the most part except when one of my animals die. I was admonished by a therapist once for not crying and behaving as she thought I should. That relationship ended quickly!
    6. Recognize what panic appears to be from the outside looking in and vice versa.
    7. Find these secrets and openly talk about the embarrassment that often is associated with TBI – grief – suicide, making these areas very safe to talk about.
    8. Learn to listen: listening has become a lost art.
  1. Trapped in one’s brain
    1. Learn to Listen to the injured person however crazy at times! Give a slight smile of acknowledgment, affirming in the physical the “mind’s job is to think”, sometimes we are trapped in our brains without having a TBI.
    2. Being trapped can be exhausting and fear ridden, affirming this is part of the injury and not what one will suffer for the rest of their lives, rather, if they are cognitive that they feel trapped is the beginning of understanding the injury.
    3. Encouragement: A person who surmounts a disabilities becomes a wiser more confident person for having the courage and grit – bringing forth more strength and conviction in their lives. “forward-feed.”
    4. Many studies find those whom recover from disabilities are more agile in life, transformation becomes – adaptability and resilience throughout life.
    5. Believe in yourself – There is no certainty, only opportunity. 

  2. Diet:An imperative factor to have proper nutrient. Being a vegetarian proper diet of oil, protein, fruits, vegetables and carbohydrates (brown rice – artisan whole grained breads) are essential. No process food what-so-ever! Fish became a must bi-weekly with the use of olive oil, sesame oil in tandem with raw or lightly cooked vegetables. Eating small meals (for my size this meant 1 ½ very small meals daily if I was that hungry, each person needs to monitor the portion factors according to their size and activity), kept weight in check along with exercise once the surgeries were completed.
  1. Building Triangles:I constructed a primary formula to regain three paramount functions (in the beginning).
  1. Starting with the raw-vulgar emotions which invaded the entire scope of my life
  2. To regain my photographic brain and memory/processing abilities
  3. These three I could build other triangles on, each being “cognitive/behavioral ability” would interrelate with one another, improving and strengthening further abilities.

Photographic brain/Pictures                             Memory/Brain Processing

                                                                      Emotions

 

  1. My Desire in Collaboration is:
    1. Educating myself and connecting with many individuals and their findings.
    2. Help those whom have never experienced a TBI to understand from the inside out of TBI and recovery processes.
    3. Filling my resource bank with all the current studies, providers, their findings, techniques that work, sources where to send people. Reading articles or research in progress, along with new models that are working with multiple brain dysfunctions.
    4. Writing as much as possible these finding for many who do not have resources, or knowledge of universities, doctors, therapists, individuals in understanding and recovery process.

Cheers, MicheleElys

 

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