First thought I wish to share with you, is, if you have a TBI, you are “still” YOU! You did not lose you, you need to relearn how to make yourself function from the inside out. Here we are standing together at a point in life I call “the finish line is our starting point™”. I coined this phrase to change my own attitude, after reaching many finish lines and having to start over again and again and again. Fresh starts present more opportunities in life; what will you do with them?
TBI’s are frightening, confusing, frustrating, exhausting, devastating and hidden from public view! One could search the dictionary for every adjective to describe what each person with a brain injury goes through every second of their life, and it still would not explain the reality of what they live. It is overwhelming to think of all the post concussive symptoms; so let’s not think about all of them, let us deal with them. Let’s get to the nitty-gritty of recovery. It is long, grueling and will take a monumental amount of internal fortitude and grit! Doctors and therapist may guide you, mention some behavioral techniques such as mindful non-judgmental therapy approaches in DBT© and Bio Feedback and more. You will be doing all the work of remapping and reorganizing your brain.
You need to be determined, focused on your outcome, and summon up all the grit you can mustard from your internal fortitude and prior skills (!!) You need to be kind, compassionate with yourself and allow your body and brain to rest. Rest is essential for the healing process. For those of us who are “achievers” or “A” personalities, this might be the greatest accomplishment you might ever achieve in your life, give it patience and All of your attention – let that frustration be your rocket fuel in energy, for you are going to need every micron of emotional energy. There is no hindsight or looking back, statements such as “I wish this had not happened” will not serve you; everything in you needs to move forward.
Now that I have been blunt in my brutal candor about the recovery process, I want you to know, I will be writing a series of articles of what I went through, how I employed different techniques to recover from my injuries, to alter the dysfunctions of my brain and reorganize my brain to work again. I wanted to feel and live what would be a normal life for me and more. Never discard your dreams, after each disappointment, my dreams only grew larger. This recovery took me nine and half years from over a half dozen TBI’s from my fall on black ice and asphalt which almost broke my entire body.
I avoided speaking about my injuries due to my own SHAME. Why would someone feel shame from an injury not caused by any fault of their own? Fear of public perception and ridicule. Many with TBI’s hide this (already) hidden injury due to shame and lack of knowledge about the impairments and post concussive systems that vary in wide spectrum. Some symptoms only appearing occasionally without notice or warning, while other symptoms become a plague of confusion and embarrassment, malicious, and a monolithic hindrance in frustration.
At this moment I need to stop writing and get something to eat. I am horrible about sitting down and eating albeit I am a gourmet cook (and a vegetarian), I have not eaten today and it is now after 2PM. Time for some Olive oil (essential part of my brains healing) and fresh tomatoes and something more. It doesn’t sound like much, but this amount of food fills me up. You do not need to be a vegetarian to heal; this works for my body, I was born a vegetarian. Light eating with purpose and intention has been a wonderful tool of health for me. Be back in about half an hour.
That was a nice break. I had rice with fresh tomatoes but I need to tell you how I make my rice. It is full proof every time and takes 22 minutes from start to finish. I use a wok with olive oil, sweat some garlic (a lot of garlic) with shallots, then pour the rice into the olive oil (enough to have for several days), stir and add water. Boil until the water is gone and then let sit covered. While still warm I add, fresh basil, feta cheese (nuts if you like), this time I added Kalamata olives. Later when bowling up a cup and half, I add my fresh veggies. This will be my only meal of the day.
Why do I eat so little? The answer is a combination of factors and a by-product in correcting the massive injuries to my body, testing of said injuries and our medical system, this is “a warning”. One, all the drugs used for testing and misdiagnosis of such testing lead to my digestive system failure. The drugs (which are necessary) for pain management during my surgeries added to my digestive problems for a short time. The surgeries exacerbated from my fall were: full right knee – good portion of the tibia and femur replaced; both shoulders surgically repaired; left T-Ban leg muscle and tendon which were torn along with left knee meniscus tear – (all diagnosed in the subsequent six years).
I am eternally grateful to my two surgeons, Dr. P Stull and Dr. Steven Jones along with my two physical therapists, Cindy Fitzgerald and Heather Robinson who brought me back to my original hyper mobile body. Healing the entire body, managing the pain and my crankiness was impossible at times, nonetheless I am a better person for having gone through the ordeal.
The one toxic drug test that collapsed my digestive system was a Barium test, for an ailment I never had. I told the doctor I did not have acid reflux but he insisted on the test. If I had the were-with-all to mention this factor to a few of my other doctors, (TBI promotes confusion not reason) maybe… no hindsight! The Barium ruined my entire digestive system, I no longer could eat a normal meal. The results of this toxic test was egregious and lifelong. I could drink a couple sips of juice a few times every hour for several weeks following the Barium swallow. My body agonized in cramps so severe I would double up in pain, grabbing my stomach sometimes screaming. After three months I would have less than two cups of nutrition daily, this included liquid and food nutrition.
The tests proved no acid reflux or other problematic ailments such as hernias. The lingering affect was permanent damage to a perfect digestive system. Having other people to help in your recovery process might avoid such problems, I did not have a support system.
Now in 24 hours I might be able to eat (approximately) 16 ounces of food, sometimes a little more. This makes every morsel of food precariously important for my body. I consume carrot and tangerine juice and water, making a full smoothie with melon, banana or cucumber is too much food for my stomach. I eat a great deal of raw or partially cooked foods. e.g. spinach, brussel sprouts, asparagus, romaine lettuce – (most all served with olive oil) tomatoes, fruits, eggs. Truthfully I consume one and ½ quarts of olive oil monthly.
Having a TBI will lead to questions of: why are we so different from the person we have known all our lives, developed over the decades. What happened? Where did our brains go and why do we feel trapped in our brains or bodies without the ability to function as we feel intently inside? Why are we now different? The answer is you have a TBI or stroke that caused a brain injury.
Here are a some post concussive symptoms:
Please note, I am refraining from medical terminology and diagnosis, in attempts for anyone to understand.
- Immediate memory lapses: (within seconds, while turning to make a note on a post-it as a reminder), the very act of turning, picking up a pen the mind is blank, forgetting the purpose of the nanosecond objective. One may collapse in utter frustration leading to more angst.
- Long term memory lapses: later the memory returns in sporadic or clear detail of the moment.
- Transient global amnesia: it will occur any time you are awake. Amnesia might remove portions of your life for a few moments or long term. Amnesia might affect some parts of your functioning memory then while dissipating as if it were a ghostly apparition, these moments may leave a dulling sensation or confusion. (More detail later on this subject and symptoms).
- Word halting or forgetting words in conversation: The inability to have a congruent conversation. Inability to understand a simple or any conversation, inability to read and understand one sentence or paragraph.
- Lost: Not knowing where you are going while walking from one room to the other; forgetting rooms in your own home; not able to determined directions or recognize familiar faces.
- Becoming overwhelmed and over stimulated: oft times resulting in panic attacks that resemble an internal earthquake coring through every cell, your mind goes blank further panic erupts.
- Forgetfulness: where you are driving your car, to work, to a friend’s house, to the store or home.
- Changes of season: If there are seasonal changes such as trees that bloomed or construction in the road this will discombobulated your memory, the mind becomes lost and you might become confused – with a plethora of emotions to follow.
- Crowds of people: dropping your shopping list, someone reaching across your body and you lose not only your balance but panic consumes you, not recognizing faces.
- Hallucination: the carpet now moves and crawls. Perceiving crawling shadows on the floor that whisk by unidentified from the corner of your eye. The walls move, particularly white walls will waffle – light fractures the solidity of the wall, you know you can put your hand right through and touch another dimension. Windows or doors, frames of any kind, what once had a sharp smooth edge will no longer have definition. You find yourself walking into the door jams and plate glass windows thinking it is a door that will open automatically. Blurred night vision.
- Tinnitus!!! From a whooshing sound to multiple high pitched screaming noises, to low drone humming or roaring pitches that shocks your head, ears and brain. The pressure can be so crushing at times, as if you submerge two hundred feet into the ocean. The tinnitus might be a high pitched tone causing considerable pain. It is not a headache, this is what I call “brain pain”. Hearing voices and music inside your head.
- “Brain sloshing”. Your brain feels like it is sloshing inside your head. I would refer to these moments as: my brain is a meager dingy on a stormy ocean sea. You might have the sensation of your brain feeling tilted in your skull or scrambled eggs for a brain.
- Articulation: No thought can come clearly through the feelings which you wish to communicate. By the time you begin to speak you know it is all wrong, no resemblance of your intended conveyance.
This is a short list (a beginning) in the experience of TBI’s, an introduction. I do not wish to overwhelm anyone reading. There are post concussive symptoms that will be listed, all of which I experienced, most I recovered 95% to over 100%. The one lingering deafening problem I do have is the tinnitus, however I modify this problem every day in some creative fashion.
As these articles are produced, the healing process will also be written in detail – as much as I can condense nine years into palpable and simple explanations; with further post concussive symptoms.
Finally I must remind myself and others, gratitude is essential in life and recovery. Even for modicum of gracious moments. My gratitude lent to a different perspective than many might experience or view as a positive outcome, for many people (a few new friends), doctors and therapists – “to all the people who have left my life, each of them, their presence in my life made me a better person”.
TaTa for now
DBT- Dialectical behavior therapy a form of psychotherapy originated by Marsha M. Linehan, researcher at the University of Washington.