anxiety, body language, deafness, debilitating concussive, dogs, ear ringing, facial expressions, frustration, gaining strength, healing, hearing lips, hearing your lips, horses, insurance coverage, Longreads, Longthreads, new skills, positive living, reading lips, recovery, recovery & winning, service dogs, sign language, TBI, tinnitus, winning and hope
Last week my good friend Lisa asked me, “what kept you going through all these years?” I didn’t have an answer for her other than a quick thought; “ it might had been my determination”. I knew this was not the truth and further thought had to be given the question.
What does keep us going through the dreadful times of life?
I thought about who I was for the last week and why I was the person I was. Was it the adventurist in me, grabbing every joyous moment and squeezing every juicy drop of joy and love I could drink, then face the shadow? I have fallen on my knees crippled with devastation through these years (and other times), particularly since the traumatic head injuries and my entire body broken requiring painful full body surgeries.
After some thought and silence, these words came to me: Winning and Hope! I was and still am winning through this ordeal beyond all odds. Beyond all the debilitating concussive syndromes, a crippled body that I workout daily to regain strength and muscle tone; I am winning this battle I say to myself. My ability to win gives others who suffer more than a shimmer of hope.
Also, I have had my Arabian horse traveling this course with me for the last fifteen years and three dogs; two of which have died of old age. My Sweet Sade, (a service dog of eight years) all have been my bastions.
As most who have TBIs’ the injury is not apparent, nor where my physical injuries until I had a leg brace for a year. I also did not tell anyone of my injuries, by telling others often develops an insignia in their minds and actions. The guarded aspect allowed me to fumble through the mire with doctors and therapists uncovering the scope of injuries.
In the very beginning, I was infuriated, angry, frustrated, and anxious; what was most frightening would be the onset of my brain going blank. I could not think, I had no brain-works just a blank screen inside my head. A formidable state in anyone’s life given our fast pace world.
I was dangling on a thin string in those years – no one seem to understand or have the desire to explore, a plethora of emotions carried on the patients’ back. The contention instigated a fury with insurance companies, attaining other insurance with pre-existing, contending with doctors and therapists who would not listen, same with lawyers – worse, my frustrations appeared to others as a “difficult patient”. I have Won with Hope to give to others now, I tell myself.
A mere statement from the dictionary, cold and inhumane. Pathetic, minuscule for the agony tinnitus does cause. The bevy of ear and head crushing reverberation; never ending discord of static, often causing debilitating exhaustion.
At this time there is no known cure. I tried herbs, their effects where not worth the money. There are feedback tools, none of which helped the torment. And some speak of a laser surgery with a 40% of positive result, however if gone awry the deterioration is misery.
Tinnitus: A gushing whooshing roar, a cacophony of multiple high pitch frequencies that never end. Similar to being submerged in hundreds’ of feet under the ocean’s water edge, pressure consumes the senses, the brain might feel as if it is pushing the skull ready to burst.
Often I felt my brain to be a small dingy on a stormy sea sloshing about, or a sensation of my brain being tilted in the interior of my skull. This brought on vertigo – dizzy spells; these few fore mentioned sensations have passed after resuming my long rides with my horse and balance therapy.
Additionally, when further stressed with interrupted sleep patterns prevailed through the months, a higher intonation sent piercing shock waves suddenly through my head, melding with the already crush of a gushing roar. At this moment a shriek comes from my mouth while grabbing my head, my body falls forward and assumes a fetal position.
Or low drone cadence swells through, as if it where the conductor of the roar and gushing high pitch tuning forks, rearranging their tones to a shrill pitch with the drone in upper command. I close my eyes and wait it out.
The testing conducted (thus far from my experience and doctors who know little about TBI) is typical “loss of hearing test”. This is completely ineffectual, for people with tinnitus have not lost their hearing per se. The tinnitus is masking the voices and sounds we wish to hear, as if we were attending a loud rock concert and friends must yell directly into our ears to hear their conversation. Having head phones attached to our ears does not mimic the loss of hearing experienced by tinnitus. Tinnitus fabricates a filter between the world and our ability to hear the spoken voices verses the inner tormenting acoustics.
Once a doctor told me to turn on a fan, “this is white noise, it will calm you”. The last thing a person with tinnitus requires or wishes to hear is more needless noise. It does not calm the afflicted person.
Making your hearing work without asking people to repeat themselves. People who have never experienced tinnitus, the degrees of the roar, the brain pressure from the cacophony of sounds, will never understand what you are going through; turn your agony into an unseen useful skill.
Those with TBI are the ones’ who must adapt to the world, in turn, we bring a greater person back to the world, not one of victim but one of adroit and resilience. That is, if you wish to live with a modicum of sanity.
Humans learn from childhood to read facial expressions and body language to later manage ourselves in public and personal relationships – with a little ingenuity a new aptitude is born, learn to “hear people’s lips”. Yes, you can hear the functions and formation by way of lips and facial muscles, understand common day sounds by expanding these innate mannerisms learned as a child through adulthood by increasing the characteristics. This allows the tinnitus to take a back seat in life, allowing you to enjoy social and public occasions, theater, dinners with friends and other social functions.
At first as all newly developing tasks this takes patience – time, this may result in some temporary fatigue. Time is the essential friend here and this allows for more intimacy in relationships without giving way to an annoying disability. You have to be your own judge in what you can handle in sound or noise. The tinnitus has now caused a level of sensitivity which was not present prior to the injury, make this sensitivity work for you.
Much of my life I lived in abject silence when at home – it is restful and calming. Occasionally I will pull out a favorite CD, close my eyes and relish the music. I found relaxing in another room or delving into one my passions – such as cooking to music is especially wondrous. The tinnitus takes a subordinate position.
Pleasurable moments with the intention of decreasing stress I find in nature, the song of birds while hiking with Sadë. Being with my dog and horse allows me to be away from the public venues, a respite. Experiencing Sadë’s joy, bounding out of the car while scampering off to a running stream – the smile on her face with bright eyes, the birds that fly overhead, the sunshine and fresh air filling my lungs censures the tinnitus.
Long endurance rides on my Arabian into a forested area or an arroyo, stopping to listen to the quiet of nature, no cars – trucks – or voices. Or simply grooming my Arabian, listening closely to his breathing or a nicker.
Placing my face in his rounded neck and mane will abate the roar in my ears; reaching my arms around his powerful body, sensing his strength and gentleness. A moment of tranquility consumes me. Klassic gives me strength through the deep love I have for him, he has kept me going for 15 years.
The distortion of tinnitus is faint in the background, the joy of nature’s aromas – fresh air and sunshine squelches the tinnitus as I breathe. Or the anticipation of friends joining me for dinner as the house fills with the aromas from the kitchen. Acquiescing to other senses, sounds, tastes, and feelings relieves the continuous haunted roars of tinnitus.
The bottom line living with Tinnitus: I taught myself how to “Hear your lips”, read people’s facial expressions in order to understand any conversation fluently. No one would know I am mostly deaf. I did begin to learn American Sign Language and still know enough to get me through a short conversation. Nonetheless, I would rather relearn my once fluent French, Portuguese and Spanish, before tackling another complete new language. Albeit, signing has come in handy many times through daily life. The point being, we all have enough on our plates, I do by winning this long medical battle. At this moment in life, living back home in Colorado, these moments are about FUN, HAPPINESS, RIDING MY KLASSICAMIR and enjoying life. It has been a long ten years, it is time to enjoy some of my accomplishments. And continue to develop by educating others about Traumatic Brain Injuries and the recovery process.
It is not just hopeful, there are many people who do recover. My passion is to speak on these developments along with studying all the different Universities, Armed Forces, Provider Groups – align with them as a resource speaker. Public speaking was a passionate skill in the past and still is, with the message “you have a traumatic brain injury, you will recover” if you wish to. It takes GRIT, patience, redevelopment and a deep determination. And a Cheering squad that I am part of. “The Finish Line Is Our Starting Point.”
What keeps me going is that I am winning this battle. What keeps me going is sharing the indomitable spirit that drives me to give others, some enduring hope – finding the doorway out of suffering hell into a shimmer of sanguinity.
I hope this gives anyone reading, a sense, that there are alternatives to your suffering. If you know someone who has a TBI or brain injury; a caregiver or health provider; please share these blogs with them.
I wish everyone relief and recovery