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TBI Advocacy Group Stories of Lensmasters' Experiences with TBI in Their Lives

Updated on November 11, 2013

Self & Family TBI Advocacy on Squidoo

This lens highlights several lenses created by those who write on Squidoo whose lives are impacted by Traumatic Brain Injury.

Our TBI lenses depict our struggles, steps and triumphs after Traumatic Brain Injury changed our lives, and that of our brain injured family members.

We present documentary lenses, hopeful lenses, skill-based lenses, story lenses for a range of purposes - to broaden the scope of knowledge among those who share our learning experiences.

The illustration presents the coup/contracoup injuries sustained by my son, and by other survivors of Traumatic Brain Injury. His head hit the pavement on the back side, slamming his brain down to the pavement.

His brain whipped into reverse and smacked into the frontal skull, continuing to ping/pong back and forth until the movement subsided. In this way his whole brain sustained massive Traumatic Brain Injury.

illustration adapted from wikimedia commons TBI

But we also strive to speak to society, to get stories of successes and challenges for those living with TBI into the forefront of the national discourse. Once Traumatic Brain Injury alters an individual's life, the journey is transformed.

Occasionally a TBI survivor returns to their former jobs, family and social lives purely under the force of their solitary advocacy, but most often the individual's quality of life (including all aspects of vocational, family, and social parts) is largely determined by the voice of their strongest advocates.

This group focuses on the ways in which lensmasters and/or their family members use our gathered insight to surmount challenges of which the uninitiated public remains unaware. The purpose of this lens is to educate readers and to provide an avenue of support for Self & Family TBI Advocacy.

TBI Speaks to the Senate

I sketched the story of my son's 1st yr post-TBI. in TBI Speaks as preparation for my testimony to our State Senate.

My then 21-yr old son had suffered a massive Traumatic Brain Injury, on the evening of his last Final for Fall Quarter 1988, at the University of Washington, in Seattle.

The state Head Injury Foundation recruited me to testify at Senate Healthcare Committee Hearings. The Committee was considering revoking the repeal of the Law that required motorcycle riders to wear helmets.

My son was a college student who had always worn a helmet, back home in the rural region where we lived, always riding the country roads, and never on a highway.

Things changed when he moved to the urban university. Because of the dearth of parking spaces near his university apartment, he talked his dad into escorting him on his 300 mile drive to take the cycle to Seattle.

Since no law mandated the wearing of helmets, and he only drove around the campus vicinity, I guess my son decided it was safe to shelve his helmet. I can only guess, at that.

My son was aware that wearing a helmet was mandatory, as far as his parents were concerned, but since he lost the memory of the couple months that that he had the cycle on campus, he couldn't account for his decision, after the TBI.

He and a friend decided to loosen up for guitar-playing/singing session at one of their university apartments. Parking was always a scramble, and so they hopped his little cycle, which could always find a parking space.

It was a different story with his little Dodge Dart which could use up half a tankful of gas, just cruising around trying to find a vacant spot at the curb; he ditched the car and opted for the economical cycle.

On their way back from the six block drive to the supermarket, they were hit by a car heading through the intersection on 45th. I pray that my son never felt the hard landing on the pavement. He cracked his occipital bone, and his brain bounced back and forth inside his skull - front-to-back, and back-to-front, repeatedly.

Hard bony skull masses along the temporal lobes have a shearing effect on the tethers that normally stabilize the brain inside the skull, and it is let loose to ricochet to smithereens.

I crossed an iced covered mountain pass, and arrived two hours later, and stayed at my son's bedside for weeks, no more than a block away for three and a half weeks. I asked the neurosurgeon what he would do, when I was faced with "cut out some skull within thirty minutes, or die." And when the doc said "I'd operate." I agreed, ill prepared for an on-the-spot advocacy education, that continues, to this day.

Little did I know that even if my son woke out of what turned out to be a three-month long coma, it would get to the point where police came to my home with guns drawn.

Advocacy in Reading to a TBI Loved-one

Handbook for Families with Traumatic Brain Injury

My Massive TBI Advocacy Website

Soon after the first year post-TBI our local TBI Association sent family members to me, for coaching on how to achieve their goals for services for their brain-injured family members.

Honestly, for the first several years I was so immersed in climbing the mountains of service-access that it wasn't clear to me just how I achieved our goals.

Even when I was recruited to present a family advocacy training workshop at the brain injury rehabilitation program where my son was making admirable progress, it took concerted study of my files to get a firm grasp on the "Hows" of successful advocacy.

I created CogentAdvocate to serve novice TBI Advocates. CogentAdvocate

Tactile & Fun Calming Stress Relief

Tangle Therapy by Tangle
Tangle Therapy by Tangle

Tangle Creations Tangle Therapy twistable device is a new ergonomic approach to stress relief, for your brain-injured family member, as well as a manipulative for hand therapy.

Larger than the original tangles, use this fun way to get hand, joint and muscle therapy and calming stress relief all in one.


Visualize the Problems

My Cogent Advocate Story on Squidoo

Everywhere I looked for advocacy guidance after my son's TBI I was disappointed, so I paved my own path. My Advocacy

Learn what I did to access inpatient rehab for my son, and the strategies I used to keep him there past discharge dates.

It shocked me to have the rehab doctor directors tell me that because my son was so badly injured, he couldn't make speedy enough progress, to merit rehab.

What they meant, of course, was that the insurance company would not continue to pay, if my son could not meet their predetermined rate-of-progress. This sparked intense advocacy: because he needed rehab services so badly, he was denied them?

The Same Appointment Calendar I Used - small book fits in purse, while larger one is carried on its own

These Week At-A-Glance Appointment Calenders are invaluable for making notations regarding your family member's daily changes. Use them to jot down questions, to keep temperatures, measurements, eye-blinks,

I find that although phone notations are handy, nothing beats having a tactile paper Appointment Calendar and pen for notetaking. They are especially valuable because they show one whole week (or one day) when opened and spread out flat.

Be sure to get a spiral bound book. I favor the books with alphabetical phone/address tabs at the back. I find it is easier to have these permanent records, and I have mine, dating back from 1989 (the injury happened in mid-December 1988). Frequently, throughout the year I have need to access one or the other to double check my memory of specific problems, challenges, or progress.

AT-A-GLANCE Recycled Weekly Appointment Book, 5 x 8 Inches, Black, 2012 (70-075-05)
AT-A-GLANCE Recycled Weekly Appointment Book, 5 x 8 Inches, Black, 2012 (70-075-05)

Most of my appointment book calendars are 6" x 9," but the current book is 5" x 8". I like the larger size (middle of the three sizes shown below), for its versatility.

Since it fits easily in a purse or backpack, but I plan to get the 8" x 11" size next, since each year it's a little more difficult to write small enough to fit on the lines, and still be readable.


A Caring Wife's Story of her Husband's TBI

Sometimes, after a TBI, the world doesn't make any more sense. Everything a patient sees may look upside down or out of order, colorless, and pungent! Loving care and advocacy can make a big difference in bringing sense to the patient.

Lensmaster anticloud writes lovingly of her husband's plight, and of how his mother fought for him in what she calls "the first half of his amazing recovery - prior to their meeting.

Without advocates most persons who sustain a Traumatic Brain Injury are left to the whims of the health insurance industry. Doctors are limited by the claims' managers' decisions to-pay or not-to-pay! This young man's mother dedicated herself to her son's welfare at a time when he really needed it, and he flourished.

Here's her story: My Husband TBI

Knowing what I do about TBI I am totally amazed to reread through anticloud's story of how she didn't even meet her husband until after his injury.

It gives me hope for all the new TBIs incurred daily, including all those suffered by Vets. To think that they may thrive like anticloud's husband has, and enter into a wonderful marriage is a joyful thought.

Please return after reading anticloud's lens. Are you as moved by anticloud's story as I am. Share your thoughts.

A Touching Story

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      Randy 2 years ago

      Dear Ms Ellen McCarthy;If you are going to quote a Federal Regulation you need to quote the entire rgoluatien especially to those who are very familiar with Federal rgoluatiens like veterans or active military personal. We deal with rgoluatiens all of our lives and they are never written plan and simple as you have quoted. So I am going to help those who might take you for your word about what a service animal is and what their duties are, so that I don't misquote I have copied the rgoluatien and then posted it as follows:U.S. Department of JusticeCivil Rights DivisionDisability Rights SectionService AnimalsThe Department of Justice published revised final rgoluatiens implementing the Americans with Disabilities Act (ADA) for title II (State and local government services) and title III (public accommodations and commercial facilities) on September 15, 2010, in the Federal Register. These requirements, or rules, clarify and refine issues that have arisen over the past 20 years and contain new, and updated, requirements, including the 2010 Standards for Accessible Design (2010 Standards).OverviewThis publication provides guidance on the term “service animal” and the service animal provisions in the Department’s new rgoluatiens.Beginning on March 15, 2011, only dogs are recognized as service animals under titles II and III of the ADA.A service animal is a dog that is individually trained to do work or perform tasks for a person with a disability.Generally, title II and title III entities must permit service animals to accompany people with disabilities in all areas where members of the public are allowed to go.How “Service Animal” Is DefinedService animals are defined as dogs that are individually trained to do work or perform tasks for people with disabilities. Examples of such work or tasks include guiding people who are blind, alerting people who are deaf, pulling a wheelchair, alerting and protecting a person who is having a seizure, reminding a person with mental illness to take prescribed medications, calming a person with Post Traumatic Stress Disorder (PTSD) during an anxiety attack, or performing other duties. Service animals are working animals, not pets. The work or task a dog has been trained to provide must be directly related to the person’s disability. Dogs whose sole function is to provide comfort or emotional support do not qualify as service animals under the ADA.This definition does not affect or limit the broader definition of “assistance animal” under the Fair Housing Act or the broader

    A Doctor's TBI Story

    Over My Head: A Doctor's Own Story of Head Injury from the Inside Looking Out
    Over My Head: A Doctor's Own Story of Head Injury from the Inside Looking Out

    Locked inside a brain-injured head looking out at a challenging world is the premise of this extraordinary autobiography.

    Over My Head is an inspiring story of how one woman, a doctor, comes to terms with the loss of her identity and the courageous steps (and hilarious missteps) she takes while learning to rebuild her life.


    Coping with TBI is Really Tough for Family

    julyris p and d shares the early story of her mom's Traumatic Brain Injury in 2007. She was on a cycle when a truck ran into her, leaving her in a coma.

    The lensmaster was 26 at the time of her mother's accident and injury. Suddenly she was thrust into the position of parent to her parent.

    Who is really prepared for that? After my son's TBI his younger brother became his caregiver for several months - a huge challenge.

    My son was also on a cycle in the accident, and he, too, was helmetless, because the state law requiring the wearing of helmets had been repealed the year before the injury. julyris_p_and_d created a sharing place for families of TBI.

    Here it is: Relatives Coping With TBI

    photo credit via wickipedia commons.

    julyris p and d writes gently and openly of her experience of her mother's brain injury. She is generous in sharing.

    I am deeply touched by julyris_pand-d's rendition of her experience. How trying it would be to face such a change in a parent, during my twenties, I cannot imagine. I am grateful that she wrote.

    Please make another visit to her lens. Have you special thoughts gained from reading her lens?

    Her Mother's TBI Story

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      The Black & White of TBI for one Family

      huntnpeck's wife left the house to go to her job, and life for the family was turned on it's head! Brain injury left nothing untouched, for this husband, who writes their story.

      Successful advocacy resulted in exceptional care at a time of threatened stoppage. His wife's treatment took place in Texas, where my son's best TBI program also was hosted.

      Read the story at TBI by Huntnpeck

      photograph by Rehman T, Ali R, Tawil I, Yonas H at Tawil

      He could never have guessed what would transpire after his wife left home for her workday. This loving husband, huntnpeck, lets us into his family's story.

      I am so moved by knowing how he rearranged his life so that he could engage in active advocacy at the same time as he was learning about the full scope of his wife's injury.

      After reading Huntnpeck's story of his wife's TBI, and his dedication, please come back. Please share your thought and feelings about that story. Could you imagine doing this?

      A Unbelievable Surprise End to The Day

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        Spread TBI Awareness & Prevention

        The little drummer at the front of the picture is my older son, who sustained a massive Traumatic Brain Injury, when he was a 21-yr old senior in college. He will require a structured program for the rest of his life. His younger brother, in back, took a Quarter off from college to be his caregiver.

        Do You Know Anyone With a TBI?

        See results

        Encouragement from a TBI Spouse

        netventurer writes the story of his wife's injury, with concern and compassion.

        Most victims of Traumatic Brain Injury do without post-acute rehabilitation, unfortunately. And most do not have a powerful advocate to fight the necessary battles for services and other needs. Life after receiving a TBI presents it's own set of varying challenges.

        Story at braininjuryguide

        illustration credit alzheimers

        netventurer's Larry and Beth opened their lives for our view. How the story affects each one of us is particular to our own situations.

        Knowing that they have lived and learned TBI for over 40 years, and focus on giving, is heart warming to me.

        Please visit their lens and come back and share with us. What did you learn from this lensmaster netventurer's remarkable story?

        A Unique Experience

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          One Woman's Insight on her TBI

          The Smile on My Forehead: Memoir of My Life With a Brain Injury
          The Smile on My Forehead: Memoir of My Life With a Brain Injury

          This memoir starts like this:

          While driving west on Interstate 80 for my senior year at Brigham Young University, my car tumbled five times into the median. I was unconscious on impact, and I don't remember any part of the accident.

          My next clear memory is waking up on a hospital bed more than two months later, wondering where I was and why I had a metal Halo Brace drilled into my skull.


          TBI Writer Hones His Sense of Humor

          kingkurt2001 presents his philosophy, and his story about how his life is always affected by the fact that when he was only a child he suffered a TBI.

          The story exemplifies a common struggle for those with brain injuries, the ever present need to pick oneself up, day after day.

          kingkurt2001 demonstrates the value in retaining a sense of humor. KingKurt's story

          image credit:

          "Smiling can imply a sense of humour and a state of amusement, as in this painting of Falstaff by Eduard von Grützner." from wikipedia commons in the public domain.

          KingKurt2001 allows us entrance to his well developed life, as he presents his unique insights. This is a true gift.

          It always impresses me when a person who has grown up with the challenges of having sustained a childhood TBI writes for public education. Thanks KingKurt2001.

          After you visit his lens I hope you'll return to share your thoughts. Please share your reflections on this remarkable story.

          Life Long Experience With TBI

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            Please tell us something about yourself, and about any connections you have with TBI. We can improve this lens with your input.

            Sharing Builds Stronger Advocacy

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                Fay Favored 4 years ago from USA

                Unless you have gone through it, people really don't understand the effects and affects of TBI