ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

A Cogent Advocate for TBI Needs

Updated on February 20, 2015

Genesis of a Strengthening Voice - contains sensitive content

My TBI storiy began when my adult child suffered a Traumatic Brain Injury - before the internet era first permeated our lives - when I was just emerging from two-and-a-half decades as a rural homemaker and had been back in college for one year.

Without a teacher to model the steps of advocacy for me, I drew on my faith and country-honed strengths. God was my director, and I trusted Him to guide my acts towards preservation of my son's vital living skills.

Living in a rural area requires great physical strength and mental toughness, whether it is turning a mountain of fresh bursting tomatoes into homemade ketchup, or washing up another batch of fresh-laid eggs. It added up to refinement of my resilient core.

Soon I guessed that a former church member's teenage son's change in appearance and behavior had been due to TBI, but the prominent family kept quiet about it.

Then my friend's husband died of a traumatic brain injury that resulted from a long drop to a cement floor, but it wasn't until TBI hit my family that I even heard the term, and years more until the connection between these three incidents became clear to me.

I learned by trial and error, depending on my sense of justice, believing to my core that God had ordained the accident and, although this near-death of my oldest son had silenced my verbal prayer, intuition guided me to act out those prayers in advocacy for this son.

I reasoned that meeting my son's needs was not solely a family responsibility. He was in Agonal Respirations - right on the winter pavement - when the medics had arrived. Intubated, his body was forced to live without any family decision involved.

Since we all pay for our state's 911 Emergency Medical Systems through our taxes we are all responsible for the lives this remarkable system saves or forces to live, by providing extraordinary (at the time), sometimes lifelong, TBI services.

If we are all responsible for paying taxes that create the system then we all own the obligations to maintain more than the life of the body we saved, the life of the total person, and that includes more than housing and provision.

Ultimately, Life is Meaningful because we learn and grow and work, because we interact in relationship to others. But - on behalf of many persons living with traumatic brain injury - many families rationalize the low level of services their loved one receives with a "what you see is what you get" attitude, meaning (I guess) that the person's capabilities are only what they demonstrate on their own initiative or how they answer yes/no questions.

During the acute-care phase it became obvious to me that a TBI survivor may have much deeper abilities than the capacity to initiate actions, yet that can-or-can't-do-it designation often limits the individual's options --- because of the low level of expectations of treatment providers.

A massively brain injured person may never regain the ability to articulate their goals and initiate projects, without assistance, but the same person may be competent to read the instructions, pick up the pen, type into a keyboard, laugh with joy when s/he accomplishes a task that an assistant initiates with their cooperation. My story began 26 years ago.

Credits: All Photographs, All Artwork © Leslie Sinclair

Pentax K10 D Digital Camera for Pics Better than Mine - best way to go is to buy the body and the lens you want

At this point, in late 1988, still in the pre-cell phone era, as often as not I forgot to take a camera along with me. My drawing pad kept my visual record.

If the accident happened today I'd never be without a video camera and frequently would take the digital camera, but still, neither of them could capture the emotional content of marks on paper. If you are not a visual artist but you'd like to keep a visual journal today I would select one of these. My Pentax K10 D has that anti-shake function for smooth shots.

Pentax K10D 10.2MP Digital SLR Camera with Shake Reduction (Body Only)
Pentax K10D 10.2MP Digital SLR Camera with Shake Reduction (Body Only)

The Pentax K10D digital SLR camera features 10.2 effective megapixels and a host of advanced technologies including a Pentax-developed Shake Reduction (SR) system - that clinched the deal for me.

 
3rd Day
3rd Day

Shock Slowed Time Early On

onset of advocacy

That marathon surgery lasted eight full hours, and by the end I was confident my son would live. The frontal bone flaps were cut out, and frozen. That left the forehead area unprotected by skull bone. Put your hand on your brow bone, flat-out. Stretch your middle fingtertip to your lejft temple area. Spread your fingers, extending the index finger to above your hairline (imagine a high hairline).

Chances are you can't come close to touching the right temple area - clear to the right extension of the eye-socket, with the heel of your right hand. Now take your spread out hand down and look at it, and the area it encompasses. Now envision your missing skull piece - in the hospital freezer.

After a few weeks Nick gradually opened his eyes. You can watch the progress in my 1988, 1989 Blog illustrations at www.cogentadvocate.com.

Microscopic amounts of necrotic, or dead, tissue was excised during that initial major surgery. No one knew what that indicated for Nick. I vowed to do everything I could to maximize his chances of competence in as many areas possible.

So when someone told me that dipping Q-tips in common household extracts, like cinnamon, and orange, I bought new bottles in Seattle, and began a regular regimen of dipping and placing the little swab under his nose, even while he was unconscious. And, of course, I narrated some recollections from his childhood to tie the scent into his memory bank, each day.

OTs and PTs came on the scene early in recovery. First came the hand and foot splints that prevented the gross muscle contractions that sometimes further disabled survivors of Traumatic Brain Injury. Then, before I had imagined possible, the PT sat Nick on the side of the bed.

Nick made no response to anyone, but he sat there, tethered from his belt to the PT's hand. Soon the PT progressed to standing Nick, and then to transferring him to the wheelchair. Nick had said nothing at this time, not even when the PT began walking him, with my assistance or with the aid of a nurse or other therapist.

For two full months the injured brain could swell into the forehead space, It is startling for me, in hindsight, how calmly I withstood the trials of this period. When a friend inquired as to why the skull top wasn't removed, instead of just the forehead bone, I didn't reject her question. I asked the neurosurgeons the very same thing. Of course I was in deep shock, the initial icy shock compounded anew with each new gross insult to Nick's precarious life - surgeries, and codes.

One thing the staff never delivered, with the exception of the OT and the PT, was hope. How sad, when hope builds competence in family members. But medicos in the Acute Care phrase must be working on their own self-preservation, to not get their hopes up, or to seem too human to the families of their TBI surgeries.

Improvement was constant, although without my daily drawings during the deep coma stage I might have missed the signs. Before long Nick "qualified" for a tracheostomy - imagine that! qualifying, but it meant he had stabilized enough that the doctors gave him some chance of survival, so they made the incision in his throat and inserted a trach collar, from which he breathed, after the ventilator was withdrawn.

That trach collar was Nick's badge of progress. It meant he had graduated from ICU, to Acute Care floor. Rather than being excited that he didn't need so much care, I was frightened to think of him vulnerable in only an Acute Care room that looked like any other hospital room, although it was staffed exclusively by RNs. Evening I came to know some of them and found such confidence in their care.

Admit it, It's Hard & We Learn from Others - there's no such thing as a TBI plateau

TBI Hell: A Traumatic Brain Injury Really Sucks
TBI Hell: A Traumatic Brain Injury Really Sucks

Written by a survivor in earlier times of rehab this is a biting and unrefined true story of the experience from his own point of view. He also publishes a later volume that covers subsequent experiences.

It's worth a read, to get a common perspective otherwise unavailable to most readers.

 

Would you have approved the skull removal surgery?

See results
Christmas 1988
Christmas 1988

The Tools I Used to do the ICU Drawings

Since I was already studying art I had the drawing implements I needed, but since my son's hospitalization took place in a city 110 miles from home, I needed additional drawing things. My other son and daughter picked up some woodless all-graphite drawing pencils at a local shop, for me. I include all this information here to encourage family members of those hospitalized with TBI to give it a try - to doodle, scribble, erase parts, draw what you see, or draw what you feel. Be sure to date each day's drawing.

1. Pro Art Woodless Graphite Pencil Set has a variety of degrees of lead softness in 4 tubby pencils. I love these pencils because they are larger than a slim wood pencil, so they fit better in the hand. The "point" makes a very broad mark, depending on how low you lay it, to the paper, and it makes finer marks when held vertically.

2. Strathmore 300 Series Bristol Board Pad is fine for laptop or overbed tabletop drawing. This was my tablet of choice because the paper is thick and smooth and unlikely to crease or wrinkle. It stays firm and flat for carrying.

3. Design Kneaded Rubber Erasers. There's no eraser that beats a kneaded rubber eraser for versatility, and I want to emphasize the tactile nature of this eraser. It picks up the graphite on the outside of the ball, wedge, cubic shape into which you knead it, and further easy kneading feeds the black marks to the inside, all of this leaving your hands clean. Touch the inside of your palm and you can imagine the pleasant sensation of squeezing this little rubber eraser, also to release some strain It's worth its weight in worry.

4. Creative Studio Art to Go Pencil Set with soft bag and sharpener and soft bag. If I didn't already have many graphite pencils I would want this set because it has such a range of hardness in the leads, and the sharpener will come in handy. Everything fits in the slim bag.

5. Drawing and Sketching Pencil Set & Drawing Pad In Zippered Carrying Case contains a series of pencils that cover the gamut of hardness to softness. After my first trip back home (3 weeks post-injury) I packed up several of my graphite drawing pencils, but if you don't already have a selection, this is a good choice, since it all comes in one packet.

Drawing and Sketching Pencil Set In Zippered Carrying Case
Drawing and Sketching Pencil Set In Zippered Carrying Case

For easy of use and because he pad is small, I think this is tops for giving to the parent, wife, child or loved-one of a person with TBI.

Keeping the pencils inside the bag prevents them from marking up other items inside the backpack. A simple thing that prevents needless hassle.

 

Bob Woodruff's Iraqi War TBI Story

Journalist, Bob Woodruff, was riding in an open tank down a Baghdad street when the tank hit an unidentified explosive device and he suffered a massive Traumatic Brain Injury. Woodruff had skull sections removed while he was in a coma. Bravely, he and his wife Lee have documented his road to recovery. He once again makes documentaries and reports news stories and commentaries.

shrunken forehead shock
shrunken forehead shock

What We Don't Want Others to See

protecting them can hurt us

Those long weeks when no skull piece protected my son's brain under his forehead skin must have chopped years off my life. I remember climbing the five flights of stairs from the Cafeteria to the Acute Care floor, wondering where the food tray in my hands came from. Others kept on with their weekly routines and I did a solitary-soldier vigil, carrying on for everyone.

No one asked me to do so. I couldn't stay away because I believed that I had a gift to give Nick, and narrated my life and beliefs to him, praying aloud for his recovery. I think that hearing the spoken word, conversations, and laughter in his room provided nurture he couldn't find on a radio station.

I shuddered and nearly gagged when a nurse applied pressure to Nick's forehead, pushing I thought, deeply, feeling his brain. Whatever for? I didn't ask, but I was horrified.

Adult Medical Alert ID Bracelets - even a jelly bracelet flash drive wristband

Choose one of these specialized bracelets for yourself and include only the information you wish to be available in case of accident.

or, include phone numbers, address, and/or health records for brain-injured individuals whose memories may be challenged at such a time as an emergency, or when they have wandered from the home.

These bracelets ensure that the fact that the wearer lives with some challenges caused by brain injury can be invaluable.

Vital Id Adult Adjustable Medical Bracelet (Charcoal)
Vital Id Adult Adjustable Medical Bracelet (Charcoal)

Eliminate need for engraving with this high quality men's sport bracelet. Comfortable and easy to store life-saving information inside. Info can be rewritten, as need changes, and list is retained inside the wristband.

Securely store health warnings and complete medication list.

 

Where would you place a family member who suffered a TBI?

See results

How Would You Handle A Tough Situation?

What would you do if your TBI loved one threatened you or neighbors?

See results

Experiment with Simple Art Techniques - CogentAdvocate picks a few kits

It can only help to experiment with your loved one, just to see how s/he will respond. If you aren't antsy, likely s/he won't be either. Set an exploratory and fun tone and who knows - you might find that this is your favorite time of day.

I selected very simple activities, with the idea that we don't want to tax a person with TBI. Instead we want to intrigue them. That's why the first kit uses nothing but found objects, like leaves, or keys, the paper that is included, a piece of acrylic, also included, and the good old sun.

The mosaic poster kit may require the hands/fingers of yourself to do what your loved one asks, for each piece. This is a friendly together-activity. Either follow the suggested ideas or reach out on your own.

The Scratch Magic kit experiments with shapes and scratching the black paint off to reveal colors beneath. Even if you do no more than write names with the scratch stylus it will be fun. You might talk about surprises, and how it feels to see an unexpected color show up.

What could be a better memory-jogger than to help your loved one with a TBI to recreate an abbreviated version of their story! Give it a try, because you'll receive a bound book in return.

Illustory Make-A-Book Kit
Illustory Make-A-Book Kit

I like the idea of using a ready-made kit to help a person with TBI to create an object that becomes a visual and textual story of their life.

 

Jenga is a Marvelous Product

A family member showed up at the It remains one of his favorite games 22 years after the TBI. It enhances eye and hand coordination and manipulation, problem solving and memory skills.

Wood was a favorite material for my son to use. I remember the time he sliced a piece of a special dried tree, polished it and gave it to his grandma for a gift. Everyone in the family will find interacting with their loved one while playing Jenga to be rewarding.

Jenga Classic Game
Jenga Classic Game

In addition to this classic version, Amazon sells many variations.

 

I Appreciate Your Comments - Please let me know how my story affects you

    0 of 8192 characters used
    Post Comment

    • lesliesinclair profile image
      Author

      lesliesinclair 3 years ago

      @smine27: It is so encouraging to read a comment like yours, and God willing, I'll stash it in my pocket as a reminder to pull out during the next challenge.

    • smine27 profile image

      Shinichi Mine 3 years ago from Tokyo, Japan

      Thank you so much for sharing your story with us. You are an incredible person and reading your various lenses is always an inspiration to me. Thank you

    • amosvee profile image

      amosvee 4 years ago

      This story is awe-inspiring...as in, you are awesome. I hope you have a golden lariat and awesome boots, because I think you might be Wonder Woman.

    • profile image

      talbottbruce 4 years ago

      wow

    • profile image

      anonymous 4 years ago

      What a powerful story. I work with individuals with TBI, and others with developmental disabilities. It is a hard transition to be there for someone who has lost so much of their former abilities. God bless you for being there for your son and I hope he is doing well.

    • goldenrulecomics profile image

      goldenrulecomics 4 years ago

      What an important story. I hope it gives comfort to others who may be in similar situations to you.

    • profile image

      dream1983 5 years ago

      Very nice lens, interesting reading!

    • profile image

      sheezie77 5 years ago

      Great lens!Well done!

    • delia-delia profile image

      Delia 5 years ago

      Wow this story brought back some memories of a similar situation we had a few years ago, although not a family member but close to it, we experience some of the things mentioned here..although he was 72 coming out of the coma to succumb to pneumonia at the rest-home.

      God Bless you for all your strength, and I am deeply sorry this happened to your son....I can't even imaging the pain in your heart.

    • waldenthreenet profile image

      waldenthreenet 5 years ago

      Brain Injury is a very important health care topic. What are the topic 3 reasons for Brain Injury in America ? Is Automobile accident among the top three ? Congrads on your Squidoo Level. Am going for my next. Conversations helps both ways. Thanks.

    • profile image

      Buchamar 5 years ago

      Some things are so hard but info helps a lot!

      Great info! Thank you!

      I feature iPad educational apps in Squidoo - Come Visit!

    • Lee Hansen profile image

      Lee Hansen 5 years ago from Vermont

      I met a young man who had a TBI after falling 40ft through the roof of a circus tent. He was 24 at the time he fell; I met him when he was 29. He knew he and cognitive and other deficits due to the brain injuries but he struggled to manage them. He was my on-off roommate for 7 years. His mother was a tiger during his 13 day coma and hospitalization, then he was on his own after discharge from rehab. He credits me and his doctors at Mass General with helping him work to his high-functioning level today, 23 years after the fall. God bless you and your son and family. You are so right on about the lack of understanding up to now re: TBI victims and their needs and their family's needs. We have so many Iraq and Afghanistan veterans with TBI now, plus Bob Woodward, to bring the care and issues to the forefront. Take care ... and make this sotry-journey into a book or a film. That's what The Learning Man (Alan Wilbar) is doing to share his story.

    • Charlino99 profile image

      Tonie Cook 5 years ago from USA

      Four years ago my Father fell off a 12' embankment on his head at the age of 74. He fell again a little over a year ago, and hit his head again.

      There is no explanation as to how or why some medical procedures are deemed necessary when a loved one has suffered a serious head trauma. Also, you are quite right. The doctors were more concerned for my dad's physical health and survival (to prevent compounding health problems like pneumonia), than they were about the head that hit pavement. He received physical therapy, cognitive therapy was not an option. Medicating an elderly man with broken bones, headaches, sleepwalking from the pain killers, etc. The result is my once active father's short term memory is severely lacking, and he hasn't read a paper since the fall. When a loved one has suffered a severe head injury and body injuries, I've learned how one can become consumed by a confusing healing process, and how the one(s) closest to them are often the targets of their frustration.

      Thank you for sharing your experience here, and find comfort in knowing that you are not alone.

    • lesliesinclair profile image
      Author

      lesliesinclair 5 years ago

      @chezchazz: I have goosebumps from reading your comments. May God bless your wife; my son also has serious vision problems, and it is very trying. It took me about four years to get the courage to make this lens, and the website also, and now I want to share them with everyone. I play to build a nonprofit to meet some of his needs, and those of some other TBI men. Sincere thanks.

    • lesliesinclair profile image
      Author

      lesliesinclair 5 years ago

      @evelynsaenz1: Thank you Evelyn. Me too, falling through the ins. hoops to get a myelogram - even for something serious like that we have to struggle so hard. Good luck with your son. This lens covers part of the first year post TBI and I never considered that the fights would continue after nearly 23 years. Your words raise my hope.

    • Heather426 profile image

      Heather Burns 5 years ago from Wexford, Ireland

      Wow, unbelievable story. Great job of telling it.

    • profile image

      anonymous 5 years ago

      An informative lens. Thanks you.

    • chezchazz profile image

      Chazz 5 years ago from New York

      I want to add my personal thank you for this most important and very moving lens. My wife suffers from TBI, although fortunately not as bad as your son's. She has vision problems and seizures among other symptoms and it has been 6 years since her injury. I want to add my blessings to this lens along with my deepest gratitude and empathy. Your lens is featured on "WIng-ing it on Squidoo," our tribute page to some of the best lenses we've found on squidoo.

    • profile image

      Joan4 5 years ago

      You are such an awesome mom and your story should make us all sit up and take notice. What a frightening experience and frustrating too. Blessed by this squidangel.

    • Monika Weise profile image

      Monika Weise 5 years ago from Indianapolis, IN USA

      What a moving lens. I read every word, and I can't tell you how much I admire you. Bravo!

    • evelynsaenz1 profile image

      Evelyn Saenz 5 years ago from Royalton

      Wow! I can't imagine going through what you have been through. What heroic lengths you have gone through to advocate for your son. I just spent the past couple of days fighting the insurance company and doctor's office to get treatment for my son. All he needed was routine, but each doctor visit requires hours of phone calls, pleading for information. How do the procedures need to be written up in order for the insurance company to agree to pay?

      This lens is one of the very best lenses I have ever read. Squid Blessed and recommended for LOTD!