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TBI Speaks to the Senate RE: my Son's Traumatic Brain Injury

Updated on March 15, 2014

Trauma Story From the Inside-Out

A Traumatic Brain Injury doesn't just whack! the victim - it gets the whole family - and unless one member dons the garb of Speaker-for-the-comatose-patient, no one speaks to the Senate, in such a case.

I rose to the occasion, and sat down only for a couple cancers. I'm not alone here, scads of family members have spoken out on their loved ones' behalf.

Yes, it does raise some people's ire, but we must do so, because we are not in it for ourselves. This story is the short version of one year of my life.

Sure, I'd spoken out a lot within the house, but never in the Peoples' House, still I wasn't going to that Chamber this time. I had made acquaintance with the Washington State Brain Injury Association (then called the Washington State Head Injury Foundation, or WASHIF) when the WASHIF President's son and mine shared a rehab room in the coma-stimulation facility in Seattle.

I shared my art making activities in my 21-year old son's ICU and Acute Care and rehabilitation rooms with her, and drew the attention of the WASHIF Executive Director and their Board the following year.

Soon the Exec solicited my participation in the 1990 Washington State Senate Healthcare Committee Hearings regarding legislation to require the wearing of motorcycle helmets..

I was rarin' to go, to get my story out where it could make something happen for people who might sustain TBIs. I hoped to prevent such horrendous injuries for individuals who made the mistake of riding motorcycles unseen, by changing the law.

Like much of the world at large at that time, the aftermath of any sort of brain injury was only a foggy concept for me, akin to the strange new world of the personal computer I read about in Bill Gate's pre-internet revolution column in the Seattle Times newspaper back in the 1980s.

photo credits: ALL Photographs © Leslie Sinclair

Do You Think We Can Change the Law?

Do you know enough about TBI to give your testimony?

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Write Your Story on a Dedicated Laptop

Toshiba NB505-N508BL 10.1-Inch Netbook (Blue)
Toshiba NB505-N508BL 10.1-Inch Netbook (Blue)

Our stories are powerful. Protect yours, and feel free to write your heart out on a laptop dedicated to your TBI needs. It weighs less and costs less than the one I use and love, below.

 
Apple MacBook Pro MD212LL/A 13-Inch Laptop with Retina Display (OLD VERSION)
Apple MacBook Pro MD212LL/A 13-Inch Laptop with Retina Display (OLD VERSION)

This is what I now use (the 15.4" model) to document my TBI work. All advocacy is a strain and having the relief of the super resolution in this laptop is a huge benefit to my work.

 

A Motorcycle Helmet for the Avid Rider - always ensure correct fit

Icon Alliance Motorcycle Helmet - White X-Large
Icon Alliance Motorcycle Helmet - White X-Large

I think white shows up better than black against the backdrop of the roadway and cars. A full-head and neck helmet provides the best protection, to my mind.

 

Protective Mesh Motorcycle Jackets - TBIspeaksToTheSenate

Even after 24 years it is difficult to face the fact that people continue to ride motorcycles, without helmets, and in scanty clothing. At least, the minimum is a hearty fitting helmet and proper jacket and pants that will provide some protection, at least, to the limbs in the event of a crash. Check out the options to protect yourself and your loved ones.

PRO MESH MOTORCYCLE JACKET RAIN WATERPROOF WHITE XL
PRO MESH MOTORCYCLE JACKET RAIN WATERPROOF WHITE XL

I find this jacket superior because the black/white design is a standout, and because it is waterproof. Keep your rider safe.

 

Constant Companion Kindle for TBI Books

Back at the time of the injury I began keeping daily appointment calendars each year. I still keep them because I find it easy to be able to flip through pages, back and forth, to find my notes from certain events.

But today I would also keep my kindle close at hand so I could quickly download books about TBI and rehab. I have an older Kindle Touch, but do intend to get the Paperwhite 6 because it has so many new features, not the least of which is the built-in light.

Queen Isabella
Queen Isabella

Text of the Motorcycle Helmet Bill Testimony

everyone cried and then they passed the legislation

"My name is Leslie Sinclair. My then-21 year old son was a senior at the U of W, with a GPA of 3.6 in Economics and Business. He was riding a motorcycle in the University District of Seattle on December 15, 1988.

Neither he nor his passenger were wearing a helmet. As he entered the intersection at 45th & Brooklyn, an oncoming car made an illegal left turn directly in front of Nick. Both riders were thrown into the air.

My son landed on the back of his head, fracturing his skull, causing immediate loss of consciousness and near death. He survived extraordinary surgical intervention - the removal of the front part of his skull for two months. Had he been wearing a helmet, he would have survived with only minor injuries (slow moving vehicles).

"[He] is the tragic victim, but he is not the only victim; his family cannot escape the repercussions of his Traumatic Brain Injury, 3 month coma, physical and cognitive impairments. Nick was a 21-yr old adult; my responsibilities had switched from mothering to friendship. The impact of this crisis on my life was: I was immediately catapulted into the role of full-time mother-advocate.

I had been in the process of divorcing his father; I was a full-time art student at Central Washington University. I had made serious, positive choices and changes in my life the year before the accident. Circumstances over which I had no control dictated the necessity of my deciding life-or-death issues.

"I am constantly challenged by attempting to tap into a rehabilitation system that does not exist, except for the privileged few. Advances in medical technology allow us to save lives, which would have been lost a few years ago, only to abandon those victims once their experimental and economic value is exhausted.

"From the beginning I totally involved myself in his care. I commuted weekly from Ellensburg to Seattle, 5 days on and 2 days off. I studied texts, State Head Injury Foundation literature, educating myself in coma stimulation and cognitive rehabilitation.

I was hiss primary advocate and caregiver, present when he said his first words, made his first purposeful movements. I was committed to helping him maximize his potential as a survivor of Traumatic Brain Injury.

"On Jan. 17 he was evaluated and accepted as a patient likely to benefit from a rehab facility that specialized in stimulating patients on the low end of the Rancho Los Amigo Coma Scale. It took two months of wrangling with the insurance company to finally get him admitted, and for them to accept financial responsibility.

I spoke repeatedly to the claims manager, fielding such questions as: "Can you prove to me that your son was not on his way to commit a felony?" Before this accident I had no idea that it was necessary to hire an attorney to collect the medical insurance benefits to which a covered party was entitled.

"When I consented to the life-saving surgery I thought there was a continuous flow from ICU through Community Re-entry, with NEED the prerequisite. Rehab facilities are kept in business by private insurance companies. There is no system for rehab other than that stipulated by the insurance companies. The patient must maintain an arbitrarily determined rate of progress or the company will refuse to pay. The rehab center must be paid or they will go out of business.

The regaining of conscious awareness does not follow any schedule. It does not know anything about financial management. It is simply the sprouting of new life, reaching out for contact with the world it once knew. It needs continuous confident encouragement, at its own rate.

"I received the rude slap of awakening to the realities of insurance coverage. It means the insurance companies cover themselves if they can help without suffering profit-loss. So, though my son had half a million dollars of insurance coverage, his cognitive rehabilitation therapies, once he rained physical mobility, were terminated. I was faced with another dilemma.

He could be placed in a nursing home where he would be sedated and restrained. Any hope of future cognitive recovery would end; or we could try to meet his enormous needs at home. I was out of money and physically and emotionally drained. His dad was willing to attempt to care for him out of love, rather than expertise. We had no alternative.

"In September I took my son to live with his dad; he was scheduled to spend every-other weekend in my apartment. By this time he was ambulatory. On the second visit to me my world turned upside-down.

Because his appetite is insatiable, and my living room and kitchen are one, I could not remove him from the food source. I was forced to enclose the refrigerator and food cupboards in bicycle cables and locks. His hunger drive is powerful and he was able to stretch the cable, allowing access to unlimited eating.

"I took the food to my brother's home. My son became increasingly agitated and verbally abusive, aware that I had removed the food, he directed his words and actions at me. When I sought refuge in the bathroom, this previously gentle survivor pounded on the door in rage.

"This behavior escalated to the point where it involved injury to a neighbor, and continued, causing me to seek professional advice. I wanted to get a sedative for him to break the anger-aggression cycle. I worried about his four hour drive back home with his brother that evening.

"My son's cognition continues to improve; his insatiable appetite, due to injury of the hypothalamus has caused weight gain of 80# in six months; he has flashes of anger and aggression.

I cannot come between him and food; therefore cannot have him in my solitary care. Absurdly, he is barred from further rehab by the very behavior problems for which he needs rehabilitation.

"I struggle with the system that encouraged me to give consent for the radical surgery that allowed my son to live, but makes NO provision for meeting his continuing need. If he had been wearing a helmet I would not face this daily conflict.

The law requires persons riding in vehicles to wear seat belts. It is absurd to allow physically vulnerable motorcycle riders to go without helmets."

photo credit: © 1991 by Leslie Sinclair

Rehabilitation From The Experts

The Brain Injury Workbook: Exercises for Cognitive Rehabilitation (Speechmark Practical Therapy Manual)
The Brain Injury Workbook: Exercises for Cognitive Rehabilitation (Speechmark Practical Therapy Manual)

Terrific reviews will convince any advocate of the value of this book for helping their brain-injured loved one.

 

Survivor and Family all need to Reclaim Life

Reclaiming Your Life "living with the long term effects of a concussion"
Reclaiming Your Life "living with the long term effects of a concussion"

Educational TBI video helps everyone address needs and problems that follow discharge from rehab.

 

Who Speaks About TBI Effects on Family

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Tetris Blocks Provide Visual Stimulation

Simply manipulating the colorful shaped blocks provides visual stimulation and opportunities to talk to your brain injured loved one. Colors remind us of memories, foods, activities, places, clothing, and those memories can be sparked by holding and touching the blocks with their many angles.

Tetris  Cube - Large
Tetris Cube - Large

While I play Tetris online (began during vision therapy), this cube is a new one to me. If my son lived nearby I would like to use this as part of his regular activity schedule.

 
Groovin Blocks - Nintendo Wii
Groovin Blocks - Nintendo Wii

This game incorporates music and hand work so it engages more parts of the brain. Music is a valuable stimulus to my son and it adds a jubilant tone to the activity.

 

Strongest Advocacy Skills

What is your highest skill that accomplishes your goals for TBI help?

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Knowing that this article contains subject matter that is challenging, please share your reflections with me

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    • lesliesinclair profile image
      Author

      lesliesinclair 4 years ago

      @Erin Mellor: I'm with you there, it would make me so happy if no one need be in that position again.

    • Erin Mellor profile image

      Erin Mellor 4 years ago from Europe

      Where I live motorcycle helmets are mandatory, and I always wore one, now I'm a push-cyclist I still wear a helmet, it's an essential part getting on the road. I don't know how I'd feel if I was in a position of being an advocate, I guess no-one does until the situation presents itself. I sincerely hope I never have to make those decisions for my family.

    • lesliesinclair profile image
      Author

      lesliesinclair 4 years ago

      @norma-holt: This article is as much about encouraging others whose family members have suffered TBI, to take actions that are very challenging and draining, as it is about educating others who are impatient to get-to-the-point.

    • norma-holt profile image

      norma-holt 4 years ago

      I can understand why you want to put everything into this story but it is way too long and tedious. Try editing and cutting out the waffle. There is a lot that doesn't need to be explained and remember less is more. That way more people will read it and get the message. Hugs

    • profile image

      anonymous 4 years ago

      This is great information, I like them very much. :)

    • BLemley profile image

      Beverly Lemley 4 years ago from Raleigh, NC

      Thank you for getting the word out about TBI and it changing lives. Folks need to be aware we're not invincible, and need to take responsibility for ourselves, no matter the law. Even though the healthcare folks at our hospital blood donor bus said I could "safely" give blood, even though my BP was 88/66, I should have known better, and excused myself. I was lucky to make it home before I passed out, and I was lucky I didn't throw up the coke I had (they did not have any GF snacks) while I was passed out for 20 minutes face down, God has given me a second chance. Along with the changes I have experienced, thank God, I have lost my fear of speaking up, and I have no more headaches. So I am definitely blessed. I have downsides from the injury, such as not being able to focus and stay attentive to complete tasks, and not being able to walk looking down too well. Today marks the six month mark, and the neurologist said it could take six months. I am not back to where I was before, but I have to look at the positives, which are blessings. I don't think life will ever be the same, but this is the new "me" and maybe God has a new purpose for me now. God bless you and your family B : )

    • kathysart profile image

      kathysart 5 years ago

      You have given me an awakening to the meaning of love. Thank you for that sweet friend.

    • julescorriere profile image

      Jules Corriere 5 years ago from Jonesborough TN

      Thank you for sharing your story. The more people are enlightened by stories like these, the more we become aware of things that need to be done to help.

    • profile image

      anonymous 6 years ago

      I don't have words....admiring you...

    • Lee Hansen profile image

      Lee Hansen 6 years ago from Vermont

      TBI is a family disaster; not many people understand that brain injuries (head injuries) are not fully recoverable. Most, not few, victims have lifelong issues to manage or try to live with. A head injury/brain injury causes PERMANENT damage to the victim and his family, regardless of how the injury was acuired. We need more help to prevent insurance industry abuse when it comes to brain injuries.

    • nebby profile image

      nebby 6 years ago from USA

      I have so much to say on the subject, but your story has told it in a much more touching way.

      Fantastic lens & love the way you wove your personal story while also adding quotes from others.