Becoming the Healer: The Miracle of Brain Injury

Becoming

the Healer

The Miracle of Brain Injury

Deborah L. Schlag

Copyright © 2012 by Deborah L. Schlag

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

ISBN: 978-1-4525-5881-3 (sc)

ISBN: 978-1-4525-5880-6 (e)

ISBN: 978-1-4525-5879-0 (hc)

Library of Congress Control Number: 2012917366

Balboa Press books may be ordered through booksellers or by contacting:

Balboa Press

A Division of Hay House

1663 Liberty Drive

Bloomington, IN 47403

www.balboapress.com

1-(877) 407-4847

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Balboa Press rev. date: 10/02/12

Contents

Forward

Get The Facts I’ll Bet You Didn’t Know

It’s Living In My House And I Don’t Know What It Is

Getting To Know Me: Life Before Brain Injury

I’m not okay I Prayed For This?

Emergency Room Help… . Or Is It?

They’re Crawling Out Of The Woodwork I Don’t Deserve This

I’m Not the Parent Anymore Relationships Change

Doctors Everyone Has A Specialty

I’m So Afraid I Can’t Stop Laughing

Discoveries In The Fog

Nutrition and Exercise Healing From The Inside

Eenie, Meanie, Miney, Moe Oh, No!

Dolphins

Insurance Playing the Game

Dr. Jekyll and Dr. Hyde In Person

Are We Ever Going To Unpack The Kitchen?

Thinking Outside The Box

Taking On Chores Reclaiming My Life

Reaching Out To Make A Difference

Becoming The Healer

Hope Hope That Ignites Your Heart

Lance’s View On Living With The Injured

Through The Eyes of Others

Educate Yourself…  Future Reading

Acknowledgements

All that I have…

All that I am . . .

Has been given as a gift . . .

And To God Be the Glory!!!!

"There are only two ways

to live your life.

One

as though

nothing is a miracle.

The other is

as if everything is."

Albert Einstein

"And the day came

when the risk to remain

tight in a bud was

more painful than the

risk it took to

blossom."

Anisis Nin

Forward

On January 22, 2003 I was in a car accident resulting in Traumatic Brain Injury (TBI). Having this injury placed me right in the middle of learning about brain injuries and healing, which led to the discovery of the undetected, undiagnosed brain injury of my son. We’ll get into that matter later in this narrative. Throughout the healing process I experienced so many amazing new things. I was in awe at the human body, the many possibilities of the way the body reacts to what causes imbalances and the many paradigms of healing that could be used to restore health. We all go through the basic health classes during school. We think we know how to take care of ourselves and our families; I thought I did a pretty good job. However, I never realized how much I didn’t know about taking care of anyone or how much I needed to learn.

I want to share my story with you, passing on the information that I have found to help you in your recovery or the recovery of someone you know, whether it be brain injury or anything else. I also want to share with you hope—hope that no matter what you’re going through there are blessings embedded within the experience that need to be discovered.

My total being was affected from this incident: it has taken away from each area of my life and given in each area as well; mentally, socially, physically, financially, and spiritually. Mentally my mind changed, the way I think and understand is different. I had to rethink and relearn many things such as skills lost from the injury as well as develop new ways to accomplish daily activities. My mental processing was slower. Multitasking wasn’t even on my radar for a long time, although I am much better at both than I was for the first five years; I was asleep all the time. With the few exceptions of others who helped us, doctors and family were the only ones I saw. They became my main support in that they were my only social interaction and the ones who tried to understand my situation.

Physically, I had been in pretty good shape before this and was told after the accident what a benefit that was. Sometimes, I thought, If this is good; I don’t want to know what isn’t.

Financially, the start was loss of pay from work that could not be completed except by passing the work on to others, leading to the loss of my business. Eventually, financial impacts included topping out insurance and draining the family finances.

Spiritually I believe that God has been with me—No!—before me, on this whole journey. He showed me from the beginning I was not alone, reassuring me I would be okay. I believe everything has its purpose and it has been revealed to me throughout this experience that all things can be used for good. It is His grace, hope and love—along with that of my family and the many people that have helped me—that have gotten me through this experience.

Please take into consideration that the things I tell you are things that worked for me. I am not one to give up easily. If one thing doesn’t work I will try and change to find one that does or combine several things to achieve my goals. I will back up, regroup, and start over. What is best for you and your situation will be completely different, but I hope to help you by sharing the knowledge I have gained.

Each brain injury is unique in itself. No two injuries are exactly alike, unlike other illnesses that have set symptoms, procedures for recovery and known recovery times. The combination and level of symptoms is unbelievably complex. Later I will illustrate this by describing some differences between my brain injury and my son’s. Healing can also be difficult. There are many doctors out there that don’t understand or know brain injury. My advice is to search until you find a great doctor, one with extensive experience in the specialized area of head injuries and whom you can relate well to and respect. You need a relationship built on trust with a doctor that will take the time to help you. You need to be confident your doctor will answer your questions or send you to someone that can. (You wouldn’t hire or call back an electrician if he made an appointment, kept you waiting, took a ten minute look and left without spending time to explain to you—at a level you could understand—what was going on, what options were available to fix the problem the best way. Or one who would only make repairs the way they did 20 years ago because that’s all he was interested in, even if you provided information on other options.)

There are many modalities that I had never heard of or that sounded pretty far out there to me before my injury. Now I realize that you don’t have to understand exactly how something works for it to help you. I believe western medicine is great for emergency type situations in which there is no choice but to operate or utilize specialized medications to keep the patient alive and stable. My first choice in non-emergency situations has always been to try things that rely on a less invasive route, get to the root of the problem instead of covering it up. I also chose to do without surgery after the accident because if my brain wasn’t working correctly because of the injury it may not have been a good time to put it to sleep or give it drugs. The end goal is to get better, no matter what the injury is. Try to look at things with an open mind. An open mind changes everything for the better.

There are other books out there that go deeper medically. My goal is to share from my own experience and keep it simple. Sometimes the medical jargon was confusing: I found that at times I would think I understood something only to realize later that what they were talking about or what I read wasn’t how I understood it. It had a different meaning when I finally understood it through experience. Weeks later it would dawn on me, ooh, now I get it! I also had different levels of getting it or getting it in parts. I continued to study and question, leading me to a place of I must learn this to help myself and others. I will provide an index of resources at the end of this book, things I have used that may be helpful to you as well. These resources can also be a starting point for your own research.

This book is in large bold print, spaced so that it will be easier to read for those with brain injuries before they have fully recovered. If reading is still a problem because of vision or processing issues you might try limiting what you see at any given time. The method I found was to cover up one page while reading the other. I did this by using a paper or cloth to cover the words on the page I wasn’t reading. I also would place my arm across the pages and move it down as I read, seeing only a few lines at a time. This helped me tremendously when I started reading. Of course you could always have someone read to you, as well.

Consider this: you will never get back to the normal you were before your injury. You will have a new normal, one that can be better with all that you have learned. I think I am better because of it. I am doing things now I never dreamed of before. My prayer is that as you read my story you will learn from my experience and be inspired during your own.

"The smallest fact is

a window through which the infinite

may be seen."

Aldous Leonard Huxley

Get The Facts I’ll Bet You Didn’t Know

If you are reading this book probably you or someone you know has had some type of brain injury. People who have suffered similar loss or hardship have immediate bonding and understanding. I hope you feel the bond we share as people who have undergone experiences few others will know. I hope my story helps you. Websites and books you read may have statistics that vary depending on when the information was gathered and printed. I have tried to find the most current for you.

In the United States alone, the statistics state that every 23 seconds someone is diagnosed with traumatic brain injury (TBI). You might also hear it referred to as mild traumatic brain injury (MTBI), closed head injury, head trauma or severe concussion. That total is over 2 million injuries per year or 100 per every 100,000, which is more than those diagnosed with breast cancer, HIV/aids, spinal cord injury, and multiple sclerosis combined. This comes with an estimated cost of $56.3 billion per year; yet most people know little about this type injury; fewer still understand it. Of those 2 million each year, 52,000 will die, and 70,000-90,000 per year will have lifelong impairment which also includes dramatic change in the course of one’s individual life, profound disruption of family, and enormous loss of income and earning potential. (National Institutes of Health at nih.gov, Brain Injury Association of America at biausa.org, Centers for Disease Control and Prevention at cdc.gov). TBI is significantly under diagnosed by the medical community. In many cases the victim does not even realize that help is needed. The numbers of brain injuries have increased significantly in recent years and will continue to rise with the ever growing population and fast pace of our lives.

You won’t find TBI, MTBI, or closed head injury in the dictionary, although they are used interchangeably. You will, however, find concussion. What is concussion? The Merriam-Webster online definition is as follows:

Stunning, damaging or shattering effect from a hard blow; especially a jarring injury of the brain resulting in disturbance of cerebral functions. In addition, a mild brain injury has been defined as being a brief change in mental status and a severe injury affects the patient for an extended period of time.

Signs and symptoms can be subtle and may not appear until days or weeks following injury. This period of delay for the onset of symptoms can be longer for children (Nih.org Consensus Development Statement October 26, 1998). Brain injury can cause epilepsy and/or increased risk of Alzheimer’s disease, Parkinson’s disease, and other diseases that are prevalent with age.

Of the cases reported, 50% are the result of a car or bike accident, 20% from some kind of violence, 21% from falls, and 9% reported from sports accidents (300,000 a year per cdc.gov). Injuries from sports are not reported 90% of the time, so the sports injury is actually much higher (thebrainmatters.org 2005 and NIH Consensus Development Conference Statement October 26, 1998). In fact, in 1904, United States President Theodore Roosevelt threatened to outlaw football after 19 college players were killed or paralyzed from brain or spinal cord injuries.

Traumatic brain injury is the leading cause of death and disability worldwide, the leading cause of death of those under 45, and the leading cause of seizure disorders (nabis.org August 12, 2006). This injury is twice as likely to occur in males (NIH consensus Development Conference Statement October 26, 1998). I believe this is so because males are more likely to participate in risky behavior. The highest incidences for traumatic brain injury in the general population are those 15-24 years of age and those over 75.

There is no cure. Of those injured, 85% do not receive treatment or the needed counseling to help with long term difficulties (headinjury.com update of December 12, 2005). The high cost of rehabilitation has placed help out of reach of many who would otherwise seek help. Even those with insurance, over time, experience a dramatic drain on finances from copayments for so many appointments or from maxing out the limits of insurance coverage. There may also be fees from doctors or specialists that do not accept insurance or aren’t on your particular plan but whose expertise is needed if you are to recover.

Having received this injury, you are in it for the long haul. I know you meant to sign up on the other list but now that you are here, you can’t leave. We must help each other through this experience by passing along the little tidbits that helped us along the way. God Bless you on your journey.

"Do not train a child to learn by force or harshness; but direct them to it by what amuses their minds, so that you may be better able to discover with accuracy the peculiar bent of the genius of each.

Plato

It’s Living In My House

And I Don’t Know What It Is

I hadn’t really ever known anyone diagnosed with a TBI, MTBI, closed head injury, or a concussion or severe concussion with any long term problems from an injury. (Shall I say problems that are related back to the injury.) These are all terms I have come to know that seem to be used interchangeably. Almost everyone knows someone who fell or whose child was taken to the doctor and told he or she has a concussion. Instructions are given to take the child home and watch him or her closely for the next 24 hours. Usually the child has a headache and it’s over, nothing more said.

Then there are the many stories like the man who fell and landed with the screwdriver in his head. It was a WOW story! Television news showed pictures and highly trained surgeons performed complex surgery. Amazingly he recovered quickly, and was just as quickly out of the news. What a lucky guy, all better now. That’s what all those following the story would think. Well I am sure that just like Paul Harvey would say then there’s the rest of the story.

This is the rest of my family’s story. It begins with our son: Having the knowledge now about TBI, I am able to look back and tell you where it started in my house undiagnosed. I am not sure which hit was significant until the last. We were told that once you have a TBI each additional hit builds on the other. What I can tell you is there were signs all along that went unnoticed. Why? We didn’t know what they were. It wasn’t that we were totally negligent or oblivious parents. We did see a doctor on a regular basis when there seemed to be what we considered a medical problem.

Knowing there was a problem was a different thing. Some people don’t realize there is a problem, especially with a child at a young age. We were among those people. People like our son may just think that something is hard for them. They don’t want to draw attention to themselves or the fact that they seem to be different. Maybe they don’t know how to verbalize it; maybe they fear that others will think they are just being dumb. There are many reasons that the injury goes unnoticed. Many of those reasons also relate to the doctor who doesn’t understand TBI. Many relate to the patient and their family who don’t communicate what’s going on among themselves or even know to bring it up to the doctor.

Strapped in a child carrier on a bike at the age of 18 months, our youngest son encountered his first incidence of head trauma. When they were turning a corner the bike slid on gravel. Our daughter, the driver fell clear. Our son being strapped in, slammed his head into the curb. We rushed him to the doctor. The diagnosis was a severe concussion. We were to not let him sleep for more than 1 hour for the next 24. We set the alarm and woke him up and tried to engage him for about 10-15 minutes every hour all night. There didn’t seem to be much concern about it once he made it through that night. No one said anything to us to watch him for any other signs during his development.

When he was age four, we were at the park; I was on the other side of the slide with his sister when a little girl came up behind him. She threw a large rock that hit him on the back of the head cutting it open. Where the rock hit it bled and developed a large bump. We went home, iced it, and gave him some baby aspirin. (Today, years later the bump is still there although smaller.) The complaints of headache or soreness lasted about a week. As parents of five, we took it in stride that children are going to get hurt. We did not notice or know to look for anything that we would have thought to be related to this incidence.

While bike riding during his fifth year, once again he crashed, slamming his head into the mailbox post, made out of railroad ties, taking a chunk out of his ear. Again there was pain, ice, aspirin, and complaints that disappeared after a few days. Within 6 months, again on the bike, he experienced another crash, slamming his head into the street, requiring 6 stitches. No one at the hospital informed us of anything to watch for long term, and we didn’t piece together the incidence of injuries he had sustained over the five years of his life until later when it was pointed out to us.

Fourth grade came along. Up until that point the grades were high, but not without some struggles. Spelling was tough; reading was hard; and the math—well you get the picture. We had moved a couple of times and the teaching styles were different. We had no idea at the time there might be some other problem. He was put into a special reading group twice a week. His teacher spent extra reading time with him twice a week. We purchased Hooked on Phonics® to help him at home. We were thinking somewhere along the way he just missed something basic. Within weeks of all the added training the complaints started about the headaches.

After a thorough eye exam we were told it’s no wonder your child is having problems. He has a tracking disorder, and an accommodation disorder. The doctor was surprised he could read and remember anything at all. To put it simply his eyes were getting the words from three sentences in no given order. About the time his eyes would focus on a page it was time to look away from the page at the teacher to discuss the lesson and vice versa. Eye therapy was recommended. There are many children who have eye therapy in elementary school. We knew of quite a few that our children had gone to school with. He went twice a week in the beginning. Then, as improvement came, his therapy visits were reduced to once a week; they stopped because of his progress after about a year. This seemed to help quite a bit. We also made up games to help with the homework. Spelling tests were taken orally with almost always a 100%. On paper was a different story. Reading and writing remained a challenge. We later learned that eye problems are very common with head trauma.

In my research I found that often children who have had an injury may not show signs of a problem until months or years later (nih.gov Consensus Development Statement October 26, 1998). The reason for the lengthy delay has to do with the growth patterns of childhood. In the early years, a child is learning and growing at such a fast pace that he or she is able to accommodate the basic new knowledge without showing the results of trauma. This happens because the child is being helped along by their teachers and family and doesn’t do much work by himself. If the injury is not too severe, the child’s brain can follow along with this individual instruction that is common in kindergarten and the first two grades.

It isn’t until the 3rd or 4th grade that most children are really challenged past the basics: they have more independent work; they are applying what they have learned and doing more complex tasks on their own. Then the symptoms become apparent. When this happened to us, no one asked about any previous injury, and we didn’t know to offer this information, didn’t even think about it.

Eye therapy led us through the rest of fourth and into fifth grade. Early in the sixth grade school term, I came upstairs from the basement to start dinner to find my son running and sliding on the kitchen floor in his socks. I told him to stop before he hurt himself. I reminded him that if he fell and cracked his head it would be at least 4 hours in the ER, and I didn’t really want to do that tonight. I turned around just in time to see him making one last slide before I could stop him. WHAM! He hit the refrigerator. One second he was up, the next flat on his back, just like a cartoon. It really was comical looking, one of those times you laugh when you shouldn’t. Now, I am usually a very sympathetic Mother, but this was one of those times; and I was laughing, not knowing how badly he was hurt. He sat up and the blood started gushing from his head. Four hours and six stitches later we were on our way home. Diagnosis: cracked head on corner of fridge, will have pain for several days, come back and get the stitches out. Life goes on.

There were serious changes in attitude in the sixth grade following his injury, nothing major that couldn’t be explained away with things like new teacher, first time male teacher, entering the changes of being a teenage male etc. These attitude changes lessened somewhat over time, but resurfaced intermittently, and were one of the deciding factors that led to home schooling in the early part of seventh grade.

October 2002, three and a half years later, coming out of the doctor’s office with my son and getting into the car: somehow the car door struck the right side of his head. This time he was hit so hard that he was dazed. He laughed, I laughed, hard. It again was like a cartoon with the little birds circling around his head. I tried to get him to go back into the doctor’s office but he insisted he was fine. We sat there for about 15 minutes just to make sure he still thought he was fine and went home. He never said anything else about it.

School for him was a struggle. We home schooled through high school and were to go through graduation that May with others who also used home schooling. During this time, we were getting ahead of the ball game by taking some community college basics that would transfer easily. In his math class, up until October 2002 of his senior year, he was maintaining an A: and then he started dropping. We also experienced some changes at home. Even friends commented about how he was changing. At that time I thought that we had just hit the time when that teenage male thing kicked in. Selective hearing seemed to be one of my biggest aggravations or at least that’s what I thought it was. He would go to his room to get something he forgot when we were about to leave, and not come back, forgetting why he was there or that we were waiting to go. I could repeat myself numerous times and be told that he didn’t remember my saying that. He didn’t want to remember; that’s what I thought. There were problems with his sleep—at times not enough and always tired, and yet at the same time he couldn’t sleep. It didn’t make sense.

In December I took him for a hearing test. He said that ever since he hit his head on the car door he couldn’t hear out of that ear. Why didn’t he tell me before? How did it happen that I didn’t notice? He turned the stereo speakers up louder and mostly to the right, resetting all the dials in the car and in the house. Every time someone wanted to listen to something, he or she would have to reset everything. When I questioned him about it the response given was he wanted the sound on the side he was on. He had the beginnings of a cold when we went to the doctor’s appointment, so they wouldn’t do the hearing test. It was rescheduled for January.

Nobody wants to think there is something wrong with her child. At that time I felt my son was not acting like my son; there must be something going on. I was actually hoping that they would find something to explain at least the hearing part. Nothing could be worse than being punished for something you have no control over. (Being scolded for bad grades—was it lack of trying or lack of paying attention? Having others irritated at him for having to repeat themselves when he really didn’t remember them saying anything in the first place.) Remember, at this point we hadn’t even suspected that there was any type of long term injury. Our son was struggling. We were running out of ideas and we didn’t know how to help him. We have always had a great relationship, and while it was still really good, there were definitely moments when I just thought I don’t know who this kid is, he’s not acting like my son. There’s something going on, it’s in my house and I don’t know what it is. We were on the cusp of discovering just what that it was, we just didn’t know it yet.

I laugh, I love, I hope, I try, I hurt, I need, I fear, I cry. And I know you do the same things too. So we’re really not that different, me and you.

Colin Raye

Getting To Know Me:

Life Before Brain Injury

Let’s