Out of the Shadows
It is unknown why, but my mother discovered me having convulsions in my crib as an infant. As a child, I can remember functioning through the seizures yet if my mom was near, I would run to her and bury my face in her lap and say, “Mommy everything seems to look funny.” I would sense an aura and feel it but no one outside of me would know. I was okay in high school and handled the “Absence Seizures” but it made me somewhat shy. I was a good student. In college, I can’t remember the seizures affecting me. I went to Stephen’s College, a private women’s college, in Columbia, MO, studying Fashion Merchandising. I got excellent grades. After graduation, I did various jobs, mostly retail, in Omaha, Lincoln and Denver.
In 1989, I met a guy and everything was really, really good. Excellent relationship. We got along. Then I had my first seizure in 1994 that was accompanied by a loss of consciousness. The seizures also began to include non-purposeful, involuntary movements. At first, the guy was really kind and caring. I got a job as an Administrative Assistant in an office. I was on the phone with the Director of Human Resources and I had a seizure, involuntarily hanging up on her. She called me back and asked what had happened? I didn’t want to admit to having seizures. Appropriately, lavender is the color that represents “epilepsy awareness”. It grows in the shadows, just like I wanted the seizures to be. I was not prepared to talk about my condition publicly. It was kind of the straw that broke the camel’s back. I was terminated. The guy, encouraged me to apply for disability. Typically, the first application is denied and the process takes considerable time.
I was still with the guy when driving to Fremont, I crossed the center line and totaled my car in a head on collision. Everyone in both cars was wearing a seatbelt and no one was injured. I didn’t replace my car. Because I’m now basically homebound, my phone usage and the bill went up from calling my mom. The guy put a code on the phone so he could call his parents but I couldn’t call mine. During a spat, the guy said, “I get tired of it when you go… goofy on me.” And his other cutting remark, “You don’t have a job”. I reminded him that it was his idea for me to apply for disability.
I started sorting our stuff in the cupboards to prepare to move when I was ready. Friends and relatives helped me move right after he went to work. Being in a small town, I was afraid someone would call him. At 2 p.m., I called him and told him he had to come home. My mom, friend and I were there and when he came into the house, everything of mine was gone and I said, “I’m moving. No one separates me from my family.” He said, “I wish I had known so I could help sort.”
Mom and Dad thought I could manage the seizures like I had all my life. Dad lent me his pick-up and again I went across the centerline. I didn’t crash into anyone but went down into a field. I gave up driving. I lived in an apartment in the same town as my parents. Learning how to live a life without driving radically changed and redefined my lifestyle. In 1997, I moved to Fremont.
In my journey, I have done a lot of soul searching and building upon the early lessons learned in church. My experiences have strengthened by faith. Increasing my trust in God and the goodness of society. Frequently, Good Samaritan has come to my aide when I have collapsed from a seizure. I feel the need to pay it forward in society by doing humanitarian efforts for the greater good that includes volunteering for the American Red Cross Blood Drive and the Brain Injury Alliance of Nebraska.
Living with the effects of any kind of brain injury is hard. Like lavender, we would like to keep our disabilities in the shadows but having had these experiences, the quote, “Light is mostly froth and bubble. Two things stand like stone; kindness in another’s trouble, courage in your own.” Adam Lindsay Gordon seems to sum up the path through life that I have been on since I was an infant.
My story is about a guy named Richard. His friends call him Rich. He is 68 years old, retired and living in a quiet neighborhood in west Omaha. He’s married and has been for 45 years. Rich has a college degree, an MBA and has been a college instructor with the business faculty of a small community college in western Nebraska. He and his wife moved from western Nebraska to be close to his grandkids and enjoy the shopping and excitement found in Omaha. He joined a neighborhood wellness center and is involved with a Tai Chi program that offers Rich physical exercise and a social element of being part of a group. He is also part of a book club and joined a group to write his autobiography. He keeps busy and is enjoying his retirement.
That is who Rich is today. Before the accident, Richard was a sophomore at UNL. Being the oldest child and a son, Richard’s family thought he was extraordinary. He felt in control of what his family expected his bright future to be. However, his story took a wrong turn, literally. In January 1970, driving on 1-80, Richard’s car hit black ice at mile marker 405. His car went off the exit ramp and into the ravine rolling over several times. Without the restraint of a seatbelt, he was thrown from the car. The police officer found Richard in a coma. Bruised and broken, his left side paralyzed from hitting the right side of his head. Richard became “Poor Richard” after an automobile accident at age 19.
It was a different time and the innovations in brain injury treatment and therapy were not yet available. Doctors told his mom they weren’t going to operate. It was up to the Good Lord whether he lived or died. His parents waited anxiously for 21 days before he finally woke up. The doctor said, “Son, you’ve been in an accident, you may never walk again, you may never use your left arm again and you probably will not hold a full-time job.” Poor Richard’s world was just turned upside down. He looked at his doctor and said, “Doc, get me out of this bed and I’ll show you!” Poor Richard was smart and pretty cocky before his accident. He had a full ride scholarship with Navy Reserve Officer Training Corp (NROTC) at the University of Nebraska. He was going to be a pilot and fly in Vietnam and be a hero. Now, he was a “survivor of a TBI” in a personal battle with recovery. His world defined by his TBI. What could he do now in a world of “normal people,” where his father continually told him to swing his paralyzed arm so Poor Richard wouldn’t look like a “cripple” around him.
From Richard, to Poor Richard, to Rich, this has been my journey. Yes, I got out of that bed because I didn’t know what else to do. I am a survivor living with a TBI. I had to have help. My wife, my parents, brothers and sisters, my baseball coach, my college advisors and counselors were all part of my recovery. My gratitude goes out to these people, especially my wife. The state of Nebraska was there for me as well as the Nebraska Rehabilitation Services (now called VR) and the Nebraska Brain Injury Association (now the Brain Injury Alliance of Nebraska). They provided guidance and support. To all of these advocates, I am truly grateful.
So, what about today? Today, I am happy. I’m going to see my grandkids and they think I’m a pretty special guy. I’m a grandpa and I’m alive. Thank you, Lord!!
Brian Webb, Halfsy Hero
Hello, my name is Brian Webb and I will be running the Good Life
Halfsy in the fabulous city of Lincoln, Nebraska on October 28th. This
will be my 16th half marathon and my 22st distance race. Why do I run
one might ask? Because I can. I have been given a new lease on life. I
am a brain injury survivor, and that is my why.
My head trauma happened twenty years ago, a week after graduating
from the University of Kentucky. It was the spring of 1998, and I was at
home in Maysville, Kentucky. My parents and I were planning out my
future. We decided that it what would be best for me to work
with my father as a paid intern in the growing Information Technology
field. I drove back home to Lexington, KY to plan for my next big
“Life happens while making plans.” When I arrived at my apartment I
laid on my couch and felt the twinge of a headache coming on. The pain
became intense, I ran to the bathroom got sick and passed out.
Fortunately, my brother arrived on the scene, called 911 and an
ambulance picked me up. No one knew what happened to me. My
parents rushed to the hospital. My friends who I just graduated with
where there as well. My pastor picked up my grandfather because this
may be the last time he would see his grandson.
What happened? I suffered an intercranial hemorrhage to the back of
my brain. The medical term is an A.V.M. (Arteriovenous
Malformation). Think of the body as a plumbing system. Arteries and
veins as a plumbing system. My arteries and veins became tangled in
the back of my brain resulting in a clot. My parents told me that the
doctors said that I would have a 50/50 percent chance of survival and if I
survive, I more than likely be catatonic.
I was in a coma for three days, awoke and said, “Is this it Dad” He
began to cry. I began rehabilitation and started to become better,
However I then contracted bacterial meningitis. That should have killed
me. I am thankful to be alive. The road to recovery was and still is long
and hard. Running is the perfect metaphor for my new life. I am
running to live! Aerobic activity helps to grow gray matter within the
brain. This and many other discoveries about the body and myself has
led me to a passion to help other survivors, particularly veterans.
Soldiers are returning with TBI and PTSD. Running helps to quiet the
voices and inspires me to stay on the path towards success. I want to
share my discoveries with our soldiers. The road less traveled is a long,
sometimes lonely road. However, realizing how far I have come, I know
I will be successful. Stay strong, don’t quit, and never give up. I will
see you at the finish line!
I was a high-energy elementary school principal known for buzzing about the building in my suits and running shoes. My whole world changed when I sustained a concussion. I stood straight up into an old cabinet door that had popped open above me. That started my journey with Post-Concussion Syndrome and years of recovery. I had to retire from a career I loved due to my brain injury. I now serve on the Board of Directors for the Brain Injury Alliance of Nebraska. I advocate for the brain injured community, but specifically concentrate my efforts toward educating our schools about the Return to Learn Law and how staff can best support students with concussions returning to the school setting. I have also written a book about my experience entitled, Out of the Rabbit Hole: How a Concussion Changed My Life: A Story of Hope. More information about my book, as well as helpful resources and a blog, can be found on my web site, www.hopeforconcussion.com. I have found that sharing my story not only helps to educate others about brain injuries, but it has helped me to heal. Here is a short excerpt from chapter two of my book:
I’m not sure why I was so hesitant to see my doctor. Denial was probably the primary factor. It was a very inconvenient time to be out of commission. I was so busy getting the new school year off the ground that I simply did not have time for a concussion. But by that afternoon my brain fog had rolled back in and I could no longer think straight. I picked up the phone and called my family physician’s office. She had time to see me on Wednesday, exactly one week after I had hit my head.
I continued working that Tuesday. The pain and fog seemed to ebb and flow with my stress levels. I have very little memory of that day and am pretty sure I just soldiered through it. What else could I do?
My appointment was on Wednesday morning, immediately after the doctor’s office opened. I woke up feeling better; sleep seemed to help enormously. I felt so much better that I almost canceled the appointment. When my doctor walked into the examining room I summarized for her what had happened and described my symptoms. I mentioned feeling confused and showed her the lump that was still on my head a week later. It was still a little painful to open my jaw. I expressed to her that I was pretty sure I’d had a concussion, but I was over it and only visiting with her because I had promised my husband I would. I did not want to have a concussion, so I was working hard to will it away.
Throughout my life, this gritty toughness of pushing through the pain was my mode of operation. In high school, the principal called me “Grin”—short for “Grin and bear it.” (My maiden name was Barrett, so the nickname was a play on my last name as well as my personality.) Every strength we have is also a weakness. I was soon going to learn that there is a time to push through and a time to surrender and be still.
My name is Daniel. I am eleven years old and am going to be in fifth grade. I like math and science, playing the piano, building legos and reading books.
My brain injury journey began when I was six weeks old – my brain began pushing the bone on the back of my head off my head. There wasn’t enough room for my brain to grow normally because my skull fused together too soon. My mom says that’s called "craniosynostosis."
I had my first surgery when I was five months old. Things seemed great for a long time. Then my mom said when I was four years old, I began acting “impulsively” and having a lot of headaches. They said I needed more room in my head so my brain could finish growing. This time they used a titanium mesh plate to give my brain extra space. Not a big deal unless you need an MRI.
Again, things were fine. Since my second surgery though, I have had two concussions. The first was at a school with a pretty good protocol. They called my mom right away so I could get help. The second, less than a year ago, happened at a different school right after school on their front lawn. I asked them for ice and to call my mom. They told me to go home because I lived a block away. The school never called my mom. My mom said no protocol was used. My teacher at the school labeled my concussion symptoms as me being “unmotivated." I am a really good student with high marks, but I was struggling in my favorite areas after the second concussion. Six months later, I was still struggling in school, and my teachers didn’t understand about how brains heal.
My mom and grandma had been working to get help. Finally I was seen for a "neuropsychevaluation" at a trauma hospital. I am getting some really cool neurotherapy.
I wanted to share my story because I want others to know labeling isn’t helpful. Brain injury feels like an invisible challenge. Many people think you’re "angry, lazy or unmotivated." I am not any of these.
I hope when you’re talking to or working with someone and they have a quick reaction that you will stop and think maybe it’s because they have a brain injury. So many people do. Maybe it’s just a symptom and not who they are.
Rachel Kluthe's Brain Injury Experience
Rachel Kluthe's Brain Injury Experience
When I set out for a sunset wakeboarding session on September 3, 2015, two days after getting accepted into Doane’s Doctorate of Education program, I didn’t think I was about to take a life-defining last ride. It wasn’t my first wipeout, but this one rocked my brain just right to leave me struggling to function. Raised to be tough, I tried to push through my symptoms, to no avail. After the recommended two-week concussion recovery time window, I was nowhere near ready to face teaching again. After several failed attempts at returning to work, I was referred to Madonna Rehabilitation Hospital, where I attended vision, physical, occupational, and neuro-psychological therapies for months. Going from full throttle (running several miles before work each morning, teaching all day, working out with coworkers, socializing each night) to zero (unable to read, exercise, tolerate noise/light/screentime, drive, or do anything that brought me joy) slipped me quickly into intense depression and anxiety previously foreign to me. Upon being deprived of so many of my earthly abilities, I realized how much I had been relying on my own capability for fulfillment rather than on the faith by which I strive to define myself.
I invested in a Golden Retriever puppy, Muchacho Rayito del Sol (Spanish for little ray of sunshine), through whom I could live vicariously to set and work toward goals. At an annual eye check-up, my optometrist informed me that new markings on my retinas indicated I might have colon cancer, and I’d need to see a specialist. In the midst of my darkest days, I reached an even deeper low, wondering why my previously tremendous life had skidded to a dramatic, painful halt. Strangely, however, waiting for answers brought peace I hadn’t experienced since my injury, finally realizing how fragile life is and trusting God’s will for mine. Thankfully, the retina specialist found no reason for concern, so the scare turned out to be nothing but a needed change of heart.
Following Christmas break, I was able to return to half days at work, slowly adding one class at a time to full-time. One of the hardest challenges of recovery was returning to a toxic work environment with skeptical co-workers questioning my integrity and scrutinizing my explanations. Considering I followed doctors’ orders to rest and not overtax my brain, I would cry myself to sleep every night wishing I could work again, and not have to contend with my co-workers’ lack of understanding of the extent of complications in Mild Traumatic Brain Injury (MTBI) recovery. I thank God for the loyal coworkers who knew my heart, trusted my integrity, and lovingly welcomed me back.
In April 2016, I slammed my head into my granite countertop and was transported to the ER by ambulance. I said my goodbyes, feeling unable to control my own words and actions, thinking I had reached my end. Once stabilized at the hospital, friends and family encouraged me to feel happy the head scan showed no abnormalities, but I scowled, insisting I did not have strength left to persist in recovery; it was too much, too hard, too painful to continue. After a week of only sleeping and eating when forced, God rejuvenated my spirit and gave me the will to press on. I returned to work again and finished the last week of the school year strongly.
My therapists suggested a goal of August 2016 for returning to work full-time, but I had higher hopes. When I succeeded in working full-time 6 months before the goal, my students and I celebrated by taking a day off from math to play games, make a human pyramid, and take pictures of the glorious moment.
Throughout my recovery, I was also writing my doctoral dissertation. I may have quit had it not been for the calling to share the stories of other teachers returning to work after a MTBI through publishing my dissertation based on my recent experiences. On May 12, I graduated with my Doctorate of Education not because it was another achievement to check off my bucket list, but because I do not want anyone to go through what I have without widespread understanding, support, and hope.
My Journey, by Sheila Kennedy
My brain injury occurred in December 1982 when I was 15 years old after I was misdiagnosed with lymphoma. I actually had a bacterial heart infection that eventually entered my bloodstream and caused a cerebral aneurysm that was leaking blood into my spinal column. Surgeons repaired the leak and as a result I have 5 metal pins in my head and I’ve lost the peripheral vision on the right side of both of my eyes.
When I was discharged from the hospital I was told that I was “fixed” and that I would never have to think about this again. I had no idea that this would affect my life every day after. Before this happened, I was on the volleyball and basketball teams. I was tall so I did pretty well—NO MORE! Reading became a challenge because I would tend to read the same line over again. My ability to recognize where I was in relation to my surroundings changed. I would run into things on my right side and sometimes on my left. I got confused in crowds. People thought I was ignoring them when really, I just didn’t see them. I can’t see my right hand when I write. I can’t see someone’s whole face when I look at them. I always try to sit on the far-right side of a room so I can see everything. My memory is terrible, especially short-term memory. I’ve learned through the years to adapt to these deficits as best I can while trying not to let anyone know.
A few years ago I was noticing some changes in my vision. I saw a neurologist. A CT scan revealed that I had a “dead spot” or area in my brain that was no longer getting any blood flow and would eventually, with time, get larger and cause symptoms that resemble Alzheimer’s. I started to subconsciously prepare to literally lose my mind. I’m only 50 years old and my hope for my future was gone and I became very depressed. Don’t forget, I thought I was “fixed” and would never have to think about this again and yet, years later, sometimes all I can do is think about it!
One day at work my boss showed me a flyer he received about the BIANE Conference to be held in Kearney. I looked into it further and saw that “cerebral aneurysm” was listed as a type of brain injury. I had never thought of it that way before. I was excited to learn more about what was going on with me and my husband, who has been unwavering in his support of me every step of this journey wholeheartedly encouraged me to go. Particularly cathartic was taking part in the “Unmasking Project” for the traveling exhibit. I created a mask that showed how I felt about my personal journey with a brain injury. I left that conference even more excited about what I had learned and what I realized was certainly part of God’s plan for my life! I have started attending the support group here in Kearney and I am so grateful to have somewhere I can go to talk to others that have the challenges I have. It makes me cry just talking about it!
I am DONE hiding my brain injury and I am ready to use this experience to give hope to others. I know that my fellow group members will become friends as we continue our journey together. I look forward to what we can all learn from each other. I have HOPE again and I’m ready to take my life back!
Seeing Double, by Ruth Hamlin
My name is Ruth Hamlin. My story is no different than many others who experience a brain injury every year. I was driving to work when a vehicle entered the interstate and hit the side of my car, pushing me into the guard rail. My car bounced off the rail, spun across the freeway and hit the guard rail on the opposite side. The car was totaled and I was pretty shaken but there were no broken bones or gashed limbs. An MRI indicted there was no internal bleeding and I should be fine in a few days. I returned to my home and immediately went to bed. I slept for 32 hours.
About 3 weeks after the accident I started having trouble reading. Considering my age, I assumed it must be time to start wearing reading glasses. During the exam I told the doctor I felt as if my eyes were not working together. She asked if I had been in an accident or hit my head? For the next 4 years I went through multiple exams, eye therapy twice a week, and wore glasses with black tape, clip on prisms and various other methods to help improve my vision. I struggled to do computer work, read basic print, and made a lot of mistakes. I felt overwhelmed, helpless and began to doubt myself in every decision I made. I was frustrated and in denial, which lead to depression.
At the time, I had a promising career as the Executive Director of a foundation as well as a partnership in a jewelry business and small boutique. I was making a good income and life was good. Over the next couple years, I relinquished my share in the business and eventually resigned from the foundation as the stress of the mistakes I continuously made were creating problems both emotionally and mentally.
In 2017 I was referred to an ophthalmologist that specializes in brain injuries resulting in vision loss. He was the first person that made me feel empowered and as if there was hope for me and my situation. Over the next year I worked with him, purchased several specialized pairs of glasses and did numerous tests to track my progress.
While my eyes are in no way healed, today I can read if the print is magnified, and I have learned coping skills to overcome the double vision. Financially, I am still in debt and diligently struggling to climb out. However, I know that I will.
Since the accident, I have started a vision support group to help others with vision issues. My partner and I are creating a new nonprofit called Martinwood International that works with family caregivers and their loved ones. After years working with family caregivers, I now know what it is to have to rely on others to accomplish my goals. Through this journey, people have come into my life that were unexpected and yet have made all the difference in my recovery. Without discounting the difficulties, I have to acknowledge the blessings.
What I have learned is individuals with vision and balance problems resulting from a brain injury can regain their self-confidence, learn new skills, and return to a happy, productive, and fulfilled life. We may need time, support, effective treatment and certain accommodations to heal but together we can find our new normal and regain our life.
A brain injury does not mean your life is over. It means your life has changed. It may end up being a change that gives your life an even greater purpose.
To learn more about Martinwood International or the Vision Support Group please see our webpage www.MartinwoodInternational.com.
My deck, shuffled By Andy Sigler
The analogy I use to describe suffering my Traumatic Brain Injury is that it’s like I was at the poker table and the dealer shuffled my deck and before dealing me a new hand, he removed all the Aces and most of the face cards. The analogy the neurologist used was not so delicate. He said what happened to my brain was like going through the windshield of a car.
In early May 2005, I had a sinus infection. I worked as a bartender, which meant I had plenty of contact with all the nasty germs brought in to the restaurant. At least a couple of those germs were bacterial meningitis and infected sinuses are pay dirt for bacterial meningitis. The disease scampered into my skull and caused the formation of abscesses on my brain while I suffered a series of mini-strokes. Along with causing several cognitive dysfunctions like considerable short-term memory loss and deficits in information processing, the trauma also left me with a wicked stutter and damage to the optic nerve in my left eye, which left me partially blind. I underwent a craniotomy to remove the abscesses before my skull was stapled shut again and my family and I engaged in a waiting game to see how much brain damage I would live with or the rest of my life.
Less than a month before I got sick, I had been a full-time reporter for The Reader newsweekly in Omaha. I was engaged to be married. I rented a house with my fiancé that we shared with our two dogs. By the time the clock struck midnight on New Year’s Eve that year, I worked 10 hours a week doing menial labor between trips to the rehabilitation facility, Quality Living Inc., trips to the 13 doctors involved with my recovery, walking my dog and sleeping. After my engagement dissolved, I moved into a 1 ½ room apartment and was waist-deep in drug and alcohol addiction that would last 8 more years.
After another failed relationship with another alcoholic that left me homeless, I faced two options: substance abuse treatment or life on the streets. In my moment of clarity, I opted for treatment and have been sober for 5 ½ years. My stutter has largely stopped, due to relearning how to speak. I compensated for the memory loss by always keeping a pocket notebook handy until the smartphone Notes app came along, though I still leave myself written notes all the time. Along the way I developed a passion for working with animals which progressed to online veterinary courses and a job as a veterinary assistant. After all this time, I have a found a calling I like, a partner I adore and other sober friends and it often seems like that medical affliction that swallowed my life 13 years ago happened to a completely different person. I recently started getting involved with the Brain Injury Alliance. I’ve been going to TBI support group meetings and I will be trying to persuade other TBI survivors to tell their story at the state-wide Brain Injury Alliance Conference March. In doing so, I hope to encourage TBI survivors to get involved in their own recovery through the various avenues offered at the conference and through the BIA-NE.