- Liz & Vinnie: When Motherhood Means More
- From TBI to Volunteer, Father, & Husband - Dale's Story
- From Child Abuse to Special Olympics: Rueben's Story
- Joe's Journey
- Mike's Story
- Jake's Story - Concrete Lullaby
- Leslie Taylor's Story of Empowerment
- Steve's Story
- Ruby Red Slippers - Loren's Story
- A Caregiver's Hope - Tammy's Story
- Out of the Shadows
- Poor Richard
- Brian Webb, Halfsy Hero
- Sharon's Story
- Daniel's Story
- Rachel Kluthe's Brain Injury Experience
- My Journey, by Sheila Kennedy
- Seeing Double, by Ruth Hamlin
- My deck, shuffled By Andy Sigler
Liz & Vinnie: When Motherhood Means More
My name is Liz. My son Vinnie is 4 years old with multiple disabilities, as a result of a hypoxic brain injury at birth. He spent his first month in NICU, even though he was a full-term baby. And he was sent home on hospice care. He has spastic quadriplegic cerebral palsy and is blind (cortical visual impairment), non-mobile, nonverbal and g-tube fed. Vinnie’s brain injury at birth was caused by medical negligence in labor and delivery. I went into the hospital with full trust in them to know what to do to take care of us in the best way possible. Our lives changed forever that day, because the nurses and doctor did not monitor the drug Pitocin and my contractions properly. When I had contractions, they were too close together. Normally there is enough time in between them for the baby to breathe. The hospital staff violated its own policy on how many contractions I should be having, and within what specific time frame. Vinnie was trying to breathe and he could not, so his brain was deprived of oxygen over an extended period of time. They have described it to me like this: “It is as if you are swimming and trying to come up for air, and you can’t”. My sweet baby. It breaks my heart that I put all of my trust into these “professionals” who did not give us enough attention or effort on the most important day of our lives.
However, if I focused only on that fact, as I did for most of his first year here on earth, I would be so horrendously depressed that I would probably not be able to continue living life, or be able to function. I have had to search for some other kinds of spiritual meaning behind this, and focus on the positive aspects of our life--instead of all of the many things that we have been robbed of due to negligence and brain injury. Don’t get me wrong, there are days where I need to sit and wallow in my own self-pity and throw a big pity party. But it is doing myself and my son and the world a disservice if I do not allow myself to continue to pursue happiness and meaning behind all of the struggles and pain. Vinnie and I, both have a lot to offer the world, and we have to try to be healthy and happy to be able to share our unique spirits and joy with others. I tell myself that me and him were meant for each other. Even though it is so hard sometimes, Vinnie is how he was meant to be. And he was made different for a reason.
In Vinnie’s short life, we have endured countless challenges, both personal and systematic. Vinnie’s father did not want to be a part of his life or care needs, so he moved to another state a couple years ago. We do not have family here in Nebraska where we live, because we moved here to pursue my career goals and to escape the old people and places that had caused us a lot of grief. Inconsistent and a lack of support was something that we experienced regularly. Making new friends in an unfamiliar place, especially friends that could relate to with our unique circumstances, was difficult. Then there came the challenges involved in being Vinnie’s full-time caregiver. I could not ever fully enjoy the role of “parent”, because I was thrown into the role of “24/7 caregiver” which was heavy and consuming. All of a sudden, I had to quickly learn a lot of things that I never had to do before. How to do my own research about our health conditions, his being extremely complex. And my health was worsening too as a result of the compassion fatigue of caregiving.
I had to seek services for us, and encountered a huge lack of support from all types of different organizations and agencies who were supposed to be there to help us. It was actually shocking, the lack of support that was really out there, even when I was actively seeking it. I encountered daycares and schools that did not want to care for my high need’s child. I found government assistance programs that would ignore us or disregard us. I found a community which was non-inclusive in so many ways, from the non-accessible building structures and surroundings, to the people who had no idea what disability meant or how it affects us. I had to fight a huge legal battle on Vinnie’s behalf to seek justice for what was done.
It is very interesting how you think you are going to have a child and teach them all about the world. When it comes to a child like mine, all of a sudden you find yourself teaching an ignorant world about your child. Though things are not perfect, I have slowly found more friendships with local special needs families. I started a small local support group for online and occasional in-person support. I have a medical team that I can rely on for most all of our needs. I found a church with a special need’s ministry, so that Vinnie receives 1:1 support and we can attend service. They even have a sensory room where he can go for a sensory break! I connected with the Arc of Nebraska and found some support. They helped me advocate at a mediation with the school district (ugh--don’t get me started).
Recently, reaching out to Brain Injury Alliance of Nebraska was one of the best things I accidentally stumbled upon. Chris and Peggy were eager to reach out and provide a multitude of supports to try and connect us to helpful resources that I may have not yet thought of. Seeing what “real help” looks like, after seeing so much chaos and disorganization, and lack of support, is so humbling and empowering. I feel honored to have encountered an organization that actually does what it says it is doing. It feels like so often that people are just pretending to help. When really they are just doing the minimal amount of work required to stay employed. Sometimes it does not take much to be that supportive person to someone else. Just viewing people as people, and having a helping attitude can go a long way.
Despite the huge hurdles that constantly come my way involving Vinnie and his daily and lifetime care needs, I am stubbornly pursuing my MS in Clinical Counseling currently at Bellevue University. I am excited to one day be able to provide mental health services to vulnerable, diverse populations. And to be able to be ‘that person’ to others that I always needed, but struggled to find. Vinnie’s needs are constantly changing, but he is stable and healthy at home and I am very proud of him and all he has accomplished. He is the strongest little man I know, and continues to smile every day despite some really unfair challenges that he faces.
From TBI to Volunteer, Father, & Husband - Dale's Story
Dale Johannes, a brain injury survivor, knows what it means to make a difference. His experience is just one that illustrates how brain injury can happen to anyone, anywhere, at any time.
“When I was 17 years old, I was in a car crash where I sustained multiple injuries, my brain injury being the worst of them. After my injury I had to relearn how to do everything from talking, walking, eating, etc.,” Now husband and father of two, Dale’s story continues. “I have been fortunate to have gotten better, but many aren’t.”
As a Brain Injury Alliance of Nebraska volunteer and brain injury survivor, Dale shares his story with hundreds of professionals and community members working with the elderly population - a group Dale feels especially passionate about. Dale has a new sense of purpose since his involvement with BIA–NE began. “Working with the Brain Injury Alliance of Nebraska gives me the opportunity to achieve my personal goal to increase brain injury awareness, so others don’t have to go through what I went through over 30 years ago.”
You can fulfill your purpose and increase brain injury awareness and prevention by making a gift today. Your generosity supports BIA-NE’s efforts, including raising awareness and bringing visibility to what is often termed an “invisible injury.” Brain injury survivors can receive the support they need to forge a new path and find their voice, just as Dale has done.
“Individuals with brain injury, especially those in the elderly population, deserve more – they deserve better’” says Dale. “Through increased awareness and support we can make a difference and ensure quality of life.” Donate now!
From Child Abuse to Special Olympics: Rueben's Story
Hi! My name is Rueben. I was born, September 30, 1979, in Portsmouth Hospital, Virginia. My dad was in the Navy. We lived in a house by the beach near the Navy base in Norfolk, VA. The three of us were happy. Mom and I went to see my grandparents in New York. When we came back home, my dad was studying. Out of the blue, he hit me in the head.
They rushed me to the hospital. My mom told me, I passed away two times. I was in Foster Care until I was one year old. My Grandpa and Grandma fought to get me back to my Mom. We lived in a small town in Nebraska. I went to school and played. School was hard for me. Friends were hard too.
I have a brain injury and had ups and downs until I was a teenager. I was in Special Ed class and hung out with new and old friends. I was in Special Olympics in 1990-2003, powerlifting; swimming, all the events. I met my girlfriend in Special Olympics. We went everywhere together. We were great together. We have a son. He is now 15 years old.
Now, I have new friends at the VFW where I volunteer and at the Brain Injury Support Group. At the Nighthawks football games, I met Eric Crouch, Ahman Green, Irving Fryar, Rex Burkhead, Jeff Garcia and John Schneider (Bo on Dukes of Hazzard).
On September 8th, my friends at VFW and the Support Group helped me with one of my goals. I wanted to have a spaghetti dinner fundraiser to help the Support Group. The Commander let us use the VFW. People from the VFW and the Support Group volunteered. We had 84 people and made $1,122 for the Support Group. Everybody wants to do it again next year.
Another one of my goals is to write my story. I just need someone to help me.
When Joe was a 28-year-old Physician Assistant, he was seeing up to 35 patients a day in a busy doctor’s office in a rural Nebraska town. Judy, the Support Group Facilitator, wrote about the experiences that Joe shares.
Joe says, he had a “hair-brained idea” to get a Harley Davidson motorcycle. He and a friend traveled to Alliance and purchased a Harley Softail Springer. Joe thought it was beautiful, black with silver trim.
It was dusk. Joe saw the sun on the edge of the horizon and by the side of the road, a State Trooper trying to keep a horse in the ditch. The horse, startled by the approaching Harley, bolted out and across the road, jumping over Joe and kicking in the side of his helmet. Joe was thrown from the motorcycle, cartwheeling and somersaulting for 90 yards. The motorcycle continued down the road for another 250 yards without a rider.
Joe had a massive head injury. Amazingly, he did not have any other fractures but the whole right side of his skull was shattered. Transferred from Scottsbluff hospital to Madonna in Lincoln, because they specialize in brain injury, Joe remained in a coma for 6 months and inpatient care for 9 months.
As a part of his rehab, Joe learned three Kenny Rogers’ songs, word for word… “You picked a fine time to leave me Lucille.” Joe’s karaoke repertoire also included The Gambler and The Coward of the County. While the brain injury resulted in Joe’s loss of vision and hearing in his right ear and no sense of smell; his sense of humor remains intact. Joking that if he had a girlfriend, she could be homely, smelly and loud and he wouldn’t know. With an incredible memory for jokes, Joe enjoys getting people to laugh. His brother has no idea how Joe survived the accident except that the Lord was not ready for him and the devil was afraid he would take over.
Joe, as a health care provider and a survivor, believes it is important to inform people about brain injury. Along with the North Platte Brain Injury Support Group that meets at Great Plains Health, Conference Room C, at 2 p.m. on the second Monday of each month; Joe also works with planning groups to increase awareness and supports for people living with the effects of brain injury. While brain injury is no joke, Joe’s gift for laughter is good therapy.
Growing up, every time the phone would ring, we wondered is it my father? Dad, like other construction workers, would migrate to wherever jobs could be had, sometimes hundreds of miles away from home. The phone rang and I jumped at the jangle of the old-fashioned rotary dial phone. As I heard my father’s far away voice, I was delighted, as we hadn't heard from him in weeks. I was disappointed when all he said was, "Go get your Mother". Sounds bizarre to even think of us not knowing but Dad was in the hospital and had been there for six weeks in a coma. What we were told was another worker above Dad, dropped a heavy wrench which crushed the hardhat and his skull. Thus, began the very strange world of learning about traumatic brain injury. At 15 years old, I just knew that everything would be different from now on.
Eventually, Dad came home, and we all dutifully took turns tending to his needs. There seemed to be a constant gloom in the house and my mother aged before my eyes as the harsh reality of circumstances consumed her. Mom had been busy raising four children. Now, there was the extraordinary amount of work that she had to endure; processing paperwork for the insurance company, dealing with the state workman's compensation program, the constant barrage of inquiries by state workers pushing for Dad to go back to work because his visible head injury had healed. We watched as he struggled with his own internal challenges and after exhaustive number of visits to the state offices, they realized that he needed to be retrained for a new career. Dad escaped into his own world; drugs, surgeries, hope and then despair. After a five-year struggle, he died at age 50.
Forty years later, my life seemed on a very different track from my father’s. My career was one of intense pressures, successes and losses. I had many amazing experiences as I traveled around the world. I met captains of the most successful companies, professional athletes, actors (I spent time with Captain Kirk when I was in London). I stood behind a wheel of a racing yacht; experienced scuba diving in the waters of the Great Barrier Reef, skied the best places in North America; golfed at the premier courses. Wearing black ties enough that it warranted owning a tuxedo as I dined at many superb restaurants around the globe. All the excesses took a toll on my body.
Plagued by constant pain that I still experience today, lead to visiting more specialists than I knew existed. Yet another prescription was added to my already extensive medication and supplement list. Apparently, the new medication was the excess that my body couldn’t handle. I began to have a series of seizures. My son found me seizing and I was rushed to the hospital. While in the CAT scan machine, I seized again. Cardiac arrest lead to being in a coma. Anoxia is a loss of oxygen to the brain, similar to when a person drowns. I have been dealing with the effects of anoxic brain injury for over seven years.
The rehabilitation hospital scared the life out of me, so to speak. At first, I didn't know where I was, nor why the doors of the hallways were locked. Scary to be awake yet so tired that I wanted to sleep forever. Eventually, I was brought home where my ever-loving wife and my dog Maddie kept constant watch. Rehab was intense, puzzles were intense, speech and occupational therapy seemed never ending. And then came the black void of deep depression.
I had a rich life. And now came the realization that all of that was behind me. I resented what the medication had done to me and the recognition that I seemingly would never have my life back. I worked so hard to achieve a great life and so quickly it seemed to be taken away. I realized that either I had a wonderful life still to live, or I could sit in my own despair for the rest of my days. I made my choice. I read and researched a lot. I listened to my body and my mind. I am determined to get better, day by day and to regain my self-worth. Yes, I am disabled. Yes, I have an invisible injury, and yes, I walk with a cane, but in the end, I'm still living a great life. I have my wonderful wife, my exceptional children, four beautiful grandchildren and a never-ending growing list of friends. Yes, I have it good.
Jake's Story - Concrete Lullaby
On his 6th birthday, 20 years ago this month, Jake Stewart suffered a TBI from a fall. Like so many people Brain Injury Alliance of Nebraska serves, Jake has found ways to compensate and overcome the lasting effects from his injury to find his own voice and literally write his own story. Jake currently lives in Wayne, Nebraska where he is attending Wayne State College to obtain a master’s in education. His work has been published in The Judas Goat, including the short stories “West of Salvation” and “One Kiss Too Many.” He is also the author of the novel-in-verse Whiskey Vengeance, as well as the Wayne State newspaper column called “Dead in the Water.”
Swimming rustic style,
beneath backyard slide—
for a 6-year-old
in a plastic camo vest,
action hero in training—
the air is hot,
the water cold,
Up until action hero
drops his knife,
not at all
but to make up for it,
he leans off the ladder,
not too smart
with the water
from the rungs.
a close up
in the opposite
of slow motion.
arms and legs limp,
hanging out of a shopping cart—
lean over the side,
on a blurry floor,
back to black.
wires with suction cups,
so many questions.
How many fingers am I holding up?
How stupid do they think he is?
Struggling to walk,
long before his poor life choices,
as he tries
to get to the bathroom.
Years go by
until he learns
about the seizure
during the CAT scan,
about holding out his arms
toward his mother,
as if life
depended on it,
mother being pulled away,
too much pressure
on his brain.
To this day
moments get foggy,
facts mixed up,
and always present,
with no one around
to find him.
Leslie Taylor's Story of Empowerment
Hello, my name is Leslie Taylor.
I was a long-haul truck driver. On October 14, 2013, my life changed. According to the truckers at the site, the dive I took from the cab of my semi was impressive, and I really nailed the landing! I fell from a standing position and landed on the upper left side of my face and head with an impact equal to a 9-foot fall. I was diagnosed with a closed head concussion, a traumatic brain injury.
The dark glasses that I wear help with low vision issues. At times, I use my white cane when in crowds or unknown places. Some people find it confusing that I am able to drive, but use a white cane and have issues walking. My vision is affected by the brain injury and these vision issues affect my balance and perception. The brain injury also effects my memory and comprehension. When walking, changes in my surroundings such as the wind, smells, sound and air pressure, can stop me in my tracks. You would not know from looking at me that I live with nerve damage in my hands, face, scalp, shoulders and ribs, and damage to my lower back due to the accident.
The effects of the brain injury have changed my life on every possible level. Now, I time my outings and appointments when my eyes are working the best. I have always loved to read. It takes me so much longer to get through a book, and because of the short-term memory loss, I do not retain the information like I did before the accident. Two months after I finish a book I can read again and it will be like a brand-new story for me which means I will never run out of something to read, right?
I am still working to resolve my case with the Work Comp carrier and my past employer. I filed for SSDI and Social Security around March 2014 and won the award March 2017. The benefits through SSDI have helped to ease my financial burden with the monthly benefits of cash for bills and medical coverage.
It has been over six years since my accident. I have to say that my life is nothing like I want it to be and each day is still a struggle. Some things have become easier the longer I use my new bags of “tricks” as I call my new tools. These new tools have helped a lot but I will also need to keep finding new tools to continue adjusting to the new me and my new life style. I still have times of feeling alone – just as most folks do. I have lost contact with some of my old friends just as I have made contact with some new friends. All my friends, old and new, are helping me on my new adventures. I am sharing my story with you knowing I am just one of thousands in this state living with the effects of a brain injury. Each one has a story, is on an adventure of their very own. Each has their own ‘bag of tricks’ to help that adventure be a positive one. Just as I am. I am NOT alone and I’m fighting for awareness, not only of myself, but for all Nebraskans. After all, I do have a voice. I am not a victim of any system and that IS empowering!
My name is Steve Martin. I have spent my career working to help people access quality health care as a health care professional early in my career followed by helping people finance their health care needs through health insurance.
When the Brain Injury Alliance asked to share my journey, I agreed because of a personal experience I had with a brain injury. It gave me personal insight into what individuals, along with their families and care givers, go through in the process of treatment and recovery.
Today, more than 36,000 Nebraskans are living with a disability due to a brain injury. While each year approximately 9,000 Nebraskans may suffer from some type of brain injury, over 1,000 will need specialized support to recover from the injury and manage its long-term effects. A brain injury can happen to anyone, at any time, at any stage in their life.
In my case, it started with a bump on the head just before Labor Day in 2015. I stood up and hit the top of my head on the edge of an open cabinet door. I have hit my head many times and suffered from a few concussions while playing college football. After the short-term pain subsided no other symptoms occurred, so I went about my life as usual. Over the next month I would experience what medical professionals called a Chronic Sub-Dural Hematoma. After nearly a month, I began to have repeated seizures on the left side of my body. I was hospitalized, and it took several days for the seizures to be stopped and controlled with medication, leaving me paralyzed on the left side of my body. After a week in the hospital I was discharged, but it was not the hospital who guided me to my next treatment.
I was fortunate to have had experts in the field who recommended what I should do to have the best chance of a full recovery. I consider myself lucky, as I know currently there are individuals with brain injuries who are not given appropriate guidance and support that result in the best possible treatment or any treatment at all. This is important to note, because delays in treatment of post-brain injury conditions can slow or limit the long-term recovery potential or cause individuals to suffer from more long-term problems.
In my case, I was admitted to QLI in Omaha and after a month of intense rehabilitation was walking without assistance and working part-time. In two months, I was recovered and back to work full time. It is important to note, that the best treatment for brain injuries is often not expensive. In my case, my two months of rehabilitation cost less than one day in the hospital.
Over my 42 years working in health care, time and time again, the best care done at the right time and the right way results in the lowest cost.
The Brain Injury Alliance is working to help fellow Nebraskans who suffer from brain injury understand and engage the resources they need to achieve their maximum potential recovery. They are working to build a statewide, brain injury network to serve all ages that includes regional specialized facilitation of resources and support groups across the state to help individuals, their family and care givers cope with after-effects of brain injury. Left without support and appropriate treatment, individuals can suffer from problems that are inappropriately treated as mental illness or result in engagement of the criminal justice system. Both cost the state significantly more than appropriate problem identification and treatment at the time of brain injury would have cost.
In addition to the cost of inappropriate care, the cost of disability and loss of productivity unnecessarily burdens families, employers, and the state budget. In a state where every worker counts, investment in brain injury awareness, appropriate treatment, and support systems are dollars well spent.
As a result of the effective treatment I received at the time of my injury, I was able to return to my career until my retirement. Now, with a greater understanding due to my personal journey, I encourage awareness and access to options for people experiencing a brain injury.
Ruby Red Slippers - Loren's Story
Before my TBI, in 2014, I was a design engineer. I have written a poem about my TBI, I have shared it with my support group and it was received warmly. They pointed out that having a brain injury can feel very lonely because people don’t enjoy sharing the dark parts of their stories. I wrote most of my poem when I was in a very low place. I am willing, even excited, to share my personal story, especially if it can help others realize that they aren’t the only ones feeling down, and progress can be made, even when it feels like you’re in a bottomless pit.
Ruby Red Slippers
I used to enjoy Colorado to ski
It was a hobby where I really felt free
But luck ran dry and I got a bad dose
I hit my head and spent a week comatose
I suffered a traumatic brain injury
All my fight went into recovery
Prognosis was bad, but who gives a cluck ;)
Beat paralysis with stubbornness and luck
Three and a half months to learn to walk again
So determined, I’d climb any mountain
Support at Craig hospital for so long
My family is ridiculously strong
Then here at Madonna I could always feel
Help everywhere, so my resolve was steel
I couldn’t drive so I had to ride the bus
Rather freeze my toes than put up a fuss
Had a project at the Tractor Test Lab
It seemed to validate all of my rehab
Recovered for two years with no interfering
Before I attacked work in engineering
I was convinced this would just be a story
That I could break out to highlight my glory
I thought the old me would be back again soon
Until the cold, hard truth gave me a new tune
At Kawasaki I achieved engineering
But soon I went from cheering to tearing
Worked long hours and gave all my energy
But I couldn’t make up for my poor memory
They let me go and so far that I fell
Plenty of days I thought I was in hell
I was ashamed of my incapability
Making ends meet because of disability
I thought disability was pathetic
Until I needed to call the medic
I know my reasons are completely legit
But that doesn’t mean I could stomach it
I thought about committing suicide
Decided no, mainly for family pride
That certainly won’t help with depression
Passing days just to quell family’s obsession
Motivational sayings I’d always receive
Things will get better, you've got to believe
I live on my own, so for that I am proud
At least while in front of a clapping crowd
We all have our own unique journey through s;)it
My compassion has multiplied because of it
I wish I’d have learned lessons with less pain
But growth regularly comes through severe strain
For me, a support group is nearly a must
A crowd who understands, and I can trust
Empathy’s great, but understanding is more
Acknowledging things normal people ignore
I’ve been forced to prematurely retire
Plus side is, my schedule earns people’s ire
Deliberate effort for my world to recoup
I’m still fine tuning my new social group
After giving up hope of finding a new career
I learned to accept my new normal for a year
Repeated failures made me give up hope
My family working to refocus my scope
Slowly I saw that my peer group had shifted
The age of those I fit-in with had lifted
I had more in common with seniors than youth
Age lets others appreciate my truth
I give care to elders who want my assistance
A perfect way to make my subsistence
Grandparents get how my memory has cracks
But they see me pushing to fix where it lacks
I respect each person after my hassle
No longer looking down from my castle
A model human because of this drama
But that’s only according to my mama
I don’t know where all of the chips will land
But for now I have somewhere to happily stand
This could be viewed as a needed shake-up
But if I could click my heels, I'd love to wake up!
A Caregiver's Hope - Tammy's Story
We all have those moments we can point to when our life changed. For the rest of our lives, we will see our life as before and after the event. Before October 16, 2011, I was raising my teenage daughter and dealing with normal day to day life. After, I was in a fight to find healing and keep hope alive for my daughter and myself. She had fallen at work in August and hit the back of her head against the concrete floor. I took her to the doctor, had a CT scan, and was told she was fine. Little did we know, she was far from fine. Weeks later, on October 16, 2011, a severe migraine began which became her daily companion 24/7. Three ER visits and a variety of doctor visits, including neurologists, provided no answers or relief for her. She struggled to make it out of bed to attend school and work. As a parent, I was supposed to help her and get her life back to “normal”. I felt so helpless and wished it could be me instead of her.
After several months, I took her to Diamond Headache Clinic in Chicago where she was hospitalized for 10 days. The meds they prescribed helped better control her pain, but we were still on a roller coaster where pain was easily exacerbated by the stresses of life. She dealt with side effects from the pain medications, particularly brain fog & fatigue. I continued to search for answers through physical therapy, chiropractic, and acupuncture, to name a few. I took her to Mayo Clinic in Rochester without finding the answers we desperately needed. And as the years continued, we were treading water & trying to keep our heads above it. I saw the light of hope fade in my daughter’s eyes. She began to believe this was as good as life was going to get. I refused to believe it.
A chiropractic neurologist in California was recommended to us and we drove to see her. Within 30 minutes of our visit, we had the diagnosis we hadn’t gotten in 4 years-post-concussive syndrome. Over the years, I’d repeatedly asked neurologists if her symptoms were related to her fall. I received shoulder shrugs and no answers. As a speech therapist who worked with patients suffering from brain injuries, it was so frustrating to think I couldn’t get a diagnosis or treatment for my own daughter. With the diagnosis, a weight was lifted, and the healing began. It hasn’t been easy. But with continued care from a chiropractic neurologist and speech therapy using Interactive Metronome®, a tool I learned about in California, she has continued to heal.
After years of struggling, I don’t want anyone else to suffer and I don’t want other caregivers to feel alone. My family and friends were supportive, but they couldn’t fully understand the daily pain of watching one’s child deal with the roller coaster of chronic pain that could derail life in an instant. I’ve learned I’m not only a parent but a caregiver. I’m advocating for the supports my daughter needs. I’m standing in the gap for her, so she can have a better life. Because of our experiences, my daughter & I have become involved in the Brain Injury Alliance of Nebraska and facilitate a support group for those in their teens & twenties (Facebook page: Omaha Teens & Twenties Concussion/TBI Support Group). I’m so proud of my daughter and her resilience as she walks this journey. Life is different after October 16, 2011. It isn’t what we planned but it’s a blessed life God has given us. Hold onto hope and know you are not alone.
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, “Life 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.