Brain Injury Stories

TAMIKA

Tamika, a single mother of two adult children and one teenager, as well as a member of the Yankton Sioux Tribe, learned from an early age the importance of being an active member in one’s community.

“My mother worked for Indian Education in St. Paul Schools,” Tamika says, “and she would take me to little functions they would have. I think it’s just in my blood. I’m really passionate about racism and equal rights and poverty and abuse.”

While working for Community Action Duluth, Tamika began experiencing headaches and recurring numbness in her head. Her doctors kept insisting it was a sinus infection, but an eye doctor on the reservation in Cloquet discovered she had a pseudotumor caused by her body’s reaction to birth control hormones that was causing excess pressure and fluid on her brain.

After years of regular spinal taps to drain the fluid, Tamika had surgery to permanently address the issue. In the time since her surgery, Tamika had to learn to walk, climb stairs, formulate sentences, and retrain her brain all while raising three children. Her vision is unpredictable, meaning she can no longer drive a car.

“My youngest daughter was a baby when it all started,” Tamika says, “She’s never known me to be anything but who I am now. With my other children, I was very involved in their schooling and in the community. But I was healthier back then.”

However, Tamika made it her goal to get her GED, a goal she finally met after a year of hard work that included housing insecurity, health flare-ups and the daily stresses of family life. Tamika used the Alliance’s Case Management program to coordinate with an ILS worker to help with her schooling and to navigate the overwhelming bureaucracy involved with her medical benefits.

“It took me about a year to graduate,” she says, “And it was hard. When I get stressed my health problems flare up. But I had my goal in mind and with the support of [my Case Manager] Lauren.”

Tamika hopes to continue her education at the college level, not only to improve her employment opportunities but to demonstrate to her children that her disability didn’t keep her from her goals.

“My daughter is dyslexic,” she says, “And in order for her not to use her disability as an excuse, I can’t use mine. I don’t use my brain injury or my eyesight to hold me back. So I had to finish. And I have to continue. I tell my children ‘Just do it. You never know. Even if you’re afraid, just do it. You only fail when you don’t try.’”

Tamika

TAMARA

“In February 2018 while at work, I had an arteriovenous malformation (AVM) rupture, subarachnoid brain hemorrhage, and stroke. I was in the Neurological ICU of Swedish Medical Center for 3 months with extreme brain pain and brain vasospasms. Before I left, I learned to walk again, take care of myself, and had intense speech therapies. When I got home, I needed to navigate and find my own therapies and treatments to help create my “new normal”. For example, I was working with many doctors in Denver, yet not one was helping me with mental health issues during this life change. Finally, I was in cognitive testing with Dr. Medina and she mentioned the Brain Injury Alliance of Colorado (BIAC).

In October 2018, I started taking classes such as The Mindful Brain taught by Dr. Medina, Grief and Loss, art and poetry classes, and I also attended the BIAC support group. Every one of these classes and groups immediately made me realize I wasn’t alone anymore. I met people that looked just like me who had little or no obvious brain injury impairment or scar. I would hear about the challenges of other brain injury survivors and feel less lonely because they were my challenges and symptoms as well. This helped me understand that what I was going through with this new brain was a normal part of my new life. I was greeted with open arms, unconditional love, and tremendous support. Since then I have utilized different types of support at The Brain Injury Alliance of Colorado and they all have made a tremendous difference in my life. My goal is to work with doctors and brain injury survivors of all types and bring them to BIAC. If I had not found my new tribe at BIAC when I did, I would have fallen into a deeper depression or worse, they saved my life!

My “new normal” is something that has taken me time to understand and create, it still changes as I move further away from my brain break. My husband reminds me constantly that my ONE job is to focus on anything that will help me feel better, get better, and create positive development in my journey. I have spent a good year creating my process of a daily schedule and finding the doctors and therapies that can aid in my development and new world. These include attending weekly classes at BIAC, vision, mental health, speech therapy, as well as scheduled rest and down time too. I now struggle with debilitating head pains and memory loss and both have made me feel pretty lonely and confused at times. My repetitive daily schedules and habits allow me to remember and share my day as well as create my “new normal”. I have realized that this journey is slow to develop, and I have had to take breaks trying to create my new life. I will take time to stop to practice and enjoy a new process or therapy before adding a new one. My “new normal” is 100% different from my old life, but I am slowly learning how to appreciate it and stop to smell the roses too.”

Tamika

MICHELLE

“On March 13, 2017, I was stopped at a traffic light and a young girl looking down at her phone rear-ended my car going 45 mph. I obtained a traumatic brain injury and Dysautonomia, which completely changed the trajectory of our lives. My husband and I were triathletes and endurance athletes. This is a picture of us racing adaptively. Two years later, I still struggle with daily head pain, attention, short term memory, cognitive delay, sensitivity to light, and extreme sensitivity to sound. I am so thankful to the Brain Injury Alliance of Colorado!

I have been able to participate in art therapy, music therapy, support groups, classes on: grieving, mediation, and brain injury, social outings with other survivors to: baseball games, lunch, and movies. This year I am excited to participate again in the Pikes Peak Challenge. I will be doing the 2 mile walk in Manitou Springs. My team name is Team Positive! I believe having a strong, positive mindset is a huge part of my recovery.”

Tamika

CAT

“The morning of Super Bowl Sunday 2015, on a Colorado highway, there was a distracted driver in a pick-up truck that didn’t notice traffic was slowing down and slammed into me and my family. Thank goodness my family checked out okay after an ambulance ride to the Emergency Room (ER). I felt confused and like I was in a fog, but ER staff missed my concussion and TBI due to other car crash symptoms. I was released and sent home.

The next morning, I woke up with a baseball size hematoma on the back of my head. Concerned, I called my primary physician’s office. They told me they couldn’t get me in for a few days. Finally, when meeting with my doctor he said he believed I had a concussion. He recommended I see a neurologist and told me to rest.

I tried pretty much everything my doctors recommended and only improved a little bit. Two years post-concussion, I was told my TBI symptoms were permanent. I lost my job, my freedom, and much of who I was. There are major limitations on what I now can do. My TBI symptoms have left me disabled and unable to live my pre-TBI life.

The Brain Injury Alliance of Colorado (BIAC) has brought me HOPE, JOY and GREAT SUPPORT. Through several workshops, events and programs, I have found a new positive sense of self. Most importantly, I found a community of fellow brain injury survivors and a wonderful BIAC staff to help me live the best life I can live. Thank You BIAC and my new brain buddies!

It is great to know I am not alone!”

Tamika

MITCHELL

Mitchell’s family didn’t know that their son was in a massive head-on collision in North Dakota at 9 a.m. on May 1, 2015. It wasn’t until he had already been sent to two different hospitals and the hospital chaplain had been desperately trying to locate his family for eight and a half hours that his family were contacted and told to get to Mitchell’s side immediately.

As parents facing the possibility that they might have to sign off on their son’s organ donation, Mitchell’s parents, David and Kathy, were devastated. However, they also were aware of Mitchell’s thoughts on the situation because his driver’s license was clearly marked “organ donor.” In the midst of all this turmoil that simple fact planted the seed of an idea in the family’s mind.

After 212 days in the hospital, Mitchell returned home. In addition to rebuilding his mind and body, Mitchell wanted to make a bigger change in the world.

“Every law is an idea,” David says, “What is it that we wish not to happen to other people? What is it that we actually want to change? Well, nobody should have to wait this long to get contacted. Phones get locked up; they get destroyed. They get lost. They’re a tool but you can’t always rely on them. But if there’s a database tied to your driver’s license . . .”

Together with the Minnesota Brain Injury Alliance, Senator Jason Isaacson and Representative Kelly Moller, Mitchell’s family created what would come to be known as “Mitchell’s Law.” As part of getting his bill made into a law, Mitchell became a full-time Citizen Advocate – learning the ropes of advocacy and receiving regular training from Alliance staff Jeff Nachbar, Mollie Clark and Zack Eichten through the Alliance’s Citizen Advocate Academy. While working on his own physical and neurological recovery, Mitchell began bringing his story to the Minnesota State Capitol and sharing it with lawmakers on a weekly basis.

Mitchell’s Law soon began going through the 2019 legislative process which culminated in hearings in early March. On March 5, Mitchell shared his story before the House of Representatives. It was an effective testimonial and, on May 24, Mitchell’s Law was included as part of the transportation bill adopted during a special one-day session and signed by Governor Walz.

Mitchell’s Law was a triumph, not only for Minnesotans, but for disability advocates across the country. In the Epilepsy Foundation of Minnesota’s End of Session Wrapup, they refer to Mitchell’s and the Alliance’s work as “an example of grassroots advocacy in action” and say that “Mitchell’s advocacy and presence at the Capitol was instrumental in keeping this legislation moving.”

Mitchell knows that making a difference takes time and effort. And he’s willing to put in both the time and effort to changing the world. He’s recently joined Toastmasters to improve his speaking skills, and he works on reading out loud every day. But, it’s this effort that can make a huge difference in peoples’ lives.

“I want to hopefully show other people that they can make a difference,” he says.

Tamika

MICHELLE

When Michelle Beaupre was three months old, she cried and her father shook her. Her brain started to bleed. She wasn’t expected to survive. When she did, she was blind. Her vision returned, but basic skills – potty training, speech, locomotion – took a lot longer for her to learn. The right side of her body remained weak. She has to undergo frequent surgeries. Her short-term memory is unreliable. Some days are good, and some days she has trouble finding words or putting her thoughts together. Almost thirty years after her father shook her, Michelle lives with the results of his actions.

“I have a really tough time accepting it,” she says, “And I blame myself. So I’m working on humoring the idea of, ‘how is it your fault?’ Well, ‘cause I cried. ‘Well babies cry.’ I know I really should blame him, but I can’t get to that mindset, so . . . it is what it is. It’s still hard to grasp.”

Michelle’s days are fairly routine, depending on if she has therapy or medical appointments, and she tends to stay at home where she won’t be inundated by large groups or crowds. Michelle’s aversion to groups fortunately didn’t keep her from attending an Unmasking Brain Injury in Minnesota mask-making event. That particular even just happened to coincide with Unmasking being covered on Twin Cities station Fox 9, so Michelle ended up sharing her story on television.

“It was rough because I was so emotional,” she recalls, “It was the first thing I’d done that had to do with the brain injury.”

Michelle’s story and mask ended up becoming a big part of the initial wave of the Unmasking project. Her mask was seen multiple times, but most importantly, her story struck a chord with people. And Michelle started warming to the idea of sharing it with a wider audience.

Shaken Baby Syndrome leaves invisible and irreversible scars. Though her life is affected by these scars, Michelle is determined that it won’t be defined by them.

“Yes, I want to get my story out,” Michelle says, “but it isn’t necessarily about me. My biggest goal with this whole thing is, yes explaining my story and stuff, but more saying, ‘This is not okay.’ I want to be a voice for those babies that can’t talk because they were shaken. I just happened to be one of the lucky ones. It’s the biggest thing I want to emphasize. No, it’s not okay.”

Tamika

JARED AND AUDREY

Jared and Audrey met in college, at Brigham Young University, and dated on and off for several years. Jared was enamored by Audrey’s eyes and smile while Audrey was captured by Jared’s wit and unconventional outlook on life. The two complimented each other and they shared a mutual respect for the other’s goals and dreams. After Audrey completed her mission in the Philippines, they announced their intention to marry on May 1, 2015.

Six days before the wedding, however, everything changed. At a friend’s horse ranch Jared was bucked off his horse and knocked unconscious, either from the fall or from being kicked by the horse. Although he regained consciousness and was relatively lucid on the way to the hospital, Jared slipped into a coma during his CT scan.

It took Jared about a month to fully emerge from his coma, and he and Audrey knew their plans for the future had to change. But, Audrey says, “I’d decided when he was in a coma that if he woke up and he was still my Jared that it didn’t matter what his physical capabilities were. We’d make it work.”

On April 23, 2016, Audrey and Jared tied the knot.

Jared’s accident resulted in Audrey having to step up and take more of a proactive role in their relationship while being careful to let Jared do the things he’s capable of doing around the house. In the beginning, Audrey would “do” while Jared “directed.” However, over the years, Jared and Audrey have managed to find a stronger balance in their personal life. Jared’s cognitive skills are as sharp as ever, and getting stronger. While people tend to underestimate Jared because he uses a wheelchair and speaks softly, a few minutes with him reveals his charm, wit and grace.

One thing Jared and Audrey learned from their experience was the need to accept help from other people and that accepting help can be a strength, not a weakness.

“We had to let go of our idea of total independence a long time ago,” Audrey says. “So we rely a lot on other people, which is not something we were used to before. We’ve depended so much on hope. More than anything, we maintain a shared hope. We have the shared goal to work on his recovery and keep moving forward and the hope that we’ll still have a happy relationship. That doesn’t need to disappear because of this change in our life.”

Recently, Audrey and Jared welcomed a new member to their family with the birth of their child. Although they find themselves in a very different place than they’d imagined when they first met, Jared and Audrey are an example of living through a disability, not in spite of it.

“Hard things are going to happen to everyone,” Audrey says, “and it’s better if we choose to adapt and accept the situations that we face and the circumstances we’re given.”

Tamika

DELLA

Della had been retired for just over a year when she was out working with a horse when the horse tripped. Della and the horse went down and she hit the ground with a whiplash force. In addition to a closed head traumatic brain injury Della also experienced significant injury to the muscles around her eye. At 58 years old, Della spent approximately 30 days in the hospital both in the critical care unit and skilled care. Her mother reports that she was agitated and struggled with fine motor skills. Della felt like she sent home with no direction while she still experienced vision concerns, communication barriers, significant challenges with eating both concerning lack of appetite and the motor skills to feed herself, short term memory loss and began to experience depression. Della recounts that she had friends that were consistent and encouraging as she worked to regain her active lifestyle to include walking, cross country skiing, bird watching, gardening and to return back to her work with horses.

Della does not want to sell anyone short for the support they provided and the friends that stuck by her through this journey. She recognizes her friend Diane and her mother were highly involved with motivating her to continue to move forward. She had a primary physician that recognized the need to refer Della out to Iowa City Hospitals and Clinics and Mayo Clinic in Rochester where she was able to complete three surgeries to repair the muscles around her eye where there had been extensive twisting. Della also attributes getting a part time job with an employer that understood her challenges and needs and supported her in finding accommodations to do her job and finding a dog to adopt aided her recovery tremendously. Della shares that finding her dog was critical in providing her support and motivation in her recovery. While Della still experiences vision and language challenges she wants people to know that by staying active, keep a sense of humor and develop the tenacity to never give up; life can be good again. “Oddly enough, good has come from this (injury). While I don’t encourage people to go out and have an injury, it was a wakeup call in my life and I now recognize the good I have in my life; my priorities have shifted and there are parts of my life that are better.”

Della encourages others to not be afraid to ask for help and make connections with the Brain Injury Alliance of Iowa Neuro Resource Facilitation program. “I cannot say enough about this program; they helped when I didn’t know where to go or what to do. Having the letter come from the Iowa Department of Public Health connecting me to this program was incredibly helpful.” Above all, Della shares “no matter how bad things are or seem, do not give up!”

Tamika

B. ERIN COLE

B. Erin Cole, cartoonist and Exhibit Developer at the Minnesota History Center, is the creator of Little Brain, a cartoon avatar for herself and anyone else living with the long-term effects of post-concussion syndrome.

On February 7, 2016, Erin slipped and fell on a patch of ice, hitting her head and receiving her second concussion in two years. At the Bethesda Hospital Brain Injury Care Clinic she needed neuropsych testing, occupational therapy, neuro-opthamology and rest, lots of rest.

“After I had my concussion, I had a hard time expressing myself,” she says, “Visual things were a lot easier for me to do, so about six months into my injury that I thought, ‘What if I did a cartoon about my brain?’ And it just slowly took off from there.”

Little Brain began as Erin’s project for 24-Hour Comic Day, an annual event where comics creators around the world spend 24-hours producing their own 24-page comics. Erin’s told the story of Little Brain, a brain with arms, legs and a face who suddenly appears when a character – assumed to be Erin – slips and falls on the ice.

Little Brain received a very positive response from Erin’s readers. She was surprised that something she created to express what was a very personal experience was resonating so much with other people.

“There’s a post-concussion syndrome Facebook support group where I started sharing these and that’s when I started getting a lot of ‘Wow, that happened to me and seeing this expressed is really helpful.’ And I was like ‘Huh. People are finding value in this thing I’m putting together.’ There’s a lot of resources about concussions, but they all say, ‘You’ll be back to normal in six months or maybe a year,’ but there’s not a lot that talks about the long-term.”

Erin has presented at Graphic Medicine – a conference for creators who write healthcare comics and the professionals who use them. She’s sold her work at Twin Cities Zine-Fest and is working on turning Little Brain into a book-length comic. And she’s learning to work with the person she is now.

“It’s okay that this is where I’m at,” she says, “The people who do what I do really identify with what they do. And being in a situation where maybe I won’t be able to do these things anymore, it’s okay. I’m still a good person. I’m still worthy of things. I’ll find a way to do whatever it is I can do.

“I can do pretty much anything; I just can’t do everything. I have to think about what is realistic today. I’ve been asked, ‘Are you going to write a book out of your dissertation?’ And I’m like, ‘I draw a cartoon brain!’ But. I think people are going to get a lot more out of the cartoon brain.”

B. Erin Cole’s work can be found on Medium.com @berincole, on Instagram @littlebraincomics and on Tumblr @berincole.tumblr.com.

Tamika

TAMMY

“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.”

Tamika

STEVE

My name is Steve. 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.

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. 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.

Tamika

SHEILA

“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.

One day at work my boss showed me a flyer he received about the BIANE Conference. 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 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!

Tamika

DANIEL

“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.”

Tamika

ANDY

“The analogy I use to describe suffering my 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 brain injury support group meetings and I will be trying to persuade other brain injury survivors to tell their story at the state-wide Brain Injury Alliance Conference March. In doing so, I hope to encourage brain injury survivors to get involved in their own recovery through the various avenues offered at the conference and through the BIA-NE.”

Tamika

LAMYRA

7 years ago, I was having a wonderful time on the final night of an executive management conference at the National Harbor Gaylord. My fellow cohorts and I had enjoyed a black tie event, Donna Brazile was the keynote speaker, and by this time, we were at the rooftop lounge overlooking the nation’s capital. Little did any of us know that in the next hour or so, my life would forever change.

On my way downstairs, I stopped to dance to the Cupid Shuffle line dance. It was then I felt my neck pop, face start to tingle, and legs go numb. That very moment, my life changed. I had a ruptured cerebral aneurysm (subarachnoid hemorrhage (SAH). By 1:00 a.m., I had been transported from the Gaylord to Fort Washington Hospital. Only for Fort Washington to transfer me to Washington Hospital Center in DC. As the minutes passed, I became more critical and was clinging to life and my survival rate was diminishing. But God was not through with me yet.

For the remainder of February, I was in and out of consciousness. I barely remember February 2012. Additionally, I was paralyzed from the waist down, and struggled to find the words to make a coherent sentence. Through physical therapy, I had to learn to walk again.

Through God’s grace and mercy, look at me today! I am beyond blessed. My life will never be what it was prior to that infamous Friday night. That person is no longer. Sometimes, I miss that Lamyra. But then I quickly remind myself that I am blessed and that person had to leave so that I could become the person that I am today. I am still alive and can be a blessing to others. There is life afterwards. I have a new normal, but there is life. I believe I was left here to be a witness for others to learn from my experience. For me to make sure that others know the risks, signs, and when to get help. And to show that if you are blessed and fortunate enough to survive an aneurysm there is life afterwards. Others must benefit from my unfortunate experience.

I am grateful that God had me in the right place. Grateful for my family and friends that encouraged, supported, and prayed for me. I refer to February 11th as my “Life-versary.” Please join me in celebrating 7 years of life. Miracles do happen!!!

Tamika

LORENZO

We first met Lorenzo when he was struggling with uncontrolled seizures, aggression and drug use. He wasn’t involved in any meaningful activities, and wasn’t on good terms with the family members he was living with. He was refusing to take his seizure medication or see doctors.
After gathering resources from the Alliance and framing his challenges in the context of brain injury, Lorenzo and his family members began a journey toward a new beginning for his life.

He started regularly attending a day program, reconnected with doctors to help regulate his seizures, and became an invested brother and son to his family. He began using the TBI Fund to meet regularly with a life coach who helps him practice life skills and serves as a weekly mentor. Thanks to Lorenzo’s family and support from the Alliance, he now has a better home life, improved family relationships, goals and the willingness to work towards them. Through connection to the Division of Vocational Rehabilitation Services, Lorenzo works part time with the goal to transition to full time work!

Tamika

NEETU

“The last thing I remember is my surprise Drake-themed 30th birthday party. I had just come back from an awesome bachelorette trip to Belize that my friends threw for me and a few weeks later, on March 10th my fiance and friends surprised me with an epic birthday bash. I remember feeling so loved and appreciated, and lucky to have so many people who cared for me. And I had so much to look forward to: I was going to Cabo the next weekend for my friend’s bachelorette, I had just accepted a permanent position with Comcast, which was the best job I had ever had. I also had two of my closest friends getting married. I was also getting married. I remember being excited about the upcoming year. What I don’t remember, is the pain in my calf that I had complained about, thinking I had pulled a muscle at the gym. The next thing I remember is waking up in the hospital, disoriented, unable to move my body nor see clearly. The pain in my calf was a blood clot that on March 13th, broke off into smaller clots and travelled into my lungs causing my heart to stop beating, and the lack of oxygen resulted in damage to my brain.

Most of the damage was to the part of the brain that affects motor planning, my ability to remember and perform steps to make movement happen, such as brushing teeth or washing hands. After three weeks in a coma, I suffered from drop foot, which is weakness in my ability to move my feet. Because my feet didn’t move for so long, my Achilles shortened. After three and a half months in rehab, and almost a year of doing everything I could to stretch my feet, I finally had surgery on February 28th to lengthen my Achilles tendon. Next week is a year since everything happened and some days I just want to give up. But then I remember how lucky I am to be alive and improving, how many people support me and are rooting for me, and how I owe it to everyone to get better.

I still have a lot to look forward to: walking again, learning how to dance again, traveling again, going back to work, joining a gym and of course, get married. The only problem is nothing is set in stone because I don’t know how long my recovery will take, so all I can do is keep working hard. Please follow me on Instagram and check out my blog to keep up with my journey: @navsoneet and http://navsoneet.com”

Tamika

ALEX

“I don’t remember much from my car crash almost 14 years ago. It took me on an unexpected journey that changed the course of my future. On June 4, 2005, having just completed my junior year in high school, I was in a single-car crash sustaining a severe brain injury and collapsed lungs.

Around dawn, I fell asleep at the wheel of my Nissan Maxima, rolled in the freeway median, remained in a coma for over five months, and was sent on a 228-day journey through health care facilities in Boise. Just weeks before the crash, I had turned 17, and helped my Timberline High School lacrosse team win the state championship as their starting goalie. Setting higher expectations for myself than anyone else dares set for me shaped my foundation before the crash, and kept me determined on my long road to recovery.

About a month after the crash, the brain MRI showed diffuse axonal injury. The Neurosurgeon told my parents I would probably not wake up and would remain in a vegetative state the rest of my life. He also said that my young age and excellent physical condition at the time of the crash could aid in my recovery. I’ve always been confident, opinionated, and strong-willed; so my parents persevered on the hope that if anyone could prove the doctors wrong, it was me. The brain is an astonishing, but puzzling organ of the body. Its capacity to heal and recover is miraculous, even with the worst brain injury. The long months after my car crash brought many new changes and challenges for me with small steps towards recovery.

I spent 19 days in the ICU at Saint Alphonsus Regional Medical Center, 34 days on their Neurological Unit, and 3 months on the Subacute Rehabilitation floor. I had a ventilator, chest tubes, tracheotomy, J tube, Peg tube, catheter, and wheelchair. My treatments included splints and a JAS device for my right arm, botox, and physical, speech, and occupational therapies. I’ve been told I endured a lot in the healing process but remained a strong fighter through it all. I’ve also been told it literally took a village to care for me at Saint Alphonsus. I was treated and cared for by 15 different Doctors, 30 Registered Nurses, countless Certified Nursing Assistants, 15 Physical Therapists, 8 Occupational Therapists, 4 Speech Pathologists, 2 Dieticians, 1 Neuropsychologist, 8 Respiratory Therapists, 6 Housekeepers, and 6 Therapy Dogs.

Saint Alphonsus was my “home” for 4 ½ months. While still in a minimally conscious state, I was transferred across the street to Life Care Center of Boise. I was there for 2 weeks when something miraculously happened. It was the dawn of a new day, a new life for me when on November 13, 2005, the nurses at Life Care woke me that morning and I said “Good Morning”, proving that I had regained full consciousness. It was a very special Thanksgiving that year for my family and me! My awakening allowed me to encounter different challenges as I experienced the re-learning of many things, including swallowing, eating, speaking, standing, and walking.

After spending 37 days at Life Care Center of Boise, I was moved to The Idaho Elks Rehabilitation Hospital. It had been a very long road just to get across town. I spent 6 weeks at The Elks as an in-patient where I continued to receive vital stimulation and intense physical, speech, occupational, and recreation therapies. I was discharged to go home on January 17, 2006. It had been over 7 months since my crash and I was finally returning home.

Recovery from a brain injury such as mine involved extensive rehabilitation. My days became weeks and weeks became months. I participated in an intensive 8-week-Out-Patient Program at The Elks. I also participated in a homebound high school program, vision therapy, private physical therapy, acupuncture, dental care, Interactive Metronome, summer school, and sessions with a personal trainer. Failure has never been an option for me as I am determined to do my best and give my all in everything I do. It is amazing what a person can accomplish when they never settle for good enough. These beliefs have driven me as I continued to make progress.

In the fall of 2006, I returned to high school as a senior and graduated from Riverstone International School on May 24, 2007. I was accepted at The College of Idaho and received a generous 4-Year Scholarship. In May 2011, I left college with 94 credits, having majored in Psychology.

My car wreck took worlds from me but I have been finding new life in every day. I have been forced to re-interpret the adage: ”life is what you make it.” I can now more openly and unreservedly recognize my own appreciation for living. I may have scored some tough points for my wreck but I can’t think of a better lesson learned than the value of life.

My traumatic experience afforded me with a plethora of amazing and non-refundable gifts. First and foremost, surviving the crash was a gift. I must admit there’s nothing that gives you such an outlet by which to enjoy this life, as almost losing it. I now consider myself to be the extra-fortunate-recipient-of-a-very-lousy hand, and I am more than proud to play it. The gift of survival has helped to shape my outlook on life now.

The opportunity to view life from a new perspective is a gift I now choose to acknowledge and appreciate. This new perspective gives me a better recognition of the elements which make up the magnificence of life. For me, life is magnificent because of the spiritual presence which guides my future. I would like to think the crash happened for a reason. What has resulted from my experience is the motivation to share my story with people and make an inspirational impact about faith, hope, and perseverance. God’s miracles happen every day. That I lived to tell my tale is a miracle. Now I live my life as if everything is a miracle.

Another gift bestowed on me is the feeling of anticipation I never had before the crash of looking forward to each new day. Striving to face daily challenges and the determination to never give up has shaped my attitude throughout my recovery. Now this attitude prevails in my day-to-day life.

The willingness to let be what I cannot change is an additional gift. I believe in not looking back but instead, keeping my eyes toward the future. My memory loss is a gift as it helps keep me in the present. I can only ever really see what is in front of me now and live in the moment, with no regret or remorse about my life.

While I don’t remember the crash or my prolonged period of limited consciousness, there are many important things that I have learned from my life changing experience. Don’t take a minute of your life for granted, fear less, hope more, prayers do matter, and appreciate the love of your family and friends. Make today the best day you have ever seen and tomorrow will be even better.”

Tamika

RENEE

Five years ago, I was brutally beaten, strangled and left to die by my father. This is not easy for me, and even that is difficult to say. It has been more bleeding than writing. But I have finally realized that in order to heal I had to open my heart and connect. This is a first for me – to blast through my fear and be vulnerable.

I was beaten and abused – sexually, physically, emotionally – by my father, throughout my life. I was raised in complete fear. I was never allowed to speak. Abuse also came from others, the darkest kind, the kind that delights in destruction. My mind, body and spirit were destroyed. The shame, trauma and degradation made me isolate. I denied my TBI. The only way I knew how to survive was to deny, and I was constantly in survival. I had no one to talk to. No caregiver, no love. I didn’t know what love was. “I love you” was always a pre-cursor to abuse, and I only wanted to hate and judge, even myself. I only wanted to keep people away.

For my entire life I’ve pretended to be human, taking on different characters and personas. Everywhere I went, I performed to be accepted, even as an actress living in Beverly Hills. Even in the limelight I felt invisible. I shut out everyone in order to survive, yet found myself always taking care of others. I never belonged. I didn’t fit in. My family called me crazy.

I used to be articulate and words came easily for me. I won awards for my writing. Debate team. Was voted most likely to succeed. Now when I speak it’s a “kersplat” – a spattering and sputtering of words. It’s much easier for me to communicate through sounds, images, music. My theme song? “Shine on You Crazy Diamond.”

I have an insatiable need to end suffering. To be the love and family for others I never had. To be an advocate for others. I’ve learned to be compassionate with myself for the first time, and my “beautiful broken brain” has led me to my heart. Now it’s my responsibility to share my story, because I’ve learned how it might help someone else. I know the interlink of joy and sorrow. I know that from our greatest pains come our greatest gifts. I’ve lived the injustices of the system. I know good can come from evil. I am an indestructible being of light. I am Tinkerbell with an uzi.

People so often think that those with brain injury are crazy. What’s crazy is the judgement. Even when we educate people – in our families, in our healthcare systems, in our judicial systems, in our communities – how do we get them to care? Along the way I’ve had the chance to work closely with our Vietnam vets, who, like me, have fought and traveled the heroes journey. From them I learned about brutal beauty, to be a high-stepper soldier, to accept what is, to take responsibility for myself, and to go within.

“Hatred expressed as anger will lead to destructive action. Compassion expressed as anger leads to positive change.”

My brain and my heart duke it out daily. It’s a continual process.

Gracefully yours,
Glorious Madness

Tamika

JOE

Joe Russo was an active adrenaline junky who enjoyed the good life, fast motorcycles and mountain bikes. Before his accident he cooked on TV, raced mountain bikes, and enjoyed being very social with his family and friends. He always made the most of life and was fortunate enough to receive his TBI from a mountain bike accident on May 4th, 2014. Adding the TBI to ADHD, dyslexia, job change and a myriad of other life changing events, he found himself in a bit of the TBI fog. With only remembering 10 hours at a time, change and personality and a new look at life, he had to step out and look at life in a new way. It took another 2 years to form a circle of family, friends and community that supported him to achieve a life moving forward. Connecting with Brain Injury Alliance of Utah brought the much-needed connection with a great community of other survivors, activists and other care givers. During this outreach he discovered his love for mindfulness, yoga and how to appreciate his new life.

He is currently happily married to his wife with 4 teenage girls and two big dogs.

I also used to cook on TV before my accident but not after. Here is one video – https://www.youtube.com/watch?v=XhZXxiJtnpU&t=200s

Also here is the link to the news link where I was interviewed about my TBI and yoga – https://www.ksl.com/article/46530906/avid-mountain-biker-finds-healing-through-yoga-after-traumatic-brain-injury

Tamika

JACK

In 2012, I was 16 years old and I loved to play football and rugby. I played on a local rugby team and for my high school football team. Coincidentally, during the spring rugby season of that year I got two concussions within a month of each other. Then later in October, I got a third concussion. After my last concussion, my family could tell something was wrong with me. It was apparent that my overall mood had changed and my brain wasn’t functioning the same way it had before. School became harder for me to focus on and my motivation started to decline. I became so discouraged and my life felt it wasn’t worth living. I couldn’t move forward without leaning on others.

By seeking help, I found out that I had a Mild Traumatic Brain Injury from the three concussions. I didn’t respond well to this news and I didn’t want to accept that I had new, more difficult challenges in my life. It became frustrating that life before felt familiar and now I was faced with a challenge that I wasn’t prepared for emotionally. My family provided the emotional support I really needed at that time. It was difficult to admit and express how defeated I felt especially to people outside of my parents. It was so abundantly clear how much my parents cared about me and I could see this through their persistence effort to get me all the help I needed. One of the biggest blessings my parents helped me understand was the the gift of patience and compassion. The meaning I associated with patience and compassion was central to happiness. I began to discover that I had a relationship with myself and it strengthened the foundation I had with others.

Seven years later, I am still learning this lesson over and over again. This lesson is a constant reminder and a way of how I evaluate my life. It means I am my best ally and my worst enemy too. Just acknowledging that I’m human and make mistakes makes me feel connected to others. We all fail and have our own struggle. They help us have meaning and purpose.

Tamika

ERICA

When you look normal and you can still manage to pull a 4.0 GPA at times in high school people, including your family, tend to believe that you are just fine.
When you can think clearly enough to call 911 after being punched in the face by an airbag, people -even medical providers- also tend to err on the side of thinking you are fine.

It can be a real challenge to find the help you need, and for people to understand that you need help, when you are intelligent and you look fine. It can be devastating how people sometimes respond to you when the injuries you have are hidden inside your skull.

I have had two significant TBI’s. The first from a sledding accident when I was 12 and the second was from a car accident when I was 39.

After the car accident, I told the officer and medical providers that everything went black but I did not think I had blacked out completely. However, upon coming to (from the blackness), I was immediately emotional, confused, everything felt off, and I was limping even though my leg did not hurt. Later I would find out I would need surgery on that ankle. I saw a doctor that day and asked about head injury, he blew me off saying they don’t really do anything for concussion.

I almost immediately started having PTSD type of symptoms as things I was feeling -the emotions, the headaches, dizziness, nausea, and other things- were familiar; I had been through this before. It was especially interesting because my brain, though tired, crazy emotional, and forgetful somehow knew how to accommodate and it was as if I could feel it rerouting at times. I tried to explain this to the various medical providers I saw.

They did not seem to understand or want to.

Fortunately, I found a neuropsychologist who -just in the knick of time- saw right away what had been denied for months by the previous treating facilities. I was also very fortunate to have found the BIA of Utah and they listened. They invited me to their annual conference. I cried so much there because, for the first time in my life, I was really realizing just how much TBI has affected me, my relationships, and various aspects of my life. It felt so good to be in a place with other survivors that understood things I had been so alone in dealing with for so very long.

It took over two years, after the car accident, before a doctor would order an MRI; yet, it was still not for TBI treatment or understanding but rather to help me figure out the hand tremors I now have. However, the TBI findings were both validating and heartbreaking. MRI showed visible and physical evidence of both TBI’s. It is physical evidence of the seriousness of the second injury that was missed and dismissed by medical providers.

Sadly, because I was not treated to the level of seriousness of the injury, and because I was experiencing PTSD and then a form of bipolar disorder with mania (to a level I had not previously reached) and that was left untreated for so long, the effects were possibly even more devastating and damaging than the first TBI that happened at age 12 -that TBI was a closed head injury brain bleed that showed the size of a quarter on CT scan back in 1991.

The MRI also showed a pituitary tumor and other anomalies that could have been contributing to my very bizarre mood instability and reactions to the previous neuropsychologist and institution that missed or dismissed the mania. The EEG also showed evidence of TBI and possible seizure activity. I am now finally getting answers and treatment options open up with the knowledge of what is happening inside my head.

Fortunately my new care providers, consisting of a new neuropsychologist and a psychiatric PA, had gotten me on a mood stabilizer a few months prior to these tests so my stirred and mixed emotions in response to the test results have been manageable. I also had someone from the BIAU I knew I could talk too, and that has helped immensely.

Prior to these new allies, I lived with and had to learn -mostly independently- how to cope with and handle the effects of TBI and I can tell you it can be a very lonely and hard journey. Stigma of TBI and mental illness is still very real and can be very harsh.

But I have learned, adapted and evolved and there are silver linings. For example, I like to joke, due to the neuroplasticity necessary to recover and adapt after TBI, my brain knows how to make connections that normal brains don’t even know exist. I am often much more adaptive and much less afraid in a variety of challenging environments. I am also often more aware of potential risks. I have a much easier time forgiving and offering the benefit of the doubt when people make mistakes because I am so keenly aware of how a person can be themselves and not themselves at the same time. In generaI, I seem to be much more aware of human duality and how to manage it than many of my non-brain damaged peers.

TBI is a tragedy and a major trial but we can still be valuable contributing members of society. I hope that my story will shed light on some of our realities. I hope it may bring hope to those who suffer from TBI and are trying to understand and come to terms with their own new norm. I hope to be a resource for survivors and caregivers; a resource that is not solely focused on how difficult we are and how difficult it is for our families and caregivers to handle us.

We are often dismissed and discredited and our voices go unheard, but we are also tender and tough and our voices are worth listening to. TBI is not a contagious disease and it is not an end all, it is the result of injury or illness. Survival is a second chance at life worth celebrating and when people give us a chance and love and support us through the trials of it, they may just find that we are really good at celebrating life and those around us.

My name is Erica Vellinga Saxton and this is a small part of my TBI story.

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