In honor of Brain Injury Awareness Month, BIANJ is spending the month highlighting the struggles and triumphs after brain injury. Join us as we share stories from survivors, caregivers, and family members. Together we can inspire hope and raise awareness of brain injuries and their lifelong effects. If you’re interested in sharing your story, contact us at firstname.lastname@example.org.
As a nonprofit 501(c)3 organization, we rely on the support of individuals throughout our state to insure that people affected by brain injury have access to dedicated professionals and advocates, and vital resources and support services. Individual contributions allow us to supply free educational information, to develop and provide prevention initiatives, and to advocate for all those in need in our New Jersey communities. To support our programs and services, click here.
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!
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!!!
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.
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.
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!”
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.”
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.”
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.
As a nonprofit 501(c)3 organization, we rely on the support of individuals throughout our state to insure that people affected by brain injury have access to dedicated professionals and advocates, and vital resources and support services. Individual contributions allow us to supply free educational information, to develop and provide prevention initiatives, and to advocate for all those in need in our New Jersey communities.