Perseverance and the Importance of Self-Advocacy

Warning: This story contains mentions of suicide that may be triggering to some readers.

Jill Christine’s brain injury story is one 35 years in the making. It’s a story filled with ups and downs, one Jill has been hesitant to tell. Today, at age 53, she’s ready to share the wealth of information she’s picked up along the way to help others — especially women like her who may not receive the resources they need and struggle in silence.

Born at Marine Corps Base Camp Lejeune in Jacksonville, N.C., Jill was the only child in a military family that moved around frequently. Due to exposure to chemical contaminants at Camp Lejeune, she was born with several birth defects, including a clubbed foot and hip dysplasia.

A sports fanatic all her life, Jill competed in several different sports as a child. She started off playing soccer at age five, then got into gymnastics, skating, and competitive diving. Her father was a former football player, and the family loved following the University of Michigan football team.

Two days after her high school graduation in 1988, Jill was driving her Fiat Spider when she ran over a pothole, lost control of the car, and drifted into the next lane before being hit head-on by an oncoming van. She suffered a traumatic brain injury (TBI), as her head was split open at the top, among a series of other serious injuries. Jill had to rely on crutches for 10 months, and it was three full years before she had a full set of permanent teeth. She also struggled with amnesia, losing half of the memory from her first 18 years. Altogether, Jill underwent 35 surgeries during recovery.

“The worst part about the days, weeks, and months after was the feeling that life would never get better,” said Jill.

Eventually, Jill felt well enough to enroll at the University of Michigan for her studies. But because of her recurring issues with memory, she took half semesters off, and it took double the time to graduate.

After finishing school, Jill dabbled in a few industries, including construction, before pursuing a nursing degree, following in the footsteps of her grandmother, who was the head nurse at her hospital. Upon receiving her degree, Jill joined an intensive care unit where she took care of aging patients. A few years in healthcare, however, made her realize this career path wasn’t a great fit.

“I was so fed up with the dismissive nature of people in medicine who are supposed to act like professionals,” said Jill. “It reminded me of my experience as a TBI patient and at times not being taken seriously.”

After her accident, Jill has had her share of ups and downs, including bouts of depression and thoughts of suicide. The injury impacted her reproductive endocrinology, leading to infertility and miscarriages. A bone density exam showed signs of osteoporosis, and she also developed arrhythmia. Jill had married a man in the military, but he was abusive. Her father was largely absent. The only people in Jill’s life she felt she could count on were her mother, her grandfather, and a friend named KP.

From a young age, Jill’s mother taught her we are all responsible for our own happiness. There was no room for excuses in life – if you wanted something bad enough, you had to work harder for it. Find the root cause of a problem and have the drive to get the answers you need. Adapting to any situation was important, so was refusing to quit when the going got tough.

“My mother sacrificed so much for me and is the reason why I am still here,” said Jill. “She taught me humility, kindness, grit, fortitude, but most importantly, how to function in a world blind to the challenges I faced.”

Jill’s mother also emphasized the importance of service for others – not just to help them, but to heal the soul. Going through the trauma of her accident, Jill spent many moments trying to understand the purpose of her life and why she was still here. Though she didn’t know it at the time, Jill’s experience would end up being a gift. Three decades later, she has begun to harness of the power of her injury and use her perspective in the hopes of making substantive changes for the millions struggling from the devastating effects of traumatic brain injury (TBI).

KP came into Jill’s life later as an adult. Jill calls her a woman of deep faith, a guiding light, and a true blessing on Earth.

“She possessed the strong personality traits I was struggling to understand in myself, new traits that were born out of my head injury and drastically different from the meek and quiet girl I used to be,” said Jill.

KP and Jill’s mother were pivotal in Jill’s adjustment to life with a brain injury. Though they were opposites in personality, both were incredibly loving, fiercely loyal, extremely smart women who taught Jill strength, courage, and how to survive in a world which might not understand what she was going through.

“My mom encouraged all of the softer things in me, and KP told me to stand my ground unwaveringly,” said Jill. “Between the two of them, they taught me how to take on the world with grace and be able to withstand the storms that would undoubtedly arise.”

The effects of Jill’s brain injury last even to this day. In the beginning, she self-medicated with alcohol, trying to calm the countless thoughts swirling in her head. She couldn’t understand what was happening, why she was becoming so irritable, and why she could no longer pay attention. She recalls physicians showing little compassion, ignoring her symptoms and prescribing drugs with seemingly no rhyme or reason. It didn’t help that navigating health insurance was frustratingly complex — not to mention expensive — especially once she got divorced.

“I kept running into so many dead ends,” said Jill. “I simply got a slap on the back on my way out the door and as a result, my journey has really been off the beaten path.”

In her 30s, Jill began reading everything in sight to try and get better on her own. She figured out keeping herself isolated was extremely helpful in keeping her symptoms at bay. Medical marijuana also helped, and she was a big supporter of its legalization in Michigan, where she lives. Jill focuses on a holistic recovery approach and believes many complications from injury can be treated using natural methods instead of focusing too heavily on pharmaceuticals.

To that end, one of the hobbies Jill has incorporated into her daily life is gardening, which she says has been her salvation. She calls it the best form of therapy and says it brings many mental health benefits.

“There are so many parallels between gardening and living,” said Jill. “There is a need to constantly prune and tend to your life as you would a garden. There is power in spending time ruminating in your garden and much to be learned from the renewal of life occurring each year. It’s important to know when one season ends and when it is time to till soil for the next.”

Jill has become a strong believer in patient advocacy and standing up for yourself. She wants everyone to take charge of their own health, trying out treatments until finding one that works.

Similarly, Jill also hopes her story resonates with those in the military. Though she may not have served, she says there is a unique opportunity for the VA to explore how brain injuries can affect men and women differently. She hopes the VA specifically studies female veterans who may have been exposed to chemical contaminants at military installations and how those exposures can impact their brains and bodies.

“I want to shed light on all those who once were a part of the community, either through a spouse or parent, and then simply dropped later on without the help they desperately need,” said Jill. “It’s unfortunate people who need help the most are the ones left behind. Women present the science and medical communities with a unique opportunity to investigate what has transpired inside a body like mine over 35 years, following a TBI that has systematically impacted every body system.”

While searching for solutions online, Jill happened to read about the Concussion Legacy Foundation in a news article. Exploring CLF’s website, she was impressed with the data-driven research and science behind many of its resources and programs. Recently, Jill has participated in CLF Zoom Support Groups, which she has found extremely helpful and therapeutic.

“I am so happy I can share my experience with others like me, and listen to their stories as well,” said Jill. “This community has helped me realize I’m not alone.”

Jill has many reasons for sharing her story at this moment: anger at the medical professionals who mostly ignored her and others with TBIs; proof someone with a TBI can still live, survive, and thrive even three decades later; and the desire to use her talents to help others who did not have the same resources as her. Jill acknowledges the effects of her injury evolve every year, but she is still persevering in her journey.

Through everything, Jill’s mother continues to stay with her. Though she passed away in 2016 after battling breast cancer, Jill still hears her voice every day telling her to keep going and to never lose the will to fight.

“I’ll never give up, as long as I’m here.”

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Suicide is preventable and help is available. If you are concerned that someone in your life may be suicidal, the five #BeThe1To steps are simple actions anyone can take to help someone in crisis. If you are struggling to cope and would like some emotional support, call the Suicide and Crisis Lifeline at 988 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call.

Are you or someone you know struggling with lingering concussion symptoms? We support patients and families through the CLF HelpLine, providing personalized help to those struggling with the outcomes of brain injury. Submit your request today and a dedicated member of the Concussion Legacy Foundation team will be happy to assist you.

Regaining Peace After a Life-changing Bike Crash

To this day, Jocelyn Pepe has only had one brain injury, albeit a very significant one – a concussion she suffered during a triathlon training ride. While on her bike, the former endurance athlete could not reach her brakes in time to stop and avoid a crash. She blacked out and hit her head on the side of the road but does not have any memory of the accident until being awoken by medics in the ambulance.

Jocelyn was raced to the hospital and received an MRI on her brain. The scan was clear of any brain bleed, but her jaw had been displaced and she lost two teeth. That, however, was only the beginning of her journey.

At the time of her fall, Jocelyn was studying for a master’s degree in psychology and neuroscience. She didn’t know much about concussions herself, just what she heard being around her son, who played hockey and experienced multiple concussions of his own.

In the months after she was discharged from the hospital, Jocelyn began to experience a number of different symptoms, some of which persist to this day. They included constant exhaustion, the inability to look at screens, nausea while driving, frequent debilitating headaches, and sensitivity to light, sound, and heat. It was so difficult for Jocelyn to string thoughts together she made the difficult decision to put her master’s program on hold.

One of the biggest changes to Jocelyn’s life after her concussion was navigating how she was perceived by people around her. Though she may have looked fine on the outside, she was still struggling internally.

“I felt as though people didn’t understand how difficult it was inside my head, as it was not a visible injury anymore,” said Jocelyn. “After my jaw and teeth were repaired, it was as if I was back to normal. I had to really prioritize brain recovery on my own.”

Jocelyn tried piecing together her healing slowly, working with various professionals including an oral surgeon, physiotherapist, a neuro-optometrist, naturopath, a chiropractor, and a neurologist. With their help, she started feeling a bit better day by day. After about eight months, Jocelyn was able to finish her master’s degree and gain a deeper understanding of concussions from a scientific perspective.

For now, Jocelyn still has her ups and downs but has found ways to manage her symptoms. From rest and ice compression to neuro-optometry, color therapy to realign her sight, and nerve blockers to mitigate the head and neck pain, these are among the treatments which have helped. She has adjusted her expectations on how much is possible mentally and knows there are days she might not be at her best. Ultimately, Jocelyn makes sure to consistently rebalance her physical, mental, emotional, social, and spiritual wellbeing.

“Immediately after the accident, I wanted to get right back to my triathlon training and goals of making the podium,” said Jocelyn. “At the time, that was part of my grieving process. It’s just about adjusting to a slower pace of life and turning your experience into a purpose.”

Jocelyn no longer rides road bikes or competes in triathlons. Instead, she focuses on low impact exercises which require less time commitment, including practicing yoga and taking daily walks. Jocelyn’s tried going on runs, which have been tough on her neck and head, though it’s slowly getting better.

Jocelyn’s passion for helping others led her to found TrU, a business which builds team wellbeing and healthy organizational culture through executive coaching with a mental health focus. She reached out to the Concussion Legacy Foundation after finding us on social media and relating to our hopeful content and messaging. She recently filmed her own #ConcussionHope video to remind others that healing with a concussion requires a whole-person approach. Now through her Inspiring Story, Jocelyn wants to show those recovering it’s possible to live a purposeful and fulfilling life following a brain injury.

A Former Soccer Player on Finding Her New Normal

My name is Sasha Pina, and for the past 13 years, I’ve been living with Post-Concussion Syndrome (PCS).

During a Labor Day weekend soccer tournament in 2010, I had a career-ending concussion. As I jumped up to head the ball, an opposing player elbowed me on the right side of the head, and I passed out mid-air. As I was landing, my head hit the ground and I was knocked unconscious. I was quickly admitted to the pediatric ICU where I stayed for four days. While there, my mom found out I had a grade 3 concussion, in addition to a lateral skull fracture, brain swelling, severe amnesia, photophobia, and loss of peripheral vision in my right eye. What we didn’t know was how much help I would need when it came to remembering certain things, and that this journey was far from over.

I took up soccer when I was 7 years old and played all the way through club and high school until the age of 16. The game was my passion, and I had dreams of playing in college and hopefully as a professional. I even had a college scout. I was that determined. In all my years of playing, I experienced multiple concussions but played through the headaches because I didn’t want to be sidelined. I thought they would go away on their own. But I have learned not all headaches are really “just headaches.” Sometimes it was hard to get up, but I still continued to play. I knew what concussions were but didn’t take them seriously. I don’t recall taking any classes or hearing coaches talk to us about head injuries.

With this last concussion, I had throbbing headaches that wouldn’t go away. It felt like they were never-ending, and they would sometimes even keep me up during the night. I also had memory problems, trouble finding my words, mood swings, balance issues, and trouble with concentration. During school, I had to limit my time to half-days for my brain to rest, and I was told to avoid physical activity. My friends were constantly asking why I was leaving so early. I spent six months in an extensive brain injury rehabilitation center doing physical therapy, occupational therapy, and speech therapy. Over the years my PCS symptoms got better, but now I live with other aftereffects, including seizures that started about 10 months post-injury.

In July of 2011, I was diagnosed with epilepsy after having my first seizure during a church service. I have focal aware and focal unaware seizures coming from my left temporal lobe. I take multiple medications to treat them, some working better than others. But the side effects cause me to get tired easily and struggle with memory, making certain days challenging. Fortunately, I have learned coping skills to help on tough days, and I always have amazing support from my mom no matter the situation. In February 2016, I had a device surgically implanted called a vagus nerve stimulator (VNS), a pacemaker-like device in the left side of my chest with a wire that wraps around the vagus nerve. The VNS sends electrical stimulations to my brain to prevent abnormal brain activity which can cause a seizure. It has been life-changing, and we also noticed it helping with some of my other symptoms. My seizures have come to a point where we are currently seeking other treatment at UCLA.

Life has been a roller coaster with quite a bit of ups and downs, looking for answers, going to doctors (neurologists, epileptologists, PTs, OTs, neuro-ophthalmologists), and hoping the next day, week, or even month will be better than the last. You never think how playing the game you love can end in the snap of a finger and change your life. And not just me, but the lives of everyone around me. I have lost friends because it was hard for them to see me the way I was, so they just left. Luckily, I gained some new friends, as well.

I have always been one to share my story with anyone that asks, since you never know who you can help. I am a huge advocate for brain injury and epilepsy awareness, and I am involved with a few amazing foundations. I’m an ambassador for the Danny Did Foundation, which spreads awareness for seizure detection devices and awareness on Sudden Unexpected Death in Epilepsy (SUDEP). I’m an ambassador for VNS Therapy, where I tell others about my journey with a VNS. And I also work for the Hundley Foundation, where we help families living with epilepsy and other disabilities.

I was always told that time heals all wounds. I have learned it might not heal the way you want it to, but in time, it will heal, and you will learn to adapt to your “new normal.” Take your time to recover — no one is rushing you. Focus on the good, as any progress is something to celebrate. Make sure to have a strong support system of family and friends; I wouldn’t be where I am today without them. As hard as sharing my story has been at times throughout the years, it has helped me in my healing while also being helpful to others. Take it one day at a time. Remember, you are doing the best you can! If you think someone has a concussion, encourage them to tell their coach or parents, go to the doctor, and take the time to heal.

100 Feet of Peace: Healing in the Deep

In February of 2024, I embarked to Fiji on a press trip with the Professional Association of Diving Instructors (PADI), not just to explore the soft reef capital of the world, but also to discover a deeper healing process. As a former professional minor league hockey player, I was continuously dealing with and abruptly reshaped by traumatic brain injuries (TBIs) throughout my career. I never anticipated confronting these challenges during youth and high school hockey, undoubtedly the important developmental years of life. While in Fiji, a profound realization stirred within me, as I was quick to reflect on a truth that this was more than just diving in a beautiful destination — it was about internally processing how existing in the depths beneath the surface would bring me through a recovery journey.

My Journey to Diving

My time in sports built physical and mental resilience but left me and my family struggling to navigate the delicate complexities of TBI while laboring through the rippling tax of the injury. My initial introduction to diving as a kid evoked a mix of excitement and inspiration, a gratitude I owe my dad. In 2016, I got certified as a PADI Open Water Diver, allowing me to dive to 80 feet and explore an entirely new world in the ocean. Given the effects of my TBIs, engaging in my sport was a calculated risk, one I recognized and took measures to mitigate with a team of medical professionals as I entered my junior, collegiate, and professional playing career.

I navigated those years concussion-free yet underwent a serious search to find a solution for my lingering symptoms. As I started a deep dive (no pun intended) into building out my “toolbox” of symptom relief, I discovered that my first love gave me a profound sense of equilibrium. I call it ”saltwater therapy,” a phrase I learned from surf culture in 2016 while spending a few months away from the ice. I used surfing as a trial and error of sorts in my healing journey, watching the sunrise over Pismo Beach, California. Along with other neurologist recommendations, this was a promising tool for my toolbox, a new avenue for recovery — one that involved tranquility and tapping into my flow state in the waves. It wasn’t until my first dive later that year that I started to feel a similar ease.

 

The First Dive

The first dive was transformative. As I descended into the warm waters of Mexico, the weight of gravity — and my struggles — lifted. I was enveloped by an overwhelming sense of peace; the only sounds were my breath and white noise of the depths of surrounding marine life. The anxiety and constant noise cluttering my mind began to fade, replaced by an all-consuming calm. It was a manifestation of being truly present in the moment, a practice often recommended for mental wellness but seldom achieved with such clarity.

Fast forward several years and many dives later, I was in Fiji on the PADI press trip. Exploring the variety of vibrant coral ecosystems and marine life, I find stillness and tap into my flow state, a self-expression of full release. In that moment I am “in it” and focused, yet distant and relaxed. My mind draws away from the pressures that consume me: any pains, aches, worries, or troubles. My existence transforms to connection — connection through breath and weightlessness, gratitude and love.

Diving and Mental Health

Mindfulness and meditation can be greatly helpful during concussion recovery and enhance mental health, especially for those recovering from psychological trauma or even a variety of neurological conditions. The rhythmic breathing that naturally derives from diving mimics meditative breathing techniques, which help in reducing anxiety and improving emotional stability. Each dive deepens my connection to the present, a much-needed and welcomed escape from the usual rush of symptoms and thoughts.

 

Personal Transformation

Throughout my time in Fiji, each dive seemed to peel away layers of mental strain. When changing my buoyancy in the water, I drew parallels to the physical representation of mental and emotional release, allowing me to explore depths of both the ocean and my consciousness naturally. I would not realize the physical and mental processes taking place until after the dives. The vivid colors of coral and the playful curiosity of fish always bring an atmospheric wonder difficult to find anywhere else — a sensation I find replicated in different ways when reliving moments of my life in my flow state. Diving always gives me a meaningful and gentle reminder that despite my injuries and limitations, the capacity for awe, joy, inspiration, and appreciation remained unimpaired.

Reaching into Your Depths

The art of diving is, at its core, a practice in mindfulness, which has proven to greatly aid in my mental and even physical health recovery. The focused, controlled breathing, the profound silence and stillness under the water, and the removal of everyday sensory overload contributes to a therapeutic composure hard to find elsewhere.

This realization has reinforced my perspective on alternative therapies as a means of relief and aid for others in their journey with TBI. It has also developed my passion and appreciation for diving, which I plan to pursue further. It’s a testament to the unexpected pathways or tools, as I call them, to healing, which exist in our simplest connections — with others, water, nature, faith, spirituality, and even within the quiet depths of ourselves.

Make the Dive!

For anyone grappling with mental health issues or recovering from physical injuries, consider exploring the world of diving. The combination of physical activity, mental focus, and the serene environment may offer a new dimension of therapy and joy. If you’re looking to embark on this journey, PADI caters to all levels, life situations, and circumstances, guiding you safely into the calming waters of our Earth.

Diving in Fiji wasn’t just about the adventure and the destination. It was a profound journey to wellness, a testament to the power of our vast oceans. Whether above or below the surface, it seems there is a world of healing waiting to be discovered.

Read more about Tyler’s journey in this interview with KARE 11 Minneapolis.

A Concussion Survivor Bringing Moms Together

“You guys are used to a highly verbal graham cracker!”

As Allison Moir-Smith uttered these words, her kids stared at her in confusion. What did Mom just say?

“I mean, you guys are used to a highly verbal mother!”

Though the family can now joke about the little mistakes Allison used to make, the years after her concussion were no laughing matter. The usually extroverted and gregarious therapist, wife, and mom of two was the glue that held the family together. But she could no longer take care of everyone like she once had and felt like she was letting her loved ones down.

It all happened so suddenly and in a way she could have never prepared for: in an accident. In 2018, Allison and her family had been skiing, an activity she was comfortable with, having grown up on the slopes. She remembers watching the kids ski down first, then, a moment later, her legs had given out and her head hit the hard snow. Because Allison was wearing a helmet and hadn’t blacked out, she figured she was okay and continued to ski as if nothing happened.

“I got up! I’m a mom. I got up and skied more runs,” said Allison. “I wasn’t going to wreck the day.”

Allison sensed something might be wrong when she noticed how much lights were bothering her. A visit to her primary care physician yielded a standard and uninformed reaction: “You’ve got a concussion. Just rest and it will go away on its own. There’s nothing more you can do.”

So, Allison and her family lived for a bit in what she describes as a “weird period.”

“We basically lived in the dark,” said Allison. “Deep darkness, dinner in the dark. And even though I was sitting in so much pain, I pretended to be okay because I didn’t want to freak my husband and children out.”

In the mornings, Allison would help the kids get ready for school, which left her exhausted. She spent her days lying on the sofa and just listening to the news. She continued to struggle with sensitivity to light and sound but developed additional symptoms, including headaches, nausea, and imbalance. Her favorite item became a Star Wars blanket, using it to cover herself at all times and avoid light.

 

Still, Allison tried her best to be there for her children. She went to school to see her daughter in the fifth grade play and traveled to see her son in basketball tournaments. She also helped him practice by shooting hoops, using a deflated soccer ball (since she was afraid of being hit), despite how she was feeling.

One day, when Allison thought she was better, she took her son to the basketball court to play a game. But when a ball hit her on the head, she suffered another concussion – just 14 months after her skiing accident. The symptoms came roaring back.

“I was being a good mom, playing with my son,” said Allison. “He needed me.”

 

Days turned into weeks, weeks quickly blended into months, and months became years. Because Allison’s symptoms kept her mostly at home and isolated, she became severely depressed and felt like she was failing her family. Emails to her physician regarding treatment and requests to see a neurologist were mostly ignored until she was finally able to see a doctor at Massachusetts General Hospital.

There, doctors told Allison her brain looked fine, but she had some cognitive issues and chronic PTSD from years of living with untreated post-concussion syndrome (PCS) and would benefit from seeing a speech-language pathologist. She found out she had measurable problems with memory and executive functioning and would need to learn how to manage her nervous system.

Tasks like grocery shopping and sending her children to their various activities became much easier when Allison started creating checklists, which required less working memory. She does it to this day, crossing items off her to-do list to make sure she’s not forgetting anything and overworking her brain.

To calm her nervous system, Allison’s SLP suggested she draw or paint in an adult coloring book five times daily for 15 minutes at a time. This opened a whole new world for Allison. As she healed, she left coloring books behind and started painting on watercolors, then acrylics, and eventually oils. To share her work, she created the @concussion_recovery_art Instagram account, showing others it’s okay be hurting.

The Concussed Moms support group

Instantly, on Instagram, people with similar concussion experiences started connecting with Allison, including someone who invited her to a concussion survivors group for women.

“After the groups, people would talk about being tired and sleeping for the afternoon,” said Allison. “And the mothers and I would look at each other going, ‘No way.’ Because it was 2 o’clock and we had to go pick up the kids, take them to activities, help with homework, make dinner. No one understood that except the other mothers.”

Allison developed the idea for a concussed moms support group, specifically for mothers navigating the unique challenges presented by motherhood and concussion recovery. She wound up leading the discussions when a friend could no longer organize the meetings.

In January 2023, Allison brought her Concussed Moms Patient Support Group under the Concussion Legacy Foundation Peer Support umbrella. She had heard of CLF after her accident and thought this new group would be a natural fit, where she could serve as meeting host but not have to worry about technical details.

Each meeting begins by spotlighting one concussed mom’s experience before opening up for general discussion. All are encouraged to ask questions, connect with others, and share the resources they need.

Allison shares a few notes about the group, which consists of moms in their 20s to 60s, with kids ranging from infants to early 30s:

  • No one had symptoms show up fully until after seven days, and all were told by providers they would be fine in three weeks.
  • It took over two months for all of them to get any sort of treatment.
  • They found it impossible to communicate to their loved ones, much less medical providers, the extent of their brains’ malfunction.
  • 100% of the group experienced concussion care as focused on youth and male athletes, specifically football players.

They are all so thankful to have found a group of moms who understand and live the struggle of concussion recovery and motherhood. At the conclusion of every meeting, Allison makes sure to end with two affirmations:

  1. Are you, as a mother and as a wife, doing your best for your family every single day? The answer: Yes!
  2. No matter what, your family can always feel your love.

“I think these are such important and powerful reminders for the moms,” said Allison. “Sometimes that’s all they need to hear.”

 

Outside of the group, Allison continues to serve as a concussion activist, spreading awareness through her art and speaking about her experiences in public. She has presented at the International Brain Injury World Congress as well as the Brain Injury Associations of New York, Massachusetts, and New Hampshire, among others. Her heart still breaks seeing others suffer from PCS, and preventing others from suffering like she did has become her life mission – one sharing of her story, one meeting with a peer connection, and one hand-painted drawing at a time. To learn more about Allison and see examples of her work, visit her website here.

 

The Concussed Moms support group meets at 1 p.m. ET on the first Thursday of every month. If you are interested in joining, please register here.

A Competitive Cheerleader on Impact of Concussions

For the longest time, I was always taught in competitive and sideline cheerleading to push through, finish out strong, and to always do what’s best for your team. But that was before I suffered two concussions.

My first concussion occurred in the sixth grade during gym class when I was hit in the head by a basketball. At first, my symptoms didn’t seem too bad. I experienced headaches and sensitivity to light for a couple of weeks before being pushed back into cheer at nationals in Florida.

The second concussion happened during cheer practice in my sophomore year of high school. I was holding up my flyer in a one-leg extension when she lost her balance. Her tailbone hit my head, causing me to fall back on the mat. The next morning, I had a bruise on my forehead and felt dizzy and nauseous. The lights in my room were too bright. The familiar sounds of the TV, my dog barking, and my family talking were suddenly much too loud. I was determined to get through the school day with sunglasses so I could cheer at that evening’s football game, but I only got past the first period before being sent home. I was diagnosed with a concussion at urgent care and again by my pediatrician the following day.

My days were plagued with constant headaches, sensitivity to light, loud noises, and trouble concentrating at school. Teachers did not understand that my thinking was slow, and trying to focus made my head hurt. Accommodations varied from class to class, which only increased my confusion and anxiety. Some teachers simply did not understand why I could not turn in my work after a week’s extension. My teammates called me a faker and stopped talking to me.

Concussions can be difficult for some to understand because there aren’t obvious signs of injury — no casts, scars, or crutches to show people you are hurt. I was accused of lying to get out of practice, which pained me because it was far from the truth. I was so desperate to get back to cheering that I visited my pediatrician weekly to see my progress. My recovery was much slower compared to that of the first concussion. Eventually, I was diagnosed with Post-Concussion Syndrome (PCS).

My doctor explained the dangers of returning to cheer while I was still experiencing symptoms. Another injury to my brain could prolong recovery even further. The pressure I received from teammates, coaches, and teachers made me feel like I was a disappointment. It led to isolation, depression, and anxiety. My concussion lasted the whole first semester. Even now, after a year, I suffer from symptoms. It’s still hard to focus all my thoughts clearly, and comprehending others takes time.

Though I am not yet fully recovered, I’ve decided to turn a negative experience into a positive. Currently, I am a Miss America Organization titleholder for the state of New Hampshire. I am Miss Lilac State’s Teen, and my community service initiative is “When in Doubt Sit Them Out: Awareness of Athletic Concussions.” I use my platform to inform athletes, parents, and teachers not only the signs and symptoms of concussions, but their social and emotional impact, as well.

It’s important to share your story so people can become more aware about the severity of concussions and their aftereffects. It’s so difficult to get through it alone, but knowing that others have been in similar situations and successfully emerged on the other side is tremendously inspiring. That’s why I encourage everyone to share their stories, too!

Being Your Own Advocate After Injury

Growing up, I was always an athlete. Sports were my passion, from gymnastics to skiing to soccer to ice skating. At age seven, I started softball and instantly fell in love with it. As I got older and better, I switched from Little League to travel ball, practicing, wanting to be the best I could be. I enjoyed playing any position, but nothing appealed to me like catching. I loved being involved in every play.

A few years ago, I was at a softball tournament just like any other weekend. I was behind the plate, and there was a runner on third base. On a ball hit to the infield, she ran for home, where I was ready to make the tag. The throw came to me, I caught it, but the runner ran straight into me, knocking me to the ground. Eventually, after getting back up, I felt like I was spinning, and my head hurt like crazy. My coach asked me if I was okay and if I could finish the game. I chose to ignore the fact my head hurt, so I said yes and played the rest of the game. After it finished, I still had a headache the whole way home. When my headache and other symptoms did not go away, my parents figured I had a mild concussion. I took a few weeks off, and once I felt better, I went back to playing as usual.

About a year later, my teammates and I had a team bonding party. There was a small dunk tank, and I was sitting on the chair waiting for my sister to fill the bucket above me. I was too stubborn to move, and she ended up accidentally dropping the entire bucket full of ice and water on my head. Just like before, I had constant headaches that would not go away. My parents took me to the doctor, where I was diagnosed with another concussion. Once again, I took time off from softball until my symptoms were gone, then continued playing.

A few months later, I was at another softball tournament catching as usual. There was a runner on second base, and the batter hit a line drive to left-center. The runner was at third by the time our outfielder (my younger sister Brecka) got the ball, so she sprinted for home. The throw arrived like a bullet into my glove. I was ready for the tag, making sure I was out of the baseline. But the runner did the worst possible thing she could have done: instead of sliding, she ran straight into me, elbowing my face and knocking me down. Topping it all off, I took off my helmet right before we collided so I could see the ball better. My head slammed the ground, which left me lying there crying hysterically, unaware of what had just happened. The girl was immediately ejected from the game for not sliding and elbowing me in the face. I went to the dugout unable to lift my head up and eventually vomiting. I did not want to leave the game even if I couldn’t watch, because I wanted to be there for my team.

My dad took me to the ER to make sure there was no brain bleed or other issues. While doctors found no signs of a brain bleed, they did tell me I had a concussion. For weeks, I constantly had awful headaches and felt terrible all day. Eventually, my symptoms improved and I again went back to playing.

In January of 2023, I made my high school softball team as a freshman. I was super excited, knowing I would learn a lot from the coaches and older players. After our second game of the season, I was at practice catching routine fly balls in the outfield. I went for the first fly ball but lost it in the sun. Instead of catching it, it hit me directly above my eye. I took a little while to sit down and ice my head, waiting for the athletic trainer to come and clear me to return to practice. He told me my eyes and balance seemed a little off, so we called my mom to pick me up from practice. I once again developed nonstop headaches along with sensitivity to light and noise. The doctor told me I had suffered another concussion. However, my symptoms did not go away. Only after about a month did things get a little bit better. I went back to school and was able to resume classes.

The week I was supposed to get cleared to rejoin softball, I was in gym class doing homework on the side (since I couldn’t take part in activities just yet) when a volleyball hit my head. It took me a minute to realize what had just happened. Fortunately, my friend who saw everything had the good sense to take me to the nurse. The school called my mom, and we went back to the doctors to see if this incident set me back again. Unfortunately, because it was a separate hit, it was documented as a fifth concussion, and I was back to square one.

My freshman season, our team made it all the way to State. It has been one of the best experiences in my softball career. I was so excited to go and be with my team, but a part of me wished I could have been playing. We wound up as the Florida Class 3A State Champions for the second year in a row. We received our medals and were all excited, but there was a part of me that felt like I didn’t deserve the medal. Little did I know, other people felt the same way. When I posted a picture of me holding the trophy, someone commented that all I had to do was watch the game. These kinds of comments make situations like mine so much worse.

One of the difficulties dealing with concussions is there’s no way to prove you have one, so people sometimes don’t think they’re real. They may feel it’s just for attention, but nobody knows how I am feeling except for me. That meant I had to be an advocate for myself. When people are negative, though, it leads you to not want to say anything, which just makes the headaches worse. I’ve missed countless trips to amusement parks, concerts, boat days, and so much more because I knew if I went it would just slow down the recovery process.

It’s been months since my last concussion, and I still get headaches constantly. My family and I had to make the difficult decision to let go of softball and move on to a sport with less contact like tennis. It sucks to have to let go of what you love the most, but the risk was bigger than the reward at this point. I can’t wait to step into a new chapter in my life.

Please help me support the Concussion Legacy Foundation by making a donation through my page. Thanks so much for reading my story, and please share it with any friends you may think may be going through the same experience!

IMpowering Others After a Life-Changing Accident

Siobhan Lacey-Chow seemed as if she had everything you could want in life. She had a close circle of friends and family, spent most of her free time traveling, and was peaking in her career as an Executive at a company she loved. When Siobhan was younger, she dabbled sometimes as a model and enjoyed the fashion industry. But she was yearning for more and decided to join the corporate world in the food sector. Siobhan was responsible for driving deals and was passionate about introducing people to delicious, healthy, and nutritious food.

Siobhan Lacey-Chow & Peter Tharos (Actor, Producer & Film Director)
Event: 
IMpower-The Act of Learning to Love Yourself, September 2022

That all changed in May 2014. Siobhan had just returned home after successfully closing one of her organization’s first National deals. She finished her two favorite gym classes back-to-back in Uptown Toronto and was stopped in traffic on a beautiful sunny morning. The next thing she knew, she was rear-ended by a driver speeding in a van. Her car veered off the highway and her memory went blank. She doesn’t remember much about the immediate time afterward.

Doctors told Siobhan she had to go into isolation because her brain was swollen. The following days, weeks, and months were a roller coaster of emotions. She was angry and frustrated at the situation. The circumstances felt so random.

“Why me?” Siobhan recalled asking. “At the time, my career was everything. And now it was all taken from me.”

There were many moments of downward spiraling, since she had lost most of her motor abilities and had to relearn many of the normal, everyday actions we all take for granted. Walking. Speaking. Even just thinking was a challenge. And it didn’t help that the only place she could recuperate was at home with her ex-husband.

For the next six months, Siobhan decided she had to set goals for herself. She needed tangible results to see if she was making progress. She would test her memory and time how long it took for her to read a certain passage. Once the times became shorter, she knew her motor skills were improving. It was, and still is, a delicate balancing act. She has always been a go-getter, but could no longer push herself past her limits like she had done so often in the past.

Siobhan Lacey-Chow & Peter Tharos
Event:
 IMpower-Lighting Your Brain on Fire, November 2022

The experience undoubtedly was humbling to Siobhan. So many simple, daily activities she once could do without hesitation were difficult. It provided a different lens into the lives of those with disabilities. She was also forced to become comfortable with the uncomfortable.

“I had to learn self-love and compassion towards myself, and that’s not always an easy thing,” said Siobhan. “There were days I wanted to stay in bed all day. But I had to find it in myself to redirect my energy any way I could.”

Once her perspective shifted, Siobhan knew she had to rebuild her life. She craved her independence and wanted to get back to work instead of surrendering to despair. What helped the most was coming to the realization she was not alone in her journey. There are others just like her who are going through this struggle, others who have it just as difficult, if not more so. And again, she set goals for herself. Sometime after the accident, Siobhan bought heels with the hope she’d be able to wear them once she was better. And through hard work and dedication, she put them on while walking the carpet at an award show event months later.

Event: Canadian Women in Food – FULL TILT, March 2023

Siobhan acknowledges her recovery is a roller coaster and some days are easier to manage than others. Fortunately, she has trained herself to get through difficult moments. She will pause to reflect and understand it’s completely acceptable to feel this way.

While researching online for resources, Siobhan came across the Concussion Legacy Foundation website. The personal stories resonated so much with her she pledged to donate her brain to the Research Registry.

“It was so personal to me, and brain donation is the only way for researchers to see what will work in the future to help others,” said Siobhan.

These days, Siobhan is dedicated to lending her voice to the voiceless. She has become an Inspirational Speaker and Advocate for Mental Health and has made it her life’s purpose to share her experiences with others, proving anything is possible against all odds. One of the initiatives she is passionate about in Canada is changing the wheelchair sign symbolizing disabilities. There are people with vulnerabilities not necessarily visible to the eye, and she hopes to empower all of them through this hopeful change.

Siobhan Lacey-Chow & Cheryl Appleton (Founder, Canadian Women in Food)
Event: 
Canadian Women in Food – FULL TILT, March 2023
Photo Credit:
Valentina Giorcelli: Food Photography

To that effect, Siobhan recently created her own IMpower movement on behalf of anyone facing life’s adversities. Her message delves into the fine art of building self-awareness, embracing the consistent dance with self-acceptance, and actively choosing the IMpowering route of self-advocacy, all while sharing tools and strategies that served her, in navigating and continuing to navigate, the journey of bringing her innermost, authentic desires to fruition.

Siobhan Lacey-Chow & Jessica West (Founder of Tresor, Podcast Host & Author, The Empower from Within Podcast)
Podcast: 
The Empower from Within Podcast, January 2023

“You don’t necessarily need a catastrophic injury for my messaging to resonate,” says Siobhan. “The best part is, these tools are applicable to anyone. We have the power to choose and create the life we desire, to author the chapters of our lives, all while IMpowering ourselves to do so, should we choose, or not – the choice is ours!”

Through it all, Siobhan wants everyone to remember her life’s simple motto:

“When there’s a will, there’s truly always a way.”

To follow Siobhan’s IMpower initiatives, visit www.siobhanlaceychow.com.

To connect with Siobhan, she can be reached at [email protected].

The Hidden Danger of Tackle Football

I created this animation to support the Concussion Legacy Foundation’s Flag Football Under 14 program. My family was impacted by the loss of my uncle, Shane Dronett, a 10-year NFL veteran to CTE in 2009. This animation is to honor my uncle and help educate families of the risks of playing tackle football before age 14. I am thankful that Chris Nowinski and the entire Concussion Legacy Foundation has given me the opportunity to share my project.

Gretchen Evans on Hope After Military TBI

Image from ESPN Press Room

CLF: What was it like to join the Army in 1979?

GW: It was a couple of years after the end of the Vietnam War. My NCOs were Vietnam veterans. They’d just started integrating females into basic training companies. Our drill sergeants were all males. They got thrown in the deep end of the pool, but they did a stellar job. Their leadership and training were pivotal to my success in the military. Then I went into intelligence. I remember of 150 people that were in my class in Airborne School, there were three females and there were no female black hats in my company. So again, there was a learning curve for everybody. Things have evolved over my 27-year career, from uniforms being separate, to now the same. Now women can serve in every MLS that they can qualify for, and I think that’s awesome. I’m delighted to see that anyone who wants to serve their country can if they hit all the marks.

And then we talk about brain injury. I saw stars a couple of times. We laughed it off and took Motrin to relieve the pain. This last injury, had I not been hurt in other ways, I wouldn’t have seen a doctor and I would have died on the battlefield. I had a swelling brain they caught in time. The medical care saved my life.

CLF: How did your TBI impact how you handled things as a leader?

GW: I needed to write things down. I sat in meetings taking copious notes because my recall was dissipated. I picked and chose what I wanted to remember. I felt like there was a limit of information that my brain could hold, recall, and process. I relied on other people. Also, I was not sleeping well. I attribute this to combat, stress, leadership, all those things – but I really think these things were caused by the multiple head injuries that I had.

CLF: I think that’s commonplace. We want to persevere, and we don’t want to realize we have an injury that’s going to stop us from doing what we want to do. That’s a bumper sticker for TBI and PTSD.

GW: That’s why I love what you do. I went through 90 percent of my career unaware. I don’t want other servicemembers to do that. There are things you can do to mitigate your symptoms and maintain quality of life. That’s what brought Team Unbroken to the surface and that’s why Project Enlist is important. We don’t want these injuries to define who you are or what you can accomplish.

CLF: How would you classify your TBI?

GW: Mine was considered severe. I blew up my eardrums as well as having severe brain swelling. It damaged important nerves in my brain. My biggest symptom is a little bit of cognitive delay. Something as simple as you look at something like a folder, you know what it is, but for like two seconds, you can’t recall what it’s called. 90 percent of the time I’m high functioning, but 10 percent of the time, [not as much].

CLF: You’ve done a great job of mitigating that.

GW: But it can be humbling. That’s another thing I want to touch on. I think people know they have a new injury before they want to admit it. There are signs and symptoms. Bad news is not like wine, it doesn’t get better with age. So, if you think you have a brain injury, you should get checked. It’s a simple process.

CLF: Good point. When you had your serious TBI, you were with a group of soldiers assaulting an objective. It was unique at the time but not going to be as unique moving forward. We’re going to find more women subjected to the dangers you experienced.

GW: It’s only getting bigger because like I said, now women are going to be leading infantry companies in units engaged with the enemy. The amount of brain injuries is going to increase because even in training, people get hurt all the time.

CLF: You can see why TBI is a signature wound of the last 20 years of warfare.

GW: Absolutely. I don’t know if I have any military friends who don’t have some sort of brain injury from being in service. You’re running around, jumping around, dropping out of airplanes, throwing yourself on the ground. You’re constantly putting yourself at risk for head injuries. It’s like playing football every day. Think about how much we wear a soft cap when we’re in a place where you should have a helmet on. A lot of head injuries happen that way.

CLF: I love the picture behind you because it’s skydiving. 

GW: I got to jump with the Golden Knights. In the beginning it was a struggle, getting severely wounded like that. Part of you wants to survive and the other part wants to thrive. You want to start thriving before you’re well enough, so you have a lot of failures. I will say this: the people around me really helped me overcome these injuries. Now I think I’m living the best life I possibly could. I don’t even think about my brain injury until I can’t think about what a folder is or something. I decided that I wasn’t going to let my injury define me. I want to help as many people in my position as I can. I want to advocate for those who can’t advocate for themselves. I’m doing the same thing I did before, I’m just switching uniforms.

CLF: It’s important to take care of yourself so you can help take care of your family and friends and be that person you’re meant to be.

GW: Educate yourself. Part of my healing was learning about my injury. I read things, went to classes, engaged with organizations, Wounded Warriors and all these other people out there that are setting up services. You can learn about your injury and listen to other people who had the same injury as you and how they navigated it. That’s why I think this veteran network we have is powerful.

CLF: You pledged to donate your brain to Project Enlist. Why?

GW: I want to be part of the solution. Even if donating my brain after I’m not using it anymore can help one person, it’s worth it to me. If a doctor can open this thing and look at it and think, ‘oh, this makes sense to me now.’ It could go back to the type of helmets we were wearing. If I donate my brain and they figure out how to help people who already have head injuries or are even born with head injuries, to me, that’s a win-win for everybody.

I’d just like to say to all the female Veterans out there, I would encourage them to donate their brains. We want our granddaughters down the line to get the best care, the best equipment, to prevent them from possibly having a life-altering injury. Let’s all take that pledge and donate our brains to help others.

Join Command Sgt. Maj. Evans and donate your brain to Project Enlist here.

You can read more about Sgt. Maj. Evans by reading her book available here.