Richard McManus
Ron Leonard
Ron was born on October 13, 1937, in Roseburg, OR. His parents, Frieda and Eugene Leonard, were farmers from Kansas who moved there during the Great Depression looking for work. He had one older brother, Gordon, who was both his idol and co-conspirator throughout life in terms of mischief.
When Ron was young, his family moved back to a farm in western Kansas, outside of the small town of Quinter. He worked on the farm from a very early age, often rising before dawn to tend to the fields before going to his one-room schoolhouse. He and Gordon would also go hunting for quail and doves in the morning before school, and so he grew comfortable using close-range firearms.
When he was eight years old, “Ronnie” began playing peewee football. At that point in 1945, all the players wore leather helmets and limited pads. Ron was a three-sport athlete through high school: football quarterback and halfback, baseball pitcher, and spring track sprinter. His teammate and good friend Gene Tilton remembers them both having their “bell rung” multiple times, shaking it off, and being put back in the game to continue playing.
After high school, Ron was recruited to play baseball at Kansas State University but pivoted to play football as a quarterback. He spent one year there before taking a sabbatical to “find himself” as a milkman in California. This also could have been a result of having “too much fun as a freshman and not enough time in the classroom,” in his words.
Ron returned to Kansas and transferred to Fort Hays State, starring as a quarterback for his final three years. He recalled multiple instances of suffering concussions, including crashing into an opponent’s bench after an especially fierce tackle in the rain. He recalled that he “came back to, in the huddle,” and barely remembers the rest of the game.
After a successful athletic career at Fort Hays State, Ron graduated with a biology degree and began to teach high school for several years. However, as much as Ron loved teaching and mentoring students, he felt a deep need to serve his country and pursue adventure in the military.
In 1963, Ron was commissioned into the United States Air Force, following his brother Gordon’s path as an enlisted man in the USAF. At the same time, Ron was recruited for the USAF inter-military football team and continued to play there. However, after two years in the Air Force as a communications specialist, he again grew restless in a desk job.
Through a fortuitous contact, Ron managed a one-time transfer into the U.S. Army with no loss of rank. It came with one stipulation – he would have to attend Airborne and Ranger School. His extreme and arduous training prepared him tremendously for extended combat in South Vietnam in 1966. He often remarked that the lessons he learned during those long days and nights saved his and others’ lives in Vietnam.
In November 1967, Ron and his company were at the center of action on Hill 875 at the Battle of Dak To. As Captain and company commander, his involvement and determined heroism are detailed in the book “The Long Gray Line: The American Journey of West Point’s Class of 1966” and “Dak To: The 173rd Airborne Brigade in South Vietnam’s Central Highlands, June-November 1967.”
For his service and bravery, Ron was awarded multiple military medals, including the Distinguished Service Cross (second in recognition only to the Medal of Honor), Silver Star, and several Purple Hearts due to injuries suffered during his career. He was shot in the leg and had a grenade explode in his proximity, leaving shrapnel in his torso which would remain for the rest of his life. At one point, Ron’s compass was shot off his wrist while lying on his back. He was also exposed to blast injuries while calling in air strikes and survived mortar attacks, along with the continuous trauma of being exposed to high caliber firearms at close range.
After his first tour in Vietnam, Ron returned to the U.S. and was honored to be selected as an instructor/cadre at the Ranger school in Florida. During the “jungle phase” of the Ranger course at Elgin AFB, he met Dabney Osbun Delaney. Dabney remembers many times where Ron would jump out of airplanes and “bounce” landings, a military term for a parachute failure and a hard landing. He finished his Army career as a Master Jumpmaster, having completed more than 150 airborne operations, i.e., “jumps.”
Approximately 18 months after they met, Dabney and Ron were married. In 1971, he headed back to South Vietnam as a district senior advisor. At one point in time, it was reported that there were no American survivors in his district. Fearing he was MIA or killed, Dabney and their new daughter, Kathryn, waited for information while stationed in Hawaii. A few days later, Dabney received a note from Ron saying he was alive, lying in a ditch, and had been calling in air and artillery fire on enemy positions.
Altogether, Ron ended up spending 28 years in the military with the Air Force and the Army. His service included stations at Fort Bragg, NC; South Korea as the battalion commander of the 2nd Infantry Division in the DMZ, Fort Leavenworth, KS; Carlisle Barracks, PA; Fort Stewart, GA; Fort Monroe, VA; Fort McNair, DC, as an instructor at the National War College, and the Pentagon.
Ron retired from the Army in 1991 and began working as a defense contractor in the Washington, D.C., area. He was stationed at the Pentagon on the morning of September 11, 2001. He and a friend were walking to get coffee when they noticed a female passerby who appeared lost. They reversed course, escorting the young woman in the other direction down the hall. Several moments later, American Airlines Flight 77 struck the Pentagon, crashing into the area where Ron and his colleague had originally been heading. After several hours of no contact, his family learned he had taken it upon himself to hold the door open for thousands of Pentagon personnel fleeing the building.
After many years of combat and defense contracting, Ron officially retired in 2005. He continued to drive thousands of miles to assist with his grandchildren’s care, and to satisfy his love for “packing, moving, and anything orderly.” Ron’s physical health remained excellent, competing annually in his age group at the Pentagon’s Army Ten-Miler.
Slowly, over the next decade, those who knew Ron best began to notice changes. His stories became disorganized, and he confabulated more. He became moody and withdrawn at times and exhibited some uncharacteristic aggressive behavior. At the request of his family, Ron was evaluated by his military health team at Fort Belvoir, VA, between 2016-2017, and was diagnosed with mild cognitive impairment (MCI). As a proud former athlete and military hero, this was a shock to everyone, especially Ron.
In 2018, Ron was inducted into the Army Ranger Hall of Fame at Fort Benning, GA, and spoke to the audience when receiving his award. It was clear at that time he was struggling to communicate his thoughts and was frustrated by his limitations.
As his disease progressed, Ron struggled to function at home. In the spring of 2020, COVID struck and the family was forced into isolation. This period was especially difficult as he also lost his loyal dog, Jack. Going from walking the dog several times a day and exercising, Ron now retreated to sitting in his chair for hours at a time. Dabney noticed a decline in his mood and ability to function on his own.
Ron became dependent on Dabney for most tasks, like what groceries to pick up at the store, how to get home, and grew progressively more confused. In addition, he began to lose significant weight and have sleep disturbances. Ron was often awake multiple times during the night, wandering around and trying to leave the house to go “home.” He would forget the relatives and pets who had passed away and ask where they were.
The family made changes to the home, altering locks to prevent Ron’s wandering and sundowning, removing stove handles, and enlisting a wonderful aide who came and spent time with him during the day. Together, they sang and danced, something he loved to do throughout his life.
In the fall of 2022, after several disturbing episodes where Ron angrily tried to force his way out of the house, it became clear he could not safely be managed at home. Dabney and the family quickly, but reluctantly, decided to move out of their 30-year family home and into a progressive senior retirement community with associated memory care.
On December 1, 2022, Ron moved into his individual room at The Sylvestry Memory Care Center at Vinson Hall, in McLean, VA. The following day, Dabney moved into an independent living apartment across the street. She visited daily and watched as he became quite serene in this new environment. Ron became one of the favorites among the Sylvestry staff. He was known to be a gentleman by all the workers at the facility. As a military retirement memory care center for dementia patients, he was surrounded by other ex-military officers, some of whom he had served with during his career.
On March 19, 2024, Ron passed away peacefully after a brief illness, with family surrounding him. He died with dignity and will be buried at Arlington National Cemetery in late August 2024, with full military honors. In his last hours, the family decided to donate his eyes, brain, and spinal cord to the UNITE Brain Bank.
Ron started contact peewee football at age eight, suffering repeated brain injuries well into high school and college. As a decorated Army Ranger, he also endured multiple blast injuries and stress related trauma. We firmly believe the combination of the two arenas contributed to his rapid decline and ultimate diagnosis of Alzheimer’s dementia and CTE.
Our hope is that Ron’s unique situation of being a high-level athlete and a combat veteran will contribute significantly to the CTE community. If his donation helps identify serum markers which can be used to diagnose and limit further damage during one’s lifetime, his legacy will truly live on indefinitely.
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:
- Are you, as a mother and as a wife, doing your best for your family every single day? The answer: Yes!
- 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!
Not Just American Football—Surviving Probable CTE
Warning: This story contains mentions of suicide that may be triggering to some readers.
I would never, in a million years, have thought a decade of repetitive head impacts could cause a neurodegenerative disease in a 32-year-old female. Trust me, if it wasn’t personally happening to me, I wouldn’t believe it. But it is, and my brain is dying before my very eyes. It is heartbreaking for my husband Andrew to witness. I am lucky to have his unconditional love, his understanding, and his unwavering support.
I share all of this publicly with complete transparency for the sake of CTE awareness, so when I am diagnosed with CTE postmortem, these words will be here to provide an account of what it’s like to live with this disease, in hopes we can prevent it. If I can’t turn my suffering into something meaningful — into something positive — then what is the point? My only wish in life is to alleviate the suffering of others, and I hope that my attempts to shed light on this horrendous disease will help to do just that.
I started playing soccer and heading the ball at 6 years old. By the time I was 9, I already knew what I wanted to be when I grew up: a professional soccer player and a doctor. As I got older, my passion for soccer and my love for science only grew. Like most athletes, I was extremely competitive, driven, and goal-oriented. I was also willing to play through anything. My pain tolerance was through the roof, and I had an innate desire to excel at everything. I once somehow played half of a game with a broken collarbone because I didn’t want to sit out. By halftime, I walked off the field and finally went to the ER.
Between playing soccer for a club, my school, and the US Youth Soccer Olympic Development Program, I was involved in the sport practically year-round from age 8 to 18. I earned a scholarship offer to play at Louisiana State University, which I officially signed as a high school senior. I lettered my freshman year but only got playing time in seven games my true freshman season. This was not enough for me. After the season concluded, I wanted to transfer to another D1 school where I could make an immediate impact on the field. I went on official visits to Appalachian State and College of Charleston, accepting an offer from the latter. It was truly the perfect-sized program for me, and I was able to secure a starting spot as a center midfielder in the fall of 2010, my sophomore year. But after playing through a series of concussions that season, I was never cleared to play soccer again.
My first diagnosed concussion was not until I was 19 years old. I have no idea how many undiagnosed concussions I sustained over the years. My parents can remember tournaments where I took significant hits, but I always eventually got up and kept playing. We never thought anything of these hits, and we definitely didn’t realize something as seemingly minor as heading a soccer ball could have any long-term neurological consequences.
In hindsight, the first sign something was wrong with my brain was the excessive, inappropriate weeping — and my inability to stop it. I had no clue this was a concussion symptom. No one ever told me, so how could I have known? At the time, most doctors didn’t think the two were related.
I couldn’t lie this time and say I felt OK enough to play. I couldn’t even get a word out between the profuse sobbing. So, I was finally forced to sit out, officially in concussion protocol. No school, no contact, no running, strict rest. Being a stubborn athlete, I was secretly running and training the entire time. In my defense, I didn’t know there would be a cumulative effect to my brain and that the symptoms could or would be permanent. I thought the pain of pushing through these concussions would be fleeting. I certainly didn’t realize it could mean my symptoms would be persistent. I also didn’t realize the number of repetitive impacts I was taking would put me at risk of developing a neurodegenerative disease.
I also suffered from cognitive deficits, making it nearly impossible for me to finish my undergraduate degree. It took the next six years to finish my last four remaining academic semesters. Before my concussions, school was always easy for me. I was a pre-med biology major with a 4.0 GPA. After my concussions, simply sitting through a three-hour science lab was absolute torture. I could not function like before and had to drastically reduce my course load. I swapped out medical school for a more realistic goal of becoming a nurse practitioner. Still, I was determined to fully recover, get my old brain back, and live life on my own terms.
Along with the cognitive deficits and crying spells came the suicidal depression. It’s worth noting that prior to my concussions, I did not even believe in mental illness. I thought depression was circumstantial and people who claimed to suffer from it were simply making excuses. In a matter of months, I went from not even believing in mental illness to experiencing depression so severe I was barely clinging to life.
To this day, the suicidal depression remains the most difficult for me. I am fortunate antidepressants work for me, because I don’t think I could survive otherwise. Admitting this doesn’t make me weak; it makes me honest about the damage to my brain. I attempted suicide twice in my early 20s, when I was still drinking alcohol. I quickly learned alcohol and my brain do not mix well anymore.
It wasn’t just the suicidality that worsened, but also the rage. By my mid-20s, fits of rage started popping up more and more. I had been dealing with suicidality and other post-concussion symptoms for about five years when the rage began. I also became increasingly sensitive to alcohol, and one beer actually made me attack and bite another person like a wild animal when I was 27. I have not touched alcohol since. These rage episodes are scary enough when I am sober; adding alcohol to the mix is like throwing gasoline on a fire.
I’m not sure when it became evident to my family and I that this was not just PCS anymore, but something much more serious. These events over the years made it obvious my brain was getting worse, and we might be looking at a whole different beast: probable CTE. One thing you must know about my story is I always assumed I would make a full recovery from my college soccer concussions. I wasn’t resigning myself to the fact that I probably have CTE and giving up. Three months of hyperbaric oxygen therapy, countless neurorehabilitation stints — vestibular rehab, cognitive therapy, you name it. I tried everything in the books for a decade.
While working towards my goal of becoming a psychiatric mental health nurse, I took a job in the behavioral healthcare field after earning my degree in 2016. Then, only six months in, I was assaulted by a patient. I have no memory of the event, but I was jumped and tackled to the floor, dragged across the floor by my hair, and kicked and punched repeatedly in the head. This, after sustaining a serious concussion (again, on the job due to a patient assault) three weeks prior. Both of these incidents were devastating. I had just moved to Nashville and worked so hard to bounce back from my career-ending concussions sustained during college soccer. Years of post-concussion symptoms meant spending most days confined to a dark room battling suicidal ideation, debilitating migraines, extreme sensitivity to noise and light, and disabling cognitive deficits. But I persevered and completed my degree, got engaged, and planned to enroll in Vanderbilt’s accelerated BSN program.
Unfortunately, the concussions I sustained while working in behavioral healthcare made my symptoms worse. I can no longer hold down a job at all. But here’s the thing — my brain was already worsening before these concussions. My fine motor skills were deteriorating and the cognitive deficits I dealt with were not getting better. My suicidal depression also kept getting worse, requiring higher doses of the antidepressant that works for me. The concussions from work were simply the final straw.
Please take concussions and CTE prevention seriously. The scariest part about having probable CTE is neurobehavioral dysregulation. It leads to violent behavior with no basis in reality. I’m not sure if there is anything more terrifying than witnessing yourself fly off the handle, screaming at the top of your lungs, physically violent, filled with rage and suicidality, all while being completely unable to regulate it. This disease makes one a monster at times. Andrew has learned to spot the signs — the dead look in my eyes, the irrational anger, the terror. It is partially traumatizing for him to see me in these states, but I am grateful to have someone that loves me through this disease and can see and appreciate when the real “Kelly” is present.
As my probable CTE progresses, I also have days where I am not “here” mentally. Andrew says he can tell whenever I’m absent. “It’s like you’re not really there; you’re not behind your eyes. You’re completely gone,” he says to me through tears. “I just miss my Kelly, that’s all.” He is right. I am cold, empty. My expression is flat. The life behind my voice is gone. I can’t even think. I feel like the walking dead. I have no idea where I’ve gone. All I know is that I’m not here.
These types of days, filled with vacant eyes and blank stares, are popping up more frequently. I am sad for my husband and how he has to witness my mind and personality deteriorate in front of him. I don’t think this is how he pictured our 30s. He has to cope with little losses of me on a daily basis. Degenerative brain diseases like CTE are devastating for the entire family. I am not ready and don’t want to fade away, but I will try to embrace this next chapter with grace and dignity as I hold on to myself with all I can.
For the past 13 years, what I originally viewed as a journey of recovery has gradually shifted to one of acceptance. I have found the most solace and comfort by being brutally honest about my situation and accepting my brain and this disease for what it is.
Fortunately, there are some treatments that have helped. Medical marijuana specifically has improved my quality of life tremendously these past three years. It keeps me present when I appear to have that lifeless look in my eyes. It also helps with sensory overload, fits of rage, and my suicidal depression. I’ve also found a medication which regulates my behavior. It not only prevents the random inappropriate weeping, but has eliminated so much of my anger episodes. Last but not least, the antidepressant sertraline has been a lifesaver.
In addition to neurobehavioral medication, I lean heavily on my support system. My family fully supports me and understands CTE. They have been with me on this journey every step of the way. I am forever grateful for these amazing human beings whose love has often been the catalyst and motivator for me to hold on and endure. I’ve learned over the years that support can come in many forms. My dogs often help me get out of bed on days where I do not have the strength or willpower to do so myself. I have found myself reaching out to the Concussion Legacy Foundation through their CLF HelpLine (thanks guys!) more times than I can count over the past 13 years. Please know that you are never, ever alone.
It’s important to know even if all your support systems seem to fail, you are stronger than you realize. If I can survive this, so can you. I know it can feel overwhelming when the darkness hits. I know it’s impossible to feel even a sliver of hope things will ever get better. You need to remember the only constant is change; that these feelings will pass, and that you will be reminded again life is worth living. I have been at rock bottom a million times, my brain yearning for death by my own hand, but I have learned to find the light in the darkest recesses of my mind. And if there is no light to be found, I tell myself my brain is playing tricks on me, and that to give in to the suicidal depression would mean CTE wins. I am competitive and will never let CTE win. So, I press on, and so will you! Just remember, never stop reaching out to others when you are depressed. None of us can get through it alone.
The thought of potentially alleviating at least one person’s suffering by donating my brain to CLF to support CTE research is what keeps me going and makes all this suffering worth enduring. I can’t think of a better legacy than to help contribute to research so no other athlete or veteran has to deal with what I and so many others have experienced.
Finally, my heart goes out to all those who suffered from CTE and ultimately took their own lives. I know how hard it is to have absolutely no control over the torture your own mind is inflicting on you. I know how hard it is to choose life when your brain is telling you to choose death. Rest In Peace. Your legacies live on.
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!