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Scholarship Winners Tell Their Story

Colburn Law

Colburn Law Traumatic Brain Injury Annual Scholarship Winner Submissions:

Sarah Renberg

Sarah Renberg

ESSAY: Are you an advocate for your community or involved in any organizations? How has your experience dealing with a brain injury inspired you to educate and shape your community and neighborhood for the better?

A brain injury forces an individual to exercise astounding resilience. One must re-evaluate one’s values, shift priorities, slow down, and embark on an exploratory mission to find a lost identity. It is a terrifying, often frustrating, challenge that requires tenacity and a bit of stubbornness, but also an open mind and willingness to adjust. This is all done amidst the trials of relearning basic functions and the struggle to exist in a too loud, too busy, no longer recognizable world. A brain injury is a catalyst for learning. My experience taught me to appreciate my supportive community, value health, acknowledge others’ hidden suffering, and to live presently rather than worry too far into the future or dwell on the past. Inspired to find purpose in what had happened and wanting to use what I learned through the rehabilitative process, I sought to create positive change in my communities. I helped start a successful nonprofit, have shared my story with multiple audiences as an advocate, co-founded a peer mentorship program through the University of Michigan’s Honors Program, and have also started working on a wellness-promoting initiative for Honors students.

In October 2014, I suffered brain and neck injuries while playing ice hockey. My suspected concussion was mismanaged and I continued to play. I took another hit to the head, resulting in substantially more serious injuries that caused extensive physical and cognitive impairments, some of which still affect me. After hundreds of hours of rehabilitation enabled me to read and write again, I helped launch the Headway Foundation, a nonprofit that aims to improve concussion management through education, patient support, and advocacy. I sought to find purpose in my story, help others with brain injuries, and make sports safer.

As Headway’s Program Development Coordinator, I helped create and implement our annual concussion safety awareness campaign. In 2019, over 4,500 athletes, across youth leagues and the NCAA, participated. I helped oversee educational initiatives including a webinar series and maintained a support network serving over 250 people struggling with their own injuries​. Headway is currently researching its programs’ efficacy but, based on feedback from participants, we have been effective in promoting change. Examples include helping start dialogues about the importance of symptom reporting in locker rooms nationwide, providing comforting ears, resources, and care packages to support network members, and improving supportive measures in public school systems. The countless hours I have poured into Headway were worthwhile, knowing that I have been able to affect positively both the sports and brain injury communities.

I have had the opportunity to share my story and advocate the patient, athlete, and student perspective at a variety of events ranging from local sports team meetings to numerous medical conferences to a Congressional briefing. I have appeared on local television news programs and podcasts, ensuring a wider reach for my message of hope and resilience. I take great honor in being able to provide a voice for those affected by brain injury and in letting them know they are not alone. Beginning to speak publicly also showcases my important transition from a sullen, quiet teenager, embarrassed by her new limitations to a confident young adult who embraced her path, newly empowered to make a difference and eager to try new things. Finding this sense of self and pride was critical to my being able to self-advocate at school, giving myself the grace I needed when challenged, and ultimately succeeding as an Honors student at Michigan.
I have also worked to address the growing mental health crisis on campus.​ I spoke at a presentation made by the student government’s Mental Health Task Force last August that shared data on students’ self-reported mental health.​ I provided insights to faculty and staff about stress I’ve experienced dealing with the effects of my brain injury while maintaining an A average. I also shared the worrisome content of many late night talks with anxious friends and examples of interventions involving suicide and alcohol abuse I’ve witnessed. With regard to stress and emotional strain, college and brain injury rehabilitation are similar. Both involve numerous challenges, instances of forced change, identity exploration, and perceived failures. I believed the lessons I learned through rehabilitation would also serve my fellow Michigan students.

Reflecting on how I relied heavily on support and advice from others to recover and transition successfully to college, my friend and I proposed a Peer Mentorship Program to the Honors Director. Together we worked with Honors staff to launch a program that involved older students hosting office hours, community-building events, and help sessions on academic planning. As a mentor, I used my personal experience to counsel others in rebounding from failure, having mental flexibility to shift perspectives, and thinking through strategies to adapt to a semester’s demands. The expressed relief of students after our brief sessions and their success after adjusting based on our chats was extremely rewarding. Implementing this program has reaffirmed my desire to give back and my ability to do so.

Additionally, to combat the mental health epidemic within the Honors Program, I am using my experience to help create a wellness initiative. In order to recover from my injuries, I needed to take advantage of what I could control within my situation by prioritizing certain habits. I credit meditation, exercise, intentional nutrition, good sleep, and focussing on meaningful relationships with my ability to now live an independent and happy life. I believe teaching cognizance of wellness will benefit my peers. This inspired me to work on a program
which will hopefully involve sponsored activities like yoga, hikes, nutrition education, and peer-facilitated discussions about mental health. Ideally, students will think deeper about what constitutes wellness in their own lives and adjust based on their individual needs. While this initiative will have to start small, I hope to track participants’ academic performance and self-reported quality of life in order to determine its efficacy and expand.

My brain injury forced me to think harder about daily life, be it the knee drive and even steps required for proper gait or how to focus on my breath in the overstimulation of a grocery store. This increasingly complicated existence, coupled with the emotional upheaval I experienced, resulted in abundant learning. Wanting to find purpose in my injury, I sought to use what I had learned to create positive change in my communities. I’ve found through the efforts I’ve described that I can create a widespread impact by using my voice, developing programs, and leveraging a team-based approach. This is only the beginning.

Kimberly N. Cusack

Kimberly Cusack

ESSAY: Are you an advocate for your community or involved in any organizations? How has your experience dealing with a brain injury inspired you to educate and shape your community and neighborhood for the better?

Filled with fear and insecurity, I felt my stomach sink as my art teacher said, “We will be creating self-portraits.” Outside of class, this wouldn’t be a problem. I could scroll through Instagram and choose a perfect photo topped with a glowing butterfly filter. But in that moment, as my teacher took the photo, I had no makeup to fill in my splotchy brows and no filter to slim my square face. I was forced to draw my features close up complete with dark circles, pale skin, and frazzled hair. My brain compressed as I shaded, erased, redrew each minute crevice of my face. My hand, eager to cease, swiftly placed the final freckles on my cheek. I leaned back ready to wallow in pity. However, as my eyes lingered over the piece, I realized that there was another reason why I didn’t want to draw my face.

When I was two years old I was diagnosed with Arnold Chiari Malformation, genetic brain malformation, and Ehlers-Danlos syndrome, two life-threatening medical conditions. I reminisced to the Lisa Frank stickers that embellished my neck brace, and the Crayola chalk that decorated the grey bricks of my hospital room. The days I missed in kindergarten so I could re-learn how to speak, the months sacrificed recovering from two brain surgeries, the year I was held back in the third grade and the lifetime of self-consciousness all came back to me. The familiar sting of lies that bounced off my tongue about my age and my health. To my friends I was Ms. Anonymous; to me, my shame became my identity. One I needed to hide.

By the sixth grade, I found my mask by following Youtube drawing videos. Step by step, line by line, an awkward dance I mimicked until my art looked decent enough to impress my peers. Smooth and silky was the skin of the celebrities I drew. They were flawless. Easy to replicate, easy to understand. They made my life feel effortless. I didn’t have to analyze my illness and feelings of isolation, nor did I have to imagine a better life for myself; I simply colored over it.

Staring at my own face, free from filters and bearing all its flaws, a decade of weight came crashing down. It initiated a spark that sent me trailblazing. Art was no longer a mask I could use to silence my emotions. Now it was a megaphone that I wanted to pass to every person who felt as if they didn’t have a voice.

Starting small, my sophomore year I continuously donated my art to True Justice International, an organization that rehabilitates victims of human trafficking. Each piece was exchanged with a smile and a conversation about the dangers of the crime. While these conversations were short and informal, through them I became a voice for the victims who couldn’t speak out. Many survivors of human trafficking have been severely abused by their traffickers and suffer from varying degrees of traumatic brain injury. Each piece of art that I donated fueled me to expand my influence. As a result, I co-founded the first High School anti-human trafficking education and awareness club in the region. As president, I collaborate with the community and coordinate fundraisers to raise much-needed funds to help provide safe housing, food, clothing, education, and medical treatment for survivors.

By junior year, I had joined Beyond the Diagnosis, a traveling art exhibit displaying portraits of children with rare diseases. I painted a portrait of Madeline, a young girl diagnosed with hypomyelinating leukodystrophy, a disease that slowly destroys the myelyn of the nerves of the brain that will slowly paralyze her as she grows older. While capturing her cheek to cheek smile, I reflected on how having a rare brain disease had robbed my confidence as a child and how no child should have theirs taken away. Today, as her face adorns the walls of medical facilities around the world. I hope that her portrait will give her the strength she’ll need later in life. Her portrait will be exhibited next at the Broad Institute in Boston for two months in recognition of Rare Disease Day in February, 2020.

By facing the challenges that plague society’s unseen, I have pushed myself to be bold in the type of art I create. I often find myself wondering how I can mix art, technology, and the issues that concern the next generation. Today, I am eager to face and guide others through the problems that silence people around the world.

I plan to enroll in a Fine Arts Program at an accredited University. I have recently applied to and have been accepted to several Universities, including Virginia Commonwealth Univsersity (VCU ARTS), Arizona State University, East Carolina University, North Carolina State University, and Savannah College of Art & Design. During my upcoming college career, giving hope and a voice to others with neurological brain conditions, traumatic brain injury, and victims of human trafficking will continue to be my passion throughout my journey.

Amanda Wendt

Amanda Wendt

ESSAY: Are you an advocate for your community or involved in any organizations? How has your experience dealing with a brain injury inspired you to educate and shape your community and neighborhood for the better?

Living with a rare disability, I have encountered many challenges in my life. When I was nine, I got a very rare, progressive brain disease called Acute Disseminated Encephalomyelitis (ADEM), classifies as an acquired brain injury, which was triggered by a bout of pneumonia. This brain injury attacked part of my brain that involved my balance and coordination, my eyesight, and my speech.  When I was first diagnosed, I was unable to walk and ended up using a wheelchair for a period of time. I spent weeks in a Children’s Hospital out of state away from my family. I was getting treatment and intense inpatient rehabilitation and therapies to help me with my balance, strength and coordination. I then spent many months during 4th grade while still going to school part time, in outpatient rehabilitation and therapies.

This disease impacted my brain, making learning and speaking a greater challenge for me. Although learning and keeping up in school became an increased challenge, I never let it prevent me from my school goals.  I learned to advocate for myself and realized I might have to work a little longer on my school work, but I could still get very good grades.

I had to work hard in school, really hard. Thanks to my school accommodations, I was able to be successful in school. I went to years of speech therapy to help deal with my speech that had changed after my diagnosis. My thoughts were harder to organize and communicate, and I had a stutter, or disfluency.  I continued to get speech therapy up to my senior year in High School.

I improved my skills as I got older and more mature. I gained confidence over time, as I was doing well in school, and could see I was getting good grades. Over the years, I was able to take increasingly higher level classes.  Also, I learned to become a strong advocate for myself if my needs were not being met, or I needed help with more advanced tasks.

I have through my experiences realized how important being my own advocate is and people you are advocating to usually are very willing to help you when they see you have a real passion to learn/understand something but need a little extra assistance to learn new concepts. I know through my life people may often be able to do certain things faster than I can but as long as I work hard and keep focused on my goals I can achieve anything I want to achieve.

Because of my challenges, I learned how to set and achieve goals when obstacles were put in my path that were out of my control. Sometimes these obstacles were difficult to overcome, but with perseverance, hard work and determination, my goals could be achieved. This experience has shown me that there will likely be challenges in life which will be more difficult to me and take me longer than other people, but if there is something I have a passion to achieve I can accomplish it.  I also learned from this experience, that having the support of others helped to motivate me, knowing that other people believed in me and my abilities.

Volunteering in my community has always been a significant part of my life. I find it very rewarding to give back to my community and to help others to make a positive impact to society. I am committed to improving the lives of others. My community service has made a significantly positive impact on my life, knowing I am improving our community and realizing I am helping people that may need a little or a lot of help to get through life.  It is very rewarding to see people when they are happy and smiling and enjoying the moment they are in or when they realize they are able to accomplish something.

Community Service is important to our society because it provides a service to people who need it the most and allows for a lasting long term positive impact on the community. Community service builds cooperation and brings people together to achieve a common goal. Volunteering in the community helps to strength our compassion and empathy for others and to work for a stronger future for everyone.

I have been a Girl Scout since 2007 and along with doing volunteering at numerous locations like Nursing homes, food banks and Operation Shoebox, I have also earned the Girl Scout Bronze, Silver and Gold Awards. My Bronze and Silver Awards were focused on sewing cheery child friendly pillow cases for sick children at Children’s hospitals to give them comfort and to brighten up their sterile, scary hospital rooms.  This is all important because I also was that child in the children’s hospital in Philadelphia at age 9 in need of extra support when I was given a fun pillow case giving me hope and a smile at I time I needed it thanks to someone else’s community service.  In 2019, I earned the prestigious Girl Scout Gold Award, only six percent of girls earn this prestigious Girl Scout Gold Award. I chose to focus my Gold Award project on educating the community and beyond, on the seriousness of life threatening Food Allergies, since my sister has food allergies and I have seen the struggles she has had to deal with. Food allergies are considered a disability by the Americans with Disabilities Act and an estimated 32 million Americans suffer from this disability. Providing awareness of food allergies in my community and beyond, created a more compassionate community of people that will take responsibility to help and care for each other.

I recently received the 2019 President’s Volunteer Service Gold Level Award for over 250 hours of Community Service in one year. The Corporation for National and Community Service has recognized and appreciated my commitment to strengthen our Nation and communities through my volunteer service.

I feel my community service has benefited people in numerous ways.  I have helped people with short term immediate needs through the food pantry and the Feed My Starving Children organization and long term, by helping special needs children at Mission Cognition with their social skills development.  I have provided positive experiences for the community through visiting the senior facilities and through my food allergy awareness program helping children with allergies have a special day and learning experience focused on them.   I have provided a smile and hope through my sewing of cheery child friendly pillow cases for sick children in the children’s hospitals to bring them comfort and to brighten up their sterile, scary hospital rooms.

I plan to major in Medical Laboratory Science at Monmouth University in the fall with the goal of working in a hospital where I will be able to provide support to others who will be in need of special medical assistance.  I have chosen this career based on both my love of science and math and because of the previous support I have received from the medical community.