Every time I go to the Krempels Center in Portsmouth, New Hampshire, I’m inspired by the members, staff, and interns. It’s a community program for people with Acquired Brain Injury (Traumatic Brain Injury, Stroke, Brain Cancer, Anoxia from Heart Attack, etc.) There’s so much love, caring and sharing of heartache which is always followed by words of wisdom and stories of courageous convictions and perseverance. Sometimes something special happens in a group which inspires me to write an article.
The Krempels Center has many groups which are meant to improve the quality of Brain Injury Survivor’s lives such as: Brain Injury Strategies, What’s Cooking?, Man Cave, Let’s Get Fit and Brain Games to name a few. The groups are led by Staff and Occupational Therapy, Speech-Language Therapy, Recreational Therapy, Social Work and Psychology Interns. They provide non-clinical therapy, but I’ve participated in many groups where the therapy and support I received was more educational, uplifting and memorable than some clinical therapies I’ve had as a result of my Traumatic Brain Injuries.
The goal of the Krempels Center is to reintegrate people with acquired brain injury back into the community. Members start by getting acquainted with the Krempels Community, which is housed in the Community Campus, a large three-level building with a full gymnasium, kitchen and dining area and, multiple classrooms. Then they’re given opportunities to explore, participate in events and provide brain injury education in the local, regional, nationwide and worldwide communities.
Yesterday began a new semester for new interns hoping to gain a wealth of experience working with over 100 Brain Injury Survivors and their family members. Led by seasoned staff, they timidly got in front of the community to explain the groups they were going to lead and encouraged members to come to their group. Soon they will realize that mentioning they brought chocolate and other snacks will greatly increase the number of members participating in their groups.
One group I don’t need to be enticed with chocolate to attend is the Community Education group because, even though there are millions of people who get an acquired brain injury every year, many people (friends, family, co-workers, etc.) don’t understand the short- and long-term consequences of such injuries. These injuries often happen in the blink of an eye and leave even the strongest of relationships with family, friends, and co-workers in ruins.
Brain Injury Survivors learn their quest to get back to being their old self again is like bailing out a sinking boat with a bottomless bucket. Eventually, they learn (months, years and decades later) their quest wasn’t about trying to be their old self, but to embrace the new person they’ve become. This has got to be one of the hardest challenges after suffering a brain injury, which is often delayed by the survivor’s own lack of education and misconceptions about brain injury, stigmas which prevent someone from asking for help and unwillingness to give up the life they once worked so hard to achieve and live.
At the same time they must deal with people who don’t understand what they’re going through. Several members and I were given an Educating Others about Your Brain Injury worksheet in the Community Education group. Our group leader explained to us that outreaching to the greater community often first starts with educating people we already have a relationship with now or had in the past.
What happened over the next openly candid, emotional, gut-wrenching, teary-eyed 45 minutes inspired me to write this article. Although I’m not going to share with you who participated in the group, or what was said, I am going to share with you my observations and my completed worksheet.
It’s obviously clear to me that when I see a Brain Injury Survivor let down the façade they’ve been holding up for so long to show others how strong they are, I see someone who is cognitively, emotionally, behaviorally, physically and sometimes spiritually broken. Many Brain Injury Survivors (but not all) don’t like who they’ve become. Through it all they persevere to live. Broken.
I watched unfold in front of me (just like I’ve seen so many times before in groups) a Brain Injury Survivor’s brief teary-eyed, emotional breakdown. I look into their eyes and into their hearts. I feel the pain they have because I too have lived it myself.
And then it happens! The seemingly fragile Brain Injury Survivor becomes a hardened Brain Injury Warrior melded by an ongoing whirlwind of loss, heartache, suffering, discrimination, embarrassment, pain and suffering. They emerge to do battle armed with acceptance, knowledge, courage, words of wisdom, empathy, understanding, and trust.
With whom do they do battle with?
Okay. It’s time for me to bring the whole battle thing down a few notches, but I hope you get my point that Brain Injury Survivors are like all other injury survivors. They are Warriors who turn misfortune into an opportunity to educate, advocate, build a foundation for healthy relationships, build trust and take control of their lives and destinies. They do this by talking to relatives, friends, romantic interests, bosses, and colleagues.
Here is how I filled out my Educating others about your Brain Injury worksheet. You can complete your worksheet anyway you like to meet your brain injury education goals.
Who I want to tell about my brain injury: Old and new friends.
Type of relationship: Friendship with classmates, teammates, Veterans, co-workers, neighbors, Brain Injury Survivors.
Why I want to have this conversation: I miss and value our friendship.
Timing: Spontaneous and plan ahead.
How I’ll introduce the topic: Via conversations and articles I’ve written about my Traumatic Brain Injuries.
Points I want to cover:
1. How was I injured?
From ages 5 through 17, I had many concussions, knockouts, and countless repetitive sub-concussive hits from playing sports.
In 2001, I survived an accident that happened in the blink of an eye which could’ve killed me. Instead, it left me severely disabled.
2. Initial Diagnosis
A Traumatic Brain Injury (TBI) is a disruption in the normal function of the brain that can be caused by a bump, blow, or jolt to the head, or penetrating head injury.
I was initially told by an Emergency Department doctor that I had a concussion and that I would be clear to go back to work in three days instead of being sent to a rehabilitation hospital. With no rehabilitation, education or support my world fell apart quickly.
Even though I look normal, I was badly injured. What looked abnormal at the time of my injury was immediately removed from my forehead or corrected with cosmetic surgery.
3. Bad Advice, Stigma, Denial and No Rehabilitation
While going through the motions of trying to live my life post-injury as I did pre-injury, I used bad and false information I had received from coaches, trainers and doctors about concussions and TBI as part of my recovery strategy. That horrible strategy was to suck it up and move on because I just got my bell rung.
You may or may not know that I played in a high school football game with a concussion and got a second concussion which resulted in me dropping out of high school and almost taking my life.
I think we all know how much that misinformation has hurt so many athletes and Veterans and enabled them to reenter games and battles while still suffering from a brain injury without ever getting the proper medical attention or given enough time for their brains to heal.
I let stigma prevent me from asking for help when I needed it (Men don’t ask for help! It’s a sign of weakness!) Instead of reaching out for help, I persevered to keep my jobs and hobbies.
4. Employment and Hobbies
I lost 13 jobs in four years in complete fight or flight mode and had to stop all of my hobbies. I burned a lot of bridges and lost a lot of good friends trying anything I could to be the OLD ME.
5. Isolation and The Old Me
For several years I was bailing nonstop and as quickly as I could to keep the OLD ME afloat. Sensing I was losing the battle, I moved far away from my immediate family, friends and former co-workers to live in isolation because I didn’t want anyone to see what was happening to me.
6. My Breaking Point and Diagnosis
In 2005, I went to the White River Junction VA Medical Center because I couldn’t keep living in denial as my whole world fell apart.
I was diagnosed with and suffer from Traumatic Brain Injury, Severe Post-Concussion Syndrome, and Post-Trauma Vision Syndrome. This means I have problems with attention, emotion, fatigue, processing delays, memory, vision, etc.
I might also have Chronic Traumatic Encephalopathy (CTE) which is a neurodegenerative disease caused by a buildup of tau protein in the brain from all of those concussions, knockouts and sub-concussive hits you or others might have observed me get from ages 5 through 17. I don’t let it bother me and will donate my brain to research when I’m done using it.
7. Uneasy Acceptance
It took a long time for me to accept the OLD ME is not who I am today. My tipping point came after a Speech Therapist working for the Dept. of Veterans Affairs (who saw me struggle, break down and cry after trying to multitask) asked me, “What VALUE do you get out of doing this to yourself?”
8. Quality of Life
I’ve worked really hard to live the best quality of life I can and that’s more important to me now than ever winning a championship in sports or getting a meritorious promotion in the Marine Corps. We owe it to our children and grandchildren to protect their brains and educate them about brain injury so they too can have a good Quality of Life.
9. Early Retirement
I’ve learned that even though I’m early retired, over the past 13 years I’ve worked hard to improve the quality of life for Athletes and Veterans with TBI and their family members. Instead of throwing blocks and making tackles in football, I break down barriers put up to prevent people with disabilities from getting the care they earned or paid for.
10. The Krempels Center
The Krempels Center helps me live a better life with brain injury. When I first became a member, I was very angry and tired of beating myself up everyday with guilt and shame. Other members taught me there is no shame in something I had no control over. I didn’t know all of those concussions, knockouts and sub-concussive hits would almost take my life as a teenager and then haunt me for the rest of my life. I didn’t know I was going to be hit in the head by an 80-pound piece of steel in 2001.
Three years later I’m not only surviving but thriving as a member of the Krempels Community, the brain injury community and in my local community. My articles give a voice to Brain Injury Survivors who can’t advocate for themselves and educate those who want to know more about brain injury.
There needs to be MORE of these facilities across the United States and abroad to help improve the quality of life for Acquired Brain Injury Survivors and their family members as well as train future Occupational Therapy, Speech-Language Therapy, Recreational Therapy, Social Work and Psychology Interns.
A day hasn’t gone by where I haven’t thought about friendships I had before and after my accident. The good times and the bad times, failures and triumphs and the memories we made and share in our hearts and minds. I’m not the same person you might have known in the past and I hope you have an easier time accepting it than I did.
I MISS AND VALUE OUR FRIENDSHIP!
Photo: Getty Images