01 Feb Dealing with a traumatic brain injury is difficult no matter your age
Recently, I reconnected with Steve, a work colleague from a few years back. It was a fascinating conversation, with heart wrenching moments, yet warm and inspiring. His story so much reminded me of what transpired with my family back in 2001, when our son Kevin suffered a traumatic brain injury (TBI) at the age of 15.
Steve apparently saw a recent podcast we posted at KEVADVOTECH. He had not realized until then that I have a son (Kevin) who suffered a TBI over 21 years ago. In response to my post, he shared that he too has been dealing with a traumatic brain injury. I immediately responded and suggested we talk. And I’m so glad we did.
After exchanging warm greetings and briefly reminiscing over some projects we worked on together a few years back, we quickly jumped into the stories that have shaped and impacted our current lives. And the irony of our new and forever common bond of dealing with traumatic brain injuries, both from the perspective of victim and caregiver.
Steve began to share how his world changed instantly in 2018 after suffering a TBI. I was shocked, as I had no idea he was dealing with this horrible injury.
Steve still works for the technology company I left in 2021. I had the opportunity to work with him a few times over the course of my 7 years there. I had always enjoyed his style and personality, and I deeply admired and respected his work. Steve’s role as a software licensing specialist and subject matter expert in the ‘tool’ this company developed means that he is expected to step in (often in tense customer situations) and provide expert guidance on how to install, configure and maintain this solution, so it can deliver on the business value as advertised.
In our business, it means he is one smart dude. Highly skilled, and someone in high demand and short supply. I can attest to it. My role was more on the sales side and managing partner and customer relationships. Steve, and people like him on our technical team were our ‘saviors’, there to put the ‘shine’ back on our product when something goes awry.
To think he was somehow able to continue in that work capacity at some point after his accident is beyond amazing and impressive. But it has been incredibly difficult for him, and this is not a story with an ending. It has been a long struggle and will continue to be.
What Steve deals with day to day, sometimes hour to hour or minute to minute is a continual battle to overcome neurological, physical and emotional obstacles, some of which might subside temporarily but pop up again suddenly and without warning. For many that suffer a traumatic brain injury, you enter a dark hole and never completely emerge from it.
Through devastation comes hope and inspiration
What immediately inspired me was hearing how Steve has battled on despite being pulled into that ‘dark hole’. He’s found determination to learn as much as he can regarding coping methods, therapies, technology devices, and anything possible that might be available to help him navigate through this difficult journey.
Steve is quick to credit his loving wife, who suddenly became caregiver extraordinaire overnight. My wife, Ruth and I know firsthand how traumatic it is to watch your loved one experience a severe, life altering injury and to immediately jump into a role as their lifelong caregiver.
His story brought back haunting memories of Kevin’s accident in 2001, at the age of 15. But in some ways, our conversation was a much-needed reminder that traumatic brain injury survivors have a unique set of challenges and circumstances than perhaps those with other types of special needs and disabilities.
Kevin’s personal struggle with his traumatic brain injury
For the past 21+ years, Kevin has gone through periods of high anxiety; sometimes in short intervals and sometimes longer. What compounds Kevin’s challenges is his speech difficulties. It is often difficult for him to clearly communicate what he is experiencing. That’s an understatement. It’s often impossible to get a good read on whether he is in some sort of pain or simply having a high anxiety moment. We can only guess gauged on his behavior at that very moment.
We published an article here back in April 2022 that describes some of Kevin’s challenges due to resulting aphasia from his brain injury.
But here is something I often lose sight of, and I need to remind myself of more often. Despite Kevin’s inability to clearly and properly communicate, we are 100% certain he sometimes thinks about how his life was before his injury. We know this because he will sometimes make comments about the past that we can discern from piecing a few of his words together. Ruth and I are amazed when Kevin gives us a rare glimpse into his brain and how his long-term memory is still there, deep within; occasionally displaying evidence of things that happened before his accident.
Getting to the source of ongoing anxiety and frustration
For the first 15 ½ years of his life, Kevin enjoyed all the things in life that many young kids are fortunate to experience. Friends, enjoyment of school life, being around family, participating in team sports, and so many other things he loved. He had his whole life ahead of him and it all changed in an instant.
In short, Kevin wasn’t born with his disability, and he knows it. And it sometimes frustrates him and causes him to lash out, even with the people closest to him. In fact, it is not uncommon for someone with a TBI to become suddenly angry, often with people you most love. To someone that might witness a sudden meltdown and see it as an anger management issue or disrespect, it’s more like a post traumatic stress disorder (PTSD) moment. It’s like a sudden flashback that sparks anxiety, deep sadness or anger. Sometimes we can see it coming; sometimes we can’t.
And when something like this happens, it can sometimes be a bit of a challenge to diffuse. I’ve learned to try and take it in stride, as calmly as possible. Overreacting to an outburst only fuels it. For Kevin, it is often completely forgotten by him a short while later. Out will come an innocent smile and a ‘high five’ or a hug, as if nothing happened. It’s those moments that define the true meaning of unconditional love.
With a TBI, it is difficult to define your peer group
Being around others with various special needs is often uncomfortable for Kevin. Despite how others with special needs might see him, we think Kevin sees himself differently. Sometimes in his mind, he’s still that ‘normal’ kid and wonders why he’s part of the group. Given his speech difficulties, he often stands back from the crowd as they are engaged in social interaction. Many that have come to know Kevin over the years have learned that it is sometimes helpful to reach over to him with a ‘high five’ or a ‘fist bump’ every so often to let him know he’s part of the conversation. He usually responds favorably.
The good news is that everyone treats Kevin so kindly in these special needs groups he participates in. And it is a beautiful thing to watch. I think some of his peers are a bit curious and wonder why he’s not jumping into their group activities. But in turn, Kevin is respectful to them and on occasion shares a glimpse of his fun personality and old sense of humor.
Although it doesn’t always show, there is an amazing side of Kevin that we wish everyone could witness.
Looking forward to learning more from Steve’s story
I’m still processing everything Steve and I discussed last week. He shared some great information that I hope to share with our audience, and he has agreed to do an interview with me via a video podcast. I am very much looking forward to it, as I know his story will inspire others.
Steve shared a brief video that included three short, animated stories about others dealing with traumatic brain injuries. I found that some of the moments in the videos hit very close to home and wanted to share with you here.
As always, we appreciate your ongoing support. And I want to thank everyone for once again for allowing me to share stories of our very personal journey.