National Brain Injury Awareness Day Interview with Janna Leyde
What were the physical and mental effects of your father’s Traumatic Brain Injury?
Wow. This is actually quite a hefty question to tackle. Let’s start from the beginning.
My father was in a car accident in 1996. He has a severe frontal lobe TBI caused by a subarachnoid hemorrhage with multiple punctuate left frontal and occipital region diffuse bleeding. He scored a 5 on the Glasgow Coma scale. Layman’s terms? These were not favorable conditions to survive.
Now, the real question to answer here is: What are the psychical and mental effects of his TBI? I am obnoxiously pointing this out because it’s crucial to note that TBI is a permanent condition. The changes stick around forever.
Most everything he does is labored and lacks the agility he once had; however, my father’s deficits are mostly mental. His personality is unrecognizable to the man he once was. He is compulsive, demanding, lazy, and generally lacks the understanding that he has a TBI. He is incapable of holding a job. His Executive Functioning is severely impaired. Think of Executive Functioning as the cognitive conductor. It is the set of mental processes that connects past experience with present action, which is vital for the brain to handle life tasks (planning organizing, problem solving, paying attention and remembering details).
Unfortunately, this is just the tip the iceberg.
What was it like for you and your family dealing with the sudden TBI of your father?
Unreal. Very foreign things were happening very fast. After the accident our lives as they were just stopped. Initially there was a very real chance he could die. For days I was surrounded by our family and friends, adults I’d only known as happy, who were crying and frightened. Frankly I could not picture a life without my dad so I refused to accept. I wouldn’t cry. Once he woke up, everyone was driven by this one-pointed focus that he would get better each day. Lots of waiting and hoping and monitoring his progress. And lots of change.
What was the most difficult part of the coping process?
There is no closure in our situation. Missing him is hard, and a little guilt inducing. You’re missing someone like they’re dead when they are sitting right across from you at the dinner table. It’s emotionally taxing. He was an amazing father. He loved being a dad and a husband, but since the accident I have been charged with keeping the father-daughter relationship alive. He simply is not capable.
Living with TBI means you are constantly prompting someone. There is so much of my life that he cannot remember, let alone the gap that is four months before and after his accident. My father has little to no idea of the loss we feel and cannot understand that he has a TBI and how it has changed him. If you ask him, his brain is fine.
What have you learned throughout the years?
A lot about the cognitive sequelae of TBI, resilience and unconditional love.
What do you know now that you wish you would’ve known when you were 14?
Nothing. There is no knowledge on earth than can prepare you for that kind of a change.
I know I am strong now, and somehow I knew I was strong then. My grandmother just kept saying “what doesn’t kill us only makes us stronger,” so I kept thinking, “alright, I’m not dead yet…here we go.”
How does your book deal with all these issues?
The book is the raw truth. It’s ugly and unsettling at times, because that is what a brain injury is. I don’t tie things up in neat little bows because that is not how they are. The book is about my father and how he has shaped my journey—from loss to love, from adolescence to adulthood.
The story starts when I was 14. I was confident and happy with problems that were relative and regular. Then something cataclysmic happened. It shattered any idea, any plan, I had for the future. It shattered the identity I was ready to grow into. Watching a parent change to this degree under these circumstances is mind-blowing. Watching my mother face her variation of this loss is heartbreaking. Thinking I am supposed to fix it is unhealthy.
I am very much father’s daughter, so I’d be lying if I didn’t say my life was fun. I have had boatloads of fun, have done interesting things, and I love my life, but for a long time I ignored dealing with the part that is broken. Now that I’ve allowed myself to process what happened, I have found an identity and a happiness that is no longer moment to moment. I’ve come full circle. I’m again that confident girl that I was before the accident, and I’ve learned to love and accept the less authentic version of myself and the brain injured father that had come between us.
How has the recover process been?
Recovery. Boy is that a relative term. Recovery is not healing, but rather understanding the particular injury, providing a consistent treatment options, and working to find long-term support.
Health insurance companies must come to understand that TBI is permanent. A very large part of the struggle of having a TBI in the family is financial. That burden can be lifted. Today there are effective treatments, medications and programs, but figuring out options can be daunting and the medical costs are exorbitant. Insurance will dictate the care the TBI survivor receives and you have to become an advocate to get the right treatment. During such an emotional time, this asks for a lot of practicality. Families would greatly benefit by having mentors to help them find proper coverage and make wise treatment decisions.
Lastly. And, I can’t stress this enough. You cannot see TBI. No one looks like they have a TBI. And TBI survivors oftentimes do not think they have a TBI. We have the means to diagnose a TBI, so there is no reason that soldiers should not be effectively evaluated.
Oh, and pre-order He Never Liked Cake. It’s a good story.