“Living with a family member who has suffered a TBI is kinda like living with Doctor Jekyll and Mr. Hide.”
And oh how true that is. In fact, some days Corey is so sweet, charming, fun-loving, caring, attentive, well-balanced, mushy, romantic, and the “funnest” (as Jake puts it) person to ever be around. And that’s true.
I imagined when I married Corey that I would be getting a man who loves to play with his kids all goofy, grabs his wife hand and parades around the living room, while singing (off key) I might add (Broken Road) our wedding song, while holding me in his arms– dancing with me. Each day is an adventure for us.
When Corey wakes up we never know who will meet. We don’t know if that person will stay with us throughout the day, or leave us part way through, forgetting in an instant just how much fun they were having.
Traumatic Brain Injury TBI survivors are complex–and the persons living with them equally complex, and so is understanding how to handle the ups and downs of living with someone who has suffered a TBI.
After four years of marriage, I am still learning when to bite my tongue so hard I taste copper, to keep from saying something I know he will only forget later, which can sometimes turn me into an anger ball. To trusting my instincts, showing patiences and understanding to the man I married in the same way I would my two years old, but without talking down to him.
Bottom line–it ain’t easy. In fact it’s downright hard sometimes. And most of the time I’m left feeling very alone, while living with my best friend, lover and partner–always wondering…
“Is today going to be a good day? Or a bad day in the life of Corky?”
Because whatever type of day he is going to have, affects my day, and the day of our children. That is the hardest part to accept. To expect the unexpected, each and every day.
A good day for Corey means he will remember lots of things. Perhaps most of them not when I want, but he will remember. For instance–I might send him to the store to buy something important, and I can’t go because the baby is napping. A half hour will go by, and he hasn’t returned.
My alarm bells do not go off though. I’ve learned that time has no real limit where Corey is concerned. I don’t start worrying until the two hour mark or so, as forgetting where he was going, what he was getting is a part of the process. He will return and smile, telling me he (of course) forgot what he was to get, but then remembered and had to go back. Or that he ran into a friend and lost track of time.
A good day in the life Corky is filled with tons of laughter, and silliness.
Corey does voice impression, and he often uses them to make us all giggle.
He is light hearted, caring with the kids, attentive towards me, and often remembers to write down what to do, where to go, and thoughts he wishes to share, which can often disappear in the blink of an eye if he doesn’t.
We cherish the good days, the kids and I. We cherish, and enjoy them because we know that tomorrow could be different.
Tomorrow could be a bad day.
What is a bad day?
A bad is entirely something different. To some it could be seen as abusive, mean, stupid, and just plain ridiculous where everyone may question why on earth I’m even married to such a man who at times can be difficult, argumentative, negative and so forth. But they don’t know. They don’t realize. Many of Corey’s characteristics, attitudes, reactions, and lack of emotions, as with many Traumatic Brain Injury survivors aren’t his fault. His brain is damaged.
And no matter how much you wish, beg, plead, and swear to the Holy man upstairs. Unless you have suffered a TBI yourself–you can’t even begin to understand what it is like to live with something you cannot control.
To look normal to the world around you, and suffer the looks and stares, the opinions and reactions of people who don’t see your disabilities because you don’t wear them on the outside.
A bad day with Corky means me sending him to the store for something, and him having to make at least five trips because he gets the wrong thing, forgetting where to go, or when to pick up something, and not having the sense (the ability to remember) to call and ask.
A bad day in the life of Corky is when from the moment he gets up, feeling angry, upset about something, but due to his inability to connect with his feelings at times, and having no idea why.
He gets frustrated with Trace for not listening, or angry with Jake for something Jake did two days ago, but he thinks happened today.
Or telling me something I said nearly a week ago, and then feeling defensive and angry because I correct him, telling him it’s something we already discussed, but he can’t recall the information.
A bad day gets even worse, when all these feelings and frustrations Corey has–the brain doesn’t cooperate with what he wants his mind to remember. And the person hardest on Corey is Corey himself.
“I’m a bad father sometimes. I yell at the kids for things that didn’t happen. I can’t work cause of my disability and I hate it! I can’t provide for my family. I forgot our anniversary. I forgot my kids birthday’s. I forgot my own bloody birthday! Sometimes I feel so lost.” ~ Corky
Anyone who has suffered a TBI Traumatic Brain Injury with severe memory loss understands all that above. And Corey knows he isn’t alone, but that doesn’t make things easier for him.
At least 1.5 million people a year sustain a TBI from some type of physical trauma. The highest percentage being car accidents, as in the case of my husband. 18 years old with his entire life ahead of him, going to school to obtain a Bachelors degree in Physical Education, majoring in sports medicine.
Then one day, a noise on his bike causes him to look down, and BAM! No more Corey. Many families go through the trauma with their loved ones, and the heartache of losing someone who survives a TBI is heartbreaking.
I will never forget what my mother in-law told me when I first considered marrying Corey. She told me how hard things were for Corey, not being able to remember his friends from school, teachers he had, sports he’d played in.
But also that after his accident, when he awoke from his coma, that she had to bury him in her mind. He was no longer the boy she had given birth to, loved and cherished.
Corey was somebody else.
He had to start over. Corey had to relearn the simplest of task that we all take for granted, like eating, reading, writing, walking and speaking. He wasn’t the same person because he didn’t remember anything that happened before the accident. All his friends, family members, memories from his childhood–all wiped out.
Corey has done his rehab over the years. Life skills, anger management, independent living, physio-therapy, cognitive relearning and more. He’s good at conversation, even though he won’t remember a word you say after speaking with him.
But you will remember him. He has this way with people, and cons his way through nearly every situation, which is a coping mechanism learned by TBI survivors when faced with feeling out of the loop from forgetting. He uses humor as a way to be resourceful when he can’t comprehend his own emotions. In many ways I envy him.
Many of us would kill to go to sleep at night and wake up without the memories of the night before. To be able to forget the fight the night before, what was said to you, or by you. To not know you did something bad, and have no guilt for it, because you don’t remember it. To have no baggage to carry with you because with baggage comes the memory of obtaining it. In some ways his disability is actually a gift.
Either way, it doesn’t really matter. Good days or bad days, I don’t really care. Bottom line, I love him. And how could I not?
His calm nature is my strength. He is my best friend. He treats me with respect, and loves his family, working hard to keep things together. And he is strong, even through his weaknesses, because he is humbled by them rather then complaining.
Life with Corky isn’t easy–no. But life without him would be my own disability. Because without him, I’m not a whole person. Loving him makes me happy. He makes me want to be a better woman, teaching me a lot about myself.
Life with Corky makes me feel blessed. And if there’s one thing I’ve learned been given the chance to be married to such a wonderful person. The world should embrace each others disabilities, instead of trying to hide or mask them.
Maybe if we did, more of us would have what my husband does. The ability to love people around you, open and free, without reservations, or anger to remember, and the courage to show others no matter what–life goes on.
It doesn’t depend on what your brain remembers, but more what your heart doesn’t forget. That is what makes my husband so special. And no matter what happens through the years, what his brain does to hinder him in recalling those wonderful memories we build upon as the years pass us by with those we are fortunate enough to love.
One thing is for certain–even if Corey forgets. I will be here to help him remember.
The time it took you to read this article, 3 out of 5 people have just sustained a traumatic brain injury) Take the time to help, recognize the problem and talk about it more.