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Friday, March 6, 2009

loving a person who has a TBI



Okay so today didn't go so well in the world of love and marriage. Fighting is never fun but it's something that does happen here in the Shaw household on occasion, especially when dealing with Corey's brain injury.

I mentioned before that my husband suffered a TBI Traumatic Brain Injury when he was 18, cracking his skull, leaving him without the ability to remember a lot of things.

So knowing that you must also know the things we deal with as a family on a day to day basis, loving each other the best we do, and yet coping with the reality of this disability.

"The brain is like a command station of a space ship. To understand brain injury, think about what would happen if the command station were hit by a meteorite. If a meteorite hits the command station, the command station may not be able to control the direction the ship travels or what the ship does.

The brain controls how the whole body works like the command station controls the ship. After the brain is hurt, it may send out the wrong signals to the body or send out no signals at all. A person with a brain injury may have trouble walking, talking, hearing, or seeing. They may even need a machine to help them breathe." -How to talk to Children about a Brain Injury article from brainline.org


Corey forgets most of the conversations that happen the day before. He goes to sleep and wakes up and requires reminding the following morning of what was said, where we went or what happened.

He will yell at the kids for something that happened yesterday or a week ago, thinking it just happened because his brain hits a trigger reminding him with an image of the event, despite the fact the event took place in the past.

He has a difficult time relating to kids who are rude or don't listen to him. Sometimes it makes him feel stupid, almost as though he is beneath them and they know more. This happens when they remember things he doesn't and points those things out.

He forgets to say how he feels. With brain injury survivors, connecting to their emotions can become difficult. A lot times we know how we feel because of images, things that have happened. We remember how we felt doing something or how something tasted or smelled.

Strong feelings crop up based on images from the past, reminders of grandma's perfume when she tucked us in as kids, or a look dad gave when he was angry with us. For my husband this is difficult because he has no memories to draw from and due to that finding his feelings and connecting the emotion to the brain (which has no past reminders) can be so challenging he often feels lost.

Talking and explaining things makes him come off sounding like he is making excuses for things when he's not. A lot times when Core is explaining how he feels, because that is difficult to begin with, it sounds a though he is blaming. Many times he speaks the way a ten year old would when trying to describe how he feels.

"Why are you yelling?" I will ask.

He will reply, "because I'm frustrated Jake isn't listening."

He sounds hurt and upset about it, but the focus remains in a tone that sounds like Jake when he deals with his friends. I hit Ariel because he called me stupid. The mature logic of a parent isn't always there to see the situation without seeing it in tunnel vision.

Most parents can rise above their kids rudeness, examine and see their age, recognize their limits and why they are behaving badly and then deal with it accordingly. For parents who suffer from a TBI it's almost like watching siblings rival with one another.

Corey reacts emotionally to what the kids do, rather than stepping back and recognizing the age difference. He reacts as though they did or acted a certain way on purpose to bug him. Understanding his emotions and being able to stop and think isn't always easy for him because of his TBI.

These are just a few of the challenges we face. Living with a person who suffers from a TBI is hard. It's damn hard I'm not going to lie. Jake and Trace become angry when daddy forgets their birthday or that he was going to play hockey and now he's too tired because everything we do all day long requires brain power and his is used up and now he needs to nap. Or how come daddy can remember lyrics to a song but not that Jake has a judo at four o'clock? The brain remembers what it wants to remember, it's a mystery doctors are still trying to figure out.

Sometimes I get lonely. I married my best friend. But if I'm down or low or feeling upset, so is Corey. So much to the point he reacts just as angry or upset as I do and it's as if I'm not allowed to share those feelings with him, hiding them in the way I do the boys so they don't see mommy crying or upset or angry because kids need to be kids and they don't need the worry.

Sometimes with Corey it's the same. And then even when I do share my feelings, which we talk about everything, even though I know it will be forgotten the very next morning what I said. The loneliness becomes a blanket of hollowness inside of me. But because I love him I understand this is part of his TBI, I work through it, talk to friends about it and try to find ways to cope and help him because it's the disease that affects and causes Corey to do some of the things he does, not Corey himself.

Corey is a special person. One of the most special and unique people I've ever known. He's strong and confident (most days) and can handle things better than people realize.

He is loving and compassionate. He has a wonderful sense of humor and plays with the boys in a way most dads don't, becoming a child himself at times. He always hugs and kisses and says I love you when they do. He's open and honest in talking with both myself and the boys about his brain injury, answering any questions they have or tries to ease their fears he won't forget them.

Because Corey forgets each day together is a new day. There are no real grudges in our house. We live, love and forgive and start each day as new because it's new for daddy.

Yesterday is gone and he's taught both the boys and myself to cherish each morning sun as it rises and each moon that glows at night because tomorrow is another day and today is all we have. Here and now... that is what he says.

The boys understand it and love being able to live each day without carrying their past regrets with them like baggage.

Corey says what he feels without worrying about what others think. Many of us pause, lie, fudge the truth worried we may hurt someones feelings and we are so worried about tomorrow.

Because Corey forgets today and tomorrow is new; he's very honest with people about his feelings (respectfully) of course, but he doesn't worry how what he says will affect anyone. It sounds selfish I know but it's actually very freeing to live that way. The connection you make to others that way is very rewarding.

Besides, he can't help it. He speaks from his heart with the ability his brain allows. And for that I love him.

He finds humor in everything. Many people with disabilities cannot be made fun of. Corey is the opposite and has often been the butt of many jokes from our family and friends and even me (sorry babe) about his forgetfulness and how he is and the things he's done. He's a good sport about it.

Guess it helps he forgets the jabs the next day LOL.

The hardest part of living with someone who has a TBI is explaining to others. My parents, friends and family don't always understand.

"What do you mean he's sleeping, it's two in the afternoon!"...

"How could he forget to pick up Jake from school?"...

"Why is he so hard on the kids? They are just being kids."...

"Why does he make it sound like he knows stuff?"...

"How come he can't remember what I just asked him do?"...


I'm tired of explaining it. I'm tired of people frowning upon him because he feels too upset if too many kids are in the house and it causes his brain to hurt and he can't cope and they don't understand.

I'm tired of feeling alone and as if there is so much wrong with Corey because of comments people make, instead of what is really wrong, the inability of people to understand what living and loving someone with a TBI is truly like.

Corey I love you baby. I'm sorry we had a fight. I'm sorry I get upset because I think you should be like everyone else and just buck up and face things, deal with the kids like I do, face things like I do and God for being angry because you don't remember things like I do.

You are a good man. You are loving and kind and we will make it through the rough patches, together like we always have, you and me babe.

The boys love you. I love you. Don't blame yourself for what you don't remember or can't handle. It's who you are and we should all just shut up and understand that, especially me.

I love you cowboy. Tomorrow is a new day!
----------------------------------------------------------------------------------------------

Links for my family and friends to help understand a TBI and what you can do to help. And please don't forget to watch the video in loving someone who has a TBI: Part 2 to help you understand Corey and others who suffer from this awful but spiritual disability.

How to talk to kids about a brain injury

What impact with Moderate or Severe TBI have on a person's life?



3 comments:

Corey Shaw said...

Hi this is Corey, manic mom's hubby. If you want to understand what my wife is talking about the best way to do that is to watch the movie 50 first dates. This will help you understand what she goes through and what I go through on a daily basis each and every day.

Anonymous said...

Your honesty should be an inspiration to others. It should make people stop and realize this could be their life tomorrow. If they really take the time to understand TBI they would understand how special each day is. Brain injury is different in every one. The severity, how they have to learn all over again, how it affects not only their lives but also thier loved ones. They look perfectly normal, they dont look like they have a brain injury etc. are all very hurtful reactions from others, almost like they dont believe you and your making excuses for them. Eight years I have had to watch my daughter struggle every day. Some are great and some are not but I thank god every day that she is still with us. Although it can be frustrating and knowing she doesnt remember makes every moment with her something I hope I will never forget. They say the lord will never give you anything you can not handle. I believe that every thing happens for a reason, so athough it is not always easy, I wake up every day trying to accept whatever the days event may be. My organized, perfectly planned days are a thing of the past. My days are certainly more interesting and full of surprises but this is my life now and its not easy but hearing I love you and seeing her smile and hearing her laugh makes all the I forgot and I dont remember less frustrating. I just wanted you to know how much your story and information is going to help me let others try to understand what TBI really means. Thank you

miss you all Love Jennie

Manic Mommy (a.k.a. JP) on March 21, 2009 at 1:39 AM said...

Awww Jennie, thank you so much for your kind words. They made me cry. It helps knowing that others like you understand how I feel and perhaps how others feel in loving a person with a TBI. Corey calls it his curse at times. But I call it a gift because if he hadn't had his brain injury then God wouldn't have led him in my direction and I wouldn't have this wonderful opportunity to know such an amazing and immensly loving person like him. Some days are hard, and it's like a catch 22 there is frustration in coping with the lack of memories, but then the realization that it's not the persons fault. I used to ask Corey "don't you get frustrated not remembering?" He said "No, I don't. I can't help what I don't remember. It's harder on the people I love and that makes me sad, but even then I forget a few moments later to feel sad." I just shake my head. He's taught me how to love, how to forgive and how move forward. Your story is an inspiration. You should write about it. I Miss you too more than you know.

Jodi

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