WORK IN PROGRESS
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By Anne Gianni
The Gianni Group, Rutland, Vermont |
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Do you recall when you were attempting to learn to ride a bike for the first time? How many times did you fall and scrape your knees and elbows before you actually perfected it? I compare learning how to ride a bike to what it’s like to live with someone who has sustained a traumatic brain injury. It takes a great deal of practice on the part of the caregiver to truly comprehend the survivor, and then be able to know how to work with the person in a positive way. You may go through a myriad of embarrassing moments, but you have to remember that you are still learning. In no time, you will know how to handle these situations.
There were many times when I truly felt that I was about to lose my sanity. However, now that I look back, I realize that I was still in the beginning chapter of my brain injury education. To this day, I am still learning. Just as a person with a brain injury changes everyday, so does your knowledge as a caregiver. Do we ever become professionals at this challenge? Maybe not according to educational standards, but in our own minds we know how to handle these experiences and we become better at it as time passes.
I have been in many situations where my husband, Paul, has made inappropriate comments or faces when we have been in a public place. Part of me was mortified. Then the other part of me was amazed, because he says all the things that we wish we could say when we are disgusted with something.
Paul looks completely normal so it would be very difficult for me to try to explain to someone that he doesn’t realize what he just said. I guess this is where the term “silent disability” comes into play. Most people would just assume he was a very rude individual. I would never embarrass him by saying, “Cut him some slack, he has a brain injury and doesn’t understand.” Most likely, they would probably never buy it because of his appearance. Furthermore, most people do not understand traumatic brain injury side effects.
The most difficult thing that I have had to deal with is my Paul’s reaction to obese people. In our first few months of dating, we were sitting in a restaurant and I noticed that he looked as if he had just eaten a large piece of lemon or lime. His eyes got very large and his cheeks were sucked in. When I asked him what happened, he made a gesture with his hand for me to look to the right. When I did, I noticed a woman who looked as if she weighed around 350 pounds. (It did not help matters that we were at an all you can eat breakfast buffet and she had about 3 pounds of bacon, 12 pancakes, 15 sausages and 9 eggs on her plate.) I downplayed the situation, as I did not want to draw attention to my husband’s reaction. I simply tried to ignore him. He continued to stare and make his sour citrus expressions and I continued to read the menu.
I can remember my blood pressure rising and embarrassment coming over me like never before. When we left the restaurant, I expressed my frustration with him. However, I did not realize that he was truly unaware of how inappropriate his reactions were. I was angry with him for his reaction and he was even more frustrated with me, because he didn’t think he did anything wrong.
That incident took place about 2 years ago. A lot has happened in his recovery since then, as well as my knowledge of his brain injury. Today I take care of the situation before it happens. I have learned the things that he reacts to, therefore I warn him in advance. For instance, if I see a large individual in a restaurant such as the lady we saw that day, I say to him. “I want you to know that there is a very obese person in the restaurant that is going to walk past us. I am letting you know in advance so that you can avoid a negative response.” This warning gives him the choice in advance to decide how he wants to respond to this situation when it does occur. Being that a person with a brain injury needs more time to process information, he has time to do this. He now thanks me for giving him advanced warning, so that we can avoid any embarrassment.
All head injuries are different, all recoveries proceed at a different pace, and we all have different coping skills. You may find other strategies that work for you but do not work for someone else and vice versa. However, being patient enough to find those strategies will be the key to your success in your role as a caregiver.
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