What does TBI with encephalomalacia look like? Like a normal person. That is one of the main difficulties of brain injuries and their effects, you can’t see them. Unless there is some kind of facial scar, and many times there is not, you would not know someone’s brain is damaged. Whereas if someone is in a wheelchair, or a cast, or has a prosthetic, people realize there may be some limitations. With the brain, they do not see the restricted thought process, or the emotional variability, or the behavioral differences. Unless you are close to the person with a TBI, you probably wouldn’t notice much that would cause you to make allowances. Once you spend significant time with them you would know something wasn’t exactly right, but you wouldn’t be able to put your finger on it.

If you run into Bill at the store or around town, he will be his usual gregarious, quick-witted, humorous self. He will greet you and smile and carry on a conversation with you. He will be compassionate because he is caring. He will remember you by your face, even before the injury he wasn’t so great with names, he will ask how your family is doing and he will care about your answer. These things about him have never changed. He is a kind, generous man with his time and talents. He will get you talking by asking questions. In fact, this is his strength, drawing people out, making them feel cared about. He will set you at ease right away. 

What you will not realize is he asks you questions to deflect any attention from himself. It is a coping mechanism which serves him well. If you talk for more than a few minutes you may notice he asks a TON of questions, and sometimes he asks one while you are in the middle of answering the previous one. The number of questions he asks has gone up considerably, and he does not always recognize this fact. He still loves to talk to folks and loves hearing stories of their lives, he just may not recognize when you are ready to move on to another topic, or when you want to end the conversation. Usually though, in the store you never get to that point because short conversations are expected.

If you watched him shop, you would see that he has great difficulty making decisions. The bread aisle is overwhelming, because he might not pick the “right” bread. This issue is repeated on every aisle. It is the same in the closet when he is choosing what to wear, or on the way to somewhere when he is choosing what route to take. He is insecure about making the right choice and questions himself on just about everything. It is exhausting for him to consider every option of every choice he makes throughout the day, what to eat, what to say, what to do, yet he cannot stop himself. It is easier for him to ask me or someone else. If I send him shopping I can expect a call at least once, usually multiple times, describing in detail all the possible choices. My list has to be very specific if I want him to find the right item, and even then, he might call to question MY choice. It is simpler for me to do the shopping.

Background noises or busy places can also be problematic. His brain can no longer filter out what is unnecessary like yours does. So, he hears it ALL. Restaurants have always been a problem for him since the accident, but it is becoming even more of an issue. It is like sensory overload for him. It takes a great deal of effort for him to follow a conversation so he may just shut down and say very little, or he may become agitated and restless, ready to flee to a quieter place. However, if the place isn’t super loud he will genuinely converse. He prefers deep to surface level and he is sincere in his care for others. It is just getting harder for him to connect in this way.

His social filter doesn’t always work. He may say something that isn’t appropriate to the situation, i.e. make a joke at a time that it doesn’t really fit, or he might throw in one-liners constantly to the point of annoyance. He is unaware of this, of course, so it makes it difficult when I have to point it out. We have some signals we use but afterwards he can get snippy, thinking I was “overreacting” by cutting him off. Self-awareness is not a trait of head injury patients. 

The hardest part of TBI is the inconsistency. One minute everything can be “normal” and the next something is off. It is a roller coaster ride of subtlety, which sounds impossible but is how we live our lives.

In recent days, he has become more of a homebody choosing to be where he is more comfortable, rather than to take a chance on going out where he doesn’t know the situation. He also lives in the moment, meaning he doesn’t really think about stuff in the future, or focus on the past. If you call him and leave a message–he rarely answers his phone because he has to filter out where he is, in order to have the conversation, and this is hard for him–he hears it, but doesn’t think about returning your call for more than a minute. He means to do it later, but then later he doesn’t think about it. It is not a personal thing, it just doesn’t cross his mind. 

If I talk him into going to dinner with friends, he doesn’t think he wants to go, but when we get there he is so glad he did. He truly engages and enjoys himself, but the mental energy it takes for him to be “on” lasts shorter than it used to, and soon we are saying our goodbyes so he can get home to rest. We are limited by his mental energy level. We can plan a day out together, and halfway through he is done. Just runs out of steam, and we cancel whatever was left of our day. Stamina has become a bigger issue.

These are only a few of the problems he deals with in social type situations, but you can imagine how these simple day to day things affect every area of his life and those who live closest to him. These are the easiest to explain but this is only a partial list. There is great frustration in never knowing what the day will hold and not knowing if his brain will cooperate or not at any given time.

The thing is, you will not see these things. They are as hidden as his injury. You might think he is quirky, or you might think he is funny in an odd way sometimes, but mostly you will think he is a great guy, and you will be right. He is. The fact that he came back to such a high level makes him a walking miracle. Many TBI patients do not recover as well and cannot work or have a normal life. Despite the difficulties he faces, and the unknown of the future, he is functional. 

The hidden stressors he deals with on a daily basis are his burden and mine. I guess you could say we have come to some sense of peace with it all. Acceptance…finally, after all the years of grief. Many friends of his reading this may be having an ah-ha moment right about now: “So THAT’S why.” Yes, that is why he has pulled back, he has made adjustments, he has been distant sometimes and fully engaged at others. We are figuring this thing out as we go, as we have done since Feb. 2, 1988, and will continue to do from now on.