This blog is a continuation in a series I am writing about my husband’s brain injury.  If you wish to read the story in order, go back in my archives and find Begin at the Beginning…all the ones in the category brain injury tell my story. Some are longer than others…they come in chunks of time…sometimes quickly and others much slower.  Thanks for taking the time to read and being patient as I walk through the one of the toughest parts of my life again with new eyes to see how God used the broken pieces to create something beautiful.

IMG_9672So you ask… 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.

grocery storeIf 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 that he asks you questions to deflect any attention from himself. It is a coping mechanism that serves him well. If you talk for more than a few minutes you may notice that he asks a TON of questions, and that 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 isle is overwhelming, because he might not pick the “right” bread. This issue is repeated on every isle. 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 not secure 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 all the shopping when possible.

resturantBackground 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 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.

happy people in a restaurant!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 that I was “over reacting” by cutting him off. Self-awareness is not a trait of head injury patients. One of the hardest parts 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 truly how we live our lives.

In recent days, he has become more of a home body choosing to be where he is more comfortable, than take the 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…just doesn’t cross his mind. If I talk him into going to a dinner out with friends, he doesn’t think he wants to go, but when we get there he is so glad that 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 half way through he is done. Just runs out of steam, and we cancel whatever was left of our day. Stamina has become a bigger issue in recent days.

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 effect every area of his life and those lives closest to him. And this is only a partial list…I could write pages of others…but I think you get the idea. These are the easiest to explain, and still allow me the ability to be sensitive to what I share with the world. I think you can feel the frustration of never knowing what the day will hold and not knowing if his brain will cooperate or not at any given time.

IMG_0408The 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 that we have come to some sense of peace with it all. 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.

4 thoughts on “Encephalomalacia

  1. Michelle,
    Thanks for this series of posts. It’s helped me to remember, grieve and rejoice. I hope it has been helpful for you too. It has been a long road of healing. Your faithfulness ‘in sickeness and in health’ to my beloved friend is exceptional, rare and beautiful.

    You are most beloved. Not only because of what you have done, but because Christ Jesus loves you most.

    • Thanks my friend, you brought me to tears. This series has indeed been helpful for me…holding it all in for so long probably wasn’t the best for my health…but God knew the timing to release it. Plus Bill loves reading what happened to him since he cannot remember much of it. 🙂

  2. You have described my son to a T. Injury at age of 18 has his stories, reminiscing and interests stuck at that age, although he is now 32. The most compassionate, caring person who would live to have a relationship, family and more enjoying the growth of his peers in personal life. His awareness is much increased now which brings depression as he must walk this path his entire life. Thanks for describing this so well. FYI, my son forwarded this article for us to read.

    • Terri,
      I can tell you that this path is not an easy one, yet it is one that brings with it strength and resilience. Your son is likely going to have moments where the reality is overwhelming, and others where it is not as heavy because of gratefulness to be alive. It is a bit of a roller coaster, which I am sure you have all figured out already. You are survivors…all of you. That in itself is an accomplishment to be celebrated.

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