As told to me by Bill Gunnin
Impaired Decision Making- the inability to regard the cognitive processes which result in the selection of a belief or a course of action among several alternative possibilities; the inability to take into account all possible choices and come to a conclusion on a course of action.
The slowing of my processing speed the doctor says is happening, makes so much sense to me now that I know what it is. Processing information takes multiple parts of the brain working in cooperation with one another. For me, all thoughts are coming into my brain with equal importance and intensity. My ability to filter importance and prioritize tasks is greatly reduced, so everything has equal power as it comes in. I have trouble sometimes focusing my attention on what I think is most important. I cannot process/filter other things vying for my attention in order to determine the best course of action. Therefore, I have trouble making decisions of even basic things, for example, picking out what to wear. I think about all the possibilities of the clothes, the work I will be doing, the weather, what I might need, which shirt works for whatever event I am going to, which one fits better, what color looks better on me. It seems impossible to sort through all that, plus my worry that I might not be ready for the unexpected. It is hard to just pick one. It is easier for me if you pick it. Same with a big menu at a restaurant. I drive the servers crazy with my questions because I just cannot decide. It is embarassing.
There are some things which help me to cope with this processing issue. Driving helps me to think through things, as long as it is a relaxing drive and there is no traffic. Like today, we are driving and I am able to talk through this. Listening to jazz helps me too. Sometimes instrumental jazz music can help calm stuff down mentally. I say sometimes, because my reactions to these events on one day are different than the exact same stimuli on another day. If I am fresh it is easier to decide things; when I am tired and out of sorts, mental fatigue sets in more quickly. It is hard to be aware, and to predict when I will have trouble with a choice. It is like all of a sudden my brain cannot process. Flash anger pops up when I cannot figure out what to pick. I can tell I give out so much faster now. My brain is the same way, all of the sudden it just gives out. No one can see when it happens or be aware of it since it is internal. This internal torture of making decisions is part of me I can’t share with anyone even if I wanted to because it is a hidden disability. Hidden even from myself. It is not objectively measured by factors or tools.
I have been thinking about the piggy bank analogy you gave me last week. It has helped me so much in figuring out my decision making and why it is so hard. You said I have a piggy bank with only so many coins. I don’t know how to spend my coins, because I don’t know how much things cost me. I need to learn to budget my coins. I have felt bad about not being able to do things. I would feel guilty when I didn’t want to go somewhere we had planned to go, and I couldn’t see it was because I was out of coins. That comparison to a bank helps me emotionally. I struggle with self judgement. Self-awareness. Self-observation. It’s not because my character is flawed, it’s just that I have a limited resource. I don’t like being different than everyone else. My pride, my self-talk, my trying to judge myself…this new idea about limited resources helps me to understand the troubles are not because there is something wrong with me. It’s my brain. I want to be able to afford the expenses I have, and control my outgo. I am having a light bulb moment because of this analogy, only I don’t see it exactly as a piggy bank and coins.
My mental energy is currency. A pile of available energy. But it may not be enough resource for what may be demanded of me, so, I have to work under a budget. I have to learn to be aware of the cost of goods and conserve energy for more taxing activities. Many goods don’t have a price tag. The challenge is I don’t know the cost of so many of my expenses…until I am paying it or it is already spent. Preparing is hard to do because I cannot always predict how much I am using or how much I have left. Sometimes I have frustration, like suddenly in a restaurant and everything is too expensive mentally with background noise and decisions that have to be made. I have no money left and I run out of mental energy. In that moment it is less energy if you just order for me.
This is a practical and measurable way to talk about my life and what I have to deal with daily. It is hard to manage my life. At times, this is true for anybody. It helps me to think about it this way…in assets and liabilities. This separates the injury from my identity. Separates my struggles, from who I am. I don’t want TBI to be who I am, this new thought makes it apart from me, yet something I have to deal with and manage. Just like someone who lost a leg, it doesn’t change who they are, but they have to adjust. The problem for me is no one can see if I need an accommodation and it isn’t clear even to me. This view of limited resources gives me a more objective view of the circumstances. The tipping point is when I use up cash. Then shut down occurs. I may need a quiet room for days, if my assets are spent. If I had them, I could still spend.
An element I am not sure about is the on/off, black/white. Is it gradual? Does it build up? When I run out of energy it is not like I am walking into a dark room, there may be light in the hallway, light in the door, the light dims until eventually it goes totally black. It is dark room at times. (I am thinking in analogies now because it helps to compare things.) I see things but not in specifics. Details are missing. It’s like when you are in the moonlight, your eyes see black and white not color. The light shifts and you stop seeing the details and colors. You stop being able to recognize what things are. In my brain, I don’t connect to an idea, and suddenly am done. It is more like gradually the light is fading. It gets dim. It appears to you they suddenly go out, but to me it seems like it is more gradual. As a victim, I don’t always know the light is fading. I think it is related to my awareness of it. Self-awareness is a hard thing for most people, but for brain injuries it almost impossible. Now that I think about it, my shut downs have caught me unaware. Slowly getting darker. Sometimes my mind has a sense of peace. Relaxed, like I am not stressed. Part of what I am wondering about is if everything I do, spends currency. I would like to think there are some times maybe it’s not diminishing. Maybe I am helping my currency increase. Sometimes things feel effortless, other times I am conscious of effort taken which drains me. The weird thing is that sometimes they are the same things, and they have the opposite effect. Hard to predict.
Playing the piano is an example of this. Sometimes I sit down at the piano and I am doing it for a purpose. I sit down and play and it flows. Then when someone says, ‘sit down and play,’ my mind goes blank. I cannot think of what to play, and suddenly I am stressed. I cannot make a decision of what song to play. A lot of times I think what I am playing sounds stupid. Other times it is good. Sometimes it is interesting. I want it to be interesting. I feel like anybody who plays the piano can play what I can play…and that what I have is not all that special. It feels so simple…no big deal.
However, I know I carry some element of worship to the Lord that is unique to me. There is a certain kind of ministry of peace and an ability to help people tap into it and feel it. I do admit it. It is a gift I have. I don’t know how special it is, not to diminish it, but how unique is it for a broad audience? I don’t degrade it, I just don’t know if everyone will view it as something of value. Just an honest thought, not to take away from what I have. I know what I have musically is different, but I don’t know how many people it touches. I have no doubt part of me is ministering to people…to minister the Father’s heart to his people. I have other things too I think, but that is one thing I know I carry. It has a place. I am not always sure if when people ask me to play if it is the place for me to pour that out or not.
Because of this new perspective…assets and liabilities… I am beginning to understand how to regulate the importance of the thoughts that bombard my mind. Now that I understand I have limited resources. It saves me energy when I let you pick clothes without second guessing it, or using the GPS instead of trying to guess about how traffic will be on every possible route. I am learning to take one thing at a time and to learn to budget my resources and to pay attention to the timing of things. I have a new appreciation and understanding of the verse “Taking every thought captive…” 2 Cor.10:5
If you are a TBI survivor or a Caregiver of a TBI survivor please share your thoughts with us in the comments. We’d really like to know if what Bill shares here is helping others to see themselves/loved ones differently. Is it beneficial to you?