It is hard for people to understand how planning, or thinking ahead can just be – MISSING. It’s one of the big reasons people with brain injuries are so misunderstood. We seem like ditz-heads when we really can’t help it. We hurt the people we love by simply missing the planning step.
Friends or family will say “Make a list” of what I need to do or bring with me, or who I want to make time to see. They cannot understand that I actually do make lists but I still miss important – very important – things. And I check and recheck the items on a list, crossing them off as I go along, and yet I will still miss steps. It simply doesn’t make sense. Even to me. I find it very frustrating.
The worst one that I did recently was and still is incredibly upsetting. I just spent a week back in Ohio and I pretty much missed seeing my niece. I wanted to spend time with her and in my mind I thought that I was going to spend time with her but I did not truly plan – meaning think it out and place time with her on my schedule. Suddenly it was Sunday evening and she would be in school all day Monday along with a busy evening schedule, then I was leaving early Tuesday morning. How do you explain a brain hole to an almost-fourteen year old? Even though she was dressed in scrubs for her Halloween costume and plans to become a doctor; even though she may have mentally understood my explanation, it still leaves a hole in the heart. If not her heart then at least in mine. I feel very badly about it.
Part of the problem here is the inability to multitask. Both planning and multitasking are part of the collection of brain activities called Executive Functions. Mine are pretty compromised. When I was in Ohio, my main focus was helping my Mom with some financial and contractual stuff as well as spending time with her. (At 85 I consider time with her very precious.) My brain simply was in a one-track mode of getting as much accomplished as I could for my Mom during the time I was there.
One-track is about all my brain can handle at a time. I have to think things out and sort of manually shift back and forth between tracks. Executive functions work like an automatic transmission in the brain facilely shifting from one activity to another and keeping track of it all. With damaged executive functions it is more like operating a manual transmission truck with a clunky clutch.
I just came across a half written post about this same subject from last year when I was taking care of my Mom down in Florida. In fact, what follows was written almost a year to the day. It is so frustrating to still be struggling with the same issues a year later.
The adjustment to living in Florida is starting out far harder than I expected.
Well . . . reality is that I didn’t expect. It’s a sequencing thing yet again. Funny how you don’t realize how much you depend on the ability to sequence – which includes thinking ahead, projecting thoughts out into the future and planning – until that part of your brain has gone missing. I simply did not think about what it would be like to uproot and move.
It never crossed my mind.
It always catches me up because it is not like I do not plan; I do. I just miss steps or forget to plan all the way to the end. I did plan and execute many steps to get here; I packed up my belongings and put them in storage. I packed items I needed in order to live here for 6 months and shipped them. I packed a suitcase to use for the month in Ohio before driving down to Florida. But that is it. My thoughts were focused on getting to Ohio.
Then after I arrived in Ohio I focused on caring for my Mom, which in the latter part of the month included packing up what she needed for the winter in Florida and planning our trip. But again, the planning stopped there. No thought was given to what would happen after I delivered us to her home in Florida.
It is the sudden realization that I haven’t planned that is so hard. The surprise and shock of suddenly finding myself looking at a blank wall.
It is like chugging down a railroad track thinking everything is going just fine and Bam! No more track. You can’t easily change the direction of a locomotive or quickly lay down track in front of yourself.
When the planning function is broken it is simply missing! And I am frustrated by that.
I want to be like the “Little Engine that Could”. “I think I can, I think I can, I think I can . . .” Yeah, that is the problem; “I think I can” and then I get frustrated when I get brought up short and realize “I didn’t think!” I am a positive person by nature and “I think I can’t” is not in my vocabulary. I doubt it ever will be. I don’t want it to ever be. I want to stay positive.
Brain plasticity gives me hope. It is possible that as I develop good compensatory skills I will regrow neurons and connections. But, sadly, it also may not happen. Because the brain damage was caused by multiple concussions the brain tissue responds more slowly. Still – hope springs eternal.
I have to admit that I sometimes feel very self conscious blogging about something like this. I feel exposed. I sometimes wonder why I blog at all, but it often helps me to get clearer on my thoughts and feelings. Also I know I have many TBI survivors reading this blog and I think it helps for us to share and know that we are not alone.
It is also my secret hope that someone will stumble upon this blog, or a friend will read it, or a TBI survivor will show it to a family member . . . and a light bulb will go on. The reader will have an “Aha Moment” where suddenly someones odd behavior makes sense. As I said at the very beginning of this post – It is incredibly difficult for a person whose Executive Functions are intact to understand what it is like to not have those functions functioning. People think, plan, and multitask so automatically that they are unaware that millions of neurons are firing, neurotransmitters are leaping across synapses to make connections and a whole cascade of decisions are made in the subconscious to create a logical action. It is hard for a person to imagine that process simply going missing.
Hmmm . . . I do not want to end this post on a negative note. As I said, I am a positive person. So, here’s to chugging along the best I can. I secretly am still the “Little Engine That Could” even in spite of my frustration. “I think I can, I think I can, I think I can . . . I thought I could, I thought I could, I thought I could. Whoohoo!”