Bill Chapter 9

Memory issues- a multitude of obstacles having to do with different types of memory.  Depending on which part of the memory is affected, the difficulties can be wide in range and scope.  The resulting behaviors cause frustration and can affect day to day life in jobs as well as family relationships. 

I spend more time looking for things than doing things.  I think I have everything together, but then I don’t.  Losing things and trying to locate things is one of the more stressful things I deal with. With a piano tuning business there are specialized tools and small things.  I have trouble sometimes finding what I am looking for. My stuff is spread all over the house, which invades Michelle’s space and that won’t work.  I organize and organize and organize, but it always seems I am overloaded. Then I can’t remember my organization or which file I put something into.  There are times I am doing my very best to have everything together, but there is always something that isn’t where I need it to be, like a tool, or a file, or my glasses, or my phone, or some form or paperwork. I have driven to someone’s house to tune their piano, only to realize I don’t have the tool I need with me. I either have to turn around and go home to get it or reschedule for another time. No matter how many times I check before I leave the house, this still happens sometimes. I know it is unprofessional, but I can’t seem to fix it. I have learned to check again and again and again before I leave the house and I think it has helped some.

One of the problems, and I don’t know how to change it, is that I get obsessed with locating things.  Because of that, sometimes I lose perspective on how important the item is.  I get fixated, and I forget what I am working on. It is hard for me to realize the thing I am looking for might not be as important as what I am supposed to be doing. I feel if I have the item then I will be ready and I have a desire to be ready for anything. Maybe that mindset is left over from Boy Scouts. Be prepared.

 When packing for a trip this issue causes me to go slowly.  I have to consider every possibility, and when I can’t remember where something is that I might need, I have to stop and turn the house upside down looking for it.  Then once I find it, whatever it is, I can go back, but then everything is out of place because of my previous looking. My difficulty making decisions jumps into the mix and it just causes stress and frustration, and takes me forever to do things that most people can do in five minutes. We have to start packing many hours before we want to leave for a short trip.  To go on a longer one takes days to prepare for.  My wife has to help me think through my list of things I need.  Sometimes, when she is at work I call her and she goes down the list of everything I should have.  I check each thing off, but there are times even doing that doesn’t work because I check something off, then leave it on the counter.  Yes, I packed up my medicine.  Yes, it’s in my bag.  Then I walk out and leave the bag.  It feels so ridiculous. 

It reminds me of my mom and her brain cancer.  She was always unsettled and wondering in circles like she had to go somewhere. She was looking for something, but she couldn’t name it and she kept walking around and around. I might not be as severe as she was, but I feel like that.  I have to be ready; I cannot be unprepared.  I may not accomplish anything because of getting ready all the time, but I will be prepared.  I am forever, getting ready to get ready.

The crazy thing is I can lose something sitting in one place. Maybe I should consider that a talent! In the car the other day, I lost my sunglasses. They were just gone.  I had not even left my seat and they just disappeared.  I was to the point of insanity in my frustration.  I honestly believed I might be going crazy. I couldn’t stop looking and let it go until I knew what happened to those damn glasses. I have no memory at all of putting them into my wife’s purse. That doesn’t even make sense to me, but at least I found them, even though it took 45 minutes of looking in the car first. I get so frustrated with this constant searching. Usually by the time I find what I am looking for, I have wasted so much time looking I am late to whatever it is I am going to. I get all set to go and then find I have misplaced something else!

As much as I resist order, I know order helps me rest. I can’t rest until I find what I am looking for and put it in order.  I think this may happen because it’s not just one thing; it is memory, indecision, feeling like part of me is missing and I can’t find it.  Just like all the stuff I am always losing, I have lost myself.

It helps the turmoil when Michelle comes to my aid and helps me look. Having someone to share the difficulty with makes me feel less like I am crazy. I know lots of head injured people do not have spouses anymore because divorce is so hight after head injury. I cannot imagine trying to do this on my own. Having her help me makes me not feel so alone in it.  I know it’s frustrating for her to always have to stop and help me.  I know I depend on that a lot and it’s not fair, but I don’t know what else to do when I am in a frenzy.  It is in the moment, and I get stuck there.  Not to mention if we are going somewhere it slows everyone else down.  Plus, she has done this for so many years she is an excellent finder, much better at it than me. You would think it odd that she looks in the refrigerator or pantry for my tools and things. But she knows how my brain works and where to look. It does make me mad though when I have been looking for something for hours, and she can walk right in and find it in a minute.

I have decided the problem is a memory thing rather than an organizational thing. It is because of my need for organizational systems that my memory issues are exposed, which increase my anxiety.  When I can’t remember, my organizational system doesn’t work at all, and this makes me feel crazy and stupid.  Things cannot just disappear! I have to keep looking because if I can’t find it now, the search will get bigger tomorrow. At least I know where I have been today, so it limits where I have to look.  Tomorrow my memory will be even worse.

I get angry when I can’t remember things.  When I can’t remember something, it is discouraging.  It causes me anxiety and fear of what I can’t remember. I write and write and write things down so I won’t forget.  I have notebooks full of stuff, but that doesn’t work because all I do is write. Nothing gets accomplished.  I don’t throw them away because I am afraid I will forget all of it.  Now, there’s an app to help file notes and things in your phone.  But then I can’t remember which file and it turns into another thing to distract me.

My memory gaps cause so much distraction for me.  I am spinning my wheels, because I never feel ready to do it…whatever it is.  Like when you go somewhere and you feel like you are forgetting something, and you are racking your brain to think what it is.  You trace your steps trying to make sure you have everything.  It is common for me to feel that way at some point every single day.  It drains my pool of mental resources. I am spending my brain currency before I even get to where I am going. I might shut down once a I arrive because the getting there took all my energy. Getting ready…trying to remember where I put things. Memory issues prevent me from moving forward.  Shame is involved.  It makes me feel embarrassed.  Angry at myself, and I get tired of it all the time.  I just want to be able to get my stuff together.

I have tried to make some systems to help.  I check when going in and out of buildings to make note of what I have with me when I go in, so I can check to make sure I still have them with me when I leave. I have made it a habit most of the time, except when I forget.  As soon as I realize something is missing, I try to call all the places I have been to find out where I left it.  Michelle says I have angels that protect my stuff. I have lost my wallet on a New York City bus, and my passport in an airplane. All of it got mailed back to me by my angels. Mostly, I go on the hunt to find whatever is missing. The sooner I figure out which places to call the sooner I can go pick it up and get back on track. I am trying to be intentional in what I am taking with me and where.

I feel like I live my life on a roller coaster. I feel very capable and smart sometimes and other times I feel like a total idiot. I mean, who loses things without even moving out of a chair?  That is crazy. It takes a long time to get prepared for things, and I know it used to take less. That scares me.

I have a new thing I have tried to do more recently. I am consciously trying to find a place where things belong.  I am trying to get into the habit of putting things back where they go. I know other people do that, but it has always been hard for me to remember where the place is and to believe it is the right place to keep it.   

My wife asked me if it feels like being a little boy again, since my tears and anger seem like that to her. My first thought is what did it feel like to be a little boy? I have trouble remembering. I’m afraid of not being able to express frustration with words.  Sometimes it is just feelings without names and my inability to figure them out is a problem.  I know the embarrassment feels the same as when I was a kid, only now I am not a little boy. It seems like the shame is bigger because I am bigger. A grown man should be able to remember more than I can.

Sometimes I am certain I have a memory of something, but then I can’t figure out if it is a true memory. Is it from this day or years ago?  If it is vivid and I KNOW it happened, I still might not be able to figure out when it is from. Sometimes the memories are clear, but knowing when I had them is not. I can be certain I put something in a place, but I cannot be certain that it was today when I did it.  No matter if I make notes on paper, or in my head, I still cannot always tell if the memory I have is the most recent one.  For example, I remember putting a tool for my piano in a certain place, but the tool is missing; it is not there.  So, did I not put it there? Or do I remember something I actually did, but I have done many things with the tool since then? Or did I put it there when I first got it and not yesterday like I thought?  These are the questions that go through my mind to torment me while I am looking in every possible place.  And I still haven’t found it, so I cannot finish working on my piano. It is maddening!

Others do not know how this kind of problem can affect daily life.  It seems to me that everything I do takes three times the effort of other people.  It is hard just for me to get through the day intact sometimes.  If it was only the memory issues maybe I could adjust better, but throw in all the other things that are silent parts of my injury and how they affect my thinking, and I feel like I will never get to where I want to be.  I will try, very hard, but I will not succeed.  That is the worst feeling in the world.

One thought on “Bill Chapter 9

  1. Bill, thank you so much for telling your story. I know it will help someone else who needs to hear it. You & Michelle are a special gift to all who know you. Love, Glenda

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