Your help is not required
…or I’ll do it… meaning take a hike, it is easier to work without you around.
With a brain injury, I require a plan, and an exact set of steps to follow, I am unable to see what the next step is (working at someone else’s pace) and I do not do change. Most people think as they go… I no longer have that luxury. Do I want to help.. YES!!!! Do I want to feel like I am contributing…YES!! Am I able to help…YES but with limitations. Let’s give some examples so you can understand what it is like for someone to have to be around me “working”.
The task is leveling a pile of dirt. I am slow and methodical and do not quit until I an done the job… so I have to listen to.. “you are not done yet?” When I am done the dirt is perfectly level. I am happy with my job. So now depending on the mental health (self esteem) of the person you are working with, you will either get, “about time you got it done, now what is for lunch” or you will get” looks great” or “it is just levelling dirt and it won’t stay perfect, waste of time to put the effort into it” none the less it is all stuff I need to deal with as hanging on to my own self-esteem is tough enough with out letting someone else rip it away.
Another example would be I am holding a piece of wood up and for what ever reason everything falls down.. well unless it was part of the plan made ahead of time and I was told that if it moves you will move to here, I will just stand there and everything will come crashing down on me because I cannot think fast enough to get out of the way. To add to this if I get scared then I might be crying as well… I am sure you can imagine how scary and frustrating this is for others. I become too much work for them to even consider including me.
This one is a killer. I have to ask, “why are you doing it like that”. The words always tumble out… I have had enough “fall outs” from these words but they are like diarrhoea of the mouth, I am unable to stop them. Part of my brain process needs to figure out what and why so I can feel part of so I ask. Every human being I have ever encountered since my brain injury does not like to hear these words, they immediately feel questioned or criticized or WTF… So If you think someone wants to have help from someone that is brain inured think again, because I have met many brain injured people and we seem to have very similar problems.
Or I am on task, and I do not hear ( nothing to do with hearing per say but how hard I am concentrating to do the task.) the person telling me what to do or… What do people do when they ask in a normal tone, then ask louder well… I get yelled at, now I am scared as it came out of nowhere. I am no longer paying attention to what I was doing…so very easy to lose fingers or worse. Now they are mad at themselves and me…So are we having fun yet??? To top this off, now that my concentration has been broken, I cannot resume the task… I am stuck… I need to start again… now I am mad!!!!!
I absolutely cannot talk and do any task!! I cannot talk and wipe off a table, I mean nothing, it is either talk or task nothing in the middle. How many people do you know can be around another person and be silent?
Do not come into the house, I am working.
If there is another person around I am unable to do any tasks which require great focus for me to do because of the interruptions. An interruption, can be walking across the floor, opening the fridge or god knows what… if someone comes while I am on task, then I try hard to be fast to get it done.. and the stress of hurrying does me in ..in as little as 5 minutes.. I cannot hurry.
Big area of concern for everyone involved, I get focused on a task and do not eat, I do not have hunger, as I do not recognize it because my brain is too busy on task. Then if I do get hungry, I do not want to use up energy or brain power making myself something to eat so I skip or have tomato soup… This does not sit well with others around you… now they feel they can’t leave you alone because you will not look after yourself properly.
Where did we park?
I have to go in the same door and come out the same door, no if and or buts. When I drive I park sometimes 4-5 blocks away in a parking lot that is never busy so I can park in the same spot. When I am with others they park all over, consequently for the most part I am unable to know where the car is. It is next to impossible for me to shop with someone. I am too slow and they keep talking, so I cannot think. I must have a plan…I am going here and you are gong there and where do we meet up and at what time and if you do not show up what do I do…. With out this plan I am unable to figure out how to find them. I am the same way in airports, city streets.. so now can you imagine how much people that care about me worry when I go off and do stuff on my own?
Not all negative…
I am very good at some things. I can appear normal when I am able to have the time to plan for all the what ifs, and am able to have control over how things go. I cannot maintain this level of focus but I can pull it off for a few hours here and there. I pay in tiredness but I can appear normal. I am not stupid in any fashion even though sometimes I may do stupid things… some days I have trouble accessing information or finding it in my brain.
I could write a book….and it would take me forever, so my spouse asked me to let you know that he is more than willing to come and speak with you regarding the changes/impact this last accident has had on me, us and our lives. He can much easily explain me and the first accident and me and the 2nd accident. He is willing to talk to you alone or with me present…your choice.
Whew, that ‘s the letter
This brings me to invisible. I know that when I talk about invisible I am talking not only for myself but for everyone else out there with a TBI. We live in bodies that look whole. Sure there may be an odd gait, odd stare, or even halted speech, but we appear whole. There are no bandages to indicate an injury or impairment. I desperately do not want to appear impaired so I will do what ever it take to appear normal at what ever cost and I am sure I am not alone in this regard. Most of us did not lose our intelligence, we lost how we are able to access the information we do have. Most of us have trouble with short term memory, hence the reason I always repeat what ever I am told when given instructions etc.
I want to make it very clear that losing our keys is not at all like what it is like for a normal person. When we lose our keys, the very first thing that happens is panic. They are not where they are supposed to be. Next comes overwhelmed in a huge wave because you have no idea where to look. You have no ability to retrace steps or even remember where you were or what you were doing. The keys could be anywhere, if something disrupted me when I was putting the milk away, I could easily have put the keys in the refrigerator. Next comes obsession of sorts. For someone with TBI now you are unable to focus on any thing else until the keys are found. It doesn’t even matter if someone says here is the spare set. So the next time, you find someone with a TBI who has lost something ask yourself is it appropriate to say…” I forget where I put my keys all the time”….
How about when you go out and participate in an activity, and everyone is telling you, you are fine, we do not see any disability…you are the smartest person we know…. Kind of makes you feel like you are a fake or over emphasising, however I have come to learn that these same people if they had to live a day in my life would crumble to nothing. The amount of work it takes behind the scenes to pull off “normal” is by far too hard for most of them.
Like I said at the beginning I am writing about the unthinkable and invisible. I am actually” glad” in some ways to have to go through this again as all of these thoughts and emotions are brought to the forefront and I realize that it had made me even more of a resource for others. More of a resource because now I recognize the stages from going through it before and utilizing the strategies from before is working great so I know it is tried and true.
I am going to try to write abut specific things and how I handle them or how I manage. I welcome any feedback or questions.