progress vs memory
The battle – progress vs memory
Understanding the effects of TBI in your life requires that you make honest appraisals of who you are and what you hope to achieve within the context of your situation. Extremely difficult when the injury itself has affected self awareness, short term memory loss, problem solving and decision making. It means that doing things and understanding things takes more time and effort than before TBI. It means that your reaction time will be slower, you will become more excitable, and your sense of knowing will be different. It means that organizing and expressing your thoughts will be more difficult so measuring your own success seems an almost impossible feat. It means that self regulation and self appreciation will be diminished.
progress vs memory
Swimming in a streaming exercise pool…you swim for an hour and you’re still in the same place. In the moment, there’s no visual measure of progress. BUT – if you could remember how long you were able to swim when you began the exercise; if you could visually see where you started and could compare then and now, maybe it would help. For Michael, although it feels to you like you are swimming upstream without progress, you are achieving nothing less than miraculous measurable improvement.
Mike says to me “I think I’m done. I feel like I have plateaued”, rebuking the notion I give him examples of the progress I continue to see on a regular basis. Improvements in initiation – noticing that meds need to be refilled and gathering every prescription and vitamin from the cabinet and refrigerator. Sorting, filling, and then letting me know that a ‘script needs to be called into Costco for a refill. Improvements in planning – without assistance, remembering to check the monthly view on his planner to see when he would have time to schedule a massage. Improvements in processing speed – M-F watching Wheel of Fortune and then Jeopardy, Mike is attentive and spitting out answers with the best of contestants. Last weekend I think he impressed quite a few of us. Spending a couple of hours on a Fantasy Football Draft conference call with Matt and Karl, which at any other time during this recovery phase just maintaining the stamina and focus would have been a huge accomplishment in it’s own right, but he also kept up with who’s turn it was, which players he needed for his team AND through all of that kept up and initiated some ”smack” talk which could have been a huge distraction . Accomplishments are notable and measurable, but my references to those improvements were not what the doctor ordered. I’m his mom – he thinks I might be a little biased and perhaps the same little cheerleader I’ve always been. He isn’t affected.
That Friday’s visit with the neuropsychologist – he doesn’t waiver. He says to her ” I think I have plateaued.” she looks at him with almost disbelief, looks at me then back to him and says ” not only would our visits be fewer or further between, but if I didn’t think you were continuing to make progress, I would most likely discontinue treatment. Mike, in just the last month, I have seen many cognitive and behavioral improvements…”. She continued giving anticdotal details and examples that confirmed her professional opinion. But that coaching session did not pick away at the concrete where the thought was planted - he knew this “was it” for him. We still hadn’t gotten through.
Already in place was a plan for me to meet with his Cognitive Rehab specialist after their session on Wednesday to discuss a day and time change for the upcoming few months. During the meeting, Anthony took the time to show Michael and I reports that were generated by the cognitive computer programs that Michael uses during their appointments. It was there that Michael was able to see not an opinion but something tangible; something on paper, in black and white (actually it was in color) that he was progressing! Michael could clearly see that from day 1 to present the marker of each exercise went up. Not down, not straight across; UP. In the beginning of one exercise for a particular cognitive area, Mike was at a level 2. At the end of this day’s session the report showed that each and every week from day 1 Mike had increased a level or two and was now scoring above the measurable scale. Not an opinion, measured and marked by this computer program and is just as concrete as that thought planted in Michael’s head making him think that he had plateaued. There are many areas…there is much more ahead… but for this phase, this wall – how do you spell relief? A-N-T-H-O-N-Y.
Progress vs. memory – I read something once that stuck in my head; a little abstract but here goes: our memories are what keep life in color and without them the “now” is in black and white; like Dorothy in The Wizard of Oz. Being able to remember where you were and how far you’ve come = measurable progress = color/the land of oz. Measurable progress without being able to remember = thinking you’ve plateaued = black and white/ Auntie Em…Kansas. …I don’t know. It made sense to me at the time 
Michael – it’s going to be ok. I know we are at a pretty challenging stage right now, you are often frustrated with me because I am the constant reminder that our work is not done. Many thoughts these days get planted in concrete and running into the wall time after time has become routine. BUT we will find a way to work through this. We will because it is the most important journey of your life.
I almost forgot to mention what took my breath away when we were walking the other day – Mike says “mom, I don’t know if it’s a transitive property or an associative property (I’m thinking I don’t know what either of those are but go ahead), I respond “uh, huh”, he continues “but I was thinking about the mathmatical properties of what has happened because everything can be connected mathmatically” Again I’m thinking, “really?” but say ” ok”, he then says ” if (life+drive) =work and work = dreams acheived then (life +drive) = dreams acheived”. We walk a few more yards and I’m still trying to figure out the answer to the whole transitive/associative thing and he says “so I’ve been thinking about that if (alcohol+driving)=life and life = dreams deferred then (alcohol+life)=dreams deferred. I have no idea where any of this came from but can I just tell you that I am absolutely blown away by the way his mind thinks. BLOWN AWAY! OBTW – he looked it up, it’s transitive he thinks.
If I can get the video to link, it is a video of putting potatoes and peppers in the basket that I took with my phone I apologize in advance for the poor video quality. But it might be a good reminder of your progress when memory fails to be the measure.
reference – basket of peppers Blog Post december 4, 2007 titled “Never Ending Faith”
Never Ending Faith? Still have it. Won’t lose it. You with me?
Keep Hope Alive!
LIVESTRONG Michael.
xxoo
sounds more like transitive – If a = b and b = c, then a = c( I had to look that up btw ).
But, Im sure there are plenty of other equations that you can apply to the situation.
Hi Mike, just dropping by, and had a thought. Your progress = brain fitness. In three weeks I will be running a half marathon in London. I ran one at the end of July, so I know I can run a half marathon, because I’ve done it before, right? Trouble is, what with the children’s summer holidays/limited childcare/getting overtaken by life….I haven’t done any training since I ran my last race. I think that much of what you get frustrated by with your mother is stuff you know that you can do – because you’ve done it before. (I remember you telling me when I asked about your empty journal pages – I can fill them in, I just haven’t) But I think you will know as well as I do that if I’m going to put in a half decent performance in October’s race I can’t sit back admiring my last race medal, I need to get out there and put the miles in to build fitness. Even if I know I’ve done it before.
No Alex (lieutenant), of course you’re right again. I don’t think so. I know that the fat unemployed loser who lives at home again, the person I’ve become. Just because I can talk a good game in no way means that I can necessarily walk that same game. I just feel I have to somehow keep my spirits up and sometimes I do so by making myself sound maybe a little better than I actually am currently.
Welcome to the world of it doesn’t have to make sense. Mike, you and I have weekly discussions about perception. Perception isn’t always reality but perception can become your reality if you’re not careful.
Perception – a person’s knowledge creates his reality as much as the truth, because the human mind can only contemplate what it has been exposed to. When you see things without understanding, the mind tries to reach for something that it already recognizes, in order to process what it is viewing. So what most closely relates to the unfamiliar from our past experiences, makes up what we see when we look at things that we don’t comprehend
With that in mind, let’s take the accident out. If this were your life as you described above, of course you would not be happy. No accident, no injury living at home, not working hitting 200 lbs…yeah, you would call/think of yourself a loser. But it was real. As much as we all wish it didn’t happen to you, it did. So….
Do you understand that you live at home because you were in a horrible accident and what you lost on Oct, 21, 2007 on I66 is not an easy recover? Yes. Do you understand that you may not be an employee but the job you have now holds more responsibility and more commitment than any other job you have or will ever hold? Yes. Do you understand that every function, yes, EVERY function is controlled by your brain, including your metabolism and that extreme fatigue comes absolutely free with an injury to your brain? Yes, you know that. Do you understand that a loser would not have the strength, the will, the courage to not be JUST a survivor and would not have the determination to overcome this “f’d” up thing that happened? Yes, you know this. But does the reality of it all become too much to look in the face some days? Yes and because of that, it is totally ok to make yourself sound and feel like a fricking superhero if that’s what it takes to get through the day.
Take Alex’s advise. You know it’s true…you have to put in the miles and you do. But here’s the error…if your perception is that you’re unemployed and live at home again = loser, your perception is wrong. You have not been here before. You haven’t done this before. Yes, you’ve walked, read a book, played games, learned to play a musical instrument before, but you’ve never done it with an injury to your brain so severe, that doctors said you would probably be a vegetable. Sorry Mike. You’re not a loser. You’re a survivor. A survivor of something so devastating that most would not have the inner strength to persevere. You’re a soldier and this is the mother of all marathons.
hey ho…. Mike? do you realise that not one person who follows this blog has ever, EVER, used the word loser in reference to you? no sir. You could go right back and check all of the posts if you like, and I know that you like to deal in what is measurable. Rae’s comments above talk about your self-perception, but if you would like to make a tally chart of all the adjectives people have used to describe you on this site alone, maybe it would help you measure what everyone else sees. Start with: survivor, inspiration, hero, amazing etc… let me know how you get on. And who knows, maybe we are all wrong…..but statistically…..xxx