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