If you’re like me and living with Multiple Sclerosis, you’ve by now learned to “adapt” in many ways you never thought possible or even wanted to in response to the physical challenges this lively disease provides. Hell, if you’ve been alive and breathing for at least a decade, you’ve had your own experiences of adaptation! That’s just a natural process our little pea brains learn to do during life…or we risk dying. Adaptation and manipulation are two of the greatest skills we CAN learn in a lifetime if we’re lucky. But I was never so shocked to learn adaptation was a “naughty” thing in some circles until I was abruptly told I was cheating on a recent neurological exam!
Currently, I am in a double-blinded study with a local research project in Seattle. The study is measuring the effects of a drug called Rituximab (brand name Rituxan) in the potential use of preventative treatment for MS. The drug was originally created and used with pretty good success in treating a disease called “Non-Hodgkin’s Lymphoma”, which is another lovely disease that creates tumors because of too many B-Cells. The current MS Rituxan Study is measuring the effects the drug may have on B-Cell activity in Multiple Sclerosis and hopeful decrease in exacerbation and lesion load of the MS brain.
Now that’s a lot of technical mumbo jumbo about the study, which really isn’t the point of my blog today. But I thought I should mention it just in case you are interested in researching and learning more of what is out there on the cutting edge of the MS studies. And at some point in the future, I may lapse into personal dissertation about my understanding of the biophysical process of MS, which is really a mixture of scientific knowledge and black magic!
So, back to my original topic: Cheating on my Neurology exam...
If you’ve ever seen a neurologist or even been in a research study, you have no doubt been tested, probed, prodded, invaded, examined, poked, and made to do physical contortions, which would leave the Flying Wallendas looking like amateurs. My favorite test (or at least until the research team ruined it for me!) is placing the little, white pegs in the triangle board as fast as you can with one hand, then removing them. This is done with the pressure of a stopwatch. It is meant to measure your eye hand coordination, dexterity, and see if you sweat under pressure. Unfortunately, I carry some weakness and dexterity deficits in my left hand because of the MS, but I have learned to ADAPT. I tend to utilize my nearly useless right hand for more gross motor movement issues (let’s face it, I was born a lefty and will die one) when I have to. I lack coordination in the hand, but it can “pass” as useful when needed for important things like picking my nose or flipping the finger…and you thought I was using the "technical" term gross motor movement here, didn’t you!?!
Anyway, I was deeply invested in my anal-retentive, OCD ways of “acing” my neuro exam because I am invested in being the best MS patient my research team has, when out of nowhere the researcher shouted, “Hey! You’re cheating!” This startled me from my focused concentration mode and actually caused me alarm.
First of all, I only “cheat” when I know I’m cheating and I felt I was being wrongly accused of a crime by someone with a degree in lab rat analysis! This hardly seemed like a fair and accurate account of my progress and I immediately became indignant.
“Excuse me,” I said in my most condescending tone. “I AM passing this test, aren’t I?” I find it’s always best to take an offensive stance during medical testing, which may eliminate having your butt hanging out of a gown later down the road.
Alison (I’ll call her that to expose her identity) proceeded to calmly explain to me like I was a child that I had been picking up more than one peg at a time to place them and the test was to pick up only one at a time and jam them individually into each speck of a hole. And, if that wasn’t enough, I would not be allowed to remove them and toss the pegs into the bin grabbing more than one at a time. Any straying from this process was “cheating”. I was cheating on a neurology exam. Oh, the logic of the wrongly accused!
Dear Alison did not fully understand my own background in behavioral sciences as I launched into a full-blown dissertation on adaptation, manipulation, and the higher functioning brain processes needed to “cheat”, as she called it. I tried to explain to her in my “cheating”, I was actually demonstrating a much more highly evolved neurological process and one I was certain her double-blinded, control study had not taken into account. I was, in fact, “acing” my neurological exam!
I sat in my smug and intellectual state for what seemed like minutes, basking in my own glory that I had somehow furthered this researcher’s limit knowledge of MS, behavioral adaptation, in some sort of Einsteinian theory that might have wide sweeping affect on her young career. I knew I was right. I felt it. I had mastered a superior state of functioning. I had adapted to the challenges of MS with gusto and glory and was the master of my own ship. There would surely be an annotated note in this study about me.
Young dear, wet behind the ears Alison looked at me calmly with a slight smirk to her left side of the lips and replied simply, “Whatever. Don’t do it that way.”
I can still faintly hear the air wheezing out of my balloon deflating…