The difficult time has come when I am having to question my own judgment. It is beyond unfathomable when one’s own character is being questioned, and the worst part is that it’s me doing the questioning.
As I pensively ferret out the circumstances that led to this situation, I constantly have to remind myself that I am the one compromised here. Because I have to admit that my cerebellum has been tattered beyond belief, my emotional makeup is less than perfect, and my brain is atrophying. This hardly makes me feel like a whole person. Honestly, some things I do well, and others I don’t.
The Wheelchair Is More Than I Bargained For
The main focus here is an electric wheelchair that Medicare provided for me through my neurologist. The chair is quite large and very powerful. I call it “the beast.” It is more than I bargained for and sometimes beyond my ability to control.
I’ve asked myself whether I should have immediately refused this machine and figured out how to get something smaller and more manageable, rather than put up with its very-difficult-to-use joystick and large size.
But frankly, this was unthinkable, because I had waited patiently for months to even get this. The thick carpet in our living room was causing me to tire when I used my manual chair. A manual chair is just not the device to use day in, day out when one has limited energy.
I keep the electric wheelchair on a low setting inside the house, because a higher setting has the power to take out an entire wall if I accidentally run into it.
Nonetheless, I have had some accidents, one of which was the destruction of our bathroom sink.
An ‘Incident’ Has My Partner Questioning My Cognitive Abilities
My partner and I have been under a lot of pressure lately with the building of a new handicapped-accessible addition for me on our home, so it is not uncommon for us to lash out at one another.
Lately, though, a series of incidents have led him to believe that my “disease,” in this case almost 40 years of multiple sclerosis, is the culprit in two incidents, both of which were accidents at best and topics of much conversation and analysis.
Very early on a recent morning, I got out of bed cautiously, mindful to not cause any “drama,” and got into the chair and moved ahead as usual. Little did I realize that a corner of the carpet had gotten lodged under one of the wheels of the chair. Being as powerful as this chair is, it managed to drag the entire carpet across the floor, along with a chair and sofa.
Why did I not act sooner to stop it? Did I not feel something dragging behind me? I must have, but my instinct said not to worry, because David would walk in and fix it. He walked in all right, but he was beside himself with rage and confusion.
Did I not realize what was happening, or was I unable to see the ramifications? It would be understandable to think I had just screwed up — but given the amount of brain damage I have, who knows what plane I was operating on?
Another ‘Incident’ Has Me Wondering, Too
Then there was the incident with the sink.
The sink episode scares me because I didn’t know what to do in that horrible moment. On my way into the bathroom, I had managed to avoid the bathroom door to my right, at the end of a narrow passageway, but I did not stop the chair in time. I pushed the pedestal sink all the way into the toilet.
I turned off the machine and reached over to pick up my toothpaste, which was now lodged behind the sink, and inadvertently turned the machine back on, because my arm was resting on the switch. This time, because of the unforgiving wheelchair’s might, I got my upper right arm caught between the wheelchair and the sink. I cried out in agony. I have a series of yellow, black, and blue bruises and a deep cut as a result of this mishap.
Even With Deficits, I Can Learn
The episode with the sink makes me wonder: Was my reaction time off? Was I overwhelmed into blankness? I literally couldn’t think when everything went so wrong. The worse things got, the less I knew how to react.
In fairness to myself, I did notice that my reaction time was slower, which makes total sense given the myelin loss in my corpus callosum, the information highway in the brain.
Still, I’m confident I will get used to the wheelchair in time, because for the most part, it is working well for me. I have not had a debilitating fatigue episode in about a week.
How much of a role cognition is playing here is unclear, because I can use the joystick; although difficult, it’s manageable. Also, I am able to use metacognition as I write this blog post.
Now that I have thought about the brain deficits contributing to these accidents, I will aim to slow down more with the wheelchair, so I have more time to react. I am aware that the brain is not always able to do what is asked, no matter the good intentions. So, somehow, I need to make new learning more “learned” and less thinking on the spot.