One of the greatest elements of Bike MS is the opportunity to gather every year with the army of Team Amulet riders, acquaintances from the past joined with some new faces.
A few years ago, I met one of our new faces on the first day. If I had to guess, I figured she was one of the riders recruited by Brie. So, being the Mr. Outgoing Personality I am, I hopped over to introduce myself.
“High! Welcome to the team. I’m Kevin, Brie’s husband.”
Mr. Outgoing Personality shrunk to about 2’ 5” with her gentle response.
“Kevin, I’ve ridden on your team for the past three years. If you introduce yourself one more time, I’m going to smack you.” Points noted: we’ve met before; I’ve done this before; never forget your name is (I can’t remember).
Cognitive issues are prevalent in MS patients. I’m fortunate, in a sense, as my memory remains strong in most areas. I’m on the board of directors for three nonprofits, my financial analysis acumen rivals Warren Buffett. In fact, we differ in only two areas: $50 billion and the ability to remember the name of people we met five minutes prior.
Damn, I’m so close…
I am married to an outgoing ‘gotta meet new people’ person. My daughter is a social butterfly, who already has more close friends than I’ve accumulated in my lifetime. Once my dog gets a sniff of you, and she likes it, you are forever in her heart and mind. Then there’s me, the recluse who hates social gatherings. We went to a fundraiser for Eleanor’s school the other week, there were over 100 people at the event; I should have known 30, or more; at least 35 - 40 knew me; I met another 10 - 15; when I got there, I could name maybe 6 or 7; I think I forgot 1 or 2 names during the event, and left slightly more ignorant than when I arrived.
It’s not, “Yeah, I have trouble remembering people’s names.” It’s a therapist level, neurologist level condition. My regular doctors (I kind of remember their names) cannot pinpoint a specific cause/treatment. I have undergone a variety of tests with several Dr. WhatTheHellAreTheirNames; my retention and recall are superb, except for those gaps.
It’s terrifying, to stand in a familiar room and feel so disconnected. When we go out in my social circles (gatherings where innocent folk are damned to be classified in the same circle as I) Brie is never introduced to others by her rude, inconsiderate, jerk of a husband. She’s forced to announce herself and become acquainted with them on her own. I merely agree I’m rude while I scold myself, “Aaaah, that’s their name. Dammit, I should’ve remembered that. I’ll remember now,” which lasts, of course, about five minutes.
There is no pattern. Old friends, new friends, no matter. Coworkers, family members, neighbors, are all fair game. Long-term memory is better than short-term, so if you have known me for 45 years, hopefully, I’ll give you more than a, “Hey, ’Sup!” Unfortunately, that’s not a given. There are pockets in that broken pattern, some good, some bad.
I’m trapped in life on the peripheral, an unwanted man looking into a world only slightly familiar. There are days when it’s scary as hell to run into someone, a person I may know or should know, and have no clue what my relation is to the figure standing before me. Hopefully, I have an idea where we know each other (Eleanor’s school, old work, neighborhood), but just cannot recall your name.
So, the next time we run into each other (social event, the workplace, gathering of close family members), and I give you the, “Hey!!!... How’s it going?” please be kind. I'm not rude (intentionally), I'm not an ass (this time), I don’t think I’m above you (at the least not until I get my $50 billion). There is a good chance I just don’t remember who you are.
Cognitive Changes
Refers to a range of high-level brain functions affected in more than 50% of people with MS, including the ability to process incoming information, learn and remember new information, organize and problem-solve, focus attention and accurately perceive the environment.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!
Never Stop… Never Quit…®
Kevin Byrne
Portland, OR
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