What Was That Word Again?
Last updated: January 2022
Jokes that have to do with linguistics or wordplay or a twist of phrase crack me up the most. At nine years old my favorite joke was from the news of the first McDonald’s to open in Israel. The anchor musing about “Big Menachem’s” rather than Big Macs in honor of then Prime Minister Begin. What can I say, I was an odd little kid.
I am a full-grown, old adult and my love of wordplay still exists. I enjoy one particular evening cable news host because of his aside and penchant for wordplay. Give me a lexicon of words over physical humor and I will take it any day of the week. I love to read. I love words. That is why it is disheartening when I cannot find the right word to say.
Cognitive issues with MS
Cognitive impairment is one of the byproducts of multiple sclerosis. This can come in various forms such as the infamous MS fog which is fairly common. The inability to find a specific word is part of cognitive difficulties. Findings in a recent study covering new MS patients “…suggest that decline in word-finding and language ability is more common and significant in MS than previously thought.”1 The study authors admit that more needs to be done to investigate this area among those who have been living with multiple sclerosis for a longer period of time.
Since we know that cognitive decline happens over a number of years it would not be surprising to learn that word-finding difficulties occur more often with the former population. These findings are in line with my own antidotal experience. Not being able to find the right word happens to me more often than it did five years ago. My instances of loss for a word have grown alongside my physical impairments since my diagnosis.
All I do is talk
I am unashamed to admit that I like to talk. Communicating verbally is oddly pleasurable to me. My mom claims that my constant crying as an infant was really my attempt to speak. Considering the fact that I used to get paid by my parents to be quiet, I do not doubt her assumptions. Rather than discourage me from talking, interested adults turned me towards public speaking.
In high school, I was a part of the forensics team. It was the forensics associated with dramatic arts and oratory, not the CSI let’s-catch-killer kind. After mediocre showings with both poetry and original oratory, I found my place in extemporaneous speaking. Having to think on my feet with little preparation was my sweet spot. So great was my love of the sound of my own voice, I lettered four times and never went home without a trophy or ribbon. So, imagine my distress when I started to occasionally lose words.
At first, it was not a big deal because it happens to everyone at times. As the years have passed I have had more times where I was looking for the right word than I did in the past. For someone who lives and dies by the word, this turn of events has shaken me to the core.
Living by my words
This issue is a significant cause of concern for me. My advocacy for more relevant research on behalf of African-Americans living with multiple sclerosis and for health equity relies on my ability to communicate. Written communication is not a problem because there’s always a dictionary or thesaurus I can use.
When I am speaking my extensive working vocabulary is suddenly skipping a beat. Words seem to be hiding from me. When I cannot find them, I wind up looking up to the sky, or ceiling, for the exact word I need. It is like I am hoping the literary deities will smile down upon me and hand me the word I seek. Sometimes it appears and sometimes I create nonsensical phrases that get close to the word I want.
Making peace with my cognitive issues
Multiple sclerosis is not responsible for all of my cognitive issues. My odd thinking and occasional word loss is a normal glitch that comes with being human. This human part is also the part that forgives me for my mental fog. Losing my words will continue to be a part of my MS journey. My goal is to make peace with it...and to keep a thesaurus handy.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: