My first “real” symptom of multiple sclerosis (MS) involved my speech center, in my cerebellum. My symptoms were enough to scare the now famous MS specialist Stephen Hauser, MD. He gave me a very heavy dose of steroids.
At that time around 1986, there were no real treatments for MS. I was only 17 at the time.
For Several Seconds at a Time, I Could Not Speak
As a college student, I tried to make fun of a serious situation, and the other students followed my lead. This is what we’d do: It was Biology 101, I think, and I sat next to my friend Mary in class. I started to notice “waves” that came across my mind, eliminating my ability to talk.
It was like I had a big blank spot in my mind. If the professor called on me, which seemed to happen frequently, I couldn’t answer, because I could not speak.
Mary and I both knew that the whole episode usually lasted a few seconds, so it was up to us to distract the professor and the class until I could speak again. We would do things like knock my books to the floor to distract everyone until I regained my ability to speak.
Even though something very scary was happening, as students, we were happy to shove it all under the rug.
Nonetheless, this neurological symptom got scary enough that I consulted a neurologist in Ithaca, New York, near my school.
Years later he told me that he had suspected MS, but he had given me the diagnosis of a brain tumor. Well this had me and my parents flummoxed. What was I to do? I was young, and this was not something I wanted mucking up my life.
To this day, I remember how scary that time was. But a couple of weeks after the “waves” and the episodes of not being able to speak started, the issue just disappeared. Until now.
Dysarthria Returns, and Not Just for Seconds, This Time
A few decades later, I am once again plagued with speech issues, although now it is dysarthria, sometimes known as “drunk speech.”
The feeling of “waves” that used to alert me to the beginning of speech issues has disappeared. Instead, my tongue has slowly seemed harder to move. This sounds preposterous, but it is exactly what has happened.
The brain controls the tongue, and while I don’t know all the inner workings involved, I know when something is wrong. And something is definitely wrong. Whenever I get tired, I slur my words and sound like I’m drunk.
In all my years of life, I have never felt so alone. I cannot effectively communicate. Imagine what that feels like!
The Personal and Social Fallout of Speech Problems
Here are some of the ways my speech difficulties have affected my personal life:
Interpersonal Relations Somehow, I have to convince others that there is a communication issue, not an issue of understanding. Interpersonal relations can be something as simple as making a doctor’s appointment. How you exist in the world changes when you can’t speak.
Personal Feelings I am in a wheelchair, immobile, but that does not mean that I don’t understand you. Many people love to raise their voices as if you can’t hear them. So now you are being yelled at for no reason.
Thwarted Ambitions Over the years, I have done several presentations to different groups about MS and cognition, self-management strategies, and more. How do I do that now that my speech is compromised?
The word “unfair” comes to mind. I have not lost my ability to think and reason. But I feel as though my brain has put me in “slow mode,” and I come across looking inept.
I have never felt lonelier.
But there is a bright spot in all this: Candice, my speech therapist, who always validates that none of what I am going through is of my own making. I will take that as a consolation prize for all my efforts.
