June is National Aphasia Awareness Month, and I wanted to share some of what I have learned on my journey through aphasia after brain injury.
According to Wikipedia, the term aphasia implies that one or more communication modalities in the brain have been damaged—and are therefore functioning incorrectly. The difficulties for people with aphasia can range from occasional trouble finding words to losing the ability to speak, read, or write; their intelligence, however, is unaffected.
Since no two brain injuries are ever the same, the way aphasia affects one person can vary greatly from the next person. In my own experience, I have had trouble finding the word I was expecting to come out of my mouth. I would be saying a sentence, and then all of a sudden, realize I had no idea what the word I was trying to say was supposed to be. It was the strangest feeling because the word simply vanished into thin air.
I also would say the wrong word, and not usually even realize it until the person I was talking to gave me a quizzical look. I would then ask him, “What did I just say?” I had no idea I had said flower instead of coffee pot, etc.
My reading and writing weren’t affected by aphasia, but my cognitive processing of what other people were saying slowed greatly. I would sometimes not understand a word that I knew I should know, and would have to ask them to tell me what it meant (which also would warrant quizzical looks).
It’s such a strange experience because you know you know the word.
The biggest frustration I faced was when others around me would say something like “Oh, I do that all the time, too,” or “That’s just part of getting older.” (I wasn’t even 40 at the time.) What others don’t realize is that this isn’t something they are familiar with. I know what it was like pre-TBI to forget what you were trying to say or not know a word … typically it was an odd word that you don’t use often. But this is totally and completely different. You don’t know it’s not there until you go to say it, and then it doesn’t come out.
I remember the very first time it happened to me. I was trying to tell a friend what I had seen on a billboard sign. I got to the word “billboard” and was so shocked that it didn’t come out. I could describe what it looked it and what it said, but I just couldn’t come up with the word.
Richard Johnson from Minneapolis explains, “In 2003 I had a traumatic brain injury, and one of my main side-effects is, so to speak, aphasia. Because of aphasia, it’s very easy for me to miss words or use the wrong words and perhaps, most importantly, not to understand what other people are saying.”
In a recent podcast, I interviewed speech therapist, Rachel Katz. She talked about Aphasia, which according, to a study by Lam, J.M.C. & Wodchis, W. P. (2010), is most often the result of a traumatic brain injury or stroke, but doesn’t affect intelligence, so it is not hard to understand the very real struggle of those experiencing it. In fact, a 2010 study involving more than 66,000 people about the impact of 60 different diseases and 15 conditions on quality of life found that aphasia has the largest negative impact on quality of life, more than cancer and Alzheimer’s disease.
Katz went on to say, “Without the ability to communicate, your basic needs and wants aren’t met.” We all have word-finding difficulty at some point or another, but that is not necessarily aphasia. Aphasia is when it’s beyond the norm. When you’re looking at a cat, you know it’s a cat, but you can’t come up with the word cat. You say things like “It’s furry and says meow!” to describe the word that you’re seeking.
Once you come up with that word and make that connection in your brain, you typically won’t forget that word again, depending on the severity of your aphasia. You might be a little quicker to respond to the word next time. If you have a loved one with aphasia, you shouldn’t always give her the word, but rather let her come up with it. If you continue to give her the word, and don’t make her work through it, she has no motivation to work harder to get better.
Mary McLeod from San Francisco, CA said, “Aphasia and migraines are the remaining symptoms from my TBI from 2013. Aphasia is like playing the kids’ game of describing something such as a zebra, but you can’t use the most common words to describe it: black, white, striped, lives in Africa, looks like a horse.”
My aphasia has greatly improved over the past three years of my recovery. I still find myself struggling for words when I am fatigued or stressed, but am impacted far less than the first 15 months of my journey.
There is always hope, and just remember that just because you have word-finding problems — it does not mean you have diminished intelligence!
Amy Zellmer is an award-winning author, speaker, and advocate of traumatic brain injury (TBI). She is a frequent contributor to the Huffington Post, and has created a privateFacebook group for survivors and also produces a podcast series. She sits on the Brain Injury Advisory Council (BIAC) through the Brain Injury Association of America’s and is involved with the Minnesota Brain Injury Alliance. She travels the country with her Yorkie, Pixxie, to help raise awareness about this silent and invisible injury that affects over 2.5 million Americans each year.
In November, 2015 she released her first book, “Life With a Traumatic Brain Injury: Finding the Road Back to Normal” which received a silver award at the Midwest Book Awards in May, 2016. Her second book, “Surviving Brain Injury: Stories of Strength and Inspiration”is a collection of stories written by brain injury survivors and caregivers and was released November 2016. for more information:www.facesoftbi.com