What It Really Is Like To Have Aphasia
“Art, you know that thing on the car — the thing on the wheel?”
“What wheel? The steering wheel?”
“No, the one with the tire.”
“Well, what about it?”
“Well, I noticed the middle part is gone.”
“You mean the hubcap?”
“Yes, the hubcap.”
Seven sentences to pinpoint the word “hubcap.” An hour later, or the next day, or a month later, the word hubcap may spring readily to my lips.
“Does ‘i’ come before ‘e’ in the word thief? It doesn’t look right.”
If you don’t know the game of cribbage, you may skip to the next paragraph. “How much is 15 and 87” (23) “What do I need to make 31?” That’s today. Tomorrow, I may not have any problem with addition.
Why do I write “23” when I mean “32?” Why do I point right when I want my husband to make a left turn? Or say “no” when I mean “yes!” Oops! There are a lot of “oopses” in the life of a person with aphasia, and the examples cited illustrate that my aphasia is still a daily problem nearly 20 years after my stroke. My aphasia is almost, almost, unnoticeable most of the time, depending on what I am doing or how I am feeling. Fatigue, stress, the feeling that the world is going too fast, can all cause problems for me. If I am calm and relaxed I have less trouble with aphasia.
The simple definition of aphasia that I use is: the loss or lack of ability to speak, write, comprehend or calculate. This is not the textbook definition I used when I was teaching medical terminology. Then, I could not possibly have understood, in real life, what aphasia means.
One of the problems I have is pronouncing some polysyllable words, especially technical terms or foreign names or words, although even common terms stump me. I find myself trying to pronounce a word and repeating it wrongly, until some kind soul comes to my rescue and helps me over the hurdles. Conversation once again flows smoothly — until the next hurdle.
However, my biggest problem is word retrieval in both writing and speaking, as well as a decrease in available vocabulary. When I am in a nostalgic mood and rummage trough the writings of the years previous to my stroke, I realize the difference between then and now. Where did all the words go that were at my command then?
When writing or speaking, there are times when I want to actually grab, right out of the air, the word that is eluding me. I can see parts of it in my mind. Sometimes I try to write it in the air, actually forming the letters, and finally, finally, speaking or writing it. It is not only a word which eludes me, but a phrase — a phrase that expresses in a few words a concept which would take 100 words for me to express. Sometimes, not even my trusty dictionaries or my thesaurus helps me. Then I turn to my family or friends and ask them to help me. It is so simple for them to fill in the blanks.
Another frustration! How many times have I had to ask someone at the movies, or watching TV, or listening to a lecture, “What did he say? What did he say?” I miss the first few words. My hearing is fine. My processing is not. I call this a time-delay. It takes me a few seconds to really understand what the speaker is saying. Hence, “What did he say?” Many times, to be sure I am understanding correctly, I ask the speaker, be it friend or colleague, to repeat what was just said.
Don’t give me verbal directions. Don’t say, “You drive two miles, then make a left turn and drive two more miles, then make another left.” I stopped listening after the first turn. Instead, draw me a sample map. That’s what I do when I am driving to an unfamiliar place.
Don’t expect me to take notes. I can’t listen, process and write all at the same time. If I am on a committee and need notes, I tape the meeting. If I plan to attend a class or lecture, I ask permission to tape record.
Tell me a joke or a funny story and I will laugh and enjoy it, but don’t expect me to remember it. I used to have a store of jokes. Now the humor I initiate comes spontaneously, unbidden, when I speak words I had no intention of uttering, or when I spout nonsense words. For example, “pook-a-bee” instead of “peek-a-boo,” or “sandbury cratch” instead of cranberry sauce. Yes, I have said those words. Of course, these words or phrases have become family staples of humor. There are also some unprintable words not fit for a family newsletter. It will always be a mystery to me how these unbidden words, with no intention on my part, just slip off my tongue. Most of these slips occur in conversations among friends and family members when I am relaxed and not being judged by outsiders. I love humor, so if my aphasia sets off belly laughs in my family, here’s to my aphasia.
Don’t embarrass me by asking me to read aloud, pray aloud or even recite nursery rhymes of sing the lyrics of a song. You might end up like some of my family members, holding their sides from laughter. I have to laugh, too, because that irreverent aphasia genie within me turns my words in to an unintelligible language. Small intimate groups understand my problem and bear with me when it is necessary for me to verbalize aloud.
Before my stroke, I was an avid reader, and it has taken me many years to really enjoy reading again. However, reading tires me for it is an effort. Sometimes words get out of order or mixed up and I have to go back to the beginning of the sentence and read each word individually until the reading flows smoothly again. Naturally, it takes me longer to read a book, but I am not in a race. You might hear me exclaim, “Wait, wait, wait! I don’t understand what you’re saying! Take it slowly! You’re giving me too much information too fast! Give me a chance to think and absorb this new information.” I hate having to explain that I had a stroke and have difficulty processing, but have found that being up front with strangers pays off in the long run. They tend to be more considerate.
Life in the fast lane is no longer feasible for me. Even watching my 11-year-old granddaughter play basketball is too fast for me! I’m so much fun to be around when the spectators groan or cheer and I am saying, “What happened? What did I miss?”
Aphasia is now just a part of my life and of me; I do not consciously think of it as a separate entity of my stroke. To me, my aphasia was a gradual absorption — an osmosis — that guy — that dancer — the one from Russia — you know — his name starts with a B — Bar . . .