Updated: Jan 13
Aphasia: an impairment of language, affecting speech and the ability to read or write. (aphasia. org)
It was the weirdest thing. I went in to Joe’s room one morning to help him get ready for an appointment. He was already up and sitting on the edge of his bed. He looked at me and said something I didn’t understand.
“Sorry, what did you say?”
He said a few more words. Well, not words exactly, but sounds that sort of resembled English words. But none of them made sense.
He continued looking at me intently.
I knew then that something was very wrong.
“You’re having a hard time speaking?”
He just pointed at me as if to say, “that’s correct. You got it.”
I’m pretty good at faking confidence (several years of teaching sixth grade in gang territory honed that skill). So while my stress adrenaline shot up, I said something like, “Hm, that’s fascinating. Okay, I’ll call the doctor and see what’s up.”
Anxiety: apprehensive uneasiness or nervousness usually over an impending or anticipated ill. (Merriam-Webster)
His doctor told me to get him to the ER right away. An MRI showed aggressive tumor growth and hydrocephalus. He was quickly scheduled for surgery to install a shunt in his head to drain the excess fluid and hopefully relieve pressure on his brain.
The next few weeks were a fascinating study in language expression, as Joe labored hard to regain his speech. He later told us that he knew the words he wanted, he just couldn’t get his mouth to cooperate. For practice, I would say a word—or just a syllable— and he would repeat it, but at first it came out all wrong. He would gesture again and again for me to repeat the same word, and each time he would try to say it correctly. He would keep working until he got it right. And then we would cheer.
Writing was also a problem. His brain was not communicating properly with his hand, and nothing he wrote made sense. For this reason sign language was not an option; neither was typing.
For anyone to lose the ability to speak, read, and write is a serious and discouraging thing. But for a songwriter/poet, it’s especially disheartening. Joe tried to keep busy gardening and helping around the house and neighborhood, but he was not able to do the things he loved most: write and sing. (He had long since given up two of his other favorite things: hiking and martial arts).
Can you imagine being locked inside yourself, unable to communicate? I can’t. But it must be a very scary place indeed.
The shunt did its job and relieved pressure on Joe’s brain. Slowly, and with much hard work on Joe’s part, his language returned, a few words at a time.
Relief: A feeling of reassurance following release from anxiety or distress. (Oxford English Dictionary)
We had several more bouts of aphasia in the ensuing three years, usually caused by tumor progression or problems with medication. One time he just stood at my office door and looked at me—he couldn’t say a word. With each episode I felt that familiar apprehension in my gut, but experience is an effective teacher. We would discuss with his doctor what we needed to do to fix the problem and make the necessary adjustments. And each time Joe worked himself back to fluency.
Aphasia was a major nuisance, but Joe didn’t let it define him. Nor did cancer itself define him. He refused to be a victim. He was defined by his character, as we all are.
I believe he has his voice now, and will never lose it again.