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- Written by Saralee Perel Saralee Perel
Last week my husband, Bob, and I had coffee and muffins with our friend, Marilee.
This was brutally hard for Bob. He has an advanced neurological disorder called primary progressive aphasia, which means he can’t find words.
He said, “I’d like a cranberry _____,” but couldn’t come up with the word “muffin.”
Bob’s PPA has progressed dramatically, sometimes leaving him without the ability to say even one word.
When we meet others socially, he keeps silent for fear of losing words. Sadly, he feels shame and embarrassment. But for the very first time, I watched as he spoke up about his disease with Marilee, who’s about the most compassionate person in the universe.
“Can you imagine having a brain like this?” he said to her. “I know what a ____ is,” he pointed to a muffin, “but I can’t ____.” He couldn’t finish the sentence.
I sat there in awe of Bob’s bravery. Until then, he’d been trying to hide the problem by never picking up the phone, by never speaking to others, by having me say the sentences he cannot say.
Seeing him opening up with Marilee gave me the idea that instead of him hiding in his isolation, maybe he could bring it up ahead of time.
Bob was horrified. “I can’t tell people I can’t talk.”
“Oh sweetheart,” I kissed his tears. I wanted to say, “They already know,” but I just couldn’t. I said, “Tell me what you’re afraid of.”
“I’m afraid of people saying something bad, like that I’m stupid.”
In fact, he had said that to Marilee, who said, “You wouldn’t want to hang around with people like that in the first place.”
Bravo, Marilee!
That night, it took Bob and me over two hours to compose one crucial paragraph that explained he is no longer able to express himself.
The following day, we met my friend, Gwenn, for lunch.
Bob’s world changed during that lunch. So did mine.
You see, Bob took the small piece of paper from his pocket, and read aloud to Gwenn the words he so carefully wrote the night before:
“Just so you know, I have a neurological problem that makes me have a tough time coming up with words. But I can understand you. So please bear with me.”
Naturally, Gwenn was lovingly supportive.
When I asked Bob if publishing this column was OK, he said, “It’s more than OK. Now I am free!”
When I emailed Marilee for permission to use her name. She said, “I wouldn’t overplay my role. Bob’s the real hero here.”
And so, if you see Bob, he will probably read his note to you. Please give him a big, congratulatory hug.
He might not be able to say, “Thank you.” Although his words may not be working, his loving heart still does.
Nationally syndicated award-winning columnist Saralee Perel can be reached at sperel@saraleeperel.com or via her website: www.saraleeperel.com.