Isolation in a Crowd

Don recently felt isolated and sad in a gathering of people he did not know. A group of men stood and visited among themselves not far from where Don sat, but they did not engage with Don. Later Don told me, “They think I’m dumb.” That is what Don concluded, even though I doubt if people think that or realize how they may be ignoring him, He feels bad when he cannot follow fast conversations and cannot think or speak quickly enough to interject his ideas, so he often resists attending large social gatherings.

Don cannot easily stand for long or move around in a crowd to engage with people, so he finds a spot to sit, and people have to come to him. Years ago when Don used a wheelchair, he sometimes felt people literally and emotionally looked down at him. It is frustrating not to be able to interact with people the way he did before his stroke. That used to be one of his strengths.

Don still loves to listen to stimulating conversations, and he loves to think about deep matters. It is just more satisfying for him to interact one-to-one or in small groups of people.

What helps us cope and gives us hope:  Don cultivates many individual and small group relationships that are very satisfying to him. For Don’s sake, I need to try to remember not to talk too much when we are with friends and instead to turn conversation toward him. Don always feels so good when people ask for his opinion. He often expresses profound insights. He is not “dumb.”

Questions for our readers:  Do certain social situations make you feel “dumb?” What can the rest of us do to help you avoid or overcome those feelings?

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Aphasia Complicates Our Communication

Don asks, “What time are you leaving for lunch?”

“At 11:30, about an hour and a half from now” I say, simulating with my finger a minute hand going around one and a half times.

Thirty minutes later, Don says, “Rosella, don’t you have to get going for lunch?”

“I have another hour.”

Then Don says, “Oh, I thought you said……”

Both of us thought Don understood what I said – but he didn’t.

Much of the time, Don comprehends what he hears, but much of the time, he doesn’t. There’s no way to tell, and it’s impractical to verify every detail of every sentence. He confidently says something, and we both proceed, as if this time he has said what he meant – only to find out we’re mistaken.

When I can’t tell whom Don is talking about, I have to ask questions. Early in the conversation, I may point and ask, “Is the person a man, like you or a woman, like me?” Don regularly mixes up the gender of pronouns. I then try to tell him something about the person I suspect or ask him to tell me additional information about the person. Sometimes we have to recycle our questions because one of his answers took us down a wrong route. It often takes us several minutes to figure out what Don wants to say, when it takes normal people seconds to accomplish the same.

What helps us cope and gives us hope? We’ve learned we have to work to understand what we say to each other. Sometimes we give up, but with some patience, we usually get to the bottom of the truth. If I get the gist of what Don says, I try to let a few of the questionable details pass. We are also grateful Don can speak at all, when some stroke survivors cannot express any words.

Question for our readers:  What is one example of your struggles with aphasia? What helps you cope and gives you hope?

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