He Used To Be…

Identity Thief

You should have known Bob before the stroke. He was so smart… so funny… so sensitive…

I wish I had a dollar for every time I heard something like those words. Sadly, family and friends sometimes do believe that the stroke and resulting aphasia truly changed who the person was. Why is that?

Well… having aphasia can be like experiencing identity theft! When the words aren’t there or don’t come easily, people begin to lose sight of who the person is behind the struggle for the words. So many times, a husband or wife has told me that a loved one has changed, is not who they used to be!

Our sense of identity – of who and what we are – depends heavily on our communication. We choose what we say and how we say it as an expression of our identity or self. And we rely on other people’s reactions to what we say to help us feel validated as a person.

If I contribute an idea to a planning session and someone says, “Good for you,” I feel smart. If I get the waiter in the café to ask me questions about my job because of something I’ve said, I feel like I’m not just another customer.

We use our communication to share bits and pieces of our life story. We may describe an important event from our past, or may explain why we feel a certain way about an issue. People may think of us as “funny” because of the quick “one-liners” we throw out in a conversation.

Even everyday routines – like reading and talking about the newspaper together over morning coffee – are part of our identity. As one wife told me, “I think the thing I miss the most is just chatting back and forth at home about silly little things.”

We hear a great deal about how “personhood” is affected with diseases like Alzheimer’s, but it is also at risk when a person develops aphasia.

The problem begins in the health care system. Even if you can talk, the medical world treats you like an illness, not a person. You are dependent, damaged. When you experience aphasia, you can’t even tell others about yourself. You become the stroke patient in Room 202.

And the problem may continue when the person with aphasia comes home. Sometimes, family members begin to talk around the aphasic person – because it is just easier or quicker.

In public, like in a restaurant, at the first sign of trouble talking, the waitress usually turns to someone else to ask what the person with aphasia wants. While that doesn’t sound like a big deal, those moments begin to add up. After a while, the person with aphasia is at risk for disappearing from interactions.

Aphasia brings all kinds of changes to our life story.

Normally, when people go through major life changes, they find a way to talk about it, to build it into a new life story. For example, a woman who has survived breast cancer has an entire story about her illness, its diagnosis and treatment, and her current health. Those stories are part of who she is.

With aphasia, the “talking” tool for creating those new life stories is damaged…it doesn’t work so well anymore.

People with aphasia sometimes have to depend on others for the telling of their stories. After my husband had a massive stroke, I wrote up a short biography about him – emphasizing the many unique things he had done in his life. Overnight, the staff shifted from treating him like an incompetent object to an interesting man with a story to tell. While that worked in one setting, it didn’t solve the problem he still faces – how to tell his story, how to share his identity, given the fact that his communication is impaired.

There are no “quick fixes” to this challenge. All of us must remember the person behind the aphasia and must make every effort to find ways for that person to communicate who they are and to share their stories.

We have to validate more than success in producing words.

We have to validate the person as… funny… smart… caring… stubborn… whatever she wishes to be.

If you have aphasia, please share ways you have found to maintain your identity and move forward with your life story.

If you work with or care for someone with aphasia, share your ideas on how to make sure identity isn’t taken away by the aphasia.

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