living with or surviving

Living With or Surviving?

A few weeks ago, we asked you whether you liked the term caregiver or care partner better? After the poll closed, we pulled together the results in a blog post, looking at how different groups felt about the two terms.

That poll made the wheels start mentally turning for Wendy Ellmo, M.S., CCC-SLP, BCNCDS, a brain injury specialist at Brain Links in Nashville, Tennessee. She wanted to know how people felt about two other terms:

A person living with a brain injury or a person living with a stroke

OR

Brain injury survivor or stroke survivor

Both terms, of course, refer to aphasia after a sudden event. There is also primary progressive aphasia, which is degenerative rather than sudden. Still, people with PPA may also feel a term fits better than another, and we’d love to have you fill in that answer on the poll, too.

Living With or Surviving

On one hand, “living with” implies that the recovery is ongoing. For many people, the effects of a brain injury or stroke are a constant part of life forever. Even when communication improves, you may find yourself “living with” aphasia in varying degrees for many years to come. It’s also a term that places the person—rather than the event or outcome—front and center. “Person” is the focus and what happened (the event) plays a supporting role.

“Surviving” implies that the event is over; the person is through the other side. Yet it’s not solely for people who feel their aphasia is less noticeable. Every milestone is celebrated under the term “survivor.” It’s not a place to reach; it’s a state of mind and acknowledgment of the hard work that goes into rebuilding communication skills.

We would love to hear your thoughts on the words, and add your feelings to our discussion. Fill out the form below to tell us your feelings about the terms, and we’ll post the results in a few weeks.

Do you have a question you want to pose to the community? Send us an email and let us know what you’ve always wondered about.

Comments

4 Comments

  • Pamela Talbot
    April 28, 2021 at 8:45 am

    Do you have “TapGram”?? I do know how to get it?? Can you please help me?

  • Peter Martin
    April 28, 2021 at 1:00 pm

    I’m tired of language changing every 40 seconds. I think this is a counter-productive conversation because at the end of the discussion you’ll reach a conclusion and everyone who voted with the 49% will be forever henceforth WRONG. Seriously, with all due respect, leave it alone. If a change is needed it will eventually come up naturally over time and should/will be self-evident at that time. If anything, keep hammering on Aphasia Awareness. Not wokeness!

  • Anonymous
    May 12, 2021 at 12:28 pm

    I tend to agree with Peter Martin. We don’t really gain much in the way of edification by seeing who likes to call me a “care-giver,” “care-partner,” or “care-provider.”
    Most people do not know or realize what Aphasia means, or what it is.

  • Brenna
    May 12, 2021 at 11:39 pm

    I agree with Peter and Anonymous. It’s hard enough to explain aphasia and most people still don’t get it. How many times have I heard, “he can’t speak, but can he write?”
    – Caregiver of a stroke survivor with severe expressive aphasia

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