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
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.