“How long ago was your stroke?”
That’s what everyone you meet wants to know. Your doctors, other families with aphasia, and therapists…it’s a way of measuring where you are today in your recovery. Families with aphasia may use this marker to compare themselves to others with aphasia, but this can often backfire. What happens when you meet someone you perceive as doing “better” than you and their stroke occurred after yours? What about that guy you met who had his stroke 9 years ago and you say “that guy still can’t talk”? Both situations lead to questioning your own performance and goals.
Many families with aphasia believe that they have a limited time in which to make progress, but this is only partially true. While the most significant changes may occur in the year after the stroke, progress can continue indefinitely. Many physicians tell families that they’ve got less than six months to make progress, so as that six month mark approaches, the fear of failure increases. A certain amount of aphasia recovery is mindset, and if your loved one’s mindset falters, they can begin a negative feedback loop–they feel defeated and pointless, so they don’t work much on the aphasia, so they don’t see improvements, so they feel there’s no point, and so on.
I’ve had clients at my program who are approaching a stroke anniversary take it very personally that they still have aphasia. Looking to a timeline as an end goal can be motivating at the beginning, but often only results in disappointment and giving up. They may think, “in a year, this nightmare will end and everything will be back to the way it was”. When that anniversary approaches, it can be important to gently remind your loved one that this is journey that takes time and effort. The pay-offs may be small but are still very significant. If possible, write down something every week or month that your loved one did that was a victory towards recovery. It is difficult for people with aphasia to see their own progress, so giving concrete examples helps point out these victories. If your loved one is a perfectionist and doesn’t believe you, photos or videos of their first few months after stroke can provide unbiased feedback.
There is no timeline for aphasia recovery. Unfortunately, it takes as long as it takes. Celebrate all of the victories, big or small, on the stroke/aphasia anniversary and keep your eyes forward. It’s a long, hard road, but they can keep improving.