I meet a LOT of families with aphasia—younger, older, married, divorced, executives, soldiers, students—you name it, anyone can have aphasia. The part that always amazes me is that, even in the middle of a metropolitan area, this family with aphasia may not have met ANYONE else with aphasia. When you are “alone in the world”, you tend to notice aphasia behaviors your loved one exhibits and may think “wow, this is really weird stuff”. You don’t know if this is temporary or chronic. You search online relentlessly, looking for information and answers.
When you look at the aphasia your loved one has, you may observe a variety of behaviors that you view as positive or negative. On the positive side, you may feel that his/her comprehension is pretty good or that he reads the paper every morning. On the negative side, you may think that he has memory issues or that’s he’s embarrassing to have around your friends as no one can understand him. I’ve even seen families with aphasia blame their aphasic family member for not getting better faster, as if the aphasia is the result of that person’s laziness and not a neurological issue. It’s crazy but true—you don’t have any other guidelines for what to expect.
When you don’t have a large sample of other folks with aphasia around you, you don’t realize that what you’re considering a problem unique to your loved one is actually pretty common in aphasia. For example, it’s pretty common to “have a catch phrase” or automatic speech that is over-used. It’s common for the person with aphasia to have little awareness of how much and what kind of information they’re giving the listener. It’s common to become isolated from groups because it’s too hard to keep up with both speaking and understanding. It can even be more common for the person with aphasia to become sadder or angrier more easily because he either doesn’t fully understand or because he can’t get out a simple thought when he wants to.
One of the best things about having the intensive program is that families from all over the world get to meet other families with aphasia. They share in the triumphs, socialize after hours, encourage each other, and provide that shoulder to cry on. While as a program we provide the positive support, hope and understanding, it’s the other families in the same aphasia boat who know what it’s like 24/7. I’m very happy that we can help families meet who can form lasting friendships—it makes the day a little brighter for all of us.