Today I went to the first of two days of the Australian Aphasia Association conference. The cool thing about this conference is that it's not run by speech pathologists or health professionals. It's by people with aphasia, for people with aphasia, and speechies etc are welcome to attend, but the focus is not on us.
Aphasia awareness is HARD. How do you increase awareness for a group of people with a communication disorder? You just keep at it, any chance you get. A lovely family member of mine said recently asked "Aphasia, that's trouble swallowing, right?" So close. Dysphagia is trouble swallowing and it's good that you made that connection. But APHASIA is my life's work, my passion, my main interest and it's not trouble swallowing. It's a communication disorder caused by acquired brain injury, most often stroke. It could be mild, with an occasional difficulty finding the right word. It could be very severe - someone might be able to say only one word (often a curse word - go figure!) or they may be able to say lots of words, but they don't make sense to the listener, even though the speaker knows exactly what they want to say.
This conference is amazing. I sit in the back of the room and listen to people with aphasia and their family members tell their stories. One man spoke about how martial arts has helped him with his balance, coordination and speech post stroke. He led us through several martial arts sequences as part of his presentation. A woman told us about her late husband, and how for 11 years he communicated by drawing stick figure pictures. A pediatrician opened the conference talking about his stroke and how he hasn't been able to work anymore as a doctor, but talked about what he has gained. A beautiful couple finished off the day speaking about their experience of giving, and how that has enriched their lives. The husband had a stroke 10 years ago and the couple had five young children. The wife said her main concern at the time was that he might have a limp. 10 years later, he is still in a wheelchair. When he speaks, it is laboured - it takes time, and there are pauses and hesitations, but he gets the words out. Last year they took a trip to the Philippines and saved a scrawny little dog, which led them as well to a young boy with autism who they have sponsored to go to school for the first time in his life. The love they have for each other is overwhelming. They don't feel sorry for themselves and they say that the rough times have helped shape their children, now mostly grown (the youngest is 16).
With my Phd, I get to interview these people. Often I am invited to their homes. They make homemade baked goods. They make me take things when I leave. They talk to me. They tell me about some of the hardest times in their lives. One man recently, when I was interviewing him (I know him from therapy and we have a couple of years of history) was trying to tell me many things, but is difficult to understand because he often uses non-words. I tried to use context and ask clarifying questions until I got what he was saying. At one point in the interview he was talking about how people don't know how to speak with him and he said "but you....love you!" It's taking the time to try and listen. I interviewed a lady last week. She is a lovely lady from Dublin. We spoke before the interview about family in Ireland and I told her about my dad's family in Dublin. When I was assssing and interviewing her, at times she would exclaim"Janey Mac!" which reminded me of my Irish family. Her daughter was there for the interview and emailed me afterwards to say that her mother had very much enjoyed the assessment and interview process and that my manner had put her at ease even though at times she could get tense speaking to new people. But this is not about me and trying to say that I'm so great and look at me talking to these people with aphasia. It's about them. It could happen to any of us, at any time. Who knows if there's a random blood clot lurking somewhere that could change any of our lives in a split second.
But anyway...why? Why am I doing this research? Not because yay me, at the end I can call myself a doctor. That's kind of fun, but not all that meaningful. It's because in this area research and AWARENESS are so important. I challenge all three readers of this blog, today, to go out and tell three people about aphasia. All I can do is try to make my tiny difference in this tiny area of life, which becomes massive to the people who are going through it. If you want an even bigger challenge - try to go to your doctor, or hairdresser, or anyone you need to make an appointment with and try to do that using only the words yes and no. And tell me about it! Tell me about who you educated about aphasia, leave a comment. I'd love to hear, and it would make me feel like my tiny difference is reaching that much further.
