My experience of aphasia

In early 2024, I was diagnosed with Wernicke’s aphasia by a speech and language therapist, although my written and verbal speech had been negatively impacted since the middle of 2020. This 2024 diagnosis was a positive intervention in my four year health saga to have my neurological symptoms be seen as a physical, not psychological, issue.

In the middle of 2020 I had an experience in my workplace where I didn’t understand what my manager was saying to me. I understood the topic. I could hear her words, but there a big hole where understanding and language was: I just couldn’t respond at all. I was taken home a few hours later as I didn’t feel well either. Around the same time, I noticed my speech was off. I started saying the wrong words, or making up words by joining words together. I could pick up that my speech was off. However, it took me longer to realise that my written words were also jumbled. I was typing away, in my professional capacity, sending emails and material, that I thought was just fine, until I read them at a later date, and realised that my written work had become jumbled as well. The language changes sat alongside other neurological changes, that were at the time, pretty concerning.

During 2020/21, there were times when I found it very difficult to communicate. My brain was struggling so much. It was often overloaded and unable to cope with any additional environmental stimuli: it often felt like my brain was on fire, or that I was under water. I developed a stutter. Mostly, people were very kind and patient in social situations as I bumbled away trying to communicate. There was only one incident I felt treated unkindly, as if was a nuisance, which is pretty good odds, all things considered.

Since 2024, there have been different chapters of improvement and possible decline in my communication. I am no longer able to work due to the wider neurological changes. I manage my brain energy, and certainly my reading and writing have improved. I manage my environment. When there is less happening, I am not too tired, one to one conversations, not too many emotions, not to much background noise, my brain and, therefore, my speech is a lot better. If I have to provide complicated or emotive material in a meeting, I have to type it and read it, otherwise I wander off topic, go a bit rogue, and generally end up just talking about whatever I like, whether that is on topic or not.

The diagnosis of aphasia, and then finding the NZ Aphasia Support Group, has been a real blessing. Jenny, our local facilitator, came to my home to meet me. It was the first time I had support that didn’t come with being assessed. She was so kind and supportive. With Wernicke’s aphasia, one has a tendency to ramble and roam in their speech. I am aware of it, but I can’t seem to stop it. Listening to others is no longer my natural strong suit. I remember apologising to Jenny in our first meeting, as I probably had done a bit of a monologue. Jenny kindly replied, “You don’t have to apologise for having an illness.” It might not sound like a big statement, but was big to me. I now attend our local aphasia support group. I find it humbling, kind, humorous, heart warming, heart breaking all in one. People with aphasia, are like all people, we have our strengths, weakness and quirks. Equally, people with aphasia, like all people, can be amazingly funny, strong, resilient, kind, and smart, regardless of our presentation, sometimes others might just have to work a little harder and be a little bit more patient to still see that in us; our brains, and hearts, are working hard, persevering, to try and connect with those around us.