My Life With Aphasia After Brain Injury
One of the biggest impairments that remains for me four years following encephalitis and its token brain injury is a speech disorder called aphasia. For me, aphasia means that my speech delivery is often extremely slow, slurred and connecting the dots between a thought and actually verbalizing it simply takes SOOO MUUUCH TIIIME. It’s as if my mind runs 100 km/hour but my mouth only runs 40 km/hour. Speaking requires so much brain power and is without any doubt the most draining activity that I undertake during a day. In spite of me trying my absolute best to keep on pace and speed up my speech delivery, it is simply always an effortful exercise…no wonder I often walk around with a dull headache from over working this part of my weird wonderful brain.
How does aphasia presents itself?
Unless you have some sort of speech impediment yourself, I don’t think one can truly imagine and appreciate how much of an impairment it is to not be able to communicate freely, without worries, without being so self-conscious, without having to work so hard to put words together and without experiencing that dreadful feeling of being judged on the way that you manage to articulate what you want to say. That in itself is draining and I haven’t started speaking yet! Then physically, it feels as if my jaw gets put in a vice restricting any movement and making it even harder to speak.
I’ve always been an outgoing, confident person, so the shift between being a talkative person that loves to be part of group conversations to being the quiet one in the room, self-conscious about every discussion that I try to engage in, has been and still is very hard to process. One of those persona I’ve been familiar with for the biggest part of my life and is still very much anchored inside of me, and the other persona feels like a complete stranger yet one that I need to learn to accept in order to cope on a daily basis. I still love to share my opinion but I’m very aware and at times embarrassed by my aphasia, so sometimes it’s easier to just keep things to myself.
Another massive impact that my speech impediment has had on me is that I now dread meeting new or unfamiliar people as much as you’d dread walking straight into a burning fire. See new people don’t know the old me, they don’t know what caused aphasia, they probably don’t realisz how much of a struggle speaking is for me, they wouldn’t understand how small it makes me feel and in a weird way, that adds an extreme amount of pressure for me to try to perform. I know it may sound silly, but we all want to put our best foot forward and it’s not any different for aphasic people.
So I’ll try my hardest to keep on pace, to speak normally and sometimes I can manage to do that for a short amount of time. I’ll put all my eggs in one basket to communicate as efficiently as possible in spite of the barriers that aphasia can represent. But once I’m done, that small basket often gets accidentally dropped on the ground leaving a heck of a mess to clean up. Putting the eggs into one basket means that for a given amount of time I’ve tried to make my brain work in ways that it can no longer operate. This often results in draining my brain energy really quickly leaving me with very little to operate the most basic functions later on. That’s when a crash occurs and the only way to bounce back will be to get some good rest and sleep. So consequently, I tend to avoid putting myself in situations where I know new or unfamiliar people will be. It avoids me having to deal with the ugly aftermath.
Something to think about: “Never assume that a person who has difficulty communicating has nothing to say.”
How aphasia affects conversations with others?
Lastly, for those who still remain and support me in my weird wonderful brain journey, I realize that aphasia also has a huge impact for the people that I engage in conversation with. It often means they too have to slow their own pace right down in order for me to have a fighting chance to keep on pace. They’ll have to allow for breaks in conversation so they can allow me to part take. They’ll have to turn the music off or right down to limit the amount of input that my brain has to process. They’ll have to chase any additional stimuli/distraction away (sorry kids, that often means sending you outside). It means choosing the right setting for a catch up to occur and they’ll have to limit the amount of people in a room, or else the brain gets overloaded and things start shutting down one by one (speech always being the first thing that my weird wonderful brain robs from me).
In short, I’m really aware of how it affects the whole room dynamic. I’m very self-conscious about all of those aspects and aphasia adds another layer of frustrations and sadness for me. I’m realistic enough to accept that I can’t expect people to always cater for my brain condition, so I’ll pop around for an hour or will not attend some events altogether, both isolating me further unfortunately. I don’t expect people to change their ways as life as usual prevails for them, but as I mentioned earlier the sociable/outgoing person is still anchored inside me, so when people are being extra mindful of some of my brain needs, it is greatly appreciated! After all, socializing is often a difficult but very important part of brain injury recovery.
Where does aphasia leave me?
My new found speech impediment pretty much leaves me sitting on the fence. I’m feeling stuck between having to choose to be that confident/outgoing person which will often lead to a crash and that less natural side of me, the quiet/introverted one, which allows me to cope with my current speech limitations. I feel socially awkward, I feel torn and I feel stuck between a rock and a hard place. How do you chose which persona to bring out on any given day? It’s unfortunately not always a win-win situation. I’m getting better at missing out, I’m slowly getting better at brushing off aphasia, and I’m getting braver at letting the world see some of the residual effects of encephalitis. Other days, I’m falling short on all of these accounts…and that’s OK too.
It’s taken me over a week to write this story, to find the right words and to think of the best way to portray how aphasia affects me. As you can imagine, the effects of this impairment are far reaching. Being prepared to show yourself when you are the most vulnerable takes a lot of courage. Since I initially wrote this story, I finally found the courage to do a few videos of my speech when aphasia takes over in the hope that others can relate to some of my issues. Imperfections are what make us human. Until then, thanks for reading and sharing.
Story originally published on the contributor’s blog.