April 2022

Aphasia, headlines in celebrity news yesterday.  Bruce Willis is stepping down from his acting career due to aphasia.  So what is aphasia and why does thinking about it and writing about feel like I’ve been punched in the gut?  Why does my throat feel tight and my breathing more quick?  Why is my fight-or-flight response on high alert right now?

I have aphasia and I have had it for years.  Approximately 6 years.  It is one of the many symptoms of MS that has changed my life. It is one of the main reasons I no longer teach.  It is one of the main reasons why I am so fucking tired everyday of my life no matter how much sleep I get. It is exhausting to live with such cognitive impairments.  

Fortunately for me, the symptoms of aphasia are mild now. Thank you Clinica Ruiz and the HSCT (Haematopoietic stem cell transplantation) I had there in August 2018.

So what is aphasia?  The Mayo Clinic defines it as a cognitive condition that affects the ability to speak, write and understand language.  Symptoms of aphasia include trouble speaking clearly, trouble understanding speech, trouble writing clearly, trouble understanding written words, trouble remembering words, and trouble remembering object names.  

I understand this because some of the first symptoms I remember are aphasia related.  At the beginning of all of this MS stuff, I combined words such a dollar and Áine to donya, which happened just last night. I spoke sentences with words in all the wrong places .  I remember laughing with colleagues at work about it.  It sounds really funny, until it isn’t.

More and more signs of aphasia showed up in work.  Every single time I wrote, it was a disaster.  Too many misspellings to count which meant more and more time to prep for the days’ lessons.  And on top of that, writing that was illegible.  I had always been so proud of my handwriting because I am a lefty and it was good. Coworkers used to comment on it and ask me to write on the chart paper in meetings. That’s big time as a teacher. That went away quickly when my handwriting almost became illegible. Who knew aphasia caused physical symptoms such as illegible writing?  Aphasia causes weakness that can make it very difficult to hold a pen and control hand movements well enough to write.  

This is still a hard pill to swallow even today. Not too long ago, someone suggested journal writing, actual writing, not typing. I was completely opposed to it because it just makes me sad to remember what I’ve lost.  Many people who have had autologous Hematopoietic Stem Cell Transplant like I had, journaled all about their journeys. This was way beyond my skill set at that point. As you can see, I love to write. I wish I could have documented such a monumental part of my life but I couldn’t. 

I love all things ELA, English Language Arts.  Even though I will never be exactly as I was before MS and aphasia, I have fought to get back to the point where I once again enjoy writing and reading and I am pretty damn good at them, too.