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.

Selma Blair, Christina Applegate and Me

Selma Blair, Christina Applegate and me.  Who the fuck am I to be in the same sentences are these two Hollywood actresses?  Hmmm.  Up until a couple of years ago, I never would have put myself in the same category as two beautiful, famous actresses.  I wouldn't have thought of them frequently.  Wished I could talk to them. Now, believe me, there are famous people I have thought about being friends with before, like President and Mrs. Obama.  I thought they would like me if we ever met, and that we could be friends.  I thought maybe me and David Sedaris might cross paths one day and share our ridiculous projections that we put on people and situations and have a good laugh.  It just never crossed my mind to be friends with Selma and Christina.  Not that I did not like them or enjoy watching them on screen- I just didn’t know anything else about them and now I do.  

Now I know we could be friends.  We are in the special ¨SNOWFLAKE” club.  We are 3 of the nearly 1 million people in the United States living with MS and nearly 2.8 million people worldwide.  When you look at it that way, it's not that far-fetched that we could meet and become friends.  As of 2021, the population of the United States is 331.9 so only about 3% of the population has MS.   Then we can narrow that down to the percentage of mothers with MS in the U.S. and that is an even smaller percentage but way bigger than fathers with MS, not to dismiss the men, but it’s just facts.  And we can narrow that group down even more to middle-aged mothers with MS in the U.S.  and we are so close to being friends.  There is one more opportunity to make the group even smaller - middle-aged mothers with MS in the U.S. whose career was severely impacted by their MS.  Severely, like cannot do it anymore or require loads of modifications to carry on doing it and still feel like crap about the outcome because they will never be who they were before no matter how well they eat, how much the exercise, mediate, practice gratitude, take disease modifying drugs or do not.  They will just never ever be the same.  See we are getting there.  

We are in the SNOWFLAKE club.  Not the flake club, although sometimes I may come across as a flake because I forget people’s names, how to get places, where I put things, how to get back from places, where I am and where I need to be, or the words to the alphabet song or how to add and subtract.  All of these lapses in memory are courtesy of Multiple Sclerosis.  The thing is, I do not know if Selma or Christina have the pleasure of cognitive symptoms associated with MS, but when we become friends, we can talk about it.  See, the thing about MS is that not two people have the exact same disease course.  Some people, such as myself, have mainly invisible symptoms.  Numbness, tingling, headaches, body aches, spasticity, weak (I can even think of the name right now so I will come back to it, oh, I got it!) executive functioning skills.  Others have more visible symptoms including balance, foot drop, (swallowing, wheelchairs, cane).  Of course, if we were looking at a venn diagram, there would be those in the middle who have both.  In my mind, they are the unluckiest snowflakes.  Are the unluckiest snowflakes the ones that never touch the ground or the ones that end up yellow? It’s hard to know with a disease like MS.  Everyone has their own journey and cannot walk a mile in someone else’s shoes.  All we can do is be compassionate.

Anyway, back to the 3 of us becoming friends. Another hurdle is the distance.  I believe the two of them live in California which is on the West coast of the United States. I, on the other hand, live in Massachusetts, on the complete other side of the country.  We’re approximately 3000 miles apart.  Fortunately, we all live in the 21st Century and there is Facetime, or if they don't have the green bubble (iPhone users only!) we can zoom.  We want to make sure one of us has a zoom account so we can stay on for longer than 45 minutes.  I’m sure that wouldńt be a problem; I am more concerned that they would get together, in person, without me.  This is where the David Sedaris side of my personality comes in.  We would probably talk about our symptoms, laugh, cry, share our diagnosis story, how it affects parenting, other romantic relationships or lack thereof, and what it has done to our careers.  

We would also share what our personal lives were like Before Multiple Sclerosis.    Have you ever gotten to the point in life when you think, “wow, I’ve got it made.  Everything has fallen into place and life is amazing.  This is what it’s all about?”   I did.  Once.  For a very short window. Selma and Christina definitely did, too.