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Living with aphasia: Like a Scrabble game you can't win

When Mary Alice Bell was 9 years old, her mother was diagnosed with aphasia.

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Mary Alice Bell
, WRAL assignment editor
RALEIGH, N.C. — I never knew Bruce Willis could be a trigger for me, but he was. Recently he released he would be stepping away from acting because he has been diagnosed with aphasia. On that day as I sat at work, TweetDeck started lighting up with his story and facts about aphasia. Then came the email pitches from PR companies offering up medical expert interviews on aphasia. And there I was, out of nowhere, knee-deep in all my unresolved trauma. And all because someone famous has aphasia.
I have been living with aphasia since I was 9 years old. I don't have it, my mom does. When she was 43, she had a massive stroke while teaching an 8th-grade history class. We would learn she had an undetected rare growth on her brain called an arteriovenous malformation or AVM. It essentially is a very rare growth that developed in my mom's brain soon after she was born. Blood vessels in her brain began tangling and growing and 43 years and some days later, it popped causing her to have a massive stroke.

I'll never forget seeing my mom that day in the ICU. I pulled back the curtain to her ICU bed. I saw my dad first, he was sitting by her bedside holding a bedpan. My mom was violently throwing up in that bedpan between her panic screams for help. Before this moment, the scariest thing I had ever experienced was a clown.

The next thing I remember is running towards the exit doors. Before I could make it through the doors l heard my mom scream, “Where is she, I can't say it, I can't say her name, where is she, where is Mary Alice, I can't say her name, where is she?”

I didn't know it then, but it would take 8 months or so before I would hear my mom say my name again. That night my mom spent 12 hours in brain surgery while two doctors worked in shifts to get the tangled mess off of her brain.

After her surgery, I remember a doctor telling us the surgery went as well as expected. He said my mom was not going to die, but she would never be the same again. He would go on to say the part of her brain that deals with language comprehension and reasoning had been forever damaged, unfixable. He said moving forward she will know the word she wants to say, but she won't be able to say it. All this, he said, is called aphasia.

So, in short, my mom is now stuck in a lifetime game of Scrabble she's predicted to never win.

The next time I would see my mom she would be randomly walking into her hospital room, holding her gown shut with one hand and rolling her IV with the other hand, which smelled like a freshly smoked cigarette. Come to find out, aphasia didn't take her hustle. She was still perfectly capable of bumming a cigarette off a nurse and finding her way to the roof of the hospital to smoke it.

Once my mom made it home, she began intense daily speech therapy. After a few days, while she couldn't say my name, she was able to string together the words “Hey You," which would become my name for the foreseeable future. My mom and I would eventually find our way to speak to each other. Instead of fluid complete sentences, we must play a few quick rounds of the "$100,000 Pyramid" to get to the end of our sentences. But it works.

Interacting with people moving forward would become embarrassing and anxiety ridden. I would spend my junior high, and high school years, and beyond, constantly explaining aphasia to people. I would explain my mom had a stroke and couldn't speak normally, praying they wouldn't feel sorry for me and think my mom was dumb and damaged.

Eventually, my mom's inability to communicate would take much of our family away too. My parents would divorce, leaving my mom and me to figure out life, with only my oldest brother having our back. But even so, he and my other brother would eventually get married, and my mom and I would become unnecessary parts of their new families. Uncles and aunts would fade back into the photos and the stories they lived in before my mom had her stroke. But what we might have lost in blood, we gained in friendships twofold. My mom and I have a small but fiercely loyal group of friends that never seem to mind finding the time and patience to be around us.

The tricky thing about aphasia is that it doesn't take away a person's intelligence, just their ability to speak intelligibly. So as the years go by, patience not communication is the ultimate necessity when dealing with aphasia. But waiting for my mom to explain herself, can become a nuisance to anyone who thinks somehow her intelligence should have eventually healed her and changed the fact that aphasia is unfixable.

But since the trigger was pulled, I was forced to recognize the universe is screaming at me and I need to begin the process of finally being at peace with everything in between the words I wrote above. The pain and heartache my mom has endured takes my breath away and haunts my thoughts constantly.

One day shortly after the word aphasia was trending on Twitter I took a visit down to my decorated room at rock bottom, this time finding myself sitting with all the mean voices and letting them have their say for days. I sat in moments I wish never happened and cried for the moments that should have happened. I sat with my 9-year-old self at the top of the stairs while she listened to her mom do speech therapy in the kitchen.

Then a few days later, I went and picked up my mom and brought her to my house for Easter weekend. That weekend I watched her grandsons love her.

If I am being completely honest with myself about this trigger trip, I’m finding myself farther away from happiness than I find comfortable. I also find myself unusually calmer this time around. I'm realizing I have been using time as a motivator to resolve all my problems.

The older I get, the harder I am on myself for not having “everything” together. I focus on the amount of time I am feeling the pity, I focus on the amount of time wasted in the pity, and ultimately the pity time in relation to how old I am at the moment. I have been keeping score against myself and that makes me sad. Not just for me, but for my kids.

What if this trigger trip could have been the catalyst for my kid's eventual trauma? What if my inability to resolve my trauma causes theirs? How can I tell my kids every day to be smart, kind, and brave if I, their mom, am still hiding from my scaries. I have no idea.

So, for now I am just going to keep going. Just like my mom. She may never win the lifetime Scrabble game, but together my mom and I would kick butt at the "$100,000 Pyramid."

Mary Alice Bell is a single mom of two twin boys (but not a single parent) who keep her very busy. She is also an assignment editor at WRAL-TV.


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