Yes, there are actual words to account for my absence here in this space over the past six months or so. And words to account for why over the past year, I haven’t been posting in any regular fashion. Strings of words even.
Sentences such as…
The whole thing started almost three years ago when my mom thought she had bit her tongue. A few months later, her tongue hadn’t “healed” and you could hear it in her speech.
Maybe it’s shingles? Maybe it’s Bells Palsy? What about Lyme’s Disease? Or, Bulbar Palsey? Or, God forbid, ALS?
And two years ago, in this month of April, in this very chair that I’m currently sitting in, looking at this same computer screen, I read a string of words that said,
Life expectancy for Bulbar ALS is 2-3 years.
And I shook when I read that. An electric shock went through my body and my stomach felt hot. I sat there for a long time, with my hand over my mouth, staring at that string of words and I could feel my heart beat deep inside my ears.
Nobody was really sure what was ailing my mom. Every doctor she went to differed in his or her diagnosis of her progressive symptoms. Over the course of a few years, the possibilities were narrowed down to Lyme’s Disease or Bulbar ALS (Lou Gehrig’s disease.)
My mom gave all of her energy and emotion to the Lyme’s Disease diagnosis. There is no cure for ALS. It will eventually take your life. But with Lyme’s Disease, there is treatment. There is hope.
Growing up, whenever I’d ask my mom deeply personal questions, she’d laugh it off by quoting her mother who always said, “Don’t air your dirty laundry to the neighbors.” And that was that.
She never talked about whether she thought this diagnosis was wrong. About what would happen if the treatments didn’t work. About how she felt living inside a physically declining body. About the possibility of death. Not when she lost the ability to speak over a year ago and had to communicate by writing on an LCD writing tablet called a Boogie Board. Not when she could no longer eat through her mouth. Nor when she could no longer walk.
By a single glace from her eyes to ours, we knew that any questions regarding negative outcomes were forbidden. Any discussion of her illness outside immediately family without her consent was also forbidden.
She bravely and privately handled every uncertain day with grace and stoicism.
Me being me…a word person with wide swings of emotion…struggled with not being able to discuss her declining health with her. Her feelings about it.
Last fall, I was sitting next to the bed that had become my mom’s home. There were caregivers coming in and out. The windows were closed. The Chew was playing on the TV and Catherine McCord was on that day making her Pumpkin Pie Tarts. My mom was tapping out text message to her friends, and writing on her board, saying things like, “Those Pop Tarts look yummy. Didn’t you meet Catherine last spring? Now that I’m thinking about it, those pop tarts might be too much work.” Just another day of watching cooking shows.
And in that moment of smells and noise and emotion and stale air and people coming in and out, I wanted to fling the window open, put her pen down, take her face in my hands and ask, “Mom?! Don’t you just want to shout from the top of your lungs, ‘FUCK THIS!!!’??
But, I didn’t move. I sat there silently with my hands wrapped around my cup of chai tea while activity buzzed around me. And, of course, my mom would never yell that. She never swore and she wasn’t prone to extreme emotion.
The Sunday before Christmas, my dad called in the late afternoon to say that my mom’s breathing was labored. I better come over.
When I arrived, it was almost dark outside. The house was quiet and dim except for the lights on the Christmas tree. No caregivers were to be found. I slipped down the hallway to my mom’s bedroom. My dad was sitting in the upright chair next to his spouse of 48 years tenderly stroking her arm. My mom rested quietly on her inclined bed. “Hitched for the Holidays” was playing on the Hallmark Channel.
We have never been an overly affectionate family. Hugs upon greeting someone and saying goodbye – yes – but cuddling, holding hands and such have never been our style.
In that moment, I climbed up on my mom’s bed and cuddled next to her body, my head on her shoulder, like I haven’t done since I was a little girl.
She gently reached over and patted my hand with hers. The long fingers. The custom wedding ring with emerald and diamond stones. The self-manicured nails.
My dad asked her if she wanted to watch anything else on TV. She shook her head and wrote, “Hallmark” with a smiley face. My dad patted her arm and said to her, “My sweetie loves her Hallmark channel.”
We stared at the TV while the full volume of what was not being said seemed to fill the room with warm, compressed air like inside a balloon.
We didn’t talk about death. We didn’t talk about her illness. Not about ALS versus Lyme’s Disease. Thoughts on life. Thoughts on life after death. Thoughts on my life without her. What she’s learned in life. No, I want you to know. No, have a great rest of your life. No, don’t waste a minute of it. No, I’m scared.
Instead, we sat in silence watching a grown-up Joey Lawrence from the ‘80s sitcom, Gimme a Break, in a cheesy, made-for-TV Hallmark holiday movie.
But, really, what is there to say during those final moments that can actually be expressed with words? You hope that you haven’t saved up everything you want to say to someone as important as your mother until the end. That you told her regularly what she meant to you, what she has done for you, how she’s inspired you and what you are proud of her for doing in her life. And I know for certain that I did that over the years. But in your final moments with her, there are no words to describe the impending loss.
At some point, I felt my mom squeeze my hand and break the silence by tapping on her board.
I looked over and she’d written, “I’m glad you are here” with a smiley face.
I laid my head back down on her shoulder, squeezed her hand, and said, “Me too.”
My beautiful mother passed away on December 30th. I still can’t believe it. Even typing those words seems surreal. That particular string of words cannot really be a part of my life but, alas, they are.
So, yes, I’m back but I’m changed. Life is different. And my corner of the world wide web will be different.
I feel such built-up excitement over where I will be taking this space over the next few months, six months, years. I hope we can enjoy the journey together. It’s time. I know my mom would want me to get back on it. She always said during times like these, “C’mon, get off the pity party and get to it, Care!”
Please do not feel like you need to leave a comment unless the moment moves you. Death is awkward and sad and emotional and more often that not, words about loss are hard to come by.
I needed to put these words out there because that’s how I make sense of life…through words.
Instead, move away from the screen, pick up your phone and call your mom, your dad, your spouse, your child, your best friend. Let that person know what she’s done for you, what it means to have him in your life, how she inspires you, and what you are proud of him for doing. Go. Git. Do it now. Don’t wait.