By CeCelia Zorn & Tania Riske

I love this room of my own. Outside my apartment window, I see a man in a stocking hat and chopper mittens. He’s pushing a snowblower along the path winding between my building and the backyards of the homes that recently appeared out of nowhere. Last summer I watched couples walking there hand in hand and kids swinging from the playground monkey bars. Now, here in western Wisconsin, the snow and the wind, the snowblower and its charioteer, are one. Sometimes they are daily. Always, for all of this, I am grateful. 

And always, I try to say it.

“The snow is really coming down. The snow is really coming down. The snow is really coming down.” I’m mentally rehearsing these six words over and over. Sometimes I tap my finger on my leg or the kitchen counter, one tap for each syllable, trying to find the rhythm of the sentence. Eight determined taps for “the snow is really coming down.” These are the words I plan to share in a phone call with my daughter. While I know the exact distance from my home in Eau Claire to Roxie’s home in Savannah is 1,285 miles, she feels 10,000 miles away. 

It’s partly the distance, of course. My body wouldn’t hold up sitting in a cramped airplane seat, even if I could maneuver airport security, find the gate, and make my way onto the plane with my walker in tow. And riding that far in a car is out of the question, much less finding someone who would drive me across the country. 

But there’s more. 

Since my talking has become more grueling, I can tell Roxie doesn’t want to talk to me. When she answers the phone, I get nervous because I don’t want to hear her impatience or take more of her time. I try to make my talking perfect. I focus on finding the words, saying each word accurately, and then making a seamless sentence. But the harder I try, the worse it gets. 

I have Primary Progressive Aphasia. I was diagnosed two years ago. I’m certain I was having PPA symptoms for a couple years before I thought anything was wrong. When I mentioned my trouble finding the words, most people would chuckle, “Yeah, that’s what happens to us old timers,” or, “It’s hell getting old, isn’t it?” My Tuesday afternoon euchre partners probably didn’t even notice–they had their own worries.

I also began to notice my children staring off, edgy and annoyed.  

There was the time I saw some sort of altercation in the parking lot, which is unusual for my building filled with seniors at the end of a quiet cul-de-sac. Blinking blue and red bubble lights from two police cars reflected on my living room wall. Loud voices and a police dog added to the ruckus. When I saw my son the next day, I wanted to tell him about it and learn what happened. I couldn’t get the words “police car” out; the closest I could get was “ambulance.” I knew it wasn’t the right word, but David immediately locked onto “ambulance” and started drilling me about who the ambulance was helping. I kept shaking my head and trying to fix my words so he could understand. “Never mind, Mom, probably not my business anyhow,” David said with a sigh as he turned back to the TV. He didn’t ask any more questions. I couldn’t muster the confidence to try again. When the next round of Wheel of Fortune finished, I knew neither he nor I was going to take the chance of another failed attempt at communicating. We watched the rest of Pat Sajak and Vanna White in silence. 

But it was when I couldn’t write the birthday message in my grandson’s card that I insisted David take me to my doctor.  It was my grandson’s 18th birthday and he was joining the Army in the fall.  I wanted to tell him how proud I was of his accomplishments and how I knew he would go on to do great things.  

With a carefully-chosen birthday card and pen in hand, I couldn’t start the first words. This wasn’t writer’s block or a little trouble trying to write the perfect message–this was a complete loss. I couldn’t begin to count the cards I’ve written over the years that began with “Happy Birthday.” To every child and grandchild, extended family, and dozens of friends–all of them, every year.

Yet, here I was, not able to write those two words on Nathan’s birthday card. After a full afternoon, I managed to write “Happy Birthday” with embarrassing misspelling that took me three tries to correct. I couldn’t continue with the personal message, which was much more important. The words wouldn’t come to my head or my hand. My head throbbed with frustration and anger and fear. My hand squeezed the pen with all my might–nothing but white, cramped fingers. In the end, there was no use chasing my tail. The mailman would be here in an hour, and I needed to get the card to the mailbox. From my address book, I copied Nathan’s address letter-by-letter. I’m fairly certain I got that part right.

 I struggled to an eventual PPA diagnosis, spent and shattered. After referrals to three specialists, brain scans in a claustrophobic, clunking machine, and hours of interview and brain testing, a neurologist delivered his diagnosis. I think he was kind when he told me what to expect, although some of that’s definitely blurry.

But some of it is not blurry at all. I clearly recall staggering when the neurologist skimmed over an increasing language loss. "More trouble finding the words,” he said, stooped over his computer, his voice hushed. “Challenges with putting thoughts into clear sentences,” he continued, while signing a prescription for something or other. “Losing ability to read and write.”

Initially, his verdict seemed distant, wrapped in fog, nearly soundless. In the next instant, I translated and froze, wedged my hands under my thighs so I wouldn’t scream, so I wouldn’t race from the room or make a scene. This would be MY trouble finding MY words, MY challenges putting MY thoughts into complete sentences, losing MY ability to read and write.

My language has always been my gift, my soul. Now I faced a future losing all of it.

A second, much more ominous PPA characteristic echoed in the small exam room. It bounced from the neurologist’s gilded medical certificate from the university of somewhere hanging on one wall to the brain picture across from it and back again to the frame of gold. A hospital-wide Code Blue announcement barged into my shrinking space on the fourth floor. “There will be eventual dementia,” he said, looking back to his computer. “Loss of ability to care for oneself, loss of memory, forgetting friends and family.” More distance, more fog. Yet fully frantic, all of it.

At that moment, everything stopped—the echoing, the Code Blue announcement, the distance and the fog, all crashed. Sudden stillness.

It was just the words and me. I clung to them. Like so often in my past, words were all I had. It would be ME developing dementia. I would lose MY memory, I wouldn’t recognize anybody, I would become totally dependent on others. 

I walked out of that office seeing the world changed from when I walked in just twenty-three short minutes earlier. I knew I would never think, talk, or feel the same again. I knew then that words for me would forever be different.

David sat with me through the neurologist’s decree but he didn’t say a word, didn’t ask one question. Perhaps he had an idea of what was coming. He’s often been several steps ahead of me and certainly ahead of some of the institutions we’ve navigated. 

David looked broken that Diagnosis Day. Driving home, he mentioned he had had some conversations with Roxie. “We talked, but she’s in her own world, Mom. I don’t think she even hears me,” David said. “She keeps blathering on about some new restaurant she and her girlfriends have found in Savannah.”

“Coffee…stop…now?” I suggested, glancing at David but he kept one hand on the wheel and the other maneuvering his phone. “You like…Brewed Awakening…on the way.”

“It’s been a long day, Mom,” he said, after a couple of green lights. “And I’ve got a meeting later at work that I’m not ready for. I’m sorry.”

He stayed busy with the phone and neither of us said anything more. He turned into my parking lot. “I’ll walk you up. I’ll try calling this weekend. Don’t know though. Ginny and the kids begged me to go to the arcade with them on Saturday. And on Sunday, more painting in the bedrooms. We’ll see.”

Today, though, it doesn’t help to think about Diagnosis Day. I must focus on the here and now.

* 

I have a dentist appointment today at 2:30. I really, really don’t want to go. It’s just a cleaning but one of my teeth has been shooting zingers whenever I drink something cold. It works better if I side-tilt my head and pour my Coke inside my cheek, like from a pitcher. It’s pissing me off and I know I’m going to get slammed hard with an overpriced bill in the end. Mom gets on my case about this crap all the time, “Roxie, you must always safeguard your health!” Yeah, right, who has money to safeguard health these days anyway? And look where safeguarding got her.

It's almost 2:00 and Mom hasn’t called yet. She always calls between 1:30 and 2:00 on Thursdays. Which is fine, but it takes forever and it’s so hard to talk to her, and she has no clue about my actual life anyway. I mean, I guess it’s not like it’s really her fault. She’s never visited me since I moved to Savannah two years ago which is also fine but sometimes I wish she understood what my life is like here. 

And my pain-in-the-ass brother lays the guilt-trip on me about not being there to help with Mom. And, I gotta say, that’s not fine at all. 

A sliver of worry sets in as she usually calls by now. I sure as hell don’t want to miss the dentist. I don’t want to live with pouring my Coke around this screeching tooth for who knows how long, waiting for another appointment.

*

Rehearsing again, I tap my finger to the rhythm, “The snow is really coming down.” I am pretty sure I have the words ready. Gathering courage to pick up the phone, I close my eyes and remember a different time in my life. It was a time when my world was filled with joyful energy, strong and exciting people…and words.

It was 1983. I felt poised and confident walking into the principal’s office. I was responding to a call for volunteers to help teach Hmong children to speak English. Most of the first graders knew very little English, and now they needed to learn the language of the public school system they were entering. I had a college degree in language education that I admit a small part of me regretted never having put to use. For nearly two decades, I had stayed home with my children in my own childhood home on the edge of the UW-Eau Claire campus where my husband taught. Now my children were grown and I was excited to seize this opportunity. 

“I can do this,” I said to the principal. “As a matter of fact, I can’t wait to do this!” 

As volunteers go, I was hired on the spot.

Heading to my assigned, pocket-sized closet the first day at “work,” I held my breath, scared to death. Little feet pitter-pattered the hallway, child chatter filled the space, crowds of kids shuffled in well-order. I couldn’t understand any of their chattering—suddenly I wasn’t so sure. That moment was the only time I doubted my mission but somehow it all came together.

Their voices sang the alphabet and counting songs, their pencils matched words with pictures of a cat, a tree, a house. Their hearts and heads, hungry to learn and speak the language of their new friends and teachers, quickly picked up English. Always intrigued with language, I found renewed delight as my students independently wove together their own English sounds, words, and sentences. A blend of science and art, the tapestry of language and communication continued to inspire me.

My students and I explored new ways to make learning fun – so critical for these young learners. I knew that the language foundation that we built together would be the most important skill they would carry through their years in school and beyond. They made their way through elementary and high school, went off to college, became nurses and teachers and engineers, and now have children of their own. One student, who came to me as a fifth grader not knowing a word of English, earned his PhD in International Studies. When I retired, my students secretly prepared a traditional Hmong celebration for me, including procuring a full formal dress to wear for my “party.”

But now, “the snow is really coming down.” I’m ready—I think. Why are these phone calls getting so complicated? I try not to imagine Roxie waiting for my call. I know thinking about her would make this worse. 

My hand trembles as I begin dialing the phone. I wish the cord was long enough for me to sit closer to my window where I can see the snow. It might help me get the words out. 

Roxie keeps telling me to get one of those small phones that you carry with you. That’s way too much money, I think to myself, and besides, what does an old lady like me need a phone in my pocket for anyway? I manage to say, “Money” and “too old” when she brings it up. I know right then Roxie has turned from her phone and I can see her eye roll—again—over a thousand miles away. 

“Geez, Mom,” she will say. “Get with the twenty-first century, for crying out loud.” There is no way I will admit that I’m afraid I couldn’t figure out how to work it. Or, that I would make a mistake and call someone I don’t even know.   

But right now I do wish I wasn’t tethered to the corner of my living room with a phone cord.

It’s ringing once, twice. 

*

Finally. 

I reach to grab it. But then I have this weird moment where I just don’t. I just don’t pick it up. I don’t know why, exactly. Instead, I let it keep ringing until my voicemail kicks in. I guess I’m just annoyed and I don’t feel like dealing with her. 

Mom’s not really Mom anymore and I don’t know how to talk to her. Maybe I’m embarrassed for her or something. My real Mom was this whirlwind of energy who knew the right thing to say and do. She was always so sure and so right. So right, all the time. Her voice was strong, her words were sharp. Now I don’t even know what she’s saying half the time. And it takes FOREVER for her to say anything. I don’t have that kind of time.

My brother keeps talking about this “PPA” thing. He said something about Bruce Willis. I googled PPA and ended up with Professional Pickleball Association. Well I’m damn sure THAT’S not it.

I hold the phone and wait to hear what’s going to happen. Maybe she’ll just hang up and I can get going.

*

A couple more rings, then Roxie’s answering machine begins talking—so smooth and crisp. I can’t decide whether to hang up or wait for that beep. 

I hang on and it beeps. 

Deep breath.  

*

There’s this ridiculously long pause, and then a tiny voice that I know is Mom only because it’s Thursday afternoon.

*

“Hi Roxie.” So far so good. 

“It’s really…I mean…the, uh...”

I try to relax, try to grab the words that I had all lined up just a couple of seconds ago. I tap my finger on the arm of the chair. I tap it eight times, hunting desperately for the rhythm.

“It’s stow…stoming…” 

The panic gurgles up. It sounds like I don’t know what I’m talking about and I’m talking on the machine and I’m forgetting everything and I’m just so stupid and it’s only six words and the snow is down and I’m just so stupid and it’s really coming, and I’m talking on the machine and…. 

I remember what I want to say, I know what I want to say, but I can’t say what I want to say.

I know I need to pause for a second, take a breath, and reset my brain. My speech therapist would tell me, “Stop hitting your head against the wall.” It’s her way of telling me the harder I try, the more elusive the words get. 

Finally, after what feels like forever, I get one word, the one I needed. To the answering machine, I say, “Snow.” I know that’s as good as it’s going to get.

“Okay, bye.” 

I hang up.

I wonder if Roxie will call me back.

*

Now I stare at the silent phone. For the first time, I intentionally didn’t pick up the phone when Mom called. The enormity of what I have just done–or not done–hits me with part relief and part devastation. I wonder if Mom will call me back.