Losing Our Memory and Finding Each Other

A battle with Lyme Disease decimated my memory right as Alzheimer’s did the same to my grandfather—but surrendering our thoughts brought us closer together than ever.

Losing Our Memory and Finding Each Other

I keep an eye on my grandfather while I stir the vegetables for Christmas dinner, the oil popping as I wait for them to turn grass green. He hovers by the kitchen table, which is turned long ways tonight so it can hold all the platters of food that will be passed around the dining room. He is waiting for the turkey to be done, as he is the one who has always carved it. His eyes have a hazy look in them. He is bent forward and he shifts his weight from side to side in a manner that he never did when he was well. Alzheimer’s has withered his mind to the point that it shows up in his posture now. He waits alone, though the kitchen is crowded — my uncles are standing by the doorway drinking, my dad watches the turkey, and my mother tends to the potatoes with an aunt standing at her shoulder, chatting. My grandfather interacts less and less with people, I notice. I remember doing the same — withdrawing when I was losing my own memory because simple conversations required more knowledge than what I had left.

Next to me, my mom takes the boiling potatoes off the stove and, for a moment, the cascading water drowns out all other sounds in the room. Then there’s the whir of the mixer blending the potatoes, and the cream and butter follows. People raise their voices. I eventually return to the vegetables, giving them more attention than they need. I keep my back turned to everyone in the room. Like my grandfather, I am timid when I’m around people now, as I can’t always place exactly who they are or follow their conversations, even simple ones. I am two years into treatment for Lyme disease and it seems as if I will never be well again, that I will have to settle for the fact that I’m just better than I was.

When I moved back home with my parents two years ago, I was fragile and weak. I could no longer read, didn’t recognize relatives, began sentences and never finished them. I had lost most of my hair and hobbled from arthritis when I walked. Exhaustion still describes my daily condition and I never feel its weight more heavily than at events like Christmas — one of the many celebrations that used to fill me with joy, but now deplete me, demanding more of my body than what I have to give.

I move to the side so my dad can open the oven and take out the turkey.

As my dad checks the temperature of the turkey, I plate the heaping pile of vegetables. My grandfather is still shifting his weight from his left foot to his right foot and then back again. He holds his hands up in a vague gesture, reminiscent of him rolling up his sleeves and sharpening the knives. His preparation for carving was always theatrical and thrilling and accompanied by laughter. It has been a long time since I heard him laugh.

Last year he carved as usual, but he couldn’t quite organize his mind to complete the task. It was a painfully long endeavor. Tonight, my dad sets the turkey on the table and begins to carve it. I see the hurt pass through my grandfather’s eyes and I place the vegetables on the counter, freeing up my hands so I can take his. It is warm and dry and rough and still strong.

“Let’s sit down,” I say. He looks at me blankly, and I try again. “Sentamos para cenar.” My grandfather has lost much of his ability to communicate, but at times he is more comfortable in his native Spanish.

He nods and, as he holds my hand tightly, I begin to walk with him across the kitchen. Even his gait has changed. He steps tentatively now, as if unsure of what his feet will meet as he places them down.

My grandmother smiles and nods at me as we sit down. She is enjoying being at my parents’ house, relaxed and knowing that here she can loosen her ever-watchful guard on my grandfather. My uncle slides in next to my grandmother. “Morris,” he calls across the table to where my grandfather and I sit, “You are looking really well these days. How are you?”

My grandfather doesn’t say anything. He looks intently across the table and nods at my uncle.

“He wants to know,” my grandmother says, pausing between each word, “how you are.”

My grandfather smiles and shrugs. An anxious look is in his eyes, a look I am certain I had when I was expected to engage normally with people but couldn’t figure out what they were saying. In those moments, I never wished for anything more than an interpreter.

“Dice él, como está?” I try.

My grandfather shrugs and smiles again.

“He’s good,” I say and let my grandmother lean over and explain to my uncle how my grandfather is doing.

My grandfather and I lean back in our seats, as if we’ve been excused from socializing. He fumbles his napkin in his hands and turns towards me. He opens his mouth and mutters something nonsensical, while gesturing with his hand. I imagine that he is clear on what he’d like to say. I used to do the same things. There would be times when I knew exactly what I wanted to communicate, only didn’t have the words with which to do it. It was a lonely time. I take his hand again and he stops trying to speak. We turn back towards the table and observe. For once, I feel like I have a partner in crime.

Two years ago, I was just like my grandfather is now. In fact, we began our slow and parallel disengagement from the world at the same time, over a decade earlier, although I only became aware of his condition at a family gathering five years previous. My grandmother and great-aunts were sitting on the couch, sipping their drinks and talking about my grandfather, who had just been diagnosed with Alzheimer’s. It was a time of low-grade panic in my family, as we tried to adjust to the news and wondered how much would be robbed from him by the disease.

“It’s so sad. He is such a smart man,” one aunt said.

“Mmmm,” the others intoned in empathy.

My grandmother sighed before speaking.

“I watch him,” she said. “I see him pretending to know someone when, really, he doesn’t recognize anyone anymore. He forgets words and names, and not just in English. Even his Spanish fails him now.” She sighed again at the heaviness of losing her life partner while he was still living.

“He gets lost coming home, too. And in a neighborhood that we’ve lived in for twenty-five years.”

One of my aunts turned to me and my sister. “You girls,” she said, “you have your youth, your health. Enjoy it.”

I couldn’t even nod at her. At the time, I was a sophomore in college and could never shake the heavy fatigue that cloaked me like a shroud. I stared at my aunt for too long, unable to move past my grandmother’s description of my grandfather. She may as well have been describing me and all the symptoms that I’d been hiding over the years.

Lyme disease, a tick-born affliction caused by the Borrelia burgdorferi bacterium, starts slowly. In the first stage of infection, a person feels vaguely unwell and tired, has a few light fevers and chills, and is a little achy, as if tomorrow they will wake up with the flu. The first stage can last for a few weeks or several years. In second stage Lyme, the fatigue is deep and constant and the muscle and joint aches become acute and limiting. Neurological symptoms characterize third stage Lyme — people stumble, slur their speech, and lose their minds. As it progresses, Lyme disease dismantles a person’s ability to focus and pay attention, to make memories and retrieve them, and to comprehend written or spoken language.

I attend to my grandfather because, in my worst years, the years before my diagnosis and subsequent treatment, I had slipped into the same haze that he is in now and I remember how terribly lonely it was to be cut off from other people, including myself. It wasn’t just that I couldn’t remember people or places, but that I was disoriented in all aspects of my life. I forgot where I wanted to go with my life and how I had gotten to where I was.

After I graduated from college, my boyfriend, Nathan, and I moved from the Bay Area to New York City. I’d been sick with Lyme disease for eight years, though undiagnosed, and struggling to hide the slow spread of neurological symptoms. I had the sense that time was running out, but, as no doctors had ever found anything wrong with me – and as I could not believe that any disease could so wholly shatter the mind, body and spirit of a person – I believed that I was neurotic enough to have created psychosomatic symptoms that were taking me down.

Six months later, Nathan and I broke up. I’d gone through two apartments and as many jobs, simply because I had no memory. I’d fail at simple tasks or forget the things I was supposed to do. When I was at work, instead of slowly building relationships with the people around me, each day I’d furtively try to piece together what their names and stories were. I was back in the market for an apartment when a friend from college, Angela, moved to New York. We began looking for places together, though I was so drained that I could barely prioritize a place to live over the immediate need to sleep.

I trudged through the February slush to meet her at an apartment, feeling like I was about to collapse. A realtor showed us around. The place was tiny, but it had hardwood floors and was filled with late afternoon light. We stood in the empty apartment and tried to imagine our lives in it.

I couldn’t focus on any future projections. All I could think of was laying myself down on the bare floor. Instead, I tried to maintain the appearance of a normal person as best I could and leaned against the wall, then slid down into a squat. I straightened my legs out in front of me after a moment and Angela joined me.

“Do we take it?” I asked.

“I don’t know,” she said. “We could keep looking. It’s the first one we’ve found.”

I thought about that. The problem was that my memory was so decimated that, because I couldn’t remember the past, I couldn’t project into the future. All I had was this moment of uncertainty, and hardly any trust in what tomorrow would bring.

“Why did you move here?” she asked me. “I mean, why New York?”

I shrugged and laughed her question off, as if it were nothing, to move across the country.

“Why not?” I said, though my eyes teared up when I responded so flippantly. There was something, I knew that there had been, a compelling reason, something that I had wanted out there. But by then I couldn’t even remember why I’d made the decision to move or even when.

“What about you?” I asked, deflecting to her.

“The publishing industry is here,” she said. “I’m a writer.”

I had nothing to say to that. I knew nothing so absolute about either my surroundings or myself.

In the end, we took the place. The days lengthened and warmed and we made our tiny apartment into a home. We waited tables and had internships. Then, one day in early summer, we made plans to meet up for a drink after work. When I arrived at the bar, she was already seated on a bench that ran along the length of window, talking and laughing with two guys. It was a normal sight for me as she seemed to always know someone wherever she was in the city. I walked over to them. She stood and we hugged and then I turned and saw the two guys were standing as well.

“Hi,” I said, smiling brightly at them and reaching my hand out to introduce myself, even as the one closest to me leaned in to hug me. His face took on a perplexed look and he slowly extended his hand.

“I’m Michelle,” I said, and then turned to the other one.

But the first one was leaning in towards me still. I looked at him and then at Angela, and saw from the odd way she was looking at me that I was supposed to know him. I looked back at him, about to ask if we knew each other, but he spoke first.

“Michelle,” he said, slowly. “You don’t remember me, do you?”

I smiled more brightly, as if that could cover up my not remembering him.

“It’s ok,” he said. “Nevermind. We were just leaving. See you around.” They waved at Angela and were out the door.

I turned to her.

“Who was that?”

“Michellllllle,” she said, dragging out the last syllable of my name as she worked out what to say. “You worked with him. You brought me to his birthday party. A month ago.”

“Oh, right! I didn’t recognize him,” I said, though I couldn’t remember ever having seen him before in my life.

I lived in fear of moments like this, when my failing memory would be exposed by others.

Six months — and three more failed jobs — later, I made the decision to move home with my parents, stunned by my abject failure at living. A month before I was set to leave New York, I had an appointment with a doctor. While I had long ago stopped searching for an answer that I didn’t believe existed, all my joints were constantly burning. I thought that perhaps I had tendonitis in all my joints and said as much to my doctor.

He scoffed. “You don’t get tendonitis in all your joints. Tendonitis is from overuse in one joint.”

“I do Pilates,” I said. “I use all my joints, every day.”

“No.” He shook his head absolutely waving off the possibility. “Rheumatoid Arthritis, maybe. Multiple Sclerosis, Lyme…not tendonitis. We’ll do some blood tests.”

A week later, my phone rang. My phone never rang. I was hanging onto life by a thread. I picked up.

“We got your blood tests back and would like you to come in this week.”

“Is something wrong?”

“We’d like you to come in to talk about it.”

“Please tell me if something is wrong.”

She paused.

“Please,” I said.

“Your tests have come back positive for Lyme disease, but we want to retest you.”

I nodded.

“Michelle? Can you come in?”

“Yes,” I said.

At Christmas dinner, we pass the plates again and take more of whatever it is that we want. The party is jovial; everyone is getting a bit redder in the face, a bit louder as they talk. My grandfather and I are silent. He wriggles a little bit in his seat and looks around, as if searching for an escape path.

I touch his hand.

“Do you need something?” I ask.

El baño,” he says.

My parents’ house is not new to him. It is the same one he has visited many times each year for the past thirty-five years. But tonight, it may as well be the home of a stranger.

“Come,” I say. “I will take you.”

We get up together, once again holding hands, and make our way around the table, across the living room and down the hall.

I open the door to the bathroom and turn on the lights for him, wishing that it could be so easy, that someone could turn the lights on my future for me, assuring me that I would get through Lyme disease and become more than a spectator of life.

I wait, knowing that he might finish and be scared to leave the bathroom because of the sound of a party that he can’t remember he has just left, or because he might not remember whose home he is in.

A few minutes pass and he opens the door. He holds his hands out to me, indicating a question.

I turn the faucet on and we wash our hands together in the running water. I take the towel and hand it to him, then dry his hands for him. We venture back to the party, where we sit on the edges of it, quiet and together, observing.