What am I doing here?
I was standing in a group of high school juniors at the University of Wisconsin-Eau Claire watching a demonstration in the school’s cosmetology program, one of many stops on the tour that day. If I went to college, I wasn’t going here, and I was probably going for writing, so this was a waste of time.
“Wanna get out of here?” I whispered to a couple of girls from my class. They looked as bored as I felt. Plus, watching the demo reminded me too much of my mother. They nodded and we stealthily snuck away without being noticed. One asked if we’d get into trouble.
“You’re with me. You’ll be fine,” I said as we walked into the sunshine that May day. I had no idea if we’d be in trouble, but, after watching my mother die the month before, a teacher’s reprimand paled in comparison. I was cool on the outside, but inside I was lost and torn apart, panicked. I suppose that’s what happens when you’re forced to stare your future in the face.
Until that day, I hadn’t thought much about the future. I’d been living day-to-day, in the moment, with most days being dependent on my mother’s mood. Alzheimer’s does that.
I was 13 when she was diagnosed with early-onset Alzheimer’s disease. She was 49. Before the diagnosis, I had plans. My parents, my mother specifically, drilled into my head that I’d be the first person in our family to go to college. She’d never gone and had wanted desperately to be a hairstylist. College was a big deal. Due to this brainwashing, I planned to attend college, then I would write books, screenplays, everything.
When we received my mother’s diagnosis it was difficult to think about anything other than the inevitable — that she would likely die before I graduated college. And perhaps worse, that I’d have her fate. Back in the 1990s, the little research I could find about early-onset basically doomed all offspring to the same unmerciful death. This future hung over me like a black cloak, blinding me from seeing anything beyond it.
Over the next four years I watched my mother forget things slowly, and then all at once. By the time I was 15 she couldn’t apply lipstick, let alone remember me. Confined to the house, most days she would just pace and cry. Sometimes in the middle of the night she found her way upstairs and would whistle a lullaby outside my bedroom door. She couldn’t remember me, but she remembered that lullaby.
Though I knew her death was unavoidable, I still wasn’t prepared. I’d convinced myself that it would happen when I was in college, not before I attended my junior prom, graduated high school or even picked the college I would attend. At this point, I didn’t know if I wanted to bother with college. The only reason I even considered it was for her. The proud look on her face emblazoned in my memory when she told me so many times, “You’ll be the first one of us to go. You’re going to be something, honey.”
And I did go. I went through the motions of what was expected because, after she died, I was too numb to think for myself. And, really, once she’d forgotten me, I just walked through life like a living, breathing zombie, which I decided was probably good practice for the future should I end up like her. I got myself a boyfriend. I was a cheerleader and a member of the dance team. I sang in the show choir. I played every part of “normal” so no one would find out my secret — that my mother didn’t know me and was going to die.
While I projected a “traditional” normal to the outside world, I learned to create a new normal in my private life. I still wanted to believe my mother was proud of me even if she didn’t know me or what was going on around her. I read her and my father my short stories while she stared blankly at a wall or paced the room whistling. I asked her what she thought of my outfits before dates. I decided a whistle meant it was good, silence meant I should try again. I played her favorite records and would pace with her in unison to the beat because I knew music made her happy. It wasn’t a traditional normal, but it was our normal. And I was fortunate that she taught me a lot before Alzheimer’s stole her away.
Even though I wasn’t allowed to wear makeup until junior high, my mother started me out young, letting me shape her eyebrows, paint her fingernails, and apply blush to her cheeks. “Just the apples, honey. Not too much, you don’t want mommy looking like a harlot,” she would say. It was a tough day when I realized that our roles had reversed.
I walked by my parents’ bathroom and when I glanced in, noticed my mother had put blush over her entire face. Her lucidity was in and out at this stage of her disease so this wasn’t a surprise. “Oh Mom, remember? You don’t want to look like a harlot,” I said with a giggle, and took a washcloth to clean her face. She nodded when I asked if she wanted me to reapply her makeup.
“This is just like old times, huh?” I said, applying her foundation. Then she put her hands on either side of my face.
“You know I love you, don’t you?” she asked. “You know you’re going to be OK? You’re a good girl.”
As I looked into her eyes I saw the mother of my pre-adolescence, and said, “Of course I know you love me. You’re my mom.” I felt hopeful for the first time in a long time, but the lucidity faded as quickly as it appeared. It was the last time I would get a glimmer of my mother’s former self, and shortly after this day she wouldn’t remember me.
More than two decades later, I sometimes still feel the effects of her Alzheimer’s like it happened yesterday. Days come where I’m still that lost, panicked teenager looking at colleges and wanting nothing more than to ask my mother for advice. And whenever I forget something, concern for my brain health enters my mind. What gets me through is knowing that — even if Alzheimer’s takes me — I’ve had a pretty good life. It took a long time to see that. I’m convinced that if you can live through Alzheimer’s and come out on the other side, you can live through anything.