Liza Shaub

Mom wasn’t made to be sick. She refused to stay at home, refused adaptive clothing, and refused to acknowledge when places weren’t accessible. She dawned chunky necklaces and oversized hoops (and when she did I’d say, the bigger the O the bigger the Ho, Mom), which I’m sure she laughed about when I wasn’t looking. She wore furry and frilled tops, and pants with so many buttons they were nearly impossible for a caregiver to configure. But they did it anyway.

She made those caregivers take her to TJ Maxx to buy ballgowns for black-tie weddings, and whatever other fashionable things called her name, even if they came with literal bells and whistles. I’ve never seen a woman wear so many formal outfits from a wheelchair while also dying. Being put together, head to toe, was non-negotiable, even if she was headed to get a pedicure. She would have despised what I wore to class in college: an oversized shirt that drooped past my knees. 

Showing up in the world as an aging pageant queen was her prerogative, and she mastered it, even if a disease was taking over her body. She typed out every detail of the outfit she wanted, down to the lipstick color. If my siblings, the caregivers, or I grabbed the Fushia Fusion instead of the Berry Rumba, she wasted precious energy typing the correction. I wanted to snap, “No one will notice, Mom.”

 But she would.

Mom expected the rest of us to perform alongside her as if it required no effort at all. Early on, when she first lost her ability to walk, she insisted on sitting on her walker, letting us roll her through places backwards, as if she could stand up and walk at any moment. Three years into the disease, she couldn’t move her legs, but she didn’t want others to know that.

Three years is the typical life expectancy after an ALS diagnosis, though my mother added twelve more. Fifteen years of witnessing her fight her body for her children, until she finally decided we’d be okay and she could leave us.

Some people wondered whether it had really been ALS and not another neurodegenerative disease, because no one lives that long with ALS, or so they’d say. But my father remembers February 2004 like it was yesterday. I’m sure Mom arrived at the doctor’s appointment in gold earrings with a matching gold necklace and her iconic gold bangles. 

         After the neurologist delivered the news, calling it Lou Gehrig’s disease, he glanced at the clock and said he had another appointment to scoot off to. Before leaving, he offered one suggestion: buy a wheelchair now with an oxygen tank attachment, because that would save them money in the future. Insurance would only cover one.

The doctor wished them well, and my parents never saw him again. It took years for my mother to succumb to a wheelchair, because where I came from, no prominent socialite used such a vessel for transportation, not even 90 year old grandmothers. Wheelchairs signaled weakness, and we were not weak.          

When she finally accepted that a wheelchair was the only acceptable form of transportation, life became easier in some ways. But the places she loved the most like her friends’ homes rarely had ramps, just muscular family friends willing to hoist her over wide front stoops with huge smiles. We barely make our home more accessible, so why would they?

I dreaded pulling up to these non handicap accessible venues. Mom wanted us to have a united front, smiling while heaving her out of the car to her wheelchair without sounding like we were at the gym. Once she was situated with the right amount of space between her back and the backrest and footplates reattached, the first obstacle stared us down: walkways lined with stepping stones and loose gravel. They were the hardest because every uneven slab poised an opportunity to catch the wheel of the wheelchair and catapult her forward.

Everyone offered to help, but we knew Mom wanted us to do it, not calling attention. She never asked us to stop bending over backwards so she could live life “normally,” so we forged ahead. My father lived with the motto, happy wife, happy life, and it trickled down to me. Happy mom, happy life.

So on went the chunky jewelry, the TJ Maxx runs, and the weekly nail appointments. I can’t imagine my daughters balancing that kind of devotion in the midst of my denial.

Pushing down frustration felt like holding a beach ball underwater. My godmother knew this, and always greeted me with a libation, because she could see deep down how much I was struggling with the constant acting. She’d wave her hands by my eyeballs so they would stop sweating. If she was hosting and couldn’t get to me right away, she’d summon my godsisters to take over and acknowledge my tears.

As I got older, everything we did started to feel unnecessary and harder to justify. Why couldn’t we be at home laughing over home videos of Beau and me running around with diapers on our heads wearing Mom’s bras? Those were the glimmers I desperately wanted. But when Mom didn’t give them, my siblings and I created them, like when we found alternative usages to the ramp in the garage. Once Mom went to bed, my little brother and his friends would signal it was time to meet up in the garage and create some high school ruckus. We threw makeshift skateboarding competitions like the show Jackass. My favorite memory of this was after my rehearsal dinner. We started going down the ramp headfirst, riding it like we were paddling out on surfboards, and then I stopped myself, because hobbling down the aisle the next day really would have irked my mother.  

I stopped acting during the summer between my first and second years of college. It happened after I drove her to the antique store to shop for a chest of drawers and end tables, despite having an already furnished bedroom from the previous tenant’s hand me downs. I didn’t need, or want, mahogany bedside tables, but I knew Mom wanted me to have some, so out of guilt I drove her alone to yet another inaccessible place.

I should have known how the trip would end: with my huffing and puffing just like leaving antique stores did as a little girl. The parking lot was gravel and the aisles were too narrow. After using every ounce of muscle I had to pull her out of the passenger seat and into her wheelchair that never unfolded easily, I finally had her ready, hoping it would bring her joy to discover a timeless, vintage piece for my first apartment. I just wanted her to feel included in the part of my life she couldn’t access. Even if that came as a burden to me.

But we didn’t find joy in faking normalcy this time. Instead, I parked her near the front and rushed through the store alone, without her keen eye to distinguish trash from treasure. We left empty-handed, and I decided that would be my last solo outing with her. I’m fairly certain we drove home with the trunk cocked open and the wheelchair jutting out, because I couldn’t collapse it properly to get the hatch closed. If we were going today, I’d put my foot down and say to Ikea we go, with ramps, elevators, wide aisles, and welcoming staff. We could have laughed at home while I tried to assemble it all and complained that half the screws seemed optional. But I wasn’t ready to let the facade go back then. It’s what I thought Mom wanted.

When the caregivers took over bringing her everywhere, especially to church, I stopped going with her. Wheeling her through the vestibule had become a spectacle, a weekly public display of Mom’s strength. She attended services while enduring kidney stones, which I have to believe she did for her own joy, not for the audience. Conversely, if I have a bad dream the night before, I skip church. Showing up amid the pain isn’t really my style.

But I am not my unshakably strong mother. And my father wasn’t either. Three years and one month after the diagnosis, Dad took off his wedding ring. When you think you’re on a three year timeline, you can go as hard as you can.

But no one accounts for overtime.