The Times Picayune

Published: April 1, 2000

My mother cried the first time I had to help her bathe.

“I didn’t want you to have to see me like this,” she said, holding up a towel that was too small to completely cover the front of her body, her skin hanging from frail bones.

It had been 25 years since I’d seen my mother undressed, since I was a preschooler and she’d allowed me to share her bubble baths. Then, I was too busy playing with my bath toys to pay attention to her nakedness. Now, I was an adult, a guest in her New Jersey home, and I tried to avoid noticing her body again.

“It’s no big deal, Mom,” I said coolly, even as I felt a burning in my eyes and throat as I helped her walk across the bathroom. “I’m not even looking at you.”

My mother was officially diagnosed with multiple sclerosis only three years ago, but we’d all seen signs of the disease much earlier. For years, she’d been unsteady on her feet. During vacations to the Jersey shore, she lagged far behind during walks on the boardwalk. Either my younger sister or I would match her slow pace and offer the arm she needed to hold. My father, filled with energy, would walk ahead, buying French fries with vinegar or sugar-topped funnel cakes, then run back to my mother to share his loot.

But although we all knew something was not quite right with Mom, the words “multiple sclerosis” hit us hard. My father refused to believe that my mother, who had devoted herself to caring for him and his children, was too weak now to even care for herself. He promised my sister and me that she would get better. It was just a matter of time, he said; those doctors are wrong. I listened and didn’t argue. My sister cried, and I tried to comfort her.

The role I’ve assigned myself in this family drama is “the strong one.” I save my tears for when I’m alone. When doctors told my mother she would have to give herself daily injections, she almost broke down, horrified at the idea. Inside, I was as upset as she was. Outside, I was matter-of- fact. “Look, Mom, it’s no big deal,” I said, taking a needle and jabbing it into the skin below my inner elbow. Blood spurted out and I was left with a bruise, but I didn’t tell her how much it had hurt.

Recently, my sister, whose home is a six-hour drive from my parents’ house, said she worried that the young woman who cares for our mother will replace us in Mom’s heart. After all, it is Gina, a stranger until a year ago, who shares our mother’s daily life. They spend hours together, bickering and bonding. Gina, who is 22, is different from me. She wants my mother’s advice on everything and she’s eager to share stories about her romantic life. I’ve always been shy about certain things, and I envy Gina’s openness and the relationship she has with my mother. I told my sister her fears were unreasonable. But I’m just as scared.

I wonder if I’m doing the right thing. My mother’s diagnosis came soon after I’d moved halfway across the country. At age 27, I’d finally landed my first real job in journalism. I love my work and New Orleans, my new home. I’ve been known as “adventurous” in my family since my first day of kindergarten, when I’d hopped on the bus and looked straight ahead, ignoring my mother and aunts crying at the curbside. Moving to New Orleans was the start of another adventure and I didn’t want to give it up. I still don’t, as I flourish in the world of home, friends and career that I’ve made for myself.

It hasn’t been easy. I never know what condition my mother will be in when I visit home. MS is a fickle disease, and some months are better than others. It still shocks me when I call at midday and hear the fatigue in my mother’s voice. I hear the same exhaustion in my father when he tells me about another round of doctor’s appointments, followed by a late night at the office for him. He doesn’t complain.

My mother wants me to move closer to home. She is proud of my accomplishments. I send her copies of my work, my name printed below the headline for all to see, and she reads as much of the articles as she can before her eyes get tired. She brags about her daughter, the journalist, to whomever will listen. On visits home, I find I’m known to everyone from the clerk at the coffee shop to the nurse at the doctor’s office.

But more than anything she wants me back in New Jersey. I check in once, sometimes twice a day. I spend most of my yearly two-week vacations at my parents’ home. But I can’t do enough to make up for not being there. I wasn’t there when my mother fell and broke her arm, when she could only lie helpless on the floor for hours. I wasn’t there when a handful of her teeth fell out without warning, a nightmare that almost destroyed her. Her setbacks become my own, as each forces me to face the guilt and doubt I’ve tried to bury.

I hide my pain behind jokes, relishing every time I can make my mother laugh. I exaggerate my weaknesses to make her appear stronger. When I push my mother’s wheelchair through the grocery store, she knows to avoid the boxes that fall when I accidentally nudge a display. With her lap filled with cans and bags, she’ll look helplessly at the counter girl when I wheel her to the check-out line. “Do you see how she treats me? Do you see what I have to go through?” she’ll ask anyone who will listen. But she smiles a lot, too. She’s proud that her daughter is taking care of her, even if her daughter doesn’t feel as though she’s doing a very good job.

Last Christmas, I was home again and I had to prepare the holiday meal for the first time. I wasn’t comfortable in my new role. Mom talked me through the turkey preparation process. I thought it had all gone well until I took the cooked bird out of the oven. I’d put the turkey in the pan upside down so the bottom was nicely browned while the top was white and rubbery. In my defense, let me say the flour-coated bag the turkey was sitting in made it hard to see what I was doing. My mother still laughs aloud when she tells that story, and I’ll do it wrong again if I have to.

After that first bath, I knelt before my mother and rubbed cream into her feet. She says the massaging soothes the pins-and-needles-like pain that plague her constantly. Then I took a pair of white socks and gathered the cotton around my hands so I could slip them over her feet. As I did that, my mother pointed her toes and used them to peck at my arms and face. She made kissing sounds with her lips. I looked up at her, confused and annoyed.

“You always used to do that to me when you were little,” she said. “You were such a pain to get dressed.”

I nodded and smiled. But I was weeping inside.

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