Role Model Arthritis May Have Robbed Her Of Many Physical Abilities, But For This Mother, Strength Was The One Skill The Disease Couldn’t Steal

My mother taught me how to tie my shoes, how to dress myself, and how to untangle the knots in my unruly hair.

She taught me never to chew food with my mouth open, never to cross the street without looking both ways, and never to say the word cripple.

I was about 4 when I realized my mother was different. We were in a department store dressing room - Mom, my older sister and me. Mom was trying on slacks. My sister was helping her.

A young girl lay on the floor of the adjoining room, staring at us from beneath the partial dressing-room wall. She pointed at my mom’s heavy leg braces and laughed.

I promptly stepped on her fingers.

My mother, now 60, was diagnosed with juvenile arthritis at the age of 18. The first few years, her illness was barely discernible. She led a largely normal life punctuated by days of intense stiffness and pain. She graduated from college, married my father and had my sister and me.

As the years passed, her mirror reflected the disease’s relentless course. Her once shapely legs withered into bent sticks. The bones in her chin wasted away. Her fingers folded into the palms of her hands. She endured eight surgeries in 20 years, leaving her knees and hips a mixture of metal and plastic.

These days, even her eyes won’t open all the way - the victim of a barely-pronounceable syndrome that weakens the muscles in her eyelids.

Through it all, she’s never stopped trying to live as normal a life as possible.

Mom learned to compensate for the things her body refused to do. She couldn’t ride bikes or play kickball with my sister and me. But she listened patiently as we recounted the trivial details of our school day - from what we ate for lunch to who pulled our hair at recess.

She could be lying on her bed at the back of our house and know we’d eaten far too many Oreo cookies during our ritual after-school “Batman” viewing.

She rarely - if ever - missed a tennis match or choir concert. She even spent a year as room mother for my fifth-grade class.

Mom learned to ignore the often thoughtless treatment she received from others. “Do you think your mother would like a deep pink or rosier shade of blush?” a makeup clerk once asked me. I was a teenager at the time. “Ask her,” I shot back. “Her wheelchair doesn’t mean she’s deaf.”

My mother gave me a silencing glance and chose a color.

During my high school years, my parents divorced. Mom battled depression brought on by years of fighting a disease that wouldn’t stop trying to take her down. At the same time, she and I danced the usual mother/teenaged-daughter two-step - but with a twist.

The line between mother and daughter had blurred, confusing us both. I helped her dress in the morning and made most of the meals. And SHE wanted to tell ME I had to be home by midnight?

We survived. I went away to college. Mom rallied.

She learned all over again how to drive. She did volunteer work for the American Red Cross and a disability advocacy group. With the help of specialized equipment - sock donners, graspers, curved and extended brushes and combs - she adapted to living alone.

Her independence was not without incident. She fell down in parking lots, tripped out of elevators and stumbled in her apartment. She broke her nose, suffered a concussion, fractured several fingers and toes. Each accident took her down, but she kept getting up.

Four years ago, I moved from my hometown of Independence, Mo., to Spokane. Burning up long-distance dollars, I continued to recount for Mom the infinite saga of my days - my editors, my stories, my friends, my husband. As always, she listened. She countered with stories about doctor and medication troubles, noisy neighbors, her adventures with my grandma.

Last year, a series of hospital stays left her weakened and depressed. She stopped driving. She rarely left her apartment. Her doctors, as well as my sister and I, worried that she was giving up.

We up and moved her to Spokane.

Once again, Mom rallied.

She’s lost some in the years of struggle, but she still lives on her own in a duplex just blocks from my house. She’s not driving - yet, she tells me - but she’s learned to use public transportation with flair. She hired a woman to come in and cook her meals and give her a bath.

Her life is very simple, very ordered. Nothing is ever out of place. As a teenager, she dreamed of being an artist. Now, she puts her creative energies into her sock drawer and closet; her pants and blouses are lined up like the colors of an artist’s palette.

It may take her an hour to get dressed or clean up the grapefruit juice she slopped on the floor. She may gripe, but she does it.

We still have the usual mother-daughter struggles. She never fails to tell me when my hair needs a trim, the color I’m wearing isn’t flattering or that I need to “put on a little more blush.” I never fail to cringe and mutter when she does.

The other day, in much the same tone she might ask me to take out her trash, Mom asked me if I’d go with her to see a neurosurgeon. Her own doctor is worried about the vertebrae in her neck that are wearing thin. Eventually, the bones could wear away to nothing, leaving her skull resting on her spinal cord.

If that happens, she’d be paralyzed.

Days later, the neurosurgeon gently explained to us there was little he could do. If the worst happens, he could operate. But he wasn’t sure her crumbling bones would cooperate.

I cried. Mom didn’t shed a tear. “Just one more thing,” she said quietly as I drove her home.

My mother taught me far more than the basics of life. She taught me independence and determination. On almost a daily basis, she reminds me to be thankful for what I have. Above all, mom taught both her daughters compassion. This lesson, at least in part, inspired me to be a journalist and my sister to be a doctor.

My husband and I are hoping to have a child. I told my mom I’d like to have a girl. Girls need strong women around them, something I certainly have. My grandma. My sister. My best friends. “And you, Mom.”

“Me?” she said. “I never thought of myself as strong.”

, DataTimes ILLUSTRATION: Photo

MEMO: Kristina Johnson, 30, covers Spokane City Hall for The SpokesmanReview.