"You walk like a duck," my husband said as we walked across the Target parking lot. "That's right, but I'm walking," I replied in a determined, almost defiant voice.
The day was cool, windy, damp and cloudy. It was my first day out of the house after recovering from another rheumatoid arthritis (RA) flare-up, which had kept me indoors for a week and a half. Jim, my husband, had offered to use the handicap sticker, the one he had insisted I get six years ago. But I emphatically stated that I would walk the distance from the regular parking spots to the store. The walk would be good for me.
I've lived with the disease for 10 years now. At first there were sore feet and shoes that wouldn't fit and stiff, achy fingers that needed coaxing. I ignored them. After observing how my parents dealt with arthritis—my dad had severe osteoarthritis and my mom had rheumatoid arthritis—I believed I could keep moving despite the condition, and handle my arthritis with dignity.
The pain started with my feet, but I didn't think much of it. I was on my feet a lot, so it seemed natural that they would start hurting. But on a Saturday morning in May 1998 I began to feel severe pain. It was my youngest son's prom day, and I woke up in the middle of the night with pain in my shoulders, wrists, hands and feet. It was so bad that I couldn't even lie in bed and spent the rest of my night sitting in the recliner. (An action I have frequently repeated since then.) On the drive to the doctor's office later that day, reality hit. I knew I had RA, just like my mother. Sure enough, I was officially diagnosed with the disease two months later. I expressed tears of anger, frustration and grief. This disease was going to be a challenge.
In 2001 my knees hurt so badly that I could barely walk. I took sick leave from my job as a third grade teacher and never returned. My arthritis had forced me into early retirement. Since then I've been able to enjoy some travel, writing, reading, exercising and volunteering. But throughout it all, there's pain and constant fatigue.
When RA patients complain about their illness, few understand or acknowledge their suffering. Every adult has experienced a painful elbow, knee, finger, or some other joint that interferes with physical activities. But people can be dismissive of our chronic problems because RA isn't life-threatening and may seem less serious than some other diseases. Those with rheumatoid arthritis, especially those with severe symptoms, are often silent and solitary sufferers.
Three years ago my oldest brother, who has both osteoporosis and osteoarthritis, shared his collection of old photos at a family reunion. One photo caught our eye. It was of my father hanging clothes on the outdoor clothesline.
"Grandpa hung up the laundry?" my niece Joan asked with surprise. "Of course! Your granddad was liberated long before it became popular," my younger sister Monica replied emphatically.
That wasn't how I remember it, I thought at the time. In the rural communities of the '50s and early '60s of my youth, the roles for men and women were clearly set. My father didn't hang up the laundry because he was "liberated"; he did so because he understood my mother's pain. Because he had empathy for her suffering, he knew when he needed to cross the typical male/female role boundaries.
I turned 60 in March, about the same age as my father when my brother took that picture. I think about my father helping my mother do laundry. Lately I have wondered, when my father suffered from osteoarthritis in the end years of his life, did my mother understand his pain? There were no male roles for her to assume to prove she did. There was only my subjective evaluation of how they treated each other at the end of their lives.
I've observed how many older couples deal with chronic illnesses and the diseases of aging. Trapped in the pain of physical deterioration, it's difficult for them to express and show compassion for each other's suffering. If you're consumed with your own suffering, isn't it understandable not to acknowledge or care about another's?
There are days when I experience little or no pain, only stiffness. Stiff is good, I think. But I never know when another flare-up will again disrupt my life. People sometimes ask me how I'm doing. Remembering my mother's often-used phrase, I reply simply, "I'm fine." People are either talkers or listeners. I'm a listener. It's easier. Besides, how can I really describe how I feel and how RA has affected me?
I've learned a lot about my illness in 10 years. RA has become one of my personal definers, but I know it's in my control to keep its pain from possessing me. My pain has taught me that if I concentrate on it, it will consume me. I will become depressed, angry and self-pitying. I will not notice when others express their suffering—my husband, children, family, friends, and even strangers. I have also learned to respect those who have spent all or nearly all their adult lives with the disease. I admire the courage of the children who suffer from juvenile arthritis. They have a special kind of strength.
Perhaps old age is going to be a long, hard haul. Nevertheless, I believe I may have found the secret of growing old gracefully. It's not letting illness and pain control us so that we stop caring about others and discredit their suffering. My life's goal is to accept others' pain and suffering as well as my own. In the end, I may still "walk like a duck" or not walk at all, but I'll have done it with grace and dignity.