Life After Diagnosis: A Real and Raw Account of My Life With RA (Part 3) | Arthritis.com

Life After Diagnosis: A Real and Raw Account of My Life With RA (Part 3)

Life After Diagnosis: A Real and Raw Account of My Life With RA (Part 3)

Life

Life After Diagnosis: A Real and Raw Account of My Life With RA (Part 3)

Topics:

By Diane Chamberlain, Best-Selling Author Living With RA

I was mad at myself.

I’d wasted time. In my own defense, I only now had a firm diagnosis of RA and, in hindsight, I can admit I had been operating out of fear and denial—as well as an ignorance of how an autoimmune disease could progress.

By the time I started a new series of medications my wrists had begun to auto-fuse (fuse together) and some of my fingers became misshapen. I tried to avoid handshakes, holding my hands behind my back when meeting someone new. I couldn’t cut a piece of paper, button a shirt, or fold laundry. Most frightening of all, I couldn’t type. Pressing any of my fingers onto the keyboard shot intolerable pain into my hands. Thankfully, I discovered voice recognition software, which was challenging to use, but allowed me to write two books that I otherwise wouldn’t have been able to write. It kept my career—and my income—alive. I even bought a motorized scooter, allowing me to “walk” my dogs, which brought some joy into my life.

Looking back, I’m sure this was a hard time for David as well as for me. He’d married a healthy-seeming woman who shared his love of dancing and hiking. Now he was married to a woman whose physical limitations seemed to be mounting by the day.

“No matter how bad things became for me physically, on a deeper level, I was doing fine. That simple line became my mantra—a thought that centered me, no matter what else was going on with my health.”

Around this time, the church we attended brought in a special speaker, a Buddhist monk named Thich Nhat Hanh, to introduce our congregation to Mindfulness. David and I went to see him and, in the packed sanctuary, we leaned forward to hear his quiet, gently spoken words. Of course, I’d known about “living in the moment,” but as I listened to Thich Nhat Hanh, I felt that concept on a deeper level than ever before.

“Fear keeps us focused on the past or worried about the future,” he said. “Right now, today, we are still alive . . . Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones.”

So simple, those words, and yet they felt fresh, new, and so very comforting to me. I realized that I’d become so focused on my illness and on my daily struggle to write while battling my symptoms, that I’d forgotten to see the beautiful sky or listen to the voices of my loved ones. That evening, my focus began to shift. When a Mindfulness Center opened at our church, I attended each week, letting the simple-but-not-easy practice of Mindfulness reinforce itself inside me . . . which led to yet another revelation, another gift from the universe that came in an unexpected form.

I was running errands when an oldie came on the radio, “Signs,” by the Five Man Electrical Band. The song is about a man lamenting about “Keep Out” type signs he encountered as he walked around his city. Then he spotted a church with an “Everybody’s Welcome” sign out front and he went inside. When the offering plate was passed, he had no money to contribute so he wrote his own sign as an offering: Thank you, Lord, for thinking about me; I’m alive and doing fine.

In bed that night, that line of the song filled my head. The words had new meaning to me, meaning I felt deep in my bones: no matter how bad things became for me physically, on a deeper level, I was doing fine. That simple line became my mantra—a thought that centered me, no matter what else was going on with my health. It still centers me today, many years later.

It wasn’t until biologic medications became available that I finally got some genuine relief. Though the pain and fatigue lessened to a great degree, the damage to my left foot, wrists, and several fingers was unfortunately permanent. I knew I’d never be able to dance or hike again, but for the first time in years I could type without pain and that felt like an extraordinary gift.

My marriage, though, was suffering. The things that had drawn us together—our dance lessons, our Volksmarches, and our hikes—were all in the past. The emotional toll those changes took on us began to chip away at our relationship. It was no longer the fun-filled, joyous union it had been, and our marriage didn’t seem to have the foundation it needed to weather these new storms. We tried, though. We hung in there a few more years, perhaps turning a blind eye to the problems for a long time before we gave in to the fact that our marriage was no longer working for either of us. Finally, we decided to part while still remaining friends. It was hard for both of us to admit we were ending our second marriages, and I think it was tough on my stepdaughters, especially the youngest. I loved all three of those amazing young women and worried about losing my relationship with them . . . which is probably why I bought a house only a mile away.

My new home felt right to me from the moment I stepped inside. I bought some furniture, set up my office, and planted flowers in the window boxes. Then, taking a deep breath for courage, I began the next chapter of my life: 50-year-old woman with rheumatoid arthritis enters the dating world.