By Michelle Turk, NP
If I knew then what I know now, I would have felt less vulnerable as my body failed me in the most intimate of ways. As a seasoned warrior in the landscape of chronic autoimmune disease, I had prevailed through multiple serious relapses with lupus. But, then, I had a flare that I instinctively knew was significantly different and did not seem related to my prior experiences. Over the course of two days, I had gone from being vibrant, strong and independent to being profoundly weak, frightened and trapped in a body that could no longer easily perform simple tasks such as walking, dressing, bathing, lifting and driving. Even my breathing was affected — laborious with any exertion. The loss of normal functioning was swift and unrelenting without time to prepare emotionally.
As I shuffled to the bathroom holding onto my husband for support, I wondered what the future held. I had no roadmap for guidance, no clear diagnosis and no promises that the muscle weakness in my arms and legs could be reversed. With my lupus flares, I had beaten the odds in the past and knew that the battle with my autoimmune system was worth fighting. It was not simply a battle to regain my physical capabilities, but also a battle with my inner self to accept my circumstances and embrace the life that I still had in me. Visualizing myself on oxygen supplementation confined to a wheelchair, focusing on an uncertain future marked by a sense of loss for the life that I did not have anymore, was not in harmony with the valiant warrior spirit that existed within me.
Intravenous steroids and plasma exchanges (plasmaphoresis) provided a temporary reprieve of my symptoms. Those moments of a brief escape from weakness and disability gave me hope, but with each recurrence of weakness, I knew that my muscles continued to be ravaged by my autoimmune system. I wanted an army on my side, and I found it when I started intravenous immune globulin (IVIG). Gradually, a new life unfolded with each IVIG treatment as I regained my muscle strength. I felt anchored in the knowledge that my disease was controlled. Once again, I was empowered to trust my body. All of my choices were no longer shaped or defined by my disease as they had been before. It was liberating to leave the battle front behind and allow my wounded spirit to heal. Now, each morning I awake and feel a sense of gratefulness as my feet touch the ground. The simple gift of walking is extraordinary and will no longer be taken for granted.
My disease has been the ultimate teacher. I have learned that with perseverance, the language of suffering can be rewritten. The science of medicine can keep you in the battle, walking a fragile line between life and death. But the art and soul of living is up to the patient. Perceptions are powerful and need to be monitored as they shape response to illness. The disease itself cannot always be perfectly controlled, but like the warrior, it is possible to master the art and soul of the battle.