I Have a Disease: I Am Not My Disease

By Norma Cook Everist

A November evening, 1982, while my husband, Burton, and I delivered Thanksgiving baskets in downtown Dubuque, I suddenly felt overwhelmingly fatigued. I became ill and never recovered. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a physiological and neurological disease with no known cause and no known cure, affects hundreds of thousands worldwide.

Joshua Prager’s life changed in a minute when his neck was broken. He chose to respond by continuing to embrace life. To live a full life with a chronic illness is to embrace one’s self, gifts and calling. I have a disease; I am not my disease. Last year I asked myself, “How do I mark the 30th anniversary of living with a chronic illness? With sadness or celebration?” We at Wartburg Theological Seminary, where I have taught for 35 years, held a convocation on, “Living in community with Our Abilities and Disabilities.” Supported and respected by this caring community I have been able to teach, write, and lecture around the world, but not without limitations.

People, encountering someone with a disability and therefore aware of their own vulnerability, may become dismissive or fearful. Fears for themselves, fears for me and about me. Who knows? Is ME/CFS genetic, environmental, viral, or what?

People in this “move-forward” culture want me to be “over” my disease. “You’re looking good. You’re feeling better now, aren’t you?” Instead of saying, “I’ll never be totally better,” I respond, “I’m feeling well enough, thank you.”

I’m well enough to listen carefully to students. I am professor, counselor and mentor. I enjoy seeing graduates in their places of service today. (I’ve visited over 150 congregations across the country.) It’s amazing how they pick up the conversation as though I was listening to them just minutes rather than years ago. To them I’m simply “Norma.” That acceptance of the person who was, who is and who still will be is a gift.

I’m well enough to teach and preach with vitality and passion. I lecture well, but I especially enjoy creating an environment when everyone’s voice comes alive. Then after class, I rest. I rest. I rest.

I’m tired of resting. No, I’m not sleepy. CFS is characterized by un-refreshing rest. I explain it: “You know the sick, weak feeling when you have the flu? You can hardly drag yourself across the room? Picture that for 30 years.”

Each morning, I simply want to give up. I need to convince myself to have the courage to start the day. Depression is also part of ME/CFS. A sense of vocation, in my case, as a Lutheran Christian, faith in a God of grace, unconditional love, frees me for servant-hood in a world in need.

And yet, to be honest, I still struggle with denial, being tempted to think, “If I just tried harder, I wouldn’t be ill. The words of my mother, decades gone, still linger in my head, “Don’t bother people.” But living with a disability I will be a bother. I need assistance. And what I cannot do inconveniences people. Oh, I’ve accomplished much. I became the first tenured woman seminary professor in the American Lutheran Church. I write: I blog; I’ve published over a dozen books on theology, leadership, education, conflict and collaboration. But, I find it difficult to go to the grocery store, to shop at the mall, to be in a noisy restaurant.

I sit to teach, to preach, to administer the sacraments. Concerned that would be a distraction, I have found it is a magnet. As people come forth to receive bread and wine, our eyes meet and we are all strengthened.

Many people living with ME/CFS become homebound, isolated from the world. Turning inward can lead to loss of family. I am blessed with a husband who has lovingly stood by me, who asks, who seeks to understand, and by grown sons and now their families who express pride and compassion.

Daily life requires discipline, structure, and organization. For example, my best time of the day is 5 a.m. I would teach then, but students probably would not come, so I use that time for writing. I have a hard time walking or talking in the evenings. Time with energy is precious, so I measure it carefully. While most people can go over their limits, I simply cannot or will have a relapse for a week or six months.

I cannot exceed my limits — ever — no matter where I am. But “wherever” has included lecturing in Tanzania, Sweden, Canada, Australia, and more. I need to be clear what my needs are. A malfunctioning (screeching) microphone brings on a seizure-like episode. (Not cool when you are a guest speaker.)

The world is not safe if you have a disability. But neither is my backyard with the noise of motorcycles and lawn mowers. The world is less safe for people in places where there is malaria, polio, poverty, war. I think, “They have it much worse; my problems are nothing in comparison.” But suffering is not a competitive sport. Rather, whatever our situation, we are called to work for justice and global well-being.