She didn't want the audience to think she was unfriendly or unhappy, so she wrote them all a letter to explain.
“Smiling and talking are two of the most difficult things for my facial muscles to do, and the most fatiguing,” she wrote. “My non-smiling face does not mean I'm not thrilled to see you! But I'm conserving my facial muscles for preaching!”
Every smile costs the Rev. Kay Northcutt a muscle movement she can't afford to make very often.
So when speaking at a nationwide gathering of Unitarian pastors last year, Northcutt emailed the group to explain that she has myasthenia gravis, a disease that severely limits the amount of muscle strength she has each day.
Myasthenia gravis is a chronic autoimmune neuromuscular disease. It is caused by a defect in how nerve impulses are transmitted to muscles. Normally, when nerve impulses travel down the nerve to tell the muscle to move, the nerve endings release a neurotransmitter called acetylcholine, according to the National Institute of Neurological Disorders and Stroke.
Acetylcholine then travels through the body and binds to acetylcholine receptors, which then are supposed to activate and generate a muscle contraction, according to the institute.
But with myasthenia gravis, the body's immune system produces antibodies — which usually are produced to ward off intruders in the body — that block the receptors for acetylcholine. This means the nerves cannot communicate to the muscles to contract or move.
And the more attempts a nerve makes to communicate with a muscle, the more exhausted a person with myasthenia gravis becomes.
Northcutt's symptoms started when she was a homiletics professor, teaching the art of preaching at Phillips Theological Seminary in Tulsa. During class, Northcutt's left eye would start to droop. By the end of class, she would be holding her eyelid up.
This is a common symptom of myasthenia gravis.
Another symptom is blurred or double vision because of weakness of the muscles that control eye movements. Northcutt would see double vision vertically, meaning things would be stacked on top of each other.
People with myasthenia gravis also can have difficulty swallowing. Northcutt dropped to 113 pounds because she could not find the muscle strength to organize a swallow. Northcutt felt like her muscles were being peeled away from her bones.
“You just start to lose control,” she said.
As with many rare diseases, a diagnosis is often a hard-earned achievement. In 2008, after 18 months of doctors' visits and a trip to the Mayo Clinic in Minnesota, Northcutt was diagnosed with myasthenia gravis.
Last year, she went through nine rounds of chemotherapy. She still receives one treatment every six months.
Northcutt has gotten to know other women with myasthenia gravis, like Jeanmarie Carper, of Edmond.
Carper was diagnosed with myasthenia gravis at age 25. Myasthenia gravis usually is found in women younger than 40 and men older than 60. It is estimated that somewhere between five and 14 people per 100,000 have myasthenia gravis.
There is no cure for myasthenia gravis, but doctors can generally help patients get the disease under control.
A dangerous crisis
Carper has had the disease for 28 years and considers her disease stable.
She is aware of how lucky she is to be stable, having experienced one of the scarier aspects of myasthenia gravis. Some people with the disease go through what's known as a myasthenic crisis.
This occurs when the muscles that control breathing weaken to the point that someone with myasthenia gravis can no longer breathe on his or her own.
About 13 years ago, Carper went to the emergency room with symptoms of pneumonia. A doctor decided to keep her overnight. As the night went on, Carper couldn't communicate to medical staff. She had grown weaker and was unable to talk or open her eyes.
“Later on that evening, I went into respiratory failure,” Carper said. “I guess the lady in the bed next to me, I don't know if she hit the (call) button, but thank goodness somebody realized I had gone into failure, and they got me rushed down to intensive care.”
Carper was on life support and spent the next five days on a ventilator. When the crisis occurred, Carper had been diagnosed with myasthenia gravis for 15 years.
One of the main concerns for people with rare diseases like myasthenia gravis is the lack of medical knowledge.
For the three weeks she was in the hospital, Carper had about 30 nurses. Only about three of them had heard of her disease.
As Northcutt and Carper sit in Northcutt's living room, talking about their disease and what they've experienced, neither complains. Rather, they repeatedly say they just want people to understand the disease, especially people who might be undiagnosed with myasthenia gravis.
Carper has lived most of her adult life with the disease. She has two adult children and a husband who was 22 when the 25-year-old woman he had only been dating a few weeks told him she had a chronic and incurable disease.
The only tool Carper had to explain myasthenia gravis to Jeff was a pamphlet about the disease. And he stayed with her.
“A support system when you have a chronic disease is essential,” Carper said. “I have no idea where I would be today if it weren't for my husband.”
Meanwhile, Northcutt is newer to the disease. She hasn't yet reached her “new normal,” but she's trying.
Northcutt is leaned back in a recliner, resting her muscles. The hourlong interview will have to end soon. Northcutt talks about how she has spent a lot of time, tired and in bed.
“I'm just so relieved to be alive,” she says, with a wide, appreciative grin that spreads across her face.
“That's also exciting.”