It was a bright and sunny Monday morning when I had the chance to sit down with two women, both living with myasthenia gravis in the Missouri area. Myasthenia however, was not the only thing these two had in common. To think, such a rare disorder, which, often comes with bouts of loneliness, revealed itself to this duo in the exact same community…. what are the chances?
I had the pleasure of speaking with Carol Hunt and Pam Stucker for over an hour, swapping MG stories and learning about the unique bond they share. Although totally different journeys, Carol and Pam exemplify the true meaning of what it means to be a snowflake; different experiences yet a shared common ground that only few people truly understand.
It was the spring of 1981 when Pam was attempting to blow up balloons for a party. After a balloon here and a balloon there, Pam started losing the ability to pucker her lips and could no longer continue blowing. Perhaps it was her voice waxing and waning that really struck a chord with Pam’s sister-in-law, recalling that she had a cousin who had a wife with this condition called myasthenia gravis. Pam took this information to her family ENT, however; her physician was not as convinced of this self-diagnosis as she was. Nevertheless, Pam advocated to see a neurologist and by the early evening, the mom of two was diagnosed with myasthenia gravis.
Since that day, Pam has had her fair share of treatments, crises, and hospital stays. In the midst of these health obstacles, Pam worked as a paraprofessional for 22 years, supporting children with special needs. Today, Pam is retired and receives Soliris treatments which have proven to be effective in managing her MG.
Carol’s journey to MG was slightly different. It was around the time Carol and her husband celebrated their 50th wedding anniversary when she noticed a slightly droopy eyelid, nothing major. Although unable to pinpoint when symptoms really worsened, it was a combination of stress, a virus of some sorts, and eye irritation after petting her neighbor’s cat that spurred Carol to make an appointment with her ophthalmologist. She was prescribed some medicine for the eye inflammation but the droopiness never improved. At this point Carol’s eye was drooping significantly and she was also struggling with double vision. It was then that she turned to her primary care who ended up referring her to a neurologist. The neurologist ordered blood work and a couple of weeks later, which felt like an eternity, Carol was diagnosed with myasthenia.
Carol later recalls other symptoms that caused her a tremendous amount of problems, so much so that it was affecting her work as a teacher. Carol suffered from severe light sensitivity, and went as far as removing the fluorescent lights in her classroom because these symptoms were so debilitating.
With the combination of Mestinon and prednisone, Carol rarely has any more eye drooping, double vision, or light sensitivity. Now retired, Carol is considered to be in medical remission and is incredibly grateful for the minimal symptoms she experiences today.
You might be wondering, what do these two stories have anything to do with each other? Remember, Pam and Carol were both teachers, but what makes their relationship so unique is that they taught at the same school, at the same time. They even shared the same students and lunch break together, and their sons were later friends toward the end of their senior year. It was not until years later that a mutual friend, Rita, made the connection that both these women were diagnosed with the same, rare condition.
How is it, that two women from the same community share the same diagnosis but have such different experiences? That's the funny thing about MG, and maybe one of the biggest takeaways both Pam and Carol want the community to know about this peculiar disorder. I asked each of them individually what they hope others learn during myasthenia awareness month and their answers coincide with their own myasthenia gravis experience. Pam emphasized the importance of self-advocating, a lesson she learned at the very beginning of her MG diagnosis. She stated with enthusiasm, “If you have a question, find out the answer,” and stressed utilizing the multitude of resources that are now out there for myasthenia gravis patients. Carol focused on the mental aspect of living with myasthenia gravis. Although a physically debilitating disease, Carol points out that adjusting to this diagnosis can take time and leaning on people that have this disease is helpful. That’s exactly what Carol did. Carol was a of the founder of one of our support groups, Eastsiders Lunch Bunch. She stated it was therapeutic for her to find people who also had this disease and to talk to others about their experiences, no matter how different or similar they were to hers.
My conversation with Carol and Pam was the highlight of my week and a reiteration of the importance of MG awareness. I hope that those who are recently diagnosed have the courage to share their experiences, because you never know what the person next to you is going through…maybe even the same diagnosis.
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