The following blog post was written by Executive Director of the MGA, Allison Foss.
Sometime last fall, I was in my kitchen fixing dinner after a routine plasmapheresis treatment when I saw the message light blinking on the MGA phone system on my computer. I pressed play and was greeted with the sweetest voice of what I thought I heard them say, “My name is Joan Stackhouse.” I replayed the message once the hum of the microwave stopped and sure enough, it was Joan Stackhouse, otherwise known as the founder of our 62-year-old organization! I about dropped my dinner.
We had not had contact with Joan for many years as far as I was aware. Diagnosed with myasthenia gravis some 63ish years ago while doing mission work in Africa, Joan and her husband, Reverend William (Bill) Stackhouse, relocated to Kansas City to lead Southminster Presbyterian Church around the same time. Once they landed in Kansas City with two small children in tow and a diagnosis of a rare disease, they recognized they were going to need a little bit more support to navigate these new waters. Thus, the Myasthenia Gravis Association was born to support patients, their families, and friends as they too began to wander into the unknown.
Although the Stackhouse family left Kansas City five or so years later to continue their work within the church, they knew the organization was in good hands, providing the same quality of services as it had been during their leadership.
Nonetheless, touch was lost between Joan and the MGA, so when I heard that voice several months ago on the phone there was one thing that struck me—I have to meet this family! A few detours along the way as a result of COVID-19, I arrived last week at their nursing home in Pasadena, CA, only to find Joan sitting sweetly in her wheelchair at the entrance waiting for me. It was surreal that this moment was occurring.
In chatting with Joan over the next several hours, I learned so many amazing things about her. When Joan’s family transitioned to their chapter in the Pasadena Retirement Community, she started teaching art classes to other residents. Many of her pieces of art hang in the nursing home and they are beautiful. They are full of tiny little details and represent stories about the landscapes. As I watched her cut open a fresh avocado from her son’s tree to share with me using a teal knife it made me smile as teal is the official color of MG awareness. I later learned teal is Joan’s favorite color and that was long before she knew about the association. Joan and Bill have touched lives across the globe and it was obvious as I was there watching their interactions with other residents and staff, the kind of life they have lived. Nearly everyone we encountered knew who I was before Joan even introduced me as Joan had shared with them the purpose of my visit.
MG can rob you of many things in life, but I’ll tell you what; one thing it doesn’t rob you of is making connections with some of the most amazing gems on this planet. Late last year, we lead our annual campaign on the words, “let your light shine,” and as I was flying home, I couldn’t help but think how much the Stackhouse family has let their lights shine. In the face of adversity, they’ve embraced it and challenged themselves to be better and make a difference.
I’ll leave you with this: Joan said to me, “I was determined if I was going to do anything, it was going to be first-class because we were not going to have a flimsy organization.” I will remember that for as long as I live and work to improve awareness of myasthenia gravis. Never give up!
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