The story of Kelly
Watching the Green Bay Packers on TV is a weekly ritual in my home. But a family tradition was interrupted—and my life after 24 years as a speech-language pathologist drastically altered—on Dec. 20, 2015, while the Packers played the Raiders in Oakland.
Late in the game, as my teenage sons, Luke and Neil, cleaned up after dinner, I lost my ability to speak. I gestured to Luke, and the look on his face horrified me. He began to panic, and so did I. “Why are no words coming out of your mouth, Mom?”
By that time, I had no feeling on the right side of my face, and I realized I was suffering a stroke. “Call 9-1-1!” I blurted.
Thus began my journey with moyamoya, a rare progressive cerebrovascular disorder that takes its name from the Japanese term meaning “puffs of smoke.” It’s caused by blocked arteries at the base of the brain’s basal ganglia, and the tangle of tiny vessels that form to compensate for the blockage resembles puffs of smoke, medical experts say.
After six months of MRIs, MRAs, CT scans, and brain angiograms, I had a diagnosis. Until then, every little tingling in my lips, difficulty with word retrieval, and slightly slurred words convinced me I was experiencing another stroke.
Finally, in May 2016, my neuroendovascular surgeon determined that moyamoya caused narrowing of my left internal carotid artery—slowing blood flow to my brain, depriving it of oxygen and triggering the stroke.
Two months later, I had extracranial-intracranial bypass surgery, allowing my healthy blood vessels to bypass blockage in a narrowed artery and providing additional blood to my brain. After four days in the neurological intensive-care unit at University of Wisconsin Hospital, I suffered a second stroke.
While asking my husband for a sugar substitute to sprinkle on strawberries, I experienced dysarthric speech and aphasia. Evaluations from occupational and physical therapists and SLPs determined the next steps.
The speech evaluation hit me hard, as I experienced what my students do when I ask for answers they don’t know, words they can’t retrieve and sounds they can’t pronounce.
After five more days in the neurological ICU, I was discharged for home recovery, characterized by severe headaches and energy loss. My full recovery took three months. Moyamoya has no cure, and I have regular exams to monitor the disease.
Since returning to work in August 2016, I have an emphatic new understanding of my students’ needs and struggles. I know how they feel when they tell me—sometimes through tears—that, “My tongue just won’t move in that direction.”
Two years ago, I didn’t know moyamoya existed. Today, it is part of my life and helps me experience the thoughts, challenges and emotions of my students on an entirely higher and much more personal level. For that, I’m grateful!