Fall of 2023, I noticed a weakening in my legs. Nothing serious, just feeling less strong. I began riding my bike to campus, which is about twelve miles round trip. I was hoping to build back my muscles, to grow stronger. Unfortunately, the strength never returned.
In January of 2024, I fell for the first time as I strode across the new campus library. Blamed it on my new boots that seemed to catch on the carpet. February brought another fall. I continued to exercise in the hopes of counter-acting whatever was happening. In March, my leg locked up as I hopped over a log in the woods while hiking with my sister and the dogs, and I fell and rolled down a small hill. Not graceful at all.
By Spring Break, we were in Chicago with our kids, walking and taking public transit all over the city. I had trouble keeping up, had issues with my left foot turning in, and my legs gave out as we were headed to dinner one evening. By April, my left foot kept dropping, slapping the sidewalk, and I could no longer wear backless shoes without tripping. May began doctors’ appointments, specialists, PT sessions to bring my hips and feet back into alignment. I began walking with hiking poles for balance and even poled around Disney in June on a family trip, that is until the evenings when I was pushed in a wheelchair.
July and August brought more balance issues, and finally, at the end of August, I met with a neurologist in Grand Rapids who tentatively diagnosed me with ALS. “Not a slam dunk diagnosis,” he said, which made me hope for an alternative. I was terrified and heartbroken and barely spoke about the possibility of ALS. I wasn't ready to scare my kids with the news either. And because the doctor encouraged a second opinion, I arranged to go to Mayo Clinic.
On the recommendation of a pain specialist, I began wearing a brace on my left foot to keep it from dropping, and I bought a cart to carry my school supplies. But as I waited for my October Mayo appointment, walking became increasingly difficult and teaching took all my energy.
At the end of October, we flew to Rochester, Minnesota and were treated to mighty Mayo. I met with another neurologist, underwent another EMG, and met with a PT, OT, and nurse who all specialize in ALS. Unfortunately, they confirmed the initial diagnosis, but we returned home with some tips and tools and a lot of information. We’ve been navigating that ever since.
I now wear AFO braces and special shoes pretty constantly to help me walk, and I'm moving short distances with a rollator walker. I can no longer navigate stairs without a lot of help, and I'm using an electric power chair on loan to us from the Susan Mast ALS Foundation for most errands or jaunts away from home. A friend of the family, donated a chair-lift to move me between our main floor and lower level. And I have assistive tools in the bathroom and throughout our house to make living with ALS a touch easier.
Right now, the disease is mainly in my legs, and I'm hopeful that medication, exercise, acupuncture, and other alternative treatments will stall it there and may even reverse it. I'm really just hoping for what we all want: more time. Time to see my children grow up; time with my husband, the love of my life; time with my animals, my family, my friends.
Me before my ALS diagnosis...
I had always been an avid reader, and when I finished Gone with the Wind at twelve-years-old, I was so angry Rhett and Scarlett didn't end up together that I rushed to my bedroom and began my first novel. Unfortunately, in a fit of rationalization and sorting before I left for college, blooming with ambition to be an elementary teacher like my mom, I threw that notebook with that story into the burn barrel in our backyard. I will never reclaim the words of my younger self, but I've worked to add to her words ever since.
I was born in northern Michigan and have spent most of my life there. For 15 years, I lived downstate, pursuing degrees and work and culture. Because of this, my writing takes place all over the state, in fictionalized towns and real. I have an MFA in fiction from Bowling Green State University and a BA in writing from Grand Valley State University.
I taught developmental reading and writing, composition, and creative writing at the college level for 22 years, most recently at Northwestern Michigan College. I have also taught English to non-native speakers at Berlitz Language Center in metro-Detroit. Teaching college courses was a stirring and thrilling day job, and it gave me the freedom to be both a writer and mother. My students challenged me to learn more, to be more, and they inspired me each and every day with the obstacles they overcame just to get to my class.
Along with writing, mothering, and teaching, I loved to travel and be outdoors, especially in the woods. When we decided to move back north, out of the city, my husband and I committed ourselves to traveling so that our kids could see the world is much bigger than northern Michigan.
As an outdoor enthusiast, I hiked and played disc golf; I swam and kayaked; I dug in the earth, replenishing my soul with blossoms and greenery. Currently, my family and I share our lives with four hens, a basset hound, a boxer-catahoula-lab-husky mix, a tabby, and a bearded dragon.