Maggie and her husband live in Okemos, Michigan.The following is her self written journey with ALS.
Maggie and Stan
By Maggie Miller
My husband, Stan the Man, and I kissed goodbye in the neurologist’s parking lot and walked to our separate cars, still stunned at the possible diagnosis. As we drove back to work, each of us was clinging to the notion that all this would all go away when we met the doctors at the University of Michigan hospital for a second-opinion. (My Green blood churned.) We were determined to forget the news of the morning and eagerly, if not anxiously, buried our thoughts in our students’ lives.
It had been seven months since I first noticed that I slurred the word “counselor” when I would leave my voice mail message at my high school office. It was a “what’s up with that” situation I dismissed as battle fatigue! That summer my sister assumed that my progressively increased slurring was from too many pina coladas (nice job on alcoholic intervention, sis). Stan, who I like to believe lingers on my every word, said nothing. When I returned to school in August to mingle with colleagues, a friend asked if I had dental work done; another, if I had had a stroke. It was like being hit by a two-by-four—something was wrong (duh-ah). I freaked out. Whatever this was, it was out.
After many delightfully-comfortable tests, the doctor at U of M Motor Neuron Disease Center confirmed the diagnosis of bulbar onset ALS and launched into discussions of three-month visits and future losses. It was “an out of body experience” as I received what seemed like reams of hardcopy to read (or shove under my bed--me bad) and met a parade of specialists who would be my clinical team. I don’t remember the ride home or the remainder of that week. I sat on the porch coma like, did not go to work (which was a rarity for me), cried and laughed with friends who stopped by and decided that I would give myself ONE WEEK to grieve this stupid inconvenience. I then returned to work as usual so that my students would not miss a beat in whatever they needed me for.
As the year progressed, we created a dictionary on the white board of our work room. Whatever I tried to say was posted, followed by the translation. It was quite hysterical. “Mouth-breather” became “moth breeder.” “Beth” was “Bef” and “Sara” was “Sawah.” The others are highly kept secrets. I napped on a floor mat (thanks to Sawah and Bef) by my desk during lunch to battle increasing fatigue.
By May I was typing my responses on my computer during student and parent meetings, e-mailing (my least favorite means of communicating) instead of “phone mailing,” relinquishing my stand-up presentations to my wonderfully supportive colleagues and still helping my students deal with their issues and, surprisingly, with my illness. The end of the school year brought the end of my career.
Two years later, I have finally come to terms with this damn disease. I once described the diagnosis as having been given a new skin that at times was so tight I could barely move and at other times so loose that I got lost in the many crevasses and folds. I have grown into it now and, although not stunning in appearance, it is me. I have grieved my major loss—not being able to work with kids—and learned to deal more effectively and realistically with my life as a person with ALS, not a person fighting the disease as if it were Darth Vader. Stan, my pals and I still joke about Big AL(s), which is our way of dealing with what lies ahead or what was left behind.
My life has been one of an idealistic thinker and talker, a story teller, an entertainer, a comedian, a person with a contagious smile and laugh and a good-natured prankster. My second most favorite thing in the whole world, next to working with teenagers, was eating good food while laughing and bantering with friends over great meals and drinks.
Today, I cannot speak, eat, drink, smile, swallow or hold my neck erect without support—but I can still walk, move my arms, drive and hug back! I consider myself fortunate when compared to other ALS patients. I have an outstanding team of caring and compassionate medical professionals at the U of M clinic and an amazing support system stationed around the country.
So life as I knew it has changed. Stan, our families, my pals, including former colleagues and students from as long ago as 30 years, have been tremendously attentive, generous and patient with me. An Okemos High School community service club, All Connecting to Improve Our Neighborhoods, has sponsored three bowl-a-thons in my honor, raising more than $25,000 for ALS research.
I return to the high school often (as if they could keep me away). I have spoken twice a year to the English classes after they read Tuesdays with Morrie. When it snows hard, I still turn my jammies inside out to encourage the snow-day voodoo. E-mails (now my favorite method of communication), visits, help with things I can no longer do and outings bofriendships. ost my spirits. My one-liners take longer to deliver as I type them into my Dynawrite (aka “Paul”), but I am still as feisty as ever. I have become a better listener and more thoughtful responder. I have grown closer to my family and have rekindled
The kindnesses and generosity I have experienced, kudos from my professional organizations, innumerable letters of appreciation and awards I have received are usually shared at memorial services. I am alive to experience them all with my entire heart and soul.
I am the lucky one!