Author: Donna Whittaker
Titled: "What Happened to This First Grader's Smile in Fifth Grade?"
First Grade
September 1957
On the hot days of summer at age 10, I dragged behind my mother, especially walking through the barnyard and half a mile back into the cow pasture where I helped pick blackberries off the old vines. When school started, the principal encouraged my mother to take me to a doctor because I had changed so much over the summer. I was falling up steps at school, my smile had changed from the cute smile she knew I had since 1st grade, my speech was soft, and I could no longer enunciate m’s.
Fifth Grade
At the first pediatrician visit, my dad was upset that the doctor thought I was malnourished. As a farmer, my dad provided plenty of fresh food – milk, eggs, pork, beef, vegetables – and I ate well. That had been a morning visit.
The second visit was late afternoon after school. The doctor asked me to lie back on the exam table. My muscles let go… I plopped. “Oh, my goodness girl, I didn’t expect that.”
I was admitted to the hospital for brain tumor testing. A nun in a white habit held my hand as I went under the anesthesia for a spinal tap. Afterward, I had a horrible headache which lasted until spinal fluid built up. My 10-year-old self felt I was fine on admittance, but they had made me sick. After the spinal tap and a trip to Chicago to consult experts, my St. Joseph, Missouri, pediatrician diagnosed myasthenia gravis and started prostigmin. He told my parents to let me do what I felt I could do. He explained myasthenia gravis as having a motor too small to run the body.
My pediatrician told my parents I was the only child with myasthenia gravis in the United States. We all felt alone with some strange condition no one knew. From being on the internet for over 25 years, I have now met two others diagnosed about the same age and time and I have corresponded with two others. I now know that there were at least five of us in the United States.
My grandparents didn’t think I should go to school with this strange condition. In our rural farming community, they didn’t see the need for “book learning.” As an older one of 8 siblings, my mother regretted not being able to go to high school. She knew I loved school for learning new things and being with friends. She was determined that I go to school.
My mother was protective and took precautions, preparing me to go to school each day. She had me gargle with Listerine to kill germ before school. Luckily, I was rarely sick with any colds, stomach flus, or other childhood ailments. I did have frequent sore throats which the inability to close my mouth properly may have caused.
For that school year, I could barely do two high steps onto the school bus. I took my prostigmin as prescribed. Using my wristwatch from the Joe Optician Jewelry in St. Joseph, I quietly left the classroom to go to the water fountain to take my pill at the correct time.
I began wearing glasses for nearsightedness. Although my eyelids were less droopy, my eyes did not focus properly. Later, I had prisms added to my eyeglasses for better focus for a couple of years as an adolescent.
After a year of struggling with weak muscles, my pediatrician added a pink capsule to my medication. My droopy eyes improved, my sardonic smile disappeared, my enunciation improved, I bounced onto the school bus. By the following year, the pediatrician began to slowly decrease my medications.
Seventh Grade
I was never athletic so I developed quiet interests, especially reading. My best friends had other conditions: ulcers, epilepsy, diabetes, etc. Our 4th-grade teacher had arranged for all her students to write British pen pals. When I was weak with MG, I enjoyed getting mail from my pen pal Christine who had a heart condition. One friend also named Donna had diabetes and we had matching dresses. The one I am wearing in the 7th-grade picture where my myasthenia symptoms were better but not completely gone. Her mother bought the fabric and my mother sewed them.
Three years after diagnosis, I was in drug-free, symptom-free remission. Remission lasted through high school, college, and two years of teaching middle schoolers.
8th Grade
My original diagnosis was long before all the testing and treatments that are now available. It came by ruling out a brain tumor with a painful spinal tap. At the time we didn’t know how intelligent my pediatrician was. He used his knowledge and research to diagnose and treat me in less than three weeks.
Now in addition to a neurological exam, there are many modes to diagnose: blood tests to measure antibodies, nerve conduction studies, single-fiber electromyography, computed tomography (CT), and magnetic resonance imaging. Treatments available include Imuran, Cellcept, cyclosporine, Cytoxan, monoclonal antibody therapies, IVIG, plasmapheresis, and new ones being developed. What is most important for quality medical care is having a physician who understands myasthenia gravis and that each patient is very different. It isn’t a one size fits all condition.
Since myasthenia gravis impacted my life as a child, normal for me is living my life on my own terms to the fullest possible. I feel my life has been “normal” as I have attended school through getting a master’s degree, married 46 years, had a child, worked including many years of teaching, volunteered, and been active within my community. Sixty-three years later my pen pal and I are like sisters. We have celebrated weddings, 70th surprise birthdays, and funerals together. Instead of sending aerogrammes, which takes at least ten days to cross the Atlantic, we share joy and challenges on WhatsApp with plenty of pictures. The technology of sharing our lives has changed with the times as the treatment of myasthenia gravis has changed.
Donna & Christine
60 Years Later
I feel I have had a full life. My hope is that my journey with juvenile-onset autoimmune myasthenia gravis will give children and their parents hope for their futures.
The following blog post was written by Donna Whittaker, a lifelong reader and writer. From editing the high school yearbook to employment and volunteering endeavors, writing has been her contribution. She has written numerous articles on all aspects of living with myasthenia gravis. She was one of the first myasthenics to share her experiences on a website devoted to living with myasthenia gravis in 1996. Her latest work is an eBook, HOPE For Living a Long Full Life With Myasthenia Gravis, with journeys of friends with myasthenia gravis for 25 years or more to give hope especially to newly diagnosed patients for living a long life with this chronic condition. It is free and available by emailing: HOPE4MGliving@gmail.com
Komentáre