• Editor’s note: 2020 would have been the third MG Walk Paula McGinnis has hosted on Kaua‘i, but response to COVID-19 has caused McGinnis to move most of the activities online for 2020.
One morning at daybreak I ventured through the wet, dewy grass to the small vegetable garden to pick the vegetables. My balance is often unsteady, and as I reached to pick a ripened tomato I began to fall into the tomatoes. I was fortunate that morning that I caught myself on a tomato gage. At that moment, the lyrics of a children’s song came into my thoughts, which brought a little humor at the beginning of my day: “I Think I Can.”
When life takes a tumble backward, how do you respond? Do you respond with a negative attitude, “I can’t do it,” or keep a positive attitude, such as a fairytale, “I thought I Could?” “I AM #MGSTRONG,” and keeping my faith through the adversities.
Maybe my coping mechanism is different than most, but I developed a persevering, can-do attitude when I was in my early teens from my mother and piano teacher. When I made the comment to my piano teacher, “I can’t do this,” she shook her #2 pencil at me and said, “Can’t never could do anything.” I first felt fear, and then tears filled my eyes, but as the years passed it left a lasting impression in helping to develop the attitude which I have today.
I was living the life of a very happy, healthy, active, mid-fifties-year-old, and I had all the energy that life had to give, with some extra at the end of a long day. I thought that I had my life all planned out. WRONG! Life can change drastically when diagnosed with an autoimmune disease, and unfortunately having one autoimmune disease often leads to others, such as in my own life.
My last plan in life was not to be slowed down by a rare neurological disease. My symptoms began in 2004 with sudden onset of extremity weakness, which improved after a couple months. Two months later I began to have jaw weakness while singing. In 2006 I developed bilateral eye ptosis, which is eyelid weakness, along with the facial and jaw weakness. After clinical evaluation and testing I was diagnosed with myasthenia sravis, also known as MG.
You may question what is myasthenia rravis. MG is a rare, chronic, neuromuscular, autoimmune disease which causes weakness of the voluntary muscles that control basic movements that we often take for granted: walking, talking, smiling. It comes with eyelid weakness, double vision, difficulty chewing and swallowing, and problems with the arms, legs and breathing.
Then there is the myasthenia crisis, when the diaphragm becomes too weak to effectively breathe. The patient will often be placed on ventilator assistance. There are approximately 100,000 Americans who cope with the debilitating effects of MG. Myasthenia affects individuals of all ages, genders and races. The Myasthenia Gravis Foundation of America is the only national organization dedicated to research, awareness and advocacy efforts to help MG patients. See myasthenia.org
Through the process of an insurance denial, appeal and approval in 2014, I realized that I am my best advocate. I stepped out of my comfort zone, created #MGSTRONG as an advocate, and organized the first Southern Illinois MG Walk through the MGFA, and share awareness with others who do not know about MG. The Southern IL MG walk has had MG participants from the four state area. See mgwalk.org
I have learned that I AM #MGSTRONG, because when I am weak I am strengthened by keeping my faith through the adversities. I am thankful each day that I have kept a persevering, can-do, positive attitude, and I truly know and understand the importance of the expressions: “Take time to smell the roses,” and “Live life one day at a time.”
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Paula McGinnis is the myasthenia gravis ambassador and Southern IL MG Walk coordinator.