Internationally renowned jazz guitarist John Stein was born and raised in Kansas City, Missouri. Amidst the vibrant tapestry of jazz history, Stein's story stands as a testament to resilience and the power of music, illuminated further by his battle with Myasthenia Gravis. In this blog post, Stein shares his journey through his diagnosis of MG and the enormous amount of patience it took to regain his ability to play his guitar and return to playing jazz.
My myasthenia gravis story began in 2021. I began to notice symptoms of the disease that spring. I was having issues with my vision. They were mild at first – less visual clarity and a bit of double vision. I tried to correct the problems with a cataract surgery but that did not help. It was not until September that additional myasthenia gravis symptoms began to appear. My left eyelid would not close and my right eyelid drooped. One morning I tried to take my large multivitamin tablet and could not swallow it. I called my doctor’s office and, fortunately, got a nurse on the phone who had a neurological background. When I described my symptoms, she said “Do you want me to call an ambulance, or can your wife take you to the emergency room right now.”
I spent a month and a half in the hospital (including 3 weeks in the Intensive Care Unit). My throat muscles were among the muscle groups that were affected so I was intubated for several weeks in order to breathe. I had to be fed through a tube because I could not swallow food. At the hospital, I was given a number of the typical myasthenia gravis treatments. Some seemed to work better than others, but overall, I gradually improved. After my time in the hospital, I spent 2 weeks in a rehab facility in order to gain back the strength to return to my home. During those 2 long months in hospital and rehab, I lost 40lbs of muscle mass due to physical inactivity. Once I was able to return home, with the help of my wife and in-home therapy, I gradually regained my weight and strength, begin eating normally and lost the feeding tube, and otherwise began to resume my normal life over the next year.
Because my symptoms were not recognized and diagnosed quickly, I had what the doctors called a Myasthenia Gravis Crisis. If I had not been in the hospital in the Intensive Care Unit when I passed out, I may very well have suffocated. I woke up with the tube in my throat in order to breathe. I have been well cared-for by the hospital staff and the doctors who have guided me back to health. As far as I know, Myasthenia gravis is not considered a curable disease, although there are increasingly effective treatments to help people afflicted by it. I have been symptom-free for more than a year now, and three years after the first symptoms manifested themselves, I finally feel like my old self again. I am encouraged by the knowledge that if symptoms were to reoccur, I would recognize them quickly and take steps to avert another crisis.
I am a jazz guitarist and when I was in the hospital I did not know if I would be able to play again. I was so weak from my hospital stay that when I finally returned home and touched my guitar, I could barely hold it in my lap and did not have the strength to press the strings down. It took many months for my hands to regain their strength and flexibility in order to play at my former level. I kind of knew that my skill would return over time and I was able to remain patient as my vitality gradually returned.
I am very grateful to have more years with my family and friends. I am grateful that I have been supported by those loving people and also by my professional colleagues – my record label and my musician friends. I am grateful that I am once again able to compose and perform music. I am very grateful for the careful and expert care that I continue to receive from all the medical personnel who support me. During these three years, my neurologist has kept me informed about several new myasthenia gravis treatments that seem to have positive results for people suffering from the disease. If myasthenia gravis returns in my life, I feel confident that I will recognize the symptoms quickly and we will be able to treat the disease utilizing an effective method. The primary lesson I have learned is that it is important it is to diagnose the disease promptly and to received expert care from medical personnel who truly know this disease.