The next few months following my MG (Myasthenia Gravis) diagnosis became a blur of hospitalizations, tests, and adjustments to medications which had very unpleasant and sometimes embarrassing side effects. Instead of getting stronger, however, the weakness and debility increased. Within six months of my diagnosis I was unable to go to school, feed myself, or lift my arms to comb my hair. I became bed bound.
Back to the hospital once again, this time for two weeks of bed rest and then a major decision by my parents to allow a surgical procedure which seemed to help some MG patients. It would mean the surgeon would open up my chest, breaking the sternum (breastbone), and remove the thymus gland, which lies above the heart. My parents were told the prospects were slim I would survive the surgery, and on top of that, it was uncertain the surgical procedure would even benefit me if I did survive. But there were no other options for me. Or for my parents.
Looking back, I cannot begin to imagine the agony of my parents. The closest I have come to this was when our youngest son was hit by a car while riding his bicycle. What a nightmare, until later that day after several tests were done, we knew he had no serious injuries; he was fine, just some road rash. His helmet took the brunt of his head colliding with the windshield of the car that hit him. God mercifully spared him.
My parents, however, had watched my decline from a healthy, active teenager to one who now was fading from this life day by day. The prognosis was grim. Little hope was given them.
I remember sitting propped up in the hospital bed, my parents and the doctors in the room asking me my opinion about the surgery they were proposing. Was I willing to go to surgery? I don’t remember all they told me, only that this surgery might help me. I gave my assent almost cheerfully. My optimistic nature, coupled with my ignorance of my real condition, made me hopeful this surgery would make me better. What could I lose? Little did I know.
A few days later I awoke from surgery with an elephant sitting on my chest. Well, it felt that way. At that moment, though I don’t think I’d ever taken anything stronger than an aspirin before, I was glad for pain medication. I was cold and realized my chest was exposed, an embarrassment for a young lady of fifteen years. But I had a raw incision about eight inches long in the middle of my chest, with tubes protruding from under my rib cage—one for the left lung, one for the right. When I tried to speak to my dad standing there next to my bed, a different kind of pain etched on his face, I discovered I couldn’t talk. I had a tube in a hole in my throat to help me breathe, a tracheotomy, he explained, through which I was hooked up to a breathing machine. It pumped air into my lungs, breathing for me since I couldn’t breathe on my own and this made it impossible for me to talk right then. So began sign language, and writing in place of speaking. I learned the frustration of not being able to clearly and simply communicate.
For weeks after surgery I was in and out of consciousness in the ICU, those tubes protruding from my lungs, and a hole in my throat. Finally, after what I thought was a couple of weeks, I was released from hospital and taken home. It was not until years later, in a conversation with my mom, that I found out I had been in ICU for six weeks. I was shocked! I had no idea I had been there that long.
The reason I was there such a long time, my mom said, is because I had almost died. I was on my way out of this life, declining daily. The doctors had known this was a possibility and had tried to prepare my parents. They were doing everything medically that they could do. Lots of people were praying for me, though, many I had never met. My dad had been “wrestling” with God for weeks to save his little girl, but on my worst night when doctors didn’t think I was going to live to the morning, he finally gave me up to God for Him to do with me as He pleased.
The night he let go of me and let God have His way, my mom related, was the turning point in my recovery. I began to improve.