Leaning Into The Light

“My God, I have no idea where I am going. I do not see the road ahead of me. I can not know for certain where it will end…but I will not fear, for you are ever with me.” ~ Thomas Merton I have never been a person who feels at ease in situations where I didn’t have complete control. Call it a type A personality, label it whatever you would like, I think that most people who find themselves in circumstances that don’t have clear answers feel uncomfortable. Sitting in the eye surgeon’s exam room, I prayed that there would be some kind of answers to the many questions I had – most importantly, what was wrong with me and how can it be treated? The technicians I dealt with were pleasant and appeared concerned. I answered many of the same questions again that I had been asked by both my own eye doctor and my general practitioner. I would learn throughout the coming years that I would find myself repeating my medical history over and over again. The eye surgeon came in and introduced himself. He scanned some papers and proceeded to examine me. Within minutes, he tested my vision by covering one eye, while observing the other’s reaction. “Amazing….” he said to himself. “What?” I asked. Without answering my question, he suddenly left the room and returned a few moments later with what I think was another eye doctor. I’m not certain because we were not introduced. “Watch this,” he told her. He repeated the procedure. While one eye was covered, the other eyelid opened extra wide. This overreaction was an important clue in my diagnosis. He continued to move from one eye to the other. “This is something you only read about – it’s so rare to actually see one of these in person.” The two of them continued to talk to one another as if I were not even in the room. It was a humiliating and helpless feeling. Unfortunately it was one of many I would experience over the years. When you have a rare illness, sometimes those in the medical field lose sight of who you are as a person and only see an opportunity to observe a medical rarity. Another test followed. This one involves injecting a chemical into the bloodstream that tests muscle reaction. It lasted only a few minutes but it seemed like an eternity as literally muscles throughout my entire face twitched, contracted and convulsed uncontrollably. My eyelids were going up and down, my lips moved horizontally and vertically at the same time. I begged him to stop it. “Relax,” he said. “It will be over soon.” When all was said and done, he told me I had something called myasthenia gravis, that I should see a neurologist for treatment and that he would set up an appointment. He left the room and left me with even more questions than when I entered. When he returned, I asked him to again tell me the name of this disease. He tore off a piece of paper and wrote it down. “You can go on the Internet and look it up,” he said. “Your appointment is in about a month. The neurologist can prescribe medication.” “But what do I do in the mean time?” I asked. “What do you mean?” “I have such bad double vision…I can’t drive a car, I’m having a hard time at work…” I felt completely lost. Why couldn’t this man see that? He pulled open a drawer and handed me a plastic eye patch that fits over the lens on a pair of eyeglasses. “Wear this…That should help somewhat.” I stared at him in disbelief. “So you can’t prescribe me any medication for this?” I felt like I was begging. “What am I supposed to do for the next month?” He was already starting out the door. He turned and looked at me, almost irritated. “Learn to live with it,” he said coldly. I have to admit that this was one of the darker moments of my life. I walked out to the car, where Jim was waiting for me. Our next stop was home and an Internet search that would end up giving me more information and more inspiration than ever to find answers to my questions.