It’s been a difficult several weeks since I’ve written.
Andrew and I both got pneumonia. He had to miss 3 weeks of school. Because of my compromised immune system, my doctor recommended I keep away from Andrew when he was sick. “You can’t catch this,” he told me. So I moved out of my normal place in my family and into the guest room. I could hear Andrew coughing, and sometimes crying. I could hear Jay working furiously at the kitchen table, trying to juggle contentious conference calls with Andrew’s needs. I stayed away, even though I desperately wanted to be a Mom to my sick boy and a wife to my frenetic husband.
I stayed away, and still I caught the bug. Once I had pneumonia, I understood a little better while Andrew cried from time to time. Everything hurt. Turning over in bed felt like too much work, and I could not stop wheezing or coughing. I didn’t want to go into the hospital, and was willing to do whatever it took to stay out. I went through two rounds of daily IV antibiotics. I slept for 16, 17, even 18 hours a day. My oxygen levels still dropped. “If you go any lower, we’re going to have to hospitalize you,” the doctor said. I hovered at the border line for a week and then, miraculously, the numbers rose.
My body responds to any drama, whether it’s a badly sprained ankle or pneumonia, by ramping up its warped immune reaction that is sarcoidosis. So while I shook with fevers and coughed until I tore cartilage between my ribs, I also got to enjoy more of the vertigo, blinding headaches, and episodes of blindness that are the symptoms of neurosarcoidosis. I also developed a new problem. My left leg, which had before tingled and felt “asleep” from peripheral neuropathy caused by the sarcoidosis, now went completely and totally dead. When I was able to get out of bed, I frequently tripped and fell while trying to navigate on a foot with no feeling.
It was a dark time. I was alone most of the time. Jay got caught up in work crises. I usually didn’t feel up to talking to anyone. This meant I spent a lot of time in my own head, which was not the best place for me to be. At times, I was sure the darkness would swallow me.
Once I began to recover from the pneumonia, I knew what I needed to do—regain my stamina, one small step at a time. That was hard to do, though, because I kept getting knocked down again. I caught a pair of violent stomach bugs from Andrew and then, just when it seemed that spring was coming and would chase the darkness away, I got a serious sinus infection that nearly landed me in the hospital again.
I was ready to stop trying. I was so tired. How many times can you rebuild your life? How many times in the past nine years in Chronic Town have I had to pull myself back together after being torn apart by disease? Why not edge a little closer to the darkness that shimmered, always, on the periphery of my spotty sight?
I was pulled back from the precipice. There are many people who love me, and they would not let me withdraw. Andrew tugged at me. He pushed himself into the darkest corners and demanded that I show up for my life—with him and with Jay. My Mom called nearly every day, and kept calling until I picked up the phone and talked. Then she and my Dad came for a visit to help out when Jay had to travel for work. They cooked and cleaned, cheered me up, and helped Andrew through this time of sickness. My friends Martha and Molly called or emailed all the time. “We are here for you,” was the undercurrent of their messages. Barb and Danna delivered hot meals. When you are sick and tired, not having to worry about dinner is such a gift. Jay’s Dad kept me in audio books, continuing to give me free reign of his Audible account, so that on days and long night when the vertigo was at its worst, I could lose myself in the world of a book. Jay’s Mom arranged for restaurant meals, as did Jay’s Aunt Barbara. Jay’s step Dad, Don, found a neurologist for me to see in Salt Lake City, so that I can have my leg checked out by someone with knowledge of sarcoidosis. My dear friend Amy sent me a card just about every day, along with gifts she made. And Jay kept everything running and functional, so that Andrew got home from school, had a warm meal, and got to bed on time. He listened to me when I felt like talking, and held me when I couldn’t.
These many acts of kindness and love lightened the darkness. They penetrated the total blackness that surrounded me. Every call, meal, card, hug tore a hole in the carapace of hopelessness and sadness that might have suffocated me. Thank you for helping me see the light in the night sky. Thank you for showing me the stars.