Sometimes, when my symptoms have taken a particularly baffling turn, but my good humor is still intact, I can appreciate the absurdity of it all. If I were a believer—let’s just say I’m “uncertain”—I’d say God has been having some fun lately at my expense. But it seems unfair to blame God or anyone else for the absurdity that is ME/CFS, an absurdity which has inspired my Dad to nickname the illness, “Edgar Allan Poe disease.”
The past five months, kicked off by this Thanksgiving eye crash, and punctuated by a frustrating number of infections, have been some of the most difficult I have experienced. After a promising couple months of steady improvement, my eyes relapsed on February 2nd, and I have been back in the mask 24/7 ever since. Since November, then, as I have been confined by low energy to one room, and by a mask to total darkness, radio and audio books, and—less often—the internet via my screen reader, have been my lifeline, my chief connection to a world that continues to operate outside my four walls. In mostly good spirits, I have enjoyed this run of listening, to Jane Austen, Somerset Maugham and David Sedaris, to NPR and the BBC’s coverage of Libya and Japan, to The Current, and Radio Classics, and most important, my beloved baseball. I have many times been grateful to be able to hear and listen and comprehend, and have sometimes dared to wonder, not without a little humor and an understanding of the unpredictability and fragility of my condition, what would happen if I lost my ability to hear. What if I lost this last thread of connection, to Mike and my family, to the books and news and radio programs, to the birds outside my window, just starting to sense the late-coming Minnesota spring? I was just joking, mind you. Did you hear that, God?
Four weeks ago, I woke up with noise sensitivity so severe that even the sound of running water is painful. Sensitivity to noise is one of my regular symptoms, common to people with ME/CFS, but for me, it has never been this bad, I can no longer listen to the radio, CD’s, or my screen reader. The sound of Mike’s voice ranges from mildly uncomfortable to intolerable, and our interaction has been limited even more than usual. Now, instead of spending my time between local radio, satellite radio, CD’s, brief phone calls with my family, and conversations with Mike, I spend my days not just alone, and not just in the dark, but in near silence, often wearing earplugs.
Why this has happened, or the eye crash, or the infections, is unknown. Why, after over two years of general stability, my body has taken this sudden and dramatic downturn is also unknown. But this is what ME/CFS is. There is no data on this disease. There is very little research; there are no standard protocols for treatment. It is the Wild West of illness. Mike and I, my family and I, we are on our own, save for a few heroic doctors who are willing to step into this wilderness. All of us are working our butts off to try to change the situation I am in, but we are on our own.
Not one to be undone by a new limitation, I have taken advantage of all these additional hours of free time by re-doubling my focus on the therapeutic aspects of my life. Instead of being structured around radio shows and baseball games, my days are now structured around pills before breakfast, with breakfast, before lunch, with lunch, before snack, after snack, before dinner, with dinner, before bed. I have no excuse for missing one of the three shots I give myself a day, or one of the three transdermal cremes. I have been meditating more, and when I am feeling strong enough, and able to use it, the FIR sauna. For entertainment, I am thinking of trying to learn Braille, which would help me get back to reading, I hope. I am trying to appreciate rest, and imagination, and the life of the mind, revisiting past places, events and people, picturing better days ahead, trying to remember all the words to my favorite songs and the plots of my favorite books. And I’ve even dared to joke a couple of times about what might go next (my voice? my sense of smell, now so essential in identifying food from the fridge or which supplements are which?). Just a little gallows humor in honor of Mr. Poe.
Note: It was challenging to write this post without being able to see or effectively hear, and I owe a lot to my mom for proofreading and posting it. I was not able to rewrite and revise, as I usually like to do, so this is essentially a rough draft.
Since writing this post, things have become worse. The sensitivity to noise is so intense, my whole upper body is sensitive to any sound, and feels often like it is buzzing. I can only communicate by writing things down. Mike communicates with me by spelling out words into my palm with his index finger, one letter at a time.