I have a chronic illness, one that I have been ill with since approx Sept 17th, 2009 when I woke up one day and I couldn’t lift my head off my pillow, my body weighed as though it had died, my brain was gone. Words were features of a past that felt like they were at the end of a long tunnel and all that was ahead of me was darkness. Just yesterday I’d been happily teaching literature, writing with my students, reading a book. Then boom: the next day all gone. I’d been hit with a sledge hammer and I hadn’t a clue what was wrong. I remember calling the college, barely able to get the words out that I was sick, stumbling around for the syllabus so I could give the sub something for the students to do. I had no idea this day was the beginning of the end of a twenty two year career of teaching college English, but it was. Just like that. My life changed forever. I fed the dogs, let them out, went back to bed thinking: I’m dying. It must be some kind of cancer. I was too sick to leave my house. Eventually about nine days in, my friend Jenny came and insisted I go to the ER. I told her no, I was too tired. But I went anyway. The blood-work came back. Everything completely normal. The ER doc said something vague about Chronic Fatigue, but the words didn’t register. I was beyond exhausted. All I wanted to do was go home and crawl back into bed. Days passed, my new dean got nervous. A friend in Rome frantically emailed me and insisted I order a book called From Fatigued To Fantastic, a book about recovering from Chronic Fatigue Syndrome also known in the rest of the world as Myalgic Encephalomyelitis. I barely could read the first chapter, but I do remembe that it said to take D-Ribose, a form of sugar that helped fire the mitochondria. I overnighted it from Amazon. That sugar powder got me out of bed and somehow I made it through the semester and then through the second semester but just barely. I did a shitty job. The students knew it. I knew it, but I had no choice. I had very few sick leave days accumulated, no diagnosis, so no way to apply for short term disability.
Finally I got my first of what would be two crucial diagnosis’s. I got in front of a ME/CFS specialist who told me I was running on empty. The normal range of ATP, the chemical that helps us with energy is thirty to sixty. Mine was at fourteen. She said I had chronic mono, but somewhere deep inside it didn’t sit right. I hadn’t had any of the signs of acute mono when I fell ill. No sore throat, no swollen glands. My Epstein Barr titres were high, but my immune system was weak. and I learned that ninety percent of the population is infected with EBV by the time they die, many of whom never contract mono.
So the time went by and I stayed very sick. I met a man, we fell in love, we got married in spite of my illness. I gave him plenty of outs, but he wanted to marry me, and so I did. If you really want to face yourself, get sick, chronically sick. Friends leave: some abruptly, some fading away like a water color painting hung in the sun, the reds fading to pink then to white. After awhile you find the phone doesn’t ring, no one emails you, the invitations dry up. They’ve all gone on with their lives.
You got off the merry go round and didn’t get back on. You become invisible, a ghost with skin and a heart. I spent five years homebound. I left the house only for doctors appointments and when I couldn’t stand another minute of being at home with my husband who worked from home, I’d decide to risk it and go to the grocery store. And that became my big day.
The grocery store became the glory land. It was like being on a field trip. I’d walk joyously through the sections. Fingering all the brightly colored produce: the red, yellow, green bell peppers, the clusters of red radishes, the purple onions, the light green stalks of celery. Each aisle was a new land to discover. I’d laugh thinking back to my old life about how much I’d hated the grocery store, remembering how I’d lean on my grocery cart, talking on my cell phone while joylessly throwing frozen dinners in the cart, supporting my best friend Mickey in Nevada who was facing a crisis. I’d get annoyed at the people who lingered in the ailes, especially those who left their carts in my way. I wanted in and out. I knew what I was after. and I’d be out of there in less than thirty minutes if the lines weren’t too long. I’d get extra cash at the register because I didn’t trust going to ATMs in a big city. I’d load the bags into the trunk of my car, push the cart to the cart rack, and drive out of there relieved I wouldn’t have to return for another two weeks. I’d drive home, feed my animals, and plop down in front of the t.v. until it was time to go to bed where I’d curl up with a book and read at least an hour before turning out the lights, the zen flute music floating out of my Bose speaker, the dogs snoring contentedly at my feet.
What a difference in perspective. I had no idea how one takes one’s health for granted until one day just like that it’s ripped away from you and everything becomes a decision. Should I spend energy on taking a bath and washing my hair or can it wait one more day?Do I have enough energy to talk on the phone to the last friend I have for thirty minutes without risking a crash that could lead to me feeling so shitty I’d lie in bed and cry for the next five days? Do I dare try to pick up all the clutter that’s accumulating because all I do every day is get out of bed, move myself to the couch, and then back to bed? Can I risk following Lisa, my house cleaner around the house because I’m so desperate for human contact other than my husband? Questions and decisions that healthy people never stop to think about. They get out of bed and are blessed with the fact that their bodies are going to do exactly what they ask of them automatically until they drop into bed later that night and do it again the next day.
That is not the life of someone with a chronic illness. My life reminds me of part of a stanza from “The Love Song of J. Alfred Prufrock” by T.S. Eliot, a poem I fell in love with in high school and taught for thirty years.
“In a minute there is time
For decisions and revisions which a minute will reverse.
For I have known them all already, known them all—
Have known the evenings, mornings, afternoons,
I have measured out my life with coffee spoons;
I know the voices dying with a dying fall
Beneath the music from a farther room.
So how should I presume?”
Yes, how should I presume? I had what my husband called up days and down days and then I grew sicker and the down days took over and the up days stopped altogether and the grocery store fell out of reach and so I’d sit and surf Facebook with my other sick friends to while away the time he was gone, leaving me there sitting in front of the computer dreaming of the lush colors of the produce department, closing my eyes and remembering the bell peppers, the radishes, the onions and the small hiss of the automatic sprayers that would mist the produce so they would gleam, beckoning to the shopper, a busy person who would most like mindlessly pick each item up in an annoyed rush, tick it off of their shopping list, and stuff it into a plastic bag just like I did when I was well so many years ago.