The day I got the phone call, I felt the wholeness of my little world, my security, bodily health, relationship, and peace of mind break apart, red hot, and scatter in every direction around me. That phone call was an atom bomb. My life blew to pieces and then rained down all about me. Everything burned.
Three words changed my life: “you tested positive.”
The blood ran from my face into my feet as I hung up the phone. Although my eyes were open, in a spell of synesthesia, I saw nothing but the sound of the blood beating at my temples. I was delivered my test results in a department store, without my shoes on, and in jeans that weren’t even my own. My skin grew cold and foreign.
I don’t remember peeling the denim from my legs, pulling my coat around my body, or stumbling into the November air of the parking lot. Minutes tick by and I have no recollection of their existence. In the following weeks, I find that whole chucks of my life go missing. I am thankful for those disappeared hours… the sound of my own keening and wailing, all animal, would have later haunted my dreams.
I sat in the car as the sobs ripped through me and left no part of my body untouched. They pulsed through my fingertips, clung to my ribs, drew my thighs toward my chest. They puffed into little clouds of steam in the cold, dispersed, and were replaced by more tiny clouds. I cried all the way home, bent double, called my lover, begged forgiveness. He talked me down. Said I had nothing to be sorry for. He went on with life as usual and by doing so, pulled me through all of my darkest days.
I owe him everything.
You would think that I’d have more to say about the details of this day, but it’s grown flat. I remember the back drop of grey clouds and little else.
I wavered between periods of eerie silence that sounded almost like peace and inconsolable mourning. One moment I was calm, while in the next I swore I could feel the tiny, organic machines sliding through my blood, dismembering my liver. During those first weeks, I read all I could about viruses in fascinated horror. In this, I found a strange comfort.
I lived through the nightmare of half a dozen doctors visits, a battery of tests, and waiting for more phone calls that once hung up leave me sobbing into my shaking hands. My bilirubin was so high, I was only a hairsbreadth away from jaundice, a second antibody test came back positive.
My heart pounded as I read domestic magazines in waiting rooms. The insides of my elbows turned the color of plums with bruises that bloom in the wake of one blood draw after another. I dropped ten pounds in a few weeks. The nurses looked at me with chiding eyes and said, “you really need to eat, you know. You can’t lose any more weight.”
But food turned to sand in my mouth. I had been hollowed out and couldn’t seem to fill myself again.
During all this, my one respite was sleep… plagued night after night by nightmares all my life, the dreams I had at that point were more beautiful than any I had ever assumed possible. My sleeping mind drew images in the dark that blotted out my suffering: my beloved dead showed up, smiling; an evening was lit up bright as day with my mind’s fireworks; a door set into the floorboards swung open to blue sky.
My dreams provided me with a much needed unremembereing. Waking up was the hard part; the sweet flesh of night gave way to the hard light of morning. Really, the relearning of your life as you wake up is the hardest part of this disease, next to liver failure.
This is not to say that there is no hope.
Treatment is long and brutal, similar in its side effects to chemo, but at a success rate of 50%, worth the hair loss, headaches, nausea, anemia, and sleeplessness for the chance to have my health back and a glass of chilled white zinfandel. I did my research and found I was ready to wander 48 weeks in that desert of treatment at the chance of being delivered from my suffering.
It was then I decided that I wasn’t going to mourn any more, I was only going to fight.