The Guide

I was a furnace. My throat was raw. My bones ached. I could hardly move.

And then one morning, preparing to shower, I discovered a constellation of angry red blisters across my chest. No cold or flu I knew of included anything like this.

I tried to ignore it, but the blisters began to spread and to itch. An itch unlike any I’d ever felt before. Waves of infernal, insistent itching that made me curl up in fetal position in bed.

Desperate for relief, I headed for the Urgent Care only a few blocks away. They were flummoxed. Blood tests, all kinds of tests offered pages of contradictory information. The doctors huddled. One began to call friends at other clinics and hospitals, and returned looking more worried than I was.

“It might be Stevens-Johnson Syndrome,” he said. And then, looking deep into my eyes, he added, “If your condition changes in any way–any way–don’t wait to come here. Go straight to Emergency and tell them what I told you.”

Frightened by the urgency in his voice, I called my daughter on the way out to my car. She scared me even more.

“It kills people, Mom,” she said. “People die from that.”

I don’t remember, now, how she knew. But her voice told me more than the doctor had. I drove home in a daze. Waiting to see if my “condition” would change.

It changed, drastically, that night. The blisters became a ruby red rash. The itch intensified beyond anything I thought possible. When I fell asleep for a short while during a merciful lull, I awoke unable to open my eyes. They had swollen shut.

My hair was slicked down to my head by a greenish slime oozing from the glands in my neck and behind my ears which were swollen to several times their normal size. I called it, later, the “Quasimodo Phase,” because when we rushed into Emergency that morning before dawn, people reacted to the sight of me much as they did to that poor creature.

The doctors did not listen to what I said. This emergency room had a new “system,” advertised on TV, that promised to get you in and out as quickly as possible. The young doctor and the intern he was training decided, no one has ever figured out why, that it was a “virus.” Even the nurse who walked me to the lobby, afterwards, shook her head and said, “It’s not a virus. Call your doctor tomorrow.”

It was Saturday. I would not be able to see my primary care doctor until Monday. And things worsened so rapidly that we were back in Emergency, a different one, the “sister” to the first, within a few hours.

Where we met the same young doctor, yet again. Rotating from the “sister” hospital and clearly perturbed that I was back so soon. And still unwilling to believe what the Urgent Care doctor had said.

Stevens-Johnson patients wound up in the burn unit. Their organs roasting. Their skin blistering and scarring as if they’d been in a fire. A fire caused by a bad drug. An allergic reaction to end them all. That usually does end it all.

But my rash was blistering. The sores in the corners of my mouth fit the description, too, like the “muzzle” of blackened skin from nose to chin. I’d seen it, in the awful pictures I’d found online while searching for my own answers.

He gave me no answers. Just more pills. My daughter burst into tears of frustration. And drove me home. We would not return again.

I was eventually given prednisone, in huge doses. That allowed me to sleep for a few hours after each dose. And when I slept, that very first day, after the first fistful of pills, something changed. Beyond the fever and the itch, something began to guide me.

First, it gave me…Sting. A song that Sting had written. “How fragile we are,” he sings. His voice soothed me. I found more Sting songs on Spotify. To calm me through the long, sleepless nights.

From there, The Guide told me more things. Little things. To soak in water. To drink water. And to use oils. Simple oils. Olive oil. Shea oil. A $2 African oil I’d used to soften my skin years ago.

Water. Oil. Where had I heard that before?

Baptism. Anointing. I was being saved.

I surrendered.

And once I did, The Guide began to play with me. Prescribed chicken soup. The canned kind I’d slurped as a child when I was sick.

“Become as little children,” remember? I remembered. Surrendered. And slurped my soup. And of course, soon, one of my daughter’s oldest friends hauled over a huge pot of soup.

That, too, was part of His plan. To show me why He’d saved me, why I deserved to be saved, He sent more friends. In droves. Friends from my current life to sit with, feed and clean house for me. Friends from lives past—all the way back from kindergarten.

Those who could not visit posted to Facebook, responding to my daughter’s posts, the Open Salon blog posts I wrote when I could not sleep.

Old lovers returned. My ex-husband gathered all my Hopi in laws and all of his sweat lodge brothers to pray, drum and sing for me one remarkable night. While they sang, the swollen glands shrank. The ooze ended. No more “Quasimodo head.”

I rejoiced and sent a woozy email to “all my relations” and loved ones. They laughed and celebrated with me. Among them, and most remarkable of all, an old friend from my days at the Chicago Sun Times, who was so gravely ill himself.

Roger Ebert, with whom I had sat “desk to desk” for years, became my most constant companion. Alarmed by my blog posts, he checked in almost daily. He knew The Itch. He introduced me to a cherry juice that would strengthen me during my “chicken soup” fast.

He became a guide, too. He agreed with our decision to drive to the Mayo Clinic in Phoenix, where the doctors respected The Guide, while offering guidance of their own. And though not a “believer” himself, Roger also reminded me, often, to listen to that Guide. Above all. Always.

I would need it. Over the next nine months, I would have fevers so high the doctors feared for my life. I would turn charcoal black and shed my skin in sheets. Or in flakes like snow falling from my body, when I moved in bed, when I walked, when I removed my clothes.

But one morning, while I was “anointing” my face, the black muzzle began to rub off. And my face, from then on, was soft as silk. It still is. At 64, I have no wrinkles. My daughter loves to tease me about that. An illness that maims most, left me with smooth “baby’s bottom” skin.

Save in two places. One that lost pigmentation entirely and one that became a wild, charcoal black design on my knee. My daughter insists that it looks like a falcon, wings spread, rising into the sky.

When most people see it, they cringe. When I see it, I smile. It’s my “tattoo.” The one my Guide gave me, to remember Him by.

Water. Oil. Childlike faith.

I rose, like Him. Because He taught me how.

There’s a song about that, too. Sing.

Photo credit: Bernhard Plockhorst – www.allposters.com/-sp/The-Good-Shepherd-Posters_i375248_.htm, Watermark removed, Public Domain, https://commons.wikimedia.org/w/index.php?curid=2760086