For those of you who are new to this saga, the "syndrome" is a particularly violent allergic reaction to the gout drug allopurinol which was misdiagnosed several times by local doctors. Because of the misdiagnosis, I was doomed to experience the full wrath of said syndrome.
It wasn't pretty.
But those of you beautiful people who were so concerned after that last installment will LOVE this one. It's not as poetic, just the facts. But I think you'll love what you read...
Distressed by my “Pitiful Pearl” emails, my Hopi friends and in laws decided it was time to go tribal on my ass.
First, my Hopi “sister” Darlene—we call her Doll--described my symptoms to a Navajo medicine woman who mixed two bags of fragrant herbs to be used as a tea or topical rinse.
I’ve trusted indigenous remedies ever since Doll took me to see Effie, one of the best medicine women on the rez, many years ago.
Effie lived in one of the oldest, almost prehistoric looking villages on the mesas. And I have to admit that she scared the sh** out of me—so did her house. It was full of animal skeletons and pots and pans and jars full of…God knows what. Mice and I’m not sure what all skittered around the bones and bowls and pots at will.
Effie herself was this tiny wizened crone who looked like a fairy tale witch. Except that those little black diamond eyes shined like little stars set back in their deep sockets.
After a few minutes listening to Doll and using her own special way of finding the problem, she dug down into my belly with her little skinny fingers kneading me so hard that I felt like my female parts were being rearranged.
Then, she handed me a little plastic bag full of leaves and told me how to take them and what to do when I had finished with them. I promised to do as she said. And I did.
And the problem no one else had been able to solve? Gone in two days. Never to return.
So I was grateful for those herbs. But it was my Hopi ex who finally took charge in a big way.
A devoutly spiritual man, he took a special prayer request to a sweat lodge ceremony. And after he’d made said request, he had an interesting “celestial sign” that told him all would be well.
So he called to tell me about the prayer and the “sign,” and to let one of his elder sisters speak to me as only a Native woman can.
“You can’t leave us yet,” she told me firmly. It was an order. This nonsense had to stop.
And…it already had. Or was beginning to. The email I sent friends afterwards says it all:
“A little while ago, my Hopi ex called to say that he had had a prayer done in a sweat lodge ceremony up on the rez during the “healing round.” Later, he went outside into the unparalleled darkness and silence of the mesa night sky and saw, above him, two white lights like eyes blinking from the cosmos.
He said that the third round had been at around 7 p.m. And it was at just about that time that I suddenly felt a rush of energy and rose from the bed to write, read…enjoy feeling alive again. I also discovered that the last of the huge nodules on the back of my neck had disappeared and my eyes had opened fully for the first time in weeks. The itch is still there…but less daunting. Dull. As if it’s dying...
When Hopis pray, Spirit takes notice.
The end of the illness is at hand.
I just did a dervish twirl in honor of the Infinite.
I am in the arms of the Infinite.
The heat and steam of the grandfather rocks…pre-Prednisone…seeping into my soul long distance.
Sage in the air…my offering.
I’m alive.
I’m alive.
I’m alive.
I’m alive.”
I was also, obviously, still somewhat delirious.
But I was absolutely sure that the good fortune would continue when I headed back to the dermatologist for the biopsy results.
So when that day came, I leapt from my nest of skin flakes eager to be on my way.
I had chosen an outfit that would cover as much of my body as possible, and finger combed my curly “bangs” down as far as I could on my forehead.
And then I sighed and took a good look.
Yikes.
I was a leopard.
My face was mottled; covered with odd patterns of dots in myriad shades of brown and black where the skin has scabbed over.
I have since learned that the best balm for this is a $2 bottle of Africa’s Best Ultimate Herbal Oil, a concoction with a list of fruit, vegetable and nut oils that sound as if they should be poured over mixed greens, not skin.
I have stocked up on the stuff from the “ethnic” aisles of drug stores for years to combat the “ashy” legs and arms black mothers were so vigilant about back in the day.
But unlike the lard, olive oil and Vaseline those ladies turned to as inexpensive fixes, these gentler and more nourishing oils soak in instead of staying on top of the skin. Just the thing to start what will no doubt be a long and complicated restoration of the scabby, splotchy rawhide my face has become.
But as I gazed at myself in the mirror, I felt as if I should get myself a burka to keep from scaring small children.
So I covered myself as much as possible and met my daughter in the garage. She will not allow me to drive myself anywhere until I am well, because I almost fainted the last time I tried.
I could not be more grateful. Or proud. She has become my mother, chiding me if I scratch, bringing me food on trays, watching TV with me to break the monotony of my exile, and checking to see that I have drained the thermos full of ice cold water she refills throughout the day.
She’s frightened. That’s part of it. But I am deeply moved that she has chosen to be strong for me, instead of letting her fear confuse or discourage her or worry me.
We will survive this thing. And look back at it as a very important time in our lives—a changing of the guard of sorts. It’s one of those milestones most of us face at some point. We just didn’t see it coming so soon.
We chose to take my car because it needs to be driven. She got behind the wheel doing a little checklist of things I needed to have or do for this all-important appointment. I confirmed that I had everything, though the morning itch had begun and I wasn't able to focus as well as I wanted.
Satisfied, she hit the ignition. And nothing happened. So she tried it again, and there were a few clicks and then a weak “Woooo…woooo…woooo.”
Neither of us could speak until the car finally started on the third try. We both knew how important this particular trip was, and how dire the consequences of missing it would be.
Relieved to be underway, I asked her if she thought the boif would take it in for a new battery. She smiled and said, “I’ll do it, Mom. I’ll pick one up and put it in later.”
When I looked a bit hesitant, she laughed.
“I know how to change a battery, okay? Just…don’t worry about it.”
I do worry about it, though. I worry that she’s stretching herself too thin. There are days when I can almost take care of myself. But I relapse if I go too far.
Still, I am far better off than sooooo many. This, I know.
I retired early, so I don’t have to worry about missing work. I have a more than adequate and safe pension, a second income from some online courses I teach, and better than good insurance.
Fate has intervened in miraculous ways, too.
First, the beautiful young woman driving confidently through morning rush hour traffic arrived back in the nest just in time to catch me as I almost went plummeting out of it myself. We both marvel at that. When she asked to come home, I was happy to oblige, but...little did I know!
And the Universe had made even more plans for this--I recognize them now.
Among the most remarkable was the reconnection with several old beaus and much -missed male friends who showed up one by one over the past two years. They offered lots of long distance counsel and encouragement during long conversations we could not have had as lovers. No competition, no jockeying for position. Just open, honest discussion.
And when disaster struck, every one of them took dove right in, taking on the role that suited him best.
One of the friends, a bona fide rock star now out on a stadium tour, hooked me up with a homeopathic practitioner he trusts. When I got nervous about the prednisone, he told me he had just done a round of steroids to heal his ravaged vocal cords. Blessed reassurance.
Another has been everything from a pharmaceutical research scientist to a bassist in a blue grass band. I have always considered him my own private Einstein, and that brain of his has already begun mapping out my legal options should I decide to sue.
And my old Sun Times buddy Roger Ebert, one of the first to show up a while back, well…he obviously understands possibly better than anyone else could. He reads between the tortured lines and offers me invaluable bits of experience. And words of encouragement that never cease to amaze and humble.
So my life was carefully preparing me for this ordeal long before it occurred. Which is how I know that it is more than just an isolated, unfortunate incident.
When I am lucid enough, the neglectful utterances and actions that led me to this moment float out of my subconscious, along with the actions that accompanied them.
I was an exile for years before this unintentional “vision quest” began. Nose to grindstone, making nice, making comfortable, making do. I would live later, perhaps. But after a while, I had forgotten how.
I starved body and soul, both, waking at the same time daily to be very good at a job I did not enjoy. Forced to live that lie, I holed up at home when I left it, wanting only to curl up and be free of all obligations. The need to say “No” to something, even fun things, too strong to ignore.
I said “No” to my body, feeding it real and psychic fast food—anything I could grab quickly to keep it at least minimally sated. There were warning signs of danger ahead, and pills to fix them without having to change lifestyle or mindset.
Prophetic, indeed. It would be one of those pills that caused this crisis.
Anderson’s biopsy confirmed that I was indeed having a reaction to the allopurinol. He brought in a colleague who checked the areas that had been most badly injured, declaring that he was pleased that they had dried and begun to shed so profusely.
He also had a remedy for the nocturnal hell I’d been going through that would be therapeutic and soothing.
When he asked me if I had any sweats I could “sacrifice,” I was a little worried. But the new therapy was a jar of steroid-infused ointment I was to slather on after a 20 minute soak in the tub just before bed time. Followed with a layer of Vaseline—ah, the ancestral sistahs are smiling.
The sweats? I was to put them on to help the steroid seep into my pores and also to begin the much needed skin healing and softening process. Those of you who have put Vaseline on your hands and donned gloves for the night know about this.
He watched my face carefully as he explained the routine, as if he thought I might find it a bit off-putting. I could not wait to do it—if he’d said I had to hop on one leg while chanting over the sacred unguents, I would gladly have done it.
As it was, the hours ‘til my “soak and slop” dragged on mercilessly. But at last, when I was feeling naturally drowsy but still awake enough to handle the chore, I filled the tub, slipped into the warm water and heaved a sigh.
Afterwards, I had my daughter cover my back with the glop, and took over from there, smoothing generous dollops all over my body. It was a little difficult to get the sweats on, but I managed, heading straight for my bed.
There were a few uncomfy twinges because as I’ve said, my skin hates contact with anything and the sweats were soft but thick and restricting.
Didn’t matter. I went to Netflix and chose Shadowlands, in which C.S. Lewis (played by Anthony Hopkins) tells lecture audiences that suffering is a part of living meant to help us wake up and grow up.
I did not see the end of the movie. The steroids kicked in and I floated off into the first deep sleep I’d had in weeks.
Bliss…
As the Hopis had insisted, the healing had begun.
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