Friday, March 9, 2012

The Common Cold Chronicles, Last Words

The lyrics I clung to for solace...

My “unintentional vision quest” began with a young doctor who misdiagnosed one of the most dangerous allergic reactions a body can have as a “common cold.”   And I’ve talked about the the anger, terror, pain and the The Almighty Itch that followed. 

Now it’s time to talk about the Big Why.  

And…to be honest, I haven’t even figured it all out yet.  But I really, really want to share some of what I’m ruminating about with those of you who have taken this journey with me thus far.

I’m still experiencing it, so all the pieces haven’t fallen into place yet.  But I'm sifting through them, trying to see that "bigger picture."

So take your time with this last installment—listen to the songs, too.  You must listen to the songs, especially Elton singing WITH The Sounds of Blackness down there at the bottom.

The whole thing is a Song.  We are all Songs.  Life…well…you get the picture.  I’m still a little loopy.

But I think I’m on to something here…

I’m gonna go tribal on you again.  But this time, I’m going to go ‘way, way back to my earlest African ancestors—we even know the tribe now.  DNA, the works.  

But this is deeper than place and tribe names.  It’s so deep it’s universal, in that Joseph Campbell sense.  All tribes know this.  All humankind experiences this.

So here’s where this all really began—or was “ordained.”  Yes, The Itch and the ordeal.  There is always a story behind the story.  This is mine.

Many years ago a Yoruba priest drove non-stop from Oakland, California to do a ceremony for me that is usually reserved for devotes of “Ifa,” the Yoruba belief system that is the basis of Vodun, Santeria and more.

He did this because I had told his wife, Luisah Teish, author of the amazing Jambalaya and an exotic  spiritual leader and priestess in the Yoruba/Ifa tradition, about a dream I’d had.

It was a very vivid dream that I felt physically somehow, as it unfolded.  I was standing by a big window, watching an advancing “army” of stately, strikingly beautiful brown and red people walking toward me. 

Behind them, as if part of the procession, was a huge, swirling tornado of which they were not the least bit afraid.  In fact, they seemed proud to be accompanied by it.

I stood watching like a mystified child, looking from face to face, trying to figure out who these magnificent creatures might be.  And just as they got right up to the window, I flung it open wide, and the beautiful creatures and their whirlwind companion SPUN into my third eye.

At that moment I awoke with a start, reeling and feeling incredibly but pleasantly drunk.  I remember that I braced myself with my arms until the spinning subsided.  I also remember that I giggled.

When Luisah read an email from me about this, she insisted her husband call and make an appointment to see me at once.  He felt that I had been initiated by a particular goddess spontaneously—something that almost never happens. 

The whirlwind was a representation of the warrior goddess Oya, the spirit of change and all types of transformations both spiritual and practical.  And though he could not be absolutely sure it was She who had "claimed" me, someone wanted me badly enough to take over my body and make me “tipsy,” something that even some of the most devout never experience.

And because She had done this and brought my ancestors along to witness and approve of it, there were now things I would have to know, do and have.  Even if they were totally mystifying to me even after we met, I had to have them.  Oya would know how to help me use them when necessary.  And Oya would use me, when necessary--in ways I would definitely recognize, when the them came.  And she would not take "No" for an answer.

I didn’t believe a word of it.  Intellectually.  But the part of me that comes from that ancient world, that knows things my intellect cannot make logical, heard and remembered every word, every chant, every gesture he made that day.

And when I was struck down recently…that same part of me knew that my “dis-ease” was  Oya, goddess of hurricanes and tornadoes and alll "transformations," come to tear me down.

It was time for me to “change.”   Not in some chicken shit, "nicey nicey" way.   It had to be ugly--the "reboot" to end them all.  Maybe even literally, if I didn't get the "message."

I was most sure of this on one particularly awful night not too long ago when I thought I really might go mad--I wanted to go mad and just get it over with.

Women who have experienced “natural” childbirth will understand this next part very, very well.  Midwives, obstetricians, everyone who has helped to birth babies will, too—they listen for this.

It’s the moment when the mother-to-be, no matter how well-prepared or self-assured…finally forgets how to breathe, cusses out anyone who tries to remind her and insists that she can take no more.  NO more.

Seconds later she’s holding a gooey little E.T. of a thing in her arms, grinning from ear to ear and those last desperate moments are totally forgotten.  There’s new life to be celebrated and protected.  

I was headed for that very same experience, the night the "goo" I wrote about last time failed to do its magic.  In fact, it seemed to be making The Itch infinitely worse. 

My skin was crawling.  Tingling.  Random patterns of itchier itch than I’d ever experienced.

I felt betrayed and terrified.   

But something deep down, something primal and precious, whispered, “Mama, this is it!   You've been here before!  Grit your teeth…and let it happen…”

I searched Comcast and Netflix for movies I loved.  Movies with messages, movies that would make me laugh, movies that would make me cry—I instinctively remembered the ones that had raised me up or been of comfort in years past, and I sought them out. 

I found whole seasons of my favorite TV shows on their network sites.  I found more music to listen to when I could not watch any longer.  

The Itch jumped from chest to legs.  Back to forearms.   Even my scalp itched—and I found it flaking, too, now for the first time.  A full body assault, relentless and insistent.

But the little voice said, “Ride it out, Sistah Girl.  Ride it out, and you’re home free.”

I curled up in a shivering ball and faced the waves of Itch, watching my movies, crooning my music, and spinning in delirious circles…

By dawn, I couldn’t wait any longer.  I shucked down to shower off the goo that had forsaken me…and skin flakes rained from my entire torso.  Bigger, looser ones than I’d ever seen before.

The goo had actually started The Big Shed.  I scratched a little to help it along.  And then I hopped into the warm spray.

And I emerged from that shower a velvet-skinned goddess.  My face was a smooth, uniform café au lait brown and was actually a bit firmer than it had been before. 

The rest of my body, also smoother, softer--the parts of my back that burned as if fire-singed, will require more intensive care.  But running my fingers over the new skin was a delicious thrill—the “baby’s bottom” silkiness made me giggle.  At 59, I had the skin of a newborn!

My "Metamorphosis" had begun.

Oh, it aint over, folks.  There WAS more shedding to come.  The allopurinol hides in the tissues, in layers you cannot see, and all of the stages of the syndrome begin again, over and over again, until it is all gone. 

So I would again experience the little flu, the rash and the shedding in rapid, frustratingly familiar stages.  But each time is a bit less intense.  And none of that matters.

It’s the Metamorphosis thing that really matters.  Each shedding of skin is another step toward breaking free of all that I was.  And the New Me that will be.

But I’ve learned something about that, too.

See, I may not know, for a very long time, what the Big Why is.  Or what I'm supposed to do next.  I do know that it’s not my business to ask or worry about that. 

That’s the first and possibly most important big attitude adjustment I’ve made.  I don’t have to know everything, or go rushing off to figure out everything or to make sense of it all.

I’ve seen that I am not in charge.  I’ve seen how easily I can be stripped of my “power” if I’m not respectful of it.

And I had not been.  I’ve said before that I had allowed myself to languish—I had, in fact, punished myself for lo too many years.  

During my time as an assistant principal, I remember how puzzled my students would be looking at the woman behind the desk…and then the woman in the pictures behind her, standing proudly next to rock stars and movie stars.   Grinning and flashing the peace sign in front of European castles and…places they all hoped to go someday, with my Angela Davis ‘fro.

“Is that really you?” they would ask.

They knew it was me.  They just couldn’t put see that me…in the me they saw every day.  The woman on the wall was someone they might’ve liked to meet.  The woman behind the desk…was someone they tried to avoid meeting.

They also said it because they knew how much it hurt me to hear it.  I was a pretty cool chick, still, to most of them—some of them could still see vestiges of that wild woman in my eyes sometimes.  The crazy kids, the kids I would’ve been like…sometimes they felt it.  And would sit with me during lunches, as if we were secret co-conspirators.

But I was still an assistant principal.   A campus “cop.”  I had sold out.  I was a cautionary tale.

Oh, but I had a baby girl to raise and her welfare had long ago become my sole concern.  So I did what I had to do, or what I thought I had to do, for so long that I forgot to ask myself what I wanted to do.  What I needed to do.  For me.

I was even was able to retire just as the big administrative layoffs began in our district--every single one of us got a pink slip that year.  But I retired early, hoping that our younger assistant principal with small children would be able to keep his job when the dust settled.

And suddenly...I had lots and lots of time.

And I didn’t know what to do with it.

Oh, I did a lot of things I’d said I would do when I had time.  None of it touched me.

I felt that I had done all I was going to do.  And that my life had all come to a comfortable but uninspiring stalemate.  I might, this little bit of me whispered, actually be relieved when it was over with.

It was never a conscious yearning for death.   Just a resignation that I had not found the joy I should have and that sitting around stewing in bitterness and disappointment while waiting for it to be over, wishing it were over, as my mother had, did not appeal.

Well, honey let me tell you that Spirit listens to those little “voices.”  And The Itch was my “out.”

“You wanna leave, Miss Thing?  Here’s your chance.”

Oh, yes.  I knew what this was.  From jump. 

I also knew that the incompetence and insensitivity I faced when I was misdiagnosed and ignored was Spirit upping the ante a little bit to see if I would fight despite my disappointment.  But I was also being asked to disengage from my anger, from all of my emotions enough to intuit the messages that really mattered. 

Several times during the worst of it, doctors and nurses and clerks at hospitals and doctor’s offices have said, “God, you have the most amazing attitude---I couldn't do it.”

I wasn’t  “doing” anything.  I was listening and watching…and learning things that had nothing to do with them.  And I guess that’s what they felt.

I just knew that the real healing would not come from doctors.  So it really didn’t matter if anyone knew what was wrong with me or not.  Spirit knew what was wrong with me. 

Spirit had called my bluff.

I saw and raised.  And I think I’m going to win this one.

And when I am finally ready, I’ll get my orders.   Big assignments, little assignments.  Crazy stuff, magical stuff.   I am a daughter of Oya.  And she will tell me what needs doing.

And I will have what it takes to get the job done, because of the “cold” I had. In fact, I actually have to thank Doogie for misdiagnosing me.  Oya sent him.  He was Oya.

Making me “tipsy” again.  So that I could hear The Message. 

What was it?   Oh, my dears, you’ve heard it a gazillion times.

Remember that last scene in It’s a Wonderful Life when the entire town rushes to George’s house to prove, in person, what he has learned from his time in exile with his guardian angel?

Until he nearly lost all…he could not understand how “rich” he had always been.

That's it.  

But George got only the one angel, Clarence, who got his wings for helping George sort things out.  

I…have dozens.  People I’ve known for ages, people I don’t know save through the Internet…legions of them began showing up.  Out of the blue.  Some after decades.

And I got my wings for recognizing and accepting their love—that was a lesson, too.  That I was worthy of it, and that many had been waiting for me to see it for a very long time.

I have told you about my knights in shining armor and the famous among them.   But there were everyday angels, too.

In the early days, when I was far, far away in the Fever World…women friends came to squeeze a toe and say, “I’m here, girlfriend!”  And then left me to sleep while they helped my daughter get the house in order.

Others brought me homemade chicken noodle soup—with some lovin’ on the side.

Some called just to speak to me even if I couldn’t speak to them.  One wrote and told me to put the notes in bed next to me and pretend they were there with their arms around me.

Some cried because they couldn’t stand what was happening to me, or what it would mean to them if I didn’t make it back from wherever I was.  And told me so out loud so I’d fight harder.

Some stopped writing to me for a while…and then began to send me odd little emails that they had not written, but with messages that told me they were also afraid they might lose me.  I knew that was their way of loving me, too.

Others got mad at what was happening to me…and got busy trying to fix it or find someone who could.

A long lost friend from elementary school, reading of my plight on Facebook, found my phone number somehow, and called to tell me to drink lots of cherry juice.  I could not speak to her, but I thanked her on Facebook…and was mightily moved.  We were tiny tots the last time we’d “spoken.”  I could see her pretty face as it had been back then…and it made me cry.

Likewise, Gary Houston, a long lost friend from the Sun Times "coincidentally" found me on Open Salon…read the last few entries…and hasn’t stopped writing and sending me little things to make me smile, since--a big box o' chocolate, most recently.  Dude knows how to make a girl feel REAL good...

And so an orphaned woman with only tenuous ties to what is left of her blood kin has begun to watch the Universe knit her a new family, friend by friend.   My body was being healed while the long imagined rift between me and the rest of the world was also being repaired.

Happy birthday to me.

My endless love, to all of you.

Elton...sing me home, man--THIS is why black folks tried to "claim" him back in the Bennie and the Jets days.  I found this by "accident" one day, and found myself singing along for courage on many a dark day. 

Amen.

And "Hekua Oya!" 

The Common Cold Chronicles, Pt. III

 
In the second installment, I scared a few people sideways describing the hellish symptoms of my "syndrome" and how I tried to cope with them. 

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.

 

 

The Common Cold Chronicles, Pt. II

In the first installment of this sad saga, I explained how two ER doctors misdiagnosed my potentially fatal allergic reaction to allopurinol as everything from a cold to “contact dermatitis.”  

I am typing this at 2 a.m. because I no longer sleep more than one or two hours a night as the “syndrome” that could have been stopped or slowed had I been correctly diagnosed and admitted continues to wreak new even more visible havoc.

Welcome to my nightmare… 

I am a slave to The Itch.  The relentless, crazy- making, teeth grating Itch.

And there is nothing I can do to calm, slow or end it.

Had I received the correct diagnosis and care when I went to the ER, I might have been spared the agony to come. 

But I did not.  So my “syndrome,” one of the most severe and dangerous allergic reactions one can have, is now too far advanced to be stopped.

I have to let it “run its course.”   And as it runs its course, it drives me to the brink of madness daily.

The cycle begins with a persistent low grade fever as the allergic reaction accelerates.   Then, a blazing red, measles-like rash begins to spread gradually outward from your chest and back down to your extremities. 

Little welts and bumps erupt within the measles rash.  And then the rash morphs into massive red blotches that consolidate and cover your entire body.  

You know when the morphing has begun because The Itch intensifies.  And none of the usual antihistamines or topical creams can stop it.  It’s drug fighting drug—a macabre  stalemate that makes this type of reaction doubly difficult to treat.

My daughter was first to notice that I also had big patches of raw pink unpigmented skin on my back—this is why many patients are treated in burn units, as I mentioned earlier.   In extreme cases, the reaction looks and blisters like a second to third degree “fire” burn and must be treated as such.

The shedding begins a few days after the blotching.  The skin begins to flake and peel. And the cycle will repeat until all of that allergen is purged from your body.  

No one can predict how many times, though I was told that an allopurinol reactions as severe as mine would take weeks, maybe months, to run its course.

There is internal damage, too.   Early on, lesions in my mouth and throat  made eating or drinking difficult.  When I tried to eat solid or hot food I could feel it injuring the tissue. 

But most of all, I am bullied by The Itch. 

I’ve had to lock myself away from the world to endure it.  I need to be able to thrash and gnash and rock and moan.  I need to be able to leap out of bed, hug myself and shudder. 

At times, the touch of a garment, bed sheet or the scratch of a tiny crumb left over from an earlier meal will bring on a full force attack.  I throw off the offending fabric or frantically sweep the crumb away and lie tray to lie still, praying for respite.

Some nights I can sleep only after my body just could not stand to be awake any longer.   I try to tire myself out by pacing the room or just standing up until my knees buckle.

Friends who came to lend a hand learned quickly to offer a quick visit to my room, and then offer their assistance to my poor exhausted daughter.  If I fell asleep while they were visiting, they did not wake me.

I could see in their eyes how much both the physical and emotional damage scared them.  It terrifies me.  I have no power over this thing.

But I do have Dr. Christopher Puca, my primary care physician.  And he is the hero of the story thus far.

The gout med had been prescribed by a rheumatologist.  So Puca had been out of that loop.  But after receiving those calls from the ER over the weekend he demanded I be in his office first thing Monday morning.

I was there early.  Desperate, discouraged and disfigured. 

The syndrome turns the skin around the mouth, nose to chin, into taut, scaly rawhide that refuses to moisturize.  I could cover up the rash, but the strange darkened skin that pulled the sore corners of my mouth into a perpetual frown could not be hidden.

But I was greeted with warm concern by the reception staff as if they had heard the ER story already. 

In fact, they probably had.  Ars Nova is not your typical medical group.  

And Puca is your typical allopathic physician.  He’s quite a character in general.  I mean that in a good way—it’s why I’ve stayed with him for so many years.

He greeted me with the news that he had been with Occupy Tucson all weekend, and was galvanized by what he’d seen.

I wasn’t surprised.  We talked politics during all of my yearly visits.  Children of the 60s, we hold very similar views.

But I also knew those talks were also an important part of the examination process.  As we conversed, he read my expressions, body language.   Only after that would the physical examination begin.

His first “prescription” was often an herbal or a dietary approach.   A med might be prescribed as well, but he preferred that I know and try other alternatives first, if there was time.

When he saw the blazing red swatches covering my body, he knew that there was no time to lose. 

He got his entire staff to call the "magic" numbers of specialists who owed him favors.  He wanted me to be seen that very day, if possible. 

I was grateful for the sense of urgency, but I also felt a tinge of guilt.  It was officially lunch time, and there was clearly something special going on.   

I had seen someone wheeling in little rolling trays full of fruit and other goodies into a room in back.  Other docs on the same floor were arriving to fill plates.

But Puca sat with his arm around me while directing the search.  They finally got one of the best dermatologists in town to agree to see me first thing the next day.  Then Puca told me how to use some of the meds I already had to help me rest a bit ‘til then.

When I got home, I sat at my computer just long enough to send them fancy chocolate dipped berries the next day, to make up for missing so much of their lunch.  

And the next morning, the young dermatologist who'd accepted my case took one look, winced, and shook his head.

“It’s the allopurinol,” he said confidently.  "There may be more to it than that, but from what I’m seeing here…that’s the culprit.”

He would confirm that diagnosis by cutting a little divot out of my skin for testing.  

I had no problem with that.  In fact, if he’d told me he needed a finger, I would’ve readily consented.

He also prescribed the monster doses of prednisone I should have received in the ER. He admitted that it might be less effective now that the reaction had gone so far. 

He also told me about that "stalemate" I mentioned earlier--it might not work at all.  But it would take a week to get the test results, and he didn't want to waste any more time.

I got the pills on the way home and slurped them down with a glass of milk as soon as I got home.  Seconds later, the prednisone began to send radiating bursts of warmth into the scarred tissues of my back.

When the incessant Itch abated for the first time in two weeks, I swooned into the first real sleep I’d had in as many days as well.

The earliest eruptions began to heal.  But new ones appeared.  And after the predisone wore off…I was left with The Itch. 

It would grow stronger and stronger as each hour passed.  By nightfall I was a crazy woman again.

I talked to my demons in the dark.  I drank ice water hungrily.  I paced.  I rolled.  I kicked and twitched.

But…some nights…I danced. 

One of those nights, I found myself dancing and singing to what must be Sting’s entire catalog.   It’s on Spotify.  And I discovered I had missed a lot of good music over the years.

I'd given him up just after his "jazz" phase, which I actually loved.   But he was becoming a parody of himself. 

The "endless orgasm" brag was the last straw for me. The saver of rain forests was now giving tantric sex advice on the talk show circuit. 

So as one of his songs suggested, I set him free.  And he returned right on time. 

Yanked out of my agony by the first notes of a blazing hot live version of Message in a Bottle, I bounced to the beat in the middle of my bed.  It brought back my college kid/rock crit days—pogoing in punk dives in Chicago.

And then I realized that the collection had been placed in a very interesting order.  As the night continued, the music became more soulful and symphonic.  There were also some old English folk tunes he’d reinterpreted…perfect lullabies.

It was like curling up in the lap of an old lover to sing songs from our shared memories. 

One of them was now stunningly apropos.

How fragile we are, he rasped to me through the darkness.

I curled up in fetal position…and wept.

 

The Common Cold Chronicles, Pt. I


A short while ago, I wrote an Open Salon post about a battle with gout that had just begun.   Lots of wonderful people wrote back to express concern, so I attempted to comfort them with an update that said I had found a great doctor who was putting me on a med that would bring my uric acid levels down.  We would then decide whether to continue that med or not.

I never got to make that decision.   It was made for me when my body had one of the most drastic and dangerous reactions a body can have to a drug.

I should be dead.  And caca can still happen.

But I’m here now.  And I’m going to write about the war going on in my body here, as it rages on.  And the life lessons, too.

These posts will not be as polished and perfect as they should be sometimes because the meds I'm taking to combat this thing make me a little loopy.  And my emotions veer wildly, too.

But…I will tell you the truth as I experience it.  Because this should not have happened to me.  And I hope to make sure that it never happens to anyone else, even if all I can really do is tell the story so that someone recognizes the danger signs sooner and yells a little louder than I did when they’re told it’s just a “cold.”

 ******

I’ll spare you the pictures but…let me give you a little description of what I looked like on that first wee hours trip to the ER.  It will make what happened there even more incomprehensible.

You remember that little book about the Chinese kid who swallows up the sea and holds it in his mouth—if you’re my age you saw it on Captain Kangaroo or something.  And I don't even remember why he swallows the sea.

But his face is all swollen up and his lips all pursed out and he looks like if you stuck a pin in his cheek his head would burst open like a meat balloon.


That’s what I looked like.   With a big, swollen neck pouch like a bull frog, too.  In fact, I sounded like a frog croaking because my glands were all swollen up and about to close.

My ears had turned to tree bark, oft slimed by a strange yellowish green substance leaking from my lumpy, ravaged lymph nodes. 

I also had a really freaky, blazing red rash all over my body that scared everyone who saw it.

Except the young doctor who sent me home after what has to have been the fastest visit to the Emergency Room in recorded history.  I was triaged, he felt my neck and said, “It’s a virus.  It will run its course,” and sent me back home with a little paper that told me what to do for the common cold.

It also listed his name as Dr. Neil Harris.  Oh yes.  Minus the “Patrick”  but never the less it was indeed still the name of the actor who played Doogie Howser the child doctor back when. 

And I would’ve laughed but I was afraid I might code blue on the way back home, choking to death as my windpipe finally swelled shut.

But…that couldn’t happen.  It was a cold.  He knew it without any tests, he knew it by just feeling and not really looking at my ravaged body.  I knew I wasn’t breathing right, but I left the hospital with my tail between my legs like a kid who’s been reprimanded by the principal’s office for talking back to a teacher. 

I had been told I might have to go to the ER a few days before when an Urgent Care doctor looked at the beginnings of the flaming rash Doogie had seen, and ran a bunch of blood and other tests in rapid succession. 

And as I related in a previous piece about this, he told me that if I was having the type of reaction he thought I was having  (Stevens-Johnson syndrome or the less dire but still very serious precursor to it, DRESS) I should head for the ER at once.

"Do not wait to come here--go to the ER and have them call your primary care physician and tell him what I told you," he said.

Later, the nurse who helped check me out had me repeat those and some other instructions aloud.  She especially wanted me to remember the part about not taking the drug that was apparently causing this "EVER AGAIN."   The way they said and did this told me I had reason to be very concerned.

You get these symptoms when you're the 1 in 5000 to 10000 people who are allergic to this particular gout med.   It causes rashes and other ugly stuff in lots of people, but only a few react as severely as I was about to. 

Some will have the severe reaction suddenly after taking it successfully, symptom-free, for years.  I have a feeling those are the fatalities.  If it nearly killed me after only four weeks...I don't want to know what would've happened after say, four months or years.

I would later learn that it even fights the water you're told to drink and shower in trying to flush it away, making you itch and welt up as it tries to get deep down in there and do its job.

That is why it works.  And also why it kills people.

I can’t understand why I didn’t go all Southside Chicago Girl on him.   I think I was mostly embarrassed to be walking out of the ER only maybe 30 minutes after I got there with patients and staff looking on.   But I was also too sick and scared to think straight.  I had to concentrate on breathing.  Yelling…maybe later.

Unfortunately, the next day, the toxins woke me up choking yet again.    We headed for a different ER up our way, hoping to be taken seriously.   

“Dr. Harris will be with you shortly,” the grinning young nurse informed me as I lay down on the little cot thing in one of the little cubicles in back.

Neil Harris?” I asked.

The smile waned.   I wasn’t smiling either.   If looks could kill she would’ve fallen over dead on that cot with me from the one I was giving her.

“I…I don’t…really know his first name,” she said as bravely as she could.  “But he’s doctor on call here today.”

I gave the Universe a wry, “You and me need to talk” smile and settled back down on the cot.

I would see Doogie again.  I had no choice.  But this time I took out the cards with my doctors’ names and numbers on them and insisted he speak to them, trying yet again to explain that this was NOT a cold.

He made the calls and this time had some tests run.   And then put me on an antibiotic that I would learn very quickly was the one thing you DO NOT feed the syndrome I had.  Because it will kill the little things you need to fight what is happening to you.  And give you bigger and better infections.

But he printed out the scrip and another little handout about…I’m not sure what…and sent me home.Again, looking like a bullfrog, only this time I had a fever and my eyes were slits. 

I looked so bad that the receptionist in the lobby said she hoped someone would be able to do something for me soon.

I thought, “Isn’t that…why I came here?”

Other patients looked at me askance, too.   It amazed me that even people who knew nothing about medicine were obviously thinking:  “This woman is allergic to something.  Her throat is very big.  She could choke.  Maybe they should find out what is causing this before she dies and they get sued for millions of dollars by that teary eyed young daughter of hers who looks like she wants to kill someone right now.”

On my third trip in three days…I was spared Doogie.  But I spent a whole day being tested for things just so that they could prove, I think, that they had done something. 

None of the intravenous things they tried did a damned thing.  I remained, as another truly concerned and contrite nurse noted, just as swollen around the face and neck as I had been when I came in.

Initially she’d seemed to be readying me for admission.   I filled out some papers, did this odd nose swab thing and waited.  

But again, instead of keeping me overnight and getting some help the next day maybe as my real physicians suggested, they sent me home with some more meds and a pat on the back.

And that’s when I realized that I really could die from this.  And sent out an email S-O-S to everyone I love so that if I died they would know why.

But there’s more to it than that.  This is one of those “holy shit” archetypal journeys the Universe with the wicked sense of humor sometimes asks you to take.

Actually, you’re not asked.  You’re thrown in the big waves and told to deal with it.  Ride ‘em or drown in ‘em, but…you’re goin’ in.

If you’re lucky, something like grace sweeps you up and sets you down in the tube…and you look down that tunnel and wink at the Universe with a cocky, “Just…gimme a minute ‘til I’ve really got this, and then we’ll get to work.  I just need to get used to seeing so clearly.  It’s disorienting.  Bitchin’ but disorienting…”

And the Universe says, “I’ll be checkin’ in from time to time.  If you really manage to survive this…we will have MUCH work to do, Grasshoppa.”

How can you tell I’ve been having wicked fever dreams?

That’s okay.    I’m gonna hang ten, baby.  I’m in for the ride of a lifetime and I know it.

I may thank Doogie someday if I survive.

Wait—no.  That feverish I’m not.