nakedjen

My Heart Took Flight

This past weekend, I went home.  My heart burst into a thousand fairies and took flight.  I was unable to contain my happiness, my joy, my weeping, nor could the rain and sometimes knee-deep mud deflate my soaring spirit.

I have often said, more times than I can possibly count, that the Oregon Country Fair is my religion.  After living these last eighteen months in the long shadows of the Mormon Temple, learning to both respect and question those who are not quite like me, I soaked and drank deeply from the love bestowed from my tribe.

There were so many beautiful moments.  It was as if I was experiencing the fair for the very first time in so very many ways, and perhaps, honestly, I was.  Certainly it was my first fair in this incarnation of me.

I made so very many new and special and dear friends this year.  Hello new friends!  I also renewed cherished friendships that I am blessed beyond blessed to share with such a vast array of truly beautiful souls. 

The most important lesson I learned, was perhaps something I already knew, deep down, way down in those corners of my soul that only I can possibly know.  It will never matter who else may decide to go to the fair because the fair has always been about community, about sharing, about love.  The abundance of joy experienced just standing amidst a throng of grooving strangers is enough to light up your megawatt smile for the entire rest of the year. 

I am blessed, I am renewed, I am naked with ecstatic gratitude.  And there's just 361 days until I get to do it all over again.  I've a lot of loving to do between now and then, while I keep the joy and wonder alive, alive, alive!

Sunday Evening Seven

1.  The Brits are celebrating Naked Friday.  In a whole new way.  At the office!  And it's even going to be televised.  Who would have imagined that my beloved Brits would be getting their kit off at the office on a Friday in hopes of boosting office morale before some brave cutting-edge start-up did it right here in the United States?  I'm proud of them.  This takes Naked Fridays to a whole new level, don't you think?

2.  Yesterday there was a twitter conversation about the possible offspring of Nakedjen and Karl Rove.  Never, honestly, never would I have ever guessed that my name and Karl Rove would appear in the same sentence.  Not in a million years.  The fact that it happened on the 4th of July?  The day we each individually celebrate that which makes us proud to be American?  Well, that just was the icing on the cupcake.  Cracked.me.up!

3.  Isn't it rather odd how we celebrate our independence and freedom by spending all that money on firecrackers made in China? 

4.  I officially live in Salt Lake City now.  I am uncertain how the shift really happened and I feel rather schizophrenic even saying this as my heart still feels so very attached and deeply connected to Santa Cruz.  There's no denying, though, that Salt Lake City is home.  I know this because I go out and about in this city, this city of hundreds of thousands of people, and I run into people I know.  Friends!  Randomly.  Just going about my everyday life, I have chance smile encounters that warm my heart.

It's the warming my heart thing that has sealed the deal.  There are beautiful people here (as there are everywhere!).  I am glad to know them and to call them my friends.  I'm glad to live here with them.  I'm glad to be home.

5.  I leave for Veneta on Thursday.  On Friday evening, while celebrating Naked Friday, I actually found myself just a tad melancholy at the thought that the next Friday I would be in Veneta at the Oregon Country Fair and the first day would ALREADY BE OVER.  I'm such a sap.  The fair truly is my most favorite of all my festivals and it's all I can do to truly immerse myself in the love and soak it all in for those 72 hours.  My soul, my heart, my everything just.can't.wait.  Whee! (If you're meeting me there, please email me, so we can square away the details! xoxox)

6.  There's vegan ice cream in my freezer.  Vegan ice cream made without soy.  Vegan ice cream that is free of processed sugar.  Vegan ice cream that makes me smile from the top of my head to the tips of my toes.

7. I use Twitter.  So does he.  I use Facebook.  So does he.  I write this blog.  There's overlap and intersections that come from the people that sew together our lives.  Is it ever possible to say what I really want to say, sometimes what I absolutely must spit out from the dark reaches of my aching soul, without causing pain to someone and protecting my/his/her/their privacy?  I've learned, it just isn't possible. To truly do that, I need to journal in small notebooks.  I've filled my share of small notebooks.  I would have to exit the Internet, Stage Left, and me being me, I am just not capable of doing that.  At least not yet.  This is my therapy.  It was my therapy while we lived our happy marriage online, it is still my therapy while I untangle those lives lived entwined and sort it out into my own.  It is what it is.  I just have to remember that not every email that ends up in my inbox is going to be kind, not all words written about me are true, and that he has his own version of our story, too.

And The World Spins Madly On

It's quite surprising, shocking sometimes, really, the things that will knock you positively sideways when you least expect it.  You're going along.  You're doing just fine.  You're feeling at peace, like perhaps life really is just fine and then you open a box of musty, dusty, crusty camping mattresses and the smell, his smell, his ancient smell that you had sworn you had forgotten, that you can't possibly fathom could still be lingering there, envelopes you more strongly than the strongest of Jitterbug Perfumes and you're, well, sideways with your heart in your throat and wondering, just wondering, if you'll ever, truly, be right again?

In my rainbow soul (it's colorful, you know) I do know that I will be right, that I am right, that I am okay.  This is just another one of those moments.  Smells, tastes, touches, sideways glances just have their way of catching you off guard, of sneaking up on you when you're on auto-pilot to rip the controls out of your hands and remind you that life really is one grand roller coaster ride and that the stomach dropping dips make it all worth really screaming about.

I'm screaming towards the Oregon Country Fair.  Unfurling the musty, dusty air mattress with smells of DearSweetDave that conjures up such bittersweet memories to check for leaks and make sure it's sleep-worthy, setting up the tent (and finding his long forgotten things inside the inside pocket on his side) to ascertain that all the parts are there, writing list after list and with special elfish magic checking them all thrice, springing open my massive costume trunk and letting my wings take flight.

I vacillate between sheer joy and complete and utter weepy madness.  The Oregon Country Fair is just infused with so much emotional history for me.  Ten years of sharing it with David helped to supplant the previous emotional histories of sharing it with the boy(s) who came before him.  Now?  Well, now it's time for new stories.  

A new history began many moons ago, actually.  I suppose it has always been my story.  David was just one of the (un?)lucky players upon my stage.  He got quite the leading role there for a while before he decided to exit stage left and just kept going.

I said recently that this summer was my summer of love.  All love, all the time.  My heart is open, is ready for love in ways unexpected, is more than ready to drop from my throat to my toes.  I want new brushes of kisses where kisses need to go, I want smells that remind me of touches that tingle and I want to feel like I might just forget to breathe.

I want it all.  I want it now.  Won't you join me at the Fair?  Please.say.yes.  xoxox

Friday Five

1.  We have a new member of the family at ChezNaked.  Much to the chagrin of Stella (especially Stella) and Buddha, I decided that we needed to rescue a cat.  Zelda had found herself in a rather unfortunate situation and as I've often found myself in similar spots and hoped that someone would be kind to me and offer me a home, I opened our hearts (well at least mine, at first) and home to her.

At this point, everyone is getting along far better than I ever expected would be possible.  Stella and Zelda even share nose kisses in the mornings when they get up.  Let me share that before Zelda entered our lives, Stella was positively convinced that all cats were alien creatures that had to be obliterated.  Period. 

Stella hasn't quite made the connection that the cats she sees in the neighborhood are actually the very same alien that is now residing inside her house, but maybe we'll get there eventually.  At least she's fond of Zelda, Zelda (whom I was told would absolutely NOT ADJUST TO LIVING WITH DOGS) adores the dogs and best of all, I haven't seen a MOUSE in the HOUSE since her arrival.

2.  Did you know that if you were lucky enough to live in Utah, (oh if you were only so very lucky) that you could actually hire a NINJA to do your dirty work for you (or maybe even just come clean your house?). 

According to his advertisement, he will do almost any job.  He is one ninja, he works alone, and he will not work out of state.  So, honestly, you have to live in Utah if you want to hire this particular Ninja.

I'm so tempted to hire him.  To walk the dogs.  In his Ninja outfit.  Off leash.  Stealthily.  So no one gets in trouble and no one gets caught.  Because, you know, isn't that what Ninjas do? 

Or maybe he can just come clean my house.  In his Ninja outfit.  Stealthily.  So I don't even realize it is being done.  I like the element of surprise.  Especially when it comes to a clean house.  Just ask anyone whose ever come and visited me.  Surprise!  It's not clean!!

3.  I had the pleasure of seeing Away We Go on Wednesday night at a free screening here in Salt Lake.  I was already excited to see the film because the director is Sam Mendes.  I've been a huge fan of Sam Mendes since my days at the Donmar Warehouse in London way back in the 1980's.  The man overflows with talent.  Like a volcano. 

I know that there are those out there who take umbrage with Sam being from the United Kingdom and then coming here and making movies about angsty AMERICA when he isn't even American, but I believe that sometimes the clearest mirrors come from those who are outside looking in.

Plus, I really believe that while films like American Beauty and Revolutionary Road are set in America, the stories are universal and Sam Mendes leaves room in each film for us to breathe in our own experiences, live our own stories.

Which is why I adore him.  He gets out of the way in his films. 

I was delighted with Away We Go.  Truly.  I leaned forward in my seat to capture every word.  That, my friends, is testament to the screenwriters, newly married David Eggers and Vendela Vida.  I have been a huge fan of David Eggers since A Heartbreaking Work of Staggering Genius hit the shelves all those years ago (he signed my first edition copy by drawing a picture of a cute fat pig!) and before that with McSweeney's.  I've had a subscription as long as I can remember.  I feel like I've eaten his words for breakfast.  So when I learned, during the credits of the film, that it was he that had written a script where I truly just didn't want it to end, well, I was not suprised.  Because I never want anything David Eggers to write to end. 

I wanted this film to keep going.  I just did.  It's that good.  My favorite film of the year so far. 

4.  I never had Farrah hair.  Nor did I own her famous poster.  As a lumpy very white kid from the East Coast, I did envy her sun-kissed California tone and glow and that dazzling smile of perfectly straight white teeth.  More than anything, Farrah made me want to be a girl from California.  To me, that image from the 1970's is still the image that comes to mind when I think of a California Girl.  It's crazy, yes, since I actually lived in California for more than 20 years and know, honestly, that California Girls, like all women, come in every conceivable shape and size and color. 

I never really watched the Jackson Five on television.  The song, ABC, though was truly part of the soundtrack of my childhood.  Shake it, shake it, baby.  Come on girl, show me what you can do.  I thought when Thriller came out, that the Michael Jackson/Quincy Jones combination was perhaps one of the most powerful singer/producer combinations around and watched in awe as that album took the globe by storm.  I saw Michael Jackson at Wembly Arena in London and am grateful that I did for the performance factor, alone.  But then I got terribly angry with him when he outbid the Beatles themselves for ownership of their own catalog of music and I will admit that I continued to lose admiration for him as he seemed to become more tortured himself.  I feel that perhaps that wasn't my kindest or best self.  Of course I didn't know him.  How could I know him?  It is precisely because I did not know him personally, did not know his own demons, did not understand who he might truly be, that I should have sent nothing but kindness towards him. 

As a child, the sounds of Johnny Carson's tonight show were often the lullabye that sang me to sleep at my grandparents' cottage on Cape Cod.  The cottage was tiny.  Our whole family plus the grandparents and often all the boy cousins, too, crammed into just three rooms.  The old black and white TV in the corner of the room would be tuned to Johnny with a patchwork quilt of small children in various stages of slumber lying prone before it.  I always did my best to stay awake for the whole show.  It was so smart (to me, the four,five,six,seven year old) and funny and I just loved Ed's booming belly laugh and how very much he loved Johnny.  He was familiar, in the way that all my Irish relatives are familiar, and honestly, the sound of his laugh could always bring me home.

5.  Love is fire. But whether it's gonna warm your heart or burn your house down you can never tell.
                             (I will love you. Always. Thanks for you).  26 june 2009

Aye, There's The Rub

I am a woman without medical insurance.  Basically, I am a woman who has multiple pre-existing conditions that the health insurance companies of this great country we all call America have decided they would rather not insure.  I am not insurable.

Recently, I took a job at a hospital.  I am a hospital employee.  Who does not have health insurance.  Because none of the insurance providers that are part of the hospital's plans are willing to insure me.

I'm working a full-time job where I was promised health insurance benefits, but I have none.

We're on the precipice of what could possibly be great health care reform in this country.  I say possibly because it is often the case that the hopes and dreams for true reform get watered down and lost along the way in the back and forth that is our great democratic process.

I've joined with Dr. Howard Dean (yes that very same Howard Dean) to hopefully have a loud and participating voice in these new reforms.  Every American, regardless of gender, race, religion, income or employer deserves a public health care option.  Anything else is not reform. 

Peeple of zee wurl, relax!

I've heard from many of you (wow, so many?!) who think that the previous post was my fond farewell.  That I'm hanging up my blogging shoes and going for a walk where the climate suits my clothes. 

While a move to a place where the climate suits my clothes (Maui, anyone?!) seems like a very lovely idea right now, I just want to assure all of you (yes, you and you and you and even you way over there) that I am not finished.

There are far too many words squirreled away in my head and sharing them here, with those of you who are kind enough to actually read them, is sort of what I have to do.  Not even what I want to do.  It's kind of like an affliction.   Getting the words out actually helps to keep me sane.

Of course I know there are those who take umbrage with my version of sanity.  That's fine by me.  I'm pretty certain I'd take umbrage with their version of sanity, as well.  ;-)

So sit back, have a nice cool beverage of your choice, listen to whatever music makes your heart sing and know that more words are most certainly coming. 

That Path Is For Your Steps Alone

So, there I was.  A patient at Johns Hopkins hospital with two different brain surgeons presenting two very different options to me for the exorcism of Baby Jesus. 

Dr. Alexander was suggesting that a biopsy was the best course of initial action.  That since no one was quite certain exactly what kind of tumor with which we were dealing and it was certainly not responding to treatment the way one would expect, that taking a small sample of the tissue would be a non-invasive way to determine what it was and then we could create a treatment plan.  It would require that they drill just a very small hole in my head.

Dr. Tamargo was far more aggressive and direct about his course of action.  He looked  me in the eye and said, “Whatever it is, it should not be there, right?  So it needs to come out.  Period.  We need to cut open your head and take it out.  The greatest concern is that the location of the tumor is in the part of your brain that also holds your memory.  There is a chance that there may be some tissue loss or damage and you may not remember who you are after the surgery.  Still, you can’t live with a tumor like that in your brain.  It needs to come out.”

I was left to contemplate and weigh the two options.  Biopsy just a small fraction of the tissue or cut open my head and remove part of my brain.  The second option could also result in me no longer actually knowing who I was.  Contemplating the life I had led thus far, option number two in some ways felt like a gift.

Besides, Dr. Tamargo had said that I couldn’t possibly live with a tumor like that in my brain.  Whatever it was, whatever was causing it, whatever the types of cells, it needed to come out.  If it meant that I would have to learn my life over again, well, it was a risk I was just going to have to take.

As news of my decision and the resulting possibility that I may not remember whom I was scattered out among my friends, the telephone in my hospital room began to ring incessantly.  On the other end were people from all facets of my life, stringing together treasured memories of my life like a jeweled necklace that only I could possibly wear.  I truly felt loved while I lay there in that hospital bed.  Loved and cherished completely. 

At the request of the doctors, my mother brought in photos of my life thus far and created a collage on the wall of the hospital room.  The thought was that we would use it after the surgery to stimulate my memory, if there was a memory, to recall and perhaps remember moments, fragments, pieces to create a whole.

The night before my surgery, as I lay spooning in my hospital bed with S, all other visitors gone, contemplating that the next day I may not even recognize him, one of the very sweetest and best people who had shared so much of my life thus far, the phone rang one last time.  It was BamBam.  With some musical guests. 

To my shrieks and squeals and applause, the dolce notes of Ripple came floating over the telephone wires along with those lovely harmonies of Jerry and Bobby and Phil’s singing voices.  Tears streamed down my face and I know this is a moment that could only really be appreciated by those who loved that band and those boys the way that I truly did.  They sang and then they “fared me well” promising me that the music would help me to remember me.  Jerry was especially encouraging and reminded me to just listen to the music play.  I will always treasure that moment and that very special band.

I do not remember sleeping much that night.  The nurses came for me around 5:00 the next morning and my mother was already there with her extra strength maternal hugs.  Dr. Tamargo had told my mother and me that this surgery was going to take all day.  That it was complex and invasive and that she would be waiting a long while before he would be sharing any news with her.   My mother's best childhood friend arrived from Connecticut to sit with her, to be her support.  I said my goodbyes to both of them and was wheeled on the bed down the hallway to Neurosurgery.

I had decided the previous day that I would shave my head completely for the surgery.  My hair at the time was long, thick, curly and reached nearly to the top of my butt.  It was just hair.  It would grow back. 

Everyone that morning was so chatty.  I remember we talked about truly shaving my head.  The guy who did it was sad to do it and asked me again if I was sure I wanted my whole head shaved?  I joked with him about the new fashion statement I could make with a half-shaved head.  How it would be all the rage among Deadheads.  Then squeezing my eyes shut, I begged him to please just do it.

After lots and lots of more quiet buzz and activity, honestly, all I remember is the anesthesiologist telling me to count backwards from ten.  I said the number ten, ni…And that’s all I remember.  Until Dr. Tamargo was waking me up. 

“Jennifer, it’s Dr. Tamargo.  Can you hear me? I have very good news.”
“You do?”
“Yes.  It wasn’t a tumor!”
“Not….a….tumor?”
“No.  It was a very, very large blood clot.  I removed it.  You’re going to be just fine.”
“You guys are awesome!  Can I have some lemonade?!”

My mother, who was sitting vigil with her best friend and the gaggle of musical boys in the surgery waiting area, expecting to be there all day, was quite shocked when a nurse approached her and was told that Dr. Tamargo would be out to see her shortly.  I had been in surgery for about 3 hours.  My mother, because she is my mother, was certain that I was now dead.

The doctor came out with a huge smile on his face.

“It wasn’t a tumor.  Not a tumor at all.  It was a very, very large blood clot.  Did you know that Jennifer has a dent in her head?”

All those head injuries had actually saved my life.  It’s amazing to think, honestly, that a drop on your head when you’re just six weeks old could turn out to be the very thing that one day saves your life.  Every experience, even the most tragic, holds a gift. 

What had appeared as a large mass in my head was actually a very large blood clot.  A blood clot that had not actually burst because I had a dent in my skull.  The dent was acting as a cradle for the Baby Jesus.  And as the clot grew larger, expanding, creating pressure and pain, but not bursting beyond its arterial walls, that dent kept it contained.

Dr. Tamargo had cut open my head and discovered this large angry clot where he expected to find the tumor.  He had removed it and had repaired the artery using some plastic clips.   He took a biopsy of a small amount of the surrounding tissue.  Then he put my head back together. 

Of course, because no brain tissue was truly removed, no tumor even existed, I woke up and knew exactly who I was.  For better or for worse,  my life, my memories, my soul was exactly as it had always been.

I spent two days in ICU with tubes coming out of all kinds of places (the freakiest for me was the one that went through my wrist, up my arm and into my heart) suctioning and slurping and bleeping away and then just like that I was back in my room looking like I was practicing to be a mummy for Halloween with my fancy headdress of gauze. 

My recovery from that point was fairly quick.  My head, free of the Baby Jesus Clot of Demise, no longer hurt!  I could see and I was no longer having hallucinations or seizures. 

Of course there was the matter of what actually caused the blood clot in my head and for that they brought in Dr. Bell and his team.  Dr. Bell is a leading Hematologist at Johns Hopkins.   He and his team ran the gamut of popular theories and possibilities and tests and then they concluded that I was the one in a million consumer that actually got a blood clot from using birth control pills.  It’s a common risk for those who use them.  It just rarely actually happens.  Somewhere in the fine print that comes along with those Ortho Novum pills it mentions that clots are a risk.  I had been taking birth control pills without incident since I was 18 years old.  Who knows, honestly, why at 25 my body decided it was not longer going to play nice with them.

I was discharged from Hopkins on May 26, 1989.   I spent about a week more at my mother’s home and then, then I flew back to San Francisco.  Back to my life.  I had survived.  I was alive.   I had a lot of living still to do.

*********

Those of you who have read this blog for a very long time know that this story doesn’t truly end here.
I am ending it here, though.  For now. 

Thank you, from the top of my head to the bottom of my toes and mostly from my very big heart, for being my audience and for listening.  Always.

Just Like Jesus

It's coming. 

I've been sidelined (maybe flattened is a better word?) by a migraine since Saturday.  I'm at the point where an ice pick in the forehead feels like the only possible answer for relief.  This is not yet another story about a bad headache, though.  I actually have good doctors here and am doing my best to take good care of me.

Taking good care of me means not spending a whole lot of time at a computer screen.  The story is not finished.  It will be.

In the meantime, I'm going to keep the shades drawn and hope for better weather.

Maybe Not So Naked

I have not abandoned the story and intend to finish it, if only for myself. 

I will admit that Sunny's comments have left me a tad stymied.  I am not a medical professional.  I am not pretending to be writing this story for medical accuracy.  What I am doing is writing an account of the events that truly happened to me.  My story.  From my memory.  If there are medical holes, the holes are of my own doing because I am trying to at least make this story readable and not just a regurgitation of my medical file.  But I am not making it up.  This is not a fabrication.  This is my life.

Short of scanning in my complete medical file, I do not believe that Sunny (and readers like that person) are ever going to believe that what happened to me truly happened to me.  As Sunny said, "Many medical weird things DO happen to patients all the time. But they don't happen over and over again and again to the same person."  Unless that person happens to be me.  Because, honestly?  They happen to me all the fucking time and I wish I was not so damn lucky.

I just want to say for all of you reading this blog that if you would like me to continue, please let me know.   I'm beginning to think that publicly sharing this story, in this way, was not the best of ideas.  I am also beginning to question just how naked I should really ever be?

Blessings.

Pinning the Tail on the Donkey

Then, just as quickly as I had been cradled in love, been nothing more than a galaxy of stars, experienced the very breath of the Universe, I was back in a hospital bed surrounded by more nurses and doctors than I could possibly count.

The discord of the cacophony in that room at that moment of re-entry was so overwhelming that I just grabbed my head, covered my ears and started to scream.  In that moment, that moment of realization, that second of awakening, I truly was not certain that I really wanted to still be alive? 

The whys of my life, like they do for all of us, often haunt me. I will not even begin to pretend that I have found the answer to that question.  It still puzzles me.  I just know, with certainty, that like every single one of us, I am here for a purpose.  I also know that it is not for anyone else to determine that purpose.  That choice is mine.  It is the knowing that makes it a powerful choice and it is the knowing that has informed the living that I have since done.

Once the doctors and nurses were assured that I was stabilized more tests were ordered.  I was back on my merry-go-around of wheel chairs through the maze of hospital corridors.  Hooked up to machines.  Pricked with needles in nearly every vein. Attached to electrodes.

What was most curious to the doctors was that though they had me on a course of medications that would have normally caused a cancerous tumor to react and behave in a very pre-determined sort of way, the mass in my head was not responding at all.  In fact, it was behaving quite the opposite.  Instead of shrinking, it continued to grow.  At a rather alarming rate.

With the growth came continued and more dramatic hallucinations.  Now I was conversing with the dead.  My dead grandparents were frequent visitors to my bedside and I was recounting long and very intimate conversations with them to the doctors.  I was also telling them about the parades of dead people that were marching up and down the hallways.  They were really noisy and could they possibly ask them to hold their festivities only during the daytime instead of all night long when I was trying to also sleep?

We were now in the third week of May.  As a surprise, my gaggle of hippies had flown in from San Francisco and honestly my hospital room often looked more like a sit-in than a place of healing.  At any point in the day, you’d find them reclining on the floor, curled in bed with me, strumming on their guitars and singing me songs.  I was so grateful for their love, for their presence.  Somehow, having them there instead of 3500 miles away, made even the hallucinations seem like part of the party.
That weekend, I had tickets for the Grateful Dead’s special AIDS benefit concert in San Francisco.  I told my swarm of doctors that it would be terrific if they could please have me fixed up in time to be back there to dance in front of Jerry, but as time wore on and the Baby Jesus continued to grow instead of shrink, it became rather obvious that I wasn’t leaving Hopkins any time soon.

So I called the Grateful Dead ticket office from my hospital room.  In 1989, if you were a deadhead worth your patchouli, you purchased all your tickets directly from the Grateful Dead ticket office.  Long before we had the Internets, we had the Grateful Dead hotline and ticket sales that involved quite an elaborate process of knowing just how to order with a properly filled out 3 x 5 card request, two envelopes and a U.S. Postal Money Order for the exact ticket price amount.  It was all rather complex, but brilliant on the Dead’s part.  It cut down on counterfeit ticket sales and it also allowed their most dedicated fans access to tickets at all venues before they went on sale to the general public.  This, my friends, is how someone who lived in Washington, D.C. was able to tour and see the band all over the country.

I spoke to BamBam.  I actually had quite a long love affair with BamBam.  We had never actually met one another, but he knew me from my very elaborately decorated envelopes (another trick to getting noticed in the stacks that arrived eager for tickets!) and because I had been such a consistent customer.

I shared with him that I wasn’t going to be able to use my tickets for the concert that weekend because of a certain Baby Jesus in my head and currently being a few thousand miles away from the venue.  I also asked him if he would please “miracle” my tickets to an AIDS patient in San Francisco who perhaps might enjoy the show?  Surely because they were doing this concert in conjunction with the SF AIDS organization they could find an AIDS patient who wanted to go?  Could he please give my tickets to that patient?

BamBam assured me he’d miracle my tickets to a deserving AIDS patient.  Then he looked at my outstanding ticket orders.  The summer tour was kicking off June 18 at Shoreline.  He had my tickets for the entire summer tour right there.  Would I be going on tour?  What should he do with my order?
I asked him if he could wait a few days to fulfill it?  I explained that the doctors were still trying to solve the case, still trying to figure out what course of action to take, still attempting to shrink my tumor.  I told him I was determined to be there, to go on tour just like always, but I couldn’t be sure right now.  I would have to call him back.

The gaggle of hippies sitting in my room immediately offered to take my tour tickets.  Of course they did.  That’s the thing about deadheads.  Yes, we’ve got your back, but when the chips are down if there are tickets floating about, we’ll we’re ready to take those off your hands.  Especially if we didn’t get our own mail order in on time.

I told the gaggle of hippies that if I didn’t make it, the tickets were all theirs.  I even promised to call BamBam back and to personally transfer ownership from me to them. 

I had two brain surgeons who were both focused on unraveling the mystery of the Baby Jesus in my cranium.  Despite the fact that I was at Johns Hopkins as a case study and as a charity case, both surgeons presented their findings and their hypotheses to me.

Allowing the patient to ultimately manage her own care certainly makes perfect sense to me.  It is what we all want and hope for in every situation.  We do not want our doctors to play God.  I fully admit that after that long and arduous journey to arrive at that moment, I wanted to be as involved as possible in making every decision about my health care.

The problem was that my brain was not exactly equipped to be making big decisions.  There were the continued hallucinations.  All those dead people crowding the room and constantly parading about with their big bass drums!  The phone kept ringing with phone calls as more and more friends and family learned that I was really sick.  Then there were the drugs themselves.  I was foggy at best in my thinking with days and nights getting mixed up and very uncertain on some days of exactly who I really was.

This was the patient they wanted to make a concrete decision about her own brain surgery! It would have been easier for me just to pin a tail on one of the imaginary donkeys marching by in the parade.