Friday, April 18, 2014

Happy Eostre!

Easter:  Originally from name of the pagan goddess Eostre or Ostara.  She was a goddess of fertility and sex, and her symbols included the egg and the rabbit.  The original myth involves Eostre saving a rare bird from a hunter by transforming the bird into a hare, which is why and how the rabbit and egg are tied together.  (The bird was only a rabbit on the outside, hence...eggs.)  When the Roman emperor Constantine decided to make the Empire a Christian empire, the Easter celebration was changed to include Jesus, new life, and resurrection.  But originally, Easter was a pagan celebration of fertility and sex.  And on a side note, despite the fact that 80% of people think the Easter Bunny is a dude (largely because he is depicted with a bow tie) the Bunny in question is actually female.  But I digress.

I trot this out every year at this time.  I wrote it after Carl Sagan but before Neil deGrasse Tyson or Seven Candles.  I am still inspired to stand outside at night from time to time so that I can time-travel under the light of distant, alien suns.  Hence this, from me, circa 2010 and © Thomas M. Hayes:

A couple of years ago, I had the pleasure of being the lay liturgist for the Easter services at the Unitarian Church of Harrisburg.  Which may seem strange, considering that I am pretty much the most dedicated atheist -- some might even say antitheist -- person you could ever hope to meet. For those who heard it and asked for the text, and for those who might like to read it again, here it is:

Good morning!  Happy Easter!  I have to tell you -- as an atheist in a pulpit on Easter, you can feel a little bit like a long-tailed cat in a room full of rocking chairs.  No matter what direction you take, you need to be very, very careful.  Even before I got to where I am now on my spiritual journey, Easter was not my favorite holiday.  I’m allergic to chocolate, and I think those little marshmallow chickens are creepy.  And everybody knows that Santa can lick the Easter Bunny with both of his mittens tied behind his back.  But I digress.  And I am not here to disrespect Easter.  Quite the contrary.  One criticism of atheism which I see frequently on the Internet says that, because you don’t believe in anything, no day is any more special than any other day.  I assume this refers to Sundays and religious holidays, but...this is ridiculous.  I certainly don’t go through life steadily measuring my progress one day at a time until my inevitable demise.  OF COURSE some days are more special than others.  The day my daughter was born.  The day I married my beautiful wife.  The day I heard my first Unitarian sermon.  And if I can appreciate a birthday or an anniversary or even a total eclipse of the sun as “special” then I can certainly appreciate an annual celebration of rebirth and renewal like Easter.  I can’t speak to the “miracle” of Jesus coming back to life.  But I can surely appreciate the new, green life that springs forth from the tomb of a seed’s dark shell.  That’s a miracle.  In the spring, a simple flower can be its own death and resurrection.

I try to live a life that notices the wonder of these miracles.  Another one that comes to my mind, especially on Easter:  when I look up at the night sky, light from other stars comes across an unimaginable distance and interacts with my eyes, with my mind.  With me.  That star may not even exist any more, but its light still lives in my sight.  When I was a boy I used to dream of going into space and maybe someday walking in the light of another sun on another world.  This was something that, once I became an adult, I thought I could never do.  Now I realize that to walk in the light of other suns, I only have to step outside on a clear night.  That’s miraculous.

And while I can’t speak to the resurrection that we spell with a capital “R,” I can speak to the fact, the pure fact, that everyone here this morning is made of resurrected stars.  Carl Sagan used to say, “We are all made of star stuff” because all of the more complex elements of which we are made were formed in the hearts of exploding stars.  Think about that.  Stars died so that we can be.  We all stepped out of a supernova.  How’s that for sacrifice and rebirth?

Those are the miracles that I celebrate this and every Easter.  Because of these every-day miracles, I have come to believe that morality is not something that I need to get from outside.  I believe that the drive to a moral life is inside me, and is inside all of us as human beings.  It grows all on its own, like a seed or a star.  It is why, and how, we love one another.  It is why the ideals of the Golden Rule, of humility, of charity, of honoring your family, are so important to me.  I don’t need the Eternal Reward of Heaven to live a good life.  I try to do good things simply because they are good things to do.  Besides, like Garrison Keillor said, Heaven is not for Unitarians.  We don’t like gated communities.

So I plan to use today to think about the miracles that I see all around me.  I will try to treasure the new life that I find both around us and within us.  Celebrating miraculous possibilities is what gives Easter meaning to me.

Monday, April 14, 2014

Cimzia: Alas, No.

A few months ago I wrote about a new medication we were trying for my Crohn's Disease (and all the other autoimmune diseases I'm stuck with in what my doctors call my autoimmune "package.")  It was called Cimzia ("Trust Your Gut!") and was being offered to me as a substitute for Remicade.  Remicade, you might recall, is the Gold Standard of treatment for Crohn's.  Remicade is infused in the doctor's office once every four weeks via IV, and is a monoclonal antibody that is harvested from genetically altered mice.  There is a small percentage of the population that suffers nerve damage from Remicade due to an allergic reaction.  The nerve damage takes several forms; in my case it was peripheral neuropathy.  I have a condition similar to ALS but affecting only the sensory nerves in my arms and legs.  My motor nerves are fine, so far.  Since I'm losing normal feeling, my brain tries to compensate by making up its own sensations.  Sometimes it's icy cold, or burning hot, or being jabbed by forks, or -- my favorite -- the feeling that you get standing on sharp wet rocks, but not just on the bottoms of your feet.  It's ALL OVER.  As soon as I get used to one, a new one clocks in.  It's a trial some days, I have to tell you.

My gastroenterologist has tried just about everything for me, and not much works real well.  I only got through our recent trip to London thanks to massive doses of Prednisone and lots and lots of over-the-counter anti-diarrhea medicine.  Then they came out with Cimzia.  Cimzia is essentially the same molecule as Remicade, but it is (A) completely laboratory manufactured -- no mice at all and (B) administered very differently.  I gave myself two shots every four weeks with the fancy-schmancy ergonomic pre-filled needles shown up above.  The hope was that I was reacting to the mouse origins.  We tried this for about six months.

Six months, by the way, was how long it took for me to react badly to Remicade.  And, like magic, my six-month doses of Cimzia caused a reaction too.  A pretty awful one; the neuropathy pain started at the injection sites about an hour afterwards, and spread to both arms and both legs.  The bottom line is that it wasn't the mice, it was the molecule itself, and my latest experiment in Crohn's treatment was not only unsuccessful, but spectacularly so.  And I seem to have done myself increased damage in the process.

The only treatment I haven't tried -- because I don't live anywhere near where it's offered -- is to deliberately infect myself with a form of parasitic worm normally found in pigs.  The idea is that autoimmune diseases are caused when the body attacks itself because there's nothing else for them to attack.  It's actually a "thing;" Hugh Laurie even used it on "House, M.D."

And so the adventure continues....

(So maybe THESE little guys hold the cure.  Huh.)

Monday, April 7, 2014

More Than I Can Chew

I am a diehard atheist, so it's especially remarkable when I say that I am honored and humbled by some of the things my church does.  Somehow the Unitarian-Universalists have room for this curmudgeonly antitheist, and it makes me glad.  It still surprises me that I enjoy so many of the services there despite my adamant anti-religious belief.  I enjoy singing in the choir and occasionally am invited into the pulpit to do a reading or share the atheist sensibility on a given topic.  But this month I may have bitten off more than I can chew.

Before my chronic health problems forced me out of it, I had a career as an actor.  Thanks to rheumatoid arthritis I can no longer dance much, but I still enjoy singing and in all honesty I'm a little vain about my speaking voice.  The wonderful Arthur Greene, voice teacher at the University of Virginia, took a nasal, flat-vowelled kid from New Jersey and taught him how to talk pretty good. Not quite the ideal Nebraska accent of Tom Brokaw and Johnny Carson; not quite the stentorian tones of James Earl Jones...but I do OK.  Whenever the church has something that needs to be spoken well, I'm usually on the short list and I couldn't be prouder.

Every year our wonderful music department designs one Sunday service from scratch.  It's called "Music For The Soul."  We have had a number of different themes over the years, always combining some fairly challenging choral music with appropriate readings, and it's usually well-received and well-attended by our congregation.  This year our music director realized that 25 years ago, Unitarian minister Robert Fulghum first published his best-selling "Everything I Need To Know I Learned In Kindergarten."  So she decided to build this year's service around that, including a somewhat difficult reading.  Our director knew it was going to be difficult and at first tried to keep it in the family rather than impose it on somebody else, but their reaction was pretty much, "Oh, I can't do this."

So she asked me.

We are performing "Music For The Soul" twice this year, once at each of our two "campus" buildings. The first time was last week and the next and last time will be this Sunday.  Last week I barely got through this reading.  It's actually getting more and more difficult to get through it, and when you read it, I think you'll understand why.  It follows here -- words from Robert Fulghum:

"This is kind of personal.  It may get a little syrupy, so watch out.  It started as a note to my wife.  And then I thought that since some of you might have husbands or wives (or life partners) and might feel the same way, I’d pass it along.  I don’t own this story, anyway.  Charles Boyer does.

"Remember Charles Boyer?  Suave, dapper, handsome, graceful.  Lover of the most famous and beautiful ladies of the silver screen.  That was on camera and in the fan magazines.  In real life it was different.

"There was only one woman.  For forty-four years.  His wife, Patricia.  Friends said it was a lifelong love affair.  They were no less lovers and friends and companions after forty-four years than after the first year.

"Then Patricia developed cancer of the liver.  And though the doctors told Charles, he could not bear to tell her.  And so he sat by her bedside to provide hope and cheer.  Day and night for six months.  He could not change the inevitable.  Nobody could.  And Patricia died in his arms.  Two days later Charles Boyer was also dead.  By his own hand.  He said he did not want to live without her.  He said, “Her love was life to me.”

"This was no movie.  As I said, it’s the real story—Charles Boyer’s story.

"It’s not for me to pass judgment on how he handled his grief.  But it is for me to say that I am touched and comforted in a strange way.  Touched by the depth of love behind the apparent sham of Hollywood love life.  Comforted to know that (two people) can love each other that much that long.

"I don’t know how I would handle my grief in similar circumstances.  I pray I shall never have to stand in his shoes. (Here comes the personal part—no apologies.)  But there are moments when I look across the room—amid the daily ordinariness of life—and see the person I call my wife and friend and companion.  And I understand why Charles Boyer did what he did.  It really is possible to love someone that much.  I know.  I’m certain of it."

(Charles Boyer in his heyday.)

(Patricia and Charles Boyer shortly after their marriage.)

I don't know what the problem is.  Maybe it's because this year I'm celebrating 30 years of marriage to a woman I fell in love with when we were both 15.  (We lost each other for a while but found each other again at age 29.)  Maybe it's because too many friends are losing or have lost their spouses to illness now that I'm in my seventh decade.  All I know is that I start to lose it in the next to last paragraph and can barely make it to the end.  It's the phrase, "when I look across the room—amid the daily ordinariness of life—and see the person I call my wife and friend and companion" that really does me in.  Every single time, and each one worse than the last.  (I was asked to read it at rehearsals starting about three weeks ago so that the choir could get used to hearing it without being overwhelmed going into the next song, a beautiful hymn called "Dedication."*)

I'm told it doesn't matter.  I'm told it actually adds to the power of the reading, but I don't see how that can be when I'm barely choking out the words instead of giving them the justice and the power that they deserve.  I guess I just have to be glad that it speaks to people.

I know I'm glad I only have to read it one more time.

* Lyrics to "Dedication" by Andy Back, from the poetry of Friedrich RĂ¼chert:
     You, oh you my spirit
     You, oh you my soul
     You my delight, you my sorrow
     My heaven, my heaven, you my heaven
     My falling tears, my joyful heart, my self
     You are the one who brings me rest
     You are the music I sing
     You are the world in which I live
     You're my everlasting peace
     My falling tears, my joyful heart,
     My better self, my love
     You, oh you my spirit
     You, oh you my love.