Sunday, March 28, 2010

Thank You, Dr. House!

Forty-four years ago, I was diagnosed with Crohn's Disease.  I was 13 years old.  For those who may not be familiar with the disorder, Crohn's is a chronic inflammation of the gastrointestinal system.  The cause is not known.  There is no cure.  There is no reliable treatment.  Different regimens work differently for different patients.  I had been suffering from acute abdominal pains about an hour after eating, and nothing I did seemed to change that.  Sometimes I was able to all but ignore the pain.  Sometimes I thought my appendix had ruptured.  Finally, after some nasty tests involving pouring liquid barium into my various orifices, it was determined that I had regional enteritis, aka Crohn's Disease.  Since the initial diagnosis I have had two surgeries to remove parts of me that were deemed to diseased to remain inside.  I also had to have two additional surgeries to deal with the non-Crohn's consequences of the other two surgeries.

Over the years I have regularly added to my list of chronic symptoms.  I began suffering debilitating headaches.  I assumed that these were either the same migraines from which my mother suffered, or were the result of the sinus and allergy problems I'd had since childhood.  My doctors treated me for chronic migraine.  

A few more years and I began to suffer from migratory joint pains.  Some days it would be a shoulder and wrist; the next day it might be the ankle and knee on the opposite side.  Some days there were no joint pains at all, and on others I felt like the day after a car wreck.  My docs assumed that along with the Crohn's I had another autoimmune disease, rheumatoid arthritis.  Part of an overall autoimmune "package," so to speak.

Next I noticed that my feet were feeling cold all the time.  When I took off my shoes to rub some warmth into them, they felt nice and warm and normal to my hands.  I went to a neurologist, who ultimately determined that I had a rare form of something called peripheral neuropathy.  After a nerve biopsy that has left one of my calves completely numb, my doctors told me that what I had was a progressive degenerative disorder of the sensory nerves in my extremities.  My brain was compensating for the loss of actual sensation by providing me with false sensations of cold, or heat, or electricity, or bugs crawling on me.  One of my doctors at the Hershey Medical Center likened it to ALS (Lou Gehrig's Disease) but of the sensory nerves rather than the motor nerves.  I have since lost a little motor function as well, but most of the nerve damage seems to be confining itself to sensory reception, for which I am very, very grateful.  I may not be able to feel the floor under my feet, but I can still walk on it.  Once again, I was told that this was part of my autoimmune package. 

I began taking some pretty heavy duty drugs to suppress my immune system -- we're talking the same drugs, at the same doses, that organ transplant patients get -- and that seems to have my autoimmune disease under tenuous control.  It's not great, and I still have plenty of "incidents," but for the most part I can live my life.

Still, I have always wondered what was really going on inside my body.  It seemed to me that there ought to be more of a connection between all my symptoms than "autoimmune package."

Last night I watched an episode of "House" that we had recorded last November and never watched.  The final diagnosis was "Extraintestinal Crohn's Disease."  I had never heard of extraintestinal Crohn's, and believe me when tell you that when I was first diagnosed, I studied Crohn's quite extensively.  But there it is:  extraintestinal Crohn's Disease.  Finally, somebody has started putting the pieces of the puzzle together!  I quote now from Wikipedia:

"In addition to systemic and gastrointestinal involvement, Crohn's disease can affect many other organ systems. Inflammation of the interior portion of the eye, known as uveitis, can cause eye pain, especially when exposed to light (photophobia). Inflammation may also involve the white part of the eye (sclera), a condition called episcleritis. Both episcleritis and uveitis can lead to loss of vision if untreated.

"Crohn's disease is associated with a type of rheumatologic disease known as seronegative spondyloarthropathy. This group of diseases is characterized by inflammation of one or more joints (arthritis) or muscle insertions (enthesitis). The arthritis can affect larger joints such as the knee or shoulder or may exclusively involve the small joints of the hand and feet. The arthritis may also involve the spine, leading to ankylosing spondylitis if the entire spine is involved or simply sacroiliitisif only the lower spine is involved. The symptoms of arthritis include painful, warm, swollen, stiffjoints and loss of joint mobility or function.
"Crohn's disease may also involve the skin, blood, and endocrine system. ...Crohn's disease also increases the risk of blood clots; painful swelling of the lower legs can be a sign of deep venous thrombosis, while difficulty breathing may be a result of pulmonary embolismAutoimmune hemolytic anemia, a condition in which the immune system attacks the red blood cells, is also more common in Crohn's disease and may cause fatigue, pallor, and other symptoms common in anemia....
"Crohn's disease can also cause neurological complications (reportedly in up to 15% of patients). The most common of these are seizuresstrokemyopathyperipheral neuropathy,headache and depression."

It's basically a laundry list of most of my symptoms!  Rheumatologic disease, anemia, neuropathy, headaches, and let's not forget depression because I have also had plenty of that....

They aren't any closer to a cure, but it sure is nice to know that the picture is slowly coming into focus.  And to know that I'm not crazy; it really IS all connected.  For most of my life I have been waiting for an answer, and finally, finally, it's looking like that wait was not in vain.  Thanks, House.

Sunday, March 21, 2010

Last Supper

In honor of next Sunday (Palm Sunday) I present to you a little riff I did in 2007 from my church's pulpit on Palm Sunday:

As a confirmed humanist and nonbeliever in any deity, and as someone who has doubts about the very existence of Jesus in history, I felt that I would have some deep, meaningful remarks to share with you on the subject of bidding goodbye at the Last Supper.

I don’t know.  Maybe it’s because it’s April Fool’s Day as well as Palm Sunday, but all I keep coming back to is Father Guido Sarducci.  You know Guido Sarducci?  He’s a character from the old Saturday Night Live show, the “special Vatican correspondent” on their fake news segment.  In 1975, Father Sarducci did a bit where he went looking for holy relics from the Last Supper for the Vatican’s collections, but all he could find ... was the check from the Last Brunch.

“Twelve-a bagels and-a lox, twelve-a cheese omelets, twelve-a coffees.

“One-a soft-boiled egg.  One tea.”

And on the back of the check, you could see where they had divided up the check equally.  “Very un-a fair to-a the guy who had-a the tea.  Gee.  I wunner who that was.”  Father Sarducci’s moral was, “When you’re in a group, always order the most expensive thing on-a the menu.”

But that did get me thinking, finally, about the Last Supper.  I figured if I could suspend my disbelief long enough to laugh at Guido Sarducci, I could certainly suspend it long enough to consider the question of “What if the Last Supper was real?”  I mean the whole package:  Jesus’s goodbye, Judas running out to betray him, the bread and wine, “Do this in memory of me” -- everything.  I did have to try HARD to suspend my disbelief.  Disbelief is one of my best things.  I was the kid that the nuns were always whacking with a ruler for asking things like, “Why does Jesus have blonde hair and blue eyes?”  Even at 8 years old, I knew that Jesus almost certainly did not have blonde hair and blue eyes.  It was just a short hop from that to challenging Jesus’ very existence.  Doubting Thomas, indeed.

So I went to the Bible.  I found that some version of the Last Supper appears in all four Gospels.  Somehow that made it easier for me to accept the idea that it all might have happened.  And I tried, very hard, to “what if?” myself into the shoes of the men at the Last Supper.  And in spite of myself, I found myself being very moved by their situation.  To have followed Jesus, this incredibly charismatic man, and to have seen the things he had done.  To have seen him heal lepers, restore sight to the blind, cast out demons, to have seen him RAISE THE DEAD.  All of these amazing, mind-boggling things.  All the while never wavering from giving his message.  And then they were told it was all going to end.  Told that they were going to be on their own.  Soon.  How would I have felt?  I can scarcely put it into words that make sense.  I promise I am not being frivolous here.  Trekkie comic book geek that I am, to me it would have felt like Batman telling ME to take over protecting Gotham City.  Or like Captain Kirk telling me to take over command of the Enterprise.  And me without any of their skills, or knowledge, or “wonderful toys.”  Without any powers, super, miraculous or otherwise.  I don’t believe I would handle it very well.  No wonder that these men went on to behave pretty badly themselves right afterwards.  They failed to stay awake and pray with Jesus, and either ran away, or pretended not to know him when he was arrested.  But ultimately -- they really got their act together!  Enough to go out into the world and continue giving their message of love, with just their faith in the message itself to sustain them.  If the story of the Last Supper and the New Testament IS true, even a little of it, I find myself with a new respect for those men.  I understand now, I think, why the early Christians (the “TRINitarians”, if you will) called that kind of faith “the Holy Spirit” and made it the third aspect of God.  Would I have been able to do what they did?  I’d like to hope so, but I honestly can’t say.

I CAN say that when human beings go ahead with what they believe, without powers or resources, fueled only by their belief itself, that, to me, is greatness.  The true greatness of the human spirit.  I don’t attribute this greatness to the Divine, because for me, there IS no “Divine” but the greatness is no less great because it is human.  It is no less spiritual, either.  This human greatness is why I am a humanist.  It’s why I go to church.

Thursday, March 18, 2010

Some Extra Fun

Not an "essay" entry, just some weirdness that I thought was fun:  "Cold War Music From The Golden Age of Homeland Security."  Yowza!

Sunday, March 14, 2010

The Third Principle

A couple of summers ago, the Unitarian Church of Harrisburg offered a series of summer services based on Unitarian-Universalism's Seven Principles.  (For the complete list of UU Principles, check out )  At an organizational meeting of the folks who were to be involved in crafting these services, someone mentioned that our minister had each of us specifically in mind for the Principle for which we’d be helping to create a service.

I mentioned this when I got home, and my wife asked, “What’s your Principle again?”  I said, “Number Three:  Acceptance Of One Another And Encouragement To Spiritual Growth In Our Congregations.”

She burst our laughing.

I laughed too.  To be honest, acceptance is not always easy for me.  Frankly, I grumble.  A lot.  About other people.  I clench up inside and start grumbling when I see somebody driving a big SUV, not to mention ANY vehicle with one of those “W ‘04” stickers.  Or "McCain/Palin."  Or anything anti-Obama.  Acceptance is something I find myself struggling with every day.  But I DO struggle with it, because I don’t want to find myself turning into my father. 

My father raised us in an abusive, intolerant household.  Not a day went by without a slur or an epithet of some kind coming out of his mouth.  Like the character of Archie Bunker from the old TV show “All In The Family,” he was an equal opportunity offender -- he seemed to hate everybody equally.  A long time ago, I made a conscious decision.  I could be like him, or I could get out of that house and live a different kind of life.  I got out.

When I come to the Unitarian Church of Harrisburg, I come to the home I did not have when I was a kid.  When I come here, I find myself accepted for who I am, and judged only by what I do.  Here, I am not just listened to.  I am HEARD.  My personal beliefs are not challenged, no matter whether or not those beliefs are shared by anybody else.  I come here and I get to meet, and be friends with, and listen to, and share with:  Pagans and Buddhists and Jews and Quakers and atheists; recent converts, and lifelong Unitarian-Universalists.  What a gift that is!

The Member Reflection part of the service used to deal, not with the sermon topic, but with “How I Became A Unitarian.”  They were fun and they were all different in the details, but week after week, we would hear, more often than not, some variation on these five words:  “It was like coming home.”

Robert Frost said, “Home is the place where, when you have to go there, they have to take you in.”  Well, Unitarian-Universalism is the home I have to go to.  And I’m so honored that week after week, they take me in.

As far as my own personal beliefs go, well, personally, I don’t believe in God, and I don’t believe in any kind of life after this one.  But I’ll tell you this:  I do believe in redemption.  I find redemption in Unitarian-Universalism from my grumbling, from my past, from the worst parts of my self, because I share my journey with like-minded folks.  It's a gift I treasure.

Monday, March 8, 2010

The Great Goldini™

I'm counting down the days until my daughter gets her driver's license.  The daughter that I was told twenty years ago that I would never have.  Between my medical history and my wife's, we had attempted to start a family for about eight years before we finally gave up.  It was very hard.  We managed to convince ourselves that we were cool with growing old together, alone.  We'd retire early.  We'd travel.  It would be fine.  Really.

Then I got a phone call at work that I will never forget.  Megan asked if I was sitting down, and shared the news that she was pregnant.  I was floored.  After that, it seemed like everything went my way.  I wanted a girl.  I got her.  I predicted she would have blue eyes and blonde hair.  Megan thought not.  Megan was wrong.  Don't get me wrong -- the pregnancy was very, very difficult.  So much so that Megan had to go on full bed rest at 22 weeks because she kept getting premature contractions.  After Olivia was born, we were advised most strongly by our obstetrician not to try this again.  But we both agree that all the hardship Megan endured those months was utterly, completely, totally worth it.

When Olivia was a baby, I used to use all kinds of things to lull her to sleep when she was fussy.  I became a master of the Daddy Jiggle -- that gentle tiny bouncing/rocking thing men do when holding a baby.  While doing the Jiggle I would talk to the baby about all kinds of things.  My day.  Television plot lines.  Recipes.  To this day, my mother-in-law still can't get over the time she walked in me trying to get the baby to sleep by telling her how to make Bernaise sauce.  And of course I made up stories.

One of the stories I made up was called "The Great Goldini."  It became one of her favorites, and I wound up telling variations of it to my girl for years.  When she was in elementary school Olivia told me I should publish it.  I did shop it to several publishers, but I never did get an agent and I never did make the sale.  I'm still pretty proud of it, though, and I therefore present it to you here for the first time -- enjoy!

"The Great Goldini"  © 1992 by Tom Hayes

Goldini should have been a perfectly happy goldfish.  And he would have been, too . . . if it hadn’t been for his dream.  For you see, Goldini dreamed of becoming -- The GREAT Goldini, The World’s Greatest Fish Magician!!!

Every day, Goldini would practice his magic act.  But he had a very hard time of it, because fish have a lot of trouble doing magic.  Since Goldini had fins, not hands, he couldn’t exactly make a nickel disappear and then pull it out of his friend’s ear.  (Especially since his friends didn’t really HAVE ears.)

Since Goldini lived in water, making things float was not exactly magical.

Card tricks were a disaster for Goldini, because the cards always got soggy before he could really do anything.

And causing a tiger (or ANY kind of cat!) to magically appear was, of course, COMPLETELY out of the question.  And that made Goldini quite sad, because making animals appear out of nothing was the trick that he wanted to perform most of all.

But there WERE some tricks that The Great Goldini could do very well indeed.  He could make a pebble disappear completely, after covering it with a Fish Flake.

He could make the flag on the castle in his bowl magically change color.

And (this was his best trick of all!) he could turn the seaweed into a beautiful bouquet of flowers, just by waving his fin.

One day, Goldini was practicing his magic act, changing the colors on the castle flag back and forth, when the most terrible thing happened.  He glanced up, out of the bowl, and into the most ferocious face he had ever seen!  THERE WAS A CAT IN THE LIVING ROOM!  And it was reaching into the bowl!

Goldini and his friends started swimming around the bowl furiously.  “What are we going to do?” they shouted to each other.  His friends made a dash for the little castle and tried to hide inside as best they could.  But there was no room in the castle for Goldini.

“I know,” thought Goldini, “I’ll use my magic!”  First he snatched up a Fish Flake, covered a pebble, and made it disappear.  The cat didn’t even notice.

Then Goldini changed the color of the castle flag, back and forth.  The cat stopped for just a second, but then it started reaching into the bowl again.

Finally, Goldini changed the seaweed into a beautiful little bouquet of roses!  This time the cat stopped, and blinked a few times.  But then it gave its head a little shake and once again it started reaching into the bowl with its sharp cat claws.

“What am I going to do?  What am I going to do?” thought Goldini, as he swam around the bowl, trying to stay away from the claws.  “The only tricks I have left are the ones that don’t work in a bowl of water!”

And that’s when Goldini got his great idea.  “If my tricks won’t work INSIDE the bowl,” he thought, “maybe -- just maybe -- I can work them OUTSIDE the bowl.”

Goldini swam behind the roses, took a deep breath of water, and began to concentrate.  He waved his fin, and suddenly the cat’s paw lifted up out of the water.  It lifted up out of the water because Goldini was making the cat float -- in the air!  The fish hiding in the castle applauded!

“I can’t keep that cat floating up there forever,” thought Goldini.  “What do I do now?”

Then Goldini got another great idea!  He began to concentrate again.  Then he waved BOTH of his fins.  The cat fell to the ground.  “Oh no!” said the fish in the castle.  “Goldini dropped the cat!  Now it’s going to come after us again!”

Instead, though, a truly amazing thing happened.  There was a flash, and a pop, and a big puff of smoke.  And just outside the bowl appeared the biggest, scariest, meanest-looking dog that the cat had ever seen!  The dog let out a tremendous yowl, and it chased that cat right out the door!

“I did it!” Goldini said.  “I actually did it!  I made an animal appear!”

“You did it!  You saved us!” shouted the other fish.  And they all began to applaud, and to cheer -- for The GREAT Goldini, The World’s Greatest Fish Magician!

THE END (or perhaps I should say, "FIN!")

Monday, March 1, 2010

Goin' Down The Road, Feelin' Bad

The only north-south road that goes into the area I live, Colonial Road, is generally well-patrolled by our local police.  They rigorously enforce the 35 mph speed limit -- go much over 40 for very long and you will almost certainly be ticketed.  With my daughter about to get her driver's license, I am trying extra hard to be good behind the wheel.  Plus, since I travel Colonial Road regularly, I know that there is almost always a police presence and I don't need any speeding tickets, thank you very much.

And yet.

Just about every single time I travel down that road, I am tailgated.  So is my wife.  It makes her crazy.

I have undertaken an experiment in which I am traveling Colonial Road doing exactly the posted speed limit.  If it's the stretch where it's only 25, I go 25.  If it's the long stretch of intersections where it's knocked back to 30, then by gum, I am doing 30.  And under no circumstances am I going over 40 even at the bottom of some not inconsiderable hillage.  And it seems to be driving people absolutely batshit crazy.

I don't get it.  Unless every single tailgater is new to the road and has no idea that they will almost certainly be stopped for speeding, which in my area has GOT to be impossible, these drivers HAVE to know what the limits are.  And being licensed drivers they HAVE to know the dangers of riding someone's rear bumper so closely that said someone cannot see their headlights in the rearview.  And yet they persist, in daily infinite variety, to hug my trunk.  Some go so far as to pass illegally (which on the winding two-lane that is Colonial Road is INCREDIBLY dangerous) or will pull into a turn lane next to me at a stoplight so that they can roll down the window and curse at me in full road rage glory.  (This actually happened to Megan, my wife, who is a scrupulously careful driver, but you get my point.)

I think I'm going to go back to driving at around 40.  I think it'll make me less likely to be the victim of some loon with too much testosterone and a gun, while rendering unto Caesar the approximate obedience to the rules of the road that Caesar and the township require.  And maybe I'll get one of those electric smiley-face things from that can be programmed to scowl at tailgaters and flash the message "back off!" 

I try to live my life according to the Golden Rule, I really do.  I feel that it's the only ethical rule that makes perfect sense to anyone, in any culture.  But these asses who tailgate my family and me are making it very, very hard.