Friday, October 2, 2015

Autumn Anthem Antinomy

"Antinomy: a contradiction between two beliefs or conclusions that are in themselves reasonable; a paradox."  (Okay, I'm stretching the word "reasonable" here in the service of alliteration, but I'm getting ahead of the story.)

Last night at choir we began rehearsing a song called "Autumn Canticle" which is, as our choir director commented, one of those pleasant musical pieces that we can pull out of the hat when there's nothing obvious in our playbook to tie in to the theme of the sermon.  Luckily for us, choral composers have given us a plethora of seasonal songs to choose from throughout the year:  if you think about it and know anything about choral music, there are a ton of songs about Spring, Summer, Autumn and Winter out there which are relatively church-friendly.

In last night's piece, there are a couple of lines about the Lord's blessing and other such nonsense that some sensible humanist Unitarian choir director changed to "the Earth's blessing."  (And this is why I feel like I'm stretching the word "reasonable," because I find nothing reasonable about belief in God.)  We have a couple of Jewish folks in our Unitarian choir.  They are not members of the church, nor are they Unitarians or Universalists -- they just come to sing with us.  During the rehearsal for this piece, one of them muttered quite angrily, grumbling, "Why do they have to take God out of everything?"  I leaned over and whispered, "Because He isn't there."

It was not particularly well-received by the mutterer, but I frankly don't give a single crap.

First of all, I was offended by the use of the word "they" in her grumble.  I always find language that uses some form of the phrase "those people" or "you people" offensive, and this was no exception.  Secondly, if you are going to sing with Unitarians, you have to be at least a little sensitive (or at least knowledgeable) about their history.  While recent years have seen an increase in spirituality in the music and language of Unitarian church services, the fact remains that for a good stretch of our recent history -- say, the 1960's through the early 1990's -- Unitarian congregations were largely white, liberal, humanist, and agnostic or atheist.  (I myself am a large, white, liberal humanist atheist.) So probably twenty or so years ago, some previous choir director thought to themeselves, "This is a really nice piece of music.  We can do this easily.  All I have to do is change the God language."  (Well, probably the thought was more likely, "All I have to do is change the 'God" crap," but I digress.)

I regret my flip response to my fellow singer, even though it prompted a welcome chuckle from the people sitting around us, but I feel entirely justified in my bristling reaction to her use of the "they" language, as well as to her frustration with our removal of God language where possible.  I appreciate that she and others in our community value their theism, but I also feel disrespected when objections are raised to our humanism and agnosticism in the Unitarian church.  Especially when those objections are raised by people who refuse to fully join the church.  A lot of us joined the Unitarian Church because we were damaged by religion.  We are deeply uncomfortable when we find God in our language and music.  I personally take it a step further.  I find the idea of God not only to be completely unreasonable, but an active negative force in how human beings act with one another.  "Imagine no religion" indeed.  As an atheist, I sing because I like performing, and I sing in the Unitarian Church because I believe that, unlike many, they walk the proverbial walk by actually doing good work in those parts of our community that most need it without worrying about who or what might be one's Personal Savior.

I'm very happy to raise voice in song with anyone who wants to join with us.  Anytime.  Ever.  But if you're missing God in your music, well...I hear Temple meets on Friday nights.

Saturday, September 19, 2015


So I've been playing this game from the guys who invented the original "Halo" which, as you may know, became quite the juggernaut.  For the past year they have been growing this sci-fi shooter/RPG/MMOG called "Destiny."  This past week the creators sent me this:

The Legend of GLFAN2814

What a hoot.

Friday, September 11, 2015

If Kim Davis...

If Kim Davis --

-- had been a Muslim who refused to issue driver's licenses to women,

-- or a Quaker who refused to issue gun licenses,

-- or ANY of the other "[insert religion here] who refused to issue [insert taboo here]" jokes that have been bandied about since this whole stupid mess started...

...we would not be having this conversation.  She would be impeached so fast there would be a Warner Brothers cartoon Kim Davis-shaped cloud behind her desk.

Just do your effing job.

Friday, August 7, 2015

Driving in Sicily

Yah, I know, it's been a while.  Lots of personal stuff going on since April.  Including a trip to Sicily.  More on that sometime, but for now -- this is for you, future traveller.  What I Learned About Driving In Sicily:

• Stop signs and stop lights are suggestions only.  Nobody ever stops.  Ever.
• Same goes for speed limits.  If the carabinieri are not actively shooting radar and taking pictures of offenders, consider whatever road you're on to be the Autobahn.
• It is impossible to tailgate in Sicily.  For the simple reason that it is impossible to be too close to the car in front of you.  Climb on in to their trunk if you can.
• The passing lane is JUST FOR PASSING.  As soon as you pass, get out of it.  If you sense that the guy behind you wants to pass, hug the shoulder.  Do not hog the left lane.  It won't be tolerated.  As soon as you pass, get back over into the right lane.  Immediately.  Otherwise you are going to majorly piss off other drivers.  And these people have shotguns.  Just saying.
• Want to pass on a blind curve?  No problem!  People will mostly get out of your way.  Mostly.  Why not make the drive even more interesting?  So give it a shot!
• Not strictly directly related to driving, but worth a mention:  there are no toilet seats in any public restroom.  They have all been inexplicably removed.  Too much trouble to clean?  Always being stolen?  Who knows?!?
• Exit strategies are a must on narrower roads.  You never know when you're going to round a bend and find an oncoming herd of cattle being chased forward by a team of little tiny dogs.  Always know where the gaps are in the walls that are otherwise trapping you so that you can back into a field and let the cows go by.  And the tiny dogs.
(Luckily there was a gap in the wall we could duck into.  These cows meant business.)

• Having an urgent crisis of a sexual-encounter nature?  Is the Farmacia closed for siesta?  Not to worry.  Just drive right onto the sidewalk and hit the condom machine.
(Not just one machine, no -- you have a choice!)

One of the machines is clearly marked with the universal symbol of urgent need for a condom, the Playboy Bunny.  A sure sign of quality!

Have fun and -- happy driving!

Monday, April 20, 2015


I should have known better.

Re-reading the previous three entries, I sound like an idiot.  Three days.  That's how long the treatment lasted.  A treatment I can only have every eight weeks, and it lasted three days.  I'm back to the pain and to spending, quite literally, half of my day in the bathroom.  When I am able to make it that far.  I had promised myself I wouldn't feel too much hope so that I wouldn't be to miserable when, not if, those hopes were dashed.

I really should have known better.

Still, it was a bit of an education in self-inspection.  I do need to learn to define myself in a better way, and not in terms of this vile, vile illness that over the past fifty years I have come to hate more than I could ever find the words to describe.  I really am not my illness.  I'm just not sure what I actually am.  I'm working on it.

Still, I should have known better.

Friday, April 17, 2015

So What?? (Part Three)

So if you're still with me, you've just absorbed the capsule history of my past half-century with Crohn's Disease, minus many of the nastier bits, like daily life on a bad day, or the really bad results of surgeries gone wrong.  Those things are even more off-topic than the brief history I've given.

The point of all of that detail has been to show you that, in large part, I have been defining myself in terms of my illness.  I have studied it as well as lived with it, and my life has in no small way revolved around the various and varied effectiveness or ineffectiveness of the many treatments, including this latest one, the infusion of Entyvio.

Here's the thing:  granted, I've only had the one treatment, but it seems to already be working.  Like flipping a switch.  I didn't even have much of a headache, the one noted side effect (apart from a fatal brain virus, progressive multifocal leukoencephalopathy, a viral infection with no known treatment, prevention or cure.  Not kidding.)

I woke up feeling, well, normal.  Without going into way too much detail, this morning has been the first normal morning I've had in a long, long time.

Funnily enough, I do still remember what it felt like to feel normal.  I still feel normal in my dreams, but truly, I have only felt it once in actual, real, waking life exactly once in the past fifty years.

I was going to my wife's family home for the first time, to meet her mom and sisters.  I had gone to my then-doctor and begged him for something, anything to get me through the week without having an attack from the Crohn's.  He put me on Prednisone for the trip, for the very first time, and it worked fantastically well.  I woke up on the trip with no pain, no problems, no bathroom issues.  We took my wife's sister and her family to Universal Studios in California and played all day.  Saw the original Bates Motel.  Saw the Black Lagoon.  Saw the Cecil B. DeMille Parting of the Red Sea.  Saw my wife in a spacesuit from "2001: A Space Odyssey."  It was brilliant.  And it was the last time I felt like a normal person.  Until today.

My dilemma, then, is this:  If this feeling lasts (and, oh, how I hope it does!) how do I begin to define myself now?

Please don't misunderstand.  I'm in no particular rush to get my hopes up, not after having them repeatedly dashed time and time again for the past five decades.  But if this works out, well, I am no longer my disease.  I will have to reinvent myself from scratch.  I'm not sure I know how to do that after all this time.

I'm really not.  

Now What?!? (Part Two)

Side effects.  A phrase that I make fun of during the endless onslaught of drug ads that seem to always accompany television news.  ("Warning:  May cause diarrhea, stomach upset, stuffy nose, sore throat, headache, tumors, muscle pain, or death.  Contact your doctor for erections lasting more than four hours."  Why would anyone take something that can do that???)  The side effects from those monoclonal antibody treatments I mentioned last time were not well understood at the time I began receiving them.  But my disease was progressing -- by this time I had had five or six surgeries to try to cut out the disease and it kept coming back worse, and in new places -- and I was desperate to try anything.  And a lot of people were getting really good results, including a reasonable percentage of folks who were experiencing actual remission of their disease.  So I jumped in with both feet.

It turns out that a similar percentage were getting, not remission, but instead:  neurological side effects.  After about six doses I started experiencing burning in my arms and legs.  I was given benadryl prior to treatment and continued getting the drug.  This turns out to have been a bad idea.

In fairness, I should say that there is an outside chance that the damage to my nervous system may have been caused by another aspect of my autoimmune disease.  But studies began to come out of Germany that indicated that a small percentage of people receiving this medication were experiencing similar neurological side effects.  I began to feel cold, or wet, or like bugs were crawling on me.  None of this had any basis in reality, but it was very difficult to ignore.  A series of neurologists led me to the ALS clinic at Penn State Hershey Medical Center where, after several tests and a nerve biopsy, I was told that something very strange was going on in my nervous system:  I had what appeared to be ALS (aka Lou Gehrig's Disease) but in my sensory nerves, not in my motor nerves.  I would be able to walk, and move, but could no longer trust what I thought I was feeling.  I need to be really careful around hot water, for example, because I can no longer accurately sense what is and is not too hot to touch.

And so, it was back to Prednisone, for a time.

In more recent times, treatments have been getting unusual, to say the least.  There is one treatment that is based on the idea that, since Crohn's is an over-reaction by the immune system, it can be treated by giving the immune system something else to react against.  That "something" is the deliberate infection of a form of hookworm.  Another theory is that it's caused by an "unbalanced biome" -- the billions of bacteria that make up our insides.  The idea is to kill off as much of them as possible with antibiotics and then give the patient a "transplant" of feces from a healthy relative.

Both of these seem vaguely disquieting.

Then along comes this new stuff, Entyvio.  The science behind it is complicated, but basically, it says that the idea behind the previous monoclonal antibody treatment is sound; just the execution has been faulty for some patients.  Oversimplifying, it was right to try to block a chemical pathway, but the wrong pathway was being blocked.  Entyvio blocks a different pathway that seems to be directly connected to the digestive tract.  It's been in use for about a year, and so far no side effects beyond a mild headache at the time of treatment have been reported.

(Next time:  So what??)