Monday, January 30, 2012

Dragon Babies

The Year of the Dragon has just started.  I understand that children born this year are considered by many Asian cultures to be the luckiest of children, and couples try very hard to have "Dragon Babies" during this year.  There is a miniature population boom every twelve years in order to accommodate this fantasy.

And it IS a fantasy.  It doesn't work that way, folks.

First of all, as an atheist I have to believe that any arbitrary arrangement of stars in the firmament is just that -- an arbitrary arrangement.  The universe doesn't care a tinker's damn what lights are shining in the sky when we reproduce.  Astrology is hokum.

Population booms are not.  How is overloading schools lucky?  A Dragon Baby Boom will overload educational systems that are already struggling.  Larger class sizes and fewer resources don't sound very lucky to me.  So if too many people manage to have their Dragon Babies, they may in fact be making things harder and LESS lucky for their children.  And that's just one example.

So, in the spirit of Bill Maher's "New Rules," here are some "New Resolutions" I would like to offer for this Year of the Dragon.  I hope you don't think that I am aiming these at one nation or culture or race.  I am aiming them at all of humanity.  There are people all over the world whose customs, traditions and beliefs are killing our world, our environment, and our children.  I am not partial or predisposed to especially liking or disliking any of them.

Here we go:

• Rhinoceros horns, dried tiger penises, bear gall bladders, and all other rare animal or vegetable product that appears to be roughly phallic in shape will not make you "more of a man," or restore your youth, or give you an erection that lasts longer, or better, or at all.  It's sympathetic magic at best and a sad crisis for the endangered species of our planet at worst.  It's like trying to rub money on your wallet to get rich.  It's a failure.  Resolve to leave the animals alone.  Get counseling.  Get Viagra.  But get over it, you ignoramuses.  If you have to eat something shaped like a willie, eat a carrot.  At least it'll give you some antioxidants.

• Corporations are not people.  They are not nations.  And they need to stop being treated as such in law.  They need to stop trying to act as such in practice.  They should not be allowed to nakedly pour billions of dollars into controlling governments and laws (as well as lawmakers) with their lobbies and their bribes and their mercenaries.  If the corporate world had its way, there would be no nations, only differing corporations controlled by the very rich and serviced by the very poor.  The 99 percent would be serfs in the new corporate feudalism.  Resolve to keep a middle class in this world.

• It's OK to have girls for children.  It's not OK to kill them or mistreat them or abort them or ship them out to slave labor camps or as sex workers so that you can keep trying to have a boy.  Both sexes make wonderful children.  It's not up to your son to care for you in your old age.  It's not up to your son to carry on your business or your career choice.  Frankly, your daughter will do just as good of a job of all that anyway.  So resolve to love your children no matter what gender they are, and they will love you back and the rest will take care of itself.  I promise.

• Coal power is killing our planet.  We need to get solar power on the fast track.  We need to look at every green or renewable source of energy that we can.  That means developing wind, tidal, geothermic, solar, hydrogen, whatever we can think of that does not put any more carbon into the planet's atmosphere.  THERE IS NO CLEAN COAL POWER.  It does not exist.  All of the advertising and lobbying in the world cannot change the fact that we are nowhere near having anything remotely resembling clean coal technology.  It's a fantasy at best and a bald-faced lie at worst.  If we devote the resources of our species to it, though, we can come up with clean renewable energy sources that will forever break the hold of fossil fuels on our civilization.  That is, if the fossil fuel corporations will let us.  Let's resolve to break the financial stranglehold of these corporations, because they are not altruists.  They will suck the planet dry and try to make money off of its lifeblood as long as there is a drop or nugget of it in the ground.

• "Class Warfare" DOES NOT MEAN THAT THE POOR ARE ATTACKING THE RICH!  It actually refers to the opposite phenomenon.  Right now the only class warfare I see is that of the rich growing ever richer and the poor growing ever more desperate...and the middle class dwindling into nothing.  And they are not dwindling because they are growing wealthy; they are dwindling because they are swelling the ranks of the poor.  It needs to stop, and unless we can somehow address the gross inequalities of the distribution of wealth, it is only going to get worse.  And worse.  And for the record, "Trickle-Down Economics" is as much of a myth as is Clean Coal Technology.  It's a fraud, and an excuse for the wealthy to hang onto even more of their stuff.

• And finally, get religion OUT OF POLITICS.  In my country, in your country, in every country.  No more legislation based purely on religious doctrine.  I will use abortion as an example here, but it can hold true for many, many issues:  If your religious beliefs prohibit abortions, don't get one.  Don't go to a doctor who provides them.  Vote with your wallets and your feet.  But don't shove your beliefs of when life begins or what constitutes murder down the throats of everybody else.  If we want a free society and not a theocracy, there can be no compromise on this.  Live your beliefs, but do not ask me to do so.  Otherwise you are no better than any other raving mullah or thundering evangelist preacher or proselytizing dictator.  We can be free only if we are free to choose.  If you want a particular "morality," live it; don't legislate it.  You want your daughters and wives to wear burkas?  Go for it!  But don't tell me and mine what we have to wear.  We reserve the right to wear what we damned well please.  You don't like it?  DON'T LOOK.

I have plenty more, and I'm sure I'll be back to revisit these, but in the meantime...Happy New Year.

Saturday, January 21, 2012


I am told by a very wise person (to whom I happen to be married) that most depression comes about as a result of feeling hopeless.  I can tell you, she's right.

When I was 13 years old, in 1966, I was diagnosed with Crohn's Disease.  Almost immediately, doctors began telling me to hang in there.  Hang in there, Tom, because a new treatment is literally just around the corner.  A new drug, a new idea, a new interpretation of the data, a new procedure...there was always something imminent that would immeasurably improve my life.  They were about to discover that Crohn's was caused by a previously unknown bacterium.  Once it was identified, it could be treated.  No, wait, it's viral.  Or fungal.  In any event, there's a new drug for that, too.  No, that's wrong; it's more complex than that, so if we treat you with a chemotherapeutic antibiotic treatment it'll finally be effective enough to wipe out the bugs that cause the disease.  (Side note:  I can't speak for the bugs, but that one almost left me blind before it almost killed me.)

So I went, year after year, enduring several episodes a year of abdominal pain that rivaled acute appendicitis.  Rivaled it so closely, in fact, that ER doctors repeatedly would not treat me for the blockage that was causing the pain because they didn't want to mask the symptoms of a ruptured appendix.  This meant hours -- sometimes days, honestly -- of lying there, writhing in wave after wave of acute abdominal pain, until the episode ended, usually on its own.  I was never given anything for pain, just monitored for the nonexistent rupture.

I got used to it.  I asked if I could have my appendix removed so that this would become a non-issue, but that, of course, is unnecessary surgery, removing a healthy appendix, and therefore was completely out of the question.  Better to suffer miserably 15 days a year (in pain we wouldn't let an animal endure) than have to recover for three days from "unnecessary" appendix surgery.

Finally, I found a surgeon who was willing to remove, no, not my appendix, but my diseased tissue.  Surgery is usually only a temporary fix for Crohn's because it does nothing to address the underlying causes of disease.  Crohn's just crops up again somewhere else after a while.  Mine did, but for a blessed few years, I was symptom-free and healthy enough to work again and even become a father.  My disease didn't get bad again until my little girl was in kindergarten.  Then a routine x-ray showed something fishy in my intestines that looked life threatening and I was rushed into surgery for another bowel operation.  It turned out that my doctors just didn't communicate effectively with each other.  What they saw was not a life-threatening embolism, it was the joint where I was "reconnected" in my previous surgery.  This second operation was completely unnecessary.  It was not a laparoscopic procedure.  I had an incision running from my chest to my groin, and it became infected.  The infection ultimately destroyed my abdominal muscles in places and I had to have more surgery to install a plastic panel.  Over time, this panel failed and needed to be replaced.

But I digress.  After a while, the idea that Crohn's was caused by an external organism lost popularity.  The autoimmune disease theory gained popularity.  Crohn's wasn't something I had caught, it was something I was born with or acquired through defective biochemistry.  My own system was attacking itself.  I needed to suppress the overactive immune system to control the disease and get my life back, easy peasy.

That's not the way it worked, either.  I do take massive doses of immunosuppressing drugs, as though I were a kidney or heart transplant recipient, and it sort of keeps the Crohn's under limited control, but as happened recently, the disease has a way of asserting itself, especially when I catch something like a stomach flu.  Which I do, often and easily, because I am suppressing my immune system and therefore I catch all kinds of things that a normal person would just shrug off.  So I have to take corticosteroids to suppress the inflammation caused by the stomach flu.  Corticosteroids like prednisone are great to control the disease for a short while, but being on them for any length of time starts to make me gain weight and go crazy with hyper-irritability.  They are steroids, after all.  They don't call it "'roid rage" for nothing.

So there are all these other autoimmune drugs out there.  Most of them have pretty awful side effects.  You've seen the ads on television, surely.  They all tell you to ask your doctor if Humira, or Enbrel, or Remicade, or whatever "is right for you."  Only in the fine print does it warn you that you might suffer neurological or other side effects.  My side effects were neurological and rheumatological.  I developed rheumatoid arthritis and peripheral neuropathy after the first half-dozen treatments started causing burning and aching in my joints and limbs.  I stopped the treatments, but I kept the arthritis and the neuropathy.  Now on good days, it feels like I'm standing up to my bottom in ice water.  On bad days, the water is full of piranhas and electricity.  It's also left me impotent.  (Yeah, that wasn't hard to admit at all.)

Which brings me to today, when I am exhausted and done for the day by 12:30 in the afternoon.  My blood count continues to fall, my Crohn's has been the same for decades, and the other illnesses associated with it in my "autoimmune package" (the latest theory) continue to wax and wane along with it.  When the Crohn's is bad, everything else is, too -- joint pain, phantom coldness, anemia, etc., etc., etc.

So this is all by way of saying that I have given up hope.  But I'm actually not depressed about it.

I no longer expect Crohn's to be cured or treated successfully in my lifetime.  Nobody works on cures any more anyway, because you only pay for a cure once, but you pay for treatment over and over and over again.  But I don't expect a good treatment, either.  So to my doctors I say -- I love you all, and I appreciate your time and your intelligence and expertise more than I can say.  But please stop telling me to "hang in there." Please stop telling me about the latest research or some new drug with a long name ending in "-imab" that's specifically wonderful for "people like me."  Stop telling me to hope.  Just help me to live out the rest of my life as comfortably as I possibly can.  At this point, I want a successful treatment, if one ever is developed, to come as a pleasant surprise.  This seems preferable to me to living through disappointment after disappointment after disappointment.

Thank you all, and good night.

Monday, January 16, 2012

Sorry, Folks

I'm sorry, but there won't be much of an entry this week.  I have been hit with some kind of GI bug that seems to be compounded by the Crohn's Disease.  It's hit me like a truck.  A big, big truck.  That, along with my compromised immune system and my recent blood disorders, will mean I have to put my energies elsewhere, essays this week.  Sorry.

Thursday, January 12, 2012

Just Like Alice

There's a line in Lewis Carroll's Alice in Wonderland (or perhaps it's from Through The Looking Glass) where someone says something like, "It takes all the running I can do just to stay in the same place."

I feel a bit like that.

If you've been here before, you probably know that I have Crohn's Disease, a gastrointestinal disorder which so far has no cure.  One of the many problems caused by Crohn's is an inability to absorb sufficient amounts of certain essential nutrients.  Last August it was determined that my iron saturation levels had fallen to 18%.  Without enough iron, you don't oxygenate your blood properly and all kinds of problems can occur, everything from brittle fingernails all the way up to, well, death, with lots of stuff on the scale between those two extremes.

My doctors started me on a monthly infusion of intravenous iron.  Every month I would go in, sit in a chair, and have what looked for all the world like rusty water run into my veins.  There are some risks with intravenous iron.  Too much can overwhelm your liver.  There can be fatal allergic reactions.  Luckily I suffered neither of those, but I found the iron infusions to be extremely painful.  They caused an intense burning feeling all through my body.  I was told that this can be normal for some people but I found it to be torture.

The idea was to get my levels back up to an acceptable level -- normal saturation is around 33%, give or take -- and then go back on an oral iron supplement.

After several months of treatments, I went in last week for some blood work to see how the iron was working and to make sure my liver function was still OK.

My iron saturation level has fallen to 9%.  Half of what it was before I started the treatment.

At least now I know why my fingernails are useless, why my joints hurt, why I'm so irritable, why I'm always tired, and believe it or not, why I suddenly crave chewing on ice cubes.  I'm going to go back on oral iron AND continue the iron infusions for another three treatments, every three weeks.  It's not clear to anyone why my iron levels keep falling.  Usually this is associated with bleeding internally somewhere, but if I am, we can't find it.  And I am not going to risk exploratory surgery, thank you very much.

I wish I had it in me to hope that the new combination of oral and intravenous will change things around.  I ran out of hope when it comes to Crohn's quite some time ago.  I have had cures and treatments dangled in front of me for over 45 years, and there just isn't any left.  My therapist tells me that this is why I have such bad depression, because much depression stems from a feeling of hopelessness.  But when every treatment has led nowhere at best, and into terrible side effects at worst (hello, peripheral neuropathy; I'm talking to you!) all my hope has been sucked dry.

And people wonder why I escape into comic books as often as I can.

Friday, January 6, 2012

I Must Be A Terrible Person

I must be.

One of the great pleasures in my life is making music.  Specifically, singing with the Unisingers, my church choir.  I like bringing what I can to our services and events, and making them more enjoyable for the congregation and visitors, and maybe, maybe touching someone or giving them pause or making them think.

Last night I almost quit.

A couple of years ago, our church bought a second building downtown in a depressed neighborhood.  We had been going back and forth over relocating and building on a new site to accommodate our growing numbers.  Then this "opportunity" came along, and after a close vote, we bought this 1912 brick church instead.

The place is a money pit.  It's unbearably hot in the summer, cold in the winter, and it costs a fortune to heat.  We are one of the wealthiest per capita congregations in town, and yet between our two buildings, not one of them is air-conditioned.  Money that could have been spent on improving our original space has been spent on new roof, mold remediation, asbestos tile removal, flooring, etc., etc, ad nauseam.

The big attraction of the new location seems to be taking over the community work done by the original, now-dwindling congregation.  Which is fine.  Many of our members seem called to work down there, cleaning up alleys, preparing meals every other week (and serving them restaurant-style instead of in a soup kitchen-type line), donating clothing, helping kids with homework, and so forth.  Again, this is fine. If you are called to it.

I'm not.

Last night the choir was "volunteered" by our Music Minister to prepare a meal for 30-odd people, cook it, serve it, clean up after it, and provide child care during it.  We weren't given a vote, or a choice, or an option, apart from paying $175 each to get out of it.

One of the founding principles of Unitarian-Universalism is congregational polity.  WE GET TO VOTE ON WHAT WE DO.

I didn't get to vote on anything.  I will do my share at this event, minimally, because the friendships I have in the Unisingers are ultimately of more value to me than the inconvenience of giving up one night in service.  But I want to make it clear that I resent the hell out of it.  I feel called to make music, and I want to make that music, and so I joined the Music Ministry.  I do not feel called to work in a soup kitchen, no matter how "family-style" it's made to ease the feelings of the poor and the homeless.  If I did, I would join the Feeding the Poor Ministry.  Instead, I chose to sing.

I want to make it clear that I have been dirt poor in my life.  I came within 24 hours of homelessness and lived hand to mouth in a rat-infested tenement in South Philadelphia for a couple of years.  My family had very little growing up.  My father worked for the A and P grocery store; my mother didn't work at all; we had four kids and we lived on beans and pasta and endlessly recycled leftovers, and when the mortgage money was tight, we ate at Grandma's because our parents didn't have food.  Later on, as an adult, I relocated to Philly to manage a business and when it failed, I lost everything.  I had to sell my possessions, move to the rat trap mentioned earlier, and scramble to find work during the 1970's recession.  I took what work I could find.  I went from being an office manager to cleaning toilets and waiting tables and washing dishes for cash.  I get it.  Poverty's no picnic.  That's why I left Pennsylvania for Virginia, janitored and bartended to get myself an education in library science, and bootstrapped my way out of poverty and into the middle class.  Ultimately I married, returned to Pennsylvania, and found meaningful work again before my health issues forced retirement on me.  It's not impossible, even in today's trying economic circumstances, if you have wit and determination.

Again, the people who are called to help those in dire circumstances are good people doing good things.  But I'm simply not one of them.

If anything causes me to leave my church, it'll be having this type of forced "charity" shoved down my throat.  Besides, I hate our downtown building; it's too effing "churchy" for a lapsed Catholic like me.  I walk into it waiting for a nun to smack me with a ruler.

I know I would have lost the vote if the issue had been put to one, but at least I would have been given the chance to cast one.  I wouldn't be going into this with such a huge chip of resentment on my shoulder.  There is a theory that Unitarians need to be dragged kicking and screaming into doing good works.  It's crap.  We have plenty of people who are called to do this and who are down there every day, not just in Harrisburg, but in poor neighborhoods all across our nation.  This work does not, however, fill the void for the spiritual in my soul (speaking metaphorically, of course, since I believe in neither spirit nor soul.)

I simply must be a terrible, awful person....