Monday, April 20, 2015

Postscript

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??)

Cured?!? (Now What?)

I am 62 years old.  I was diagnosed with Crohn's Disease when I was around 12, so I've been living with the illness for about 50 years.  Yesterday I received the first in a series of new treatments with something called Entyviol.

You have to understand something.  When I was small, I started having severe stomach pains 30 minutes after I ate a meal.  Almost to the second.  My parents took me to various doctors until I finally wound up at a gastroenterologist in The Big City who had me take a test called the Upper GI Series.  It's the one where you drink a nasty concoction that contains barium, and a radiologist takes a series of x-ray pictures of your belly as they follow the stuff through your digestive system.  The test showed that I had severe narrowing in my small bowel, almost certainly from inflammation.  It was in a place that, when I ate, it took the food almost exactly 30 minutes to get there.  That's what was causing the pain, the fact that the food was unable to pass easily through this narrow, narrow passage.

In the ensuing years I have tried many, many treatments.  Some were better than others, but frankly, none of them ever really helped me to any great degree.  With every new treatment or medicine, I was told that the new one was probably just a stop-gap measure, but that "great strides" in treatment were being made "every day" and that there were lots of good things "in the pipeline" and that a cure was "just around the corner."

I've been waiting to turn that corner for half a century.  It has always seemed just as far away as it did when I was 12.

The treatments and medications over the years have certainly had their ups and downs.  The first one was huge doses of a sulfa derivative which was supposed to coat my insides and damp down the inflammation.  It worked poorly at best, but it did turn my fingernails and teeth and (I'm told) my bones a strange orange color.  Then research seemed to indicate that Crohn's might be caused by a hitherto-undiscovered bacteria or virus.  Treatment involved massive doses of a "cocktail" of every known broad spectrun antibiotic and antiviral drug.  There was one particular concoction that was thought to be effective.  I don't know that it did anything for my Crohn's Disease, but I know that it almost did for me.  My hair fell out and I began to go blind.  Luckily I had a superb eye doctor who realized it was the drugs that were destroying my retinas, and he had me stop the drugs immediately.  Most of the damage was, blessedly, reversed.

Steroid anti-inflammatories came next, most notably Prednisone.  It worked pretty well in the short term, making me feel almost normal for about a week.  Longer than that and my appetite ramped up to previously unimaginable levels and my weight simply ballooned up to huge heights.  This was very disheartening.  I had been the proverbial "fat kid" growing up and suffered nothing but misery from it.  When I dropped all that weight and shot up in height back in high school I promised myself that I would never be fat again if I could help it.  That was the catch.  On Prednisone I couldn't help it.  Nobody can. Plus, I became so uncontrollably irritable that it almost cose me my marriage and my family.  So Prednisone became kind of like an emergency fire extinguisher, a thing used to put out flareups and then be discarded as soon as possible.  Getting off of it involved a ridiculously slow tapering down which would take weeks, and just when I was ready to get off it altogether, I would have another flareup.

Then Crohn's research seemed to indicate that the disease was not caused by a bug, or by a sensitivity to certain foods, but was in fact an autoimmune disease, like Lupus or rheumatoid arthritis.   The body was in essence rejecting the digestive system in much the way that a kidney or heart transplant can go wrong.  So I spent the next several years taking immunosuppressants in large doses, as though I had had a kidney transplant.  Periodically we tried treatment with monoclonal antibody infusions which were supposed to block the chemical pathways that led to the self-rejection.  These had to be stopped.  Why?  Two words:  side effects.

[Next time:  now what?]


Thursday, April 9, 2015

Not My Easter


This past Sunday was Easter Sunday.  It can be a tough one for atheists and agnostics.  We can feel particularly vulnerable to the insistent beliefs of others, and they can feel particularly prickly with regard to ours.  Normally when our church seems to cater a bit more the theists and deists and Christians in our congregation I can just tune it out.  Ordinarily I would not be in any church on Easter morning, ever, except for the fact that the choir (of which I absolutely LOVE being a part!) contributes some pretty spectacular music, as a rule.  This past Sunday was no exception, with a lovely piece by John Rutter being the centerpiece, but in this writer's opinion, the rest of the service crossed a line into the unacceptable.

My troubles started during a message to the children.  After a lovely presentation by a member of the congregation as to why he has started wearing a cross -- all in "I" language, no judgements, no "should's" -- the minister took over with a story about a little boy who came into church and after sitting quietly asked, "Is God coming?"  It is, in my opinion, a very schmaltzy, sappy, chicken-soup-for-the-soul story, and I don't believe for a second that it has an element of truth to it.  You can read it here if you want to, but have some insulin ready:

http://momastery.com/blog/2015/04/01/most-important-question/

If you were unable to get through the schlock, the briefest summary is that while in the sanctuary of a church a little boy named "Ryan" asked the minister, "Is God coming?"  As the story develops, it turns out that the little boy's father has passed away and the minister says, and I quote:

"Well, my guess would be that God and your Daddy are together there [in Heaven] and that God sent me and your teachers and these friends to be here with you today.  So that we could love you for God.  I think that God loves you more than you can even imagine.  And I love you too, Ryan.  I can't believe how lucky I am to know you.  I think God sent you here for me." 

One of the children in the circle was a nine-year-old girl whose mother had committed suicide just last week.

Now, if you know anything about Unitarian-Universalism, you know that you are unlikely to hear that kind of specific "God language" in our churches, even on Easter.  And a story like Ryan's would be delivered to other adults for its metaphorical message, and NOT to children.  All children take away from this tale is that there is a God, He is in Heaven, and our beloved dead are there with him.  When another minister posted this same tale on Facebook, I commented that I was upset it had been used with our children, and that I would never want my UU child to hear from her minister that her dead Daddy was sitting with God in His Heaven.  This other minister just could not hear me, or understand why I was upset.  The usual dialogue started in the Comments section of the Facebook post, with various others chiming in, and one point I was told that my atheism is "just another form of fundamentalism" and nobody wants to deal with fundamentalism.

I have to say that I somewhat resent being called a fundamentalist.  I do not proselytize, nor do I ever force my beliefs on anyone, from a pulpit or a lay group or in social situations.  When I delivered a reflection on what it is like to be an atheist at Easter (http://www.oancitizen.blogspot.com/2014/04/happy-easter.html) it was because I had been invited to do so by the minister.  I am told that it was respectful and thoughtful and contributed a great deal to the Easter service.  As to my personal atheism, I simply live my life without an Invisible Friend (or as Douglas Adams said, I simply believe in one less God than other people do) and I try to do good because good is the ethical thing for me to do.  I try at all times to live the Golden Rule.  And I freely concede the point that some atheists can be real jerks about it.  I hope never to become one of them.

I do agree with "Faitheist" blogger Chris Stedman that the charge of atheist fundamentalism is very often used as a weapon to marginalize critique of religion and the religious.  It is used to maintain a status quo in which religious viewpoints, practices and communities are privileged over nonreligious ones.  Which they are.  And I do remember a time when a UU church could have a happy conglomeration of Christians and humanists and Jews and Buddhists and agnostics and Pagans and Wiccans and Hindus and Muslims and Ba'Hai and any other faith you can think to list, and we all agreed to disagree according to our Principles.  Unitarians live by their Seven Principles.  Number Three states that we should have "acceptance of one another and encouragement to spiritual growth in our congregations."  The idea is that there are many paths to truth, and we need to accept that another person's path may be very different from our own, but their path is still worthy of respect.  I remember a time when I could feel that going to church was going home, and I could learn from others and occasionally have the opportunity to impart some idea in which others found value.  But I have not felt this way about my own church for quite some time.  As to my atheism, I don't want to convert anybody, or convince anybody, or argue with anybody.  I just want to be accepted with respect for my beliefs.  I would like to feel accepted and respected for who I am and for what I do, and I find that this is no longer the case.  And I am uncomfortable with what I see as the current policy of attempting to better fit in with our downtown neighborhood location by seeming to be more Christian.  I find it disingenuous, not to say dishonest, and I believe we are not letting our message and our principles succeed or fail there on their own merits.

And while all this is buzzing around in my head, the minister wraps up her Easter sermon by asking the congregation to recite the Lord's Prayer along with her.  If you are not a UU, you have no idea how unutterably shocked I was.  As a Unitarian and an atheist, I have so many problems with just the first six words of that prayer (i.e, not my Father, there is no Father, there is no Heaven, and let's skip the rest while we're at it) that I had to look around and make sure I was in the right building.  If the friend sitting next to me had not also remained silent, I would have walked out right then and there.

This minister was hired by the temporary minister who is filling in for us while we find a permanent one.  I am hoping to be able to hang on until this new permanent person arrives.  I am hoping they will prove to be more Unitarian than what we currently have in our pulpit.  And, well, if they're not, it's not that far to drive to Philadelphia for the new chapter of atheist, humanist, do-good-because-it's-the-right-thing-to-do Sunday Assembly there.

You can read more about Sunday Assembly here, and if you're near one, you should go and check it out:  https://sundayassembly.com 

Tuesday, March 24, 2015

Rage Quit


I am ready to rage quit the entire effing human race.

For my friends who aren't gamers, the term "rage quit" (sometimes written as one word) means "To stop playing a game out of anger towards an event that transpired within the game," at least according to Urban Dictionary.  Anybody who has ever been tempted to throw their controller or their keyboard across the room knows exactly how I feel right now.


This past week's news was marked by both amazingly good news and tragically horrific news, and both were tainted by religion.  The good news came from nearby Mifflinburg, PA, when an 18-month old boy who had fallen into a river and was submerged for nearly two hours was revived by a skilled and dedicated team of doctors and nurses who basically refused to give up.  They were able to bring him back after 101 minutes of CPR.  Details of their brilliant achievement can be read here:

http://www.upi.com/Health_News/2015/03/21/Pennsylvania-boy-revived-after-nearly-2-hours-without-pulse/5511426950325/

When interviewed on our local CBS news, the mother of the boy thanked "the Hand of God."  Not one word, not one thanks, not even a mention of the medical team who actually saved the boy.  And as for the dozens of others who did die from drowning this month, well, tough luck, folks.  I guess the Hand of God was busy elsewhere.  And the people who spout this nonsense never, ever seem to consider for a second how their remarks might affect people who are the victims of tragedy -- that it might make them feel abandoned or rejected or worse.

The horrific story came out of Brooklyn when seven children died in a house fire.  The fire was caused by a hot plate that had been left on.  Why was the hot plate left on?  Well, the family was Orthodox Jewish and God doesn't want them to flip a switch or turn a knob on the Sabbath.  So if you want a hot meal in one of the coldest winters on record, you need to turn on the hot plate before sundown at the beginning of the holy night.  Or a light if you don't want darkness, or the radio, or whatever other modern convenience one might require.  Further details on the tragedy can be found here:

http://www.cnn.com/2015/03/21/us/brooklyn-fire-children-killed/

Apparently the same God who saved the one little Pennsylvania boy let seven kids in Brooklyn die because they're NOT ALLOWED TO TURN A F@$#!%G KNOB ON THE SABBATH.

So much misery in the world.  Warring sects within Islam.  Extremists destroying historical and archaeological treasures because they are thought to be "blasphemous."  Killings over cartoons.  Women attacked and killed for no real reason other than that they are women.  All of the back and forth in the Middle East and in all the other places where one side's God is deemed to be better, or more right, or the only truth, or whatever other inanity it might be couched in, than the other side's God.  Muslim vs. Muslim, Jew vs. Muslim, Jew vs. Christian, Buddhist vs. Who-bloody-ever.  The only people not killing each other over unprovable, unfathomable beliefs?  Atheists.

I despair of us as a race ever waking up to the truth of this misery.  I despair of us ever actually living according to the Golden Rule, treating others the way we ourselves would wish to be treated, with acceptance and tolerance for all faiths and genders -- this despite the fact that The Rule is a basic tenet of every single faith on the planet.  We are ignorant, tribal chimps.  And we are going to die as such.




Sunday, January 11, 2015

Boring Stuff



This is an essay where I'm going to vent.  It won't be about politics, or popular culture, or anything that will mean anything to anyone who isn't local, so feel free to skip this one.  It's pure selfishness on my part, buttressed by a need to get some things out of my system.

As I have mentioned several times previously, I am a member of the local Unitarian Church.  Yes, despite being an atheist, I've kept membership in a church for the past 30-plus years.  Back when I joined my first Unitarian congregation, the Unitarian-Universalist church was very different from what it is now.  The one I joined, the Thomas Jefferson Memorial Church, Unitarian-Universalist, in Charlottesville, Virginia, was primarily a congregation of atheists, agnostics and humanists.  As were many, many other Unitarian congregations.  We had a complement of pagans and Wiccans and some other folks who would normally be considered a fringe element in any other church, but Unitarians have always been a pretty welcoming bunch.  I used to liken them to Hindus in that there was always an element of "there are many, many paths to Truth and yours might be one of them, too."

The one thing you used to hear over and over again from people new to the church and to Unitarianism was that, when they first arrived, they felt like they had "come home."  There are (or used to be) entire Sunday services based on the theme of "Coming Home."  I frankly felt that way myself.  On my first visit I heard a sermon by retired-chemist-turned-minister Rev. Charles Howe that knocked my socks off.  It was all about how doing good work was more important than which version of the Bible you believed was "The Truth."  I got involved and soon thereafter signed the membership book, and I have considered myself a Unitarian ever since.

Unitarians are the butts of a lot of jokes (thanks, Garrison Keillor!) but the targets of those jokes, the Unitarians who decide everything by committee; who, when threatened by the KKK, have a Question Mark burned on their lawns instead of a cross; who are terrible at singing hymns because they are too preoccupied with reading ahead to see if they agree with the next line...you get the idea.  Those Unitarians are pretty much extinct these days.  The church has, over the past couple of decades, returned more and more to its Protestant roots.  There is a lot more mention of God and Jesus these days, despite a fair number of diehard humanists and atheists still in attendance.  I think we all go mostly out of habit, and because the alternatives remain far worse.

I have no patience for God or Jesus in my Sunday mornings.  I can barely tolerate euphemisms for prayer ("meditation") and some sort of Almighty ("the Spirit of Life.")  I strongly believe that belief in any deity is misguided and is the source of the majority of the world's troubles, and I hate to see my church pay even the smallest lip service to the concept of a Higher Power.  As far as I am concerned, there isn't one.  As I have said many times, I can fully appreciate the beauty of the Universe as it is without feeling any need whatsoever to attribute its lovely structure to An Architect.

Again, if you've stuck with me this far, you've probably read previous words about my own church's acquisition of an old brick cathedral in one of the worst neighborhoods in my city.  You may also recall that I was one of those who disagreed with the acquisition of this property and voted against it in no uncertain terms.  Despite a divided congregation (the vote on whether or not to buy the building was something like 52% in favor and 48% against) the church went ahead with the acquisition.  The purchase ultimately irrevocably divided the church, cost us our minister, and caused the departure of a big percentage of our membership.  We went from being a rising star in the Unitarian universe to barely getting by with maybe 80 people in attendance on any given Sunday.  And that's on a good week.  The main problem is with the neighborhood and with its lack of convenient parking.  As to the neighborhood, there have been two murders on our property since we acquired the building, and many, many more in the immediate neighborhood.  It's mostly drug dealers killing other drug dealers.  So far nobody from our congregation has been involved in any violence bigger than having their hubcaps stolen.  At choir practice we are periodically reminded that when we are finished we should head directly to our cars and NOT congregate out front chatting, because it's not safe.  This is irksome, but a necessary practicality.  It bothers me, though, because the choir is pretty much the vast majority of my social circle.

Which finally gets me to the point of this tirade.  The church leadership has been trying to increase its appeal to the neighborhood by making its message more Christian-friendly.  We have Bible stories for the kids, frequent mentions of (and appeals to!) God from the pulpit, and generally a more theist slant to the message.  I have been told by those in authority that in order to appeal to the locals we have to couch our message in terms that they can identify with, or at least understand.

I find this at best to be disingenuous.  To be completely truthful, I find it dishonest as hell.  (A place I also do not believe in.)  We're behaving in a way that seems self-destructive to my mind.  You can't misrepresent your message in order to "get people through the doors" and then try to slip the actual message to them once they're in.  It's not right, and it's behavior that will kill your soul.  It's certainly killing mine.

We currently have a temporary minister, an "interim minister" assigned to us by the Unitarian Universalist Association whose job is to shepherd us  over a two year period to a place where we are ready to find a full-time, permanent minister of our own.  When some staff resignations freed up money in the budget, the interim minister took advantage of the way our charter is written to hire a second minister for the downtown church.  This is all perfectly legal and above-board, and when we do get a full-time minister, he or she will find themselves with a permanent Assistant Minister who is already in place.

Unfortunately, I have not connected with the new Assistant Minister at all.

She seems to subscribe fully to the idea that we have to be more "conventional" in our services in order to appeal to and draw in the locals.  She is the one who started the Bible story nonsense in the Children's Message.  Her services so far, at least for me, have been sloppy and ill-planned, since she often seems to work "without a net" so to speak -- no visible notes or script for a sermon, just talking off the top of her head.  For the life of me I could not tell you the theme or message of a single sermon she has delivered.  Services start late and run overtime, largely because of too many hymns and old-fashioned nonsense like an opening processional.  I have never been to a Unitarian service that felt so...Episcopalian.

So I find myself on the horns of a dilemma.  On the one hand, if I left the church I would have precious little social life left.  When the church essentially divided (we are technically one congregation with two locations, but there is very little crossover between the two) the vast majority of the people I love decided to stick with the downtown location.  Since for me, the most important aspect of any church is its community, I followed that community and sing downtown with my friends.  On the other hand, I get absolutely nothing from my time there on Sunday mornings.

Let me repeat that:  I get absolutely nothing out of the time I spend in church on Sunday mornings.

This was never the case until the past couple of years.  I could always find some nugget, some idea, some form of mental or even, dare I say it, spiritual fulfillment from my Sunday morning.  Now, though, if the choir isn't singing, I just stay home.

I still believe that my church has great potential.  I think that it experienced its near-meteoric growth a decade ago for two reasons:  a great minister, and great music.  I truly think that lightning could strike twice.  We still have, if I do say it myself, a kick-ass choir.  People do come for the music.  And I hope that we are well on our way to hiring a new minister who can pick up the pieces and put us back on track.  We were one of the great Unitarian church congregations once, and we could be again.  But not if we continue to water down our message in a misguided attempt to make it more palatable.  No good can come from misrepresentation or dishonesty, no matter how subtle or well-intentioned.

So, I'm not sure what the best way is to proceed.  I guess I could talk to the Interim Minister about my feelings, since he hired the new person.  Or I could wait until the new full-timer is hired.  Or I could hang in there, but withhold my financial support, telling the Powers That Be why I am no longer giving money to the church.  (That would certainly get somebody's attention; my family is one of the top donors.  Not bragging, just sadly commenting on how much financial support has eroded since the second building was acquired....)  I just don't know what to do.  I really don't want to give up my friends, but I also don't want to spend my Sunday morning resenting the fact that I have to be there and counting the minutes until I can safely leave the neighborhood.

I hope either I, or the church, finds our way, and soon.