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Killed By Fear (Doctor Phobia and the C Word)

The Fredstock 2 benefit concert Erin and I went to Friday night hit me where I live for another reason besides a love of music: The event was also about raising awareness about colorectal cancer. I’m a high-risk case.

Mood music:

I never knew Fred Ciampi, the man the benefit is named for. He passed away this winter from colorectal cancer, and the benefit was also meant to help out his wife, Claudia DeHaven Ciampi-Biddle. (Donations can still be made by writing to Claudia@snowlionyoga.com. Please put Fredstock Donation in the subject.)

When I saw his picture, my first thought was, “Man, he was young.” In fact, he died just shy of his 40th birthday.

The other thing that came to mind was that it could just as easily be me in the obituary. The childhood Crohn’s Disease that reduced my colon to a tube of scar tissue also left me at a much higher risk for colon cancer.

It’s something I’ve had to live with since 1990, when I got a letter from my then-doctor recommending I get regular colonoscopies to monitor for possible colon cancer. As a 20-year-old I balked. You never really worry about cancer at that age. But I had the test anyway.

It was a good thing I did.

They found hundreds of polyps throughout the colon. These weren’t — and aren’t — the type of polyps that they typically worry about. These are more like skin tags. Specifically, they are part of the scar tissue.

The doctor was pretty stern with me. “You can’t wait five years between colonoscopies,” he told me. “This stuff can be dangerous.”

Naturally, I went eight years before the next one, and in those years I did some of the most vicious binge eating of my life. Each year that passed made me more fearful of what was going on inside.

I got the test done in 1999 because of some bleeding. Everything was fine, and I’ve done much better at getting a colonoscopy every other year to keep an eye on things. So far, so good, though I’m about a year overdue for the next one. I better make that call this week.

Perhaps I’m a fatalistic personality, but I won’t be a bit surprised if colon cancer is found in me at some point. I haven’t had a Chrohn’s attack since 1986 and I know my luck could run out sooner or later.

But I don’t really fear it like I used to. I figure I get the test frequently enough that anything they find will be at an early and treatable stage.

If I’ve learned anything from all this, it’s that fear and embarrassment is the deadliest risk of all.

People are too embarrassed to get a colonoscopy because of how the procedure is done. No one has to know about it except their doctor and maybe a couple family members. But they avoid the test anyway because they still find it embarrassing. Then they end up dying of colon cancer a few years later. Not in every case, but in many.

Embarrassment is a powerful thing. It keeps a person from seeing things as they really are and keeps them from facing their demons.

It’s not always bad to be embarrassed. God put the emotion in us for a reason. If we’re a jerk to someone or we get caught doing something unethical, we should feel shame.

But we shouldn’t feel shame over an illness and shouldn’t be embarrassed about getting help, whether it’s for colon trouble or the mental illness and addiction at the heart of this blog.

I’m not saying Fred was like that. Like I said, I never knew him.

But I know a thing or two about fear, shame and embarrassment.

Don’t let those things keep you from letting the professionals help you.

OCD Diaries

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Facebook Changed My Social Dysfunction

Going to see The 360s last night drove home an interesting point for me: The Facebook world and the real world are indeed two different places. And it may have made my social dysfunction worse.

Mood music:

First, I want to thank The 360s for a great show last night. When I leave a show with my ears ringing, feeling like I’ve been kicked in the gut, I know I’ve had a good, healthy dose of rock n roll. I need that sort of thing every day.

Here’s what was weird for me, and it’s nobody’s fault, really. Heck, it’s not even necessarily a bad thing: I’m connected with all the band members on Facebook. Seeing their status updates every day makes me feel like I really know them. But in person, we’re strangers.

I approached the band members, who looked at me puzzled, trying to figure out who I was. Once I introduced myself, they knew who the strange guy in front of them was and they were very friendly. Some of them read this blog, but in real life, in a dark club, I don’t really resemble the cartoon logo people associate me with. And outside of Facebook, we’ve never really talked to each other in a room.

And so I come off as the typical hanger-on at rock shows, the guy in the room who sucks up to the band so he can tell people he knows them. That’s not my goal, but I can see how I might come off that way. I can be a real train wreck sometimes.

In a way it’s kind of cool, because it goes to show that you can’t replace the real world with something found in cyberspace.

That’s actually a relief, because I sometimes worry that if I get too good at the social media thing, I’ll forget how to function when face-to-face with someone.

Actually, let me correct that: I’ve never really understood how to function when face to face. And that brings me to the main point of this post.

Even though I can comfortably give a talk in front of an audience and share my most embarrassing truths in writing, I remain socially dysfunctional.

I lose the ability to distinguish what I see in the people I share a room with from people I share a Facebook page with. So, once off Facebook and back in the real world, I forget how I should act around people.

I’ve gotten better at this stuff since crawling out of the black hole that is OCD and addiction. But I suppose I’ll always be fighting the battle at some level. And that’s OK.

My social awkwardness didn’t get in the way of what was a great night out with my wife. I had fun, and look forward to the next concert. I also didn’t need to feed my addictive side with binge eating or booze to get through the night. That’s some pretty good progress.

I just need to work on my real-world people skills. But then doesn’t everybody?

OCD Diaries

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You CAN Revisit Your Past (A Trip to Revere)

Erin had an audio conference to record Thursday morning, so to ensure a quiet house, I put the kids in the car and went to Revere Beach, the scene of my tumultuous, painful, angry yet beautiful upbringing.

I’ve written a lot about Revere in this blog. How could I avoid it? But I’ve been short on photos to show you. I fixed that problem with this latest journey back in time. Sean and Duncan had a field day picking up shells and jumping in the water — things I took for granted at their age.

The most striking thing about visiting my old home is that as a whole, Revere Beach is a far more beautiful place than I remember growing up. Part of it is because there was a massive renovation of the beachfront in the 1990s. Pavilion roofs ripped off in the Blizzard of 1978 were replaced, sidewalks were extended to the entire length of the beach and, most importantly, the Deer island sewage treatment plant has cleaned up the ocean considerably.

Here’s the rocks behind Carey Circle, just footsteps from my front door. I used to hide here during moments of anger and depression, chain smoking Marlboro Reds:

The house on the right is where Sean Marley grew up. My house was two doors down. During my teenage years, I spent more time in the Marley house than I did in my own. The house on the left is where Sean moved in after he and Joy got married. It’s also the house where his life ended:

My house, dead center, as seen from Pines Road, across the street:

A lot of dead jelly fish used to wash up on the beach. Here’s the private part of the beach, where the bored among us would blow up the dead fish with firecrackers and, on the fourth of July, the bigger explosives.

 This is the first house after Carey Circle, where the Lynnway becomes Revere Beach Boulevard. Me and my siblings used to hang out in this house in the 1970s and play with the kids who lived there. Their father allegedly had ties to the mob and, sometime in 1978 or 1979, he was gunned down in the kitchen. It was believed to be haunted after that, but I never really took that seriously. The house did creep me out, though:

The trip ended with lunch at Kelley’s.

A good trip, I’d say.

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Boredom: An OCD Case’s Worst Friend

Last year I wrote about how boredom is one of the most dangerous things an addict can encounter. It’s equally true for someone with OCD.

Mood music:

The mood music today is especially fitting for the topic. Like the addict who is bored, the OCD case who is bored gets an itch and restlessness that causes you to search and destroy.

I’m a street walking cheetah
with a heart full of napalm
I’m a runaway son of the nuclear A-bomb
I am a world’s forgotten boy
The one who searches and destroys

The opening lyrics apply. For the OCD sufferer, the heart full of napalm is the uneasy, anxious feeling that comes over you in the absence of activity. It makes you search and destroy — in my case, I search for things to worry about. The root of the problem is an OCD sufferer’s inability to live in the present.

This shouldn’t surprise readers of this blog. I’ve described it before. OCD is very much about worry spinning out of control. If it’s something routine, like sending an editor a flawless story, it’ll eat away at a lot of precious time. I used to write a story, read it back aloud, polish it, read it aloud again, then I’d still be afraid to file it for fear that it wasn’t absolutely perfect. I got home late many nights and lost a lot of sleep because of it.

When it was about health, I’d make myself sick for real by fixating too hard on what MIGHT happen. That’s when the anxiety attacks would come. In 1991, after a colonoscopy to monitor the Crohn’s Disease, I was informed that my colon was covered with hundreds of polyps — more scar tissue than polyps, but something that had to be kept an eye on. I was advised to get a colonoscopy every year to ensure it didn’t morph into colon cancer unnoticed. Good advice. So I let more than eight years pass before a bout of bleeding forced me to get one. Until then, I wasted a lot of time in fear that every stomach cramp, however small, was colon cancer. I’d spin it in my head repeatedly, rationalizing why I shouldn’t get the test. Just following doctor’s orders in the first place would have saved me a lot of over-thinking. That was clear when I had the test and found out everything was fine.

I can remember being a kid, always daydreaming about the future: what I’d look like and how cool my life would be if I were thinner, the clothes I would wear, the girls I would date and the music I would write.

As I sat in my basement pondering such greatness, I’d be binge eating, drinking and smoking and wasting the moment.

I’ve spent too much time thinking about plenty of other things. It ages you.

Boredom is a major troublemaker because left with nothing to do, you start thinking about everything that can possibly go wrong with your life. I would get into the negative thinking described above during the busiest of times. You can imagine, then, what happens inside my head when I’m bored.

It leads to the addictive behavior I described in “Boredom: An Addicts Worst Friend.”

I’m better at living in the present than I used to be.  But I still make sure I’m busy at all times. The alternative ain’t pretty..

Besides, there’s joy to be had in the kind of tired you feel after a day lived well.

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The Brady Bunch Offended Me

Sherwood Schwartz, creator of “Gilligan’s Island” and “The Brady Bunch,” has died at age 94. Naturally, I’m remembering how I hated “The Brady Bunch” for giving me a fake picture of family life.

Mood music:

I hated “The Brady Bunch” because it made me so angry that my own family was never like that. But then no one’s family is really like that.

I did like the movie adaptations that came out in the 1990s because the films mocked the feel of the original series. You had the family living in the 1990s but acting like they were in the 1970s. Some elements of the family were modernized, though: Alice the housekeeper and Sam the butcher get it on at one point.

When Mike asks Sam what he’s doing there in his robe in the middle of the night, rummaging through the fridge, Sam says, “Oh, just delivering some meat.”

Obviously, Schwartz’s point was to create the perfect picture of family, not because it reflected reality, but because it would be nice if it were reality.

Now that the chip on my shoulder has been filled in by time, experience and hopefully a little wisdom, I see “The Brady Bunch” as a nice idea, however unrealistic. In fact, the escape from reality was a welcome relief to a lot of people whose families were miserable and ugly. A little relief helps you regroup and carry on.

My problem is that I’ve always had a tendency to overthink these things.

I never took issue with “Gilligan’s Island.” As absurd as the show was, I’ve always liked the theme of people with nothing in common getting thrown together — forced to become a new family of sorts in order to survive.

I admit without shame that my favorite episode is the one with the Japanese sub pilot who didn’t realize the war was over; the one who complained that the Chinese stole the idea for water torture from Japan.

Despite how the younger, angrier version of me felt, the older me believes Schwartz did a lot of good for a society that tends to stew in its own, stinking, cynical juices.

Rest in peace. I hope you find the folks in Heaven to be something like the characters you created.


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A Happy Memory From A Difficult Time

It’s sometime in October 2008. I’ve just given given up flour and sugar to get control over a binge-eating addiction.

Mood music:

I’m irritable and sick, going through all the aches and pains that surface when toxins start to drip from the pores.

I’m coming up the stairs from work, anxious to get all the chores that await me over with.

I open the door to find Duncan sitting in his chair at the kitchen table.

He’s wearing a bib and a bowl of soup is in front of him. It’s button soup, he tells me. He made it in school (Pre-K) after being read the book of the same name, in which “Daisy tricks her stingy Uncle Scrooge into making enough soup for the whole town–using just one button.”

“Daddy, have some button soup. It’s on your diet!” Duncan says as I come into the room.

He’s got that big, gaping smile of his, excited as hell because in the magic of the classroom, he discovered something his Daddy could eat. He knows his father needs encouragement, and he’s eager to deliver.

When you really become serious about kicking addictions, God puts the right people in front of you to make the cold turkey period a little more bearable. I truly believe that.

It’s the Grace that helps you move those one, two or three steps at a time.

On that gray, gloomy afternoon, Duncan was there.

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OCD and Crohn’s Disease Linked?

A fellow OCD chronicler sent me two articles suggesting a link between OCD and Crohn’s Disease. I have both and several people have asked if I see connections between the two. This is my attempt at an answer.

Mood music:

From the beginning, I’ve tied the two diseases together in my journey. At various times, one disease has played off the other, sending me to the depths of insanity. Both certainly contributed to my developing a binge-eating disorder and other kinds of addictive, self-destructive behavior.

During the childhood Crohn’s flare ups, a wire was inserted through my neck and chest to send nutrients to my stomach. That way, the lower digestive zone could have time to rest and heal. Not being allowed food or drink when all the other kids on my floor were getting their breakfast, lunch and dinner fucked with my head and led to binge eating as the addiction I would battle most. Getting junk to binge on was a major obsession, one of the loudest OCD triggers of all.

Whenever I would feel sorry for myself, I pictured an enemy holding a voodoo doll of me, stabbing it in the gut repeatedly with a needle. Was the Crohn’s holding the doll, making it do the same motions over and over again?

One article suggests something like that. It’s in Psychosomatics,
The Journal of Consultation and Liaison Psychiatry under the title “Abrupt-Onset Obsessive-Compulsive Disorder (OCD) in a Child With Crohn’s Disease.” It starts with a letter to the editor, which says in part:

Johnny, a 9-year-old boy with Crohn’s Disease, experienced the abrupt onset of intrusive, ego-dystonic,sexualized obsessions (fears that he would lift up the shirtsof random women to feel their breasts) which resulted in long nightly confessions to his mother. He was also overly scrupulous and worried that “the mistakes I’ve made” would result in harm to his family and friends. 

The authors respond with this:

Patients with inflammatory bowel disease are frequently describedas obsessive, rigid, and compulsive. Burke et al. found that OC symptoms in childhood IBD did not differ significantly fromthose found in children with cystic fibrosis, suggesting thatsymptoms were related to the demands of chronic medical illness,rather than IBD itself. The pathogenesis of IBD is not fully understood; it may be related to an abnormal mucosal immune system or specific defects in cellular and humoral immunity.

The other article is in The Scientist under the title “Equations that Spell Disaster.” It starts with a portrait of Hurricane Katrina. The storm’s landfall and the aftermath was the perfect calamity because it hit an area loaded with vulnerabilities: weak infrastructure, poor lines of communication, and a dysfunctional emergency rescue system.

“These conditions coalesced to produce one of the worst human catastrophes in recent US history,” the article said. “In a similar way, complex diseases result from a series of events that may not amount to much when considered one by one, but together, coalesce into a perfect storm that spells disaster for a particular organ or system.”

Is that how it went down for me? Perhaps.

But for me, the scientific evidence is beside the point. The things that have happened to me can’t be erased, but it’s more important at this stage of my life to walk away from the wreckage a better man with a better appreciation for the life I have, warts and all. All that matters is the present and the future. The past is something you can’t change, so me obsessing about how I got the way I am is pointless.

There used to be a place for that. When I first started going to a therapist on the long path to an OCD diagnosis, I spent all my time picking through the wreckage of where I came from in search of answers. It was important to do so. But once I found myself, there was no longer much reason to stick around.

So why am I bringing it up here? Because the articles are useful to those just beginning to deal with one of these diseases.

The science can’t change my past, nor should it.

But it can lead to better treatments for people going forward.

OCD Diaries

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My Changes, Your Frustration

Recovery over addiction, fear and anxiety has been a miraculous, beautiful thing. I thank God every day. But when a man changes, a whole new set of problems arise.

The changes have been especially challenging for Erin. I’ll let her explain it from her perspective in a future guest post, but I can tell you this much: It’s a confusing, frustrating thing when your spouse acts one way for a bunch of years and then, suddenly or not so suddenly, ceases to be the person you married.

I’d like to think I’m still the guy she married in the most fundamental ways. My heart and most of my passions haven’t really changed. But as the priest who married us said: “You marry the person you think you know, then spend the rest of your life getting to know each other.”

As far as that goes, I’ve been a moving target, tough to nail down.

I hated traveling. Now I like it.

I was terrified of any activities that required leaving the house outside of work hours. Now I’ve filled my time to the brim with involvement in one group or another.

I used to eat everything I could get my hands on. Now my diet is pretty buttoned down.

I used to clam up during arguments. Now I argue back. Only I do it in fits and starts. Inconsistencies in how I argue? That alone must make her wish she had a gun sometimes. Or at least a sturdy, metal ladle.

I used to be a neat freak. Everything had to be just so. Now I leave stuff lying around the house.

I forget to take a shower sometimes. But I’ve always had that habit. Some things never change.

Sounds like a frustrating ball of slime and nails, doesn’t it?

Well, it is. But I’ve put a lot of work into finding the middle speed. Just because I CAN do all the things that used to scare me doesn’t mean I should. I’ve also tried hard to be better at conversation. On that I remain inconsistent to the point of madness.

But despite all that, we love each other. When love is real and you recognize that it takes constant care and feeding to keep growing, you do whatever it takes to stay on top of it. You fail once in awhile anyway, but you get up and try again.

And by the Grace of God, the love endures.

I say all this because I know someone whose husband is working on all the issues I’ve had to work on. She’s probably wondering how the hell she’s going to get through this.

Like I said, that’s a story Erin will have to tell. I only know how I feel and what I’m willing to do.

I also know there can be a lot of happiness between those periods of frustration.

So don’t worry about it too much. The biggest obstacle is the fear of change. Once you put that behind you, anything and everything is possible.

That too can be bad. But it can also be very, very good.

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And The Sea Will Save You

When I wrote a post called “Summers of Love and Hate” last year, the theme was a childhood mixed with joy and rage against the backdrop of Revere Beach.

The memories are still stained with sorrow. But, truth be told, the location of my upbringing is one of the things that saved me.

Mood music:

The sea could be terrifying, especially in the winter. The Blizzard of 1978 is my clearest memory of that. But when calm, it brought be back from the brink every time.

This quote from JFK captures my own feelings about the sea as healer and helper:

I really don’t know why it is that all of us are so committed to the sea, except I think it’s because in addition to the fact that the sea changes, and the light changes, and ships change, it’s because we all came from the sea. And it is an interesting biological fact that all of us have, in our veins the exact same percentage of salt in our blood that exists in the ocean, and, therefore, we have salt in our blood, in our sweat, in our tears. We are tied to the ocean. And when we go back to the sea — whether it is to sail or to watch it — we are going back from whence we came.

I’m thinking about this after reading some Facebook status updates from an old friend I grew up with in the Point of Pines. She was messaging from Cape Cod, where her family has gone for some rest. It’s a painful time for them, because a friend has been found dead, allegedly murdered at the hands of her ex-boyfriend.

“On the cape awaiting the rest of my children and my honey. We need to regroup, relax and help my girls start to heal. Hug your loved ones, tell them you love them everyday. Life is hard.”

Losing close friends and family is hard. I’ve been there three times. They are doing the right thing, though, going to the ocean for solace.

During the worst moments of my younger years, the ocean was an escape route within feet of my front steps. I would sit on the rocks and think things through. I would walk from the Pines all the way to the other end and back.

The process would usually take about 90 minutes — enough time to process what I was feeling. It didn’t necessarily make me happier, and much of the time thoughts just swirled around uselessly in my head.

But I always came back from the beach a little calmer, a little stronger and ready to deal with whatever I had to face.

You could say the ocean would speak to me, talking me off the ledge.

I live away from the coast now, in a city sliced in half by the Merrimack River.

The river has an equally calming effect on me, and I walk along it every chance I get.

But every once in awhile I go back to Revere or a closer place like Newburyport or Salisbury to get my pep talk from the sea.

I hope my old friend and her family get what they need from the sea this time. I suspect they won’t walk away with any less pain than what they feel right now. But I have no doubt they’ll leave there with the added strength to get through the sadness.

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Not What God Wants Me To Be, But Not The Person I was

The title of this post is a popular saying among those who use the 12 Steps to bring their addictive behavior to heel. It’s a good line to keep in mind when you’re ready to lose patience with yourself and slip into self-loathing.

Mood music:

http://youtu.be/jYpydtdlWxA

There’s a lot about myself that still has to change. I still get angry too easily. I still get self absorbed. I still give in to OCD thinking and actions, even when I know better. I still suck at saving money. Little problems still turn into big crises in my head.

But I don’t see a reason to beat myself over it, because I used to be much, much worse.

A temper today involves angry thoughts and self pity. As a young punk a temper meant punching dents into walls (I lacked the muscles to make a hole), flipping off people on the highway for cutting me off or, worse, getting touchy when I cut them off. It also meant unleashing a torrent of verbal vitriol.

Getting self absorbed back then meant spending what I wanted, eating what I wanted and making the decisions I wanted with no regard for anyone else. I still fall into that behavior, but I catch it more quickly than before and correct myself as much as possible. Doing service has been good for me because it gives me fewer opportunities to stray. Being a husband and father has helped, too.

Giving into OCD today means I may go on a cleaning spree at the moment I need to be doing other things. It means I may check and re-check my laptop bag to make sure the machine is inside, dooming myself to a longer, more traffic-laden commute in the process. It means I’ll occasionally run short on patience. But back then, it meant being blinded to everything around me by obsessive worrying about things that in hindsight were a lot of nothing. Which, in turn, led to the selfish behavior.

I bring this stuff up because everyone has a cross or six to carry on a daily basis, and it’s easy to give in to the worst kind of thinking and write yourself off as a failure.

In times like this, it’s also helpful to remember what Clarence the angel scribbled in the book he gave George Bailey at the end of “It’s a Wonderful Life” — “No man is a failure who has friends.” I used to think I had no friends. Then I realized the problem was that I was ignoring my friends in favor of isolation.

We all have something to offer and to live for. We’re all screw-ups — nothing like the people God wants us to be.

But if we’re just a little better than we once were, that’s huge.

I’m going to keep working on being who God wants me to be. It’s an almost impossible task, because how do you ever really know what God wants you to be (until you’re dead and he tells you directly, anyway)?

He always leaves clues, though. So instead of feeling sorry for ourselves we can simply do the best with the clues we’ve got.