I tend to get a lot of mail from people who read this blog, particularly the stuff about the rougher parts of my life. God Bless ’em, because they’re good people who want to buck me up. But I think they misunderstand where I’m coming from sometimes.
There are days when my posts cross over to darker territory, especially when a wave of depression or OCD moment hits. I also do a lot of soul searching here, which is part of what I started this for. Some see those posts and tell me I’m way too hard on myself.
When too much of this happens, I need to come on here and tell you why you don’t need to worry about me or express sympathy. This time, I got a nice, shiny five-point manifesto to make my point:
1.) If I write about something bad that happened to me or something I’m feeling bad about, it’s never, ever a cry for pity. I approach my experiences from the point of view that EVERYONE has bad stuff happen to them and that EVERYONE screws up. I’m nobody special. But many times I need to expose my raw feelings to make a point. That’s what writers do.
2.) This blog is all about me making an example of myself. The way I see it, I’ve learned a lot of lessons and developed a lot of coping skills every time I’ve failed. If I don’t admit to my own failings to show where I used to be and where I’m going, the reader won’t walk away with anything useful.
3.) When sharing a bad mood or experience, the goal is to tell others they’re not alone. A lot of people with depression and addiction suffer in silence, thinking they’re different from everyone else in a bad way. The more people come clean about their own struggles, the more those sufferers can see that they’re not so hopeless and strange after all. In other words, some of the stuff readers try to buck me up over are based on my attempts to buck other people up.
4.) Never think for a moment that I don’t love who I am and what I have. It’s easy to read the darker posts and see a guy who loathes himself and curses his lot in life. But these posts aren’t meant to be that way. I still have my struggles and always need to be better than I am, but I also appreciate who I am, where I’ve been and what I’ve learned. And I know when I look at my wife and children that I’m THE luckiest guy on the planet.
5.) Writing all this stuff down is excellent therapy for me, too. Some people may be taken aback by some of the stuff I come clean about here. But in doing so I clear my own mind of the obsessive thinking that can hold me back. Then I can move on to the next thing. That doesn’t mean I don’t get locked into OCD moments, but spilling it here makes things better.
So you see, my friends, there’s no need for sympathy. I’m doing just fine.
But I am grateful for your kindness and good intentions.
Yesterday was the 25th anniversary of Metallica’s “Master of Puppets” album. Which reminds me: It’s nearly the 25th anniversary of my last major attack of Crohn’s Disease.
It might seem bat-shit crazy of me to intertwine these two things, but the fact is that the “Master of Puppets” album is probably what helped me get through that attack. That, and the book “Helter Skelter.” I read that book twice as I lingered on the couch, rising only for the frequent bloody bathroom runs that are the hallmark of Crohn’s flare-ups.
But man, I listened to Master of Puppets nonstop. It tapped right into the anger I was feeling as a 16-year-old still reeling from his brother’s death and under the influence of Prednisone.
I had plans back then. I was going to lose 30 pounds, grow my hair long and find myself a girlfriend. I was going to live a life closer to normal. Not that I knew what normal was back then. As an adult, I’ve learned that normal is a bullshit concept, really. One man’s normal is another man’s insanity.
When the blood reappeared and the abdominal pain got worse, I wasn’t worried about whether I’d live or die or be hospitalized. I was just pissed because it was going to foul up my carefully designed plans.
When I listened to the title track to Master of Puppets, the master was the disease — and the wretched drug used to cool it down.
“The Thing That Should Not Be” was pretty much my entire life at that moment.
I related to “Welcome Home: Sanitarium” because I felt like I was living in one at the time. I was actually lucky about one thing: Unlike the other bad attacks, I wasn’t hospitalized this time.
Though Master of Puppets came out in March 1986, it was that summer when I really started to become obsessed with it. At the end of that summer, the Crohn’s attack struck. The album became the soundtrack for all the vitriol I was feeling.
That fall, as the flare-up was in full rage, Metallica bassist Cliff Burton was killed in a bus accident in Europe. It felt like just another body blow. I found this band in a time of need, and a major part of the music was ripped away.
I recently found a track of “Orion” where Cliff’s bass lines are isolated. It puts my neck hair on end every time I play it.
Though Crohn’s Disease is something that sticks with you for life, that was the last brutal attack I suffered. I’ve had much smaller flare ups since then, but only days-long affairs and nothing that kept me confined to bed.
It still manifests itself in other ways. If my eating goes off the rails, I’m much more susceptible to irritable bowel syndrome. Too much information? Perhaps. But for those who need to watch for the signs in themselves and loved ones, it’s important.
If I feel joint pain, which I do once in awhile, that’s partly the Crohn’s Disease manifesting itself. People think it’s exclusively a disease of the colon, but it’s more than that.
In later years, some of the mental illness and addictive behavior was easily traced back to the childhood illness. The experience left me with some deep insecurities about what I could and couldn’t do, and instilled in me a biting fear of the unknown.
Given the severe food restrictions that were part of the treatment, I was destined to become a binge-eating addict.
With that in mind, it makes perfect sense that a lot of the same treatment I’ve had for OCD and binge eating has all but eliminated the Crohn’s symptoms.
Getting rid of flour and sugar and weighing out my portions has led to a lot less pain.
I know it’s not gone and never will be. Another bad flare up is not out of the question. I’m also a prime target for colon cancer later on. For that reason, I have to have colonoscopies every one to three years. My colon is a tube of scar tissue.
I have a theory that the Crohn’s has been mostly dormant all these years for the simple reason that it ran out of colon to attack. It attacked so thoroughly that the scar tissue formed a protective layer.
That’s probably not true, but it’s not an entirely unreasonable theory either.
I’ll just thank God some more that I’ve been spared the agony in recent years.
I’ve gotten notes lately from folks who’ve read enough of this blog to know I have Crohn’s Disease. They have it, too, and seemed to appreciate that they’re not alone. Some ask what the disease has to do with the mental illness and addictions at the heart of this blog. And so I’ve made this compilation of posts where the Crohn’s is a major factor:
The Bad Pill Kept Me from the Good Pill:Perhaps worse than Crohn’s Disease itself is the drug you take to quiet the flare ups. How the side effects from Prednisone later kept me from taking the medicine I needed to control the OCD.
Needles:The author knows what the needle feels like going in. But this isn’t what you think.
The Migraine: When the author gets a migraine, he’s reminded of what every day used to be like.
Shamed to Death: Why do people with mental and physical illness choose a slow, painful death over recovery?
Sean had his annual physical yesterday and came home in a subdued mood after having blood drawn and a booster shot. I felt kind of bad for him, but not for long. He has it easy compared to my experience with needles. Not that I ever like to see him scared or in pain. It kills me every time.
A lot of needles went into my arms, hands, feet and legs as a kid when I was being treated with severe Crohn’s Disease. There were weekly blood tests. There were IVs. There were three surgeries where a feeding tube was inserted through my neck and chest.
The IVs were the worst. They could never find an optimal place to leave the needle so they’d stick, stick and stick some more. The blood tests didn’t bother me. I would watch as the needle went in, while other kids would turn away and scream. I was too used to it for that.
The whole needle experience was probably a blessing in disguise.
I was born with an addictive personality and was destined to get hooked on something. I think the reason it wasn’t something like smack is because I had already had my fill of the needle. I would never be able to associate needles with feeling pleasure. The pleasure is what addicts go for.
So for me, that pleasure came from compulsive binge eating. How food became the addiction of maximum damage is easy to understand. I come from a family of comfort eaters, and I was banned from any food or drink during my childhood hospital stays. Then I had to take Prednisone, which sends the appetite into overdrive.
I should be grateful. Injecting dope through needles is one of the most deadly addictions a person can have. It leads to relationships with a lot of dark, unsavory personalities. You end up dead or in jail, unless you’re lucky to kick it.
Those things were never really an issue with the food. If anything, my addiction made me hide from people and relationships period, which left me with little opportunity to get into trouble with the law. Besides, I was too much of a chicken for that sort of thing.
I could spin this stuff in my skull over and over again. But it doesn’t matter.
I’m in recovery, I’m grateful and I have too much to do these days to regress to the older behavior.
Snowpocalypse and the Fear of Loss. The author remembers a time when fear of loss would cripple his mental capacities, and explains how he got over it — mostly.
The Ego OCD Built. The author admits to having an ego that sometimes swells beyond acceptable levels and that OCD is fuel for the fire. Go ahead. Laugh at him.
Fear Factor. The author describes years of living in a cell built by fear, how he broke free and why there’s no turning back.
Prozac Winter. The author discovers that winter makes his depression worse and that there’s a purely scientific explanation — and solution.
Have Fun with Your Therapist. Mental-illness sufferers often avoid therapists because the stigma around these “shrinks” is as thick as that of the disease. The author is here to explain why you shouldn’t fear them.
The Engine. To really understand how mental illness happens, let’s compare the brain to a machine.
Rest Redefined.The author finds that he gets the most relaxation from the things he once feared the most.
Outing Myself. The author on why he chose to “out” himself despite what other people might think.
Why Being a People Pleaser is Dumb. The author used to try very hard to please everybody and was hurt badly in the process. Here’s how he broke free and kept his soul intact.
The Addiction and the Damage Done
The Most Uncool Addiction. In this installment, the author opens up about the binge-eating disorder he tried to hide for years — and how he managed to bring it under control.
Edge of a Relapse. The author comes dangerously close to a relapse, but lives to fight another day.
The 12 Steps of Christmas. The author reviews the 12 Steps of Recovery and takes a personal inventory.
How to Play Your Addictions Like a Piano. The author admits that when an obsessive-compulsive person puts down the addiction that’s most self-destructive, a few smaller addictions rise up to fill the void. But what happens when the money runs out?
Regulating Addictive Food: A Lesson in Futility. As an obsessive-compulsive binge eater, the author feels it’s only proper that he weigh in on the notion that regulating junk food might help. Here’s why the answer is probably not.
The Liar’s Disease. The author reveals an uncomfortable truth about addicts like himself: We tend to have trouble telling the truth.
Portable Recovery. Though addiction will follow the junkie anywhere in the world, the author has discovered that recovery is just as portable.
Revere (Experiences with Addiction, Depression and Loss During The Younger Years)
Bridge Rats and Schoolyard Bullies.The author reviews the imperfections of childhood relationships in search of all his OCD triggers. Along the way, old bullies become friends and he realizes he was pretty damn stupid back then.
Lost Brothers. How the death of an older brother shaped the Hell that arrived later.
Marley and Me.The author describes the second older brother whose death hit harder than that of the first.
The Third Brother. Remembering Peter Sugarman, another adopted brother who died too early — but not before teaching the author some important lessons about life.
The Tire and the Footlocker. The author opens up an old footlocker under the stairs and finds himself back in that old Revere basement.
Child of Metal
How Metal Saved Me. Why Heavy Metal music became a critical OCD coping tool.
Insanity to Recovery in 8 Songs or Less. The author shares some videos that together make a bitchin’ soundtrack for those who wrestle with mental illness and addiction. The first four cover the darkness. The next four cover the light.
Rockit Records Revisited. The author has mentioned Metal music as one of his most important coping tools for OCD and related disorders. Here’s a look at the year he got one of the best therapy sessions ever, simply by working in a cramped little record store.
The Rat in the Church Pew. The author has written much about his Faith as a key to overcoming mental illness. But as this post illustrates, he still has a long way to go in his spiritual development.
Running from Sin, Running With Scissors. The author writes an open letter to the RCIA Class of 2010 about Faith as a journey, not a destination. He warns that addiction, rage and other bad behavior won’t disappear the second water is dropped over their heads.
Forgiveness is a Bitch. Seeking and giving forgiveness is essential for someone in recovery. But it’s often seen as a green light for more abuse.
Pain in the Lent. The author gives a progress report on the Lenten sacrifices. It aint pretty.
It screwed up my brain and pushed me toward an adulthood of addictions and other hangups. I’m not going to give you a detailed scientific rundown of how the disease works. It’s enough to tell you that it attacks every part of the digestive system, ripping holes into the colon wall that can cause a person to bleed to death if left untreated.
I lost a lot of blood along the way and had a couple transfusions in the late 1970s. This left me scared to death in the 1980s and 1990s about AIDS, because many people got it from tainted blood transfusions. Fortunately, I’ve been tested many times for it and that didn’t happen. I was lucky.
A couple times, I’ve been told, the doctor’s came close to removing the colon. Too much of it was under siege and they didn’t know where to start in terms of targeting it. But it never came to that.
The pain was pretty intense. I really don’t know how my parents were able to get through it. I think it would cause me more anguish to see one of my kids suffer than to go through it myself. That had to hurt. Especially since they lost another child along the way. It also couldn’t have helped that I would be in the hospital for six-week stretches in 1978, 1979, 1980 and 1981.
The most popular drug to treat it is Prednisone, which comes with a wide list of side effects. In fact, the drug screwed with me much more than anything else. More on that in “The Bad Pill Kept Me from the Good Pill.”
All things considered, I’m probably one of the luckiest Crohn’s patients on Earth. The last bad flare up was in 1986 and I haven’t had once since. I still go through frequent periods of inflammation, but nothing that requires drugs or hospital stays. The colon is checked out every other year to make sure the layers of scar tissue don’t run wild and morph into cancer. The risk of colon cancer for me is pretty high at this point, but since it’s being checked so often I’m not worried about it. If it grows, we’ll catch it early and deal with it.
Instead, I entered adulthood with a binge-eating disorder that stemmed partly from not being allowed to eat anything for weeks during flare-ups and frequent bouts of depression.
But now that all those things are under control, I can have a little fun and share three of the more unusual byproducts of the disease:
–I look strangely on people with the name Colin. No offense to the former secretary of state or anyone else with the name. It’s just that when I hear the name, I think of bleeding intestines. Sorry, man.
–I can swallow pretty much anything without getting seriously hurt because of the thick walls of scar tissue. This pisses me off sometimes, because a loss of appetite would have come in handy back when I was binge-eating my brains out. On the plus side, I can suck down the coffee without consequences.
–Needles don’t scare me. As a kid I had to have weekly blood tests to monitor for anemia. This went on for years. And they always had trouble finding a good vein because they collapsed from all the IVs during hospital stays. No matter. I don’t have to look away when the needle goes in. It just doesn’t bother me. Good thing I never tried heroin. That’s something I never would have had the guts to do anyway, especially after reading “The Heroin Diaries.”
Sometimes having guts isn’t what it’s cracked up to be. Especially when the guts are cracked and bleeding.
This post has a happy ending — not just because the worst of the flare ups ended in 1986.
The medical establishment knows a hell of a lot more about Crohn’s Disease than they did back then. Today most people know what Crohn’s Disease is. That wasn’t the case in the 1980s.
And Prednisone, while still popular, is no longer the only pharmaceutical option.
Even the embarrassment factor is smaller. People are more open about discussing these things.
In my experience, openness leads to more solutions.
In a previous post I mentioned that I take medication for OCD: Prozac. It’s been extremely helpful, but it took a long time for me to even consider trying it. Here’s why:
Mood music:
As a kid sick much of the time with Chron’s Disease, I was often put on the maximum dose of a drug called Prednisone. The side effects were so horrific that I forever after resisted the idea of taking medication until I reached a point in my OCD treatment where I felt so desolate I was willing to try anything.
Prednisone does an excellent job of cooling down a Chron’s flare up. If not for the drug, chances are pretty good I wouldn’t be here right now. More than once the disease got so bad the doctor’s were talking about removing my colon and tossing it in the trash. Each time, the medication brought me back from the brink.
But there was a heavy price — literally and figuratively.
The drug also fueled vicious mood swings and introduced me to a lifetime of migraines, many of which were so bad I’d end up hunched over the toilet throwing my guts up.
So when I started to confront my mental disorder and specialists started talking about different medications available, I balked. In fact, I told one therapist to go screw.
I focused instead on building up an arsenal of coping mechanisms. That helped tremendously, but it wasn’t enough. I found myself against one final brick wall; one I couldn’t seem to punch through.
And still I resisted.
I had plenty of excuses. I knew many people who had gone on antidepressants and were still depressed most of the time. Some had gained weight — a problem I already had. I just didn’t see the point.
I also couldn’t shake the memory of a dear friend — a man who essentially became an older brother after my real older brother died in 1984 — who had been on medication for depression but ultimately committed suicide anyway. I walked away from that nightmare with the theory that antidepressants made people worse rather than better.
Finally, I resisted because the depression that often sprung from my OCD wasn’t the suicidal variety. Truth be told, I’ve never once considered taking my own life. It just never occurred to me. Mine is a depression in which I simply withdraw, saying little to people and spending as much time as possible on the couch zoning out in front of the TV. To me, medication was for people in far more serious condition.
And so I resisted until I was so desperate I was willing to consider anything, no matter how extreme or stupid.
After researching the various medications and consulting the doctors, I started taking Prozac in January 2007. The results were almost immediate.
I stopped re-spinning old anxieties in my head. I automatically stopped obsessing over things I couldn’t control, like the possibility that the plane I was on might crash en route to a business conference. Suddenly, I had an overwhelming urge to experience all the things I used to fear.
I fell in love with travel. Work challenges became fun instead of something to dread. I finally became comfortable in my own skin.
The compulsive tendencies still surface on occasion. I still get batty over getting chores done. I still get bent out of shape if my sons use my desk and move a few trinkets out of place.
But the fear and anxiety went away in 2007, and haven’t returned. For that, I am grateful beyond words. Nothing robs a person blind quite like fear. You spend all your time hiding from all the beautiful aspects of life.
The medication also gave me the last little push I needed to stop living my work life in a way that was all about pleasing others and maintaining some imagined golden-boy image. By the time I moved over to CSO Magazine to be a senior editor, I was well past that sort of thing. While there, I’ve never had a problem speaking my mind, expressing ideas forcefully and simply enjoying the heck out of the work itself. I’m certainly lucky in that I work with a wonderful group of people. I truly like everyone I work with.
I did do some research on anti-depressant medication and found that there is an actual science to it all. I learned that while personal history is certainly a factor in the things that trigger mental disorder (a history of child abuse, for example), the root cause if often an imbalance in the fluids that direct traffic in the brain. The WebMD website explains it pretty well:
“One common theory is that depression is caused by an imbalance of naturally occurring substances in the brain and spinal cord … Major depression affects about 6.7% of the U.S. population over age 18, according to the National Institute of Mental Health. Everybody at one point or another will feel sadness as a reaction to loss, grief, or injured self-esteem, but clinical depression, called ‘major depressive disorder’ or ‘major depression’ by doctors, is a serious medical illness that needs professional diagnosis and treatment.”
It goes on to say that most anti-depressant medicines improve mood “by increasing the number of chemicals in the brain that pass messages between brain cells.” That’s a key point. Mental disorders that are often viewed as stereotypical insanity and craziness are rooted in a chemical imbalance. When the brain chemistry is out of whack, the thinking process is disrupted. In my case, side effects of that imbalance included compulsive behavior and the inability to move on from certain preoccupations.
A good example: In 2005, when I was still at the beginning stages of dealing with my OCD, the hype about bird flu started to circulate. There was endless talk about that strain evolving into a pandemic as deadly as the 1918 Spanish Flu; far worse than the H1N1 pandemic we are currently experiencing.
I spent the following months in blind, silent panic. I feared for my children. I scanned through three pages of Google News results per day to keep track of the bird flu deaths in Asia and elsewhere.
When I started taking Prozac, that sort of thing stopped.
Make no mistake: Medication does not turn us into uncaring, numb and slap-happy beings. I still worry when my kids get sick. I still worry when the economy tanks and layoffs occur all around me.
But instead of stewing over these things around the clock, to the point where I can focus on little else, I’m able to function and still enjoy the precious present despite the mental burdens of the day.
Medication isn’t for everyone. I have no doubt that a lot of people on antidepressants don’t need to be. But in my case, the diagnosis was dead on and the prescription has done wonders for me. Three years ago, the concept would have been absolutely absurd.
The ultimate lesson: If you are in the grips of mental illness and you face the prospect of going on medication, don’t be afraid.
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