Here was the question, as posed to me on Facebook:
“Bill, do you think prednisone had anything to do with your OCD? You are the second person I know to have Crohn’s and depression, I have taken the drug in the past and it definitely messed with me mentally.”
The short answer is that I don’t know. I’m not a doctor and I can’t speculate on scientific questions I know nothing about. All I have are scientifically unsupported theories based on personal experience. I’m willing to explore the question from that perspective.
Of this I have no doubt:
Prednisone had brutal side effects that linger to this day. It damaged my vision, making glasses necessary at all times. It sparked migraines that still come and go. It gave me mood swings that have never really left me. And it had plenty to do with the binge-eating habit that has hounded me as an adult.
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 quadrupled my appetite, which was already in overdrive because of the food restrictions imposed upon me during times of illness.
It corrupted my relationship with food forever.
But I can’t say it was the cause of me developing OCD. There are many reasons I developed the disorder. Prednisone may have had a role, but I’ll never know for sure.
But that’s fine with me.
At this point, it doesn’t matter how I got it. I have it, and the best I can do is manage it with all my coping tools, with extra help from Prozac and the 12 Steps of Recovery, which I use to control the addictive behaviors.
My stepmom found some photos of the younger me during a recent cleaning spree. Here I am, with long hair and very large glasses, circa 1992:
That hair was halfway down my back before I decided to chop it a year later. Now, nearly 20 years later, the hair is ON my back. I still have pretty big glasses, though.
That’s not the only thing that hasn’t changed, though. Review the next set of before-after pictures and see if you can spot the common elements between 1992 and 2011:
Those who find the common element will win… absolutely nothing.
By the way, that younger Bill Brenner may look better than I do, but I wouldn’t change a thing. I may be uglier, but I’m a lot happier than I was when those long-haired photos were taken.
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.
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.
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:
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.
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.
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.
The discomfort, I’m starting to realize, has to do with the hospital itself.
He’s at one of the best hospitals in Boston, and the staff I’ve talked to are friendly and compassionate. He’s definitely in good hands.
But the sights and smells get to me. The machinery and the sounds they make unsettle me. I had forgotten these things.
It’s a phobia of sorts, the kind that always kept me from visiting my grandparents whenever they were in the hospital, which was a lot. I regret not visiting them as much as I should have, but there’s something about walking into those places that makes you take a hard stare at your own mortality.
I find it odd that I would have this problem, considering I was a frequent resident of Children’s Hospital as a kid.
I figure that should have desensitized me a long time ago. Yet here I am, confronting this reality.
I noticed my father had a swollen hand when I walked in his room. The sight would freak some people out, but I immediately knew what it was: The swelling you get when an IV needle has been in your vein for too long. It used to happen to me all the time. Could it be that it’s not really a phobia, but something even more unsettling — the discomfort of looking at the machines, beds and gray-beige walls and floors and feeling, in an odd sort of way, like I’m home?
Most of us feel the periodic pull of our old neighborhoods. We like to visit the places where we grew up. Even if we had a bad childhood, we feel the need to revisit the scene of the crime. I often do, and can never fully explain why. Maybe I should go visit my old floor at Children’s Hospital. Maybe it’ll break the spell.
Yeah, probably not.
Whatever is behind the uneasiness, I’m not staying away this time.
For one thing, I can’t let something so stupid keep me from doing the right thing.
I’ve mentioned before that I had to take a lot of this nasty drug called Prednisone as a kid, and how the side effects were almost as bad as the Crohn’s Disease flare-ups the drug was meant to snuff out.
Well, my old elementary school friend Myles Lynch posted some class pics on Facebook that show the physical impact. Looking at them brings back memories good and bad.
Let’s start with first grade, before the disease surfaced. I’m dead-center in the back row, looking like a normal kid:
By the time the second-grade class photo is taken, I’ve been diagnosed with Crohn’s Disease and I’ve spent six weeks in the hospital. The results of the Prednisone on my face are pretty clear. I’m second from left in the back row:
By the time the third-grade pic is taken, I’ve been through my second flare-up and six-week hospital stay. I’m in the back row, two kids to the right of the teacher, Ms. Cole:
I’m not in the fourth-grade class picture, because as the photo is being taken, I’m in the middle of a third six-week hospital stay for another flare-up. The disease usually struck sometime between Halloween and Thanksgiving. This time, it waited until spring.
By sixth grade I’ve been off Prednisone for a while. You can see it in my face, front row, far left:
The other kids in these pictures have had their own challenges and joys in life. I’ve kept in touch with some of them. But here’s the important thing: Back then, when we were a small, close-knit community, before the puberty-driven bullying of middle school, these kids did all they could to make me feel better. When I was in the hospital they would send hand-made get-well cards. When I’d get out of the hospital, they would give me a warm, cheerful welcome back.
Those acts of kindness are something I will never forget.
The pictures also remind me a lot of what life was like in the hospital. Those hospital wards were like little communities, where the young patients would try to find ways to pass the time. We shared each other’s toys and watched the same TV shows. I always seemed to be the only Crohn’s patient on a floor full of kids with Cystic Fibrosis. Treatment for that disease was nothing like it is today, and many of the friends I made in the hospital died before they got to adulthood.
I lost a lot of blood back then, because I had a colon full of holes. But compared to my lost friends, I got off lucky.
I owe that to God and all the helpers he put in my path.
Whenever I’m having a bad day and I start to get cranky and impatient with people, I try to think back to those days. Doing so makes me remember how blessed I am, and how I should stop wasting time on hard feelings and earn that blessing by spending my life as one of those helpers.
I’ve been walking past Children’s Hospital these days on the way into the neighboring hospital my father has been in since suffering a stroke last week, and the memories come flooding back of the time when I was a frequent resident there. And seeing my father, with his eye patch and slackened mouth, makes me remember the things he used to do to keep me going.
During one stay, I was obsessed with getting a talking View-Master, where you put in these paper disks and look through a view lens at the scenes that blow up larger than life on a screen inside the gadget. The taking variety was all the rage in 1979, and I bellowed about it like the spoiled brat I was. You get very spoiled and miserable to be around when everyone is tending to your every need.
My father got me the talking View-Master, and bought me a new Star Wars action figure each week, followed by a trip to Friendly’s for ice cream on those occasions where I was allowed to have it.
The more emotional variety of affection was something he always struggled with, though in his way, he was doing all he could to show his love.
Amazing, the things that come back to you after looking at a few childhood pictures.
Since I’ve been adding new readers along the way, I always get questions about why I started this thing. I recently expanded the “about” section, and that’s a good starting point. But more of a back story is in order.
Mood music:
Before I started THE OCD DIARIES in December 2009 with a post about depression hitting me during the holidays, I had always toyed with the idea of doing this. The reason for wanting to was simple: The general public understands little about mental disorders like mine. People toss the OCD acronym around all the time, but to them it’s just the easy way of saying they have a Type-A personality.
Indeed, many Type-A people do have some form of OCD. But for a smaller segment of the population, myself included, it’s a debilitating disease that traps the sufferer in a web of fear, anxiety, and depression that leads to all kinds of addictive behavior. Which leads me to the next reason I wanted to do this.
My particular demons gave me a craving for anything that might dull the pain. For some it’s heroin or alcohol. I have gone through periods where I drank far too much, and I learned to like the various prescription pain meds a little too much. But the main addiction, the one that made my life completely unmanageable, was binge eating.
Most people refuse to acknowledge that as a legitimate addiction. The simple reason is that we all need food to survive and not the other things. Overeating won’t make you drunk or high, according to the conventional wisdom. In reality, when someone like me goes for a fix, it involves disgusting quantities of junk food that will literally leave you flopping around like any garden-variety junkie. Further evidence that this as an addiction lies in the fact that there’s a 12-Step program for compulsive over-eaters called Overeater’s Anonymous (OA). It’s essentially the same program as AA. I wanted to do my part to make people understand.
Did I worry that I might get fired from my job for outing myself like this? Sure. But something inside me was pushing me in this direction and I had to give in to my instincts. You could say it was a powerful OCD impulse that wasn’t going to quit until I did something about it.
I write a lot about my upbringing, my family and the daily challenges we all face because I still learn something each day about my condition and how I can always be better than I am. We all have things swirling around inside us that drive us to a certain kind of behavior, and covering all these things allows me to share what I’ve learned so others might find a way out of their own brand of Hell.
I’m nothing special.
Every one of us has a Cross to bear in life. Sometimes we learn to stand tall as we carry it. Other times we buckle under the weight and fall on our faces.
I just decided to be the one who talks about it.
Talking about it might help someone realize they’re not a freak and they’re not doomed to a life of pain.
If this helps one person, it’ll be worth it.
When I first started the blog, I laid out a back story so readers could see where I’ve been and how personal history affected my disorders. If you read the history, things I write in the present will probably make more sense.
With that in mind, I direct you to the following links:
The Long History of OCD
An OCD Christmas. The first entry, where I give an overview of how I got to crazy and found my way to sane.
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.
An old friend from Revere came over last night, and somewhere in the conversation the subject turned to Crohn’s Disease and why so many of our old friends have it.
I’ve had the disease since the 1970s, and my struggles with it are well documented in this blog. But my friend noted how many of our friends from the Point of Pines, Oak Island and elsewhere have taken bad turns with their health in recent years, and several have developed my disease.
I won’t name names for privacy’s sake, but besides me, we counted three other cases. Could it be something in the water? my friend wondered aloud. After all, a huge General Electric plant sits just across the water in Lynn. There’s also a trash-burning incinerator across the Pines River on Lynn Marsh Road.
Could those industrial sites be responsible?
Who knows? I’ve never seen any studies on the matter, so it would be impossible to trace all the illness to those places.
I do know that when we were kids, before the Deer Island water treatment plan was built, the water of every coastal town in the Boston area was polluted with a putrid mix of bacteria. We all swam in that water as kids, and who knows what the long-term effects of that were.
I have another theory: Doctors simply know a lot more about Crohn’s Disease today than they did back then.
When I was first diagnosed with it in 1978, very little was known or understood about the disease. I endured very long hospital stays and severe dietary restrictions that I don’t really see imposed on people today. People still end up having to take these measures, but it’s not as commonplace. Drugs have improved. The understanding of what makes the disease tick has improved.
Maybe that understanding has simply led to more cases being found and diagnosed.
Of course, it’s all speculation at this point.
I’m just glad my case of the disease is in check, and I hope some of the fellow sufferers are doing better with theirs.
I heard another theory from another friend a couple weeks ago, that Revere had a curse hanging over it that shot down a lot of people from our generation. Besides the Crohn’s Disease, there were multiple suicides and drug addictions that ended in death.
If you asked me that about six years ago, I’d have bought the theory straight away. Today I tend to doubt it.
It was a sad and unfortunate period, but it wasn’t a curse. We all had our share of childhood happiness in Revere in between the bad stuff. And I know now what I didn’t get back then: That we weren’t meant to live soft lives devoid of pain and struggle. These things are tossed in our path to mold us into what we can only hope to be: good people. It doesn’t always work out that way, of course. But let’s face it: Has life ever been fair?
I recently wrote about the time the Brenners nearly left Revere. There’s no question that for a time, I hated that city and would have done anything to get out.
But I think I would have developed the Crohn’s Disease wherever I lived. Bad things and good things would have happened wherever I lived.
Those who find the common element will win… absolutely nothing.
When I saw his picture, my first thought was, “Man, he was young.” In fact, he died just shy of his 40th birthday.
