The OCD Diaries

September 27, 2015September 27, 2015

Remembering Cliff Burton, Metallica’s Original Bassist

I couldn’t let the day go by without acknowledging a grim anniversary. Twenty-nine years ago today, Metallica bassist Cliff Burton was killed when the band’s tour bus flipped over on a lonely road in Sweden.

Mood music:

The band’s first three albums had a huge impact on me.

In fact, Metallica’s “Master of Puppets” album helped me get through 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 DID help 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.

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 that 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.

I haven’t been much of a Metallica fan in recent years. I enjoy some of what they’ve done from the fifth album to now. But the first three albums were special. Especially “Master of Puppets,” which was there when I needed it most.

File:Cliff Burton Memorial.PNG

June 13, 2013

Superman Was There When I Needed Him Most

Tonight I’m doing something I never do. I’m going to a midnight movie premier, for Man of Steel. I’m no night owl, so this ought to be an adventure. But Superman has always been important to me.

It seems ridiculous, having such devotion to a fictional superhero. But to be honest, the Man of Steel came into my life at a time when I really needed a superhero, even if he was from a world of make-believe.

It started in 1978, the first time I was hospitalized with a mystery disease that robbed me of a lot of blood and strength. Back then, Crohn’s Disease was still a rare thing, and the doctors were feeling their way around in the dark when it came to treatment. I spent six weeks in a hospital bed, and the TV was my only solace. That’s when I discovered the Superman series from the 1950s. I got lost in the images of the man in red, white and yellow, outrunning trains and speeding bullets.

When I got out of the hospital that December, Superman: The Movie had just come out, and we went to see it. I was hooked. I identified with the hero’s feelings of being a misfit, trying to fit in somewhere. I’ve since watched that movie thousands of times.

Right after my third six-week hospital stay, Superman II came out. I saw it opening day. I saw all the Superman films that followed. Some were pretty terrible, but I didn’t care. By then, I was hooked.

We’re often taught that it’s silly to spend too much time buried in fantasy. But if the fantasy gets you through difficult times, I say so be it.

This new movie is supposed to be a radical departure from the Superman stories we’ve grown familiar with. It’s supposed to be darker, edgier. Sounds like a fun couple of hours to me.

The Man of Steel has always been there in my time of need. Seeing his latest movie at midnight is the least I could do to return the favor.

Man of Steel Movie Poster

March 8, 2013

Don’t Mistake Remission for a Cure

As someone who suffered badly from Crohn’s Disease as a kid and still deals with the effects today, I find the story of Ari Meisel inspiring. The NYC resident tells Fox News that he found a way to beat the disease, which is considered incurable.

Mood music:

[spotify:track:5yH11HAtcLVaZ63t8HPlBR]

A friend sent me the article and asked what I thought of it. The headline thrilled me: “Curing Crohn’s? Man says he found way to beat incurable disease.” I started reading and got more jazzed as Meisel explained how he radically changed his diet, embraced yoga, weaned himself off his medication and drove all the illness from his body.

Then came this paragraph:

“Although he realizes he fundamentally cannot be ‘cured’ of an incurable disease, he and [Dr. Bart Kummer, his specialist,] can agree he is in remission — for now.”

From the Resources section: Websites for dealing with Crohn’s Disease

The rest of the article is a debate over whether Meisel’s lifestyle changes made the difference or if the medicine he had been on — mercaptopurine, or 6MP — did the trick. Meisel never claims he cured himself. Yet Fox teases the reader with a headline suggesting someone has found a cure.

It’s a misleading headline that’s sure to disappoint those who suffer from Crohn’s Disease today. The article itself is good, and the lessons are important. But it is not about a cure.

I’m not going to rip Fox over it, because I’m an editor who has produced his fair share of dud headlines over the last couple of decades.

As for Meisel’s story, it’s inspiring but not surprising.

When a Crohn’s attack is on full burn, it will make you think you’re on death’s door. In fact, it’ll make you wish you were there. Today’s medications are better than what was available to me in the 1970s and 1980s, but like the Prednisone that drove me to the brink of insanity, drugs like 6MP have horrible side effects, including an increased risk of cancer.

All Crohn’s patients know that diet and exercise are key to keeping the disease in remission. Even then, all bets are off. That Meisel has found solid remission through a strict diet and exercise regimen is admirable but to be expected.

I’m lucky. Though the disease manifests itself in different ways today, I haven’t suffered a crippling attack since 1986. My doctors tell me that’s rare.

I know I’m not cured, though.

Whenever you see an article claiming a cure for this disease, go ahead and read it, because you’re always bound to find useful, actionable information.

But don’t think for a second that it’s going to somehow free you forever.

Intestines

January 31, 2013

My Crohn’s Disease Is Doing Push-Ups

Recovering addicts have a saying: “My disease is doing push-ups in the parking lot.” The meaning is that you can be years into sobriety, but you’re never cured. The disease is ready to beat you down as soon as your guard slips.

I’ve learned that Crohn’s Disease does the same thing.

Mood music:

[spotify:track:6nDqFWB9MtQ9rTjmm3gDAD]

As violent and damaging as my childhood Crohn’s Disease was, I haven’t had a full-blown attack since 1986. It would be easy to grow complacent and consider myself cured, but the disease sends me the occasional sign that it’s still there.

From the Resources section: Websites for dealing with Crohn’s Disease

What would otherwise be a minor stomach bug turns into full-blown inflammation. Not an attack with the blood, aching joints and an abdomen that feels like it’s on fire, but one that leaves me feeling bloated and off-balance, dogged by a dull soreness in the middle and sudden urges to make a bathroom run. I’m not sure urges is the best word, either. It’s a rushing discomfort that comes on suddenly.

I started feeling it yesterday, and it helped ensure a lousy night’s sleep.

I’ve been asked if I fear another full-blown attack like those that left me hospitalized and jacked up on Prednisone as a kid. I’m not.

I know I’m not cured, so I expect that one of these days, another attack will materialize. I’d rather it didn’t, of course. But I’ve developed a stoic attitude about it. If it comes, I’ll deal with it. I’ll accept the treatment and do what I must to shut it down, even if it means taking Prednisone — a drug I still blame for unleashing the chemical imbalance in my brain that has led to OCD, bouts of depression and a history of binge eating. I figure the drug can’t do much more to me on that score, though it would certainly give me a temporary bad attitude.

In a way, the little bouts of inflammation like the one I have now are a gift. They keep me aware of the disease that lives inside of me and what it can really do to me.

And they remind me to take care.

Inflamed Intestines

August 13, 2012

A Legal Victory for Crohn’s Sufferers

Though Crohn’s Disease has mostly left me alone in my almost-middle age, there’s one thing it still does to me on a regular basis. It strikes me with an out-of-nowhere urge to use the bathroom.

It has hit me while driving, while sitting in work meetings and while standing in the supermarket cereal aisle.

Mood music:

[spotify:track:264rftGXMqqN31AZiurLAX]

When the urge hits, the worst thing is being in a store where the restrooms are for employees only. I can understand why some places do this. The general public has a history of misusing public restrooms: scrawling graffiti on stall doors, clogging toilets and leaving ’em that way, and engaging in a multitude of other disgusting behaviors.

But these places ought to make exceptions for those of us who suffer from these surprise attacks. Most do, but I’ve been in places where they stubbornly enforce the employees-only policy. In their minds, store owners have to do what they have to do. Fair enough. But so do Crohn’s and colitis sufferers. And in Massachusetts, their efforts to legally require places to allow them restroom access have paid off.

WBUR, Boston’s NPR affiliate, reports that Gov. Deval Patrick has signed the Restroom Access Bill into law, making the Bay State part of a trend. To date, 12 other states have passed some version of this legislation, Illinois being the first. From the report:

Under the new Mass. law, businesses with at least three employees on duty must allow anyone with Crohn’s, colitis, irritable bowel syndrome, a colostomy bag — or with any other medical condition involving urgent toilet needs — to use an employee-only restroom if public facilities aren’t readily accessible. One catch: sufferers must have a valid doctor’s note or approved ID card verifying their disorder. Shopowners can be fined $100 for failure to approve a valid request.

A big advocate for the legislation was Pearl Jam guitarist Mike McCready, who I’ve written about before. He wrote a letter to lawmakers asking them to support the legislation.

I want to thank those who worked so hard to make this happen.

Fortunately, more and more stores have public restrooms. But since we’re always in the store that doesn’t when the sudden urge hits (that’s how it sometimes feels, at least), this will provide some real peace of mind.

Digestive Tract

June 21, 2012

Four Tips for Prepping for a Colonoscopy

I wasn’t going to write about going for a colonoscopy. Not because I’m embarrassed or because I’m worried about grossing you out. But because it’s been done so many times by so many other people. What could I possibly add to the discussion?

Mood music, in honor of my only nutrient for the next several hours:

http://youtu.be/BLKcDiOspsY

Since most of you will have to go for a colonoscopy at some point, let me help you make the best of it. After all, thanks to a lifetime of Crohn’s Disease, this is old hat to me. I have to have the procedure every two to four years because all of the scar tissue in me has raised my colon cancer risk significantly.

If you have to have a test like this, there’s nothing to be embarrassed about. Your ass is nothing special to the doctors performing the procedure. They see scores of butts every week, and to them that’s no different than the car mechanic who stares at scores of tires, timing belts and radiator hoses every week. When’s the last time you got excited about staring at those things?

I’ve developed my rituals over the years, as any good OCD case will do, and they have made this procedure a lot less dreadful. This is a good time to share.

Drink plenty of black coffee, tea and water. Black coffee and tea are among the liquids you’re allowed the day before, so drink lots of them. The caffeine will keep you going in the absence of food. But drink a lot of water, too, because too much caffeine will dehydrate you. I normally don’t worry about that, but fasting is a different story. I have a steady flow of black coffee on hand today, and while I prefer a little cream in there, black suits me fine.
Watch good TV to distract you. During the clean-out part, you’ll have to drink massive amounts of water or clear juice loaded with a laxative. I have to drink four big bottles — 8 ounces every 20 minutes or so until it’s gone — of green Gatorade with a mountain of Miralax dumped in. That’s actually a lot better than the 2 gallons of gross salt water they used to prescribe, but you still need a distraction. This time, I’ll watch the American Masters episode on Pearl Jam’s 20 years of music making.
Move as little as possible. I’ll spend most of the day sitting at my desk working, another welcome distraction. When I get home, I won’t do much that doesn’t involve lying on the couch, until the bathroom trips commence. You won’t have much strength, so don’t blow it all early in the day.
Read about other people’s colonoscopies. Reading about others’ colonoscopies will make yours seem a lot less scary. Ozzy Osbourne’s account is worth the price of his memoir, I Am Ozzy, all by itself. Also worth a read is this account by author Laurel Hermanson. My favorite part is her account of the recovery room, where farting is a sure sign of success.

May 3, 2012

For A Girl Recently Diagnosed With Crohn’s Disease

The daughter of close friends just found out she has Crohn’s Disease. She’s suffering a lot right now, and I know exactly what she’s going through. This post is for her.

Mood music:

[spotify:track:3l4L10OL1gbfypzTwjvINb]

Hello, my young friend. I’m sorry that you’re hurting so much right now. I was diagnosed with Crohn’s Disease when I was around your age, and spent many weeks in the hospital between ages 8-16. It stinks. But if there’s one thing I’d like you to remember after reading this, it’s that it WILL get better.

I experienced all the things you are now — the massive loss of blood, the knifing pain in the gut, sleepless nights in the bathroom, and more blood.

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.

I mention this because you should know how hard it is for your Mom and Dad to see you hurting. They’re new to this Crohn’s thing, and they will worry endlessly about what they are doing for you and whether it’s the right thing. Be patient with them if you can. But if you need to yell at them once in awhile so you can cope, go ahead. That’s what parents are for.

As you will probably soon discover, the most popular drug to treat what’s making you sick is Prednisone, which comes with a long list of side effects. Your face might get puffy and you’ll want to eat everything in sight. But you’re a strong kid and you can handle that.

A lot of people helped me survive a childhood of brutal Crohn’s Disease: My parents, great doctors, school friends who helped me catch up with my schoolwork and rooted for me whenever I got out of the hospital, and a great therapist who helped me sort through the mental byproducts of illness.

I think you’re going to get through the current attack and that you will be able to move on to a better life. Again, I lean on my personal experience.

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.

Had the doctors removed the colon when I was a kid, I think things still would have worked out. I would have learned to live with it. Whatever you have in front of you, I think you can make the best of it and push through.

Be strong and keep the faith, my young friend. I hope you feel better soon.

–Bill

April 24, 2012

A Crohn’s Disease Attack, Put To Music

During a severe Chrohn’s Disease attack in the mid-1980s — around the time I was discovering Van Halen‘s older albums — I found one song that really personified what I was feeling.

It’s the final song on the band’s debut album from 1978, which is also the year I was first attacked by this disease.

As I’d spend the early-morning hours sitting on the toilet in the upstairs bathroom of 22 Lynnway, Revere, losing blood, clutching my gut and making a thousand deals with God, that song would reverberate through my head, over and over.

I had forgotten about it over the years. But this morning, for the hell of it, I decided to listen to that first Van Halen album on the drive to work. Somewhere along Route 128, the song came on, and I was transported back in time.

I went a lot of years without listening to the song. It’s not that it brought back the bad memories. It’s just that I’ve been listening to other things, including Van Halen’s new album, “A Different Kind Of Truth.”

Looking back, I’m glad I had that song going through my head during the overnight Crohn’s attacks. It put noise and words to what I was feeling, and made those long hours of darkness feel a little less lonely.

As I replay the new Van Halen album over and over, I’ve found another song that fits my life today. It’s a track called “Blood and Fire.”

Those two words fit the feeling (fire) and result (blood) of a Crohn’s attack. But the song is about coming out the other side, making it through the blood and fire and doing, as David Lee Roth sings, a victory dance.

http://youtu.be/nwXzBn3W1xM

Thanks for the coping music, boys.

April 17, 2012

When The Going Gets Tough, I Disconnect

I’m leaving my weekly therapy sessions with a headache these days, because I’m working through another deeply embedded flaw in my soul.

Mood music:

http://youtu.be/louQ7s1ZkGU

It’s not nearly as bad as the therapy I had in 2004-2006, when I had to endlessly churn the sewage of my childhood memories in search of clues on what was wrong with me and how I got that way. Back then, I didn’t know myself very well. Now I do.

Knowing myself as I do, I’ve started to zero in on the ongoing flaws that hold me back and hurt loved ones. That apparently requires a few more trips to the sewer.

I’ll give you a fuller account further along in this process. For now, let’s just say I have a wall I tend to hide behind when the going gets tough. This wouldn’t be much of a problem if not for the fact that life is ALWAYS tough. Not just for me, but for everyone. We all have our Crosses to carry and difficulties to endure. In my case, it’s a lot harder with a wall in the way.

So here we are again. Back in the mental sewer. I know my way around now, but the stench can still be too much to take.

The first question from the therapist was if I had talked to my mother lately. No, I told him. I thought Mom and I were making progress in December, but she couldn’t handle this blog and went off the deep end. I won’t defend myself. She’s entitled to her point of view. But let’s just say I was hoping to be writing posts by now about how we were reconciling.

So no, I told him. We’re not talking.

Then he asked about how I handled my brother’s death when I was 13. I told him I pretty much disconnected from the world. Same thing after my best friend killed himself in 1996.

“You’re starting to see the pattern?” the therapist asked.

Yeah. When the going gets tough, I disconnect. The bigger events caused that self-defense mechanism to take root all those years ago. But it kicks in during life’s more routine challenges. And when the wall goes up, my anger level kicks up a few decibels. I don’t do what I did in my teens and 20s: Throwing furniture through walls and plotting endless ways to find those who hurt me so I could hurt them back.

I’m not THAT guy anymore. But I do still get angry. When I do, I turn in on myself and brood.

But I knew that already.

Now the question is, what to I do about it?

I love my life now, and I’m blessed beyond measure. But the better my life gets, the more of an eyesore the wall becomes. It’s got to go.

My therapist has seen this stuff before. He knows the wall is rooted in the memory sewer.

So I guess I’ll be here for awhile longer.

January 26, 2012

RIOT Guitarist Dies From Crohn’s Disease

I’m sad to report that Mark Reale, founding guitarist of the legendary metal band RIOT, died yesterday from Crohn’s Disease complications.

Mood music:

Here’s the news from Blabbermouth, a heavy metal news site:

Reale died yesterday (Wednesday, January 25) in a San Antonio hospital due to complications of Crohn’s disease — an ailment he had battled for most of his life. He was 56 years old.

Reale had reportedly been in a coma for the past two weeks after suffering a subarachnoid hemorrhage on January 11.

Mark is survived by his father, Anthony Reale, and was preceded in death by his mother, Frances Reale.

Mark spent most of his life working and performing while enduring almost constant pain and the side effects of treatment for Crohn’s disease. He was in Texas bravely attempting to practice for the shows, but was felled by a severe onset of Crohn’s symptoms, leaving him in the Intensive Care Unit at an undisclosed facility. Mark was struggling with these symptoms throughout the production of RIOT‘s new album, “Immortal Soul”, and guitarist Mike Flyntz recorded a major portion of the guitars on the LP with Mark‘s creative direction while Reale was unable to perform.

For those wondering if I’m freaked out because the disease I’ve had for most of my life killed someone, the answer is no. I’ve always known this is a potentially fatal disease. But deaths are pretty rare. Deaths from asthma are rare, too, but asthma complications killed my brother all the same.

The truth is, you never know when you’re time is up. I used to spend a lot of time worrying about my own mortality but not anymore. The more time you spend doing that, the more life you waste.

I’d rather go out knowing I did my absolute best as a dad, husband and writer than sitting back at age 95 wondering what the hell happened to my life.