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:

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

P.S.: Here’s a picture of me the year I was diagnosed. I’m the kid at the very back, right in the middle. As you can see, Crohn’s Disease couldn’t kill my smile. It won’t kill yours, either.

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.

Thanks for the coping music, boys.

Strong Too Long, Or Weak Too Often?

There’s a saying on Facebook that depression isn’t a sign of weakness, but simply the result of being strong for too long. Somewhat true — though weakness does feed the beast.

Mood music:

I’m feeling it this morning.

I’ve always taken a certain level of satisfaction from my ability to stay standing in the face of death, illness, family dysfunction, depression and addiction. Sometimes, I get an over-inflated sense of survivor’s pride.

People love to tell you how awesome you are when you emerge from adversity stronger than before. The victor is placed on a 10-foot pedestal and life looks hunky-dory from up there. But it’s only a matter of time before the person on top loses balance and crashes to the ground.

I’ve fallen from that pedestal a bunch of times, and my ass is really starting to hurt from all those slips off the edge.

All this has me asking the question: How much can you blame depression on being strong too long when many times it comes back because the victim has been weak?

I don’t think there’s a precise answer. I only know this: I feel like I’ve been trying like a motherfucker to be strong 24-7. But I don’t seem to have the fortitude to maintain it, and I give in to weakness.

In the past, that weakness would involve indulging in food, alcohol and tobacco until I was too sick to function.

Today, the weakness involves getting angry and self-defensive and distant at the drop of a hat.

For all the progress I’ve made in managing my OCD, there are still moments where I go weak, put the blinders on and do some stupid things.

It’s the compulsion to keep staring at the laptop screen when one or both kids need me to look up and give them some attention.

It’s stopping in the middle of a conversation with my wife because the cellphone is ringing or someone has pinged me online.

It’s spending too much money on food and entertainment for the kids because it’s easier to me at the time than  cooking the food myself and playing a board game with them instead.

I’ve been working double-time at bringing my compulsive tendencies to heel, going through some intensified therapy. The short-term result is that I’m an angrier person than I normally am.

My therapist made note of that anger at our last meeting. The trigger in the room was him taking me back to my younger years in search of clues to present-day debacles. I thought I was done with sessions like that five years ago.

But I’m learning that the road to mental wellness is not linear. It goes in a circle. It’s like driving to the same place every day for work. The drive to work and back is a loop of the same landmarks, the same traffic patterns and the same behind-the-wheel thinking sessions.

I’m learning that managing my issues is going to involve frequent trips back and forth from the past to the present. This pisses me off. But I know I have to keep at it.

I guess I’ll always have my weak moments because of the events that shaped me.  But you can still be strong throughout it, learning to regain your footing more quickly  and being better at the kind of discussion with loved ones that prevents endless miscommunication from adding up to a mountain of pain.

I don’t know when I’ll truly reach that level of strength. But for now I’m leaning hard on all my coping tools, including the music and the praying.

Two Days, Three Shitty Anniversaries And One Bloody Month

Earlier this month I wrote about two sad anniversaries: the deaths of Kurt Cobain in 1994 and Layne Staley in 2002. But today — April 19, and tomorrow, April 20 — we have a trio of tragedies to remember.

Mood music:

Full disclosure: I’m about to steal liberally from Wikipedia.

April 19, 1993: Waco, Texas

The Waco siege began on February 28, 1993, and ended violently 50 days later on April 19. The siege began when the United States Bureau of Alcohol, Tobacco and Firearms (ATF), accompanied by several members of the media, attempted to execute a search warrant at the Branch Davidian ranch at Mount Carmel, a property located 9 miles (14 km) east-northeast of Waco, Texas. On February 28, shortly after the attempt to serve the warrant, an intense gun battle erupted, lasting nearly 2 hours. In this armed exchange, four agents and six Branch Davidians were killed. Upon the ATF’s failure to execute the search warrant, a siege was initiated by the Federal Bureau of Investigation. The siege ended 50 days later when a fire destroyed the compound when a second assault was launched. 76 people (24 of them British nationals) died in the fire, including more than 20 children, two pregnant women, and the sect leader David Koresh.

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April 19, 1995: Oklahoma City

The Oklahoma City bombing was a terrorist bomb attack on the Alfred P. Murrah Federal Building in downtown Oklahoma City on April 19, 1995. It would remain the most destructive act of terrorism on American soil until the September 11, 2001 attacks. The Oklahoma blast claimed 168 lives, including 19 children under the age of 6, and injured more than 680 people. The blast destroyed or damaged 324 buildings within a sixteen-block radius, destroyed or burned 86 cars, and shattered glass in 258 nearby buildings. The bomb was estimated to have caused at least $652 million worth of damage. Extensive rescue efforts were undertaken by local, state, federal, and worldwide agencies in the wake of the bombing, and substantial donations were received from across the country. The Federal Emergency Management Agency (FEMA) activated eleven of its Urban Search and Rescue Task Forces, consisting of 665 rescue workers who assisted in rescue and recovery operations.

Within 90 minutes of the explosion, Timothy McVeigh was stopped by Oklahoma State Trooper Charlie Hanger for driving without a license plate and arrested for unlawfully carrying a weapon. Forensic evidence quickly linked McVeigh and Terry Nichols to the attack; Nichols was arrested and within days both were charged. Michael and Lori Fortier were later identified as accomplices. McVeigh, an American militia movement sympathizer, had detonated an explosive-filled Ryder truck parked in front of the building. McVeigh’s co-conspirator, Terry Nichols, had assisted in the bomb preparation. Motivated by his hatred of the federal government and angered by what he perceived as its mishandling of the Waco Siege (1993) and the Ruby Ridge incident (1992), McVeigh timed his attack to coincide with the second anniversary of the deadly fire that ended the siege at Waco.

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April 20, 1999: Columbine High School

The Columbine High School massacre (often known simply as Columbine) occurred on Tuesday, April 20, 1999, at Columbine High School in Columbine, an unincorporated area of Jefferson County, Colorado, United States, near Denver and Littleton. Two senior students, Eric Harris and Dylan Klebold, embarked on a massacre, killing 12 students and 1 teacher. They also injured 21 other students directly, and three people were injured while attempting to escape. The pair then committed suicide. It is the fourth-deadliest school massacre in United States history, after the 1927 Bath School disaster, 2007 Virginia Tech massacre, and the 1966 University of Texas massacre, and the deadliest for an American high school.

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April is also a bloody month for other days, like the Virginia Tech massacre on April 16, 2007 and the start of such bloody conflicts as the American Revolution and the Civil War. I could mention dozens of other bloody events that happened in April, but I think this is quite enough for now. If you want a fuller accounting of the bloodshed, check out this article by Chaotic Ramblings

I pray for everyone who died in those tragedies. As I write this, the sun is shining through my window, warming my hands as I pound away on the keyboard. I’m going to make this a good day, despite those bad memories.

I suggest you do the same.

A Death Survival Guide For Novices

A friend is reeling from the death of a grandparent. Outliving your older family members is considered part of the natural order, especially if it’s a grandparent. But if it’s your first taste of death, it’s got to be pretty devastating.

Having experienced more than my share of friends and family dying, I figured a few words are in order.

Mood music:

I got my first taste of death the hard way, losing my brother Michael when I was 13. I knew of family deaths before him, but I was far removed from them. My grandfather — who I was named for — died some nine months before I was born. My parents wanted to name a child in his honor, and so here I am.

Losing a brother was not the natural order of things, obviously. The grief from my parents wasn’t the normal grief I later came to expect with the passing of grandparents and 70-something uncles. It created dysfunction that haunts the family to this day.

So when my great-grandmother died in 1994 — a few hours shy of my 24th birthday — I thought it would be easier to deal. It was, but it still sucked. Two years later, my other grandfather was gone, followed less than two years after that by my paternal grandmother. By maternal grandmother was gone a few years later. In between all that, my best friend died, followed a few years later my another friend.

I’ve learned a few things from all that death. I hope the following takeaways will be helpful to my friend:

1.) Let it suck. Don’t be a hero. If you’re feeling the pain from losing your grandmother, let it out. You don’t have to do it in front of people. Go in a room by yourself and let the waterworks flow if you have to. Don’t worry about trying to keep a manly face around people. You don’t have to pretend you’re A-OK for the sake of others in the room.

2. Don’t forget the gratitude. When someone dies, it’s easy to get lost in your own grief. There’s even a self pity reflex that kicks in. Try to take the time to remember how awesome your loved one was. Share the most amusing memories and have some laughs. The deceased would love that. And you’ll feel more at peace when you remember a life that was lived well.

3. Take a moment to appreciate what’s STILL around you. Your girlfriend. Your friends. If the death you just suffered should teach you anything, it’s that you never know how long the other loves of your life will be around. Don’t waste the time you have with them, and, for goodness sake:

4. Don’t sit around looking at people you love and worrying yourself into an anxiety attack over the fact that God could take them from you at any moment. God holds all the cards, so it’s pointless to even think about it. Just be there for people, and let them be there for you.

5. Take care of yourself. You can comfort yourself with all the drugs, alcohol, sex and food there is to have. But take it from me, giving in to addictions is nothing but slow suicide. You can’t move past grief and see the beauty of what’s left if you’re too busy trying to kill yourself. True, I learned a ton about the beauty of life from having been an addict, but that doesn’t mean I’d ever wish that experience on others. If there’s a better way to cope, do that instead.

6. Embrace things that are bigger than you. Nothing has helped me get past grief more than doing service to others. It sounds like so much bullshit, but it’s not. When I’m helping out in the church food pantry or going to Overeater’s Anonymous meetings and guiding addicts who ask for my help, I’m always reminded that my own life could be much worse. Or, to put it another way, I’m reminded how my own life is so much better than I realize or deserve.

This isn’t a science.

It’s just what I’ve learned from my own walk through the valley of darkness.

I’ve learned that life is a gift to be cherished and used wisely.

I’ve also learned that it hurts sometimes.

That’s OK.

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:

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.

Small Victories

Duncan and I took my father on a little walk around Deer Island yesterday. Dad still struggles from the stroke he had last year, but days like yesterday I admire his fighting spirit.

Mood music:

I’ve been reluctant to take him on long walks, mainly because I don’t want him taking a nasty spill on my watch. But it was a beautiful spring day and he was eager, so who was I to argue?

Deer Island is an interesting place. One of the nastiest prisons in Massachusetts history used to be there. Now it’s the site of a massive water treatment plant — the facility credited with making Boston Harbor far cleaner than it was in past decades, when raw sewage used to get pumped into the harbor.

Dad moved slowly, but he was steady. He was telling us about the new tennis balls he just put on his walker. By the end of the walk, those tennis balls were toast, dragged to tatters.

Duncan enjoyed walking on the rocks, and spent the time talking about coordinates — something he is currently learning about.

We had to take frequent rests, as Dad can only take so much at once. But he was determined to go at least a mile.

Dad struggled toward the end, stopping every few feet. When it was over, he collapsed into the passenger seat of my car. But by then, he had gone more than a mile.

Not bad for a guy who needed a wheelchair to get around just a few short months ago.

Sometimes, it’s the smallest victories that count the most.

Layne Staley, 10 Years Later

“What’s my drug of choice? Well, what have you got?” Layne Staley, Alice in Chains

While I was busy honoring Kurt Cobain’s memory yesterday, I forgot that the day also marked 10 years since Alice In Chains frontman Layne Staley was found dead.

Mood music:

Like Cobain, Staley had a big impact on me in the early 1990s. But while I identified with Cobain’s depression, I identified with Staley for his inability to keep his addictive demons at bay.

I can’t tell you how many times I listened to the “Dirt” album while I binged myself sick. It seems like an unfair comparison, because Staley’s demon was heroin. Mine was compulsive binge eating — a destructive form of addictive behavior in its own right, but not necessarily from the same depths of hell heroin came from.

Staley’s lyrics seeped deep into my soul. When he screamed his vocals, I could identify the pain that came from deep down. I’m convinced that pain gave him the power to sing the way he did.

My writing taps a similar source within me, but the source is a lot more muted, less despairing, because I have something I don’t think he had — faith.

But as a 20-something, I couldn’t tell the difference. I felt like my demons were as vexing as his. When you’re younger, that’s the kind of self-important thinking you get into.

Before I found recovery, my demon would start harassing me long before getting to the scene of the junk. Forget the people who would be there or the weather and surroundings. All I’d think about was getting my fill of food. Then I’d get to the event and get my fill from the time I’d get there to the time I left. I’d sneak handfuls of junk so what I was doing wouldn’t be too obvious to those around me.

Halfway through, I would have the same kind of buzz you get after downing a case of beer or inhaling a joint deep into your lungs. I know this, because I’ve done those things, too. By nightfall, I’d feel like a pile of shattered bricks waiting to be carted off to the dump. Quality time with my wife and kids? Forget it. All I wanted was the bed or the couch so I could pass out.

I imagine Staley felt something similar much of the time, though I’m told by those who have kicked smack addictions that you don’t really care about anything when you’re high, because it’s like being under a warm blanket. The problem is that you spend the rest of your life trying to feel that way, and the only thing that works is more and more smack.

In the end, I know you can’t fairly compare the two addictions. I only know how mine made me feel, and whenever I listened to Staley scream, I felt like someone else got it, and that I wasn’t alone.

Thanks for that, Layne. I hope you’re at peace wherever you are.

I’d Like To Blame My Parents, But…

I’ve been frustrated lately over my inability to balance how I express emotions. Forget balance — I suck at emotion, period.

Mood music:

With my kids I get too emotional at times, showering them with kisses and telling them I love them a lot more than they probably care to hear. Duncan’s refrain is usually, “I know already, Dad!”

With my wife I’m not emotional enough. When times get difficult — and even when they’re going well — I tend to clam up. I share my feelings in headline form or I don’t share at all. That’s pretty whacked considering all the opening up I do here.

I’ve been trying to solve this puzzle for years, but I’m no closer than where I started.

Sometimes I get really angry with my parents for this.

My mother was the smothering type. She wanted me close by at all times when I was a kid, and would get in my personal zone at the wrong times, hugging me when I wanted to be left alone. I don’t entirely blame her for this. She lost another child, and she was clinging to what she had left with everything she had. The effect was suffocating, and I ultimately rebelled.

My father, on the other hand, had no clue about expressing his feelings. Whenever I hit a milestone (in adulthood the milestones were promotions and raises at work), his response was always a detached, “That’s it?” If I expressed fatigue over life’s difficulties, the response — instead of relating his experiences and how he pulled through the tough stuff — was always, “It’s good for you.” My paternal grandmother was the same way. As the tired old saying says: The apple never falls far from the tree.

In the area of emotional balance, you could say I lacked role models — which is why I want to punch the walls a lot lately. I’m in my 40s and need to figure these things out with no prior experience. I think my trouble expressing emotions is why I started writing this blog. I can write my feelings and share just fine. But in face-to-face conversation, I flounder.

Some people would dismiss this as unimportant. No one is perfect at this, after all. Like everything else, this is life.

But I’m really starting to worry about doing to my wife what my parents did to each other. I’m worried that I’ll do to my kids what my parents did to me — ensuring that they grow up to start another generation of dysfunction.

But here’s the thing: I’m a grown man on the fast track to middle age. Too much time has passed since I left home for me to keep blaming everything on my parents. They did the best they could with the tools they had, but fucked up a lot. All parents do.

I’m a big boy now. It’s time to take ownership.

When Difficult Kids Turn Out Alright

Readers know by now that Erin and I have a big challenge — helping our second child manage ADHD. He’s often difficult. Fair enough. I was a difficult child, too.

Mood music:

Duncan is actually tame compared to the 8-year-old me. He’s never filled up my gas tank with a garden hose. He’s never lit his plastic toys on fire, nearly burning down the house in the process. He’s never stolen money from his Dad’s wallet. He doesn’t bring home revolting report cards. That stuff was all me.

But it’s easy for me to forget those things when I’m the parent. When Duncan leaves a path of destruction around the house, causes scandal in the schoolyard by telling classmates Santa isn’t real or earns a note home from a teacher concerned that he’s not playing well with others, all the worries start about where he’s headed in life.

But I have hope.

Erin found a blog post from Rick Ackerly — a nationally recognized educator and speaker with 45 years of experience working in and for schools, dealing with kids of every harrowing stripe. It’s about how difficult children often grow up to be enormously successful adults.

He writes about an encounter he had on a flight with a CEO and three other high achievers. They talked about how they were bratty, rebellious children, and how the resulting experiences proved more valuable than a college education. He then says:

I put these stories together like this, not to try to convince parents and other educators that being bad is good, nor that one should hope for a difficult child, but to remind us of three critical education principles:

1) Difficulty, conflict, struggle, mistakes, disappointment and failure are where most learning comes from—usually the most important learning.

2) Difficulty is the life we are preparing our children for. We naturally hope that our children will be happy and successful, but that is a mirage–and we know it. The life they will get is a life of challenge, and the best preparation for challenge is challenges. When it’s harder for us, it might be better for them.

3) Raising difficult children might interfere with the rainbow life we were hoping for, but it might be better for the world. Remember Sarah Elizabeth Ippel, the willful child who started a charter school in one of Chicago’s poorest neighborhoods when she was 23 and now at the age of 30 is running the thriving, vibrant Academy for Global Citizenship serving 250 students, 81% of whom are low income.

Someday I want to be on a flight from Chicago to Decatur with the Spanish teacher, the CEO, and your formerly difficult child.

Having a difficult child may be difficult, but it is not the worst thing that could happen to you.

If you haven’t seen his blog yet, you need to do yourself a favor and bookmark it. Every parent should read his work.

One would think I don’t need such reminders. Despite my rough patches, I turned out fine. I have a beautiful family, a successful career in journalism and I’m in the best health I’ve been in for years — despite all my self-destructive behavior.

But as I said, when you’re the parent, you forget and need lots of reminders.

Thanks for that, Mr. Ackerly.