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Amputee OT Shows Us How to Have Fun With Adversity

I found some information about Christina Stephens, the amputee who made herself a limb out of LEGOs. The video of her making the leg was inspiring on its own, but there’s more to this woman than becoming a YouTube sensation.

It turns out she has made a series of videos about life as an amputee. Here’s footage of her the day after her amputation:

Her YouTube channel has dozens of clips of her learning to live without part of her leg and mastering the use of her new prosthetic. She also has a Facebook page.

Stephens, a practicing occupational therapist, clinical researcher and peer educator, was working on her car in mid-January when its supports gave way and the car crushed her foot. In one video, she shows viewers her black toes and explains why she chose to have her lower leg removed instead of trying to salvage it.

Through it all, her humor and grit is on full display. The LEGO project has gotten much of the attention because LEGOs are fun. But most of these videos are fun, because that’s the approach she decided to take. I’ve never lost a limb, but it has to be one of the more traumatic experiences a human being can have. I’m sure she’s having her share of inner pain. But she’s showing others that something like this isn’t the end of the world, that living life to the full is never beyond our reach.

It comes down to attitude.

We’ve seen a few stories about amputees displaying grit and courage in recent months, in the wake of the Boston Marathon bombings. They smile for the camera as they go through the painful process of getting on with artificial limbs. One of the best examples is that of Jeff Bauman, who lost both legs in the attack. Some of the most dramatic photos of that day are of him being rushed from the scene in a wheelchair, his legs clearly blown to shreds.

I’m sorry they’ve gone through this. But I’m also grateful to them for showing us the way. We’re all lucky to have them around.

Amputee OT
Photo courtesy of Amputee OT.

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Be The Blessing

This was originally written after the 2013 Boston Marathon Bombings. Many tragic events have happened since then, most notably the COVID-19 pandemic and its lockdowns, the resulting economic calamity and now race riots in cities across America after the death of George Floyd, a black man who died after being pinned down by a white officer. Now more than ever, we must put aside hate and be a force for good in the lives of our friends, family and neighbors. In other words, be the blessing.

***

I get frequent messages from readers. One was from someone tormented by current events — be it the government spying on citizens or any number of potential calamities.  She asked how to make it stop.

I didn’t have an answer. I have no psychiatric degree — only my personal experiences.

Mood music:

The reader’s message said, in part:

I deal with scrupulosity, ruminations over heaven and hell, conspiracy theories and intrusive thoughts. It’s gotten to the point where it’s become impossible to function when I read a new headline about what the government is doing to us. I get depressed and I get obsessed. I see my intense fear and read things about the government tracking us, and suddenly I regret all the research I did about conspiracies over many years. I don’t know if I even believe it all, but I somehow feel like the more I know, the more I can somehow save my family.

I don’t know what to do about current events. I don’t know how to save my family from government tracking (even though we’re not doing anything illegal or anything that would be of concern), yet I feel like my OCD is making me out to be this inadvertent target due to the fact that I’m always obsessively searching through conspiracy websites attempting to find “answers.” How did this stop? How do you deal with this?

I can relate to her fear of current events. It’s something that used to paralyze me on a regular basis. I felt the need to give an answer broader than the fear of current events part, because to me that’s merely a symptom of the bigger problem people like us must confront. And so I mentioned how, for me, the biggest helpers have involved:

I noted how, even after adding these tools, I still struggle. Some days I forget to use some or all of those tools for a variety of reasons. Using them actually takes more energy than I have some days. And if something really big dominates the news, it will still have an impact on me. The Boston Marathon bombings come to mind.

After I hit “send,” I remembered something a friend wrote not long before she died of cancer. Renee Pelletier Costa wrote about her despair over leaving all the people in her life and how her pastor replied simply, “Then don’t leave.” That statement made her realize that in a world she couldn’t control, she could still use whatever time was left to be a blessing to others.

That was a huge point for me as an OCD sufferer. I can’t control most of what goes on in the world around me, but I can still carry on each day in ways that make the difference to family, friends and colleagues. It can be as simple as saying good morning to someone and holding a door open for them. You can talk to them about their struggles — or better yet, just listen to them. Bring them a coffee. Make them laugh. Any of these things go a long way when someone’s having a shitty day.

The NSA will keep spying on us. Stocks will rise and fall. But none of that can keep me from being there for my family, from playing guitar and doing other things that make life worth living.

To the best of my ability, I choose to be the blessing. What happens from there isn’t up to me.

Boston Marathon Explosion

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Black Sabbath and the Sick Bed

Wherein the author stays still and rocks out.

Only a week into the new job, I got blasted with the stomach bug from Hell. It started coming on Monday night and kept me up all night and in bed all day Tuesday. Those who know me will tell you I get up before 5 a.m. and am usually working by 6. To spend a whole day in bed is unthinkable.

Yet that’s what I did. The bed and then the couch. And I had the company of Ozzy Osbourne, Tony Iommi and Geezer Butler, three of the four original members of Black Sabbath.

Mood music:

They just released their first album together since 1978. The whole thing is available for free on Spotify, so I figured why not? I wasn’t going to be able to do anything else.

Wow. They really nailed it. Made being sick a little less frustrating. That’s what music does for me, helps me cope with life’s unpleasantries.

When I listen to a new album from an old band, I always start thinking about the musicians’ back stories. Ozzy’s battles with drugs and booze are legendary at this point, and Iommi just spent a year fighting cancer. I recently read a Guitar World interview with him on the subject. His diagnosis came after he found a lump in his groin. The timing was typical: He said he had been having one of the best years of his life, with Sabbath gearing up to make a new album. Treatment was hard, but he kept going. He put his pain into riffs for the new album, and let me tell you, those riffs are ferocious.

People don’t always think of this particular power of music: The musician goes through illness and other adversity and uses the songwriting process as therapy. The music then gets listened to by a guy thousands of miles away whose stuck in bed for the day.

It’s a poetic cause and effect.

As I write this I’m sitting up in a chair. Not yet fully over the bug, but the music has given me a nice shot of energy and allowed me to get something useful done.

In fact, I’m going to go play my guitar. I can’t riff like Iommi can, but it’ll feel good all the same.

Black Sabbath 13

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Five Things That Overwhelm Me

Though I got rid of the fear-based anxiety that kept me indoors and afraid of everything, I still have moments when I get overwhelmed.

Mood music:

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Call it sensory overload or severe impatience, if you will. Or perhaps the latter two are mere byproducts of the first. Here are some examples:

  • Long lines. Whether it’s waiting for a seat in a restaurant, for entry into a movie theater or for boarding a boat, long lines make me crazy inside.Waiting to board the boat
  • Traffic. When the highway becomes a parking lot, I feel claustrophobic. It’s worse when I’m surrounding by a lot of trucks, because they make it difficult to see what’s happening farther up the road.Traffic on the Zakim Bridge
  • Housework. When there’s a lot of cleaning and fixing to do around the house, my brainwaves get scrambled and it becomes difficult to put the tasks in an order that makes sense. So I dart all over the place doing things haphazardly.Cleaning stove
  • Listening to long-winded people. This one seems mean, and I don’t mean for it to be. But when a person corners me for what turns into a long, long story, I start to scream inside. It makes me feel trapped and I feel like the rest of the world is passing me by.Long-winded people
  • Long meetings. I’ll be honest and tell you that business meetings have never been a favorite of mine. True, they are necessary, but it always feels like I could be getting 10 other things done during that time. What really rattles me is when a meeting goes longer than scheduled. I start to fidget in my seat and lose the ability to hear anything anyone is saying.business meeting

Now you’re probably asking yourself, “What does he do about all this?” The answer is not much. These are all things that are part of life. Avoiding them would mean I wouldn’t be living mine. I’d be a recluse, never achieving anything and missing out on a lot of good stuff.

So I put on my game face and trudge on.

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My Therapist Fired Me

For the first time in many years, I have no therapist. No shrink to call my own. The guy who worked me through five years of challenges officially fired me Friday.

Mood music:

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Maybe it was all the times I walked into his office with a huge cup of Starbucks bold. He was always on me about quitting coffee because it’s “just another drug.” Bringing coffee to my appointments was my way of telling him to fuck off.

Maybe it was that I constantly forgot appointments. He’d call five minutes after an appointment was scheduled to start and I’d always be like “Uh, that was today?” He never charged for missed appointments, so clearly I was starting to cost him real money in lost co-pays.

The truth is far less dramatic than all that: He’s retiring and moving to a sunny place in the South. I expected him to talk about therapists in the practice I could see next, but instead he told me sternly, “You have no business being here.”

He didn’t mean forever. When autumn hits and the seasonal depression starts tapping me on the shoulder, I’ll probably need to resume therapy.

But for now, and for the next several months, I’m done.

That doesn’t make me cured of OCD or the unpleasant byproducts. I still have my off days. But I now have the coping tools I need to manage it all, and his verdict is that I’m using the tools well for the most part.

I want to thank my therapist for the last five years. He taught me a ton about how the brain works, what OCD and other disorders look like with pictures of brain scans and illustrations showing little nodes that don’t fire commands to other nodes properly. He made it concrete. I was no longer a freak for having OCD. I had a medical condition that affected my thought processes. A treatable condition at that.

He showed me how different medications work for specific disorders and helped me adjust my own meds.

I’m in a much better place today, thanks to him. And now he has told me to stop therapy — if only for a few months.

I would have celebrated with a drink, but I no longer drink.

Instead, Erin and I went to the Newburyport Literary Festival Saturday afternoon and attended talks by authors Matthew Quick, Evan Roskos and David Yoo.

Those authors write about their own struggles to manage depression, to overcome all the fears and insecurities of youth and to find acceptance. They do it differently than I do. They use fictional characters who mirror themselves and people in their lives. I take the direct, nonfictional approach. Both types have their place, and listening to them talk made me feel like I was listening in on their own therapy sessions.

We had our afternoon date planned before Friday, but it turned out to be an appropriate way to celebrate.

There are still enough people out there who have been where I’ve been and are willing to share what they’ve learned. Therapy or not, my support system continues to thrive.

Dr Bird's Advice for Sad Poets

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Julian Assange: Autistic Hacker Or Just An A-hole?

Last year I wrote a post about a report suggesting autism is an affliction of the brilliant. One man mentioned as an example was WikiLeaks founder Julian Assange, who has described himself as having the “hacker’s disease.” Yesterday, a reader’s comment inspired me to revisit the issue.

Mood music:

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The reader said in part:

This compares a neurological disorder to genius people whose curiosity takes finite state machines to places that their creators never imagined. How’s that? Julian (who I met once) is an egomaniac and an arrogant prick, and Daniel (who I do know) and the rest of them have given him the Heisman. If he’s representative of hackers, then I’m cancelling my membership! Kids have always been a PITA for parents, especially ones that “won’t behave”. First it was “hyperactive” – then it was “ADD” then “ADHD”. It’s always some excuse for f**ked up parents who hit their kids, kids who are too smart and see through their parents’ bullshit.

 

A friend in the security community once took me to task for using the autism angle because he felt it was unfair to compare someone with a neurological disorder with me and my OCD struggle. He was right that the two are vastly different things, but for me it wasn’t simply about comparing myself with someone who has autism. It was more about my interest in people who have abilities within them, diseases and disorders be damned.

We’ve seen countless stories about people who rise above physical and mental limitations to achieve greatness, and I’m always inspired after hearing about them.

As for the reader’s comment, I agree with one thing: A lot of parents do make excuses for kids who don’t fall in line, and that often leads to a misguided diagnosis. But that’s beside the point.

Is something like autism a hacker’s disease? I have no idea. Frankly, I don’t care.

Each of us has something from within that can either hold us back or propel us forward: A blessing hidden inside a perceived curse.  That’s what OCD has been for me: A curse when left to rage out of control, and a blessing when managed and properly harnessed.

Some of us are afflicted with disorders that can’t be managed so easily; maladies that force people into wheelchairs or psychiatric hospitals. The victim has little control over it, and is trapped. For some, the affliction attacks the nerves and muscles. For others, the disease targets the brain and disables basic functions. In both cases, all or part of the brain still burns brightly, and the individual is able to ride that to something good. Like Stephen Hawking. And, in some cases, like hackers.

The one constant is that we’re all handed challenges in life. If the mind works, what matters from there are the choices we make and the lengths we’re willing to travel to rise above.

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Human Tourniquets And Freaks Who Love Them

I originally wrote this three years ago. Looking at it again, it’s an important post describing a time when not even best friends were safe from my insanity. I’ve updated it for the present. 

Mood music:

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You know the type. They hang  out with people who act more like abusive spouses than friends. They are human tourniquets. They absorb the pain of their tormentor daily and without complaint.

This is the story of the man who used to be my tourniquet.

I met Aaron Lewis in 1985, my freshman year of high school. He was the kid with really bad acne. But nothing ever seemed to bother him. I’m sure a lot of things bothered him, but he was very good at hiding his feelings.

That made him the perfect target for a creep like me.

Don’t get me wrong. He was a true friend. One of my best friends. We shared a love of heavy metal. We both got picked on, though unlike me, he didn’t take it out on other, weaker classmates.

We hung out constantly. He practically lived in my Revere basement at times. I let him borrow my car regularly. And if I drank, that was OK, because he almost never drank. He could be the driver.

Except for the time I encouraged him to drink a bottle of vodka. He had just eaten a bag of McDonald’s and I told him I was sick of him trying to get buzzed off of wine coolers. This night, I told him, he was going to do it right. He got smashed, and proceeded to puke all over my basement — on the bed, the carpets, the couch, the dresser. That was some strange vomit. It looked like brown confetti.

I sat on the floor, drunk myself, writing in my journal. I wrote about how drunk Aaron was and prayed to God that he wouldn’t die. Man, would I love to find that journal.

We saw a lot of movies together. We watched a lot of MTV.

He was the perfect counterweight to Sean Marley. Marley was essentially my older brother and I spent a lot of time trying to earn his approval. I didn’t have to do that with Aaron. He didn’t criticize. He didn’t judge. He just took all my mood swings on the chin.

I would sling verbal bombs at him and he’d take it.

I would slap him on the back of the neck and he’d take it.

I was evil. And he took it.

That’s a true friend.

Aaron got married, moved to California and has a growing family. He’s doing some wonderful things with his life. I cleaned up from my compulsive binge eating, found my Faith and untangled the coarse, jagged wiring in my brain that eventually became an OCD diagnosis.

If he’s reading this, I apologize for all the times I was an asshole. I hope somewhere in there, I was a good friend, too.

Buddies
Left: Aaron Lewis. Right: His asshole friend
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How To Avoid Becoming #RSAC Roadkill

Last year was a first: I had a stay-at-home vacation a week before flying out to a big conference. We took the kids to the Museum of Fine Arts in Boston and did a lot of relaxing. It worked so well I’m doing it again.

Mood music:

The kids are on their February school vacation, which was my main reason for choosing this week. That it fell the week before RSA — one of the biggest security conferences of the year — was pure luck. That it’s happening two years in a row is even luckier.

I always run myself ragged the week before a conference. A couple years ago it caught up with me. This time I have a chance to soak up some quality family time and rest my brain before getting on the plane.

That should allow me to be at the top of my game in San Francisco next week. It certainly did the trick last year.

Conferences have always brought out the the good and bad sides of my OCD. On a professional level it gives me the extra push to write more, network more, stay awake later for said networking, and get up and at ’em early. It also takes over the parts of my brain that manage my pacing and ability to stop and breath.

Not helping is that usually, the week before, I work in overdrive mode to get as much business out of the way as possible. In doing that, I’m already half burned before my plane takes off.

I won’t always get to vacation right before RSA like this. So I’ll be making the most of this week.

I’m especially going to need it this year, because a couple hours after the plane lands Sunday, I’ll be darting back and forth between BSidesSF, the hotel, the Moscone Center registration area and quite a few evening events.

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The Snow Day Has Been Cancelled

Weather forecasters said we’d get a lot of snow, but only a dusting fell around here. School is on after all, and the kids will surely be disappointed. It goes to show that sometimes life doesn’t work out as planned.

Mood music:

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As a man with OCD, I’ve learned this lesson the hard way. When you have a brain that never stops thinking, you tend to expect certain things out of your day. When the expectation is a bad one and isn’t fulfilled, it’s a huge weight off the shoulders. Expect to be told that you have cancer and then learn it’s just a benign lump is freeing.

But when you expect something good and it doesn’t happen — a snow day, a night out, a promotion at work — the sudden change of events can be devastating to a guy like me.

I know the disappointment Sean and Duncan will feel when they wake up to a day of school after all. I experienced that let-down often enough as a kid. Many of us have. One time in fourth grade, I was so upset that a snow day didn’t materialize as expected that I made myself sick. I got to stay home that day after all, but I spent it throwing up and cowering under the assault of a migraine. It was a sign of things to come.

As I’ve gotten older and gained more control over my OCD, I’ve gotten a lot better at managing the expectation game. At the least, I’m able to proceed with my day and make the necessary adjustments without the old sense of dread and the feeling that maybe God hated me.

But I still get thrown for a loop sometimes when expectations don’t pan out. A couple of weeks ago, I was gleefully anticipating a Saturday night out with Erin watching friends’ bands play. Because of illness things didn’t work out and I was bitterly disappointed. I carried a bad mood into the next day.

It can happen to all of us once in a while. But when you have something like OCD, every emotion is exaggerated.

I’m glad I’m better at getting over it. Hopefully, my kids will get better at it, too.

School Bus in the Snow

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Five Traveling Tips for OCD Heads

Staying healthy while traveling has never been easy for an OCD case like me. When I traveled to New York in June, I pushed myself to the point where I was lying on the floor of the airport as I typed away, waiting for the flight home. My LA trip the month before ended pretty much the same way.

I don’t really sleep on these trips. There’s too much to do and see, too many interesting people to talk to. I work hard, but I always make time to catch up with friends and family in the city I’m visiting. Next week I fly to Las Vegas for the Black Hat and BSidesLV security conferences. I won’t get destroyed on the road as badly as I used to, because I’ve learned to follow these five steps:

Mood music:

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  • Don’t eat junk. This one is easier for me because I don’t eat flour and sugar. But it’s still a challenge because I’m not weighing my portions on the little scale like I do at home. That makes it easy to overeat. For the most part, I’ve been able to hold it together, and the better I do, the better I feel when I get home. When I used to junk it up on the road, I’d be useless the first three days at home.
  • Pack lightly. I used to try cramming most of my wardrobe into the suitcase, along with five books, boots, shoes and so on. I feared being caught far from home without enough shirts and socks. Now I keep it light because I can breeze through the airport and get on and off the plane more quickly. If I run low on pants, I’ll wear the same pair more than once. Many of you do this but won’t admit it. Shirts are a different story. Wearing the same shirt twice would be gross because you can’t hide the stench your armpits leave behind.
  • Wear sleepwear to the airport. I usually sleep in cut-off gym pants and a t-shirt. I wear them to the airport, too. That way I don’t waste time in the security line removing the belt, rings and bracelets. I keep the jewelry in the suitcase and avoid laced footwear, too. If you have business meetings straight from the airport, you can’t do this. That’s why I never, ever book meetings for the day I land.
  • Remember the music. The radio stations you get on the airplane almost always suck, so remember the iPod. For me, music is the required way of passing the time on a five-hour flight.
  • Use the first day to screw your head on straight. The first day in the city I’ve traveled to is not for business briefings and conference calls. I use the time to explore the city I’m in for a couple hours, then I go back to the hotel and look over the agenda for the coming days. At night I meet up with friends, family and business associates for dinner.

From there, I’m ready to work my ass off.

And when I get home, my recovery time is much faster than it used to be. With the busy family life I have, that’s pretty essential.

Suitcases