Category Archives: CFS/ME/SEID/WTHIITIH

Last year, actress Gal Gadot became an icon to some when her movie Wonder Woman became the first major mainstream theatrical superhero movie to feature a female protagonist.

Gal Gadot

Last week, some of the same people who lauded her were far less excited about her tweet in reaction to the death of Stephen Hawking.

“Rest in peace Dr. Hawking. Now you’re free of any physical constraints.. Your brilliance and wisdom will be cherished forever,” she wrote.

The reaction among some was some degree of anger. The post, they said, was ablist. They said it implied that a person confined to a wheel chair can’t live a full life. It implied that those with chronic or disabling illnesses are somehow less than they could be, less than others.

With deep respect to those who crave out amazing lives because of illness or disease, I disagree.

Hawking became what he was both because and in spite of his illness. He’s one of the greatest scientific minds of his era. If not for his ALS, he probably would’ve done something different with his life. But the ALS made it harder to accomplish what he did.

When skiier Amy Purdy finished second in Dancing with the Stars in spite of having no feet, a lot of people were impressed. That she trained while participating in the Winter Paralympics made her accomplishment even more impressive. Yet, in the shadow of that accomplishment, there was a cry from some of disability porn toward those who watched and were awed.

Amy Purdy in Dancing with the Stars

Closer to home (for me, at least), author Laura Hillenbrand suffered from Myalgic Encephalomyelitis (ME), more commonly known as Chronic Fatigue Syndrome, while she wrote Seabiscuit and Unbroken. She never actually met Louis Zamperini, the subject of Unbroken because she was housebound. She worked with him via Skype, phone calls, and email.

Zamperini said that she probably did a better job telling his story because she was a prisoner, too, unable to leave her home. When Zamperini died, he willed his Purple Star to her.

In 2015, I was diagnosed with ME. I worked from bed some days and managed to complete a very long and difficult system implementation, then support a system that was so buggy, the manufacturer replaced it with a new product a year later. Looking back, the only reason I got the work done was that I refused not to.

At the time, I didn’t know I would recover. Some days I had to stop and rest on my way to the bathroom. Every weekday morning, I would wake to despair because of what lie in front of me.

I’m a different person because of that experience. My heart softened and my empathy grew. It changed my outlook of the world and it’s still working on my outlook on God–which is continuing to change my outlook on the world.

I figured I’d eventually become bed-ridden. I’d probably lose much of my ability to earn a living. I’d figure something out to stay employed–I knew that much. But that something would be harder than anything I might’ve considered before that.

You wouldn’t have insulted to me to wish I might overcome that condition. I wished it, too. My life wasn’t diminished when by the grace of God, misdiagnosis, or whatever, I slowly recovered from that circumstance.

I accepted whatever was going to happen, but never for a moment did I stop hoping and praying it would change.

The bottom line is that people who achieve with chronic illness or disability are, in fact, amazing. From Dr. Hawking, to Amy Purdy, to a friend of mine whose chronic illness has made her less active than she’d like. Admiring them isn’t disability porn. Wishing them recovery isn’t devaluing them. And accepting them where they are and caring about the person they are is what God commands.

The reaction to Ms. Gadot is far too harsh.


Blowing a second chance a little bit

I think I’m blowing it.

Not in a big way. Just a little, here and there.

A little more than four months ago, I returned full time to work after being on partial disability for a while. I had…something. Chronic Fatigue Syndrome. Myalgic Encephalomyelitis. Who knows? I’ve written about it before. On the whole, last year sucked. It was something you live through that has to change you.

And I have changed. I ran this morning. It was hideous out–it’s Florida, it’s June, it comes with the driver’s license. You get a hologram to make sure the license is real and the obligation to sweat your ass off when you run in the summer. To quote the great Inspector Todd (Beverly Hills Cop), you can see I don’t have any bit of it left.

(Actually, I do, but that’s a separate problem for a separate post.)

As I said, I ran this morning. It was awful. I hated it. And I loved it. I loved every sweaty, nasty second. I fully understand how blessed I am to be able to run five miles any day, regardless of the weather. I fully understand how blessed I am to walk across a parking lot without stopping to rest. I fully understand how blessed I am to be worried about whether it’s realistic for me to run in the Clearwater Marathon next year.

I got that part.

Last year, I had my life forcibly taken away for reasons I don’t understand. And then for equally unfathomable reasons, I got it back. If that happens to a person, that person has an obligation to be a steward of that experience.

I need to be a better steward.

I don’t have the joy part down.

There’s a lot of noise about how if God loves his people, why all the shit happens. I don’t know the answer to that. But I do know that if you believe in the Bible, it promises the shit. John 16:33 promises that in this world, you will know trouble.

I’m comfortable in saying that I received more than my share of trouble last year. I’m equally comfortable saying that the troubles that mattered have been taken away from me.

I should be more joyful. I want to be more joyful. Put a better way, how can I not be more joyful?

This isn’t me kicking my own butt for not being perfect. This is me wanted more for myself. And more for the people around me.

In this world you will know trouble. A promise. I don’t know why God doesn’t see fit to come down and fix that. But I know that by my choices, I can add to that trouble, I can turn my back on the trouble, or I can be something different than the trouble.

It’s too important to have the chance to push back the darkness and then pass on that opportunity.

I hope to do better. I hope to do better.


How I “overcame” ME

A friend of mine asked me to think about how I overcame ME and write about it. I’ve thought about this an awful lot. And my answer is still what it was: I have no earthly idea how I “overcame” ME. None.

A while back, while I was still sick, I told someone that I couldn’t beat this disease–you just don’t do that. It’s a vague soupy thing that still has no single way to diagnose. For me, the process involved me reading on what I might have, then going through tests and ruling things out. At the end of the process, that left ME. And as Sherlock Holmes is fond of saying, if you eliminate the impossible, whatever remains, however improbably, must be the truth. That’s how I was diagnosed.

Gratuitous Cumberbatch picture for the female readers

It’s possible I never had ME. It’s possible I had some kick-ass virus that no one’s identified yet. It’s possible I’m off my rocker and somehow told my body to shut down. Like I said, it’s a vague soupy thing.

I’ve read stories of people with ME. Many of the stories involved vibrant, active people who were suddenly afflicted with no symptoms and no warning. Many of them are house-bound and bed bound. Last year was brutal for me. But if I had ME, I had a very mild version of it. People who have the worst spend their days shut in dark rooms with no stimulation, their bodies pulsing with pain. That’s not artistic flourish or hyperbole. That’s what ME is like.

Severe ME is so bad that when Louie Zamperini–a guy who was a Japanese POW and the focus of Laura Hillenbrand’s book Unbroken–died, he gave her his Purple Heart, because of what she was going through.

You don’t overcome ME. It’s vital to understand that. It’s not a matter of will. The people who survive this gray, horrid torture day after day, have more will than I’ll ever think of having. If it were a matter of will, they’d have overcome it ages ago.

In plain English, I’m lucky. Or blessed. Or misdiagnosed.

The best I can say is I waited for an opening. Whatever I have gave me one, and I beat the hell out of it. So far, it’s working. But if I have ME, I could crash again at any second.

Every time I work out, I understand that it could very well be the last time. I know that when I go into the office again, it could be the last time. Every day I’m not afflicted is a gift.

The disease sometimes works that way–retreating, only to attack with even more gusto than before.

The only thing special about me is my luck.

To assume anything more is a dishonor to the people who suffer this hell every day of their lives.

I have to admit that I said why me? to myself at various times last year. And I say it again this year, too.

 


I can’t do Tough Mudder. It sucks, but I think I’m okay with it

This weekend is Tough Mudder, which I can’t do this year. Until 2015, this weekend would have been a central point on my calendar. After all, when you run during the summer in Florida, you need a pay off. Tough Mudder was mine.

The toughest beer you’ll ever earn. (Hey, that’s a pretty bad ass slogan.)

And then this year happened.

Never in the annals of Christopherdom has there been a year like 2015. Work’s been tough. My health has been a mess. And other things currently happening are the mini cherry on top of the regular-sized cherry on the sundae of suck that is my life.

And this weekend is Tough Mudder. Which I can’t do this year.

Not doing Tough Mudder is actually the easy part. Seriously, its supposed to be almost 90 this weekend. To hell with the ice water (good luck with that), fire slide, and live electrical wires. Who wants to run around in the mud when it’s 90 degrees?

He paid to that. And signed a death waiver.

The hard part is thinking about not doing Tough Mudder. In other circumstances, it would be thinking about that missed opportunity or lost job or ruined relationship. If you can manage the thinking-about part, (1) your liver won’t be the size of Montana and (2) you’ll have managed something far more impressive than getting an orange headband.

Your liver could be bigger than this.

For me, it starts with the obvious truth: I want to do Tough Mudder. I can’t. That sucks. Period. I get to be cranky and sad about that. I get to hold a little selfish grudge against the people who are participating. None of those things make me awful or selfish. They make me human. I love my friends who go with me for this, but it really pisses me off that they get to go and I don’t.

I’m angry. Deliciously, self-righteously, selfishly angry. Shit. Dammit. And son of a bitch.

The anger’s required. If you ignore it, it’ll leak out in places you don’t want.

Allowing for the anger also means I can experience it and move on to other things. Because I’m allowing myself anger, I can be genuinely happy for the people who’d normally be on my team. Not reluctantly because a decent person would be, but because I’m happy and excited for them.

Allowing for anger frees me to consider creative alternatives in my current situation. Tough Mudder broke their rules to allow an active-military member to use my entry this weekend. That’s pretty generous of them.

Allowing for anger frees me to let it go when I’m done. I got screwed by circumstance this year. Mightily. Screwed. Yes, there are people really suffering with ME/CFS who would love to have my problems. Yes there are a lot of people in far worse shape than I am.

All of that is immaterial. I played by the rules this year and I got screwed. And I get to be angry as hell about that.

And then I can let it go.

I’m thrilled to have run four Tough Mudders. I doubt I’ll ever enter one again, but who knows? The future is, as the cute blonde lady says, still unwritten.

November is the month of gratitude, so yes, I’m grateful for the four Tough Mudders I have run. Accepting the anger makes room for the gratitude. I’m grateful for the experience, the friends, and for what I found out about myself.

You can’t get to acceptance, creative alternatives, or gratitude if you don’t allow yourself anger. Even Jesus got angry. Even Jesus begged for another way. Even Jesus got pissed off and asked God why he’d been abandoned.

If Jesus can do it, so can I.

So can you.

Feel that anger. Acknowledge it. Experience it. Because once you’ve done those things and gone through that process, it’s a lot easier to let it go, find the silver lining and move on to the next thing.


Right now is about what you can do today

I can still do a vinyasa. The real deal. Start in plank, go to chaturunga, maybe throw in a push up every now and then, then go to upward dog. No knees on the matt. No cobra pose. The real deal for me (your mileage may vary and that’s perfectly okay).

Except mine was, you know, manly

I used to be able to do that as many times as Tony Horton ordered. No more. Six months from now, maybe I won’t be able to even do one. Or maybe I’ll do than I can now.

Right now, six months from now’s not important. Right now is about what I can do today. I came, I did the yoga. I feel good.

Right now is about what I can do today. It’s about me. Not about what that guy buzzing down the running trail did. It’s not about what the woman on her way into Orange Theory did.

I could have sat and felt sorry for myself for not being able to do those things, but I did what I could do. Some people can do a lot more. Some people struggle to get out of bed. But they aren’t helped and I’m not helped if I worry about what they can or can’t do.

Right now is about what I can do today. I can’t run 17 miles any more. I can’t pump out a dozen pull ups. I can’t do the mother of all our movements, jump knee tucks. I can’t do whatever torture the evil Shaun T has in mind. So what?

Jump knee tuck. The mother…

I could do yoga and I did it, to the best of my ability. You can’t do better than your best.

Life ebbs and flows. Sometimes you’ll find yourself blowing away what you’ve done before. Some days it’s a major victory just to get out of bed.

Whatever the limits are, that’s what they are. Done. End of story.

Wishing they were different, comparing your limits to what you did last year or to what others can do, that’s grounds for defeat.

Right now is about what you can do today.

Take care of today today and when tomorrow comes, worry about what you can do then.


Perspective

Editor’s note: This entry is kind of self-absorbed. Sorry. But a lot of what I’ve written this year is based on real-life experiences. Please excuse the self-absorption. 

Over the last couple weeks, I’ve been feeling kind of sorry for myself. For one, I’m a Jets fan. The reasons for self-pity are legion there. Just Endure The Suffering.

For another, in case you didn’t know, I have Myalgic Ecephalomyelitis (ME). It’s a hard thing when your life is about driving yourself and challenges, because you need to pace yourself and not work to capacity. My workout approach is to exceed capacity. That’s a bad thing for me now.

Waaah! Pity me.

But there’s a very important thing I’ve forgotten. ME is often a diagnosis of exclusion. You rule things out. As part of that process, I went to a gastroenterologist.

An early symptom of this whole thing was stomach pain. Not awful. It was just kind of there. So when I got my mandatory colonoscopy I also got an endoscopy. And they found out I have Barrett’s Esophagus–a disorder caused by acid reflux where your esophagus mutates into your small intestine.

That’s right, I’m a mutant. But I don’t sprout bad-ass blades out of my knuckles and autoheal like Wolverine. (Don’t wear yellow spandex, either, thank God.) My super power is the ability to potentially develop esophageal cancer. It’s one of the nastier cancers, often undiagnosed until symptoms appear–which is typically too late for anything to be done. The mortality rate for esophageal cancer is high.

Not my super power.

In other words, it’s likely that I don’t have and won’t get esophageal cancer because I got ME. Without those health problems, I wouldn’t have gone to the gastro doctor. If I hadn’t gone there, I wouldn’t have been diagnosed with Barrett’s and there’s a possibility I would have wound up with a cancer that tends to be fatal once it’s discovered.

Put simply, it’s possible ME saved my life.

To my embarrassment, I had forgotten that until it was time to get ready for my endoscopy. They’ll scrape out the mutant cells, removing my super powers, and allowing me to have ice cream for dinner next weekend. Yum.

So, if you think about it, as much as I’m frustrated by my limitations, I’m an incredibly lucky man. It’s a pretty dark cloud, as clouds go, but a pretty incredible silver lining I’d allowed myself to lose track of.

There’s almost always a silver lining. It may not be this extreme, but it’s there. In my case, I forgot. I’ll try to do better going forward.

Identifying a silver lining and holding firm to it is an area in which you can probably beat my ass.

As I process all this stuff, the importance of trying to hold onto every possible silver lining is becoming clear.

 


The Letter

I had homework this week–write a letter to the guy who didn’t know six months ago, that he’d do Triometrics one morning and wouldn’t work out again. It was intended to be a letter to help me come to terms with what’s happened since Monday, February 16, the last day I worked out. (Not that I kept track…)

Triometrics. It’s like plyometrics, except, you know, different.

There’s a very good chance that guy who managed stress through workouts and found his strength at the bottom of a sweat-soaked tired body is no more. And because of what’s been necessary the last six months, I’ve never really come to terms with that. So I had to write that guy a letter.

So yesterday, I started writing and what I thought was going to be a heavy, difficult, angst-ridden exercise was something much different.

I started by calling that guy a poor son of a bitch. For one thing, he likes the Jets. For another, I know what he has to go through. But that’s when the surprised happened. The letter became about encouragement and realization. It became about strength and resilience and untapped potential and stubbornness and loyalty and love.

It can be best paraphrased by something a very close friend posted on Facebook the other day from Winnie the Pooh, of all things. It’s a quote from Christopher Robin to Pooh bear.

Promise me you’ll always remember (emphasis mine), you’re braver than you believe, stronger than you seem and smarter than you think.

How could I be otherwise? I have the guts to root for the Jets every single year. (Okay, maybe that’s not so smart.)

But that letter was a great exercise.

I can’t handicap where I am right now, but there’s a very good chance I will never work out again, at least not like I used to. I may never get another chance to curse the heat of the Florida summer while I try to squeeze out two or three extra miles. In fact, I may never run another step. Ever.

I’m still not comfortable with those potential facts. I have a lot of work to do to accommodate that reality.

But as much as this year has sucked–and its suckage has been legion–it hasn’t beaten me. I’m brave, and strong, and in every way except picking sports teams, pretty smart.

And there’s one other things–there’s something bigger for me. I’m not alone. For me, it’s God. I’ve always had a hard time trusting in that kind of massive, undeserved love. (Honestly, if it’s deserved, it’s not love; it’s payment for services rendered, which is something else.) This year when that kind of love has propelled me and supported me, I think I’m ready for that.

Maybe that’s not your thing. But whatever it is, without it, all the Christopher Robin stuff is damn near impossible.


It’s about me, but not really

I was a flaming a-hole today. Not that kind that comes from spending the day grazing at Moe’s. More like the kind that comes from being exhausted and stressed and beaten down by the daily grind that promises to exist as far into the future as I can see.

It’s hard, this existence. It could be a hell of a lot harder, but that’s hollow blessing some days.

Like today.

The way I hurt myself was by hurting other people. By being surly and unapproachable and mean and bitchy and less than the sparkling conversationalist I usually am.

There’s a very good possibility that the next day I don’t feel the way I typically feel will be the first day I stop breathing. When you come to that realization, it’s hard to see a circle of suffering that extends beyond yourself.

But it does. It affects my wife, my kids, the people I work with. It affects the guy at Publix who needs time-lapse photography to capture his movements as he checks out my four items with all the efficiency of a statue. It affects the jackass who had no clue where he was going this morning on Dale Mabry Highway this morning and decided we should all get to avoid being hit by him while he meandered his way to figuring it out.

Sigh.

 

On the one hand, it’s okay. I have Myalgic Encephalomyelitis (ME). I get to do that sometimes.

On the other hand, I’m not the only one. My wife has to watch a man she counted on, loved, and hopefully admired become a shell of himself. She has to watch the breadwinner meander through some permanent fairly scary health problems at a time she’s too old to start a new career.

My kids get to watch their father suddenly seem very old and wonder what that means to them.

My partner at work gets to watch as I miss things I normally don’t miss, and as I knock off early because I have to save my energy–all while she works late. Again.

It’s a hard thing to keep in mind.

To me, this is largely about me. But it isn’t solely about me.

It’s about them, too.

I’m lucky because they’re very patient with me. But I need to take care that I don’t take the patience for granted.


The view from here…

The last few months have been really hard.

Really. Hard.

Work would’ve been enough. Or the health thing (by the way, for the record, I have Myalgic Encephalomyelitis. Hooray, right?) Either of those things on their own would’ve been enough to make things difficult. When you put them both together, it leads to a long string of days in which I switch on the laptop and wonder how I’m going to do it today. And how I’m going to face the endless parade of days until something in one of those two areas changes for the better.

In the middle of that ongoing dusk-like existence, it’s easy to lose track of the things that provide the color.

Getting this condition, at this time, is bittersweet. On the one hand, it sucks. I’ve covered this already. My former way of life is gone, most likely forever. There’s a very good chance I’ll never run again, or do P90X, or anything of the like. There’s a decent chance I’ll get worse, potentially a lot worse.

My condition is complex and mysterious. There’s no single diagnostic that can show this is exactly what I have. There’s no cure. Not even a proven treatment plan. The symptoms even vary from person to person and day to day.

I’m doing well now, relatively speaking, and while there’s no guarantee my world will shrink to my bed, the odds of that happening are a hell of a lot higher now than they were six months ago.

But I did say bittersweet.

I’m not glad I have this. I’m not glad for my struggles. But they’ve allowed me to see some things I wouldn’t have otherwise noticed.

Like how truly supportive and patient my wife is. Like how she’s more concerned with my health than how it’s going to affect my ability to win the bread. Like how willing she is to put up with my mood swings and distance as I try to make sense of things. Like how much extra stuff she’s done because I can’t. Like how willing she is to adjust our budget to accommodate what’s good for me.

Like how amazingly pro-active my church is. I won’t lie. My pastor is big on saying that the difference between someone who isn’t sure of eternity and someone who is, is as simple as surrendering. Sometimes you can’t really appreciate God until you have to truly rely on him. I’m not saying I’m there yet, but his love is teaching me how, how to kneel (yeah, yeah, yeah, yeah).

Like how tough I really am. As it turns out, I’m a tough, stubborn son of a bitch. Who knew? Either that, or I’m incredibly stupid. (I am, after all, a Mets fan.)

Like the people at work who are being incredibly supportive. In particular, people have come forward in ways that will humble me for as long as my brain functions.

This is changing me, in a lot of ways that suck. But it’s also changing me in ways that change my view of things, people, and myself. They make me stronger and sturdier and better able to appreciate things I used to take for granted.

I guess I’m lucky to have this; there are, after all, two kinds of luck. But that means I get both of them. And I get to see things differently as a result.

It doesn’t make up for not being able to run ten miles, but it beats a stick in the eye.


Redefining winning, among other things

Robert B. Parker

In one of Robert B. Parker’s earlier novels, Spenser says that the stereotype about men and women is backwards. Women are the more detached and rational sex, while men are more emotional. Guys are too often wrapped up in honor and what a man should be. Their ego and pride–both useful things in a lot of situations–get in the way of a pragmatic solution.

As a guy in Western culture, in particular since I started working out, I’ve grown accustomed to the fact that there’s nothing out there I can’t muscle through. There’s no challenge that can’t be met with preparation and the properly applied amount of really hard work. In short, I believe in bootstraps because I’ve used them. I’ve rebuilt myself using the Bible, Tony Horton and Shaun T., and a never-ending procession of early-morning work outs and Florida torture runs.

If you aren’t getting results, work a little harder.

I can’t work harder. I can’t muscle the problem to death. No amount of jump-knee tucks or curls or pushup jacks can resolve this problem. You can’t win by working harder than the other guy. But putting in the extra hours, you only make your inevitable loss come more quickly and cost you more.

Trying to run through this wall will only result in you winding up bruised and  cursing the wall.

It’s not a condition that allows for honor and fury and muscle and being a big damn hero.

This is a condition that requires pragmatism and certainly requires that you put away the concepts of honor and ego, which will surely bury you alive. (It doesn’t help that the vast majority of people who get this are women. As a guy, that makes it harder.)

It’s a condition of diminishment and inability. It’s a disease where the only way to win is to radically the definition of winning.

That doesn’t mean that winning’s impossible. Laura Hillenbrand won. Stevie Nicks won. Cher won. Michael Crawford won. You just have to be pragmatic about it. Laura Hillenbrand won in spite of not leaving her house for two years.

Laura Hillenbrand

Winning means working harder, but not in the normal way. You have to work harder to figure out a way. And you have to give yourself permission to fail along the way–and if we’re dealing with stereotypes, guys tend to be horrible at that.