Tag: health

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Making the Jump

At age seven, I had no doubt about it. Han Solo was the coolest guy in the universe.

OK, Luke Skywalker was the one I wanted to be – I mean, Jedi powers and a lightsaber, right? But Han didn’t need them. He was the guy who could do anything. Fly through asteroid fields. Talk to Wookiees. Ride into savage blizzards just to save a friend. Heck, he even tried to gun down Darth Vader himself. Sure, it didn’t work, but the man knew an opportunity, right?

But even cool guys have their moments. And one of Han’s has stuck with me down the years.

If you’ve seen The Empire Strikes Back (so, most of you), you know exactly what I’m talking about. It was the film’s major running gag. Han and his friends are in a tight spot in the Millennium Falcon, the fastest hunk of junk in the galaxy. Han’s gained a little distance, and is ready to jump to light speed and leave trouble behind … and the hyperdrive fails.

Once. Twice. Even a third time, with a friend at the controls.

“It’s not my fault!”

I may have never had to fast-talk space gangsters, or outshoot stormtroopers, or snatch a princess from the Death Star. But I could surely empathize with that one.

You try. You try. And you try again. And it seems like absolutely nothing happens.

My wife Heather is the master of this. Over the years, she’s endured more chronic illnesses than Jabba the Hutt has bounty hunters. Crohn’s disease. Ankylosing spondylitis. Multiple sclerosis. A host of situations and medications that send my spell-checker screaming for help, or at least extra vowels.

Once in a while, we beat one, like the endometriosis that finally submitted to surgery. And sometimes, we get long quiet spells where life is almost normal. But then there are the other nights.

The ones where the current medicines don’t work. And the alternatives are all on the “allergy list.”

The ones where the “MS fog” is too thick to read a book. Or where the pain and fatigue make even ordinary task into Olympian ones.

The ones where you’re doing everything the doctors have said, everything your friends have suggested, everything you can think of yourself – and nothing seems to change.

Oh, yes. We’ve been there.

Most of us have.

Not necessarily with chronic illness. But we’ve all had the situation that refused to yield. Professional frustration. Personal grief. A family situation that seems implacable. Whatever it is, it leaves you running in place, wondering if progress is possible. Wondering if progress even exists. As Shel Silverstein put it, in his dark take on The Little Engine That Could, “If the track is tough and the hill is rough, THINKING you can just ain’t enough!”

Funny enough, George Lucas himself had his own story there. He described his first six years in the film business as “hopeless.” His father had wanted him to go into office supplies instead, and for a little while, George may have been wondering if he was right.

“There are a lot of times where you sit and say ‘Why am I doing this? I’ll never make it,’” he said in an interview. “I’d borrowed money from my parents. I’d borrowed money from friends. It didn’t look like I was going to be able to pay anyone back.”

Then came American Graffiti. And a few years later, Star Wars – a film that almost everyone believed would bomb, including Lucas himself, until it spectacularly didn’t.

Stories change. Without warning.

Not without effort. Not without help – even Han needed a hand fixing the hyperdrive. And not with any guarantee.

But surprising things can happen if you give them the chance.

Heather and I have seen it. Not the magic “happy ever after” that leaves you with a gold medal, a space princess, and a three-picture deal. But victories that have let us grab back pieces of normality, and even become caregivers ourselves.

We dared to hope.

And hope, it turns out, can be a pretty impressive Force.

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A Healthy Respect

When you think about it, we don’t ask for that much from our presidential candidates. Just the agelessness of Superman or Wonder Woman. The steel-clad sweat glands of the Terminator. And maybe the all-around athleticism of Steve Austin, the Six Million Dollar Man.

Simple, really.

As you may have gathered from the most recent news cycles, though, we don’t exactly have the Clark Kent candidacy yet. On one side of the aisle, Hillary Clinton’s attempt to continue her campaign through a case of pneumonia drew alarmed coverage from journalists across the country. But there was plenty of criticism left for her opponent Donald Trump as he openly hesitated about releasing his own recent medical information, before eventually presenting the results of his latest physical on-air to Dr. Oz.

Now, on one level, I get it. The presidency is a highly stressful, demanding job. When you look at the before-and-after pictures, our typical Leader of the Free World looks like they’ve aged about 20 years overnight. And when both candidates are among the oldest to ever run for the position, it can be important to know whether they’re one good White House dinner away from saying “Your turn, Mr. Vice President.”

But I’m also not too surprised that a candidate would hold that information back. Or a president, for that matter. In a way, we all but demand it.

Simply put, we don’t do sickness very well.

The Christian writer Max Lucado once noted that if you ever want to stop a conversation cold, ask someone what they think about their impending death. We don’t want reminders. Not as a species. Not as a country. Entire industries are built on the premise that a person can always be young, beautiful, and healthy, a movie star on Main Street.

Illness? Worthy of sympathy, of course. But please, have the decency to get better soon so we can go back to our fantasy. As I’ve mentioned before, even the best-intentioned friend can begin to suffer “compassion fatigue” when continually exposed to the reality of a long-term physical condition.

So we build up an ideal. And to meet that ideal, our presidents lie.

It’s not a new thing, born of reality TV and the celebrity presidency. Franklin Roosevelt concealed the extent of his polio, attempting to “walk” with braces in public and never letting his wheelchair be photographed. Jack Kennedy publicly played rough-and-tumble football games with his brothers to hide his difficulties with back pain and Addison’s disease. Woodrow Wilson had a stroke that basically incapacitated him for the last year and a half of his presidency; the public was told he was suffering “nervous exhaustion.”

Never let ‘em see you suffer. Keep up the face at all costs.

Sometimes, of course, the face slips – and oh, boy, do we react. The elder George Bush famously tried to attend a state dinner despite an illness, and was roundly ridiculed when he threw up on the lap of the Japanese prime minister as a result. Even lesser reminders of physical imperfection become the stuff of late-night comedy – when Gerald Ford, a former college athlete, began suffering an extended attack of the clumsies, it pretty much launched the career of Chevy Chase.

And each moment with derision, we remind our presidential aspirants to build that wall a little higher.

I’m not saying presidential candidates should be dishonest. At this level, the information often needs to be out there. But some of the burden is on us, too. We need to be able to react without hysteria, without mockery, and with as much common sense and calm judgment as we can bring to the table. (A little sympathy might not hurt, either.)

Trying to pretend an illness isn’t there can make things worse. We all know that. But if we insist on the mask, we’ll get it.

And I guarantee, it won’t be hiding a superhero.

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Running the Course

LeeAdianez Rodriguez had been running late. And then she was just running. And running. And running.

The 12-year-old New York girl had meant to line up for a family 5k race in Rochester, a run of about three miles. Somewhere along mile four, she realized something had gone wrong. Quickly checking with another runner, Lee learned the truth – in her rush, she had accidentally joined the competitors for the half-marathon instead, a 13.1 mile competition.

By then, according to the Rochester Democrat & Chronicle, her mom was trying to find her. The police were trying to find her. And, unaware of that, Lee had decided to keep on running

“I was like, I’m going to finish this, I’m going to keep going,” she told NBC New York.

Finish she did.

“It was such a scary moment for her, but rewarding in the end,” her mom, Brendalee Espada, told the Democrat & Chronicle. “I don’t even know how she did it.”

Sound familiar?

Mind you, I don’t expect that any of us has ever signed up for the Turkey Trot and then accidentally run to Twenty Ninth Street in Boulder for a little shopping. But we all know about getting on a course that’s longer and more exhausting than we’d planned. That’s how life works.

When Heather and I first got married, for example, we thought we’d mapped out the course pretty well. On our first dates, where most people learn about their favorite books and movies, we had filled each other in on our medical history. (OK, so we’re a little weird.) She learned about my epilepsy. I learned about her Crohn’s disease and her endometriosis.

All planned and prepared, right?

Well, except for the part where she got diagnosed with ankylosing spondylitis a few years later. And multiple sclerosis a few years after that. And of course, the part in between all that where we became guardians to her disabled aunt, Missy, a constant source of wonder and amazement to both of us.

Other than that, I suppose we were ready. Which is a little like saying “Other than that, Mrs. Lincoln, how was the play?”

We had no clue what we’d signed up for. But we kept running anyway. And so far, we’re still in the race.

It doesn’t have to be that dramatic, of course. But it’s going to happen. Jobs, families, and even hobbies hold unexpected on-ramps and detours that can carry us way out into the countryside before we know what’s happened. (One of my personal favorites remains getting handpicked for the lead in an Oscar Wilde play, with its beautiful, witty language – and then being told I had exactly three weeks to learn the script.) When it comes to signage, life makes the Colorado highway system look clear and sensible.

And most of the time, all we can do is run the race out.

Well, maybe not all we can do. If we’re paying attention at all, we also learn a few things about strength and patience and endurance. We probably get some lessons in flexibility and humor as well. And we definitely discover some experiences that we would never have chosen for ourselves.

Most of all, most of the time, we learn that we can do it. We can last. We can keep putting one foot in front of the other, even when we’d rather just curl up in a ball for a while. We don’t always want to. It’s not always fun and it’s rarely easy. But it’s there.

“I’m going to finish this. I’m going to keep going.”

Words to live by.

After all, what’s another mile or ten between friends?

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Making Magic

Heather’s youngest sister hurried up to me as the rehearsal dinner wound to an end.

“Mom’s outside with Heather,” she said. “She’s sick.”

My turn to hustle. Sure enough, my wife Heather was doubled over on a bench outside the restaurant. It had been a warm night and heat is no friend to an MS patient; as she’d stepped outside the crowded dining room to get some air, she’d suddenly had to sit down before she fainted, threw up or both.

“I need the car,” she whispered as her stepmom watched over her. Of course. I hurried off and pulled around, slamming the air-conditioning from Spring Day to Christmas in the Arctic. Her family helped bundle her into the back seat, some asking if they needed to follow us home.

No need. After a few brief minutes in the frigid air, Heather was upright and coherent, talking easily and reassuring everyone. It was like magic.

Appropriate enough. After all, dealing with any chronic condition is something akin to stage magic.

We’ve dealt with a lot of things for a lot of years. Crohn’s disease. Ankylosing spondylitis. Now multiple sclerosis. Each time, we’ve had to meet it with the dedication and training of a David Copperfield, not to vanish the Statue of Liberty, but to make something close to a real life reappear.

It can be done. But like a Copperfield or a Houdini, it takes hours of advance preparation to make things seem natural, even effortless to an audience. The wedding of Heather’s sister Jaimee the next day was typical, where a full morning’s rest, a constantly-present water bottle and periodic micro-breaks outside the reception helped Heather survive a ceremony on the hottest day of the year.

Magic indeed. But you never really get to let the curtain go down.

Chronic illness ebbs and flows, but the need to manage it never really goes away, much like the need to exercise. It’s a constant. For someone who hates losing control of their life, it can even be something of an irony – now you have to take control of your life whether you want to or not, even those things that would normally be automatic for most people.

You measure how much you can do before the fatigue catches up. You inventory what you need for even a short excursion. You balance, compromise, postpone so that the essentials can keep going. Maybe you even learn for the first time what the essentials truly are.

Somehow, you keep things going. Sometimes surprisingly well. Well enough that friends or relatives can be astonished when a breakdown occurs, because they’ve never seen you that sick.

It’s a triumph. But it’s a tiring one. After all, the show must go on … and on, and on, and on.

I’m not saying any of this to fish for pity. If anything, what I feel is closer to wonder. I am married to a strong person in a compromised body, and even on the days when she’s feeling weakest, the power of what she’s already done shouts to me in a voice I can’t ignore.

This is more than magical. This is miraculous. Maybe not the kind of miracle where a lame man is suddenly pole-vaulting down the street, but miraculous nonetheless.

There will be better days. There always are, eventually. But until that intermission hits, the Magically Medical Rochat Family will continue the conjuration. We can’t let the audience down, after all.

And if it means some long highway trips in sub-frigid air, then so be it.

After all, I already knew she was the coolest lady around.

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Cracking the Case

There’s something very soothing about being in an Agatha Christie play.

I admit that sounds a bit odd. After all, Dame Agatha delighted in mayhem. Over dozens of books, she never found a cause of death she didn’t like, from the prosaic knife or pistol to the ever-threatening digitalis in the teacup. And the danger could come from anywhere, including a previous victim, the detective, or even the narrator.

But at its heart, Agatha Christie’s world is a sensible place. Order is disturbed and then put right. No problem is impossible to solve. Consider the information at hand, discard preconceptions and the answer – never an answer, always the answer – can always be reached.

It’s a nice place to visit. And starting May 1 with the Longmont Theatre Company’s “Murder on the Nile,” I get to do just that.

I just wish I could live there.

Oh, we’ve got our own set of mysteries at Chez Rochat. Most of them, at any given time, tend to revolve around the health of my wife Heather. Heather is to chronic illness what Mozart was to composition: a natural talent, with new and surprising directions emerging at every turn.

She’s dealt with Crohn’s disease. With multiple rounds of endometriosis. With a condition I’ve mentioned here before called ankylosing spondylitis, a disorder as painful as its name is musical.

And now … now we’ve got a newcomer in the deck.

We’ve been trying to track the source of what Heather calls her “mystery pain” for a while. The clues haven’t been as prosaic as a pistol, a scarf and a three-day-old bottle of nail polish. Instead it’s keeping track of pain here, numbness there, fatigue lasting this long, and so on. What’s happening in the limbs? The face? The spine? What’s new and what’s overlapping with the old conditions?

It’s enough to make you wish that Hercule Poirot had a grandson in the medical field.

With patience, time and a recent ER visit, we’ve teased out one piece of the jigsaw: trigeminal neuralgia, a nerve pain that can be unexpectedly triggered by a simple touch to the face. Or not. Like every other villain in this detective series, it’s come-and-go, though over time, “come” can be more frequent.

Even if we have that to stand on, though, there’s still so much more puzzle to solve. The initial clue gives us some possibilities for the bigger picture – some of them quite disturbing – but until a doctor locks down an answer, we can’t be sure.

An answer. Not necessarily the answer.

And no guarantee that order can be restored.

I won’t lie. It’s hard. Sometimes we get long windows where things go well. Sometimes she can barely move from the bed without help. It’s a guessing game, one that even Miss Marple’s shrewd sense of the human condition couldn’t outfox.

It’s tiring. Painful. Frightening, even. And yet … and yet, that’s not the most important story.

Because through it all, and sometimes to her own disbelief, Heather has still held on to what’s important.

She still cares.

Sometimes that’s frustrating for her, especially when there are things she wants to do and can’t at the moment. But so many times, Heather’s found a way. She’s been a guardian and “mom” to her disabled aunt Missy, a comfort to the world’s craziest dogs, a tease to her sisters, a “weird aunty” to the family infants and toddlers. She’s been a loving – and loved – partner to me.

And in the midst of so much pain and uncertainty, that’s pretty near miraculous.

We don’t have all the information, or a flawless set of gray cells to solve it with. Some days, we barely seem to have sanity or patience or sleep. But we’ve got each other. And through the stress, that’s enough.

Some mysteries defy detectives. And the biggest ones are never quite finished.

But so long as the clues can carry us to tomorrow, that will do for now.