Tag: chronic pain

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Beyond Words

Heather hurts. A lot.

I wish I could say those words felt unfamiliar.

She’s had a lot of practice. Since her teen years, my wife has put together a list of conditions that sounds more like a pre-med syllabus. Crohn’s disease. Multiple sclerosis. Ankylosing spondylitis. By now, if we ever hit a Jeopardy! category called “Autoimmunity,” we’re sure to clean up on the Daily Double.

Yes, we joke about it sometimes. We’ve had to, the way Londoners in World War II sometimes joked about the Blitz. (“Last night’s raid hit Monkey Hill at the zoo. The morale of the monkeys remains unaffected.”) We’ve quipped about how Heather’s conditions mostly have the courtesy to take turns, flaring one at a time, or how catchy some of the medical terms would sound when set to music. In a situation you can’t control, sometimes absurdity helps get you through.

And sometimes nothing does.

The last few days have been part of that “nothing.”

Heather’s control is amazing. Most of the time, she carries on so well you wouldn’t realize anything’s wrong, at least, not until she went upstairs for an extended nap. So when the breakthroughs happen … well that’s when you know it’s truly awful.

That’s when 3 a.m. comes and sleep doesn’t.

Words become inadequate. Gestures of comfort feel small. All you can do is try to make it through the night and hope the next day brings more strength to face a painful world with. Sometimes it does. Sometimes you’re just fighting the battle again.

Even without a diagnosis, I think a lot of Longmont is fighting a similar battle right now.

We’ve all grown used to bad news in the world. Maybe too much so. When life keeps screaming in your ear on a regular basis, your mind has to push some of it away out of sheer survival, just to make it through the day.

And then it hits close to home. And you can’t not hear.

You can’t not feel the pain.

You know the story. By now, I think we all do. I don’t need to recount the mailbox shooting point for painful point, where one life was taken and at least two more forever changed. Some of us knew the people at the heart of it. Some had never heard their names before Wednesday.

But all of us are hurting now.

We don’t want things like this to be real. We want to understand why, as if that would forever keep the pain from returning.

But we don’t understand. We can’t.

And a sleepless 3 a.m. comes again.

I don’t have any miraculous words of wisdom here. I don’t think anyone does. Nothing that wouldn’t feel like trying to wrap a wound in tissue paper. The tools aren’t strong enough for the task.

All I can offer us is each other.

When the incomprehensible comes, whatever form it takes, we need someone there. The friend who can listen as the pain pours out in words. The partner whose gentle touch is a reminder that we don’t stand alone. The souls beyond our own who can walk with us and face the unimaginable together.

It may not be enough. But it’s more than we have alone.

And together, maybe we can reach the morning.

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Owning the Worst

I’m going to ask my fellow Denver Bronco fans to go to a very dark place for a moment.

Imagine that the recent Super Bowl bus accident was worse. Imagine that Von Miller, our monster with a license to sack, was hurt badly. So badly, in fact, that he was unable to suit up and take the field for Super Bowl 50.

Undaunted, the brothers of the Orange Crush know exactly what they must do. And when game time comes, they stream onto the field – 10 players, ready to go, with a gap where Miller would normally stand.

“We can’t let ourselves be dragged down by this,” they insist. “We have to think positively. If we play as though Von were still here, the rest won’t matter.”

And then of course, they get beaten like a drum. Why? Because you’ve still got 10 men going up against 11. And all the positive thinking in the world won’t change the realities of math.

It sounds obvious. Even a little bit silly.

But when it comes to the world of chronic illness, you’d be amazed how many missing Millers there are.

My wife Heather runs into this every so often online. Her own list of chronic conditions would have medical students fighting for the chance to invite her to show-and-tell. Crohn’s disease. Multiple sclerosis. Ankylosing spondylitis. A couple of others that lengthen the medical file and send spell check screaming for help.

Because of her situation, she visits a lot of patient-oriented online forums and groups. And when someone else wants to talk about their condition or the pain and discomfort it causes, she’ll usually respond, just to help the person see they’re not alone.

Unless, of course, someone else closes off the discussion first by insisting that “we don’t want to dwell on our illness here.” Or that “Focusing on it only gives it power over you.” Or otherwise implies (or states!) that by refusing to acknowledge the illness, you can continue to live your life in spite of it – sort of a medical prosperity gospel.

Few things will infuriate Heather more quickly.

“There’s not a part of my life that hasn’t been touched by this,” she told me recently, after one more clash with the power of positive thinking. “You have this – and it’s OK. You have to work with what you have.”

That’s true of so much more than the medical.

It’s a human thing to try to wish problems away, or to hope that ignoring an issue will eventually resolve it. It’s rarely that easy. You can compensate for it. Work around it. Even maybe come to peace with it. But outright denial not only doesn’t help, it can often make the problem worse. Ever driven a car too long on a flat tire? Or tried to exercise through a minor injury, only to discover what a major one’s like?

Contrary to the popular imagery, chronic illness isn’t a war. Not in the usual sense, anyway, where you can rally the cavalry and sweep the enemy off the field. It’s more like being a civilian during the Blitz, the German bombing of London in World War II. You don’t ignore the bombs. You take shelter when you have to. But you keep on living your life as best you can, making adjustments for what’s been damaged or lost.

It doesn’t mean you drown in your pain or become morbidly obsessed with your condition. But you forge a sort of partnership, taking what you can, planning where you must. Not a life without hope – quite the opposite! – but a life with the awareness and effort that real hope requires.

It’s OK to not be better. It’s not your fault. It doesn’t mean you’ve failed. You can own it, and in doing so, deal with it.

Take your best 11 and put ‘em out there. It might not be the team you want. But it’s the one you’ve got.

Play hard.

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Full View

My wife Heather may be the happiest person to ever receive an MS diagnosis.

“Yes!” she shouted after the doctor’s call came in Wednesday afternoon. “I told them I was sick! I told them I was sick!”

Regular readers know that we’ve been searching to an answer for Heather’s “mystery illness” for some time. The symptoms have been a regular cavalcade, including fatigue, pain, loss of coordination, foggy eyesight, foggy memory, a foggy day in London town …

Ahem. Sorry about that.

Anyway, after being introduced to a spinal tap that’s not nearly as entertaining as the Christopher Guest version, Heather can now definitively tie her troubles down to two words: multiple sclerosis. Yes, that ugly disease of the brain and spinal cord, the one that can’t really be cured, only contained.

Of course, anyone who saw our huge, relieved grins after the diagnosis would probably conclude that there wasn’t much brain left to affect, anyway. But in a weird way, it’s exciting.

At long last, something makes sense.

Any chronic pain sufferer should recognize the feeling. You can spend weeks, months, even years in shadow boxing, going through the medical motions without hitting anything solid. You get told that you’re fine, even when you know better. You get medicines that don’t help, tests that don’t show anything, advice that fails to illuminate. Sometimes people will suggest you’re a hypochondriac. After a while, you may start to wonder if they’re right.

And then, BAM – you hit something solid. Or it hits you. Either way, there’s a reality that can no longer be denied. You’re not crazy, you are in a fight, and even if it’s one against Mike Tyson himself, you can finally see the other fighter in the ring.

That’s huge.

You don’t even need to be a patient to understand. We see the same thing every day in the political world, or the business world, or in military strategy, or in the thousand small-scale issues we deal with every day. To solve a problem, the people involved have to agree 1) That a problem exists and 2) What exactly the problem is. What you cannot define, you cannot defeat.

Put down a name and you can have objectives. Goals. Tactics. Hope.

Heather has a name. A nasty name. But a real one.

That means we have a road forward.

Even better, the road may not have as many potholes as we feared. The tests caught her MS early. That’s one reason it slipped through the early scans undetected, and it means the disease may be at a more manageable stage.

Still better: this is something we know from the outside. We have good friends who have been through this, people who still live full lives despite the need to recharge and recover. One even kept up a position in the Navy Reserve until fairly recently.

I know, there are stories of worse as well as better. But again – what you can name, you can know. And some of that knowledge is encouraging.

We’re not alone.

Not that we ever were. But now our friends and family have something to rally around as well. Unease and uncertainty can drain a caregiver as well as a patient; a lifting of the fog can be almost rejuvenating.

Is it any wonder we smile? And even laugh?

No wonder at all. Not when there’s a purpose that can outweigh the fear.

It will not be unremitting joy. We know that. We’re looking at a hard struggle, probably a painful one.

But we’re looking at it. And that makes all the difference.

I hope someone out there can take encouragement from this. The fog can someday lift. The light can shine. The battle lines can be drawn and defended to the inch.

Victory is never certain. But knowing, really knowing, is a victory all its own.

It’s time to celebrate.

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Red Queen’s Race

It’s hard to think when she’s hurting.

I look at those seven words. Then look at them again. They don’t seem to go far enough. And they seem to fit far too well.

She’s been hurting a lot lately.

This is not new ground for me and Heather. Far from it. Some people trade favorite books and movies on a first date; we traded medical conditions. Hey, you talk about what fascinates you, right?

So I’ve known all along about her Crohn’s disease, about her migraines, about her crazy immune system. Surgery took care of the endometriosis; the lesser-known, harder-to-spell ankylosing spondylitis came into the picture about the same time. It’s a list I can rattle off better than next week’s groceries at King Soopers.

But lists don’t capture a wife who hurts so badly, she has to lean on your arm – hard – just to get from the bed to the bathroom.

They don’t capture the frustration of knowing everything she needs and wants to do, and having to wait for her body to give permission.

They don’t capture a lot of things.

It’s not always like this. Heather can go a long time between major flare-ups sometimes. Over the last five years or so, she’s even managed to keep them penned behind walls of medicine, a new drug that could push back the pain, give her some spaces to live a life. Not perfectly, but better than anything before it.

But like sunspots, chronic pain seems to have a cycle. And lately, we’ve been trending toward a maximum.

The walls are getting cracks.

I don’t know how she does it. To be fair, neither does she. There’s a lot of days when she doesn’t want to do it, when she’s flat-out had enough.

But still she’s in there. Part stubborn strength, part love, part not knowing what else to do.

I know we’re not the only ones in this spot. We’ve taken love and comfort from so many, the other folks whose friends never know quite what to say, who keep asking if you’re doing better, not understanding that “doing better” is a temporary thing, not to be relied upon.

Every so often, I flash back to a joke my cousin and I used to tell. We knew that deja vu was the feeling you’d been somewhere before. The opposite, we said, must be vuja de, the feeling you never want to be somewhere again.

Flare-ups are made of vuja de.

I think the most frustrating thing for us – for anyone caught in a similar cycle of turmoil – is that we seem to keep covering the same ground over and over again, like a football team that can’t quite get the score but won’t quite give up the touchdown. Like Alice and the Red Queen from Looking-Glass Land, running as fast as they can, just to stay in the same place.

But oddly enough, the frustration is sometimes the strength. However far away the line may be, we’re still running. We’re still in the game.

Despite everything, we keep making it.

Not long ago, I spotted a Facebook message from one friend to another that I had to copy for Heather. It’s a virtual poster, reading “On particularly rough days, when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100 percent, and that’s pretty good.”

Yes.

We hang on. Sometimes by the notch in a fingernail. Sometimes by the skin of our teeth. But we’re not off the cliff yet.

And yeah, to mix the metaphor, that is one heck of a batting average.

Tonight may be hard. Tomorrow night, too. But we’ve made it through nights before.

And with love and stubbornness and exhaustion, together, we will see the dawn again.

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Blessed Are The Weary

A gale-force wind rattled outside as I watched Heather lying on the bed.

Exhausted. Spent. Tired down to her toes.

On her, it looked absolutely beautiful.

Mind you, I’m not the sort of husband who takes an unholy glee in seeing his wife drained to the last battery. But I knew what her last three days had been like. An all-day trip to Colorado Springs, an all-night visit by her two grade-school sisters, a dinner trip to Northglenn with them and her father – it had been just about non-stop for 72 hours.

For her to be tired, and only tired, after all that was nothing short of a miracle.

As regular readers may know, Heather has just a few health problems. Which is by way of saying the Titanic had a minor leak. And the two biggest icebergs in a crowded sea have been her Crohn’s disease – a charming condition of the guts that an Occupier wouldn’t wish on a Wall Street CEO – and ankylosing spondylitis, a highly painful condition that hits the back, the hip, the shoulder and the neck in an attempt to fuse any or all of them.

The two have waxed and waned over the years, turning life into a minefield. On one memorable occasion, I came home to find her crawling toward the bathroom – walking was simply too agonizing without help. On another, I had to improvise a bed for her in the back of our car so we could make a cross-state trip home that neither of us wanted to cancel.

“I knew you really loved me when you held back my hair while I was throwing up,” she told me once with a smile.

But the hardest parts were the windows of clear weather among the storms. At heart, Heather is a doer. And when her body would calm down for the slightest moment, she would get busy, fitting as much activity into the time as possible – and invariably put herself in bed for the next two or three days, saying “Why did I do that?”

That’s life with chronic pain. You ride the waves, even as you watch fatigued, well-wishing friends struggle with the fact that this isn’t the sort of thing you get better from.

But somewhere along the line, something changed.

It started with a new medicine, the kind with a price tag that suggests diamonds, gold dust and velociraptor DNA were used in its construction. Slowly but surely it pried the window open a little further, enough to hope … and enough to hope to help.

Hope can be a powerful catalyst. And the more Heather could do, the more she could hope to do – never completely consequence-free, but always enough to keep the next step of the ladder in reach. When it came time to become a guardian for her developmentally-disabled 38-year-old aunt Missy, she never hesitated. And that ability to help someone else as she had been helped just pushed the “hope cycle” even higher.

She still has pain days. Sometimes very bad ones. But now, mixed with them, are the days of mere exhaustion, the after-effects of a time well spent. To be able to work hard enough that you’re tired from it.

It’s an odd blessing to name. But a true one.

I don’t know how long this turn of the roller coaster will last. All we can do is ride. I suspect that’s all any of us can do, holding out with as much patience and faith and endurance as we can until the next chance to climb higher comes.

For now, it’s just nice to know that “sick and tired” doesn’t have to be redundant. That to be tired can mean to be well, or at least well enough to truly live.

Sleep on it a bit.

I know Heather has.