Tag: multiple sclerosis

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Change Of Course

At long last, Heather’s sleeping.

That sounds simple. It’s been anything but.

For a few weeks now, Heather’s bedtime routine has looked like a kung fu movie. Every few seconds, she kicks with a force that could shatter pine. Every few moments, her arms lash out with a speed that Bruce Lee would envy. Over and over, on and on for hours, long enough to clear even the largest army of unseen ninja.

All we’re missing is the bad voice dubbing.

As you’ve guessed, there’s no Hollywood contract involved. Heather’s multiple sclerosis sometimes unwraps surprise gifts for us, and this has been one of the most unwelcome to unwrap. Call it myoclonus. Call it restless leg syndrome amped up to warp factor 5. Call it whatever you want, but please call it from long distance – you don’t want it visiting the house.

Not unless you like getting about five hours of sleep a week, that is.

Nights can be endless when you’re trying to find something that helps for even a few minutes – distraction, massage, anything – and hope becomes hard to find. You start to wonder what the doctor can do, what tools still might be in the box, especially for the woman who’s allergic to almost everything.

And then. One day after the worst night of all. One change in medicine, so small we weren’t sure it could possibly work.

Quiet.

Peace.

We’d both forgotten what that felt like.

Heather’s not completely motionless at night. But the big battle is over. What’s left is on mute – uncomfortable, sometimes even still painful, but not hopeless. She can sleep and rest and rebuild.

Just one change can make all the difference in the world.

That’s true for a family. For a state. For a nation.

Maybe it’s the small suggestion at the end of a hard day that makes everything brighter for a minute. (“Hey, Missy, how about we grab some ice cream?”)

Maybe it’s the promise of snow after weeks of fire, bringing the cold and the wet to where it’s most needed.

Maybe it’s the election year reminder, after too many commercials and too much junk mail, that we have the power to change things. To decide who we should keep and who should go, to vote against what weakens us and for what makes us stronger.

Whatever it is, it’s a reminder.

What was, doesn’t have to be.

I don’t want to just stop at Lincoln’s favorite lesson, “This too shall pass.” For me, that’s a little too …well, passive. In my mind, it’s clearer to say “This too shall change.”

Some changes we simply have to endure and make the best of. But some we can touch. Some even start with us. They may not be big changes, but small ones can propagate, whether it’s the crack that brings down a foundation or the seed that someday shades the entire yard.

That’s a cause for hope. That even our worst situations are unstable at their roots. That with work and effort and determination, something new can emerge. Probably not perfect. Almost certainly with problems of its own. But nonetheless, something we can build from.

The cast of Les Miserables once sung in hope that “Even the darkest night will end and the sun will rise.” They weren’t wrong. The light’s still there. Waiting.

That sounds simple. We know it’s anything but.

But difficult isn’t impossible.

And when the big battle is over – any of the big battles –  maybe we can even take a moment to rest.

Anyone up for a kung fu movie?

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The Waiting Game

Heather finally made it.

Those of you who have been following the adventures of my wife know that she’s repeatedly almost received an infusion for her multiple sclerosis, only to be rescheduled at the last minute due to a temperature. (I’ve always thought she was too hot for the room, but this is something else.) But a few days ago, we finally broke the cycle.

Yay!

Her prize? To sit for more than seven hours with an IV in her arm, trying to keep it from popping out or giving her an allergic reaction.

Uh … yay?

By the time she got home, her back had joined the Rebellion. Her arms were sore. Her body was fatigued as only those who have spent a full day in the locked and upright position can be.

Did it work? It may be a couple of months before we know. And then, win or lose, we get to do this again six months from now. Once again, the latest round of the Waiting Game (trademark pending) is on us.

Thankfully, we’re good at waiting.

Well … not good in the sense of “I am impassive to the world; let me become one with the universe/the Force/the complete works of Bob Dylan until it is time for me to unexpectedly reach out and trap a moving fly in my chopsticks.” That would be kind of awesome, not least because we could count on getting a part in the next Karate Kid reboot.

No, when it comes to waiting, we’re like a lot of experienced pros: resigned at best and impatient at worst. We don’t really like it. We wish we didn’t have to. But we’ve done it before and we’ll do it again, because that’s the only way that progress gets made.

More often than not, you move forward fastest by learning to stand still.

I’m catching a few nods out there. Long-term change of any kind – pregnancy, surgical recovery, dedicated Rockies fan – tends to require patience most of all. It’s even true in the political realm. It’s a truism in history that most revolutions fail; the ones that make it have laid down years, sometimes decades, of groundwork and have a tenacity that goes beyond the moment of adrenaline.

But there’s a trap. Don’t mistake patience for passivity. Waiting is not just sitting back and letting the world happen to you; it’s anticipating for the moment and preparing for it.

In the musical Hamilton, Aaron Burr sings that “I am not standing still – I am lying in wait.” There is a difference. You endure, yes, but you don’t just endure.

Heather isn’t waiting for the MS to magically resolve itself, any more than political change or decent relief pitching just falls out of the sky. She’s a participant in her own healing, even if that participation consists of waiting for the right moment to take certain small, specific actions, and finding ways to hold together in the meantime.

It’s not easy, especially for someone who would rather step up and take control now. Especially when there’s so much going on that screams for immediate help. But in the long term, care and patience usually leads to an answer that lasts.

Patience. Not despair. Not giving up. Not zoning out.

The next move in the game will come.

Hopefully with a good book and an IV that knows how to hold still.

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Half the Fun

They’d taken Heather’s temperature. Too high. Again.

Time to wait. Again.

For half a moment, I could feel the old station wagon forming up around us.

Longtime readers of this column may remember that my wife Heather was diagnosed with multiple sclerosis about two years ago. At the time, we were more relieved than anxious, since it explained so much that had been going on – the periods of foggy memory, the occasional bouts of weakness, and so on. Better to have an enemy you know, right?

Since her MS is of the “relapse-remission” sort, we even managed to get some stretches where things were just about normal again. Well, as normal as you can get when a person also has Crohn’s disease and ankylosing spondylitis (quite a mouthful, huh), but you know what I mean. During that normal time, she and her doctor started planning ahead. A periodic infusion of a “biological” medicine might help her keep on top of things – basically, trading an occasional and very boring five to seven hours in a chair for the ability to keep the MS on a leash.

No problem. Boring medicine days are why God put the Lumberjack Olympics on TV, right?

But something always seemed to keep that medicine just ahead of us, like a will o’ the wisp in a swamp. Things like paperwork that didn’t make it through the mail, or blood tests that had to be rescheduled again and again because another chronic illness had flared up that day and left Heather unable to come out.

Finally, the preliminaries were over. Medicine Day had come.

Unfortunately, so had the Creeping Crud. You know this one. Maybe you’ve even had it, the one that keeps circling back around for another pass? It bumped up Heather’s temperature, just a bit.

Just enough to postpone the infusion. Twice.

It’s a good thing I already have a bald spot. Less hair to tear out in frustration.

That’s when my mind’s eye began to see the Volvo arrive.

When I was a kid, my parents liked to plan long vacations for all of us. This included, more than once, the Great Overland Trek from Colorado to California, with two adults and three children in the confines of one car for multiple hours.

Mom was an expert at distracting us. Dad planned out small jobs that each of us could do. But inevitably, at some point along the highway, the Official Kids’ Chorus of Summer Vacations would arise.

“Are we there yet?”

“Are we there yet?”

“Are we there yet?”

The answer was obvious, of course. Not yet. Not for a long time. (Maybe not for a very long time, if the chorus started while we were still in Wyoming.) But when the good stuff is still ahead and doesn’t seem to be getting any closer, what else can you do?

Some things don’t change very much in three and a half decades.

We still wind up on long journeys, where we’re not at the wheel. We still find ourselves watching the landscape crawl by. And again and again, it seems like each passing hour brings … another passing hour.

It can be maddening. Or at least wearying. Especially if the resolution refuses to come into sight.

All we can do is trust. That California is out there somewhere. That the road does reach a destination. It’s not easy. But it’s necessary. We just have hang on to each other, do what we can on the journey, and keep traveling.

In our case, at least I know we’ll get there. The infusion will, eventually, happen. The treatment will, eventually, begin. And then we can start on a whole new road.

I hope we packed enough snacks.

 

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Reading and Revolutions

Heather and I have a lot of reading ahead of us.

OK, that’s not unusual. After all, between us, we have enough books to be the northern annex of the Longmont Library. (“Yeah, that’s history and classic literature in the living room, sci-fi and fantasy in the basement … I’m sorry, crafting and gardening? Upstairs and hang a left.”) But these next few months are going to be different.

For the first time in a while, I’ll be reading out loud to my wife.

We used to do this quite a bit. And, granted, sometimes she still listens in when I’m doing our bedtime reading with our disabled ward Missy. But this time, we’re doing this for exercise as much as recreation. Maybe a few laps with Heather’s beloved Jane Austen, or the calisthenics of Charles Dickens putting us through our paces. Heck, Dave Barry may be warming us up.

At this point, we’re reaching for anything and everything that will cut through the fog.

Regular devotees of this column may remember that Heather was diagnosed with multiple sclerosis a little more than 14 months ago. As we stumble towards (please!) a new, more effective medicine, there have been a lot of small battles to fight. The moments of weakness. The occasional vertigo and loss of balance. But the most persistent and insidious has been what Heather and others with MS often call the “brain fog.”

MS lives in your brain. And it’s not especially careful with the furniture. It can make someone forgetful, make it hard to focus or concentrate. Heather noticed it creeping in when some of her puzzle games became more difficult and when anything longer than a news article became too much to handle. The woman who had read and loved “War and Peace” couldn’t pick up a novel.

It can be fought – by using patience, by establishing patterns and workarounds, and maybe most of all by keeping the brain active and stimulated. Hence the out-loud reading, which lets us work through at our pace, stop and explain or repeat if necessary, and use multiple senses at once (including my own sense of the theatrical) to hold and keep her attention.

It won’t be easy. We know it’ll take a lot of time and work. The progress may seem minuscule or even invisible more often than not.

But that’s how revolutions work. Whether you’re revolting against Great Britain or your own brain.

This July marks 240 years since we first held “these truths to be self-evident.” But the American Revolution didn’t spring fully formed from the brain of Thomas Jefferson or John Adams. Its success was from more than just an eight-year war or even a summer-long Constitutional Convention. Plenty of movements have declared revolutions, from 18th-century France to modern-day politicians. Most of them fail.

What made ours different – or at least one vital factor in it – is how well-prepared it was.

In a way, the Revolution merely confirmed what the American colonists had spent seven or eight generations learning: that they could govern themselves independently of any outside power. They had been practicing that art for nearly 160 years before Lexington and Concord, learning how to build a society and keep it together, in a land where the mother country was months distant and much indifferent.

They survived. They thrived. And by the time the King and Parliament decided it might be time to tighten the rein, the colonists discovered they didn’t need Britain any more – and hadn’t for some time.

“The Revolution was effected before the war commenced,” Adams once observed. “The Revolution was in the hearts and minds of the people.”

Now it’s time for revolution to come to a mind again.

We don’t have 160 years to spend. But Heather spent most of her life forging the necessary tools. We’re willing to work as patiently and persistently as we have to, to knock the rust off and make them fit for use again.

I’ll take any excuse to read a good book. And this may be the best of them all.

Nothing could be more self-evident than that.

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Walking in the Dark

The distance falls away softly, a yard at a time in the still of a Longmont night.

Step. Step. And step again.

Even just a few blocks from Main Street, sounds are muted and far between. The metallic chime of a sprinkler hitting a fence. The odd car. The ripple of the Oligarchy Ditch, making its own muffled and effortless journey.

It’s a short trip that would take five minutes in a car. On foot, it’s closer to 20, with light and activity only gaining a more normal level as the destination grows nearer.

Step. Step. Another step still.

There are worse ways to pick up your groceries.

I’ve always been fond of the late nights and the early mornings, when even a smaller city seems to be a world transformed. And I’ve always been fond of walking, a habit I probably inherited from my English granddad even if I didn’t inherit his love of doing it at the hottest part of the day. (“Mad dogs and Englishmen go out in the midday sun,” as they say.)

So when the opportunity came to merge the two, making regular forays into the dark for a few supplies and a little quiet, I seized the moment. And night upon night, it’s oddly regenerating – maybe even a bit familiar.

After all, Heather and I have been doing a lot of walking in the dark lately.

Things have progressed slowly since my wife was diagnosed with MS last spring. Days get measured not in hours, but in careful rations of energy – how much can be done today? How far will a window of relief open? How much rest is needed now to turn tomorrow’s plans from theory into action?

Sometimes the calculations go badly awry. We’ve already ridden out one flare, a week stolen by pain and dizziness where traveling to the bathroom requires the timing and partnership of a carefully measured waltz.

Step. Step. And step again.

It’s a longer journey than 20 minutes. Streetlights are few and far between. Once again, it seems to carry us through the world while keeping us somehow apart from it.

And yet. Somehow, slowly, progress does seem to come.

It comes in pieces, the resumption of the ordinary that we had once taken for granted. A few hours of peaceful sleep. A chore as simple as cleaning the bird cage. A realization that she’s feeling tired at the end of a Saturday – not the all-consuming fatigue of illness and pain, but a more ordinary exhaustion from having two young nieces come over to play.

Those are the moments of hope, when the pavement draws near to something at last.

I know how fortunate I am in my actual walks into the night, to be in a place and situation where I can travel peacefully. I’m only beginning to realize how fortunate we are in this larger walk. This is a rockier road, with more than its share of broken pavement, but hope does come. Hope can come. No matter how far away it may seem.

Step. Step. And step again.

Thinking back, the solitude of the night was always more illusion than reality. When walking, it’s a blessed insulation, a chance to put the trials of the day at arms’ length. On the bigger path, it can feel more like isolation, feeling like nothing can touch this topsy-turvy world you’ve come to inhabit. In both cases, friends and neighbors are closer than they seem.

That, too, is regenerating.

Another night. Another walk. Another journey. But every journey leads somewhere eventually, if you just keep walking.

Let’s see what the next step will bring.

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If There’s Anything …

I’m tempted to just write the words “Thank you” and be done with it this week. After all, what else is there for me to say?

I’m referring, of course, to the steady stream of comments, offers and good wishes that followed the appearance of last week’s column, where I noted that my wife Heather had been diagnosed with multiple sclerosis. That included the oddly celebratory mood both of us had been feeling, since we had finally ripped the mask off our opponent and knew what we were fighting.

Pieces like that are always a little risky to write. My oldest rule for this column, taught to me a long time ago, is “No navel gazing” – anything said here has to be of interest to more than just me. There has to be a universal tie, something for a reader to latch onto and care about, even in the most personal of stories.

Even so, I was shocked at just how many of you turned out to care very much indeed.

Some of you shared words of encouragement or stories of friends and family with MS that kept living normal lives. Others had suggestions for how diet could help Heather, or how activity could. A couple of very powerful accounts talked of their own struggles to put a name to a chronic condition and how isolating and painful it could be to just not know.

And of course, from friends and family across the board, we’ve heard the invocation: “If there’s anything I can do …”

Simple words. Powerful ones, too.

We’ve all said it, of course. Often when we don’t know what else to say. The times when the mountain seems so large and threatening, a mystery too great to even comprehend – and yet, we know we can’t let a friend go up it alone.

And so, when the hard news comes, we reach out a hand. Maybe with a confident grip, maybe unsure of our own strength and ability. After all, sometimes there isn’t much one can do. The late, great fantasy author Terry Pratchett, who died recently from Alzheimer’s-related complications, once said that he appreciated the sentiment but was only accepting offers from “very high-end experts in brain chemistry.”

But it does help. More than anyone realizes.

Pain isolates. It can be the physical pain of an illness, the emotional pain of a death, the all-consuming anguish of news too terrible to comprehend. All of it tries to draw limits, to seal us off from the world, to trap us in our own bodies and heads.

Granted, some withdrawal can be necessary to heal. But it’s easy to get trapped in the cycle, to become convinced that you have to deal with this yourself, that you don’t want to be a burden. It feels like a surrender to ask for help, an admission that you’ve lost control.

And then, someone reaches beyond the walls.

It may not be huge. It may not even be much more than the words themselves. But like a candle in the night, it becomes a small gesture that changes the landscape.

Someone cares.

Someone noticed.

Someone wants to help, even if they’re not quite sure how.

Someone’s heart has opened to me.

That is a powerful realization.

A friend recently reminded me that it’s a gift to allow others to give. It’s a harder lesson than it sounds. But a true one.

In admitting our mutual need, we summon our mutual strength. We become a family. No … we remind ourselves of the family that we already are.

Thank you for that reminder.

“If there’s anything I can do ….”

Trust me. You certainly have.

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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.