Month: May 2015

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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.

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Making Faces

At the risk of letting my inner geek out, I think I’ve figured out the real reason Spider-Man wears a mask.

Oh, don’t worry. This isn’t one of those oddball columns that discusses Superman’s immigration status or Batman’s patent protection. You don’t have to know the mighty Marvel footnotes in order to hang around here or care about how Hollywood treats caped crusaders. (Though if that sort of thing does light your fire, I’ll track you down for coffee later, OK?)

No, this has its roots in more familiar territory: in hospitals, in family, in simple conversation. And, as with so many things in this space, it starts with Heather and Missy.

My wife Heather got to spend the night at Good Samaritan hospital recently. Regular readers may remember that we’ve been chasing some medical mysteries worthy of Dr. Watson and not getting much in the way of answers. To move things along, Heather’s doctor suggested it was time for a sleepover, so that all the tests Heather needed could be run at once instead of strung out over weeks.

Logical. Helpful, even. Certainly appreciated.

But it did mean explaining a few things to Missy.

Despite her mental disability, Missy can be pretty sharp. Sharp enough to guess that when one of her guardians goes into the hospital and doesn’t come back right away, something may be wrong. Vanishing without explanation was never an option – not only do we respect her too much for that, but she’s stubborn enough to sit in the bay window for hours waiting for someone to come home if they’re not back on schedule.

So I took her up to the hospital in the afternoon and let her see that Heather was in good spirits. Missy lost her own mom to cancer, so we assured her that this wasn’t like that, that the doctor was just having a look around to see what was going on so Heather could feel better.

Even so, on the drive back, I could see Missy wasn’t entirely buying it. Not judging by the sniffs and red eyes and careful glances out the car window.

“It really is going to be OK, Miss,” I told her. And I believed it. But at the same time, as I tried to keep Missy’s worries at bay, I felt a sudden kinship with the ol’ webslinger.

Spider-Man, like I mentioned, wears a mask. The comics always have plenty of good reasons, starting with the need to protect his family from supervillain retribution. The fact that his real-world boss is a Spidey-hating jerk offers some extra incentive.

But masks hide more than just an identity. They hide feelings, too, especially fear and anxiety. Comic geeks know that one reason for the wallcrawler’s constant string of wisecracks in a fight is that he’s covering for nervousness, so that he can keep being a hero, to the world and himself. A mask makes that all the easier.

And it’s one that I think many of us have put on a time or too ourselves.

A good parent doesn’t lie to their child, or a guardian to their ward. I firmly believe that. But there are times when you stay brave to keep them from worrying, when your own fear and uncertainty have to stay out of sight so that you can help them through a tough situation. There are times when sharing everything you know and feel would just make the situation harder, especially when the real quest isn’t for information – it’s for reassurance.

I’ve been on the other side of this long ago, when Mom had to deal with breast cancer while my sisters and I were in grade school. We knew that Mom saw a lot of doctors and even went to the hospital sometimes. But Mom and Dad never weighed us down with stress we didn’t need. We knew we were loved, we knew we were safe, and we never knew about the anxiety they felt in the small hours of the night until much later.

There’s a funny thing about reassurance, though. If you provide it enough times, you can start to feel it yourself. “Fake it ‘til you make it,” Mom is fond of saying. I can’t argue: not only is Missy doing better, so am I. In talking to her, I was somehow talking to me, too, and making both of us stronger.

Sometimes, over time, the mask can create the hero.

And that’s a marvel more real than any radioactive spider.

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Words of Honor

“He wrapped himself in quotations – as a beggar would enfold himself in the purple of Emperors.”

— Rudyard Kipling

 

Slowly but surely, the words are claiming the wall.

Muhammad Ali watches from one point, Saint Paul from another. Novelists share space with masters of social media. It’s a small crowd right now, but I know how quickly it will grow, piling wit onto wisdom onto timeless endurance.

I ought to know. We’ve been here before.

And as before, it’s more comforting than a few rows of taped computer paper has any right to be.

 

“In the garden of literature, the highest and the most charismatic flowers are always the quotations.”

— Mehmet Murat ildan

 

It started, as it often does, with Heather’s health. My wife is a lovely, funny, creative and tough-minded person. But she also tends to attract chronic illness the way a car accident attracts rubberneckers. Years ago, before we met, it was Crohn’s disease. A couple of years after we married, ankylosing spondylitis came along for the ride. Endometriosis used to be part of the mix, and we’ve never been quite sure if lupus was milling about in the crowd or not.

Lately, as some of you have read here, there’s been something new. We’re still pinning down all the details – which is a bloodless way of saying that we’ve been going through a lot of sleepless nights and painful days trying to figure out what in blue blazes is going on.

One morning I had just checked in with my boss to mention that I was going to have to work from home – again – in order to help Heather through the day. She sent back her best wishes for the struggle – and a few words from Muhammad Ali for comfort.

“The fight is won or lost far away from witnesses,” the words read, “behind the lines, in the gym and out there on the road, long before I dance under those lights.”

And all of a sudden, I remembered.

 

“Have you ever observed that we pay much more attention to a wise passage when it is quoted, than when we read it in the original author?”

— Philip Gilbert Hamerton

 

The last time something like this happened, back in Kansas, Heather had had to spend far too much time in the bathroom. (Having Crohn’s in combination with severe back pain will tend to do that.) So, to make life a little more bearable – or at least entertaining – I started to paper the opposite wall with quotes.

Like many writers, I’ve always been a fan of the well-chosen word, whether from prophets or Muppets. A good quote is a quick moment in life when your mind suddenly blinks and then laughs, or winces, or nods “Yes – yes, that’s exactly how it is.” They’ve decorated my college papers, my desks, even my email at work.

And now, they decorated my bathroom. Heather found the first one and I quickly gave it a lot of brothers and sisters. Soon, you couldn’t drop a hand towel without coming across the latest aphorism or wisecrack.

Now, we seemed to be in a similar place. Maybe it was time for a similar remedy. This particular illness was keeping her confined to bed for much of the day, so I picked a readily visible bedroom wall and went to work.

Some space went to encouragement. (“We must live lives of unstoppable hope.” – Stant Litore.)

Some was claimed by humorous sympathy. (“I’m not clumsy. It’s just that the floor hates me, the tables and chairs are bullies, and the wall gets in the way.” – Liza Mahone.)

And some, inevitably, went to doctor snark. (“I firmly believe that if the whole materia medica could be sunk to the bottom of the sea, it would be all the better for mankind and all the worse for the fishes.” – Oliver Wendell Holmes, Sr.)

I don’t know. Maybe it’s not doing anything but using up ink and Scotch tape. But maybe, in its own small way, it helps. It’s a way to bring life over the walls, to remind us that someone’s been there before, that there’s more to think about than “Ow, ow, ow.”

Maybe, to borrow from Miguel de Cervantes, these “short sentences drawn from long experience” are better medicine than we know. I hope so. I really do.

Sticks and stones can break our bones. But words can maybe heal us.