The Land Outside Time

As Heather watches social media, she’s starting to get a sense of satisfaction. Mixed with more than a little déjà vu.

“So is today Blursday?” “No, it’s Blendsday.”

“Longest … month … ever.”

“You guys, I just missed a call because I forgot it was Friday.”

On and on they come. An endless stream of quarantine-laden quips, comments and memes, all on the same subject: time has stopped. Or lost all meaning. Or slowed to a pace where you can feel continents drifting.

For most of us, it’s a new reality.

For Heather, it’s yesterday. Whatever day that was.

“Now they get it,” she told me. “Now they know what it’s like.”

For those who joined the game late, Heather is chronically ill. OK, that doesn’t really go far enough. Heather is a walking encyclopedia of chronic conditions, who once inspired a doctor to call in his intern for the appointment because he was never going to see another situation like this. Crohn’s disease. Multiple sclerosis. Ankylosing spondylitis. At one time, endometriosis. The list goes on and on, in a list of melodious-yet-poisonous syllables that have brought neighbors to bewilderment and spell-checking programs to tears.

Life has gone on. It’s had to. But it goes on in different ways and follows different rhythms than most of the world. Or at least, it used to.

With the descent of COVID-19, the gap has narrowed significantly.

Now others walk the path she knows so well and begin to learn the itinerary.

There’s the loss of time when you haven’t been able to leave the house for a while. The calendar turns into a map of the Great Plains, a featureless expanse devoid of landmarks, where one stretch of the road looks much like another.

There’s the uncertainty in making plans. Today’s intention may turn into tomorrow’s frustration, whether it’s due to a flare-up or a new emergency restriction imposed by executive order.

There’s the persistent watch for any medicine that might make a difference, reinforced by the knowledge that none of them are as simple as aspirin. They’re expensive, they’re in limited supply, they’re not guaranteed to work, and they come with a long list of side effects that can be as dangerous as the disease itself.

Most of all, there’s the constant background awareness that health is not a given. That you could become sick at any time without warning. And that if you do, there is no cure.

It’s fatiguing. Frustrating. Maddening at times.

And now, it’s everyday life. For most of us.

Which means there may at least be a cure for the most maddening aspect of all. The part that Heather calls “compassion fatigue.”

I’ve mentioned this before, but it’s worth revisiting. As a society, we’re not used to serious illnesses that don’t kill somebody but don’t go away. We want resolution. We want answers. We want to be able to think about something else for a while.

So when a friend or loved one reveals that they have a long-term condition, the first result is amazing compassion. You get offers of help, notes and calls, little bits of thoughtfulness just when you most need them.

But then – nothing changes. And people get tired. “I’m so sorry, how can I help?” slowly turns into an unspoken “Do you STILL have that?” It’s almost a resentment: how dare you stay sick and remind us that life isn’t always so wonderful?

No one can be Saint Francis for 24 hours a day. I get it. No one’s asking for constant mothering. Just for understanding.

And maybe, just maybe, that understanding will be a little easier to come by now.

Most of us are lucky. We will get to routinely leave the house again. We will be able to resume normal lives, dispel the fear, restart the world we know.

When it happens – don’t forget how this felt. Keep hold of that memory for the sake of those still caught between ticks of the clock.

Long after social distancing goes away, there will still be a distance that needs closing. Use the memory of now to build that bridge.

I know Heather will appreciate it. And many like her.

See you next Blursday.

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