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.