“Well … are you OK?” the recipient asked. Apparently, me being the person who’s NOT in the hospital was a little hard to adjust to for some. It was weird for me, too.
I've had more medical emergencies than some 80-year-olds, but I’ve never been in this role – being a “rock” that people can lean on for reassurance and info, starting the phone tree of alerts to family, making the calls that start with, “Hey, so everything and everyone is OK, but (as you may have suspected, that's not actually true, I'm just telling you that no one is dead yet)."
Also, it was a little sad but oddly flattering to see what those who loved me must’ve been feeling and saying when they heard about my worst flares. I mean, I don’t wish emotional pain onto my relatives, but would I want the alternative? “Oh, Katie’s in the hospital? Huh. Well, uh, let me know when she's ... not?” I am fine with it falling short of a melodramatic clutching of the chest and collapse to the floor, despite how extremely flattering and thoughtful that would be.
But the weirdest part was the loss of a sense of control. And I did not like it.
It’s not like I wanted to be in the ER instead of my loved one, just so I could control things. Right?
And I could see everyone around me grasping for bits of the steering wheel – Googling risk factors to mention to the doctor and asking whether Our Beloved One had told the doctor about hers, wanting to fly there right away to be at bedside. Anything we can do to help from here? Not really, unfortunately. Yeah.
But the truth is that we don’t have that much more control when it’s us in the emergency room. That’s why we’re there – we don’t know what the hell is going on, and it seems serious. Or even if it doesn’t seem that serious, we know that with our medical history, it might still end up serious anyway.
In the hospital, I tell myself that without my all-clear, my body won’t be able to die. I actually believe this, despite knowing otherwise. It’s kind of perpetuated in books and movies and TV, too – the idea of telling terminally ill people that it’s OK to let go (and then they shall decide whether to release their grip on the living world or not).
But whether we’re in the ICU or at home, with IBD we don’t really know how much control we have at any given point. Did that meal not go well because it was too big, or too late at night, or because I was stressed when I ate it? Or ate too quickly, or was sleep-deprived, or laughed or cried too hard with a full stomach, or because of some secret cheese somewhere in it? Who the hell knows. But you can’t just give up, either, because all those things – the meals and the medications, the sleep and the stress – do matter and are ways to exercise the control you do have over how you feel.
But trying to change those lifestyle factors for someone else is awkward and annoying, like pulling strings on a marionette that keep getting snarled together. Plus, the marionette is its own being (in this analogy, I guess I'm going with it being a still-stringed Pinocchio) and is slapping you away, like, “How did you even get those? I've got this, stop it!”
And I do have plenty of my own strings to untangle and pull, they’re just brittle and knotted and infuriating. And I’m less concerned about my own performance than about having everyone still around to fret and hover and call each other during my next visit to the hospital.