Extreme Jenga: The Saucepan Edition

During a session with my pain therapist the other day I came up with a great analogy that helps explain the stress in my life. Actually, I came up with two, but the first one was my favorite. I was explaining that I often compartmentalize my feelings, especially when it comes to dealing with my RA. It’s just easier to put things off and deal with them later than live in the moment with everything.

That very morning I was explaining the concept to my best friend as she drove me to my appointment. She was marveling at how I took bad news so well, and confessed she didn’t know if she would be able to do the same had she been in the same circumstance. I asked what she meant and she reminded me of a conversation we’d had the week before. I was telling her that yet another doctor had brought up the “W” word. “W” these days only stands for one thing, and it’s synonymous with the kind of dirty word your mom would wash  your mouth out with soap over. Wheelchair. The very mention of this word makes me shudder as if I’ve heard acrylic nails scraping down a chalkboard.

My friend praised me on how well I was dealing with the continual bad news I’d been receiving on what now seemed like a weekly basis. I shook my head and laughed a little. I explained that it wasn’t that I took it so well, but more that I hadn’t actually processed the information yet. That the easiest way for me to deal with the ongoing bad news was to compartmentalize.

“I’m putting things on the back burner, until I have adequate time to process them” I told her. Later in my doctor’s office I explained the same thing. Only this time, in the safety of my therapists office, where all my emotions could flood out of me without the fear of being judged, I told him that my system was failing. The problem with throwing things on the back burner to deal with later is that there are only two burners. So, if you’re not careful, and you don’t start processing some of that information, your pots start to stack on that stove top. And before you know it, you’ve got a game of Extreme Jenga: Saucepan Edition towering over you, hot liquid bubbling up over the sides and spilling on to the floor. Except it’s not the floor, it’s the rest of your life. And if you don’t know what that looks like, you could have witnessed it for yourself three weeks ago in the Kailua Target. It’s a six foot tall woman in her thirties crying in the middle of the aisle because the store was out of a product she didn’t even really need in the first place.

This is one of the ways Rheumatoid Arthritis creeps up on you. It’s not just the physical symptoms that hurt you from the inside out. The emotional turmoil this disease puts you through is just as hard. Having to go from living a normal life, to your world being turned upside down is really challenging, not to mention exhausting. You realize how much you took for granted when you were healthy. Like washing your hair. Doesn’t seem like a big deal when you’re in the shower does it? Just a regular part of your day. Well try doing it when your hands don’t work. Spending ten minutes with the water falling around you as you struggle to figure out how to squeeze the shampoo out without crying in pain. And once the goo is in your hand you have to massage it into your hair, which is pretty difficult if you can’t move your fingers. Sometimes you have to choose between washing your hair and washing your body, because there is no way they’re both going to happen.

Then there’s circumstances you really can’t avoid, like hearing what your doctor had to say this time. Never knowing when the bad news is going to come. Hoping that today he tells you that everything is just the same. Because the news is never good, so no news it’s the best thing you can hear. But then there’s days like last week, after a few unfortunate x-rays, where you have to hear the nurses and doctor “hum” and “ha” for a few minutes. Except it’s never a few minutes. Every minute spent with my Rheumatologist feels like a thousand minutes. It feels like I’m forever waiting for bad news. And what really pisses me off is how they think mentioning that I might want to consider using a wheelchair is going to put me in a good mood. Like I wanted this. Like I’m happy I’m disabled.

So I compartmentalize. I push my feelings onto that back burner and I deal with it later. But then later something else happens, and I have to push that back too. And then I have a flare. Or a migraine. Or just a bad day where I can’t deal with anything. Those pots pile up. My jenga game is getting more extreme by the second. I’m just trying to handle being sick, disabled. Maybe my system isn’t the best. But at least I’m trying.

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