I don’t handle change well. I have never liked it. A few years ago, I bought a little piece of wall décor that says “Embrace change.” It hangs next to my bathroom sink. Whenever I stand in front of the sink, I catch myself shaking my head as I read it. I keep it up mostly for irony.
My body doesn’t handle change well either. Lately, it is doing things that it has never done for reasons I can’t determine. Last night, my face swelled as I was reading on my couch. I didn’t have any other symptoms and still don’t know why it happened. I sat up for hours, compulsively poking my face and trying to determine if other parts of my body were swelling, while trying not to panic and induce symptoms that could be confused for anaphylaxis.
I’m starting to realize that I’m not having a bad episode that will resolve and return me to my previous baseline. This is different. I am different. My body and my disease are evolving. Whatever baseline I arrive at will be different from before. I can’t wait this out because it’s not going to end. I will stabilize but I will not be the same. My body will not be the same and my life will not be the same.
So it’s time to stop waiting for this to end. I have to learn how to live my life like this. I have to learn how to fit all the things I love and that bring me joy into this smaller space. I have to find a way to get light in here again because this darkness is suffocating. It has swallowed so many things.
I have spent a lot of time staring into this darkness in the last few months. Some of it with an audience, rehashing it for paramedics and ER doctors, mulling it over with my care team. Most of it alone, in moments when I can’t breathe, suddenly struck by the fact that this disease will almost certainly kill me.
But there are bright spots, even if they seem farther away as the arc of my life grows longer. Good days and moments of joy and traveling. Touching the Great Wall of China. Eating Reuben sandwiches. Walking 60 miles in three days. Encouraging words. Hugs. Seattle. Roller coasters. Kindness. Alone these moments are just tiny flecks of light, but you can gather them. If you string them all together, you can make a tiny sun.
It was really warm in Boston this week, almost 70 degrees Thursday and Friday. I packed up my infusion pump and meds and supplies and walked to the beach with Astoria as I infused IV fluids. I sat in the shade at the beach wall as she ran around, flailing around in the sand and playing with her ball. We walked slowly. We didn’t stay very long. But we got there.
The sun only grows if you feed it. Otherwise, those moments are just holes in the dark.
This is my life now. I am learning how to enjoy it. I am choosing the sun.