People use battle terms when they talk about disease. “Keep fighting!” they say. They talk about health in terms of “winning” and “losing.” They call my life a “battle.” War makes it easier to be merciless. You want to win at all costs. War turns the enemy into a faceless horde, and the consequences of your actions aren’t important. You can scorch the earth if you know that eventually this will end and life will spring forth from the ground again. You can imagine a future in which the scars have been consumed by nature, this history swallowed whole and invisible to a new generation.
In the beginning, I thought like that, too. My disease was my enemy. My medications were weapons. In learning more about my illness, I was arming myself for the future. Sometimes I was advancing; others, retreating. Every day I made tactical decisions in my fight to overcome these obstacles. I was a soldier, drafted into a conflict I didn’t want to fight, but doing it nonetheless.
But this isn’t a war. This is my body. It tries to kill me, but it also allows me to walk at night, balance in Crow pose, drink coffee. It is sick, and it is damaged, but it is the only body I’ll ever have. There is no known instance of a person with no mast cells surviving. They heal my wounds, thin my blood and protect me from infection. It pains me to admit it, but I need my mast cells.
It’s harder to envision this as a war when you know you will never win. I will never be able to kill off all my mast cells; I have to live with this faceless horde. I can only appease them and mitigate my damage. When you think about this every day, it begins to change you. You might still see your body as an adversary, but you grudgingly find ways to work together. And not often, but sometimes, you find that by doing this there are things you can do that couldn’t before. In some ways, you can learn to play your disease to get everything out of your body that you possibly can.
My disease has caused me to accept my body. It is scarred and misshapen and swollen, but it is still here. Looking in the mirror is like visiting a monument to the resistance. We’re outmatched, but we try anyway. Sometimes it is better to work with your enemy than to fight them on principle. There is a kind of quiet honor in that.
Some days it is still a battle. But most of the time, it is just my life, living in this body, trying to work with it.