The idea of forever

You lose a lot when you have mast cell disease. You lose a lot of things that you enjoy. Some that you love. It’s easier in the beginning because you still have so many things. You don’t miss the first few in a serious way. But then you lose another few and a few more until you are left with a handful of painstakingly engineered pieces. You lose foods and drinks and sometimes you lose eating. You lose time. You lose people. You lose experiences and independence and dreams. And you know you will lose more.

Some days it feels impossible to live completely in a space where I am not exposed to anything that makes me sick. It is a challenge of epic proportions. It requires a rigid plan and the discipline to not deviate from it. After my ostomy was placed, I received a litany of restrictions from my doctor. I committed to complying with an almost religious fervor. I wanted it to work so badly. I didn’t travel. I didn’t try new foods. I didn’t sit in sunlight. I didn’t sit outside in the heat. I didn’t do anything that increased my heart rate. I didn’t eat or drink anything that had a drop of alcohol in it. I didn’t take hot showers. I didn’t drink tea. I kept a rigid cleaning schedule with homemade cleaners. I had my carpet torn up and put down a new floor. And a million other things. It dominated my life.

In the late fall of 2013, I was pretty up a creek with my mast cell disease. That October was miserable. I was so sick again and I couldn’t figure out why. I had done everything I was told. Every last thing. I had done everything right. It was frustrating and maddening.

But some tiny place inside me, a glimmering light obscured by my fear, felt liberated. This disease will do whatever it wants. I have no power over it. I never did. I know that some people feel that they can control their disease, that “they have masto but masto doesn’t have them.” And that’s fine but that is not how I feel. This disease has me. It has me.

I spent years feeling like I was complicit in my disease. That every time I was sick that it was because of something I did. And it wasn’t. It isn’t. It’s because I have this disease. I live around these huge losses and stay safe as much as I can and try not to piss off my mast cells. But when they get pissed off anyway, I no longer feel guilty.

I spent so much time living this half life because I was so afraid of what would happen if I didn’t. Years when I was still pretty able, even with mast cell disease. It is hard to think. I lost so much time. I lost so many days when I could have had fun or been happy. So many days when I could have felt sunshine on my face or had tea on my back porch on summer mornings or slept with my windows open so I could feel the warm breeze of summer nights. I realized too late that not doing these small things I loved would buy me very little. That I could live with this disease without having a sterile and deprived life.

I want to go back and scream at myself to not waste this time. To be happy. To not wait. That if my soul needs something that I should do it right now. Because one day I will wake up and there will be no time left to do it. It happens sooner than you think with a disease like this. So fast.

Forever is just an idea. There is no endless future where there will always be time to do the things that fulfill us. There is only now. Don’t waste it.