I turned 30 on my last birthday. It was very cold outside, but it was dry. I stood around a fire with my friends that night and looked for the moon. It was barely alive, just a white sliver hiding behind the clouds. It matched my mood. The knowledge that it would grow to be heavy with light in the sky was little consolation.
The day before my birthday party, I cut my vacation short to see a rheumatologist. She was sympathetic and wise, but largely didn’t know what to do with me. She sat with me for two hours while we talked in comfortable armchairs. It didn’t help much in the way of the treatment, but sometimes unburdening myself is treatment enough.
I watched as my sister lit the candles on my birthday cake. I wasn’t in much of a wishing mood. I leaned forward and for the first time in several years, I did not wish to get healthy in the coming year. Instead, I wished for a world without mast cell disease, and I meant it.
I think about mast cell disease all day long. I dream about mast cell disease. When people ask how I’m doing, I am completely honest. I read mast cell papers, write mast cell articles, answer mast cell questions. I tell stories about this mast cell life I live because I think if I try hard enough, I can make people understand what it means to live like this.
But all these words can’t make them feel the way my pain throbs under my ribs. They can’t make them literally hear connective tissue tearing when I reach too far to tip something closer with my fingertips. They can’t make them feel the silent terror that swells anew every time I put something into my mouth.
I tell people about my life in graphic detail because I think if I try hard enough, I can make them care about mast cell disease. And maybe if enough people care, someone will do something about it.
Someone was telling me about their recovery from surgery today. I listened while standing on one leg, a habit I developed when I broke two bones in my lower back as a teenager. “Oh, that happens because of mast cells,” I interjected. “Mast cells are involved in tissue remodeling.”
I find myself saying things like this a lot lately. “That’s because of mast cells.” Scab itchy? That’s mast cells. Flushed after running? Mast cells. PMS? Mast cells. Mast cells are everywhere, doing everything, all the time.
What I find very strange is the fact that this ubiquity of mast cells is recently making me feel more connected to people. Every time I tell someone that their mast cells have done something to them, I feel like I have forged a tiny bit further in this daily struggle to make people care.
Living with mast cell disease seriously sucks, but I can’t deny that it forces me to live my values. Last year when I wished for a world without mast cell disease, I knew that it would take brutal, public honesty about my life and my disease. I knew that it would take constant studying, constantly talking about my personal health, and constantly being willing to educate people.
In the last month, I have been asked to talk about life with mast cell disease to key opinion leaders, researchers and doctors in the mast cell community. I have been approached by a start-up looking to lay the groundwork for mast cell research. I have received an overwhelmingly enthusiastic response to an upcoming department presentation I am giving on mast cell disease.
I know that going to a presentation won’t make them understand what it feels like to live in my body. But I don’t think that’s necessary for progress to be made. Maybe all we need is for them to say, “I bet it sucks to live in a body like that.” Maybe that’s enough.
This is what change looks like. This is what it looks like when we’re a little closer to a world without mast cell disease.