One of my best friends had a sudden medical emergency a few months ago.
“This is hard because we don’t know how to deal with it,” one of our friends told me. “With you, you’ve always been sick, so we expect that you’ll be sick. But we don’t know how to deal with this.”
I knew what she meant. I felt the same way. “I like it better when I’m the one who’s sick,” I answered. I feel like if I have to live with pain and vomit and the shudder of anaphylaxis that it should shield everyone I love from serious illness. I would take all of it, for everyone, if I could. But of course, that’s not how it works.
I have talked a lot recently about how important the mast cell community is to me. I am so lucky to have all of them in my life and I would never exchange those relationships for anything. I am grateful for them every day.
The flip side of belonging to a community like this is that you gain a lot of sick friends. On a weekly basis, I hear that someone is in the hospital again, or someone needed multiple doses of epi, or someone had an increase in their serum tryptase. Every time I learn something like this, the utility of my experience living with chronic illness is apparent. I can take pretty much any medical news without flinching. No amount of bad blood work or organ damage fazes me. I am glad that I can support these people when they are having a hard time, as they have supported me.
While all my masto people are special to me, there are some that I feel a particular kinship with. I call them my people. I have girlfriends who text and call often, a constant source of bidirectional support. There are a couple of little girls who I feel a sort of responsibility toward. There is a teenager who reminds me a lot of myself. I worry about them, but I take comfort in the fact that I am still here, and so I believe they can make it at least as far as I have.
And then there are the people whose disease is more advanced than mine. When they suffer, it feels like looking into a crystal ball and seeing my own future.
I have been fortunate to meet someone whose journey closely parallels mine. We talk on the phone and tell bad, dark jokes about our health and laugh. It is a very bare relationship. We experience the turmoil and sadness and anger in the same way. The gift of companionship on this road cannot be underestimated. Some days, it is all you have.
Finding out that any of my people are in trouble is physically painful. It feels like some clawed creature tore the flesh off my chest and my heart is exposed and unprotected. I worry about them all the time. It is the only thing I can do. There is a lot of wait and see in the mast cell game. There is a lot of “we’ll see how this turns out.” You never know how people are going to emerge from this latest crisis. Even if they aren’t in mortal danger, they could lose their house, their job, their marriage. I feel all these possibilities acutely.
One of my people is in a world of trouble right now, several thousand miles away. I was talking to someone about him today. She noted that it is a double-edged sword, belonging to a community like this. You both have validation and support and also are guaranteed to witness the suffering of those who are close to you. She is right. But if that is what I have to take on in order to have these people in my lives, it is worth it.
I love you guys. I mean it.
It is an honor to share your pain.
It is an honor to worry about you. I will never stop.
This pain it evokes in me, I am protective of it. It reminds me how much I care about you. It reminds me that this journey we are all taking matters.
I hope that we all live long and happy lives in spite of mast cell disease. But if that doesn’t happen, I will be with you, until the very end.
Stay strong.