Try not to burn the place down: For Ginger

On Sunday night, a friend got in touch to let me know some truly awful news: that Ginger Newton, fellow mast cell patient, connoisseur of lemon cakes, purveyor of dark humor, and friend, died at home the day before. She was 49 years old.

I knew Ginger for years. One of the more fascinating aspects of rare disease communities is that you often develop close relationships with people that you would otherwise be unlikely to know. These bonds are not generally related to personality as much as they are derived from a common suffering. But that wasn’t the case with Ginger. If I met Ginger in real life, we would have been friends.

She was a thoroughly entertaining person. She was loud and sarcastic. Ginger had a razor sharp wit that managed to bite without devouring you. She was unapologetic and shameless. In a strange way, the fact that these qualities endured in her gave me hope for my own future as a loud and sarcastic woman.

Ginger was also very knowledgable about mast cell diseases. When I met her, I was piss my pants terrified of what was happening to me physically. I was spending a lot of time stumbling through threads in mast cell groups and googling things. Since that is basically a two step recipe for scaring the shit out of yourself, I was pretty wound up by the time I talked to Ginger about my health. She answered my questions evenly and was neither impressed with nor scared of my disease. I was overwhelmed and scared and needed help. And she helped me, something I will never forget.

I have spent all week trying to figure out how to write about her. I have a lot to say. I feel a lot of things about Ginger’s death and they are so contradictory that it’s hard to get the thoughts out of my head cogently. I am sad. I will miss her. We didn’t always get along and we disagreed a lot. But I will miss her and mourn her.

I generally write posts and essays around a particular theme, usually how I feel about something. But I think the theme here is that there isn’t one. Sometimes things just happen and they don’t serve any purpose. I think this is one of those times.

Goodbye, Ginger. I am grateful to have known you even if things were difficult at the end. Thank you for the years of reassurance, friendship and help that you gave me. Thank you for reminding me that it’s okay to have strong emotions. When I see a lemon tree or use the word ‘fuckety’ or hire a cleaning lady that can’t clean without ruining furniture, I will remember you.

I don’t know where we go when we leave these bodies, but I think we go somewhere. I’ll see you when I get there. Try not to burn the place down.