Until the light reaches me

Every year for several years, before I had any idea why, I would get sick the third week of September. It was bafflingly consistent. The fact that it was so reliable led a number of doctors to insist that this was clearly psychologically induced, a re-experiencing of some nameless trauma.

It took me longer to figure this out than it should have, if I’m being honest. I was diagnosed with mast cell disease in 2012 but it wasn’t until the fall of 2013 that I figured it out why I always got sick that week. As a student and instructor, my life had been built around the school year. Every year, I would recommit myself to exercising, which I often stopped over the summer due to feeling sick in the heat. The first week of exercise at the start of the school went fine. The second week of exercise was progressively more difficult but I was still intoxicated with the impossible optimism of the new school year and pushed through. Then I would crash in the third week of September, often in spectacular fashion. It would take me weeks to recover.

Turns out I’m not the only mast cell patient who has trouble this time of year. As a community, we just cannot hang. For the last several years, I have affectionately referred to September and early October as the “Death Zone”. I’m kidding but only just. You may remember the Death Zone for such features as Seth’s miraculous survival despite significant evidence that he would not, and Kristina’s brainstem stroke. The rest of us take turns shocking and puking and sleeping for days while Mother Nature sorts out her issues. Despite my cliché love of fall, pumpkin flavored things, Halloween, boots and thick tights, it is always an uneasy time for me.

Last week was the third week in September and good grief was it a week. As if his body has a preternatural need to reset itself during this week, Seth once again crashed. He is hanging in there. The similarities between last year and this week are uncanny and not a little spooky.

I met Yssabelle and her parents a few years ago when she was airlifted to Boston after shocking on a weekly basis. She is 7 now and one of my little people. Yzzy has dense colon infiltration like me and a host of complicated SM issues. True SM in children is extremely rare and she has true SM. She has had a difficult few years and has spent a lot of time in the hospital.

This past year has seen the advent of a truly terrifying series of episodes: without any obvious provocation, and irrespective of her mast cell reactivity that day, she would spike fevers of 104F and 105F, have severe abdominal pain, and her metabolic function tests would tank. After a few days, it would just stop. She has had over a dozen of these episodes this year and every time, no one knew what it was and was not particularly concerned with diagnosing it.

Yzzy spiked a screaming high fever and started vomiting blood about two weeks ago. This time, someone knew what she had. She was diagnosed with another rare blood disorder, hemophagocytic lymphohistiocytosis (HLH). In pretty short order, she was on a hemonc floor being prepped for chemo by a team that didn’t know her.

There are a lot of things I don’t like about having my life all over the internet but it can be really helpful sometimes. The blog serves as a credential; if a provider wants to know if I actually understand these diseases, they can google me, find my work, and verify that I do in fact have a deep understanding of these conditions. I talked to Yzzy’s hemonc on Monday night and we talked about rescue protocols, anaphylaxis, and her generally complicated health. I poured over literature all week and spent the next few days putting together directly cited primers for Yzzy’s team. (The primers I have been posting are the ones I prepped for them).

It never ceases to surprise me that after so long, I can still be terrified by the danger of these lives we lead. It’s different with mast cell disease. I know mast cell disease. I know anaphylaxis. I can rattle off facts seconds after being woken out of a deep sleep. There is almost no thought involved anymore when I answer questions. I just know. And because I understand, I am not as scared.

But while the danger of mast cell disease feels smaller to me than it really is, the danger of everything that’s not mast cell disease feels much larger. I’m experiencing this right now with Yzzy but I have experienced it many times before.

It never gets less scary and is lonely somehow, something you have to experience on your own to contribute to this common desperation. There is so often nothing to be done. The fact that it will end at some point is little consolation.

I didn’t realize when I got sick that I would never get used to it and that it would never stop being scary. I didn’t realize how much worse it would be to watch people I care about suffer than to suffer myself.

But it is. I’m caught here in the void between two distant stars, trying to hold on until the light reaches me.