It was a Saturday when I found out about Seth. One of my masto friends called to give me a breathless update at almost 11pm.
“He’s in liver failure,” she said with a rising lilt in her voice, the kind that barely masks panic.
I laid down on my living room floor while we talked. Seth is my friend who has MCAS and he is three years old.
Less than 48 hours before, he had begun presenting with severe neurologic deficits. By Sunday morning, he could no longer speak, see or clot properly. He was air lifted to a different hospital with tanking vital signs.
The next several days were a blur, more one long impossible experience than individual actions. Things were grim. For a time, it looked very much like he would not survive.
Seth’s parents are good friends of mine. Our friends and I communicated every piece of information to each other and anyone we thought could help. I woke up to messages every morning asking if there was any news. I was 3000 miles away and out of helpful ideas and utterly powerless.
By some miracle, Seth did not die. He is still in the PICU and will need involved care for some time. There is still not a great treatment plan for the future. But he is alive. And he is still Seth.
On Friday, I found out that my friend, the friend who called me about Seth, was having her own medical event. Things were fairly progressed by the time I was in the loop. It was literally sickening. A couple of days passed until I got a phone call telling me she had a catastrophic injury. I ran to the bathroom and threw up.
There are moments when you lose pieces of yourself. Sometimes it is organic, a skin shed as you move forward. Sometimes it is violent, a piece carved out with deep gouges, more than you could afford to lose. A piece you never get back. A piece that leaves a hollow so deep that no matter what you use to shore up the edges, it never feels strong again.
I want to go back to the time before this violence but I can’t remember what it feels like. It’s already gone.
These are my people and they are every bit as connected to me as the family I was born into.
How could this happen?