Open Calendar and Booked Days

I spoke with someone this week who spent nearly a decade in unspeakable agony. Once they received a PANS diagnosis and began IVIG, they improved within days. As we wrapped up our conversation I asked if they were angry about the suffering and the lost years.

“No, I don’t think so,” they answered. “This is just my life.”

I have been repeating almost the same sentence to myself for the last month. I’ve been muttering it when I’m awake at 2 am listening to my daughter wail and when I compare our life to other families on vacations or at end-of-the-year performances. When I superimpose this year over last. Or over the year before. Or over a decade ago. The sentence bouncing around my head is this:

Live the life I have.

In this life, we don’t plan vacations, or weekends, or often, phone calls. There is no school. We don’t have visitors. We don’t plan meals or have adventures. Our calendar is open but our days are booked.

Living the life we have also means that we have accepted that David cannot work right now. We have about 25 weeks left of family medical leave and David is taking it. It means that instead of getting paid as a software engineer, he will receive a minimal governmental stipend. But it also means that he is available for the hour-to-hour vicissitudes of the life we have. There are times, like yesterday, when K is suffering and I can attend to her. But in a second’s notice, her needs will become so physical that David must step in.

The life we have also has goodness. This morning, F and I went for coffee. We saw our first poppy of the year and said goodbye to the irises and lilacs. Before starting this essay, I rubbed K’s back under her trusty amazon blanket and sang a song about loving her today. “Why did you say today? You love me every single day forever.”

Oh thank god. She knows.

And David and I still laugh. Last night it was when he realized that I do not know the main character’s name in the show we have been watching for months. (David here, editing: The show is The Bureau. The character’s name is Guillaume Debailly, but he’s a spy and his alias is Paul Fefebvre. His codename is Malotru. What did Jessica call him? Paul Maltraw.)

On the surface, you might also see a contradiction in my days because while I want to accept my life, I refuse to accept the system that is stopping children from accessing care. I turned in my 5000 word PANS feature this week; it’s schedule to come out next month. I am barrelling forward with this podcast that I know will save lives. My days are my days, but the injustice of the world is mutable.

We are one week from the seed & spark deadline. I am honored by the donations we’ve received so far. If you have considered donating, please do so here.

Also, I have a fiscal sponsor now and if you would like to make a large, tax-deductible donation, please reach out to me. My personal donation page will be live there soon, but in the meantime, I can give you instructions.

slicejessica [at] gmail [dot] com

And if you know someone in a position to make a very large contribution ($25,000-75,000), please reach out. I can put on my big pitch performance.

The teenager I spoke to this week didn’t need to suffer for a decade. We can do two things at the same time: we can accept our lives as they are while we work to change the entire world.