Ode to the PANS Window

Teetering at the edge of greatness and crumbling.

In small glimpses, when the sun is shining through, in bits and pieces, I get to meet the real you.

Months since the last window opened, you’re there, just trapped inside. I’m grateful for these visits— four days, maybe five.

Big sister starts to cough, your immune system feels the strain. That’s when it fights the invaders and stops attacking your brain.

Suddenly you can dress and brush and do chores without even being asked. Suddenly all these simple things don’t make your system feel taxed.

Speech and thoughts flow like water, you can even write and read. Things that normally take an hour now take 10 minutes with ease.

In just a few days, this window will close and you’ll feel 10 times worse. I’ll lose you for months, and that’s why getting sick is a blessing and a curse.

Like a toddler again, we’ll take steps back, but make it through somehow. I try not to cry when big sister coughs—embracing who you are right now.

If you or someone you know is struggling with PANS, it’s very common to experience this magical window before symptoms of an illness begin, when the person’s immune system is attacking the new virus instead of brain tissue in the basal ganglia. The autoimmune symptoms subside for a few days and you get to see the real person…

I questioned whether to share this because I know there are families out there suffering far worse with PANS than we are right now. Our worst day might be a good day for some. But I also know their struggle doesn’t invalidate my own. And their experience doesn’t make it any easier to witness my baby struggle in her own body.

I need to remind myself…

• It’s okay to acknowledge hard times even if they aren’t as hard as others’.

• It’s okay to cry at the brink of setbacks when the last illness was so intense I barely slept for months and it aged me physically and mentally in immeasurable ways. Am I even recovered enough to start another?

• It’s okay to acknowledge the reason we are doing as well as we are is because of strict diet, routines, an empty bank account, lifestyle choices and hours of daily work that no one outside our home realizes and no one inside our home sees as anything but normal.

So, fuck that first cough. Even if it means I will get to see my daughter’s true self, unhindered by autoimmune encephalitis, for a few days. I know we will get through it, but once in a while we all deserve a minute to acknowledge our struggles regardless of severity or cost of living. Holding it in only leads to eruptions.