Asking for your help

Some news and a request

The first Mary Oliver poem I loved is called Two Kinds of Deliverance. There’s a section that echos in my head every spring:

next year

when spring

flows over the starting point I’ll think I’m going to

drown in the shimmering miles of it

Spring has tiptoed into Toronto. It snowed a bit last weekend. But also, we have cherry blossoms now and tulips and one in five trees has leaves. Soon I won’t be able to see inside the bedrooms across the alley. Soon, the tree out front will touch the one across the street. Soon, F and I will plant our tiny vegetable garden. Soon, David will mow the lawn. Soon, K may be able to leave the basement for longer and longer stretches.

As I’ve written about, K has been profoundly ill with PANS for over seven months now. Getting the appropriate medical care has taken a herculean effort, despite the fact that I am one of the most equipped people to do so. But, thankfully, she is now getting the support she needs. She is receiving vital treatments at the local children’s hospital. Thank goodness.

Our lives are almost unrecognizable from one year ago. From eight months ago. We have mostly been trying to survive, but part of surviving for me is trying to understand and trying to change an untenable status quo.

I spent the winter reporting a story on the gap between research and clinical care for this illness. I interviewed dozens of PANS researchers in the United States and even more families. I wrote a long piece about all of it that will be released this summer in a major publication.

After I finished the piece, I started to think about what I could do next to improve the absolutely inhumane care that children who develop this illness receive from many institutions. For example, one family in California visited the ED 220 times before receiving a diagnosis; the son’s behavior was so extreme — and so poorly understood — that he was put in zip ties and his dad was investigated for child abuse.

There are a few concrete changes that could make a world of difference for people with PANS and I have a plan.

Step One: I’m making an audio documentary called St. Vitus Dance, which will be released as a podcast and will be produced with the inimitable Helena de Groot. It will be so riveting, so scientifically airtight, and so high quality that it will lead to institutional progress.

Helena and I plan to make a pilot episode and have launched a Seed & Spark campaign to raise $20,000 — enough to produce part of the first episode. We would be honored if you could donate here:

On a walk last week, I said a prayer. For our family. For K. For all the kids who have been decimated by this illness.

May her joy be so profound that I think I might drown in the shimmering miles of it.