There are many things I expected to discuss when we became part of the ALD community nearly two decades ago.

Bone marrow transplants? Sure.
MRI results? Absolutely.
Adrenal insufficiency? Unfortunately, yes. Sharing stories with a screen full of people about peeing myself in public? That one was not on my bingo card.

And yet there I was, with a bunch of ALD folks on the last ALD Connect mental health call — sharing stories, sharing tricks to masking pee stains, and in some cases — laughing with everyone until we all considered whether a quick trip to the bathroom might be wise.

It was perfect.

Not because urinary incontinence is glamorous (spoiler alert: it’s not), but because there’s something incredibly healing about being with people who truly get it. The ALD community has a remarkable ability to turn even the hardest, most awkward, most human experiences into moments of connection.

Nobody had to pretend. Nobody had to be cool. Nobody had to hide the realities of living in bodies that sometimes do unexpected things.

Instead, we laughed.

And beneath the humor was something deeper — safety. That’s exactly what this community has been for our family over the years – a safe place. ALD is heavy. There’s no way around that. But somehow, together, we are able to create spaces where we can all breathe a little easier, laugh a little louder, and feel a little less alone. In the last few months this ALD Mental Health call has included topics like Laughing Through the Leaks, In the Bowels of ALD, Carrying the Invisible Weight of ALD: Fear, Guilt and Resentment, Allowing Anger, Boundaries During the Holidays – Protecting Your Peace — all important topics, all raw topics and all difficult to discuss without feeling safe.

And now ALD Connect is encouraging more ALD connections — opportunities for people in the community to gather in person, share stories, and simply spend time together outside of hospitals, conferences, and Zoom screens.

Our family is excited to host one of those gatherings at our home on June 20th.

We would love for ALD folks who live in or near NJ to join us for an afternoon around our pool — eating food, sharing stories, relaxing, and yes, probably laughing harder than our bladders can handle.  Whether you’re a newborn screening family or a family with a beautiful boy with CALD or someone who has lost a loved one to ALD/AMN or a man or woman with ALD/AMN – all ALD folks are welcome!!! And, our house is comfortably accessible for any who may have mobility issues.

No perfection required — just people showing up exactly as they are. Which, in my experience, is where community begins.

Love, Jess

At the end of the mental health call, we always share a guided meditation. Here’s a bit from this month’s script:

Because community is not built through perfection. It’s built through honesty. Through vulnerability. Through laughter… Life is heavy sometimes, but laughter lightens the load. And community reminds us that we never need to carry it alone.