I was scrambling yesterday afternoon. I got home from work and had one hour to make dinner, feed Tupelo, feed and medicate Jack and get ready for an ALD Connect call. 40 minutes in I felt like a rock star. Jack and I were eating diecious chicken thighs, egg noodles and even some salad. I was almost relaxed as I left Jack in front of CNN for a minute as I went to put a brush through my hair, but when I walked back into the room Jack was in tears. While lately I too find myself crying while watching the news, this was different. His tears were primal. I looked at the TV screen and there it was – a St Jude’s commercial — it gets him every time. I got Jack up off his stool to give him a hug while I reminded him that those kids are all getting the help they need thanks to science and the generous donations of people like us;-). That is when I noticed that Jack hadn’t just let go of emotion — he had a massive poop in his pants.

I had exactly five minute to get him cleaned up before the start of the call. We were out of wipes which were quickly replaced by wet paper towels and his clothes all landed in the laundry because somehow his diapers (he wears two at a time) hadn’t managed to complete their job. I did a quick clean of the bathroom, sat Jack in front of his show – not CNN – and quickly sent Dan a note explaining why Jack was just wearing diapers and that he could use a shower before bedtime. Then I took a deep breath and sat down to facilitate ALD Connect’s monthly Stuctured Mental Health Call. This month’s topic was In the Bowels of ALD.

If the story above made you cringe, you would not have enjoyed the call. If the story made you laugh and think of some stories of your own, then perhaps you or someone you love has ALD (or another fabulous condition that has glamorous symptoms like fecal incontinence).

I can’t share much from last night’s call, but it was incredible. Some folks gave valuable advice of things that have helped their smelliest of symptoms. Some people shared what they keep on hand when heading out in public. And some people shared their best poop story. The chat was on fire with all sort of added information and everyone on screen was frantically nodding their heads and encouraging each other. And, we all laughed. We laughed a lot.

I left the call as I always do — feeling grateful to have a community where I feel safe. Safe enough to be completely myself. Safe enough to share my fears. AND safe enough to share a shitty story.

I end each of these calls with brief guided meditation. 

Letting Go of the Embarrassment

Take a moment to get comfortable.
Let your body settle… feet grounded… shoulders soft.

Gently close your eyes, if that feels okay.

Take a slow breath in through your nose…
and exhale through your mouth.

Again… in…
and out.

Now bring to mind a moment of embarrassment.
Maybe something small… or maybe something that still makes you cringe a little.

And if it happens to be one of those moments…
a very human, very real, body-related moment…
you’re in the right place.

Just notice what comes up.

Where do you feel it in your body?
Maybe in your chest… your stomach… your face.

You don’t need to push it away.

Just notice… and breathe.

Now gently remind yourself:

“I am human.”

Bodies do what bodies do.
They are not always neat or predictable or convenient.

And every single person you know—every single one—
has had moments like this.

You are not alone in this.

Imagine placing that moment in front of you,
like a small object you’ve been holding tightly.

Notice how much energy it takes to hold onto it.

And now… imagine loosening your grip.

You don’t have to throw it away.
You’re just holding it more lightly.

See if you can add a touch of kindness…
maybe even a hint of humor.

A soft voice inside that says:

“Of course that happened. I’m human.”

Maybe even:

“This is part of our disease but it’s also part of being alive.”

Take another slow breath in…
and out.

Let the tightness soften just a little.

Let the story become less heavy.

You are allowed to be imperfect.
You are allowed to have a body.
You are allowed to let this go.

When you’re ready, bring your awareness back to the room…
your breath… your body.

And carry with you a little more ease…
a little more compassion…
and maybe even a small smile.

You’re doing just fine.

Whether you have ALD or not, you have moments that you may not want to share on a zoom call. BUT if you have ALD, you have a community who is here for you to hear your story – and laugh with you.

ALD = Shi##y Disease + Great People

Love, Jess