Tag Archives: poop

A Shi##y Call

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Most of the time …

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

ALD Stinks

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Let’s just say it out loud.

ALD stinks.

Not just in the big, life-altering, soul-stretching ways, but also in the very real, very human, very messy, very smelly, very unglamorous ways.

Yes… I’m talking about poop.

If you love someone with ALD — or live with it yourself — you have a poop story. Actually, you probably have many. Stories that make you cringe. The kind you never imagined would become part of your arsenal of cocktail-party stories.

But last month at the ALD Alliance conference, something amazing happened.

At dinner one night, a few of us started sharing our poop stories. The stories continued the next day around the conference and then when we went for drinks and ax throwing (ALD Alliance knows how to plan a fantastic event;-)).

As we shared our stories, instead of embarrassment… there was laughter. Real, deep, can’t-catch-your-breath laughter. The kind that only happens when you’re with people who get it. No explaining. No apologizing. In fact, we were all kind of trying to one up each other.

Telling these stories is not just about telling these stories. Telling these stories allows us to own them. Allows us to stop hiding and appreciate that there should NOT be shame in battling things we can’t control. Finding community that is there to listen and who understands is a gift. AND if we can laugh together, then it’s more than finding glitter in a pile of shit –- it’s proving that we are stronger than our symptoms.

I won’t share any of Jack’s or my personal stories here, but let’s just say that Jack has left gifts at such remarkable places as The Boboli Gardens in Florence and in the parking lot at SPAC following a wonderful Dead and Co show AND I travel everywhere I go with a roll of toilet paper. My family knows when I say the words, “I need to go”, it doesn’t mean let’s make a stop at the rest area five miles ahead. 

As we were trying to come up with the next topic for ALD Connect’s Structured Mental Health call, I thought, let’s dive in and share some poop stories. It may provide people some great advice and treatments AND I know it will also provide us all with a safe space to share AND to laugh together.

Our friends Ken and Christie of ALD No Limits – who each may or not have some stories themselves – are talking about doing a poop episode on their podcast. Can’t wait to hear that one, but for now we will do it a little more privately. The call will not be taped so ALD folks – think of your best I cant’ believe this actually happened story and come join the fun.

The call In the Bowels of ALD is Thursday, April 16th at 7 pm EST. 

Let’s take the shame out of things we can’t control and let’s turn embarrassment into laughter.

I’ve said it before and I’ll say it again — ALD — shitty disease/great people!!!!!!!!!

Love, Jess

AND I know that many of you non-ALD folks have stories of your own … after all, everyone poops. I think the world would be a little better if we all shared that sometimes our bodies have minds of their own.

THIS is (our) ALD

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After writing the sweet birthday story about Jack CLICK HERE IF YOU MISSED IT, I got started on our morning routine. Getting Jack up and out for school takes 2000 steps – even in the new house. There’s laundry and showering and teeth brushing and dressing and breakfast and medication. By the time we’re done with medication, we’re close to the finish line. The last steps are putting on his shoes (Jack wears AFOs so it takes some time) and few minutes on the potty – just in case.

I hadn’t realized that Jack had the last bite of cake in his mouth when I sat him down on the toilet (don’t judge – it’s his birthday). I left the room for a minute to grab some coffee and I heard a loud sneeze. When I walked back into the bathroom, there was chocolate cake EVERYWHERE. All over Jack, the floor, even the freshly painted, super cool and modern, white walls.

At first, there was a bunch of swearing on my part, but it quickly turned to laughter and joking with Jack that if someone hadn’t known what had happened, they might think it was poop. Several Clorox wipes and a new tee-shirt later, Jack and the bathroom were as good as new. I decided that – just in case – I would leave Jack on the toilet for just a few more minutes. The phone rang so I left the room and spent a couple of minutes chatting with Dan about the birthday boy. As I walked back into the bathroom I interrupted Dan by saying, “Holy crap. There’s sh%t everywhere!! Gotta go.”

This time there was poop everywhere. POOP EVERYWHERE!

When I cleaned up for the second round of mess, I can’t say that it was all laughter, but once I was finished, I called Dan back and we all found the humor when I said, “I just cleaned him up again. He still has some stuff on his pants. Not quite sure if it’s poop or cake. The bus just pulled up, so let’s assume that it’s cake.”

Is it poop or is it cake? Let’s assume it’s cake. THAT is real story of (our) ALD.

Love, Jess