I wrote this in October 2025, and I debated whether to publish it for about five seconds. Then I remembered that shame is the enemy of connection — and that if ALS has taken everything else, it is not taking my sense of humor. So here it is. The unvarnished, unglamorous, occasionally triumphant truth about what going to the bathroom looks like when you have ALS. Volume One. Read it with the people you love. Laugh out loud if you need to. That’s the whole point.
Originally written on October 2025 — Chicago, Illinois
I’m going to be honest — going to the bathroom has become one of the most brutal parts of living with ALS. To call it “traumatic” would be an understatement.
Let’s inject a little laughter into trauma.
Because I’ve lost so much core strength and can no longer walk, every bathroom trip has become a full-on production. It requires choreography, strength training, and a prayer circle.
The Lift
Here’s how it goes. Someone (usually Grace, or one of our saintly friends) has to lift me from my chair. The right way to do it is to squat, get low, grab me by the lower back, keep your chest close to mine — “tip to tip,” as our dear friends Sean and Tammy like to say — and then use your legs and glutes to stand up and pull me close.
There is absolutely no personal space in this maneuver. The love is real — and it’s close.
And if your arms are long enough, the truth is… grabbing my butt actually helps. It centers my weight, gives you leverage, and at this point, modesty is for amateurs.
That’s the right way.
The wrong way — and let’s just say, the more common way — is to lift with your arms and back. That means two things: (1) it hurts me like hell, and (2) there’s a solid chance you’ll lose your grip and my legs will buckle. Cue the panic grab under my arms, near my shoulders — and ouch.
Usually the panic starts with me screaming in pain as my legs buckle, which causes whoever’s helping to panic too. Suddenly, we’re in an involuntary wrestling match. By the end of it, it feels like I’ve been in a bar fight with one of my best friends.
And we haven’t even made it to the toilet yet.
The Walk
When I was still walking, those 25 feet to the bathroom felt like a marathon. Tiny, careful steps, praying I wouldn’t fall. The final boss? The tiny threshold between the hallway and the bathroom — might as well have been Mount Everest.
It was during those walks that I realized I needed the ventilator almost full-time. By the time I reached the bathroom, I was completely out of breath. Even pushing required more energy than I had.
Enter: The Bidet
A few months ago, we bought a bidet — and let me tell you, total game changer. Because I no longer have the use of my arms or hands, cleaning myself after the fact became impossible. So this little miracle of plumbing has become my best friend.
That said, it’s not all smooth sailing. I still have to use my fingers to push the buttons on the bidet remote. I have virtually no grip strength. Picture me balancing the remote on my lap, twisting my wrists just right to press the buttons I can barely press while praying it doesn’t fall to the floor. It’s an Olympic-level event — Bidet Gymnastics, ALS edition.
And that’s if I can actually go. Without core strength, I can’t “push.” I take psyllium husk, drink gallons of water, even down high-polyphenol olive oil like it’s fine wine — but it’s still a battle.
That’s when I started imagining my poop as a big, sticky, hairy brown bear. This bear wants to come out, but as soon as it peeks its head and sees the bowl, it panics and retreats. I’m seriously considering writing a children’s book called The Bear That Wouldn’t Go. Funny, sad, and a little too real.
The Glorious Moment
Then about a month ago, I figured out how to use the bidet as an enema. After 37 minutes of trial and error — picture a man on a mission — something magical happened. That big stinky brown bear finally jumped out… and brought all his little cubs with him. Victory!
Technically, that only worked once. But for that one shining moment, I felt like a champion.
The Great Fall
Of course, nothing with ALS is ever simple. One time towards the end of her second trimester, when I was done, Grace tried to lift me off the toilet. My legs buckled so badly that she couldn’t keep me upright, and I was too weak to help. Grace did the right thing by laying me on the floor. So there I was: butt-naked except for a T-shirt, lying flat on the bathroom floor.
Thank God Sean was in town — he came back from dinner just in time to help get me up.
Grace has always been the best at helping me. She’s strong, capable, and knows exactly how to lift me. For the longest time, she was the only person I felt completely safe with. But by her seventh month of pregnancy, it just became too risky. That day, when my legs gave out, I knew I couldn’t let her do it anymore. I was terrified I might hurt her — or the baby. That was the day Team Grace-and-Cecil retired from the bathroom circuit.
After that, only a few people made the cut — Derek, Steve, Jordan, Dru, Garrett, and later, Joe. They all had the strength, patience, and know-how to get me to the bathroom safely.
And Then… the Miracle
Everything changed two days ago when our buddy Joe and his two boys, Kai and Tragar, came to help for the week. We had just moved into our new place, which has been a huge answer to our prayers — more on that in another post. They took over for Dru and Garrett to help us unpack from last week.
They were an answer to our prayers. Joe has the perfect combo of strength, patience, and dad-energy. He learned how to lift me properly — tip to tip, legs not back — and suddenly, going to the bathroom didn’t feel like a near-death experience anymore.
Then Joe and Kai took it to another level. They drove two hours, round trip, to pick up a sit-to-stand device from another family affected by ALS who wanted to pass it forward. I went deep to catch the pass.
This thing is pure magic. It’s mechanical and electric, safely lifts me from a chair or toilet, gently sets me back down, and best of all — you can literally wheel me from the living room into the bathroom.
And it’s not just for the big jobs! Grace can now get me standing, drop my shorts, and let me pee without fear. Let’s just say I’ve mooned more friends this week than I have in my entire life combined.
This stand has been a total game changer.
Somewhere between the bidet acrobatics, the hairy bear saga, and my newfound tendency to flash half of Chicago, I realized something: I’ve officially thrown dignity out the window.
And that’s okay. Because every time I let go of my pride and let someone help, I’m showing Grace love. I’m taking a burden off her shoulders.
So when I’m sitting in the middle of the living room wearing only a T-shirt while our friends help unpack, well… let’s just say I believe in a lot of things. And one of them is being fully exposed.
Because for the first time in forever, I wasn’t scared. The trauma was gone. The barrier was gone. And when you’ve got ALS and swept upyou finally poop — and pee — in peace? That’s basically HEAVEN ON EARTH.
The Bathroom Chronicles: Volume Two will be much simpler. “And they lived happily ever after — papa, mama, and baby.” ❤️
Secret of My SucCecil 