I wrote this on July 15th, 2025 — the day I finally put it all into words for the first time. The timeline. The tests. The diagnosis. The BiPAP that arrived that afternoon and let me breathe, actually breathe, for the first time in weeks. I didn’t know then that Lizzy would arrive in November and rearrange everything we thought we knew about love. I didn’t know the village you’ll read about in the margins of this story would grow into something I still can’t fully describe. I share it now because it’s where this chapter began. And because the people who’ve walked with us deserve to understand what the beginning looked like.
Originally written on July 15, 2025
This has been the most joyful, most painful, most utterly transformative season of my life. All three at once.
Over the last four months, my life shifted in ways I never expected. What began as mild physical discomfort led to a diagnosis that changed everything: ALS. But woven into the heartache is the greatest blessing of my life — my wife Grace is pregnant with our first child. A baby. Due this November. Our miracle.
This is the story of that timeline — from the first signs something was wrong, to a diagnosis that’s still hard to say out loud.
March 2025: The First Signs
I began feeling weak and unusually tired. It was easy to chalk it up to aging, old injuries, or just a rough stretch of life. But then the weakness became specific. My left arm stopped working the way it used to. My right arm followed. I struggled to write. I dropped my phone. Buttoning a shirt became an ordeal. Grace noticed the changes too — especially the weight loss. Over 20 pounds fell off me without a change in diet or routine.
My hands started to tremble. My muscles twitched. Walking got harder. I was in pain — neck, hips, back, legs. I could no longer get out of bed or a chair without help. Something was clearly wrong.
April–May: The Search for Answers
Grace and I began what would become a relentless schedule of appointments. I saw my primary care doctor, a neurosurgeon, and neurologists. I underwent MRIs, blood tests, X-rays, urine analysis. Every week brought a new scan, a new test, a new “maybe.”
We ruled out Parkinson’s. Ruled out MS. Ruled out multiple myeloma. But nothing explained all the symptoms. Doctors began to whisper about ALS.
On one level, it made sense. On another, I didn’t want to believe it.
June 17: Saying It Out Loud
By mid-June, I’d had an EMG and nerve conduction study. I’ll be honest: it was brutal. They shocked my arms and legs, stuck needles deep into my muscles to test responses. The results weren’t encouraging — abnormal motor function, though sensory nerves remained intact. That day, one of the neurologists leaned in: “It’s looking like ALS.”
I shared the news with family and close friends. It was the first time I put those letters in a sentence about myself. ALS. A disease with no cure. A disease that steals your muscles but, cruelly, leaves your mind intact.
“Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
— Joshua 1:9
And yet… through it all, one thing remained constant: Grace and the baby were healthy. That singular truth kept me grounded. No matter what was happening to my body, life — new, radiant, and full of possibility — was growing within her.
June 22–26: Building a Care Team
Appointments escalated. I began pulmonary function testing, which came back abnormal. Given my prior lung scarring, this wasn’t surprising, but it confirmed what we feared: my breathing muscles were weakening. I started medications — one specifically for ALS, another for the muscle twitching. We also scheduled a second opinion with Dr. Senda Ajroud-Driss at Northwestern.
On June 27, we met with the full ALS care team at RUSH. The verdict was clear: we had ruled out everything else. The diagnosis was ALS.
But we also walked away with something else — a game plan. Diet. Therapy. Pulmonary support. A social worker to help navigate equipment and insurance. Grace and I began to breathe again — not easily, but with purpose.
June 28–30: A Mirror and a Mission
That weekend, our friends Joe and Nancy came to visit. Joe brought a camera. What followed was part documentary, part love letter — filmed for our baby to one day see, for a moment when I might not be there to say it myself. I thought of the movie My Life often during those days. The question it keeps asking: what do you leave behind?
I told Joe: “I want this child to know how much I loved their mom. And that I was a good man who fought like hell to stay present.”
That same weekend, I wrote to my cousin: “I don’t live in the space of ‘why me’ or ‘woe is me.’ That space questions God’s plan, and I trust His plan completely. I’m not a victim. I’m a CREATOR OF MY DESTINY.”
I meant it.
July 9: The Second Opinion
We met Dr. Driss at Northwestern. She confirmed the diagnosis and ordered a spinal tap just to be thorough. We decided to transfer my care there — more resources, clinical trials, and a compassionate, expert team that gave us hope.
We also officially connected with the Les Turner Foundation, whose support for ALS patients is unmatched. There’s still no cure, but there are people who care deeply — and that matters more than I can describe.
July 15: The Crash
The last few days have been among the scariest. I could barely breathe. My oxygen dipped to 92 — just above the “admit to ER” line. My brain filled with CO₂. I slurred speech. Made no sense. Grace fought our insurance company for two weeks to get a BiPAP machine. They didn’t move until she raised hell.
Three nights ago, our AC broke. I slept in a humid haze, gasping for air. We didn’t go to the ER — something I now regret.
This morning, our friends Susan and Scott drove us to the hospital while Grace finalized the delivery of the BiPAP. They cooked, cleaned, stayed by our side. I finally got to use the machine this afternoon — and for the first time in weeks, I rested.
Turns out, I hadn’t really been breathing. Not properly. Not deeply. And I hadn’t realized how exhausted I truly was.
What Now?
We are stable. Exhausted, but stable. I am now hooked up to a BiPAP at night. I go to therapy weekly. I eat 80–100 grams of protein daily. I’m down to a basic wheelchair for distance. An electric one will come later.
But I’m not done. Not even close.
I still believe in healing. I still believe in God’s perfect plan. I still believe this child — ours — is arriving in November for a reason. That Grace and I were brought together not only for love, but for this moment of profound transformation. This test, this storm, this battle.
I’m still writing. Still fighting. Still loving. And I still have more chapters to write.
To everyone who has called, texted, visited, prayed, cooked, or simply held space for us: thank you.
“Courage is grace under pressure.”
— Ernest Hemingway
To Grace: you are the greatest warrior and gentlest soul I’ve ever known.
To our child: you are the reason I keep breathing.
We are tired. But we are standing. With your love — and God’s grace — we will keep going.
If you’d like to support us, we ask for three simple prayers. That Grace and the baby remain healthy and joyful. That we find unexpected healing and slowing of this disease. And that we be surrounded by love, wisdom, and the right care — every step of the way.
We feel your love. And we need it now more than ever.
With strength and faith,
Cecil ❤️
GO ADVENTURE ◆ GO TRAVEL ◆ GO LIVE
ALWAYS BE EPIC
Secret of My SucCecil 