Still Me: A Father’s Love Beyond ALS

My darling Lizzy,
Papa wrote this on June 29, 2026, after reading that Chris Johnson, one of the fastest men to ever touch a football field, shared with the world that he has ALS. You are still so little right now, living your life with mummy loving you with every ounce of herself, while papa watches you from this chair, behind this mask, asking God for more time. I want you to know this: life can change in ways nobody sees coming. Bodies can fail. Plans can break. But who you are — your soul, your love, your faith, your fire — that can remain. When the world sees weakness, I want you to look deeper. I want you to see the person still there. I love you my beautiful girl!

Originally written on June 29, 2026 Chicago, Illinois

“Wait for the Lord; be strong and take heart and wait for the Lord.” — Psalm 27:14

I read the news today about Chris Johnson.

CJ2K. The man who ran a 4.24 forty. The man who made NFL defenders look like they were standing still. The man who rushed for 2,006 yards in one season. The man whose entire identity, at least to the outside world, was speed. Explosiveness. Acceleration. Gone before you could catch him.

And now ALS has entered his story.

ALS. Three letters that do not care how fast you were. Three letters that do not care how strong you were. Three letters that do not care if you were a Pro Bowler, a father, a husband, a friend, a son, a man with plans, a man with memories, a man with a body that once did extraordinary things.

ALS does not ask permission. It just takes. And takes. And takes.

Chris Johnson said something I haven’t been able to shake. He said he wants people to know he is still him. That ALS has changed what his body can do, but it has not changed who he is.

I understand that sentence in my bones. Actually, deeper than my bones. Because my bones are not doing much these days. But my soul heard him. My heart heard him. The part of me ALS has not reached heard him.

Still me. That may be the whole post. This is what I have been saying ever since I was diagnosed.

I was never Chris Johnson fast. Let’s be honest, nobody was Chris Johnson fast. I did not run away from NFL linebackers. After one week of two-a-days in eighth grade, I told my coach that I was quitting football. Without missing a beat, he said “son, I think it would be best for everyone if you quit football especially you.” Back to Chris… I did not have a nickname like CJ2K. I did not make SportsCenter highlights by turning the corner and disappearing down the sideline. But I knew my body. I trusted my body. I walked Chicago. I hiked the Marin Headlands with Taylor. I carried bags. I climbed stairs. I traveled across India in a rickshaw with DaveRisner and Derek. I hugged strangers. Actually DaveRisner hugged strangers. I watched him. I held Grace. I drove. I worked. I laughed loudly. I told stories with my whole body — hands moving, face animated, voice rising, eyes wide. ALL IN. That was me. That is still me. But ALS has made it harder for the world to see.

Chris Johnson’s first symptom was weakness in his right hand. Mine began differently, but with the same betrayal. Weakness. Weight loss. Tremors. Twitching. Stairs becoming mountains. Fine motor skills slipping. My left side changing. My body sending signals I did not yet know how to read. Then doctors. Tests. MRIs. EMGs. Second opinions. Words you never want attached to your name. ALS suspected. May 2025. ALS diagnosed, June 2025. ALS confirmed. July 2025.

A year ago, I was still trying to understand what was happening. Now I cannot move from the neck down. I cannot breathe without the ventilator. I cannot cough the way I used to. I cannot sneeze the way I used to. I cannot laugh without paying attention to air. I cannot pick up my daughter.

That last one hurts the most.

Chris Johnson talked about picking up his seven-year-old daughter so she could make a wish over her birthday cake, and then, a year later, not being able to do that. I read that line and felt my chest tighten. Because Lizzy, my beautiful girl, papa has never been able to pick you up the way I dreamed I would. That is one of the cruelest parts of this disease. I dreamed of holding you the way fathers hold daughters. I dreamed of lifting you in the air. I dreamed of carrying you from room to room. I dreamed of you falling asleep on my chest because I placed you there.

Instead, mummy places you on me. Grace gently positions you against my body. She adjusts your head. She watches the ventilator tube. She makes sure you are safe. She makes sure I am also safe and that you do not pull up my mask. She gives me fatherhood with her hands. That is love. That is marriage. That is grace. Grace by name. Grace by nature.

Chris has Brittany. I have Grace. He said his wife has not left his side. I know what that looks like. I know what it means when your wife becomes your advocate, nurse, protector, translator, memory, muscle, courage, and home. I know what it means when love is no longer only romance. It is suction. It is masks. It is straps. It is medication. It is repositioning. It is fighting insurance. It is watching the monitor. It is hearing a cough that does not sound right. It is sleeping lightly. It is waking constantly. It is saying, “I’ve got you,” even when she must be exhausted beyond words.

People call ALS a disease. That is true. But ALS is also an exposure. It exposes what your body can no longer do. It exposes who shows up. It exposes what love actually means. It exposes faith. It exposes fear. It exposes the difference between sympathy and presence. It exposes the people who can sit in the room when there are no perfect words.

Chris Johnson was known for speed. I was known for energy. He ran past people. I talked to people. He made defenders miss. I tried to make people feel heard. Different gifts. Same theft. ALS came for his movement. ALS came for mine. ALS came for his voice. ALS came for mine. ALS came for his ability to hold his child. ALS came for mine before I ever had the chance.

And yet.
AND YET.

Still me. Still Chris. Still Cecil. Still papa. Still husband. Still father. Still friend. Still believer. Still coach. Still storyteller. Still stubborn. Still grateful. Still afraid sometimes. Still laughing sometimes. Still praying all the time.

Still here. That matters.

“I am not afraid of storms, for I am learning how to sail my ship.” — Louisa May Alcott

This detail hit me almost as hard as the diagnosis itself: Chris Johnson’s former Titans teammate, Tim Shaw, has been living with ALS since 2014 — twelve years now. Twelve years in this fight. And it turns out my childhood best friend Steve Cassell’s nephew Tim is close with Tim Shaw and his father. What a small world.

That’s not the only one. Last weekend, Grace and I attended an ALS fundraiser hosted by the Packard Center at the Chicago Club with Steve and his wife Jenn. That night I met Chicago Bears legends and HOFs Jimbo Covert and Richard Dent, two men I watched on television as a boy, men I never imagined I’d stand in front of as a grown man in this chair. What stayed with me wasn’t anything about football. It was how kind they were, how present, how unhurried with everyone in that room. When I mentioned that Grace and I are dear friends with Steve Wallace, who played for the 49ers against both of them back in the day, Richard Dent lit up — genuine recognition, genuine warmth, the kind you can’t fake. Two men I’d never met, fighting wars I know intimately, already woven into my life through people I love before I even knew it. Maybe that’s the point. Nobody fights this thing as alone as it feels in the dark at 3 a.m. The threads connect whether you can see them yet or not.

Both Jim and Richard had a dear friend and teammate Steve McMichael pass away to this terrible disease. Jim Covert sits on the board of governors for the Packard Center. They do incredible work for ALS research. They help people like me and Chris Johnson.

In a world obsessed with what bodies can produce, ALS forces a brutal question: Who are you when your body can no longer perform? Who are you when you cannot run? Who are you when you cannot walk? Who are you when you cannot speak? Who are you when someone has to feed you, bathe you, move you, scratch your face, adjust your mask, wipe your tears, place your baby on your chest?

The answer is either terrifying or holy. Maybe both.

Because the world teaches us to build identity on ability. Speed. Strength. Work. Money. Movement. Productivity. Control. But God never loved me because I could walk. Grace never loved me because I could lift. Lizzy does not love me because I can hold her. My friends do not love me because I can meet them at a bar, hug them standing up, or tell a story without a machine helping me breathe.

They love me. Me. Not the body. The person. The soul. The heart. The history. The laugh. The faith. The fight. The weird jokes. The ALL CAPS. The long stories that somehow get longer. The man who still believes:

“Everything is possible for one who believes.” — Mark 9:23

I do not pretend that belief makes this easy. It does not. Faith is not denial. Faith is not pretending ALS is not brutal. Faith is not saying, “Everything happens for a reason,” when sometimes the reason is hidden behind tears, machines, and silence.

Faith is waking up with a ventilator on your face and saying: Lord, help me today. Help Grace today. Protect Lizzy today. Give me courage today. Give me one more memory today. One more smile. One more kiss. One more moment where my daughter looks at me and knows papa is still in here.

Chris Johnson sharing his story matters because famous people can make invisible suffering visible. But what moved me most was not the football. Not the stats. Not the nickname. Not the 2,006-yard season. What moved me was the father. The husband. The man saying: I am still me.

That is the message every ALS patient wants the world to understand. Do not talk around us. Do not talk over us. Do not assume silence means absence. Do not assume paralysis means emptiness. Do not assume the machine is the person. Do not assume the eyes are all that is left. The eyes may be the doorway. But there is a whole world inside. Memories. Dreams. Regrets. Prayers. Jokes. Love. Desire. Anger. Hope.

“And I don’t want the world to see me
‘Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am” – Iris, by the Goo Goo Dolls

The person is still there. I am still there.

When people visit me now, I know it can be hard. The ventilator is loud. The mask is visible. My body does not move. My head may lean. My hands may be swollen. My legs may be cold. My voice may not come easily. There may be pauses. There may be discomfort. There may be fear in the room. I understand. But I want people to push past that first moment. Look at my eyes. Talk to me. Tell me the story. Make the joke. Say the thing. Bring the baby over. Ask about work. Ask about Grace. Ask about Lizzy. Ask about the 49ers. Ask about QuestionPro. Ask about India. Ask about faith. Ask about the Rickshaw Run. Ask about anything other than only ALS. Don’t be afraid to ask about ALS also. That is the type of family I have. That is the type of friends I have. They are not afraid to ask so they ask.

Because ALS is part of my life. It is not my whole life. That is what Chris Johnson reminded me today. He is not only a diagnosis. He is not only a former running back with ALS. He is Chris. A husband. A father. A man fighting for more time. A man trying to make memories. A man trying to help research. A man trying to tell the world what this disease does before it reaches another family that never saw it coming.

And I am Cecil. A husband. A father. A man fighting for more time. A man trying to make memories. A man trying to use whatever voice I have left — typed, spoken, assisted, prayed — to say something true.

ALS is a thief. But it is not God. ALS is powerful. But it is not love. ALS has taken much from me. But it has not taken Grace. It has not taken Lizzy. It has not taken my family. It has not taken my friends. It has not taken my faith. It has not taken my gratitude. It has not taken my ability to notice beauty from six windows along a brick wall at our old apartment with 40 foot ceilings. It has not taken my belief that even now, especially now, life is worth living fully.

Not perfectly. Not easily. Fully.

“Go confidently in the direction of your dreams. Live the life you have imagined.” — Henry David Thoreau

Chris Johnson once outran everyone. Now he is in a different race. So am I. This race is slower. Harder. Crueler. There are no end zones. No cheering stadiums. No fantasy points. No highlight reels. Just daily courage. Daily surrender. Daily love. Daily breath. Daily faith. Daily fight.

And maybe that is the deeper kind of greatness. Not the kind measured in yards. The kind measured in mornings you choose to keep going. The kind measured in a wife who stays. The kind measured in children who give you a reason. The kind measured in friends who still show up. The kind measured in eyes that still shine when the body cannot move.

The kind measured in saying:

I am still me. I am still here. I still believe.