The Floor Below the Bed

Every morning in New Jersey started the same way. I rolled out of bed onto the floor, army crawled to the shower, and turned the water as hot as I could stand just to loosen the muscles around my hip enough to make it to the NJ Transit train into the city. I was munching ibuprofen like Pez candies. Not occasionally. Daily. For years.

I have cerebral palsy (CP). I was diagnosed around age two. CP affects the part of the brain that controls muscle movement. It is the most common lifelong motor disability in the world. Approximately 18 million people are living with it right now. Over 11 million of them are adults.

Many people hear "cerebral palsy" and picture a child. But children with CP grow up. And when they do, the medical system that once surrounded them largely disappears.

What doesn't disappear is the pain.

A 2024 University of Michigan study examined over 41,000 Medicare beneficiaries with CP. Ninety percent of adults with cerebral palsy have a documented pain history. Seventy-four percent carry multiple pain diagnoses from different origins. Lower back, joints, gut, chronic headaches. Layered on top of each other. Nearly half live with more than one type of pain simultaneously.

I wasn't an outlier. I was the norm. I just didn't know it yet.

Before 2013, I saw a half dozen "specialists." Every one of them told me there was nothing they could do. One, a chief of orthopedics, looked at me and said the best he could offer was to wait. Wait until my pain was so unbearable that I could no longer sleep, and then he would fuse my hip and put me in a wheelchair.

I fired that guy. And I kept going.

But here is what I want you to understand. I kept going because something in me refused to stop. Not everyone has that. Not everyone should have to. The first systematic review ever conducted on pain management in adults with CP, published in 2025, concluded that there is essentially no evidence base for how to effectively treat our pain. Think about that. Eighteen million people. The most common motor disability on the planet. And the medical literature on managing adult pain is nearly empty.

The silence isn't because we aren't hurting. It's because sometimes the system wasn't designed to listen.

During a routine appointment, I finally admitted to my doctor that I was avoiding escalators because I felt too physically unstable to use them. He handed me a business card for an orthopedic surgeon. I put it in my pocket and thought, great, another doctor who will do nothing.

I was wrong.

Dr. Harwin looked at me and said, "You're pretty banged up, but I can fix you. Usually my surgeries take 45 minutes. With you, I'm going to need a full day in the OR. Eight hours. Let me check. My next open day is July 16th." This was April.

He gave me a gift I never thought I would receive. A hip without pain.

Now, what I do with that gift is on me. And part of what I'm doing with it is writing this.

Because the gift wasn't just a new hip. It was proof. Proof that the right doctor, with the right expertise and the right willingness to actually look at a grown adult with CP and say "I can fix you," that changes a life. The problem is that finding that doctor required me to fire six others first. It required years of being told nothing could be done by people who simply didn't know how or didn't care to learn.

I still have lower back pain from spasticity. I have assembled a team I trust to help me thrive, and I have had to fire a lot of doctors and physical therapists to get there. Quality matters. Settling doesn't.

Dr. Edward Hurvitz, a co-author on the Michigan study, put it simply. Accurate identification of the pain type and source is critical for proper treatment. The research is finally catching up. But for millions of adults living with CP right now, "catching up" isn't fast enough.

So here is what I am asking.

If you are an adult living with CP. Your pain is real. It is documented. It is not in your head, and it is not something you simply have to endure. If your doctor tells you nothing can be done, that is information about your doctor, not about you. Fire that doctor. Find the next one. You deserve a Dr. Harwin.

But I also know that walking into a doctor's office and translating years of pain into the right words, the words that get a physician to actually listen, is its own battle. So over the weekend, I built something for you: the CP Pain Translator. It is a free tool that helps you organize what you are feeling, put language around it, and walk into that appointment ready. Use it. Empower yourself with the information. And then go meet with your doctor.

If you don't have a doctor, or you have fired your last one and don't know where to turn next, reach out to me. I will help you find one.

If you are a physician. Look at the adult in front of you, not the childhood diagnosis behind them. CP doesn't freeze at age 18. The pain evolves, compounds, and layers. The Michigan research gives you a framework. Ninety percent of your adult patients with CP are in pain. Start there.

If you love someone with CP. Believe them when they tell you it hurts. Advocate with them, not for them. Help them find the team that will actually fight for their quality of life, and help them walk away from the ones that won't. And share the CP Pain Translator with them. Sometimes the most powerful thing you can do is hand someone a tool and say, "This might help you be heard."

I crawled across that floor in New Jersey for years. I don't crawl anymore. Not because CP got easier. Because I refused to accept that the best the world could offer me was a wheelchair and a fused hip.

Eighteen million people deserve better than what I was offered. Let's build that.

All the best - Bobby

Dr. Harwin & Me. Eight Years After Surgery