Some stories aren’t written—they’re survived. Living with a spinal cord tumor is one of those stories. It’s a daily experience of pain that doesn’t ease up, limbs that refuse to listen, and energy that slips away without warning. And yet, somehow, the work continues. The story continues. The art still demands to be made.
This is my story: a life lived with an intramedullary hemangioblastoma—a rare spinal cord tumor with a complicated future and a very present impact. This isn’t just about medical terms and procedures. It’s about resilience. About still creating, still moving forward, even when every part of you begs for rest.
What Is an Intramedullary Hemangioblastoma?
A hemangioblastoma is a benign but highly vascular tumor. Mine lives within my spinal cord itself—what’s called an intramedullary tumor. This means it’s tangled in with the very nerve fibers that allow my body to function. Removing it or even trying to manage it becomes a high-stakes balancing act between reducing the tumor’s impact and preserving whatever neurological function I have left.
In my case, this condition may be linked to Von Hippel-Lindau (VHL) syndrome, a rare genetic disorder. VHL causes tumors and cysts to develop throughout the body, often in the brain, spinal cord, kidneys, and eyes. It’s something I’m being evaluated for—because a diagnosis like this changes everything. It’s not just about treatment anymore—it’s about lifelong surveillance, potential hereditary risks, and confronting an uncertain path ahead.
Daily Life with the Tumor
My symptoms are constant companions. They come and go in waves, but they never truly leave:
- Weakness in my legs, especially while walking. I have to think about every step.
- Numbness in my left hand, which makes basic tasks like typing, gripping, or handling film gear a frustrating challenge.
- Severe, persistent pain, often radiating through my spine and limbs, sometimes dull and sometimes shockingly sharp.
These aren’t things you can ignore or “push through.” They shape every decision, every action, every day.
Spinal Cord Fusion and What Came After
I’ve undergone spinal fusion surgery, meant to stabilize and decompress my spine. It helped prevent further neurological decline, but it also changed how my body moves. Spinal fusion is rigid by design. It stops instability but also removes mobility—and it’s a strange thing to adjust to.
Even after surgery, the symptoms remained. That’s the difficult part: when your “solution” is only partial, you learn quickly how to make peace with the pieces.
Using a Spinal Cord Stimulator to Manage Pain
To gain some relief from the pain, I had a Boston Scientific spinal cord stimulator implanted. This small device sends electrical pulses near the spinal cord to help block pain signals from reaching the brain.
It doesn’t erase the pain—but it often transforms it into something more tolerable. Less chaotic. More distant. That alone is a small miracle.
Sometimes the stimulator works brilliantly. Other days, the pain cuts right through it. But like any tool in a chronic illness toolbox, it’s a piece of the puzzle—and some days, it helps me keep moving.
Still Creating—One Scene at a Time
Despite everything—despite the pain, the fatigue, the numb hand, and the physical limitations—I’m still creating. Still writing. Still building a film.
On some days, I storyboard with my right hand while the left one feels like it’s floating through fog. On others, I dictate ideas into software because I can’t sit at the desk. But I’m doing it. Slowly. Patiently. Sometimes from bed. But I’m doing it.
The film I’m working on, Lovelock, has taken on deeper meaning. It’s not just a project. It’s proof of life. Proof that I’m still here, still contributing, still building something bigger than my diagnosis.
Mental Health in the Middle of It All
The emotional toll of chronic illness is real. And it’s heavy.
- Anxiety before every MRI scan
- Depression from losing old routines and identities
- Grief over the freedom I once had
There are days where it feels like I’m watching the world move forward while I’m stuck in neutral. But on those days, I remind myself: this is still life. Not paused. Not over. Just different. And meaningful in ways I never imagined.
What Helps Me Stay in the Game
These are the things that keep me going. They’re not magic. They’re real, grounded supports:
- Family First – My wife and two sons are everything. Their love, patience, and belief in me have pulled me through the darkest stretches. They’re not just support—they’re oxygen.
- Faith in purpose – I believe in the story I’m telling. In the art I’m making. In the difference it could make.
- Technology – From adaptive filmmaking tools to the stimulator in my spine, tech helps bridge the gap between what I imagine and what I can physically do.
- Community – Friends, collaborators, and fellow creatives who understand what this journey looks like and show up without needing everything to be perfect.
- Movement – Even when walking is difficult, even when pain screams, I try to move. Some motion, any motion—it reminds me I’m still in my body.
- Rest & Ritual – Every day, I watch two movies, usually foreign arthouse films. They recharge me creatively, intellectually, emotionally. They remind me that cinema can be honest, raw, and powerful—even in stillness.
These aren’t luxuries. They’re survival tools.
Looking Ahead: Prognosis and Possibility
Living with an intramedullary hemangioblastoma—especially one possibly linked to VHL—is a marathon without a clear finish line. It’s about managing, adjusting, and hoping. There’s no easy prognosis. No magic pill. But there is life. There is work to be done. There are stories to be told.
And while my spine may falter, my vision hasn’t.
Frequently Asked Questions
What’s an intramedullary spinal tumor?
A tumor that grows inside the spinal cord itself—rare and challenging to treat.
What is a hemangioblastoma?
A benign but highly vascular tumor. It can cause serious symptoms if it impacts nerve pathways.
Is it related to a genetic disorder?
Possibly. Von Hippel-Lindau (VHL) is a genetic condition that causes tumors in multiple organs, including the spine.
Does the spinal cord stimulator help?
Yes—some days more than others. It reduces pain, but doesn’t remove it entirely.
Can you still work with this condition?
Absolutely. But it takes adjustment, patience, and a different kind of strength.
How does filmmaking fit into your life now?
It’s slower. It’s different. But it’s essential. It keeps me connected to who I am.
Final Thoughts: The Scene Isn’t Over
This journey is far from over. The pain continues. The symptoms ebb and flow. But I’m still here. I’m still building something meaningful. Still creating a film. Still raising my sons. Still loving. Still living.
And maybe that’s the most honest ending I can offer: not a resolution, but a continuation.
Because this scene isn’t over yet.
