14 Years with Spinal Cord Tumors: Lessons Learned and Living My Best Life

Fourteen years. That’s how long I’ve (knowingly) been living with spinal cord tumors. Fourteen years of MRIs, nerve pain, radiation, spinal taps, trying to explain to people what I have “It’s cancer but it’s not that cancer”, and finally realizing that this is in fact a chronic condition that I will live with for the rest of my life.

But today? I’m doing well. Better than well, actually—my latest MRI and recurrences looked better than it has in years. But more than that, I’m living my life on my own terms and prioritizing what actually matters.

It took me a long time to realize that life isn’t about squeezing myself into someone else’s expectations. When you live with a chronic disease, you get these constant reminders that time is precious. And yet, for years, I kept putting work, obligations, and other people expectations ahead of my own health and happiness in order to “fit in” with all the healthy people. Until one day, I realized my disease has given me the strength to be exactly who I want to be.

So, in honor of 14 years of resilience (and finally learning to set some damn boundaries), here are a few of the biggest lessons I’ve picked up along the way.

1. Your body knows best—listen to It

For years, I ignored the signs. I worked through pain, pushed past exhaustion, and convinced myself that resting was “lazy.” But here’s the thing: when your body is literally sending you warning signals, it’s not optional to listen. It’s survival. Now, I build my life around what works for me—not what a traditional schedule and society says I should be doing.

2. Stability is out, chaos is in 😜

Living with a chronic disease can be chaotic and unpredictable, so I had to learn tools to navigate that. I realized quickly that a “stable” 9-5 career, was actually very UNstable for someone who lived with a chronic disease. Leaving the 9-5 world was the best thing for me, because I now I have ownership over my schedule. I can choose when to teach, when to take off, which projects I want to take on, and which I want to drop at any given moment. Leaving a traditional job didn’t just give me my time back—it gave me myself back. Now, I focus on work that lights me up, in a way that actually fits my life, instead of forcing my life to fit around work.

3. Boundaries are a love language (especially with yourself)

Saying “no” used to feel impossible. I was the people-pleaser who would say “sure!” to things that I knew would drain me, just to avoid disappointing others. But the reality check that came with a chronic disease? No one is going to set boundaries for you. You have to do it yourself. And the more I started honoring my own needs, the more I realized—people who respect you won’t be mad when you say no.

4. Time is the most valuable currency.

Nothing makes you appreciate time like facing a medical condition that reminds you it’s not guaranteed. I don’t want to spend my life waiting for weekends, vacations, or “someday.” I want to actually live—now. That means prioritizing experiences over exhaustion, connection over career climbing, and joy over checking off someone else’s to-do list.

5. You can redefine what success looks like.

For a long time, I thought success meant promotions, productivity, and pushing through. Now? Success is waking up and feeling good in my body. It’s spending time with people I love. It’s having the freedom to move, rest, and work in a way that actually supports my health. It’s choosing myself, every single day.

6. Happiness is a daily practice.

At the end of the day, I’ve learned that happiness isn’t something you wait for—it’s something you create. Whether it’s a slow morning, a deep breath, a glass of wine, or just saying “screw it” and spending the day reading faerie smut, I make space for it. Because life is too short to not soak up every bit of magic it has to offer.

So here’s to 14 years—of learning, unlearning, laughing, adapting, and finally putting myself first. Cheers to wearing your scars like wings, and refusing to live on anyone else’s terms but your own.

With love and magic,

Emily

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