12/17/2024
30 has been the hardest year of my life but also one I'm most proud of.
30 was the year I:
• Saved my body’s ability to move, avoiding paralysis, by continuing to fight for answers, even after being diagnosed with Endometriosis, Ehlers Danlos, MCAS and Dysautonomia/POTS last year (after 15+ years of reporting symptoms that were red flags all along that worsened over time since these diagnoses are progressive). I had Endometriosis excision surgery last May and Tethered Cord surgery this May. This year I survived spinal cord surgery for a progressive condition (tethered cord) that had gone undiagnosed for 30 years which caused permanent irreversible spinal cord damage and could have paralyzed me if left untreated. These conditions need earlier screening and treatment intervention to prevent irreversible damage that occurs by delayed diagnosis.
• Took back my power by claiming my story—contributing to groundbreaking research, raising awareness for dynamic disabilities, and creating initiatives to improve access to care and early diagnosis/intervention for those with Endometriosis, Ehlers-Danlos Syndrome, Dysautonomia/POTS, Tethered Cord. Spent countless hours navigating insurance battles & appointments, while learning to live with my incurable (meaning lifelong) progressive conditions and dynamic disabilities (we need better research, funding, education, and for treatments to improve). Continue to be incredibly grateful for my providers, surgeons, physical therapists and pelvic floor PT’s who fight alongside me.
• Experienced immense joy with loved ones, family, and friends. It means the world to have people who continue to include me and understand if I can't make it and continue to invite me. I’m so grateful for the check-ins, support, and laughter along the way. Couldn't have made it through without my people, I love you all.
It was also the year I faced whispers of pity when all I wanted was to be celebrated. I encountered some judgment, dismissal, and misunderstanding. But in those moments, I reminded myself of something powerful: my worth doesn’t depend on others perceptions. My voice matters. My experience matters. And sharing my story is not just about me—it’s about disrupting the systems and socialized stigmas that perpetuate the oppression of disabled and chronically ill people. This past year taught me a lot about the subtle stigmas that exist around disability and chronic illness—often unintentionally. My hope in sharing this is to spark reflection, not blame. I’ve been lucky to have incredible support from loved ones. I’ve also realized how much more awareness is needed in our society. This is about my journey to own my story and help others do the same. The support from people and love that I’ve received still shines the brightest through it all, very grateful for the people in my life.
I’m not grieving the life I thought I’d have; I’m embracing the life I do have—and I’m proud of it. There’s so much joy in my life and accomplishments through this experience.
To anyone navigating chronic illness, medical trauma, dynamic disabilities, or a path that’s different from what we’ve been taught to expect: You’re allowed to grieve the hard parts and still be so proud of yourself. Duality. Be proud of your resilience, of everything you’ve overcome, and of the purpose you bring to your life—even in the toughest moments.
Here’s to 31: to owning my story, celebrating every win (no matter how small), and continuing to live on my own terms—with joy, pride, and purpose.
