My Journey with Chronic Illness and the Healing Power of Music

This is the story of how everything I once knew about myself was stripped away, leaving me to rediscover hope through my music.
Everything Was Taken Away

As a former national champion swimmer in Denmark, I thrived on competition. That drive carried me through every aspect of my life. After moving to California, I became a competitive figure skater in the adult division, a swim coach, a Pilates instructor, a professional singer, a mom, and a wife. I even earned a degree in early childhood development, overcoming both dyslexia and the challenges of learning English as a second language. I was at home in fast-paced environments, always pushing myself to achieve more.

Then, it all came crashing down.

In May 2018, I began to feel unwell, though in hindsight, the signs had likely been there all along. The reality of my situation struck me like a ton of bricks—I could barely eat without feeling nauseous, and my energy vanished. What followed was a grueling, years-long journey through the medical system, seeking answers that seemed impossibly out of reach. By August, I was in a wheelchair, unable to stand or walk for more than a few minutes. The next year brought uncontrollable spasms, and by 2022, I was reliant on a G-J feeding tube for 17 hours a day, just to survive. Everything I once believed about myself crumbled—I could no longer coach, teach, perform, or be there for my family the way I wanted. The weight of it all was almost too much to bear. After years of uncertainty, I was finally diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. While life has settled into a new, diminished normal, I now cherish each “good” day and the blessings that remain. My music has been my lifeline, giving me renewed hope and purpose in a life that once felt lost. Click the button to watch the video and learn more about my journey.

Resources

These links includes a variety of my top resources for patients and families affected by hypermobile Ehlers-Danlos syndrome.

Easterseals

Disability & Community Services

The Ehlers-Danlos Society

Global Organization

StuffThatWorks

Treatments & Crowdsourcing

A Guide to Living with Ehlers-Danlos Syndrome

by Isobel Knight

Disjointed Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome

by Diana Jovin

Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS

by Kevin Muldowney Pt

Music is My Everything

Music has shown me light in the darkness. It has shown me that even in the darkest times, there is light. Living with and trying to diagnose a rare chronic illness has tested me in ways I never imagined, pushing even the strongest parts of my spirit to their limits. There were moments of deep confusion and despair when everything felt lost. I was fortunate to have a loving family and access to good medical care, but even with that support, the weight often felt unbearable. Music became my refuge, offering comfort and an emotional outlet when nothing else could. I honestly don’t know where I would be without it. Perhaps I would have found another path, but it wouldn’t have been as fulfilling or healing as writing songs has been for me.

Words of hope ...

You are not defined by your illness. Your strength, resilience, and courage are what truly define you.

In the midst of uncertainty and pain, remember that every small victory counts. Celebrate each one as a testament to your perseverance.

Your journey may be challenging, but your spirit is unbreakable. Keep pushing forward, one step at a time, and never lose sight of the hope within you.

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