my story with chronic illness
and how my music saved me
This is the story of how everything was taken away from me, all that I identified as being the essence of who I was, until now where my music has given me a new hope in life.
Everything Was Taken Away
As a former national champion swimmer in my native Denmark I was used to the competitive lifestyle. I applied this attitude to everything I did later in life. Moving to California I became competitive figure skater in the adult division, swim coach, pilates instructor, professional singer, mom and wife. I even got a degree in early childhood development overcoming my dyslexia and English as a second language. I thrived in fast paced environments.
And then it all came crashing down.
What Happened?
In May of 2018 I began to feel sick. Looking back it probably started sooner but wasn't anything I couldn't somehow power through. Then everything crashed down on me like a ton a bricks. I couldn't eat more than a few bites before feeling full and nauseous and my energy level was non-existent. So began my years long journey through the medical system to try and figure out what was happening.
By August of 2018 I was in a wheelchair unable to stand for more than a few minutes or walk more than a few steps. The following year I had uncontrollable full body spasms. By 2022 I couldn't eat or drink more that a few ounces of liquid a day and was put on a G-J feeding tube 17 hours a day which I remain on to this day.
Everything I thought I knew about myself no longer seemed to be true. I couldn't coach swimming, I couldn't teach Pilates, I couldn't perform my singing gigs, I couldn't be there for my family like I wanted to. At times it was too much to bear. The process of getting the proper diagnosis and treatments was long and arduous despite the best efforts of some very talented specialists. But after several long, difficult years I was finally diagnosed with a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS). Things have settled into a much diminished new normal. Now I try to get the most out of each "good" day and appreciate the blessings I do have.