I am Helena the Mermaid, and I have Charcot–Marie–Tooth disease. It’s an extremely rare condition that I was born with, although no one else in my family has it. It did not affect me most my life and I was able to participate in sports, go on hikes, and live a normal happy life. I was not diagnosed till I was 14 years old when I had a spinal fusion for scoliosis. Before then, my high gait and clumsiness was generally brushed off on me just being a clumsy child. Aside from my scoliosis, reflexes, and clumsiness, I was mostly unaffected by my CMT. When I reached my 20s, I fell in love, got married, and had a baby.
Unfortunately, the pregnancy caused my CMT to drastically progress. After having my baby I became very imbalanced. I could still walk short distances, but now required a wheelchair for getting around. I was worried I would lose my strength and began physical therapy and workouts in the water. I found mermaiding during this time. I needed a Halloween costume that didn’t require much walking because of my balance, and mermaids don’t walk. When I told my physical therapist my idea, she mentioned swimming as a mermaid (just a monofin at first, no tails till later) for therapy too and BAM my career was born!
Despite my working out, my disease progressed and walking became harder and harder while my swimming ability stayed consistent. That is until the start of the year when I caught a bad flu and bronchitis and my body did not handle it well. Now when I’m in the water I find I do not have the strength I need to properly kick and I panic. Therefore, I had to retire as a “swim mermaid” for safety reasons. It was very upsetting to lose something that made me so happy and feel so beautiful. It upset me so much that I became depressed.
I announced my retirement to my community and fans, but the response I received made me see how much of a positive influence I was and still can be. Both the mermaid community and disability community thought I should keep being a positive and magical influence and help bring more awareness to CMT and disabilities. I still do dry events, including charity events for children with disabilities, and am currently traveling around the UK spreading awareness and education through the magic of mermaids.
I try to be a positive influence to others in wheelchairs or with disabilities, and hope I can share beauty and magic with those who need it most. I now have a magical life and have made friends with performers in many countries. From other mermaids, to fire artists, to belly dancers, I have a whole group of new spectacular friends who I love to work with and visit. I can be found on Facebook, Instagram, and twitter under my name Helena the Mermaid.
Having met you at the CMT conference in Maryland, my life is better. You are so wonderful and not because I have loved mermaids all of my life. You are truly an inspiration for all people. Thank you for being you.