HELENA, based in Virginia, is a professional mermaid with a unique story. She has a progressive condition called Charcot-Marie-Tooth disease (CMT), which causes damage to her nerves and has, over time, resulted in her losing her ability to walk. When she was first diagnosed at the age of 14, Helena says she had "never even heard of it" and "didn't know anyone with CMT at all - I felt pretty alone for a while". When she then lost her ability to walk around 10 years ago, Helena remembers going through a "grieving period", having previously been very physically active. As Helena struggled to adapt to the effects of her life-changing condition, a physiotherapist introduced her to the world of mermaiding, pointing out that swimming was a great way of staying active. Helena immediately dove in and found a new sense of freedom in the underwater world: "I really enjoyed being a mermaid and the way people reacted to me as a mermaid - it was about me and not just about my wheelchair." Helena The Mermaid was born. Since she embarked on her new career, Helena's husband of 11 years, Darren, has been a constant source of support - travelling to fairs and festivals with her, helping her get in and out of her mermaid tail and shooting photos for her social media. He told Truly: "I love when she has photoshoots because it's an opportunity for her to spread awareness and also a chance for the world to see how beautiful she is." But Helena has received her fair share of negativity too - online she has had people telling her to "just stand up" and, in person, a nurse questioned why Darren married her and asked if Helena had "tricked him" into marrying her. None of that has deterred Helena though and her business continues to go from strength to strength. She has spent $10,000 so far on mermaid costumes and recently built a magical "lagoon" in her back garden, where she and her mermaid friends create an enchanting world for children to get lost in: "I love the kids when they see me, I can see the lights in their eyes!" When we followed Helena to her latest photoshoot, she told Truly: "Mermaiding has changed my life, it has made me more open, proud of who I am and confident in myself." And whilst Helena knows she will have to retire from mermaiding one day, when her condition eventually makes it too difficult to take to the water, she says she'll "always be a mermaid at heart".
Follow Helena on Instagram:
https://www.instagram.com/helenathemermaid
Follow Helena on Instagram:
https://www.instagram.com/helenathemermaid
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FunTranscript
00:00 My incurable condition turned me into a mermaid.
00:03 I have Chagramarie tooth.
00:05 It's a neurological disorder.
00:07 My feet don't listen to what my brain is telling them to do.
00:11 I can't really feel them, so I'll fall down.
00:13 When you first lose your ability to do things as you were,
00:17 there is a grieving period.
00:20 You've lost who you were before.
00:22 So I became a mermaid.
00:24 I do get judged and criticized.
00:26 I had a nurse tell me one time that she didn't understand
00:31 why my husband married me.
00:33 And I asked if I tricked him into marrying me.
00:36 Today, I have an underwater photo shoot in the tank,
00:45 so I need to look perfect.
00:47 My name is Helena.
00:48 I'm a professional mermaid.
00:51 I do a lot of events, large and small.
00:54 I do everything from birthday parties for little kids
00:58 to festivals and fairs.
01:01 I have probably spent $10,000 on my mermaid outfit.
01:06 My favorite mermaid tail is the one I currently use.
01:10 It's my signature.
01:11 It's shiny.
01:14 I have Chagramarie tooth.
01:16 It's a neurological disorder.
01:18 It affects my nerves.
01:20 My feet don't listen to what my brain is telling them to do.
01:23 I can't really feel them, so I'll fall down.
01:26 I have to majorly stay in my wheelchair because of it.
01:30 The makeup takes me about an hour because of my hands
01:34 sometimes shaking.
01:35 And then getting the tail on could be another hour
01:38 to half hour.
01:40 I was diagnosed at 14 years old.
01:43 I never even heard of it.
01:45 I didn't know anyone with CMT at all.
01:49 I felt pretty alone for a while.
01:52 About 10 years ago, I suddenly stopped being able to walk.
01:57 When you first lose your ability to walk or do things
02:01 as you were, there is a grieving period.
02:05 You've lost who you were before or a part of your body.
02:09 It was hard to adapt at first when I was losing my ability
02:14 to walk because I was very athletic.
02:17 I loved going on runs and hiking.
02:20 But then slowly, I started accepting who I was now.
02:25 And then I became a mermaid in my wheelchair.
02:29 I first got involved in the mermaid community
02:32 a little bit after losing my ability to walk.
02:37 I needed a costume that didn't involve walking,
02:41 so I was like mermaids.
02:42 And then I really enjoyed being a mermaid
02:45 and the way people reacted to me as a mermaid.
02:48 It was about me and not just about my wheelchair.
02:52 I could still participate and do all the things
02:55 everyone else was doing.
02:57 I could make it my own thing and work the way I wanted to.
03:02 And it's covered in glitter, so.
03:05 This one's the one that goes with Travel Dose for Park
03:07 Kit Benson.
03:08 Friends and family, they all support me or help
03:11 me do it and join me.
03:13 My name is Darren.
03:15 Helena is my wife.
03:16 We've been married for 11 years.
03:18 My name is Katya.
03:19 I am also a mermaid.
03:20 I've been a friend of Helena's for several years.
03:23 She's one of my besties.
03:24 Changing a mermaid tail is very difficult. It's a lot of work.
03:28 It's very hot.
03:29 You can't really move or bend or anything in there.
03:32 But I love the way it makes me feel.
03:36 I'm beautiful, and I love the kids when they see me.
03:39 I can see the lights in their eyes.
03:42 The thing I'm most proud of in my journey
03:45 is the way I found to include my disability in my mermaiding
03:50 with decorating my wheelchair with, like, giant seashells
03:53 and performing in it.
03:56 It's so cold.
03:58 I made this grotto upgrade during the pandemic
04:01 to look more like an enchanted grotto,
04:04 or a lagoon is what we call it.
04:06 My mermaid friends do like to join me.
04:08 They'll come.
04:09 They'll play.
04:10 We sit in there, and we'll play, like, catch with the kids
04:14 and have, like, an interactive mermaid playtime
04:18 at festivals and fairs.
04:19 And we wanted to make it magical-looking.
04:23 I do get judged and criticized online for being a mermaid
04:28 or for the wheelchair.
04:30 I'd get a lot of people making fun of me
04:33 and telling me to just stand up and stuff like that.
04:36 Sometimes I would, on TikTok, just make a little video
04:40 and make fun of it.
04:41 I think there are a lot of misconceptions for people
04:45 that are disabled, even from doctors.
04:48 I had a nurse tell me one time that she didn't understand
04:52 why my husband married me and asked if I
04:56 tricked him into marrying me.
04:59 A lot of people sometimes approach me and say
05:02 they'll pray for me or that I inspire them when I'm just
05:05 buying a carton of milk.
05:07 That can be a little awkward for me sometimes
05:10 when I'm just existing.
05:12 Today, I'm going to my mermaid photo shoot.
05:18 I love when she has photo shoots because it's an opportunity
05:20 for her to spread the awareness of her CMT
05:24 and mermaiding in general.
05:25 Also, a chance for the world to see how beautiful she is.
05:27 [LAUGHS]
05:29 This side is not rolled.
05:30 I think that's what's stuck.
05:31 She's just an amazing person.
05:33 She's witty, and she's amazingly considerate and compassionate.
05:37 I like working with her because she's also
05:38 a consummate professional.
05:41 This is the Cirque de Siren pod.
05:43 A tank is called Frigate.
05:45 It's 1,000 gallons.
05:47 I will use the photos for social media.
05:51 I'm very excited to be shooting in the tank today.
05:55 Mermaiding has changed my life.
05:57 It has made me more open, proud of who I am,
06:01 and more confident in myself.
06:04 Yes!
06:05 Oh, so pretty.
06:06 Other people who are disabled but are too scared to do this,
06:09 might be intimidated by the big professional mermaids
06:13 swimming around doing things.
06:15 I would tell them to mermaid in their own way
06:19 and their own styles, and not to compare yourself to other people.
06:24 Oh, we got a shot!
06:25 We got a shot!
06:26 Nice!
06:27 Photo shoot was really good.
06:29 We had lots of fun.
06:30 I think we got some really good photos.
06:33 Being a mermaid makes me feel happy.
06:36 I think I will retire from mermaiding
06:39 when it becomes too much for my disability.
06:42 But I'll always be a mermaid at heart, no matter what.
06:46 [MUSIC FADES OUT]
06:49 [MUSIC FADES OUT]
06:52 [MUSIC FADES OUT]
06:55 [BLANK_AUDIO]