Episode 51 - With Nola Simon

In this week's episode I'm chatting to Nola Simon who started going grey when she was 7, as a result of Waardenburg Syndrome. Amongst other things, we talk about life at school with a white streak, why things have been different for her daughter, and how she keeps her hair pure white.

Transcript

Happier Grey Podcast with Nola Simon

Helen: Hello and thanks for joining me, Helen Johnson, for the Happier Grey podcast. I'm pro-ageing and love my grey hair, but I know it can be quite intimidating to take the plunge, so each week I'll be chatting to other women who've chosen to embrace the grey in the hope of inspiring and supporting you, whether you already have silver hair, in the process of going grey, or just considering ditching the dye.

Today, I'm joined by Nola Simon, an internationally recognized hybrid remote working futurist and LinkedIn top voice advising organizations on human centric workplace strategies that blend flexibility with operational excellence. Her hair started turning white when she was seven as a result of Waardenburg Syndrome.

Hello, Nola.

Nola: Hello, so happy to be here.

Helen: Well, great to speak to you. And obviously you're a little bit different from most of my other guests who grow grey an awful lot later.

Nola: And actually, that's why I like doing these kind of things, because it's a different perspective on how it informs identity. 

Helen: Going to come back to before you were seven.

Nola: Yes.

Helen: What colour was your hair?

Nola: I was brown.

Helen: Then when you were seven, did you just suddenly overnight start?

Nola: It just started developing a couple of strands at a time. And I actually remember going to the hairdresser, because I'd been plucking them out, and she told me that I had to stop because otherwise I was going to go bald. She's like, do you want white hair or do you want to be bald? So, I chose white hair, but I actually got a lot of pressure, even from the hairdresser herself, dye it.

That pressure started at seven years old.

Helen: And did it go quite quickly from the few strands?

Nola: No, it did not. It gradually widens. If you look at my school picture from year to year to year, you can see the growth of the streak at the front because it was, like a forelock streak. 

Helen: Yep.

Nola: And, it just gradually got wider and wider. Then I started getting another one at the crown of my head, when I was a teenager. It wasn't really until I got pregnant and had my first daughter when I was 32, that it really started accelerating.

Helen: Okay.

Nola: Yeah. So, for the majority of my life, I was dark Brown with a forelock streak.

Helen: You said that even when you were seven, the hairdresser was suggesting that you dye it?

Nola: Oh, every year, every time I would go see her, she wanted to blend it in, do lowlights and all kinds of different things just to disguise it. 

Kids at school called me grandma. That was my nickname at school was grandma. I stood out because of my hair. Waardenburg Syndrome also has pigmentation differences in your skin. My eyes are different colours as well too. One is blue, one is green.

Helen: Were they different colours before you started to go grey?

Nola: I was born with that, yeah.

Helen: Yeah.

Nola: Yeah, exactly. Waardenburg Syndrome actually manifests differently because my, daughter has it as well. One of my daughters has it. One of my daughters doesn't. It's a recessive gene. She was actually born with the forelock streak. 

She has a pigmentation difference right on her forehead. It sort of looks like the Harry Potter scar. And it's actually interesting, how it appears in pop culture because my daughter had, Harry Potter with the scar on the forehead, but also Frozen with the forelock. When Anna gets touched, and her sister freezes her, the front of her hair turns white as well too. 

So, there was a lot more understanding in pop culture for my daughter, because people were like, oh, you're like Anna. And it's like, no. But same sort of thing, right?

Helen: Would you say you felt a little bit bullied when you were at school, because of the colour of your hair?

Nola: Oh yeah, absolutely. Anything that makes you different, right? I love it now because it makes you stand out, but at the same time, in school, anything that makes you stand out makes you a target of bullying. 

Helen: Yeah. And kids can be pretty cruel.

Nola: They can definitely, but adults too as well. The kids learn it from somewhere.

Helen: So did you get reactions from adults when you were younger, as well?

Nola: Oh, yeah, people were horrified that I didn't want to dye my hair at all, because the association with ageing. People are terrified of ageing. 

But I had older parents, my Mom was 41 when she had me in 1971. That was quite progressive. She actually thought I was menopause. Surprise! 

For me, it put a whole different aspect on ageism, because experienced ageism when I was seven. It's actually interesting for me to understand how it manifests now, because people sometimes are shocked when they see my hair. But for me, it's not new, because I've been dealing with it for 40 years, 

Helen: Yeah.

Nola: I'm 53.

Helen: But you think it's different for your daughter, it's a little bit kinder for your daughter maybe?

Nola: it's a little bit kinder for my daughter just because there's different pop culture representation. It'll come up with X Men and the character Storm. But it also, appears in book. A lot of times when people have, the forelock streak, or like a touch of white, or random like streak in your hair that's white, it's associated with evil.

So sometimes you can identify which characters in the books are actually going to be the villains, because if they have the forelock streak or they have any kind of like random grey, it's, you're the villain. 

It's very much associated with witchcraft. Because I have different colours in my skin, a lot of people think I burned myself, right? People ask what it was, I would not have survived Salem because, it was always perceived as that's an entry point for the devil.

I have a lot of, understanding for how it's related to misogyny, and witchcraft, and bullyingk and extreme forces. Thankfully I don't live during those times because well yeah, I would not have survived.

Helen: Do you think it shaped your character as you grew up?

Nola: Oh, absolutely. Yeah. Because I don't care to fit in. I don't like being pushed. I don't like being bullied. I don't like being told what to do. I challenge the status quo on a regular basis. That's honestly what I do with the hyper remote futurism and encouraging people to work in different ways, I’m drawn to the future of work.

I don't fit in. I don't honour the status quo, because I've never been the status quo. I'm not interested in being one of, because I've never been.

Helen: Do you think that's the same for your daughter?

Nola: My daughter is different. It doesn't bother her, but she also didn't get the same sort of pressure that I did. Because people didn't come to her because of me, right?

Helen: Yeah.

Nola: Do you know what I mean? 

Helen: Yeah.

Nola: My Mom had grey hair too, but she also was fine with dyeing it. She grew up and she lived with a hairdresser for a long time. So, she really liked experimenting with hair and doing different things like that. 

With me, I had a negative experience with it. I was never interested in it. I actually do more with my hair now, because we have hard water, right? So, if somebody starts telling me that I'm platinum blonde or I'm such a beautiful blonde, that means that I've got to actually strip my hair. And use purple shampoo, and get that yellow out. 

Because well If you're thinking I'm blonde, that's a problem. I don't want to be blonde. I want to be silver. I want to be white.

Helen: Have you ever dyed it?

Nola: I have not.

Helen: That's actually really cool. Your hair, obviously my listeners can't see, but your hair is literally snow white all over.

Nola: Yeah. Yeah. I've got really good purple shampoo right now. I discovered clarifying shampoo. I’m like, where have you been all my life?

Helen: I was going to ask you about that. So obviously to keep it that colour, a lot of people talk about yellowing.

Nola: Yes.

Helen: What do you do to keep it in such good condition? 

Nola: When it gets really bad, it tends to get more in the summer because I also like to swim. If I'm exposed to sunlight, if I'm exposed to chlorine, it yellows more quickly.

So, at that point, sometimes I have to go to the hairdresser, and they do a mix that they make with conditioner and I think it's hydrogen peroxide. And they strip out the yellow, basically. I do that maybe once or twice a year.

I try to use the clarifying shampoo, and the purple shampoo on a regular basis. 

Helen: Your hair's quite long. 

Nola: That actually is interesting because when I was a kid, I kept my hair really short. I had Pixies a lot of times. I shaved it at the back. I never had long hair. The longest I ever had my hair when I was a kid was actually when I was a teenager. It was maybe like just under my ears.

What I actually find is, it's about standing out. The inclination is, when you're older, you cut your hair. But for me, I always had my hair short. So, my difference is actually going long. And that started during the pandemic, because I couldn't get into a hairdresser.

For years and years and years, my husband had wanted me to grow my hair, because he liked long hair. And I just didn't have the inclination to do it. When I had kids, the kids just hang on to your hair and they grab it. It's just uncomfortable, right? But during the pandemic, it's like, okay, well, we'll try it out.

So, yeah, it's the longest it's ever been. It's almost down to my armpit.

Helen: And do you find it easier to look after like that, or when it was short?

Nola: So, because I kept my hair so short when I was a kid, I’m very bad at actually doing hair. So, like I’m very bad at like putting it up in a braid. And actually, have it look good. I do put it up. Usually, it's just like a messy bun kind of thing.

But when I go to events and whatnot, I let it down. Again, it's about that standing out function, right? 

Helen: Okay.

Nola: So, you walk into a room, and it's very rare that anybody has my specific colour of hair.

Helen: Yeah, because it is so white.

Nola: It is very white. Yeah. And it's interesting because you can blend into different areas. I took a cruise with my dad just before the pandemic started. It was a 3-week cruise through the Panama Canal.

I didn't stand out there because it was Holland America, and the passengers tend to be older, and white hair is not uncommon. How I stood out on that cruise was my knees. They're like, you're so mobile. Your knees are amazing. 

It's very informative in terms of understanding what people value. What their perceptions are of ageing. It's an interesting conversation starter a lot of times.

Helen: Do you think perceptions are changing around ageing? And how acceptable it is?

Nola: I would like to say yes. I still think that it's very deeply, especially for women tied up in misogyny. That whole invisible aspect. 

It's funny because you start to realize it in yourself as well too. I did a podcast interview with Tamsyn Webster and I attended one of her, webinars just before I did that because I was doing research for the podcast. And she has very short hair, and she has a forelock streak, and so many people are complimenting her, and I realized that, I miss that compliment.

It's been so long since I've had a compliment about the shock of white at the front of your hair and the streak, right. People think that that's cool. Cause you know, people on purpose, do that kind of stuff now. And I'm like, I miss that. I'm like, I used to have that. 

I see my daughter get complimented that way too. And I'm like, hey, that used to be me. Like I used to be cool. And I'm like, I'm still cool.

I think a lot of times you have to look in the mirror, and understand how it makes you feel yourself. Because how you show up, and how you adopt it, how you talk about it, how you enjoy it, like what you like about it, really informs other people's experience of who you are, and how that informs your personality, right, and your identity.

I love my hair because I go out in the sun, and I look for the sparkles. Because you can see it, especially with your hair being longer now, right? That's one of my little things that I look for is like little glimmers of hope, and the sparkles in my hair and the sunshine. I'm like, ooh, we’re you get to get to spring and summer. That's the one thing I enjoy about my hair.

Helen: Have you always felt comfortable with the colour of it?

Nola: It's interesting because what I feel uncomfortable with is my eyebrows turning grey.

Helen: Okay. 

Nola: I used to have amazingly dark eyebrows and I’ve noticed recently they've started turning white. I dyed them once and my daughter got really, really upset. And she's like, you dyed your eyebrows! And I'm like, well this is what they used to be.

So, I'm comfortable with the colour of my hair. I'm adapting to the change of colour in my eyebrows. I don't quite know what to do with them, because my face was always framed by my eyebrows, right? 

Helen: Yep.

Nola: And so that's changing, and I find that's a harder adaptation. 

I find that sometimes the conversation about hair and what that means for ageing can be quite confronting for people. So, sometimes it becomes a difficult conversation, because people themselves are uncomfortable in ageing within themselves. 

Helen: Yep.

Nola: And they get defensive. I'm a representation of everything they don't want to admit will ever happen to them. So, I sometimes find that can be uncomfortable because A lot of times people want you to hide. And I'm not inclined to hide. 

I don't take kindly to the whole, you have to become invisible as you age. That's not something that I ever to do.

Helen: So, do you dress in a flamboyant way?

Nola: I like colour. Because, you know, I can't wear white, or oatmeal, or grey. Those types of colours really wash me out, and I just don't look myself. So, I wouldn't necessarily say I dress in a flamboyant way, but I do like colour.

 I'm drawn to red. I think the picture I sent you for the podcast art, I'm wearing my electric blue sweater. 

Helen: Yeah.

Nola: That type of colour, helps me, show up in a really visible way. It really brings out my eyes, it brings out the colour of the hair. So, if you are considering whether colour is flamboyant, then yes.

 I have to be really careful with colour because I can't really do like a whole wardrobe of neutrals. Because, well, that's just gonna make me look like I need to go and have a nap.

Helen: I can't wear black. 

Nola: Oh yeah. Well, I'm wearing black right now, so black and white. I don't seem to have a problem with wearing black, I don't think. But

Helen: Just washes me.

Nola: I do notice there's a group that I'm part of and, a lot of times I just show up however. And one day I was doing something else, and I showed up, and I had a full face of makeup on and the one guy was just like, wow, wow. And I'm like, okay, it's lipstick buddy. Like, it's not that big a deal. 

I do tend to do, like a brighter lipstick and I like blush. That colour helps me balance the fact that my hair really has no colour.

Helen: You mentioned before that you've been featured in a book.

Nola: Yes, actually I brought it here. I’m not sure if you can see it from there. It’s called “You’ve got Quirks” , by Kristin Sherry. I did interview her on my podcast.  

At the back you can actually see. This is a picture of me as a kid that's being drawn a cartoon artist. And there's two pages dedicated to my story. Because Waardenburg is not a very common thing, right.

So, it’s funny, it wasn’t really until I found Instagram, there’s actually a hashtag Waardenburg Syndrome, and it wasn't until I was in my 40s, and I found that that I found other people who look like me. 

I have a cousin in Germany who has Waardenburg Syndrome as well, too. But she's always been the type of person who dyes her hair. My entire life, as far as I know, I've never seen her with white hair. 

She dyes a dark black, and she has brown and blue eyes. So, her eyes are different colours.

Helen: Yep.

Nola: But she doesn't have any of the skin pigmentation differences. But other than her, I'd never seen anybody except my daughter who looked like me. So, it was interesting finding. All of these pictures of these people who had Waardenburg Syndrome because I was like, Oh my God, it's not just me. It's very predominant in Africa. I had no concept of that. 

When Kristin told me she was doing that book, I wanted to actually be part of the book, because I never had a story I could relate to when I was a kid. There was no representation for me. 

So, I thought that that was important, because I'm not the only person. But I might be one of the only people who has a lot of attention, especially on social media. Because I'm a LinkedIn Top Voice, and I do tend to be public. I get interviewed by international media, right? So, how do you use that platform in a way that's representative, right? 

And I, remember what it was like to find those pictures of other people. And to hear those stories, and read those stories, and just be like, cool, like we're not alone, right? 

If I can save one kid from being called grandma when they're seven years old, I've done my job. 

Helen: I'm going to ask you a little question about ageing then.

Nola: Yeah.

Helen: And how you feel about where you're at in the ageing process, and whether you're doing anything to stay healthy as you age?

Nola: Well, I mean, I’m in menopause. So, with menopause I didn’t have a whole lot of other symptoms except itchy ears. And weight gain, right? I do need to lose weight. I'm considering a whole exercise program on how I do that. 

Otherwise, I think that I'm fairly healthy. I didn't qualify for the drug review program at the pharmacy. They're like, you're not taking enough drugs to have us do a review. 

I personally think that my approach to ageing is really informed by my mother. She died, which is 87. She had dementia. For all my life she was a really large lady. When she developed dementia, she started losing weight, incredibly. She actually had dementia induced, anorexia. And so, she ended up weighing, like, 89 pounds.

She was wearing my, kids, size 12 kids clothing. Because all of her clothes were just giant on her, she just couldn't wear anything else. So, for me, it's like, how do you stay strong enough, so that you can take care of yourself, and do personal care? Because, she had to have help to get to the toilet, had to have help to have a shower.

She didn't have a whole lot of upper body strength. And so, that's my focus. I don't want my kids to have to do, what I had to do for my mother. It’s not that I regretted having to do that for my mother. It's just she was dependent in a way that I never want to be, right? So that's where my goal is.

How do you stay healthy enough to make sure that you can remain independent as long as possible?

Helen: Yeah, that's what I want to do as well. My Mum's 89 and she lives on her own, and still do most things. So, you kind of go, yeah, I want to be like that.

Nola: Yeah, exactly. That's right. And so, you know, when I consider what I need to do to be healthier from where I am right now. Weightlifting is something that I want to do. I like walking. I like swimming. That's really what I want to focus on.   

Helen: One last question. 

Nola: Sure.

Helen: If someone came to you and said, I'm thinking about going grey, would you have any advice for them?

Nola: I think I would talk to them about what it really means to them, in terms of identity. Like, what do you think about people, you know? How do you think that it, informs your reputation? Your perception personally, but publicly?

Maybe even like start pulling up pictures of celebrities who've gone grey, the ones that embrace and the ones that don't, what do you feel about those people? What do you think about them? 

Because that's where you start to get into your own bias, about what grey hair really means. And everybody has a different experience with it, because it's how you saw your grandmother age, your mother age. The choices that they made, those all inform your attitude. It's a very personal thing. 

So, I'd encourage them to look inwards to understand for one, what's driving it? A lot of the conversation that happens right now is because of pandemic really kind of forced everybody. Nobody could get out to the hairdresser to get it done. Right? But that's not the case anymore.

So, what's driving it? Like, what's triggering it? Are you just sick of it? You know, the, the whole process? Is it expensive? Do you find that it's not good for your hair? One of my neighbours, she started embracing her grey because she became allergic to hair dry. So, that's where it's like, what's the trigger?

And what are you drawn to? Why did you start dyeing it in the first place? And what are you drawn to, now? That's, I think, the more interesting thing to really kind of look at. Because unless it's something that's tied into intrinsic motivation, you're doing it for external validation. 

And that's going to be a challenging narrative, because it's going to keep changing and you're really subjecting yourself to the values of other people and the perceptions of other people. And that's, I think, the most unkind way to make that transition. 

Helen: Yep.

Nola: It has to be something that starts within yourself.

Helen: Yeah, completely. You have to do it because you want to do it, and no one else.

Nola: You have to do it because you want to do it. And you have to be comfortable with living through the transition, and managing people's emotions about that transition. Because sometimes the emotions of other people are the most difficult thing to manage, right. And unless you feel strongly about it, it’s going to be uncomfortable.

Helen: Yeah.

Nola: But I also have the personality where I’m like, I don’t really care what you think.  So, you know, a lot of it's tied to personality, right? So, who are you really? Right. That that's, that's really what you have to look at.

Helen: Okay. I think a lot of people have kind of said, yeah, when you actually get into it, it isn't just about your hair.

Nola: It’s not.

Helen: Because you have to have a degree of self-acceptance to be able to do it successfully.

Nola: Yeah, absolutely. For me, I walk into a room and I'm not the only person that has this colour hair or, you know, something similar. And for me, that's an adaption as well. Like I like being the person who stands out. I like being the only. 

So, my adaptation is now that all of these people are adapting. How does that make me feel, and how do I stand out in different ways that aren't necessarily tied to appearance. 

It's ever ongoing, whether you've embraced the dye or not, right?It's about how society really, feels about ageing in general.

Helen: Okay. Well, on that note, I'm just going to say thanks very much for joining me. You've been a fascinating guest.

Nola: Oh, well, thank you for having me. I was scrolling through your list. I love how you actually focus, and change the art for every individual guest. I think that's a lovely thing to do.

Helen: Thank you. 

Thanks so much for joining me for this week's show. I hope you've enjoyed it as much as I have. I'll be back again next week, but in the meantime, you can follow me on Instagram at happier.grey. Have a great week.