[00:00:00] Pam Uzzell: Do you believe art can change the world? So do I! On this show, we meet artists whose work is doing just that. Welcome to Art Heals All Wounds. I'm your host, Pam Uzzell.
[00:00:47] Not too long ago, a guest on my show called me and left a voicemail thanking me for having her on the podcast. Guests usually email rather than call, so I immediately dialed her right back. I got her voicemail and started to leave a message and I couldn't talk.
[00:01:07] I mean, I tried and my words came out sounding slurred, as if I'd been drinking. A lot. My tongue was frozen. So embarrassing. This happens to me all the time because I have a neuromuscular disease. If I've been quiet for a long time, my tongue can get stuck. I have to remember to warm my tongue up before I try to speak with someone.
[00:01:37] This week, I'm having a guest on my podcast for the second time. It's my daughter, Allegra. Allegra was on my podcast during Season 2, and that episode is one of the most listened to that I've had.
[00:01:52] She's an illustrator and writer, primarily. I told her that I was doing a season on belonging and she said that she wanted to talk about the idea of feeling like you belong in your body. She said this to me while we were attending the Myotonic Dystrophy Conferences past fall. Allegra and I both have myotonic dystrophy. It's a multi system disease. So some of the effects of myotonic dystrophy can be muscle weakness, muscle stiffness, like my tongue getting frozen, muscle wasting. Those are the ones that kind of make sense, but it can also affect your eyes, your digestive system, your brain, your heart, and can play a role in developing certain kinds of cancer.
[00:02:36] Allegra and I both have trouble with our eyes and our digestive systems. I've had skin cancer. Allegra was born with the congenital form of the disease, so she is also neurodivergent.
[00:02:49] It's been an interesting and challenging road parenting with this disease in our lives because when Allegra was first diagnosed 27 years ago, we were given very little information. We were told that Allegra might struggle to learn to read and that she should wear sunglasses to protect her eyes from the sun and have regular EKGs to monitor her heart.
[00:03:13] I am sad to say that some of Allegra's teachers really had very little patience for the way that she struggled in school, which mostly stemmed from there being way too many kids with too many different needs put into one classroom.
[00:03:27] But there were also amazing teachers who loved Allegra's original style and unusual interests. When Allegra was in her early twenties, she met another young woman who gifted her and all of us really with the term neurodivergent. For me, especially, it was a gift. Because, like some of her teachers, there were times when I struggled to understand Allegra's take on things. Having this word, neurodivergent, really freed me to just relax and allow Allegra to teach me the way that she thinks about things.
[00:04:05] I love having these conversations with Allegra on the podcast. For whatever reason, when we talk on the show, she shares things with me that I never would have guessed. On this episode, she talks a little bit about how great it is to know other people with the same disease but mostly, she talks about beauty, and how finding her own sense of style has helped her redefine her idea of beauty, and she gives me some very good advice on the social anxiety I sometimes experience.
[00:04:42]
[00:04:42] Pam Uzzell: Hi, Allegra.
[00:04:49] Allegra Thelemaque: Hi.
[00:04:49] Pam Uzzell: So, will you tell people who you are and what you do?
[00:04:53] Allegra Thelemaque: I'm Allegra Thelemaque. And I write stories, [00:05:00] I draw pictures, I sing a lot. And I dance a lot.
[00:05:04] Pam Uzzell: We just got back from the Myotonic Dystrophy conference and whIle we were there, as we were staying in our hotel room, I was talking to you about the fact that I was doing a season on my podcast about belonging and you started to tell me something that was so interesting and I'm hoping we can talk about that here. You said something about this idea of belonging in your body.
[00:05:31] Do you remember that conversation?
[00:05:33] Allegra Thelemaque: Yes.
[00:05:34] I Had this very selective idea of what beauty was, and I thought you had to look a certain way, you had to have a certain color of hair or skin or features, and when I looked in the mirror, I didn't see any of those. But as I got older, I realized that beauty is subjective and beauty isn't just one look or the color of your hair or the color of your skin or features on your face.
[00:06:11] Pam Uzzell: I do remember when you were growing up like one time when we took you when you were little for swimming lessons, and all the kids were around the pool and were waiting to hear who their swim teacher was. And you spotted this one swim teacher who had long blonde hair and blue eyes. And you said, I want her as my swim teacher. She looks like a princess. And I was sitting there, of course, just keeping my fingers crossed, like, please, please, please let Allegra get her because I knew that you were a very strong willed and stubborn little human being. And of course, they called out that you were supposed to go have swim lessons with this guy. And not the teacher who in your words looked like a princess and you screamed and screamed and you refused to go with him and you said, no, I want to take swim lessons from the swim teacher who looks like a princess. And we had to leave because you wouldn't go with this other guy. So, was that your idea of what was beautiful?
[00:07:27] Allegra Thelemaque: Probably at the time because all the princesses in the Disney movies like Cinderella, Aurora, were blonde. And so I thought that beauty was supposed to be blonde and white skin and that's what, that's what I was into.
[00:07:48] Pam Uzzell: That's not what you have. You have dark, super curly hair. Your skin
[00:07:53] is sort of more of an olive tone. Your eyes are brown. So when did you start, or have you changed your ideas about what can be beautiful?
[00:08:02] Allegra Thelemaque: I started to change my ideas my senior year of high school.
[00:08:08] Pam Uzzell: How? Why?
[00:08:10] Allegra Thelemaque: It took a very long time for me to shake the idea of what was beautiful because I spent so much of my life thinking that a certain look was what I wanted.
[00:08:21] Pam Uzzell: When you started this conversation, I thought you were talking about the idea of belonging to your body also as the idea of coming to terms with having a disability.
[00:08:33] Allegra Thelemaque: It was, but mostly because I was surrounded by people that had one.
[00:08:40] Allegra_Pam: Had disabilities?
[00:08:41] Allegra Thelemaque: Yes, not just what I had.
[00:08:44] What I, what they had, some of them were worse than what I had. and that sort of helped me come to terms with having one.
[00:08:54] When I say worse, I mean a more, I don't know if aggressive is the right word, more aggressive case than what I had..
[00:09:05] Pam Uzzell: I see. Well, it's interesting because going to the myotonic dystrophy conference last year was our first time to go. And for me, that was the first time to ever meet either adults or young people with myotonic dystrophy. And I know it was your first time meeting other young adults with myotonic dystrophy. I'm just wondering how that feels and if that has also shaped your idea of feeling this sense of belonging in your body. By meeting all these people who do have the exact same thing that you do.
[00:09:42] Allegra Thelemaque: I don't know if it helped with the belonging. I think it just helped me feel like, I had people that I could talk to that really knew what I was going through, and I wouldn't have to explain in detail as much as I do when I [00:10:00] talk to people that don't have it. And some people that I talk to just don't even really understand at all.
[00:10:09] They see it as lazy, they don't see it as an actual thing that I just need to work through. They just don't get it, and having people that do have it and go through it all the time. I don't have to explain. I just have to say what's going on. They totally get it just right off the bat.
[00:10:27] Pam Uzzell: .
[00:10:27] Yeah. Let's go back to talking about beauty because one thing I will say about you and you know this already, but I'll just say it again. I love your hair. It's dark and curly. And I always hated when you would try and iron it or make it be flat. It just was always like,
[00:10:49] you're trying to turn it into something that's not you and that takes so much work.
[00:10:55] I just always thought, but it's so beautiful, so curly. I would love to have hair like that.
[00:11:01] I would still love to hear more about now what you think about when you think about what you look like?
[00:11:08]
[00:11:08] Allegra Thelemaque: Trying to find my style was a big one and I decided to give the styles a person like a character from a book or something to sort of try to see it and what kind of clothes I would need to do to fit my style. After that that person sort of didn't go away It sort of just stayed but It faded away a little bit.
[00:11:40] It wasn't as sharp because I was doing those styles now and they're in me so I can still see them when I pick out my clothes and stuff, but they're not like, a picture to me anymore. Hmm. But they're there to sort of guide me when I get dressed in the morning, when I do my hair, when I do my makeup. They're there.
[00:12:01] Pam Uzzell: What are some of your favorite styles?
[00:12:04] Allegra Thelemaque: Cowgirl.
[00:12:05] Pam Uzzell: Cowgirl. I did not know that. Well, I do know that, you have the boots, so I take that
[00:12:10] back.
[00:12:10] Allegra Thelemaque: I love goth,
[00:12:12] Allegra_Pam: You do really elaborate makeup when you're doing your goth look, which I totally
[00:12:19] love.
[00:12:19] What kind of clothes do you wear when you're doing, your goth style?
[00:12:23] Allegra Thelemaque: I have a few goth shirts., they're usually like black, um, or vampire ish looking shirts. And when I wear those, I wear black jeans or a black skirt. Just a lot of black.
[00:12:39] Pam Uzzell: Mm. When you were younger, you had one thing you wore that I would never let you wear because I was afraid people would make fun of you at your school because you had some bullies at your school. There was a particular bully and you had bought this little, sun bonnet when we went to a goldrush town and when you wanted to wear that to school I wouldn't let you because I was afraid that your bully would make fun of you.
[00:13:03] Allegra Thelemaque: I don't know if I would even have noticed. I noticed bullies, but I don't know if I would notice that they're making fun of me because of what I wore.
[00:13:14] Pam Uzzell: Mm
[00:13:15] Allegra Thelemaque: I just thought at that time that bullies were just mean
[00:13:21] Pam Uzzell: Which they are.
[00:13:22] Allegra Thelemaque: Not, they weren't picking on you for a certain thing, so, I don't know if I would even have
[00:13:27] noticed.
[00:13:28] Pam Uzzell: But as a mom, You have so many fears of your child being picked on. And it wasn't just you, it was with Lydia too and Lydia could say that probably many times when people were mean to her, I perhaps overreacted just a little bit. And the same with you. You once told me something that your bully said, and I told you to say something back to her, which contained a curse word, thinking that, oh, we're just talking, Allegra, will never say that and you actually did say that back to her and then,
[00:14:06] Allegra Thelemaque: It made it worse.
[00:14:07] It
[00:14:07] Pam Uzzell: it worse, yes, and I had to come in. First of all, the leaders in this particular group you were in did not believe that I had told, you said my mom told me to say that and they didn't believe you so I had to go in and tell them that yes indeed, I had told you to say that. I think as your mom,
[00:14:27] as a mom in general, that I tend to be a little bit overreactive to anyone being mean to either of you. So I do recognize that that's something I could have done better. Can still do better as a parent.
[00:14:43] Allegra Thelemaque: I take what you're saying very literally, especially in a bully, situation.
[00:14:48] Allegra_Pam: I know. But if you're wearing a style that's really pronounced, does that make you feel more comfortable and like you belong a little bit more or how [00:15:00] does it make you feel?
[00:15:01] Allegra Thelemaque: It has nothing to do with belonging for me. It just has to do with whatever I like and how I feel when I wear it that matters. It doesn't matter what anyone else thinks. It doesn't matter, what the occasion is. As long as I feel good about wearing that to the occasion. That's all that matters.
[00:15:23] Pam Uzzell: Mm. Well, that's very wise. You kind of messed up my idea that you're going to give us advice on belonging though, Allegra.
[00:15:32] Allegra Thelemaque: Well, I have advice. It's just, I don't know how to explain the advice I have. Because when I talk to myself, everything makes sense. What do you want advice on, exactly?
[00:15:45] Pam Uzzell: Like if I went somewhere, which this happens to me a lot, if I went somewhere and I don't know a lot of people. Or even if it's a big group, big groups are really hard for me. First of all, it starts with this feeling of like, Oh, I feel shy. Oh, I feel like I don't know anybody. And then I start feeling awkward. Like, I feel like I start imagining that they're projecting that onto me of like, Oh, you know, who's she? And you know, how come she's not fitting in? I feel like me not feeling like I belong is something that people are noticing and wondering about. Like, why does she feel so awkward?
[00:16:25] Allegra Thelemaque: Well, what I do is I have those feelings, but I turn it around in my head that, like, oh, who is she, like, oh, that's amazing, who is that lady? I feel shy to approach her, so I'm not going to. And the more I do that, the more I think of it in the opposite way, it makes me feel more like I belong. In that space. And I'm not so shy. I am more open. And that's why some people that I meet now are like, wow, you don't seem shy. I like, I really am inside.
[00:17:08] I don't show that I'm shy. and it makes me feel like all these people just sort of come to me because I seem more open to talking and I've already convinced myself that they're really in awe of who I am.
[00:17:25] Pam Uzzell: I love that. That's such a great strategy. I will try that.
[00:17:32] Thanks for being on my podcast again
[00:17:35] Allegra Thelemaque: No problem.
[00:17:35] You're listening to Art Heals All Wounds.
[00:18:05] Thank you so much to Allegra for coming on the podcast again. If you want to see some of Allegra's zines, I'll leave a link to her Etsy shop in the show notes. Do you have a story about belonging that you'd like to share? If you go to my website, arthealsallwoundspodcast. com, you can leave me a voicemail with your story and I'll include it in a future episode.
[00:18:27] While you're at my website, if you'd like to make a small donation to the show, that would be amazing. Just click on the link, buy me a coffee. Any gift you make goes a long way to helping me keep this show going. Thanks for listening. The music you've heard in this podcast is by Ketsa and Lobo Loco.
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