Title:
Twin Vibes: Navigating Life with M.E. and Wesley Sanders
Subtitle:
Pfeiffer Syndrome and the Power of Sisterhood
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.
Let’s go.
Welcome back to Pushing Forward with Alycia. I’m Alycia. I’m so excited about today’s episode. Not only is this episode about sliding into DMs, creating new friends, opening up new conversations, and learning about new people, but we’ve got a twin vibe today. And you as a Pushing Forward community know that I love a twin vibe.
We have twinsies
in the house today. I am so excited about this. Our paths crossed when I saw these two beauties at a event for disabled. I’ve been wanting to go to one of these events. So I was following and saw the twins. Definitely had some FOMO, and then started diving into Instagram. M.E. and I had a little chat back and forth, and I invited her onto the show, and her sister Wesley is here.
So we’ve got M.E. and Wesley Sanders. I don’t know anything about them other than what I have been stealing off of the internet and off of social media. Other than these two look like they are amazing humans, strong women, fashion-forward completely. And I’m just really excited to hear your story.
Thank you so much for coming onto the show. Welcome, twinsies, to the show.
Wesley Sanders: Thank you.
M.E. Sanders: Thank you so much for having us. This is so much fun.
Alycia Anderson: I’m so excited. I think to start, if it’s okay with you, I want you both to introduce yourselves a little bit. Maybe we can hear a little bit of your backstory. Share a little bit about your disability, whatever you’re comfortable with, and just give us a little beautiful, painted, twinsie mural of your life.
Wesley Sanders: Okay, so my name is technically Mary Elizabeth Sanders, but I go by M.E., as I was telling Alycia, straight business. I was born with Pfeiffer syndrome, which is a craniofacial condition. It’s premature fusion of your skull, and this will affect other limitations. Some people with Pfeiffer syndrome might have fused elbows. They might have some limitations with,
M.E. Sanders: your body. So maybe your neck is fused, maybe your legs are limited. They might not be fused. But I also think mostly that because we have Pfeiffer syndrome, our skulls didn’t naturally grow when our mom was pregnant. So that means we had to have plastic surgery growing up, so our brains could grow. ‘Cause our skull can’t naturally grow.
Wesley Sanders: And then we do have fused elbows, like Wesley said, which I think a lot of people don’t understand the magnitude of elbows. You have to put your hair up. I can’t do that, so my hair is always down. Or I’ll put up her hair, because I can bend my elbows a little bit, but not as much as she.I can’t.
M.E. Sanders: Yeah, that’s right. You can’t bend them. But I can bend a little bit. I think that’s another thing. I really have been trying to find doctors that will help with fusion of elbows.
Alycia Anderson: Wow. So you’re telling me that you’ve had to have multiple cranial surgeries, as your brain was growing. That is incredible, number one. And part of your disability shows up with fusions and joints.
Wesley Sanders: Yeah.
M.E. Sanders: Yeah.
Alycia Anderson: I actually have fusions in my knees as well, so I relate to that a little bit.
Wow, that’s incredible. And I could see maybe a benefit of having a twin if your elbows don’t bend, typically. They bend in your own beautiful way. You’ve got a twin to help you do your hair.
Wesley Sanders: Actually, I did her makeup today. I did her hair today. I’m the stylist, if you will. She’s on page style.
Yeah, exactly. The behind the scenes. Yeah, and then I’ll help her with certain things. Put on a necklace.
Sometimes be the typical thing people can’t do. I think it’s heightened because we can’t bend. And then I had scoliosis, so I have two rods in my back. I think that definitely heightened it.
Alycia Anderson: How common is Pfeiffer syndrome?
Wesley Sanders: It is one in 100,000, I believe the number is, or maybe one in 150,000. It’s not common, but it’s not never.
Alycia Anderson: And you two are identical?
Wesley Sanders: But it is extremely uncommon to have twins, much less twins with unaffected parents. And my parents are both not affected.
Alycia Anderson: Oh, wow.
Wesley Sanders: Yeah.
Alycia Anderson: So is it genetic?
Wesley Sanders: It is a genetic. Yeah.
Alycia Anderson: So I have an identical twin. She does not have a disability. I find it interesting that you two, and I guess it makes sense because you’re identical twins, one egg split into two, that you both have the same disability. And you can correct me if I’m wrong, I’m just totally spitballing right now.
From a disability standpoint, that seems like such a incredible lived experience that your bestie is navigating a similar life path. Can you share maybe one of the highlight moments about that? And maybe one of the things that has surprised you the most was sharing that same lived experience.
M.E. Sanders: For me, personally, if we go to a sleepover or something like that. I went to my cousin’s house in London, and I automatically have a routine to help with say different ways. And I said to Wesley, I said, “Do you want me to help you?”
Wesley Sanders: You said, “I’ll help you get dressed.” She didn’t realize my cousin was there, and my cousin was like, “Help me get dressed.”
Because she thought I was making a joke. But really, this is my everyday reality, is that I help Wesley put on clothes and take off clothes. Realistically, it is nice for us to not feel embarrassed to ask for help because we are both going through it. It’s an automatic understanding that like, “Okay, hold limitations of X, Y, and Z.” And I know that I will help her with X, Y, and Z.
M.E. Sanders: Yeah.
Wesley Sanders: And then vice versa. So we just had this routine.
Alycia Anderson: You know what’s cool about that is I have the same thing with my sister, disability or not. She knows what I need help with as the disabled twin. And she’ll just jump in and do it, which is amazing. And you just used the word help. Helper is what she really was when we were growing up.
But there’s also things that I help her with, even though she doesn’t have a disability, and it’s very automatic as well. That’s just the twin connection.
Wesley Sanders: No, I totally agree. My limitations are definitely more severe than her limitations, but I would say with what we help with, it’s very equalized. If she wants me to make a phone call, I will make a phone call.
M.E. Sanders: She’s businessy, and I start giggling.I hate how to do it.
Wesley Sanders: It depends on the circumstance, but I feel like we definitely equalize in the health department.
M.E. Sanders: Okay.
Wesley Sanders: That might be a twin thing. That might be a sister thing. That might just be a connection thing, I don’t know. But definitely, on some level, codependent on each other.
Alycia Anderson: Oh, the codependence on my end, too, is intense, honestly. When we get together, we’re wanting to get back in the womb. Do you wanna go snuggle?
M.E. Sanders: Yeah. No, totally. Do you wanna just lay together? I think, also, when Wesley was in the hospital this past summer, I didn’t realize how much I need her or she does for me, until she was in the hospital. I was like, “You gotta be kidding me.” I needed her help on something.
Wesley Sanders: I think it was just an email that you wanted me to look over.
M.E. Sanders: Yeah.I have no problem looking at an email. She’ll just want somebody to review it. And I know what kind of style she wants or what language she’s trying to put out. I was like, “Yeah, she gotta get up, she gotta get well.”
Can we talk about that a little bit?
Alycia Anderson: You mentioned a couple things in the beginning of this. A good amount of medical challenges throughout life. I have, too. I think that just comes with having a congenital disability and navigating it.
From your perspective of overcoming those challenges together, you mentioned one of us waiting for the other one to get out of the hospital. I know for me and my twin, that’s always the toughest part, the twin that’s waiting for the other one to get better. I think it’s sometimes easier to go through the medical stuff than be the one that’s worrying about, “When is she gonna get home? Is everything gonna be okay?” Can you talk about that a little bit?
Wesley Sanders: Okay. I always say being the patient is so much easier than being the person that’s.
M.E. Sanders: Witnessing it.
Wesley Sanders: Yeah, witnessing it. Because watching somebody go through it is so much harder, in my opinion. Maybe that’s on some level because I know what it’s like. It’s just so much easier to go through it yourself rather than watch somebody else.
M.E. Sanders: I agree. ‘Cause I think looking at you struggling makes me sad.
Wesley Sanders: Especially if there’s nothing you can do to alleviate or create a solution to make this better. With yourself, you’d feel, “Oh, I know I can do this, and this.” Sometimes you can make it better. But when it’s somebody else, there’s really nothing you can do other than be supportive on some level. Yeah.
M.E. Sanders: No, I agree. I also think I would handle certain things a certain way. As far as when you’re in the hospital, I think you aren’t pleasant, I guess you could say.
Wesley Sanders: Well, the personality, also.
M.E. Sanders: Yeah. Yeah. And viewing it as just a waiting game, as you said.
Alycia Anderson: Yeah, it’s pretty intense, honestly.
M.E. Sanders: Mmm-hmm.
Wesley Sanders: Yeah.
Alycia Anderson: ‘Cause for myself and my sister, it’s typically me going through it and her being the one that’s waiting. That’s just an interesting dynamic that you two have each other to support that back and forth. Talk about your parents a little bit. Especially when you were little and going through a ton of surgeries collectively, individually. Talk about that and your parents a little bit.
Wesley Sanders: Okay. Yeah. So my mom actually grew up Christian Scientist. I don’t know if you know what that is, but that is a religion that doesn’t believe in medical intervention, which is fascinating.
M.E. Sanders: Plot twist.
I don’t know if it’s a plot twist, but who is a celebrity that believes in that? I think it’s Ellen Degeneres.
Wesley Sanders: Maybe.
M.E. Sanders: I don’t know.
Wesley Sanders: There’s somebody out there that believes in it. So anyway, I say that to say, when M.E. and I were born, she didn’t even know she was having twins. Much less twins with Pfeiffer syndrome, so that was shocking. And it was pretty apparent that something was severely bad. That there was something wrong, like something is not quite right. And her mom, whenever we were born was like, “I hope you’re not getting them surgeries.” And my mom was like, “I think they’re going to need some surgery. It’s honestly comical on my end just to know that’s part of our story. And then my dad, he grew up in a small town in South Carolina. Everybody knew him.
And so he had almost like a celebrity factor to him. With M.E. and I growing up, we had that benefit in that regard that his
M.E. Sanders: family is known. I don’t think we were ever bullied or anything.
Wesley Sanders: Yeah. We were accepted more easily. And I think that might have to do with the fact that.
Who our family was. But I also think we fought, not fought to have a personality. We have personalities.We’re thought to have a normal life.
M.E. Sanders: Yeah. A normal life.
Wesley Sanders: Yeah.
M.E. Sanders: And I think that was part of our parent’s doing, as well.
Wesley Sanders: Yeah.
Alycia Anderson: Parents are so powerful in that.
Wesley Sanders: Yeah, I agree.
M.E. Sanders: I don’t mean to keep comparing my story.No, I’m interested.
Alycia Anderson: My parents didn’t know they were having twins. They did not know that I was gonna be born with a disability, either. Unbelievable that is in both of our paths. I’m much older school, I’m sure.
So that’s wild that your mom didn’t know. It’s also interesting that in your mom’s religion, they don’t believe in medical intervention. But then you said your dad’s a farmer. That’s amazing.
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Okay, you two are born. They’re like, “You absolutely need medical intervention.” All of that starts. I would assume in the beginning, all of that was happening collectively, like you were both having surgeries at the same time?
Or did your parents have to manage who went in? How did they do that?
M.E. Sanders: So it was back-to-back. Growing up, we went to MUSC, which is in Charleston. But they didn’t really have a big children’s hospital, so we went to Miami.
Wesley Sanders: We both went to John Hopkins, wasn’t it John Hopkins?
M.E. Sanders: Oh, yeah. Basically, there was a lot of different hospitals we’ve been to, but we would do it back-to-back.
Wesley’s older than me by 20 minutes. So doctors would always have Wesley go first, and then I would go after, which was honestly a little terrifying, to be honest. You’d rather be doing the surgery, or having the surgery than being the witness, because I would witness what I’m about to face.
Wesley Sanders: You’re experiencing the pain.
M.E. Sanders: Yeah. Yeah.
Wesley Sanders: You’re experiencing the pain twice.
M.E. Sanders: Yeah.
Wesley Sanders: Because you’re watching it, and then you’re experiencing it.
M.E. Sanders: I’m like, “Oh, great. This is my future.”
Alycia Anderson: Wow.
M.E. Sanders: It used to be back-to-back, and then all the surgery, I think, got longer and stuff.
Wesley Sanders: I don’t know if they got longer, they just became different.
I think that’s what it is. For example, M.E.’s eyelid, there was always a problem with her eyelid. So she always had another surgery with her eyelid. Or me, I would always have another QED compressive. They can never get that stabilized. We started having some differences.
M.E. Sanders: That’s true. We had different surgeries.
Wesley Sanders: Yeah.
M.E. Sanders: As we got older.
The same, but different.
Wesley Sanders: Yeah.
Alycia Anderson: My sister and I still look very much alike, but we look less alike.
Wesley Sanders: Yeah, I get that. Yeah.
Alycia Anderson: And then something that you said was really interesting, too, was you were never bullied. And maybe it was ’cause your dad was a famous farmer, or maybe it was because of your awesome personalities.
I wasn’t ever bullied either. Well, okay, I was. When I was really young, a kid used to call me Gorilla Arms. I talked about my TEDx talk. Other than that, I didn’t have a lot of bullying, but I think it’s because I had a twin sister who was always my friend.
Wesley Sanders: That might be it.
Alycia Anderson: Being disabled and in school. I work with a lot of young kids and students in school and I go, “What a different existence that would’ve been if you’re alone, even without a disability.”
I watch my niece going to school, I’m like, “Ooh, that looks so scary without your twin. How do you go?” So, I wonder if there’s something there with both of our sets of twins that maybe the bullying was limited or non-existent, because we weren’t alone. We had each other, whether we had other friends in the moment or not.
M.E. Sanders: Yeah, that’s actually a really good point, because I feel like we were so protective of each other. The reason I brought that up was a couple years ago, somebody came up to me and he donated to some craniofacial organization. And he was like, “How many times have you been bullied?”
And I thought it was an odd question. I think people assume because we look different, we are just getting bullied left and right. In a way, I think it downplays who we are. Just because we look like this doesn’t mean everybody thinks the worst about us.
You know what I mean?
Wesley Sanders: Or that we’re getting treated horribly. Yeah. ‘Course we’ve had poor experiences. Of course there have been mean things, but I don’t think we will actively ostracize the bullied.
Even if we were, so to speak, We try to be positive people.
Alycia Anderson: That statement, from whoever said that to you, just shows the bias that people immediately have on disability, without even knowing who you are or even having one moment of conversation. So that’s super interesting. That’s the work that we’re doing here, trying to share the real realities.
Just because you’re disabled doesn’t mean that you’re gonna be bullied. Just because you have a disability that’s visible that might be different, doesn’t mean that you’re gonna be put into this other box, whatever it is. That’s an interesting thing to ponder on, honestly.
M.E. Sanders: Yeah. I think we all get this mental picture of how somebody’s supposed to be. What people have a definition of what suffering is. I don’t think it’s just that. I think because we live in a very superficial world, people immediately probably think that we’re picked and talked about how we look.
Wesley Sanders: Yeah.
Alycia Anderson: I think you’re absolutely beautiful.
M.E. Sanders: Oh, thanks.
Alycia Anderson: Since we’re talking about beauty, let’s talk about femininity a little bit. I know that’s deeply personal to you. It’s what it seems to be, this relationship with beauty, style, self-expression, and this polished version that you mentioned that definitely shows up through your storytelling on social media. Can we talk about what femininity means to you, and all of these components that come with it, and how your self-expression comes out through that.
M.E. Sanders: Oh, femininity means to me wearing what I wanna wear, feeling my best. I like being a girl, I guess I could say. I’m saying, I love girlhood. You know what I mean? I love getting dressed up. I love makeup. I love getting my hair done. On social media, I’m all about posting a cute picture. And so femininity means feeling my best, even when you have surgeries and stuff. When they cut your hair, I don’t feel feminine and I’m actually very on edge. I remember a couple years ago when they cut my hair and I was thinking, “I am 22. This does not feel good.” Femininity really means just feeling your best and wanting to bunch and stuff.
Alycia Anderson: I just think how you’ve taken your femininity and the importance of it. The way that you elevate it in fashion, and your personality, and the way that you are showing up on social media. For me, I’m looking at it right now, it’s really beautiful. It paints a picture of how dynamic two lives can be, and so beautiful in such a unique and lovely way
How does that elevate you? It just seems like it’s very important, honestly, in both of your lives. And I think the way that you show up gives other disabled women permission to flaunt it, too, and to find whatever self-expression that is for them. I don’t know.
I just wanted to hear your thoughts on that.
M.E. Sanders: No, I agree. I think if you are disabled or limited in any capacity, you shouldn’t feel limited to express yourself in any capacity. If you wanna express yourself through fashion, go for it. Look how you wanna look. And I know there might be some limitations on some level. You might not be able to wear this or wear that, but still find a way that you wanna express yourself, so you could feel good about yourself. I love to get ready. For example, over the holidays, our family has an oyster roast on Christmas Day. It took forever to get ready. I did my makeup multiple times. I was like, “It doesn’t look good. Is this outfit too basic?” Stuff like that.
Wesley Sanders: You want a statement.
I want a statement, too. A lot of people know me as the girl that loves cheetah print. I wear cheetah print all the time. You probably see that on my Instagram. There’s probably a picture on every slide. And I’ve been like that for many years. Since probably third grade.
M.E. Sanders: Yeah. Since the Cheetah Girls. Honestly, that established my relationship with leopard. People just get me leopard stuff. I’m like, “Okay, I’ll take it.”
Alycia Anderson: I love it. It’s your vibe. It’s your signature.
M.E. Sanders: Yeah, exactly.
Alycia Anderson: It’s how we tell you two apart.
Wesley Sanders: Yeah. You won’t find me in cheetah, but you will definitely find M.E. in cheetah.
M.E. Sanders: That’s true. That’s true.
Wesley Sanders: Yeah.
Alycia Anderson: My twin wears a lot of cheetah too, and I don’t. Got that in common as well.
M.E. Sanders: Maybe.
Wesley Sanders: Yeah.
M.E. Sanders: I would find it to be a personality trait. I’ve added that to my things I love. Cheetah.
Alycia Anderson: If there was one thing that you wanted the world to know about disability and the lived experience, what would that be?
M.E. Sanders: Just because you have this condition or disability, you don’t need your life to be limited. Maybe you have limitations, but you don’t need it to be limited. And I say that in the sense of yes, Wesley helps me all the time. And I help her in different ways, but we find a way to make it work. And I also think self-expression, I find a lot of joy in being, as I said, a girl. Womanhood. It was funny because I had this conversation with, I feel like it was a craniofacial individual. And she was talking about how she was married and has kids. And I always felt like I couldn’t have that because, “Oh, people are superficial or whatever.” I think it means that you can’t look at your life and think, “Oh, you can’t have certain things because you look like this, or you have this disability.” Because everybody deserves to feel like they have any opportunity given to them.
Alycia Anderson: And there’s somebody out there for everybody. I used to feel like that, too. And I think, oftentimes, it’s more us needing to get out of our own way and believe that we deserve those things, too, and that we can accomplish them. So I love that you just mentioned that. I think that’s gonna help a lot of our community, honestly.
That’s beautiful.
M.E. Sanders: Thank you.
Alycia Anderson: Okay, Wesley.
Wesley Sanders: Piggyback on what M.E. said. But having a disability does not mean you should be limiting yourself in any capacity. Your life will be altered.
Yes, your life might look differently, but if you have desires in life, explore them and try to accomplish them. Your disability might have taken some things from you, if you will, but that doesn’t mean they take your life. You need to have ownership of your life and explore any and all opportunities.
M.E. Sanders: Invent yourself.
Wesley Sanders: Yeah.
Alycia Anderson: I love it. We’re gonna leave all your social media and information in the show notes, so everybody can start to follow you, connect with you, make friends, and all of the things. We wrap this show up with a pushing forward moment. Did we forget anything before? Is there anything else that you wanna share?
Wesley Sanders: I think we got it.
M.E. Sanders: Mm-hmm.
Alycia Anderson: Okay. I love you, two. So we end the show with the pushing forward moment. This is just a little mantra, a quote, a little motivation that you live by. Is there something that each of you, or collectively together, can share with our community to send them off for a good day today?
Wesley Sanders: In fifth grade, M.E. and I did a dance recital. What was that song?
M.E. Sanders: “I Hope You Dance.”
“I Hope You Dance.” I think that’s applicable for any scenario in life, regardless of what life throws at you. I hope you dance. Just whatever it is, have fun. Life is already hard enough.
Wesley Sanders: Yeah, life is already hard enough, so find joy, wherever it is, and I hope you dance.
M.E. Sanders: Yeah. I think that’s why I love TikTok, to be honest, because I will literally say anything. I want people to feel like they have the resources to be themselves. At first, on social media, not to get off topic. But I would be like, “Oh my God. I mean, I can’t talk about this because that’s so embarrassing or whatever.” Then I realized, this is my life. I can’t let other people control me on how I feel or what my life is, because this is my reality. And I feel like whatever your reality is, you just need to own it. I know people will love you for who you are.
Alycia Anderson: Own it.
Wesley Sanders: If they don’t, that’s not on you.
M.E. Sanders: Yeah.
Alycia Anderson: Ugh. Beautiful. Thank you so much for
Wesley Sanders: Thank you.
Alycia Anderson: coming on this show, what an amazing conversation. And I’m really looking forward to growing our friendship. Next time, we’re gonna do a twin episode with all four of us.
Thank you so much. It was so great to meet you two. Thank you to our community. We’ve got another great episode for 2026. I love it. Thank you for showing up. Please share, subscribe, review, all of the things for this podcast to help us keep growing. This has been Pushing Forward with Alycia, M.E., and Wesley, and that is literally how we roll on this podcast.
We will see you next week.