Meet Our Muse: Mara
Meet our Muse this month, Mara. Mara is incredible. If you’re lucky enough to connect with her, you’ll feel as if you’re meeting an old friend with whom you can talk to for hours. She is incredibly kind, driven, bubbly, and stylish. She is everything you want in a friend and muse. We’re so thrilled to share her with you this month.
Mara, could you please tell our community about yourself?
Sure! I'm 39 and I am a legally blind woman and mother and wife. I've been dealing with my disability, Retinitis Pigmentosa (RP), for 11 years now. And honestly, I don't even remember, well, it’s not that I don't remember, but the person that I was before, was such a horrible version of me. It's one of those things where I used to wonder why this happened to me. I was in a dark, dark space when I was diagnosed with RP. I was so lost, suicidal — but then I actually started to find some sort of purpose. Maybe this is why it was me and why I am now battling this eye condition, because it made me see differently and I wouldn’t be the person I am today if I hadn’t gone through it.
Like I said first and foremost I am a wife and mom. And I use my platform to share my journey. Every aspect of it, whether that’s my disability now or whatever I’m going through. I was on Instagram early and used to just enjoy posting pictures and people started reaching out being like “Oh, there’s this girl actually using that white cane”. It was a connecting factor. I started to meet more people like me and to share a lot more of my journey in terms of being legally blind. I have friends that I check in with daily, all over the world that I have never even met. But we’re the closest of friends because of this platform.
And then it just went to the point where I started to realize that I feel like I'm obviously more than just my disability. Like, I love other things. And I want to be honest that I’m going through many things as well, outside of my disability. Right now I’m connecting with organizations having to do with cancer, because of my mom, who I recently lost. And I’m grieving, like I’m really in it. One minute I’ll be fine and then next, I’m a hot mess, and I want to be open about that. Honestly, I’m a stay at home mom, just navigating the regular struggles — as we moms do.
Amen, sister. When you got your diagnosis, did you have your son already?
No. I was diagnosed in 2011 and Mateo was born 2017.
Yeah, I was just newly engaged actually and obviously a lot changed. You want to make sure your partner is okay with the situation, right? At that time I didn't expect him to still marry me because it's a lot, it's a lot to put on somebody and it's a big responsibility knowing that like this is the type of future my partner will have.
Is it a degenerative disease?
It is. So then a doctor's telling us, like there is a possibility that I could be completely blind and things will progress as the years ago. And I’ve noticed that things do progress. Like in terms of now, I don't really see much on my left. It's just like a bit of outlines, nothing too clear, but my right only has 5% vision. It's very, very tiny. So it's kind of closing in as well. So it’s a lot to put on your partner, Baz is our sole provider but we try to even out with me doing everything at home.
Well that’s a challenge on its own.
Yeah. When Mateo was born too I was so nervous that I would bump him or hurt him. Even now, I get nervous sometimes but we’re all doing our best. And that’s how I am with everyone, even on my platform. I have people reaching out with their new diagnosis, asking how I overcome certain things. I didn't even know there were so many of us going through vision loss. So I told myself that I wanna use a platform to really just be there for people like me, to share my deep thoughts of what I'm going through when it comes to my disability and beyond. I want people to know that you’re still able to do many, many things in life. I’m a parent, I go out. I don't want people to just be like, this is it, I have no future. No, you can still make things happen. You can still live your life the way you want it. It's going to be a little different — like there is a lot of struggles when it comes to your disability and raising a kid, but it can work.
Yeah. Moms get shit done.
Yes. I think it's just really that. And I’ve learned it’s okay to show your other side. I know some people would never understand, because right now I'm grieving. And its confusing to some people. I was even attacked by people saying how can you be fine one minute, and not the next? I lost my mom, I can’t explain it. But that’s what life is.
There's no timeline for grief. And as you know one of the reasons we have you as our muse this month is because our intention is kindness and you embody that intention completely. You’re incredibly kind to your community and to yourself. Is that something you’ve learned?
Oh my god. Uh, yeah. I think at some point I had to learn to treat myself well. And to me that’s living up to setting my own boundaries, whether you are my family or not, I’ve made it clear that it is okay to put myself first, and my needs and my mental wellbeing first. And that's showing kindness to me because my god, I've been through so much in life and especially this past year and a half where it's like, I'm sorry, but I need to put my foot down and set this boundary for myself and for my own wellbeing. And I think it's very important to do that, especially as moms. We give so much to our family and we really do neglect ourselves a lot.
Yeah. And I’ve learned to listen to myself first as well. There were so many things with being legally blind and being somewhat prominent online that I’ve had to navigate because I’d get messages like, “You're disabled. Why do you look like that?”. And I hate that. I hate that to the max. Like people think I’m faking it! Or you know I’ll get messages like, “If you’re blind how are you using your phone?” And it’s crazy! Like, it’s 2022, you don’t think technology has made this possible by now? Just makes me so angry, like, is there a certain look that disabled people have to have? It really says something when people are calling you out for faking your disability because of the way you look.
Oh my God, I never even thought about that. That is ridiculous.
When it comes to my disability, that took time. I’ve accepted it because life is just about accepting what happens to you and owning up to it. What am I going to do? Cry and complain about it every single day. Yeah. I did that for two years, but what came out of it? A lot of bad. But I told myself, how do I go about life now with this disability? How do I continue living life? And just kind of saying, you know what, there had to be some sort of purpose. And I think I found that. Before having my son, my purpose was to be here for people, for my community, because I made connections with people all over the world, because some of the countries, some of the people that I met along the way, they don't have the resources that I have here in Canada. And I remember how alone I felt despite all these resources, and all this help and I said, I don't want anyone to ever feel alone like that. And if these people from different countries don't have anyone to talk to, then you can talk to me, like message me I'm here. I’ll be your friend. My instagram is Ate Mara and Ate in the Filipino language, Tagalog, means big sister. I like to say that I'm a big sister to everybody.
That’s beautiful, Mara.
So that’s just me, trying to find why I am here. Not why did this happen to me? Maybe this happened to me so that I could grow up and realize what is really important. And what's important to me is staying happy and loving the people that I love. I tell myself, you know what, Mara, you have a disability and this could be how it is in the near future. And you just gotta live life each day. It's not gonna be easy every day, but you’ve got to find a way to navigate how to go about it now for you and your family. And that’s just it.
Mara is wearing the Landry Pant and Greer Top in Sage Rib