Meet Alexi on the Beyond Type 1 Leadership Council

11/26/18
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Meet Alexi Melvin, the newest member of the Beyond Type 1 Leadership Council! Alexi recently spoke with us about her life with T1D, her history of working with Beyond Type 1, and the future of Type 1 diabetes.


What is your personal history with Type 1 diabetes?

I was diagnosed with T1D when I was 14. I had just skipped a grade, so I was going into my sophomore year of high school. It was a public school. I’d been in a charter school before and you know — it was tough — because I just trying to establish a friend group, and kind of figure out where I belonged. It  came out of nowhere. Luckily, my mom looked up the symptoms and had a pretty good idea of what it could be. I spent three days at Phoenix Children’s Hospital in Arizona. They were fantastic, and I felt really prepared. I still talk to the nurse practitioner that I worked with, Chanda! So, I think I had a really good support group from the get-go, from my parents, to my best friend, Erika, to the hospital staff. I decided to sort of just take hold of it right away. My mom and my dad were always there if I needed them, but I always did all of my shots. One of my best friends in high school got diagnosed almost exactly a year after I did. Since then, we have had each other to sort of lean on, which really, really helps. It took me a while to get on a pump, but over the years I have tried a couple of different models. It didn’t really work out. Now I’m back on injections and insulin pens just seem to fit my lifestyle the best.

How did you first hear about Beyond Type 1? How did you get involved? What have you been doing with us for the past few years?

I think it was on Facebook that I saw something about Beyond Type 1. It was an article that addressed the potential awkwardness of sex plus having Type 1, and I thought it was so admirable that an organization was tackling these very real concerns that most people shy away from talking about. I immediately reached out and said, “How can I get involved with this?” I contacted Sarah Lucas and I started writing articles pretty much right away, and getting involved with various events. I wrote anything from breaking news, to really personal stories. It has been amazing. It’s really incredible to have been here almost from the beginning and see how it’s grown. I think Beyond Type 1 was the launching point for this huge T1D community that we’re seeing now. I think it really empowered the majority of these influencers that are on Instagram saying “Hey, I have Type 1, and this is what I’m doing and this is how I’m thriving. You can do it, too.”

What are you hoping to accomplish in your leadership role at Beyond Type 1?

I think at this point, Beyond Type 1 is at this sort of precipice where we’ve done so many things for the community, and covered all these things, but now it’s like how can we expand all that? I think it’s about to blow up even more than it has in a way that really going to shake the Type 1 universe, it’s very exciting. Everybody else who’s on Leadership Council has inspired me for years. It’s going to be such an honor to join them. I’ve always been in the arts, I’ve always been the most passionate about creative endeavors. I think the sky’s the limit with the sort of content we can release now. I really want to be a part of all the inspiring stories and all the empowerment that can come from that. I want to get my hands dirty and be involved in all sides of it now.

I studied writing at The New School in NYC, and I’ve written for the San Francisco Chronicle, among other publications. And, as I mentioned, I’ve been writing for Beyond Type 1 for a long time, so I have a really good idea and a good familiarity of what’s been covered. So now, I think getting involved in editorial on an elevated level fits perfectly for me. I will definitely be diving into all of the untold T1D stories that are still out there, waiting to reach us.

Are there any specific topics surrounding Type 1 diabetes that you’re especially passionate about or interested in covering?

I think there are a lot of topics that people aren’t comfortable talking about yet, which is understandable because Type 1 is such a sensitive subject, and such a tough thing to deal with day-to-day. But I do think it’s important to sort of break the ice with a lot of these things, ranging anywhere from losing someone to T1D to the topics that people tend to argue about like diet changes i.e.: low carb lifestyle vs. taking more insulin for the things that you have always loved. Also, I’ve written a lot about mental health level with regard to anxiety, and fears surrounding highs and lows. You know, the things that scare us, but also the things that make us laugh. The more light-hearted stories that people can really relate to, and say, “Yep, this is my life, but, maybe I’m not so alone. And maybe I can laugh every now and then.”

How has living with Type 1 diabetes changed from the time you were diagnosed to now?

CGM technology wasn’t a thing right when I was diagnosed, so I was always pretty paranoid about checking my blood sugar constantly. My fingertips looked like star constellations — that’s never going to go away. I’ve been kind of conditioned to still test a lot, even though it’s no longer as necessary. We get used to the new technology pretty easily, but sometimes I will get a text from my mom or my girlfriend about just having looked at my blood sugar levels on their phones, and I have to take a minute to appreciate how groundbreaking that is. To see how life with Type 1 has evolved over the years, and what newly diagnosed people have available to them now has been inspiring. I have friends that were diagnosed recently, within the last few years, and they’re like, “How did you do that? How did you like test all the time, and not be able to always see your blood sugar?” You really just have to deal with what you’re given. People back in the ’70s and ’80s had to go into the doctor to test their blood sugar at all. To be able to see kids today that are newly diagnosed play with a toy bear that can teach them about their T1D makes me smile.

How have attitudes towards Type 1 diabetes changed?

There is just more opportunity to be open about having Type 1. I’ve always been very open about it, but I think with with social media, it has helped so many others to be more comfortable with it, which has had a kind of domino effect. Social media wasn’t huge when I was diagnosed. There was maybe live LiveJournal and Myspace, but now with Facebook, Instagram and Twitter, it is so much easier to not only talk via social media alone, but also to organize meet-ups, and to connect with people who are across the world from you who are experiencing the same things.

Who are some of your role models in the Type 1 community?

Well this first one is actually a two-fold, because I love Victor Garber both in the Type 1 community and outside of it. He is such a talented actor, and I admired him before I had Type 1 and before I knew that he had Type 1. I remember when I found out that he did, I almost breathed a sigh of relief, because he has just killed it with his career. He’s the coolest, most elegant person. I love Crystal Bowersox. I think she’s a total diabadass. She does not let anything get in her way. She’s kind of a badass. Can I say badass? Well… dia-badass!

What are you excited about for the future of Type 1 diabetes?

I’m excited for a cure. I mean, who isn’t? That’s the real endgame. But until that happens, I’m just excited for more community building, more empowerment, opportunities to educate and more chances for people with T1D to feel like, yes, they have this disease, but it doesn’t define them. There’s always a way to live the lives we’ve imagined, with or without this disease. I’m excited for more and more people to realize that.

 



Alexi is a writer, artist and actress in the Bay Area. She studied at the New School University in Manhattan as well as the Lee Strasberg Theatre & Film Institute. She has written for multiple publications and websites such as the San Francisco Chronicle and has been a regular contributor for Beyond Type 1 for many years. You can also hear her voice in two Star Wars films. She has been a loyal advocate for Type 1 diabetes awareness, education and fundraising since she was diagnosed in 2003. She hopes to continue to empower and be a voice for those who choose to embrace Type 1 diabetes as a part of their lives, but at the same time, do not allow it to define them.