Diabetics Doing Spoken Word Poetry with Nichole Acosta

[00:00:07] Rob Howe: Welcome to the Diabetics Doing Things podcast. We've been telling the amazing stories of type 1 diabetics all across the world since 2015, and we have over a thousand years of living with T1D on the podcast. The interviews range from incredible feats to everyday victories, and we celebrate them all just the same. Thanks for listening, and if you want to get involved even further, just send me an email at rob at diabeticsdoingthings.com. Hello and welcome back to another episode of Diabetics Doing Things. We are telling the amazing stories of type 1 diabetics from all across the world. My very special guest tonight is Nichole Acosta. Welcome to the show. I'm super excited that you're here, and I can't wait to hear your story some more.

[00:01:08] Nichole Acosta: Super excited to be here.

[00:01:10] Rob Howe: Great. So, Nichole, tell us a little bit about yourself. And kind of, I know you mentioned to me via email that you were diagnosed your freshman year of college. And I know, you know, for a lot of, you know, a lot of T1Ds, college can be a tough time. I can't imagine how difficult it was getting diagnosed there. But go ahead and why don't you get started and tell us a little bit about yourself.

[00:01:36] Nichole Acosta: Sure. I, like you said, was diagnosed that freshman year and I actually thought that I had the flu. I was feeling really, just really sick. And all my friends were telling me to drink orange juice. So I drank jugs and jugs of orange juice. And that sent me to the hospital. I had been home for the weekend for a doctor's appointment anyway. But when I got there, the doctor smelled my breath and it smelled like acetone, like nail polish remover. So he was like, I got to get you in a taxi and get you to the hospital right now because I think you have diabetes. And that is how I got diagnosed. and I think my blood sugar was around 500 or so and I had to stay there for like three days and get my sugars down. I think while I was processing all of that I was thinking food got me here so I'm not gonna eat so for that first month I wasn't really eating I was kind of pushing food away and it's like not knowing what to do with myself and um like about 13 years later i'm doing much better

[00:02:57] Rob Howe: dealing with my diabetes yeah and i think you know there's a couple things i want to touch on just from your from your story number one a food food is a tough thing i think uh in general um and, you know, food education and people's relationship with food, when it's centered around a diagnosis like T1D, it can be even more difficult. Yeah. How do you feel your education was, you know, you mentioned you stayed in the hospital. Did you feel the rhetoric from your doctors, you know, was positive? Do you remember anything about, you know, what they were telling you and about, you know, the rest of your life and how you were going to adjust? and how did that play into your immediate reaction and relationship with food?

[00:03:47] Nichole Acosta: I remember there was a nurse that was teaching me how to inject myself by using an orange. She would fill it up with water and keep having me inject this orange. And I kind of angrily kept stabbing this orange Like, I can't believe I have to do this the rest of my life because I was actually afraid of needles for a very long time. So to hear that I got to do this for the rest of my life was hard.

[00:04:23] Rob Howe: Yeah. And I think, you know, it's funny that it was orange. You know, there's so many orange juices already popped up like twice in this interview. and right before we jumped on the phone, I had to drink some orange juice to perk my blood sugar up a little bit. I was dipping below 70 a little bit. So it's just, there's a lot of orange juice in the, it must be in the air right now, I don't know. Yeah. And you know, it's interesting, like everybody has different methods and every hospital has different methods of education and teaching, you know, around T1D in particular. So I think like when, when, do you remember what, you know, what your outlook was, you know, when they told you you were diagnosed, like, you know, that's a tough, you know, 19, 20 years old, that's a tough age anyway. You're sort of like feeling your way out into who you are as a person. What was your, you know, immediate, you know, prognosis or outlook or, you know, do you remember what that was like for you?

[00:05:26] Nichole Acosta: i think i just wanted to give up food altogether i i had been a like a pretty big foodie before this happened and um like i said i was just like this put me here that orange put me here and i want to keep stabbing it because that's why i'm here so i didn't know how to deal past that

[00:05:48] Rob Howe: Right. And, you know, I think that obviously like that presents, you know, so many challenges right off the bat. How did you, you know, how did you kind of move through that or work through it? Or were there anybody, was there anyone in particular who kind of helped you through it or, you know, you had in your life that kind of guided you through that process? Or was that sort of just a, you know, did you have to navigate those waters yourself?

[00:06:15] Nichole Acosta: I think I really had to do it myself it wasn't like anyone in my family had type 1 I had an uncle that had type 2 but I didn't really have anyone to guide me that much I was sent to a nutritionist but I didn't feel like they were really pointing me in the right direction I had to learn everything myself and then I remember being on this honeymoon period so I still had a little bit of insulin running through me, I guess. And when I finally was figuring things out, um, that honeymoon period was over. So I felt like I had to learn all over

[00:06:51] Rob Howe: again. Yeah. So frustrating. I, uh, I had, I like, I don't remember exactly the day, but I remember like the period where my, I was like, Oh, my honeymoon period's over. Like, Yeah. Because there's, you still get a little bit of like regulation too. Um, and you know, I felt right off the bat of, you know, managing my diabetes. I was like, oh, this isn't so bad. And then I was like, oh, wait, like it was maybe a year and a half in and I was just having a lot of trouble adjusting to, you know, my lifestyle. I was like, what is going on here? Oh, oh, okay. I don't make insulin anymore great so from there after your honeymoon period when did things start to turn in the right direction for you or I guess in a better direction for you

[00:07:47] Nichole Acosta: I think I've always been a pretty positive person so I couldn't live the rest of my life thinking I'm going to be in a bad situation forever and I'm never going to get better and I can't fix this and I can't control this. I was like, I have to find a way through and keep doing what I'm doing. Like I'm on stage all the time doing spoken word poetry and I couldn't let this stop me.

[00:08:23] Rob Howe: And that's a great, I think a great comparison, right? Like, because when you're on stage and, you know, the lights are on you and everyone's watching you, you know, you gotta, the show must go on. Like, you gotta go on and perform. Yeah, exactly. And this is very similar with T1D, right? Like, you sort of have to put, whether you're burnt out or whether you're struggling or whether you're, you know, doing great, you gotta put one foot in front of the other and just kind of keep trudging through it.

[00:08:53] Nichole Acosta: Mm-hmm.

[00:08:53] Rob Howe: uh talk a little bit about your spoken word poetry um i have and i also want to hear about um you know a little bit more of your social media stuff in terms of like sugar freedom um but you know when i was i was reading uh actually you posted something today uh and you were talking a little bit about your spoken word poetry when did uh was that something that came after diabetes or were you uh always interested in it i have been on stage since i was

[00:09:20] Nichole Acosta: 11 years old. An English teacher just pushed me on stage one day to read this very short poem and I loved it ever since. I did slam poetry which is competitive a little bit. A lot of it really. For a little while and done mostly like the tri-state area. I would say the biggest performance I've ever done is the New York Historical Society. And I had been empowering kids for years, so I couldn't be the one who wasn't empowered.

[00:10:02] Rob Howe: Right. And was that more of a, like, almost kind of fake it till you make it type of reaction? Or, you know, and you just kept pushing and then eventually it clicked?

[00:10:15] Nichole Acosta: Yeah, I think so. So I had to really keep a food diary and see what was impacting what.

[00:10:23] Rob Howe: Yeah. And when did, so, you know, we talked about your relationship with food right from the get-go and how it was a little rocky and difficult to navigate. When did, you know, getting through the poetry and getting through kind of back to you, back to the things that you do in your center, when did it become, you know, your relationship with food get to a better place?

[00:10:51] Nichole Acosta: When I started writing about it, I think it really got into my poems, talking about my health. Because writing was the only way I knew how to deal with a lot of things. So that's what worked for me.

[00:11:08] Rob Howe: And so as part of that process, you're bearing your heart. right you're writing down your your thoughts and feelings and was that you know sort of a cathartic feeling for you and you know being able to pour your passion and emotion into the writing you know allowed you to move forward with you know your your actual life and your actual

[00:11:32] Nichole Acosta: relationship with it yeah I think at first I didn't really want to tell people that I had diabetes um so it was good that I had insulin pens because you know I'd be at poetry events and people would think I'm just taking a pen out, not insulin, so I could hide it that way. And then I got more open about it because I realized that I'm not the only one who has this. And there's a lot of myths and wrong ideas about diabetes and people need to be more aware.

[00:12:09] Rob Howe: Yeah, and the community aspect is a huge part of it. you know anytime you're talking about you know hiding it because it's so easy to just go day-to-day life and manage your your diabetes and not really worry about you know others or the community I was that way and you know I even had a pump and I could hide it pretty well most of the time and it makes it really easy even if you're like having a high blood sugar or you're you know at a dinner or something you just reach in your pocket and people just think you're on your phone you know So, um, it's just a, you know, when you make that decision though, to get involved and kind of open yourself up, um, you know, there's this sort of amazing world back there. What did you, what did you find once you started to open yourself up?

[00:12:56] Nichole Acosta: Um, I found that people were more supportive than I thought they would be. And I kept saying that I'm going to keep sharing these stories with you so that hopefully you'll never have to share it with me.

[00:13:11] Rob Howe: yeah and you know what what types of stories you know when you started to share your your own what were the ones that you remember um you know maybe the first one what was the first

[00:13:23] Nichole Acosta: really personal one that you shared um oh i had a bad hospital experience when i've only fainted twice when I've been on stage after just not eating the right things. I think I just ate a bagel in the morning and that's all I ate for the day. So by performance time, I couldn't, you know, just fainted. And that turned itself into a poem of just being angry at the way that hospital didn't take care of me because it started off with me being in the ambulance and they couldn't put the IV in my arm correctly so no my blood was actually spewing everywhere because they were doing it wrong just that that whole night was was crazy and I never wanted to put myself in that position again I

[00:14:24] Rob Howe: wanted to be in control, you know? Well, and I think too, you know, allowing yourself to be angry is healthy, right? It's okay to be, you know, to really feel that way. Those emotions are, you can't, it's easy to bottle those up, right? And you can, you know, want to deal with it later. But when you really tap into it and say, you know, I'm angry and I want to express myself through that, that sort of has a cleansing effect, doesn't it? Absolutely. And then you realize,

[00:14:57] Nichole Acosta: you know, am I angry because my sugars are high or my sugar's high because I'm angry?

[00:15:03] Rob Howe: Right. You get that, you get in that weird diabetes feedback loop where you're not sure if one is impacting the other or not. Right. Yeah. I want to ask you, do you have, I want to hear some of your poetry. I don't know. Do you have any of it nearby or would you, Would you mind reciting some for the show?

[00:15:24] Nichole Acosta: Yeah, sure. I mean, do you want that angry piece as well?

[00:15:28] Rob Howe: Yeah, I think so. I want to know which ones had a big impact on you. So if it was the angry one, let's hear it.

[00:15:38] Nichole Acosta: I'm just listening to it. This is a self-published book I did in 2013. This is my poetry. This is just after I fainted that one time.

[00:15:59] Rob Howe: Okay.

[00:16:01] Nichole Acosta: It's called Alternative Medicine. There's no urgency in the emergency ward. Brooklyn Hospital must have no awards. There's no urgency in the emergency ward. Brooklyn Hospital must have no awards. Call it a medical practice. Use human beings for practice. Are all the doctors stuck in traffic? Play pin the tail on the donkey. I got a permanent pain in mind. Just make me your voodoo doll. I never felt more stuck in a place full of incompetent witch doctors. Witch doctor knows what's going on here. Attention, all patients, be patient Be it paper cut or decapitated We all get not treated equal Patience is a virtue But you could die in a waiting room Numb nurses don't give a damn About saving you I am not confident this hospital Could stitch up any wound I ain't staying the night I won't play the fool Now we're gonna take you for a CT scan Oh really, I hope you remembered to plug it in Cause this whole night's been nothing But incompetent Stick me with IVs wrong. My blood is spewing everywhere. Stick me six more times for blood work. Got me questioning. Are you sure you work here? No doubt in my mind I had to get out of there. I injected my insulin to get back to normal. No questions asked. She tried to stick me with an IV to push my sugars even lower. If I hadn't been awake to stop her, I wouldn't have been awake. Stop heart. The angels and ancestors and family at Coda Cafe saved me with holistic care Showed me that my heart is here Blood-type poetry, soul set on a sunset, brighter day, and a better me I live to inspire the best of we Never take your health for granted and thank them for my family tree Pour it all out for the ancestors who answered me Eight hours later, test results read High on life and poetry I believe in this art because it was a room full of poets, not doctors, who saved me.

[00:18:07] Rob Howe: Wow. That's beautiful and powerful. Wow. That's incredible. There is a lot of anger in that, but it also felt, it's kind of like the puff your chest out kind of anger, right?

[00:18:25] Nichole Acosta: Yeah. Like, just gotta get it out. to get out of there.

[00:18:29] Rob Howe: So to not take those circumstances that are given to you and really push back. It's beautiful. Thank you for doing that. I was hesitant to ask at first, but I'm glad I did. That was an awesome performance. So thank you for doing that.

[00:18:44] Nichole Acosta: Thank you. I mean, I had a shorter one or later maybe just dedicated to all diabetics.

[00:18:53] Rob Howe: Let's hear it.

[00:18:56] Nichole Acosta: To love a diabetic. It means sticking with her when she sticks her fingers, squeezes blood out, checks her sugar. To love a diabetic means never asking, can I get your numbers? And judging. To love a diabetic means being her sugar freedom when she loses the willpower to step away from the cupcakes. To love a diabetic means embracing the faded constellations of insulin injections across her stomach. To love a diabetic means never telling her she can't eat this and can't eat that. To love a diabetic is to understand she will get moodier than most people. You would be too if you spent the entire day on a roller coaster. To love a diabetic is to be her best friend when she feels like food is her worst enemy. To love a diabetic means letting her share this disease with you so you'll never have to share it with her. To love a diabetic means dropping your fear of needles and giving her a shot full of normal again To love a diabetic is to remind her that Starbucks only has her money in mind Or else they never would have ventured the Frappuccino Remind her that her life is not a guessing game She has to carefully count her carbs and not be lazy because her life depends on it To love a diabetic is to love myself because this disease cannot be controlled by anyone else. If you can commit to loving a diabetic and see her for all she is, maybe, just maybe, I'll love you back.

[00:20:33] Rob Howe: That was great. Thanks. That was a little bit more happy, a little bit happier than the first one. It was lovely. That was so beautiful.

[00:20:42] Nichole Acosta: Thank you.

[00:20:45] Rob Howe: So, and you talked about sugar freedom in that last one as well. So talk about what that is and what it means to you and kind of where it came from.

[00:20:56] Nichole Acosta: I actually don't like sugar-free products. I think a lot of them have a weird aftertaste.

[00:21:03] Rob Howe: Yeah, they're gross.

[00:21:04] Nichole Acosta: Yeah, pretty gross. But I think of it more like I want to be able to control my sugars so that I'm free to do whatever.

[00:21:18] Rob Howe: I love and I try to find that every day. Well, and I think too, like sugar freedom is something that I think gets, gets lumped into, you know, a lot of different things. Like I, I'm pretty closely involved with the whole 30 community. Cause I, you know, I have a couple of pieces of content done with them. I did a podcast about, you know, and that's removing all the sugar from your diet and, you know, declaring freedom from sugar is a big part of that. So people talk a lot about that. But I think, you know, the freedom aspect from, you know, being super tied to a number on a meter about your blood sugar or a CGM. And, but, you know, and then also, you know, like we talked about the sugar free products are gross, they're, they're terrible. They're like, you know, and we can pretend that they're not, but we're not really being honest with ourselves, right and um it's sort of just putting a band-aid it's not really fixing the problem um so for you you know you know finding and declaring your sugar freedom almost had nothing to do with food or even really diabetes right it was it was much more than that

[00:22:32] Nichole Acosta: yeah yeah it was about really just being able to do what i love and not feeling sick all the time I'm not feeling tired all the time, just feeling free. Not that I could eat a whole bunch of ice cream or candy or free to do that, but free to live my life like I used to, but in control.

[00:22:56] Rob Howe: Well, and I think that's real freedom, right? Yeah. Being able to be in that moment and make the decisions that you want to make. And yeah, you know, sometimes I would love to just go to a chocolate fountain and fill up a bowl full of chocolate and eat a bunch of strawberries out of it and not give myself insulin. Right. Like that sounds great. But, you know, it's that's just that's not sustainable. Right. That's just a, you know, a fleeting kind of fantasy situation. Right. And, you know, maybe one day after we get some beta cells put in my pancreas or whatever, maybe I will do that. But until then, you know, it's just, you know, selective times where, you know, you can purposefully say, okay, you know, I'm going to do this because I want to and I have the freedom to because I'm not a slave to something like diabetes.

[00:23:47] Nichole Acosta: Exactly. And then I was also thinking a clothing line possibly starting. It kind of fizzled out, but I was always wearing dresses and not being free to inject myself. I have to, you know, run to the bathroom and do that because there's no pocket there. So I was kind of working with my cousin who graduated art school and she's doing a bit of fashion now and trying to, you know, figure out pockets or slits on dresses so that I was free to, you know, inject myself without a problem.

[00:24:25] Rob Howe: Right. And, you know, that's really all that T1Ds want, right? We just want to feel free and to do everything that everybody else does and, you know, to feel convenient. I have these like Lululemon leggings. They're like the workout tights or whatever. And they have a pocket, they have like a weird pocket on the side that my pump can go in. And so I can, you know, go to the gym and I don't have to worry about my pump just being in my pocket. It's like the best thing. I was like, yeah, like this should be on more stuff. This is fantastic. Absolutely. Yeah. Just feeling normal. Like that, that sometimes is more freeing than anything else. just feeling like you belong and that you don't have to, you know, do things differently than everybody else. Uh, Nichole, I asked this question on, on all my interviews, but, um, I think, I think your answer actually, you know, I'm really excited to hear what it might be. Um, especially because you, you know, you have a certain way with words, obviously. So, the context is important. Like if you, if you find yourself in an airport and they're going to close the door to your gate and for whatever reason, you can't miss the flight. Like you've got to be on that plane. Whatever's waiting for you on the other end is important. And, but you run into someone who has either been recently diagnosed or is struggling with their, their type 1 diabetes. what's the one thing that you would say to them like in that 30 seconds before they shut the door to your gate what do you tell that person

[00:26:03] Nichole Acosta: I'm going to stick to sugar freedom because I mean I didn't think I would ever find it I was this person who thought I could never eat again you know so I would tell them that you're going to find this sugar freedom that you are going to be able to control this diabetes. Because I didn't think I ever would. I thought I was going to be spiraling up and down and never just get it. But it has clicked for me on this vegan diet. And a vegan diet might not work for everyone, but I tried it for 30 days. and it's helped my blood sugars be better because um just because i'm more conscious of what's in things now um but you will figure it out uh what works best for you i love that story because i

[00:27:03] Rob Howe: think too like you know you you were in a place where you felt like you never would find it um And now you have what, you know, in that same kind of thought, in that same frame of mind, what are you most hopeful for kind of going forward with your sugar freedom, like with your daily life?

[00:27:30] Nichole Acosta: empowering others and myself I was actually working at WebMD for the last eight years and now I work at Jumal Health where we empower kids to you know be able to own their health whatever their condition might be and that has had a tremendous impact on me as well um so i got to empower kids with poetry forever and now i get to do this as a day job and it's pretty awesome when you're feeling good i think you're more empowered to take control of your health so when you when you're able to do what you love like you doing this podcast or me working there um i can be in control of what i'm doing yeah that's so uh that's so true uh it's so

[00:28:25] Rob Howe: interesting and like it it's it goes against kind of regular you know the the conformity culture right uh yeah so many people don't do what they love so many people are unhealthy so many people don't know how to change it and or don't want to you know and you know it's just it's interesting to say you know when you when you do what you love you you feel better you do better you you know you are better because you're doing you're following you're true to yourself and you're able to you know and helping people as a part of that as well as is super it's just a great outlook to have. Absolutely. Nichole, thank you so much for reaching out and making this interview happen. You are a very deep, very surprising person, I think. And I'm looking forward to continuing to, I'm glad we met and I hope that you and I can continue to be in touch within the community. And I, you know, have no doubt that you're going to be on some sort of I'm going to see you on some diabetes site, you know, doing some slam poetry somewhere because you are a true artist in every sense of the word.

[00:29:42] Nichole Acosta: Thank you. I appreciate that. I think we'll definitely cross paths again and collaborate in some sort of way.

[00:29:50] Rob Howe: I would love to. For those for those of our listeners who want to get connected with you on social media or online, what's the best way to do that?

[00:29:59] Nichole Acosta: um you can find me on instagram or facebook at Nichole Acosta um you can reach out at at jimo health or jimo connect um great resources there uh yeah pretty easy to find

[00:30:15] Rob Howe: great well we will definitely include links uh in the show notes to all your platforms and again thank you so much for making the time and uh we will for sure be collaborating on something in the future I just I can feel that for sure yay