Episode #124: Melissa Aives and Danielle Scaramellino
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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In this very special episode, I'm interviewing Melissa Aives and Danielle Scaramellino, who I met on the first day of freshman year at Northeastern University and have been best friends with ever since. In fact, when this episode airs, the three of us will be in Portugal celebrating our 20th friendaversary!
Eleven years ago, I faced a life-threatening surgery that would introduce my friends to a world of uncertainty and newfound knowledge about my health. Despite knowing each other for nine years at the time and living in close quarters in our early years together, Melissa and Danielle had never experienced this side of me. It was a pivotal moment that required adjustment and a redefinition of our friendship dynamics.
As the friend with an invisible illness, I've learned the importance of openly and honestly asking for support. This vulnerability deepened our connection and allowed Melissa and Danielle to better understand my needs and challenges. Through our story, you'll learn valuable lessons about adjusting to new phases, embracing vulnerability, prioritizing health, and building a solid support system. It serves as a reminder that true friendship endures even in the face of adversity and that our bonds can grow stronger through understanding and compassion.
“It was a huge adjustment for all of us of just going, ‘wow, this is a whole new phase in our lives.’”
Reasons To Listen:
What it was like for Melissa and Danielle to learn about my illness for the first time, despite knowing each other for nine years and living in close quarters.
Understanding that sometimes supporting your friend is being there, listening, and adopting a team mentality to weather the more challenging days and emotions.
Learning to ask for support honestly and directly as the friend with an invisible illness and how that can deepen your relationship and connection over time, despite any distance in location.
How to make yourself important and prioritize your health and needs so that you can make the best decision for yourself and, ultimately, your friendship.
Questions to ask yourself and your mutual friends to create the strongest support system possible for the friend with an invisible illness and the friends without one.
“If you don’t know what to do, it might just be easier to say, ‘What do you need from us? What can I do for you in this moment?’ And if it’s nothing, it’s nothing.”
“When you give people a chance, most of the time they show up, and if they don’t, then you probably don’t need them in your life.”
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Harper Spero (00:04):
Made Visible helps people with invisible illnesses feel seen and heard. It provides a platform for people who seem fine but aren't to share their experiences. It also helps to create a new awareness of how we can be sensitive and supportive to those with invisible illnesses.
Harper Spero (00:26):
Please note this podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a license or registered healthcare professional about your individual condition and circumstance. Hey guys, welcome to another episode of Made Visible. I'm your host Harper Spero and I'm so glad you tuned in. Today is a really special episode. As I'm interviewing my two best friends, Melissa Aives and Danielle Scaramellino. We met on the first day of freshman year at Northeastern University in Boston and have been best friends ever since. When this episode airs, the three of us will be in Portugal, celebrating our 20th friendaversary. Welcome D & Mel.
Melissa Aives (01:12):
Hi
Danielle Scaramellino (01:13):
Hey.
Harper Spero (01:15):
<Laugh>. There's gonna be a lot of nicknames in here, warning to the listeners. So let's start off Mel, who are you, where are you from and what do you do?
Melissa Aives (01:28):
All right. I'm Melissa or affectionately known as Mel or Cookie or Princess. And I live in New York City on the Upper West side and I chased around my almost two year old and I am a nursery school teacher in Midtown East
Harper Spero (01:45):
D
Danielle Scaramellino (01:46):
Hi everybody. My name's Danielle, also known as D, D$4Life, D$yo, sometimes <laugh>. I am from New York. I grew up in Westchester in PE in a little town called Peekskill. Went to college with these two lovely ladies. I currently live in California. I work at a nonprofit based in New York City who supports New York City public schools.
Harper Spero (02:13):
I love it. So we're gonna dig right in and we're gonna take it back 11 years. When I first found out that I needed to have surgery and was going down to the N I H and learning about all this new stuff in my life and in my health that you had never known anything about, what do you remember about that time and when I informed you that I had an invisible illness that I hadn't told you about for all those years, do you have any memory of that time?
Melissa Aives (02:47):
Well I remember when you went to the NIH and they found the mass in your lung. That's sort of like the start of when we knew you were sick and I think we didn't really know what to do with the information because we had known you for nine years already and like there were little things that we knew, you know, you would get colds that were worse than normal and like, you know, things in that respect. I mean we lived in close quarters with you so we knew there were always lots of vitamins and we knew there were always like those sorts of things but you never wanted to talk about it and we didn't know there was something to talk about really. So, so when you came back and said I'm gonna have this like potentially life-threatening surgery or at least I was just taken aback with whoa, what do we do? Where did this even come from? Because it wasn't even sort of part of our friendship at that point. We just didn't know that was a part of you.
Danielle Scaramellino (03:40):
Yeah. And just to add to that, I think you are someone from the day I met you that has always just brought with you this kind of magnificence, like this presence. You're always so energetic and like so kind of all encompassing. I never ever in our entire friendship like saw you as someone who was sick. You were always just so bubbly and energetic and like just brought the fun and you like you still do. To this day I feel like it didn't hit me at all. Even right before the surgery I just assumed oh this is something that you have to do and you're gonna do it and you're gonna be totally fine. And then I think yeah, seeing you in the hospital I think was the like the first signs of like fragility was a little bit of a wake up call for me.
Harper Spero (04:33):
It's interesting, I remember Mel coming when I was first trying to walk right after, I don't know, a few days after surgery and I remember Mel being there and just feeling so defeated like how is this my life and how is my best friend sitting here like watching this happen? What do you remember about that Mel?
Melissa Aives (04:52):
I didn't know what to expect I guess when I came in to see you cuz at this point in time we've had a lot of friends who've had a lot of different surgeries and a lot of things. So it feels different to go back and think about 11 years ago when you were the first friend that kind of went through something like this. I remember you trying to get up and like having to turn away from you cuz I was like what? This isn't the person I've known for all this time. So I remember just like trying to hold my breath and saying to myself like what Dee said, like this is a thing that you're gonna get through and like we're gonna be done with it. Not knowing that this was like an ongoing thing quite yet, this was really the first that we knew.
(05:31):
So I remember leaving the hospital and sitting outside and like needing a minute. It was weird. It was just so strange to see you that way. But I did run to your apartment after that and like set up like this ridiculous welcome home situation. I think I was with Gotti, I think we did that together and we like made a sign and we brought like it was the only thing I could think to do for you was create like something that was awesome when you got home and then you didn't come home for like 10 or 12 or even, I don't even know how many days it was until you came to the apartment. I was like, oh my god the flowers are dying <laugh> like everything's gonna be everywhere. But like as a, as your friend, I'm like what do I do in this situation? I have to do I, I feel like I had to like run to do something for you and that was the best I could think of.
Harper Spero (06:19):
Yeah, you know what's interesting is I didn't know that this would be an ongoing thing either and that's what's so complicated about this is it wasn't like, oh I just went in and had this surgery and recovery took a little while. It was, oh my god, this is gonna change your life and there's gonna be a lot of challenges along the way, which I don't know if anyone knew that medically either. So it was a huge adjustment for all of us of just going, wow, this is a whole new phase in my life, in our lives. As Danielle said, I was this person and then here's this whole other burden to take on. So I'm curious to hear that's 11 years ago. What's it like to be on the receiving end when I update you about something related to my health? Because you've heard a lot of stuff over the last 11 years.
Melissa Aives (07:09):
There are parts of your health that you are forthcoming and talking about and there are other parts where you're like, I want, I want you to know these things but I don't wanna talk about it. So there's like this like balance and sort of, I don't wanna say we tiptoe cause it's not so much tiptoeing it's, it's trying to navigate how much you need from us versus how much you just need us to be on the other end of the phone. What do you think Dee, is that accurate?
Danielle Scaramellino (07:39):
Yeah, I think, I mean my first reaction to that question is that I feel really, I just feel so much for you harp, like the amount of stuff that you have to deal with that you know, I, I've had my fair share of like, you know, health issues especially in like the last few years. But the amount of stuff that you have to deal with and how like frequently and like how
Melissa Aives (08:03):
Daily,
Danielle Scaramellino (08:03):
How much daily like it impacts your day-to-day life. It's, it just feels so unfair. I just feel really angry that you have to go through it, you know, and feeling all of the the feelings of like really wanting to be there for you. But that means like what Mel was saying where sometimes that means just listening. Sometimes that means being like your cheerleader. Sometimes that means not saying anything and just being there. Sometimes that means sending you a box of you know, REOs pasta sauce. It's figuring out kind of what you need and you know, trying to be as supportive as it can be. But mostly I'm just pissed off.
Melissa Aives (08:41):
Yeah, I was gonna say sometimes it means calling Dee to figure out how to proceed. Dee and I sometimes we have kind of our, our back channel occasionally to say okay, what does she need right now in the moment when we are not sure what you need? Because like you're tricky as you're a complex emotional person and sometimes you present very strong and sometimes you present beaten down and sometimes you are in the middle and Dee and I I think are a team in figuring out what you need and we've gotten better at it over time I think. But I use her and she uses me as support for you, which is very helpful I think. And when one of us isn't there, the other one is and I think that's helpful for you also. We're a tripod the three of us.
Harper Spero (09:32):
Yeah, I think that's a really good point because if you didn't have each other, sure you have your partners, you have other friends, but we are really a tripod and to be able to lean on each other. And I can say that about other situations with both of you in coming to Mel to tackle things with D and vice versa. But it's helpful to know that I know that I am not easy with this stuff because sometimes I'm like, here's everything you need to know. But most of the time I need a listener. I need someone to just be there and to listen and not problem solve because I typically like to do that on my own even though I know it doesn't benefit me all the time. But it's my natural tendency. I wonder how you determine all these years in together and individually when to react a certain way. Because if I'm not saying to you, I just wanna tell you this story, don't respond or I don't want feedback or I don't want advice, that's one thing I'm telling you what I need, but when I don't, how do you make that decision?
Danielle Scaramellino (10:40):
It's so special what we have. I mean we have the benefit of a of 20 years of knowing one another. So you know that's, that's a superpower I think you know when you meet friends in college it's a journey to learn how to like become emotionally vulnerable with them. I think that happened pretty quickly with us. I typically just let you lead and then try to parse kind of what I think is the best response. And most of the time it's just li listening. I mean you're an incredible self-advocate for yourself and you're really smart. Nine times outta 10 you know what you need to do next. It's not like figuring out what to do next. It's more just like processing the motions of it all. And I hope I just try to be a good listener on the other end of the phone. It's also really hard that we live apart now cuz it, I think it used to be a lot easier when we could just like go lay on each other's couch and like be there physically now that we are apart it, it requires a little bit more like intentionality.
Melissa Aives (11:42):
Yeah, the, the part that we're all like in different corners of the world is, has been a challenge I think for all of us in a number of ways but, but when you get certain types of news or whatever it may be, it, it's definitely harder to not be able to just come over. I used to be really uncomfortable with the silence on the phone. I think sometimes you just need us to sit in it with you breathe and like you just know that we're there. And I think that is something we've learned over time and that was pretty much the same when we were together. Like it was to sit on the couch, it wasn't to speak so much, it was like, it was literally just to sit there. It could have just been music, it could have been a terrible movie and like it was just to like be over there and like hang out with you.
(12:26):
Now I used to like feel like I needed to encourage you, you know, especially on the phone like harp, we'll figure it out, we'll do this, we'll do that. Ship sailed a long time ago knowing that we're not gonna have the answers on the phone at that moment. And there are so many complexities to what you're dealing with just to say, okay, I hear you. How do you feel really shitty? Or I'm okay about this or whatever it is. Okay, is there a step that's next if not okay, like there's, it's a lot of just I hear everything and whatever you need to say to me and get off your chest is we are safe for you to do that for. So I think we've, we've learned it's, it is a journey cuz we did not always get it right at first. There were times where you had told me on the phone like, I just need to go. Like I was too encouraging or I was not encouraging enough or I said something that, you know, made a good situation worse or a bad situation. You know, like it's, we're not perfect and that's friendship, that's relationships, that's love. So we sort it out when we can. We do our best.
Harper Spero (13:37):
I agree, you guys do an amazing job and I think I, as I said before, I am not easy in a lot of those situations because I am not always so blunt in saying this is exactly what I need or how I need you to support me. I try to get better over time, but I do think that you guys learn from those behaviors and I'm very selective of who I tell what and when. Less to you guys, but to other friends because of how people react. And I think because we are 20 years in, you know, me well enough to know how to figure it out and how to problem solve if there's problem solving needed. But I think you bring up a really good point, Dee, of living in different places, how this has all shifted in such a major way. Our communication is mainly through texting and it's through, you know, weekly scheduled calls and you know, sporadic other ones. But ultimately the times of us sitting on the couch or going out to dinner or going and meeting at a bar are behind us, but hopefully ahead of us in other ways. And, and it's a huge shift. So I wonder how you would say our friendship has changed since the last 11 years. Obviously lots of things have changed in our lives, but how would you say, if at all, our friendship change related to my health?
Melissa Aives (15:04):
I don't really think it's changed that much honestly. <Laugh>,
Danielle Scaramellino (15:08):
I would agree. I I I don't think our friendship has changed that. I mean I think it's grown deeper in some ways. We're really kind of connected to each other's lives on like a deeper level. I think harp you've changed in ways that are incredibly empowering. Like your focus on your health and what, and like your focus on living the best life that you can live and like making decisions that set you up for that in like really intentional ways. You really are taking care of yourself. And that I think has had positive, you know, impact on me. I'm better for that <laugh> because I see like a really good model of someone who takes really good care of themselves and really prioritizes themselves and their needs.
Melissa Aives (15:59):
Well she's also freaking nag if you don't do the things that are
Danielle Scaramellino (16:04):
Yeah, <laugh>
Melissa Aives (16:04):
Better for you and she'll remind you to do something 48 times and if you don't do it, she's like so annoyed that we haven't done it yet. And yes, it is certainly positive but equally as annoying. But you know, positive
Danielle Scaramellino (16:20):
<Laugh>,
Harper Spero (16:23):
I knew, I knew something like that would come in there. So that actually is like exactly the question that I was leaning towards, which is has my health or the way in which I manage my health impacted the way you manage your own health.
Danielle Scaramellino (16:37):
I think it's really empowering, like I said, the the way that you prioritize your health and your needs. And as someone who is in the process of unpacking my own baggage <laugh>, I think that is a journey. You know, it, it doesn't come naturally to a lot of people to, you know, say I am important and I need to do this thing for myself and to be intentional and make those decisions for themselves. And so I think that that's really awesome and I've definitely like benefited from like having you around sometimes, like Mel said, you can get a go a little overboard and start cracking the whip and that's doesn't always have the intended outcome that you're seeking. <Laugh> sometimes that can backfire, but yeah,
Harper Spero (17:37):
I think that's a lesson for me to remember to practice what I preach because I don't like being given medical advice
Danielle Scaramellino (17:45):
Mm-Hmm <affirmative>.
Harper Spero (17:46):
But because of all that I've been through, there are certain things that I feel that I'm knowledgeable about and want to share. And I've talked about this on the show before because I think it's such an important thing to address that I have work to do for sure on this. But I, I don't wanna say I'm the expert, I'm the expert in my body. I'm very clear on that. But there are things that have worked for me that I want so badly to share with people, but I'm attached to the outcome as opposed to here's some information, here's some knowledge, do what you wish with this, but I care as a problem solver and as your best friends for there to be a good outcome too.
Melissa Aives (18:28):
You are certainly a wealth of knowledge when it comes to self care and health care as in acupuncture and all these, all these other kind of holistic ways to deal with things versus medical ways to deal with things. And you never preach like, you know what the answer is. Like that's kind of one of the great things about you is like, people have tried this or I've tried this and it's always coming from a place of concern and it's always coming from a place of wanting to make us better and to feel better. But you're a pusher, you're such a pusher sometimes man <laugh>, you know, and sometimes we're like, okay harp and like sometimes you know, by the third or fourth time you're like, you're not gonna do it, I'm gonna just stop it. And we're like, cool, that would be great. But always from a good place and it's always about making us better. So it's never unwanted. It's just, you know,
Harper Spero (19:26):
Leave us alone.
Melissa Aives (19:27):
Leave me alone. Sometimes I'll, I'll get there when I get there. You know, I, I'm a procrastinator, I, you know, I don't like to spend money on certain things and you're always there to tell me it's okay to do it for myself. It's okay if I'm gonna feel better and that sometimes is what I need. And sometimes I pretend not to hear you, but that's friendship <laugh>. So
Danielle Scaramellino (19:48):
Yeah, I think harp you, you are like the master problem solver of problem solvers. Like you hear a problem and you're just like, well have you tried this and have you tried this and have you tried this and have you tried this? That's your default. You know, like that's like your, the first place that you go and you know, just like we were talking about before, like sometimes you know, that's not what the person needs to hear and my, my default is to kind of like maybe be too passive, like just like be kind of in the background listening and like sometimes you need me to be more available, present, like get offering, talking, offering stuff. And like relationships are all just like learning how to balance your defaults with other people's defaults,
Harper Spero (20:32):
<Laugh>. So to go back to the concept of being a support system for me, what do you do if you don't know what to do aside from call each other?
Danielle Scaramellino (20:42):
I mean sometimes we ask you how can we be helpful? What would be supportive right now maybe we should do that more when we don't know. Cuz you know, I think you are not afraid to tell us when we haven't done something that you wanted us us to do <laugh>. So that's a, that's a good thing. You can be very direct. I mean it's, it's, it's, I think ultimately it's a good thing for all of us instead of maybe waiting for that, like just asking up upfront would be like a better, better way to do it. I
Melissa Aives (21:14):
Think she's also gotten better at just doing that upfront anyway.
Danielle Scaramellino (21:17):
Yeah, yeah, yeah, yeah.
Melissa Aives (21:19):
Over the course, you know, of the last 10 or so years I think you've gotten, I mean we've said a lot, you advocate for yourself, but like with us you'll just say, I'm just gonna talk and then I don't wanna talk about it. And it's, you know, that's very clear and we're very respectful of that and you've gotten so much better at that. I'm with Dee like sometimes if you don't know what to do, it might just be easier to say, what do you need from us? Like what, what can I do for you in this moment? And if it's nothing then it's nothing and, and that's it. Because a lot of the times it's just nothing.
Harper Spero (21:50):
It's actually not nothing. Nothing
Melissa Aives (21:52):
Is not nothing. Yes, I know. Yeah. You're, yeah,
Harper Spero (21:56):
It's listening. It's listening and that is a huge, huge skill and I think it's such a reminder of the value of listening. I went to a workshop over the weekend, I haven't told you guys about this, but I went to a workshop over the weekend where we were, we were given five questions in five minutes and we were partnered up with someone and the person that was speaking spoke for each minute for each question and the other person just had to listen and not react and not make facial expressions and not put their hand out and not engage in any way aside from active listening. And it was five of the most powerful minutes of my life with a stranger in a workshop where we were both hysterically crying because we just were giving each other the attention that we needed and being completely present with one another.
(22:53):
And I could have gone deep into questioning more things about what did she say and blah blah blah. All that mattered was was that I was there to be there with her and vice versa. So I think it's a huge lesson to listeners, to you of being a active listener is such a powerful tool. And most of the time that is all I need because to your point d, I know I'm a good advocate for myself and I often don't need other people's guidance in making decisions about my health. I just need the moral support which you guys provide. So, well
Danielle Scaramellino (23:32):
I wanna do this workshop. Sounds awesome, <laugh>.
Harper Spero (23:36):
We gotta get, we gotta get her to do it virtually then. So I thought about this yesterday and wondered what it was like for you to be my friend during the height of Covid because it was such a time where it was a reminder that I was so high risk and I was in a different category than most people. What do you recall of that and sort of realizing how serious it was for me?
Melissa Aives (24:09):
Covid sucked. I'm just remembering like the first time I got the okay to walk with you or sit on the driveway I think was the first time, and I don't even remember how long in that was. And maybe by the end of the summer of 2020 where like, I think it was so warm.
Harper Spero (24:29):
I think it was earlier than the summer.
Melissa Aives (24:30):
Yeah. Oh I think you might be right actually because Luca was born and Luca came over. So you're right. So it was a few months in, but knowing that you had left the city you were out at at the house and you, we were all in a bubble, but you were in like a double bubble. You were in like extra isolation. I think I was grateful that your parents were part of that bubble. So you weren't by yourself that, so that was ticked off right away where like you weren't gonna stay in your apartment by yourself, like you made the decision to be out with your parents and like that made everything feel better. But knowing like we weren't gonna be able to get to you for a long time was really challenging. Of course we know it's gonna be worse for you. We always also think like, we don't really know how it is for you.
(25:22):
I think the acknowledgement of saying like, we know, but like we're not gonna feel what you feel about this. So like whatever your feelings are around this, we just have to be respectful about it. And like when people give you shit for not going outside or not wearing your masking this or not, we're like, you do what makes you feel good. If you don't wanna touch the boxes that come in from Amazon, don't freaking touch 'em. Do only the things that are gonna make you feel like you are safe and you are going to continue to be safe when this is like a super intense unknowable time. But I do remember coming and finally getting to sit on the driveway, I don't even know how many feet apart, we were like at least 30. I would say we were maybe 20, at least 20 feet.
(26:08):
I don't know if it was 30, it was probably about, it was probably about 20 otherwise we would be screaming to each other. And then the next time I came, we walked on opposite sides of the street and we did that I think all summer then we were just on opposite sides of the street. But like Dee had a baby in the middle of that that like harp and I were, we were like in a triangle where, you know, I was 23 from Harper who was 20 feet from the baby and from Amy and from Dee. And it was just like, this is how we, we live our lives. And it was, it was to keep all of us safe, but it was so to keep you safe and it was to keep Luca safe at that moment. But even if we were just the two of us there, like it was so to keep you safe, it was like, I am not gonna be the person to burst your bubble. Like I'm not gonna do that. I'm gonna respect any boundary you throw at me. It was terrifying. We were terrified for you. We were more terrified for you than for ourselves.
Danielle Scaramellino (27:02):
Yeah. I think like of the two people that I, that I was most terrified for one was my new baby girl and the other was you harp. Yeah. I mean I, I remember pre covid feeling, you know, there were times when you would, when we would talk and you're, you would call us up in the morning and you'd be like, yeah, I like coughed up blood last night. And like, I don't know what happened. You know, nobody knows why and like I have to go to the doctor and that was terrifying. And that happened like all the time, you know, like in the beginning
Melissa Aives (27:30):
Or your legs would get really swollen. Yeah. Was the other weird thing that kept popping up
Danielle Scaramellino (27:34):
Our whole f you know, friendship was that. And then so being like already scared for you and then with Covid it was like, this is like a fucking respiratory disease that like is killing people, you know? And it was really, really scary. And I, yeah, like Mel said, I was just so happy that you had a place that you could go where you could be outside and you could walk and you could, you know, still be with your parents and like being you, being you, you know, you make the best of it. Like wherever you are. Like I remember like deep in covid you would call us up and you always had stories about like walks and like the drama about like what was happening, all the houses in the neighborhood and like who was like yeah walking with who and like it was just hilarious. Like you, you kind of like make good stuff wherever you are, you know? That's a strength of yours. Like you need that going through all the things that you've been through. But yeah, it sucked having a daughter and not being able to share her with the two of you. That really sucked a lot. All of like the hopes and dreams of new baby hangouts. Yeah. They just went away really quickly and at that point it was just like, okay, well let's, how can we still like be together without like being together? I
Harper Spero (28:55):
Think we did the best we could with that. Yeah. Virtually and in person and trying to hang out as much as we possibly could that we could be there for you in that situation also. Cuz you had a March, 2020 baby. Like it's one of the craziest things ever. I talk about it all the time. So I'm curious to know, what have you both learned about invisible illness in me having one in you being my friend in knowing that this podcast and business exists? What have you learned about it?
Melissa Aives (29:29):
Because it's invisible. You have no idea who is going through what <laugh> No clue. You don't know what people are dealing with on a regular basis. I think we learned from you that things can be really difficult and that you personally are wildly resilient. I don't know how you sometimes figure out how to get past some of the situations that you've been in. Thankfully you've gotten past many hurdles of this illness that you've been in, but the, the, the resilience that you've shown is just the most powerful thing. And I, and from listening to obviously your podcast and, and knowing and your writing workshops and all the things that you've been doing in, in that community, how resilient people have to be when they're kind of in this situation and how unfair, you know, the cards you're dealt can be. Sometimes
Danielle Scaramellino (30:33):
I think I've learned that there's still a lot of research to be done and like when you're kind of on the fringe of like what's happening in science, like where there's like not a lot of evidence and there's not a lot of research and like you just have something that's really rare. Like what a challenging place to be because there's not a path for how you find answers. You know, it's like a lot of like what you've done harp with your, you and your mom and your dad, like you've like stitched together this like network of people that wouldn't have happened naturally without you just like pushing for it and like finding all of the people that you can who might know about something and then you've created a network that wouldn't have naturally existed in the system because you've been able to like self-advocate. But you know, that's not a given for a lot of people. And so I think it's your work is to like raise those voices and to like make through your story. You can like create those pathways for other people, which I think is amazing. I
Melissa Aives (31:40):
Think that's like the work of your life right now. Really.
Danielle Scaramellino (31:43):
Yeah.
Melissa Aives (31:44):
You always tell us there's these people that you know are, are nowhere near a big city and have no idea about the N nih and like how do I get, you're, you're always thinking about the greater good and how to pull them in so they can receive what you've gotten to receive. And the more people that come into that, the more research goes into what you're dealing with and what other people are dealing with. And you don't just focus on your own stuff. I mean, you have people on your podcast that have a, a whole number of different things and it's just the awareness I think is something that you do so well. Even if it doesn't benefit you, it will benefit someone. And that's pretty special that you can put that out there. And your networking skills are beyond, so like, I, I don't even wanna like call the doctor up and you're like emailing people for me, for my stepson to get some like, you just like are so proactive and so ready and willing and that's always been you, that's not new, it's just this is like focused differently. This is focused in like a pretty amazing intentional, you know, human serving way. You're pretty cool. You're pretty awesome.
Harper Spero (32:59):
Thanks guys. I appreciate that. Ooh, it's a lot to hear this. I have to say. You're
Danielle Scaramellino (33:05):
All right. I mean you're fine
Melissa Aives (33:08):
Today. You're fine.
Harper Spero (33:11):
So knowing that I spent the first 27 years of my life hiding my health and telling nobody and not sharing with anyone and nine of those years being, you know, friends with you, what would you say to someone who is listening to this podcast who's hiding their illness from their friends or loved ones?
Danielle Scaramellino (33:34):
I think the obvious thing to say is, you know, give people a chance. Like there's probably a lot of people in in their lives that wanna show up for them and, and don't know that that's needed. But I know it can be scary to like put yourself out there in a real way with people. You know, so much of like of our culture is just like presentation. I think when you give people a chance, most of the time they show up and if they don't then they, you probably don't need them in your lives.
Harper Spero (34:05):
What advice would you give to friends of people living with invisible illness?
Melissa Aives (34:09):
Listen all the time. Always answer the phone.
Danielle Scaramellino (34:13):
Yeah, listen and, and show up. You know, like harp when you were first doing your, you know, your immune deficiency walks and stuff like yeah you know, we were there, you know like and like we knew that that was important to you. You told us it was important to you and we went, we prioritized it, you know what I mean? Like that's what you do for people that you care about and like when you don't or when you can't say you're sorry, you don't have to be perfect all the time. Like I know that I've not always been there for you harp in the way that you've needed. Say you're sorry and like do better next time.
Melissa Aives (34:46):
Also like when you fall off the radar check in I think checking in with you just like sometimes I just send you texts and I send 'em to D two but like, you know, if you've had a particularly hard week or whatever it is, like sometimes you know, you'll come across my brain and I'm like, I haven't talked to Harper like a day and a half and then I'll just write love you just like you're in my mind right now. You know, like I just am thinking about you and that leaves, I think that leaves you or you know, if you're a friend of somebody who's going through something gives them the opportunity to say, oh you're here so I can lean on you. And like that's something that as a friend is the easiest thing to do I think is just to say, Hey how you feel today?
(35:27):
Or even just like I love you is like the the easiest thing cuz you're on my brain all the time, right? So like my talks about both of you on a regular, so like it's just like, you know the it, it's easy in that moment to say to somebody, I'm thinking about you and it gives any, you know, it gives the opportunity for for you to come back and say I'm struggling or I'm okay right now. Or whatever it is that you feel like saying. Whether the conversation is one more text message or if it becomes a, you know, a whole chain for the whole rest of the day, whatever it may be. I think checking in is crucial.
Danielle Scaramellino (36:09):
Yeah, you're both really good at that.
Harper Spero (36:11):
Thanks de I actually think it's like at the top, top, top at the list for me. It's something that's so valuable and I would honestly like my recommendation to you slash listeners is the reminder that you are there. I don't even think the question is as helpful. I think the you're really good at this smell the love you miss you. Hi. There are certain type of text that I know exactly what the intention is and it goes such a far way and I think it's such a reminder to listeners as a patient living with an invisible illness or a friend or family member to be present to people and just remind people that they're there because as we've discussed this whole conversation, you can't solve my problems. You can't fix my health. And Danielle you talk a lot about like, I just wanna take you both take this, you both say this often, I just wanna like fix your body. I don't want you to be going through this. You sent me a card when I was in the hospital that said, dear Harper's lungs, be better at being here. You're better
Melissa Aives (37:24):
Being here. That's right <laugh>.
Harper Spero (37:26):
And it's a saying. It's a saying that, you know, dates back to our early twenties but it was relevant in this time. And I talk about it all the time because it's, it's also humor, you know that's a another aspect of it is we like to have fun and be playful with each other and there's something really wonderful about infusing humor in all of this and I think that's really important. Anything we didn't discuss that you guys like now that we're in this conversation you wanna bring up?
Melissa Aives (37:58):
This is the most serious conversation we've had about this ever. Like you're talking about humor and I'm like we're not this serious this often. I
Danielle Scaramellino (38:07):
Think it's good practice. We need to make some noises.
Melissa Aives (38:09):
No, I think this is good practice. I think it's like, I don't know, this is just such a, for the three of us, this is like a pretty intense conversation.
Danielle Scaramellino (38:17):
Yeah, I was gonna say that. We should make some noises or something. Something pants. <Laugh>.
Melissa Aives (38:26):
Sit down. Sit down.
Danielle Scaramellino (38:28):
<Laugh>. Oh my god, I'm so excited to see you guys in a few weeks and to like be present together for more than like a dinner. Yeah, like a sporadic dinner. It's gonna be awesome.
Harper Spero (38:42):
I can't wait. I appreciate you both for saying yes with exclamation marks when I said are you open to doing this cuz I honestly wasn't sure how you would react but it means a lot that you guys are willing to do this and have this conversation. It's just a reminder of how you show up for me and I think it will help so many friends out there who don't know what to do. And I asked a few friends what questions they had for you and they were so consistent. I kept getting the same questions of people just wanting to know how to best be a support system and you gave so many good tips here. So I love you both more than life itself and I can't wait to be in Portugal together. And thank you for doing this.
Danielle Scaramellino (39:29):
Of course. No problem. Of course. We love you too.
Harper Spero (39:33):
And typically on this podcast we end with asking people where they can find the guests, but these are two not really active on social media. People <laugh> that are not really worth following. No. So we're just gonna leave it at this. If you want more, if you have more questions for Mel and d ask Harper, feel free to,
Danielle Scaramellino (39:54):
Yeah, don't, don't email me or DM me this cause I won't see it. This is the
Melissa Aives (39:58):
First time I've used a computer in like weeks. I, you know, I don't,
Danielle Scaramellino (40:02):
I think my voicemail has been full on my phone for like seven years.
Harper Spero (40:08):
Not surprising at all.
Melissa Aives (40:10):
Point made right there.
Danielle Scaramellino (40:12):
Yeah.
Harper Spero (40:13):
Contact me if you have questions for them or you want to do another episode with more information. I love you both.
Melissa Aives (40:20):
Love you.
Harper Spero (40:25):
Thanks for tuning into Made Visible. We hope you learned about something new today. If you enjoyed this episode, please take a few minutes to subscribe, rate and review the show on Apple Podcast. Your support means the world to us. Visit made visible stories.com to check out our writing workshops, corporate offerings, and more information that can help you in navigating life with an invisible illness. Follow made visible stories on Instagram. See you next week.