In this second installment of Lauren’s interview with Ariel, we dig further into his conditions and lifestyle: what his advocacy work means to him, his journey through the workforce and struggle to find employment with disabilities, his experience as a service dog handler, and life with thyroid disease, bipolar II, borderline personality disorder, endometriosis as a gender-diverse individual, and chronic pain. He emphasizes that these experiences are not unique to him – but that he is privileged to share his unique experience. (Again – if you hear dogs barking in this one, it’s just Caliban’s buddy Blue giving us a shout-out!)
Join us as Ariel shares…
- what a typical day is like for him
- that he struggles with agoraphobia
- his need to connect with nature
- what it’s like to lean on others as a Spoonie
- that weather changes can trigger his symptoms, and force him to focus his work inward rather than outward
- the expansion of his advocacy work
- his background as a college instructor, why he loves academics, and how his work as an educator influences his advocacy work
- what his advocacy work means to him
- how poorly our working world is designed for us – and the lack of accommodations and opportunities available, especially for disabled individuals
- factions within the disability community – but how the disability community is, however, also one of the most polite out there
- an examination of his childhood development, and how it has influenced who he is today
- his experience of discrimination when out in public with his service dog, Caliban
- that he used to use mobility aids full-time – and now his disability markers are far less visible
- that he lives with additional diagnoses, but chooses not to discuss them because there are already great advocates for those conditions
- his advice for other Spoonies or individuals confronting gender identity issues
- the importance of finding community
- the importance of his changed relationship to food – from dysphoria to nourishment
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: So can you talk us through … if there is such a thing as a typical day … what a typical day looks like for you, as you manage the various symptoms of your conditions?
Ariel: Right now, my typical day is probably fairly boring and grim to the average person. But also probably pretty regular to most of us here in this community. I've tried to be much more active in my lifestyle. And that most certainly shows in the types of pictures that I've been able to take and post on social media. Earlier in the year, I was outdoors more often.
I love the outdoors; I love being outside. Even though I still struggle with agoraphobia in the context of urban spaces, something about the rural outdoors and disappearing into nature is very comforting.
Probably because I have that assurance that I'm not going to see another human being or hear their voice for miles around. But as the weather has changed and as it's gotten hotter, I can't do that as regularly.
Lauren: So you’re heat-sensitive still?
Ariel: Oh, exactly, I'm very dependent on other people to be able to take me places because I haven't driven my own car going on 10 years now at this point. And I can’t rightfully ask people, can you wake up at 4am to bring me to the walking trail at 5am so that I can go around the loop until 6am, and then come back before the sun starts to rise and immediately escalates up to the hundreds. That's just not feasible and reasonable. So I've been fairly landlocked since then. And with the change in weather, my symptoms have been largely aggravated. If you're not very intimately familiar with Florida, summer is our storm season.
Lauren: I actually kinda love it! It rains all the time. But it's kind of refreshing.
Ariel: Oh, it can be absolutely refreshing. I love the smell of rain. I love the sound of it.
But that change in the barometric pressure and that dampness is the worst on my joints. Its the worst for my migraines. I am pissy, I'm symptomatic. I'm heat intolerant. I’m inflamed and angry.
And I spend most of my time now just coping through that and managing and finding new and fun ways to manage that minute-by-minute pain. So I've transitioned my activity to be more inwardly focused on doing good mental health hygiene. On reflecting on what I can be doing with myself for myself. Focusing on ways that I can continue to improve my relationship with Caliban and my ability to trust in him, his ability to trust and depend on me. Looking at ways that I can be a better contributor and advocate for myself, and also a force of myself within not only this little niche community here, but also in a broader capacity.
Lauren: Which you're definitely doing with your social media handles.
Ariel: Watch now that we've done this episode, I'm going to crash and burn!
Lauren: I think you've been doing such wonderful things. And the fact that you're taking on a role not only as an advocate, but also as an educator. I think that's really key, that you're so willing, as you have already done in this discussion, to give people an understanding of what the terminology you're using is, the history behind the various movements that brought you to where you are. I think it's so important to understand context in that way. And to understand how that, then, has a knock-on effect on various emotional and physical traumas that you've experienced, and that people in the community experience.
Lauren: Really being able to not only put yourself out there, but then also be, like … “And let me tell you why” … is so key. Because I think a lot of people are willing to say, “This is my experience.” But they're not as willing to explain it to everyone all the time. And you are so willing to do that, which is just wonderful. And that's exactly why we got along so well in the very beginning, because I had questions. So when you're met with openness, no matter who you are, you're welcoming everyone who comes to you with openness. And it's something that you should have had from the word go, and that you didn't always experience. That kind of give-and-take … it’s beautiful to see you exercise that kind of compassion, in response to a lack thereof that you've experienced in your life, as well.
Ariel: First off, I really appreciate that. That makes the bottom of my heart very warm and fuzzy. And that's also very validating and affirming that you've identified what I didn't have and what I'm compensating with. But also, it's my natal drive. I lit up when you said the word ‘educator’, because on one of my stints where I did try to go back into a traditional workplace, I thrust myself into teaching at the college level. And I loved it. There are many reasons as to why that career ultimately didn't work out for me.
But I borrow a lot from the pedagogy that I believe in, and that I exercised as a college instructor, into the ethics of what my online persona is, and what I do and how I want to transmit information online. Because I think my favorite thing about how I conducted myself as an instructor is, I made myself very clear what I believed, and what I believed was right.
But I always wanted to arm my students with the tools and the information, and the time and the resources, in order to come to their own individual conclusions and to nurture and enunciate their own individual voices and their own conclusions and opinions. No matter how much I hated them by the time they got [to the end of the semester], they may have expressed themselves beautifully. Whatever they were telling me could still be the best thing that I’ve ever read. I saw a lot of success in that model of teaching. So I also feel the rewards of sharing that in the kind of content that I produce online. And in the feedback that I get from it. Because of folks like you reaching out to me, because of other folks that have reached out to me from this little niche in the community, that have taken the time to message me directly and say, “I really appreciate what you've said here.” And be able to have these conversations where people open themselves up to me and tell me things that they haven't told their friends or their family, or anyone. Things that they have attempted to tell these people and they feel they're not being heard. That was something that happened to me quite frequently with my students — where they would open up to me about their lives, and their beliefs, and their goals and their dreams. And I always felt like I was in a position where I did not have the power to be able to support them, because that's just not part of the structures of what the education industrial complex is. So, after a brief hiatus from education, I tried to reinvent my career goals and go into … big irony moment … mental health counseling.
Lauren: I don't think there's anything ironic about that at all! I think it's actually an incredibly brave and intelligent path to take when you yourself have benefited from mental health.
Ariel: Oh, absolutely. And most people who become counselors will tell you that it's a mandatory part of the curriculum to be a client for at least six sessions. Personally, I think that you should have to be a client for the entire duration of your program.
Lauren: I would agree.
Ariel: Yeah. There's no way that you're going to get through that program stress-free or without total emotional adjustments. So you need it.
Lauren: Many good therapists who make a career out of it ... they continue seeing their own therapist throughout their entire career. Which to me is even more sensible, because you just never know what you're going to discover about yourself as you talk to other people, and the tolerances and concerns that you may come up against. So, having access to someone to talk to you about that, or just to offload if you've had a lot of tough clients in one day is huge.
Lauren: So, work-wise and in terms of creating that kind of balance in your life or working toward a goal, your focus right now is really on your online presence?
Ariel: It's really on this online presence, because right now, it's the kindest thing that I can do for myself. Not only in nurturing myself, physically and emotionally in terms of the duress of what I can handle, it's also giving myself the light to pursue to keep myself engaged, and moving forward.
Because without having both of those things … when I was in the workforce, in a lot of ways I was thriving. I had good emotional nourishment, but I had poor physical management.
Lauren: Well, that’s the struggle, isn't it … that work/life balance thing. I’m not sure even people who are fully well, physically, don't struggle with it.
Ariel: Oh, I agree.
I strongly disbelieve in the myth that people are actually well adjusted.
Lauren: I would actually say it's less the people who are poorly adjusted to blame, and more the system.
Ariel: Oh, agreed. 110%.
We absolutely exist in a industrialist capitalist system that only puts value on labor. And I've cried about this many times to my therapist … that I'm worthless, because I can't net a certain monetary range that's appropriate for my level of education.
Lauren: I feel you so hard!
Ariel: Because I have a master's degree. I have partial education in three other master's degrees. I have five different certifications. And I have thousands of hours of internships, volunteering opportunities, committees, conference chairs.
And I'm not f*cking qualified for an entry level position for most places, because I can't carry a 25-pound box.
Lauren: Yeah, isn’t that ridiculous.
Ariel: That’s the cutting point. And if I'm in a space where I'm nourishing myself physically, but I don't give myself anything mentally to be engaged, I also plummet. My mental health hygiene goes way down, and I become very suicidally oriented; I become very catastrophic in my thinking habits, my social relationships disintegrate, I become isolated. There's just no in-between point. And I'm trying really, really hard right now with this social media online presence to cultivate that fair median point. So I can't say that this is a selfless, altruistic endeavor of what I'm doing here — because it's me trying to find my way. But I can be honest about the fact that my intentions for doing this are trying to use the fact that I do have all of these qualifications, and that I do have this innate ability to connect and to empower.
Lauren: Yeah, and I think very few of us have gotten involved in this kind of advocacy because we haven't been through something ourselves. Perhaps it's fortunate, because at least you can relate to the people you're communicating with. But in other ways, it's unfortunate, because then who's going to advocate for us outside of our community? For many of us, it takes getting sick or going through some kind of trauma to then reach out to the community. And at the end of the day, there's nothing wrong with that either, because we are all community at the end of the day, aren’t we?
Ariel: Exactly, exactly.
For better or worse, every marginalized group of people is a community.
And there's a lot of discord in our little community! There's a lot of finger pointing. There's a lot of cliques. There’s a serious problem with major lifestyle brands trying to infringe on our community; there's a major problem with multi-level marketing businesses trying to predate and take advantage of our community. There's a huge problem with the language that we use within our community, being exclusionary.
Lauren: Yeah, that’s not just in our community — that’s everywhere!
Ariel: Oh yeah, absolutely. But it's really easy for outsiders to look into our community and say, ‘Oh, well, that's f*cked up. I'm glad I'm not a part of that.’ Or even people who do identify at the base level with this community, but disavow themselves, saying, ‘I don't want to be any part of that. I don't want to be part of hashtags, this language, these clicks, whatever.’ I believe it was Becky … what's her screen name, Chronically Motivated [@ChronicMotivation] or something like that? I believe it was Becky who said that, by default, because of the fact that you are disabled, you are chronically ill, you are physically or emotionally, mentally, psychologically apart from the expectations of the majority … not even that you are not part of the majority … that you deviate from those expectations of how a person should be functioning … you are a part of this community, like it or not.
Lauren: And really, we don't bite. For the most part, we’re very nice!
Ariel: Compared to other local groups that I intersect with, because of other aspects of my identity, the chronic illness community is easily the most put-together and polite of all of those communities.
Lauren: And it’s really interesting, because we both come from different experiences to this same community. And it's so beautiful, all the connections — I'm sure you can agree with this — the connections that you make with people through social media … I mean, the people who I've met, people like you … I might not have met you as my neighbor, you know what I mean? I'm sure in another context, we might have crossed paths. But the fact that we can now is so exciting. There are so many wonderful minds and hearts in this community. And just to be part of that is really exciting.
Lauren: So, have you ever been in any situations where you've been forced to justify that you're disabled? Because I know that you recently released a piece with your very good friend, who's @TheDisabledHippie on Instagram; you collaborate on a lot of stuff. You guys just came out with a piece together where you said that you're proud to be disabled and proud to be trans, and how all of that pride goes together. But are you often in situations where you have to justify that you've got something else going on, that people aren’t seeing? And how does that look? And does the experience change because Caliban might be there, too?
Ariel: That’s a really good question. And it's a very difficult question to have to think back on and articulate. Because naturally, as early on as being a little kid, the expectations of a little kid in kindergarten are … you're going to play with your peers, you're going to go to recess, you're going to participate in PE. Because I couldn't do those things, that set me up for absolute social failure in terms of ever being able to integrate with and collaborate with other people my age. And it also set a very poor precedent to the adult authority figures who were charged with my care when I was there. Because that kind of nuance, and that kind of education, just wasn't there. I think the most support that I got was the recommendation to enter a speech pathology program when I was in kindergarten. And even that was a nightmare, because I was mercilessly bullied by even the other boys that I was in that program with. Because my differences from even their reasons that were there, were just deviance enough to set me up as a target.
Lauren: Kids can be so cruel, can’t they?
Ariel: Kids are the meanest.
Lauren: They’re so cute, and they can be so awful!
Ariel: I wasn't set up for success in that way. Even though I exceeded academically because I put myself in a situation where I worked and compensated really, really hard to perform better than my peers. Because that was my motivation, and that's what my mom wanted me to do so that I could have the most opportunities possible when I got out into the big world. Even though I excelled academically and even though I had all of this potential, all this prowess … because of my behavioral differences and because of my speech differences, and because of my physical level of activity differences, I was …
Lauren: You were an outcast.
Ariel: Yeah, I was outcast. I couldn't get a recommendation for gifted, because they said, ‘Well, we can’t rightfully give a recommendation for somebody who doesn't seem to be cognitively all there or behaviorally all there.’ Because I was problematic and I was being written up for being confrontational and hostile.
Lauren: They missed an opportunity there. At least you figured it out eventually!
Ariel: I think I was better off in the long run, because there certainly is a crisis that exists in the group of people who did go to gifted, and then left school and were not properly prepared for what it would be like out there. But the fact that I was passed over on things that could have been opportunities, or could have been at least rewards for the effort that I put in, and were not given … and the fact that I was passed by routinely, again, and again, and again — even things just innocuous as never being picked to be a part of a group project. Forget about not being picked up to be on the kickball team or whatever … that wasn't even an option. Because I didn't have any camaraderie with people my age, I didn't have anything to set me up for being a dependable, reliable, trustworthy, friendly person to associate with.
Lauren: Which then compounded the mental health concerns, I'm sure.
Ariel: Oh, absolutely.
I don't know what kind of person I could have grown up to be if I had gotten the same level of support that I have now, earlier on.
To some degree, it's not even worth thinking about or trying to imagine — because that's just a reality that can’t exist and doesn't exist. So, all I can be grateful for is that here in the now, going on 30, I have the resources that I have now. And all I can do is be grateful, looking at this Gen Z generation that's coming up and seeing them on social media — even though they're annoying or cliquey …
Lauren: They're also the Parkland kids, though! There are some annoying, cliquey kids doing mindless stuff on the Internet. But then there's the Parkland survivors. There is that real dichotomy. But I'm sure that the generation before us thought that, too.
Ariel: I still get the ‘Ugh, Millennials’ comments.
Lauren: (laughs) I do, too! I was having a conversation with a very close friend over dinner about that last night … that so many of us want to create careers that really mean something. Because none of us wants to waste our time making money for someone else in a corporate setting where there’s G*d knows how many social dangers. But also in the sense that we want the work we do to have real meaning in the world. And this is a problem. Our parents’ generation looks at us, and it’s, like, “Why can't they just stay in a job?” It's because we all really want to make such a difference. And it's really interesting … our parents’ generation, they were us! They were us during the Vietnam War. They were protesters, and they were trying to create change. And it's just interesting how we keep going through these processes generationally; it’s just recognizing that this is just where our generation is at right now. And I think it's exciting. I think if work can become more meaningful, and corporations can become more meaningful in their work, then we're doing something right.
Ariel: Exactly. I'm proud of these kids, even if out of the side of my mouth I’m, like, “Ugh, children.”
Lauren: (laughs) Well, you've got dogs!
Ariel: Exactly. I have plenty of animals. I never have to utter, “Ugh, children!” in my own household.
Lauren: Well, they don’t talk back, do they? So that's the big benefit, isn't it?!
Lauren: Now, what about with Caliban … have you ever been in situations where you've been out with him, and you've had people discriminate against you because they didn't want you bringing a dog in somewhere — and you had to explain it was a service dog?
Ariel: Fortunately, those interactions have been very few and far between, because Florida is one of those states that does give rights to service dogs in training. And I actually live pretty locally to a rather prominent dog training facility for folks with disabilities. So people are pretty used to seeing dogs about in public. I also happen to live in a very dog-friendly intersection in the county. So dogs in public is fairly much the norm. Fortunately, I’ve never run into blatant discrimination here locally, for having Caliban with me. When I was in New York recently, there was a small situation with being approached by a storefront owner who said, “No animals allowed in the facility.” But backed off pretty quickly when they recognized that these were working, house-trained animals. But those horror stories do exist out there — people being confronted or being blatantly told, “You can't have that in here.”
What I have experienced, though, in having a dog with me, is that people are inherently more suspicious of what I am doing. Because more attention is brought to the fact that there is something wrong with me. If I am identified as the handler of that dog, then that becomes the predating question in that person's mind of … something is wrong with them, and they're going to do something or something is going to happen. It's that bystander curiosity that kicks in.
Lauren: Wow. And what's interesting is that Caliban actually gives you a visible disability component in your identity … in a sense that, as you're saying, you're then presenting as someone who is dealing with some kind of physical or emotional condition that you need the dog for. And people are then suspicious. It’s just so fascinating to me.
Because I used to be a full-time wheelchair user; I used to be a full-time person on crutches. So I did have those components of visibility as well. Nowadays, my orthotics are virtually invisible.
They either blend in with my clothes, they blend in with my shoes, or they’re wearable under my clothes — and I can get by without anybody asking me about those things … they never come up. Unless I'm going through a metal detector or something like that. But reintroducing a dog as part of my daily routine, it reintroduces the ‘making visible aspects’ of having that condition. So, where earlier I talked about conforming to ideals of masculinity in order to be more under the radar and be invisible — doing things like wearing traditionally masculine clothing … styling my hair, pulling it back so it's not really floating, framing my face … using more masculine social conventions. So, not being as expressive with my hands. The people at home can't see this, but I've been talking with my hands the entire time.
Lauren: Yeah, you’re hyper-aware of those exact physical things. It's just so interesting, because also, when you're in a wheelchair, people look at you and they know that you can't walk or that you're not comfortable walking for a long time. When you have a dog, it could be anything, right?
Ariel: Exactly. It opens up all the possibilities.
Lauren: It’s amazing, because I see someone with a service dog, I’m, like, “Puppy!” And of course, it's a service dog, you don't go up and pet them when they're working. But I just get so excited to see someone with a dog in a place that you wouldn't necessarily see a dog sometimes, that I never think about the person. I'm always focused on the furball!
Ariel: One of my favorite things to ever happen in public, was when we went to Animal Kingdom. We went to a zoo that literally has million-dollar animals. There were gorillas. Gorillas are a largely endangered species that will probably go extinct in my lifetime. Children are there, they are seeing these rare and fantastic animals. I walk by, and immediately the most exciting thing that they have seen all day is this very ordinary looking dog. They’re screaming and getting ecstatic. And I'm just, like … There are literally priceless animals here and they’re begging to see …
Lauren: Yeah, but they’re all in cages. Whereas they can pet Caliban. It’s about proximity, isn't it!
Ariel: Exactly. That's the allure for children, and overgrown man children.
Lauren: Or lady children like me!
Ariel: It opens that whole avenue where people see the dog and they invite themselves to ask, “What does he do? What is he for?”
Lauren: And then it’s invasion of your privacy.
And infamously, people cite the ADA for the two questions of how to validate that a dog is a service dog. That's an entitlement that's given to business owners. That's not an entitlement that's given to individuals. It's not within an individual's right to ask: “Is that dog a service dog? What tasks do they perform?"
It's hard to navigate the public. And you see it very frequently with dog handlers, that they've started using patches to identify exactly what kind of work that dog performs, perhaps what their diagnosis is. I personally don't do this. And I don't like doing this, because …
Lauren: It’s nobody’s business but yours!
Ariel: Exactly. I'm a grown ass man. And I don't have to tell anybody anything.
I’m disabled and proud. I am happy to educate, happy to talk about it at any given time. I can soliloquize about it. But also, I would like to really just get my f*cking groceries and leave the store before I have an episode in the middle of the checkout line.
I want to mitigate as little human interaction as possible.
Lauren: Absolutely, yeah, I totally get that. I've actually started, just to reduce stress because it was physically draining … I've started having my groceries delivered. Because it was work to go to the grocery store, and I don't even have a service dog. So, I can relate to the grocery store experience for sure. But the rest of them, of course … that's certainly your experience.
Ariel: Oh, exactly.
Lauren: I was going to ask how important it is that we keep talking about everything that you and I have talked about —disability, invisible illness. How important is it that we provide a level of disability for the invisibility of these experiences?
Ariel: 100% super important.
I mentioned to you before that I have other diagnoses that coexist with the ones that we've talked about here. And there are most certainly other aspects of my day-to-day life that coexist with these diagnoses. I choose not to talk about many of those. Primarily because there are other great advocates who are already representing those and using their voices in very powerful ways.
Lauren: Don’t undersell yourself, though!
Ariel: Oh, no, absolutely not. But the things that I have chosen to speak about today — endometriosis as a gender diverse individual … thyroid disease as a f*cking whole concept … being a service dog handler … having a cluster B personality disorder … being a disabled person who has tried to get into the workforce and has not succeeded in the way that I wanted myself to be set up for.
These are things that are not unique to me. But they are my unique experience that I have total authority to be able to use my advocacy platform to represent.
And because I can do that, and because I devote my energy to talking about those topics and prioritizing those topics over the other facets of myself, it creates a space that improves the quality of life for other people who felt like they were the only ones who felt that way. Or that they were the only ones who were diagnosed in such a way, or lived such an experience.
Lauren: Well, and I'm glad you brought this up, too, that there are certain aspects of your diagnoses that you're not as public about. I think it's important to acknowledge the fact that there's privacy involved in these conversations, too. So many of us are out there on social media, posting our stories or the stories of others. And sometimes that story is more than what you're seeing. And it's okay, that you're not being told the whole story, because it may not be any of your business. Also, it may be something that you might still be processing and working through. People aren't always ready to talk about everything. And as you say, you're aware that there are people in other spaces who are advocating for your other diagnoses in ways that are very powerful. And what you're doing is really targeting, and talking about these particular issues in a very poignant way, and not letting them be lost in the rest of the story as well.
Lauren: I think that's fantastic.
Ariel: I think there are plenty of people who are strong advocates in that way. Julian, @TheDisabledHippie, is a good example of somebody who is very public and very strong-spoken, but also isn't giving you the full story. Famously, he doesn't like over-medicalizing the components of his chronic conditions. Jameela Jamil is another person who is very candid about having autoimmune disease and EDS, but uses her voice and her platform instead to empower the experiences of other chronically ill, predominantly women, but people as a whole. Famously extends that privilege out to advocate for people who are less likely to have their voices heard.
Lauren: Yeah. And famously shames celebrities who sell slimming teas, with the @i_weigh movement, which is really fantastic. She's one of my heroes, too. So I'm really glad you brought her up!
Ariel: Any opportunity to bring her up is a good opportunity.
Lauren: I know, she's so amazing. If you are out there listening, Jameela, I want you on the show — and also as a best friend! So, can you tell me, Ariel … I wondered what your top three pieces of advice would be for somebody who may be entering the world of chronic and/or invisible conditions? Now, this doesn't necessarily mean disability; it could also mean gender identity questions. What would you recommend to someone who looks like they might be like you?
Ariel: This is a really good one. I was absolutely terrified about this part of the podcast! I listened to several episodes …
Lauren: Oh, you’re so sweet!
Ariel: Like the Top Threes, and studying the types of prompts that you give, because I was, like, ‘Okay, I need to brainstorm what I'm going to say at this part!’ So, advice for somebody who is either just coming into an identity where there is an existing community, but they are just getting their feet wet — whether it's gender identity, whether it's rediscovering a piece of their past, whether it's a chronic condition, whether it's a progressive disability.
The first thing that I recommend is trying to find your people. Immediately.
Not necessarily going to Google … not to Google to find your symptoms, or to expect to come to be a certain way. Because that's the mistake that I made very early on. I tried to pathologize myself to a certain specific rigor of standards. And that's why I struggled for so long with having a thyroid disease, because I was one of those people who just is very treatment-sensitive and treatment-resistant. That's why I struggled with my gender for so long, because I was very stressed out by the rigor of binary genders. There's a guide out there famously called the Hudson's FTM Guide, which tells you how to be a trans guy, and how to transition and all the things that you should do, and all the clothes that you should wear.
Lauren: That is, in and of itself, so limiting.
Ariel: Oh, yeah, it stressed me the f*ck out.
Lauren: And does it exist for people who are transitioning to female, too?
Ariel: It does. These resources absolutely exist; they’re out there. There are people who give you this guide. The biggest mistake that I made is that I looked at these things first, and I took these things as my Bible. What I should have done, and where my journey got easier with these things, is when I started communicating with other people who were going through similar, but not the same experiences.
And I realized that I was allowed to have my individual nuance.
Lauren: Well, did you meet someone like Julian because of the community, or did you know him before?
Ariel: I actually met Julian through a mutual local friend.
Lauren: Okay. He would have been a huge part of your community; obviously, the two of you are really close.
Ariel: Definitely. We've been acquaintances through this mutual friend who initially found me through the service dog community. So it was kind of like a weird connect-the-dots situation to where I became closer with Julian this past year, because we began to identify other crosshairs that existed outside of these major intersecting points. Also because we were forced to interact with each other in person when we just happened to stumble across each other.
Lauren: But it sounds like it was sort of through the community, because it was through that friend in the service dog community, and you sort of found each other that way?
Lauren: So you never know, your new best friend could be out there.
Ariel: Exactly. And three of my best friends I've had in my life for 13 years because of LiveJournal.
Lauren: Oh, my gosh, LiveJournal! What a throwback!
Ariel: Because we would meet each other through … this is so embarrassing …!
Lauren: I love that you're bringing it up! Oh my G*d, I remember having one of those at college!
Ariel: Right? We met each other through the LiveJournal community for people who were Millennials. We weren't called Millennials then. But we were Millennials who listened to music from the 1960s and 1970s.
Lauren: That is quite random!
Ariel: Exactly. And the common thread between all of these people, is that we're all some kind of trans and that we're all some kind of sick and disabled. But we found each other through a completely unrelated and separate community. It just shows how much people power there is out there. So, people power is the first one. The second one is, establishing your team, from those people.
Creating your A team; finding people who ally with you, finding people who advocate with you, finding people who you can vent to, finding people who you can celebrate with. Because you need all of them, and you need all of them for various aspects of your being. You need that one friend that you can just be pissy and bitchy with. You need that friend that you can call on to celebrate even just the most innocuous and mundane aspects of your life. You need that friend who's going to stick up for you in a hard situation, even when you do not ask them to, that just invites themselves to advocate for you. We have an unfair expectation that a person should be all of these things all of the time. And this is something that I specially have struggled with, with splitting on people — expecting them to do it all. You need to give people the respect and the autonomy that not everybody is who you need them to be all of the time. But if you can rely on them to be somebody who is on your team, and who is willing to pick up the slack of that team in a given situation, you're going to be okay.
Lauren: That’s really great. I love that. And it's not just your people socially; it's also your people medically, too, isn't it? Ideally.
Ariel: Yes, absolutely.
Ideally, yes, you want to make sure that your providers are also your advocates.
I've been really lucky in this aspect in that all of my providers, I found through my therapist. Actually, number three is a good one. The third one is, find a good therapist. No matter who you are, no matter whether you have a pre-existing mental illness. Most people will go to the doctor when they’re chronically ill. You have your preferred physician that you go to once a year for your annual checkup. Likewise, to practice good mental health and good mental hygiene, you should have a therapist that you trust, and that you know you can go to if you're feeling under the weather. And especially if you're entering a community, because of your invisible, personal internal struggle … you should have that outlet of a trained professional who not only has the resources because of their educational background, but who has the resources because of other clients that have gone to them and who have shared what works for them. It means that you don't have to stumble through the same experiences that those clients had to, in order to access those resources.
Lauren: It’s about smarter not harder, isn't it?
Ariel: Yeah, exactly. Because of the fact that other trans clients that my therapist works with had luck with certain medical providers, I was able to get those names. And I was able to have a team of trans-affirming medical providers who are also extremely competent and well-educated medical practitioners.
Lauren: Yeah, that's really wonderful. And I think that's all really sound advice. Which leads us to the final Top Three List … obviously, you've made lifestyle changes to manage symptoms, and to really embrace your true identity. Particular lifestyle changes, or guilty pleasures, or comfort activities … like a top three … things that just give you joy that you will do, regardless of you the consequences.
Ariel: Oh, man! One of them, I think, is definitely throwing myself 100% into any physical opportunity that's given to me. Like going out in nature, because it's just so nourishing overall. Even though on good days, I physically pay for it while I'm moving. The next one … I have a really poor relationship with food. I just do. I think it comes with the territory with having any kind of physical, superficial, core self-image of yourself. So number two, I have a really dysphoric relationship with food. I think that comes with the territory, with having a dysphoric self-image of what a person who is a man or is a woman is supposed to look like. And it also comes with the territory of having a chronic illness that impacts the gut so severely. And having a hereditary history of gut-related disorders.
So food, to me … not only have its effects been manifested as something that is scary to me. But also food, in and of itself, is seen as a dangerous item to me. Learning to identify positive experiences with eating and with food is a good thing. So going out to eat with other humans, or getting involved in cooking. Food has become an adventure activity for me.
Lauren: Isn’t that a good way of seeing it.
Ariel: Exactly. It’s become the same with putting myself out in nature. I'm essentially jeopardizing my health. Because being in nature, I'm exposing myself to allergens, I'm exposing myself to heat, I'm exposing myself to things that give me duress. Likewise with food. I’m exposing myself to things that potentially will give me duress, or that I know will give me duress. But I'm creating and nurturing positive experiences and enlightening experiences, and I'm affirming the truth of the matter that is also good for me. The third thing, that's just brings me nothing but joy … and I share this in common with Lara [Bloom], when you had Lara on here … and I reached out to Lara to talk about this … Podcasts or really any kind of auditory content, because I have problems with auditory processing. When I watch TV, or when I listen to media, I need to have a captioning component in order to articulate those words and attribute meaning to them. So, challenging myself further with the auditory content, listening to podcasts. My favorites, especially, are true scary stories and true crime content. Because it's invigorating. And it's exciting. And it keeps me committed and glued to what's going on.
Lauren: Sure. You can get lost in the story more.
Ariel: Exactly. It's warm, it's nourishing, it's fulfilling.
Lauren: I love that you've called true crime warm, nourishing, and fulfilling! (laughs)
Ariel: Oh, absolutely! There's nothing that humbles you more than hearing about how close we are to the extinguishing flame of life, honestly.
Lauren: Well, that's something that we haven't really talked about today, but one of the platforms that you also advocate for is being death positive.
Ariel: Yes, I guess that means you have to ask me back on the show in the future!
Lauren: I think it might! So tell everyone, Ariel, where they can find you on the interwebs? Where can people find you to look into your work and your writing?
Ariel: So, if you are interested in death positive content, you can check out my blog, CaarpeThatDiem (which is one word with two As in it because somebody already took Carpe That Diem). CaarpeThatDiem.WordPress.com. If you are interested in my full spectrum content, not just hyper focused on death and dying and the value of life, you can get that on my Instagram which is @Carpe_That__Diem (without the double A, but with one underscore between Carpe and Diem, and two underscores between That and Diem — because again, this is a very popular phrase apparently that other people have been drawn to).
Lauren: And we’ll link to it on the website page. If people are listening and they’re confused, it’ll be linked on the website page. And we'll obviously link on our social platforms as well. So people will be able to just click and see you. Well, Ariel, it has been such a pleasure getting to know you better and having you on the show. I'm really just so honored that you've taken the time to share your story with us. And I can't wait to chat more and have you on again to talk about mortality and anything else that may come up between now and then!
Ariel: Absolutely! It's been an honor and a privilege to be on here. I am very grateful that you extended this invitation to me, and I can't wait to come back again.