Speaker 1: It's an invisible disability you can't tell from the outside.
Speaker 1: And so many people who we see walking around are
Speaker 1: going through these things that we have no idea, And
Speaker 1: I feel like just giving people like a blank slate
Speaker 1: and never judging them in that way. Why would I
Speaker 1: be making this up? Why would I be spending such
Speaker 1: so much energy like trying to get help.
Speaker 2: Welcome to When You're Invisible. My name is Maria Fernanda Diez,
Speaker 2: and I know not everyone can roll there are so
Speaker 2: it's fine to call me Maria. When You're Invisible is
Speaker 2: my love letter to the working class and others who
Speaker 2: are seemingly invisible in our society. I hope to build
Speaker 2: a community here that will inspire you to have generous
Speaker 2: conversations with others that are different from you, conversations that
Speaker 2: might help you see life in an entirely different way.
Speaker 2: It was in ragtime you could do these bait like
Speaker 2: these beautiful like twists and whatnot, and you would do
Speaker 2: that in rehearsal, and it's just like, how do you
Speaker 2: move your body?
Speaker 1: That was the last performance where I felt where I
Speaker 1: felt like I could use one hundred percent of my
Speaker 1: body and my energy. That was like the last time
Speaker 1: I could really perform, and I remember it being exhilarating.
Speaker 2: This is Keana. We first got to know each other
Speaker 2: during Ragtime the Musical, which was a show that we
Speaker 2: were both a part of. Our sophomore year of high school.
Speaker 1: We went to an arts high school and we were
Speaker 1: both in the same acting track.
Speaker 2: Our high school was in downtown Saint Paul. There are
Speaker 2: different kinds of arts you could focus on, whether it
Speaker 2: was visual art, dance, music, musical feeder. I transferred to
Speaker 2: the school in tenth grade. Kids came from all over
Speaker 2: the state, and we also got students who maybe didn't
Speaker 2: care about the arts but had hated or been kicked
Speaker 2: out of other schools. Overall, we were a group of outspoken, cool,
Speaker 2: sweet and weird kids. Our school days were extra long,
Speaker 2: partially because we had extra arts classes and it was
Speaker 2: a small school, so we all got pretty close. Also,
Speaker 2: it was a fairly new school, which meant students could
Speaker 2: get away with some extra shenanigans, whether it was coming
Speaker 2: in late, bringing in Starbucks. Oh, and it was normal
Speaker 2: to see students stretching in the back of class and
Speaker 2: doing pure wets down the hallway. There were parts of
Speaker 2: my high school experience that actually was high school musical.
Speaker 2: When music came on in the hallway or in a
Speaker 2: classroom right before class started, it was normal for people
Speaker 2: to break out in choreography and harmonies. High school is
Speaker 2: always weird, but looking back at this time, there's a
Speaker 2: lot of good memories and I was happy to reconnect
Speaker 2: with Kana. Can you introduce yourself? Let's start it off
Speaker 2: with that.
Speaker 1: Yes, my name is Keana Adams, thirty years old. What
Speaker 1: else should I say to introduce myself?
Speaker 2: Where are you from?
Speaker 1: I'm from Minneapolis. I lived in Paul growing up and
Speaker 1: then moved to Minneapolis. But yeah, I've been in Minnesota
Speaker 1: my whole life.
Speaker 2: Being a lifelong Minnesota was true of almost everyone I
Speaker 2: met in Minnesota. It was something I noticed a lot
Speaker 2: as an outsider and as a teenager. It really seemed
Speaker 2: like Yanna had this deep sense of community in her life.
Speaker 2: She was one of the cool girls. She always was
Speaker 2: dressed in leggings and a scarf with a cool haircut.
Speaker 2: She was edgy, talented, a badass, and unafraid to express
Speaker 2: her emotions, whether it was to other students or to teachers.
Speaker 2: She came from artist's parents, so discipline and art were
Speaker 2: second nature to her. And then we sang in the
Speaker 2: Minnesota Opera together.
Speaker 1: And we sang in Minnesota Opera together that I love
Speaker 1: Pussure Joffre.
Speaker 2: That was so fun.
Speaker 1: It was one of my favorite experiences, and I'm so
Speaker 1: glad that I got to do that. I don't know
Speaker 1: if I could have done something like that like later
Speaker 1: in life. So it was really special experience. I hold
Speaker 1: it very dear to my heart.
Speaker 2: Yeah, you are and were an incredible singer.
Speaker 3: Thank you.
Speaker 2: Keana's voice ugh has its own flexibility and unique tambre.
Speaker 2: From what I can remember, she could go from a
Speaker 2: classical operatic sound to pop belt within the same breath.
Speaker 2: Keana and I wanted theater to be something that wasn't
Speaker 2: just confined to high school. But unfortunately, the reason that
Speaker 2: Ragtime performance that we were both in when we were
Speaker 2: sixteen was one of her last is because Keana has
Speaker 2: a chronic illness and things took a turn for the
Speaker 2: worse around that time.
Speaker 1: And it just it's so hard for me to go
Speaker 1: on stage and not be one hundred percent. You know,
Speaker 1: I can't go on stage and be fifty percent.
Speaker 3: I just can't. And so then I hurt myself.
Speaker 1: I would hurt myself often on stage, and so I
Speaker 1: had to stop.
Speaker 3: Eventually, I was just starting to sing again.
Speaker 2: Actually, it's been about fifteen years since Ragtime, and I'm
Speaker 2: so happy to hear she's finally singing again. The reason
Speaker 2: it took such a long time to come back is
Speaker 2: something called EDS. First, can you tell us what EDS is?
Speaker 1: Of course, yes, Taylor's Donlo syndrome is a genetic connective
Speaker 1: tissue disorder. Connective tissue is everywhere in your body. It's
Speaker 1: the glue that holds you together. So when that glue
Speaker 1: isn't there, you have to manually do it. You have
Speaker 1: to manually scrunch up all of your muscles so much
Speaker 1: that it stretches out the ligaments enough to keep you
Speaker 1: in place.
Speaker 3: And that is just.
Speaker 1: So tiring in itself. Yeah, that I don't have any
Speaker 1: any room for anything else.
Speaker 2: We don't think about connective tissue very much, but it's
Speaker 2: everything from our ligaments to the cartilage and our joints,
Speaker 2: our skin, even our blood is considered connective tissue. Everything
Speaker 2: that helps holds us together into the human shape that
Speaker 2: you see can play a part in connective tissue. And
Speaker 2: if that system isn't working properly. Suddenly, gravity and your
Speaker 2: muscles are in this war with each other. Because your
Speaker 2: muscles aren't getting extra help from the rest of your
Speaker 2: system to uphold you. It takes a lot of effort
Speaker 2: to keep your body in place.
Speaker 1: I have the hypermobile type three, which is often recognized
Speaker 1: by stretchy skin and just hyper mobile.
Speaker 3: I have dislocations daily.
Speaker 2: That hyper flexibility makes me highly aware of that fact
Speaker 2: that throughout the entire interview, she's actually wearing a brace
Speaker 2: on her neck to help her.
Speaker 1: And like, when I'm not wearing my neck brace, like my.
Speaker 3: Head feels just so heavy.
Speaker 1: It feels like a bibble hit and it's so hard
Speaker 1: to keep.
Speaker 3: It upright and to use all these muscles.
Speaker 1: It feels like gravity's turned up like ten times, like
Speaker 1: you're on a different planet, the g forces. If I'm
Speaker 1: not really holding tight, move the vertebrae, and wow, it's
Speaker 1: just scary and my whole I just you know, all
Speaker 1: my muscles over, you know, trying to just keep things
Speaker 1: in place, and like say, you're.
Speaker 3: Okay, You're okay, You're not gonna move.
Speaker 1: And like I hate the way I look with it on,
Speaker 1: Like I like it so much. I don't have a
Speaker 1: double chin when I don't wear my neck brace. But
Speaker 1: I have to just let that go and like let
Speaker 1: that superficial part of it go. And see now I'm
Speaker 1: talking with my neck too much and it's it's dangerous
Speaker 1: for me. I have to put my neck brace back
Speaker 1: because oh it's so hard.
Speaker 2: This is one of those things that isn't worth pushing
Speaker 2: because it could just make things worse.
Speaker 1: It's not a degenerative disease, but it is in the
Speaker 1: way that like when my ligaments stretch, they don't stretch back,
Speaker 1: they will only continue to stretch, Like when you get
Speaker 1: a new sock and it's elasticity is really good at first,
Speaker 1: but eventually it's going to stretch and it's never going
Speaker 1: to get back to that original elasticity.
Speaker 2: Can you describe what you experience physically, like, how would
Speaker 2: you describe it?
Speaker 1: It's I'd say sometime when it's really bad, it feels
Speaker 1: like a migraine in your whole body. And so much
Speaker 1: of it is like when you have a really bad
Speaker 1: knot in your shoulder, except it's in every muscle, like
Speaker 1: it's in all of the muscles. It's often just like
Speaker 1: this feeling of malaise. But it's just like this nausea
Speaker 1: from be from over exerting and not being able to
Speaker 1: hold your body together, but your brain is literally forcing
Speaker 1: you to you can't relax.
Speaker 2: This is why I wanted to interview Kana. She's dealing
Speaker 2: with this thing that's not visible and the only thing
Speaker 2: that is is the neck brace. But I think, in
Speaker 2: all honesty, I think a lot of us would assume
Speaker 2: that it was a temporary injury or accident. This takes
Speaker 2: a toll on the person's body, mind, energy, and relationships.
Speaker 2: Everything is being affected by a battle that no one
Speaker 2: else can really see.
Speaker 1: We call it the spoon theory and chronic illness. So
Speaker 1: if you get so many spoons per day, and each
Speaker 1: thing that you do cost a spoon. When I shower,
Speaker 1: that costs a spoon. When I empty the dishwasher, that
Speaker 1: costs a spoon. When I'm sitting up for an hour
Speaker 1: class that costs a spoon, and even small things like
Speaker 1: in between they cost spoons when you wouldn't really think
Speaker 1: that they would. But for somebody who's chronically ill, Yeah,
Speaker 1: we're called spoonies, and we call it the spoon theory.
Speaker 2: You know, It has kind of a silly name, but
Speaker 2: this concept really clicks for me. It isn't an easy
Speaker 2: experience to describe or to get across to people, and
Speaker 2: I know that from personal experience. My mom has had
Speaker 2: rheumatoid arthritis since I was a freshman in college, and
Speaker 2: this means a lot of the time she needs naps
Speaker 2: through it the day when she walks far, her feet
Speaker 2: will swell for the rest of the day. Preparing for
Speaker 2: a gathering at her house used to take a day
Speaker 2: or two, and now it requires three to four days
Speaker 2: or else she's going to lose days after the event
Speaker 2: from exhaustion and pain. Every day looks different, so help
Speaker 2: and emotions shift around daily and personally, the learning curve
Speaker 2: for communication was hard, and so I love this spoon
Speaker 2: theory because I think it's a way I can understand
Speaker 2: how my mom might be going through the day in
Speaker 2: a way that maybe she doesn't have the language to
Speaker 2: talk about yet. It's like, this is like a lovely
Speaker 2: analogy of spoons, but you're like, oh, every spoon that
Speaker 2: it costs is built on a lot of like pain, fatigue, focus.
Speaker 2: I'm sure like so much buttuy energy goes to that
Speaker 2: just managing that.
Speaker 1: And even like when I wake up in the morning,
Speaker 1: they don't always start with the same amount of spoons.
Speaker 1: They don't sleep well because of pain and because of how.
Speaker 3: Comfortable I can get at night.
Speaker 1: I can only lay in one position that can keep
Speaker 1: me safe, so that's.
Speaker 3: Not comfortable a lot of the time.
Speaker 1: So I wake up not having slept, and I never
Speaker 1: can sleep in because my body is so afraid to
Speaker 1: shut down that it's so used to getting injured that
Speaker 1: it won't completely shut down.
Speaker 3: And just let you know, trust gravity.
Speaker 2: Yeah, okay, let's start at the beginning of this story
Speaker 2: real quick. Keana was diagnosed when she was eight. Her
Speaker 2: dad was actually diagnosed at the same time, after retiring
Speaker 2: from a full career as a violinist with the Minnesota Orchestra.
Speaker 2: So Keana was showing signs earlier, but at first her
Speaker 2: symptoms were just being hyper mobile.
Speaker 1: Some people have DS and don't have any pain and
Speaker 1: they're fine do many different things. We thought it was
Speaker 1: a plus because I was very flexible. I did circus,
Speaker 1: they put me into contortion.
Speaker 3: We just thought of it as it was a superhero trait.
Speaker 2: It was when Keana hit puberty that the condition developed.
Speaker 2: Into something more painful.
Speaker 1: And with the female horn, you know, estrogen, it gives
Speaker 1: you mix, you more lax in the joints and in
Speaker 1: your college in itself. And so every month when in
Speaker 1: my cycle, yeah, I get more discilocations because your hips
Speaker 1: have to be able to trage God be able to
Speaker 1: have a baby.
Speaker 3: Right. So it got really.
Speaker 1: Bad during the time of when I was growing to
Speaker 1: be a young woman. Yeah, and then it evened out,
Speaker 1: and once I got the right medication regimen, can I
Speaker 1: can live.
Speaker 3: I can work with my symptoms.
Speaker 2: I'm so happy that Keana's on the right meds and
Speaker 2: in a good place today. But there were some hard
Speaker 2: years in there. I didn't know everything that was going
Speaker 2: on in high school, but even I remember standout moments
Speaker 2: when she was starting to experience more painful symptoms. I
Speaker 2: remember in school one time, like when I feel like
Speaker 2: it was Paul who was teaching class, and you were
Speaker 2: in a lot of pain that day, and you were
Speaker 2: laying on the ground and you're like I don't You're
Speaker 2: like I can't get up, like I'm not feeling well.
Speaker 2: And I remember Paul being like, Keana, it's fine, just
Speaker 2: get up, and like completely disregarding you for a minute.
Speaker 2: That's like part of the thing that I was like,
Speaker 2: Oh my gosh. This stayed with me so vividly that
Speaker 2: this young girl like woman growing up was not believed
Speaker 2: or heard by her teacher.
Speaker 1: In high school up until sophomore year. Even the beginning
Speaker 1: of junior year, you couldn't tell, and even my friends,
Speaker 1: there was no I didn't have big enough symptoms that
Speaker 1: they were really impacting my life, so I would never
Speaker 1: talk about it. I never talked about the fact that
Speaker 1: I had the EDS diagnosis and I was just flexible
Speaker 1: and I was weak, but I try to keep up
Speaker 1: with everybody else, And when then I started showing symptoms,
Speaker 1: I was labeled as a lot of different things, attention seeker,
Speaker 1: drug seeker. Sometimes I got a member being accused of
Speaker 1: having an eating disorder because they didn't think that I
Speaker 1: really had this and that it was impacting my eating
Speaker 1: because I was nauseous all the time. I felt that
Speaker 1: people were labeling me, especially because I was smoking a
Speaker 1: lot of weed my senior year, and honestly, I felt
Speaker 1: like I would do anything to escape what I was
Speaker 1: going through.
Speaker 2: I remember hearing whispers of the speculation of what people
Speaker 2: thought she was going through the way people were viewing
Speaker 2: her was shifting, and sometimes she was seen as a
Speaker 2: problem kid. I'm really sad that I didn't understand fully
Speaker 2: what was happening in the moment, and how lonely it
Speaker 2: must have been.
Speaker 1: I wasn't getting help from any doctors. I was too young.
Speaker 1: No one was going to help me by putting me
Speaker 1: on painkillers. For so long, doctors would just say this
Speaker 1: is too much, I can't take your case, too difficult, whatever,
Speaker 1: and I'll get passed on to another referral and.
Speaker 2: Referral, referral, referral.
Speaker 1: Later they're like, why haven't you had a doctor and
Speaker 1: so long? Why are you doctor shopping? Nobody was going
Speaker 1: to take that leap, especially with somebody who had substance
Speaker 1: use issues, to give me the medicine that I've needed.
Speaker 1: Like yeah, when I in my junior especially senior year,
Speaker 1: just sitting up was so difficult. It was like my
Speaker 1: middle could not hold me up and I would get
Speaker 1: this ring of pain that like then my ribs would
Speaker 1: come dislocated a lot of the time, and so I
Speaker 1: had to lay flat on my back and I was
Speaker 1: stuck on my back for like four years of my adulthood.
Speaker 1: Holy cow, I had a TV installed in my ceiling
Speaker 1: because I couldn't even turn my neck to like look
Speaker 1: at the TV on the wall.
Speaker 3: Like it was that bad.
Speaker 2: This period in Keana's life is four years of her adulthood,
Speaker 2: of her young adulthood. The years you think about where
Speaker 2: you're going to bars, partying, meeting random people. Were years
Speaker 2: Kiana spent immobile.
Speaker 1: And it was only five years ago that I finally
Speaker 1: got on the right medication. And once that started, I
Speaker 1: started to be able to work. I went back to school.
Speaker 1: I can do the things and that's all I was
Speaker 1: asking for before. It just blows my mind.
Speaker 2: This is an amazing moment, literally changed her life after
Speaker 2: dealing with years of red tape disbelief, doctors being hesitant
Speaker 2: to work with her. But I wish that this didn't
Speaker 2: have to be exceptional, that it didn't feel miraculous or magical.
Speaker 2: This is something that she and so many others deserve,
Speaker 2: but not everyone gets. It's hard to find the right
Speaker 2: treatment or diagnosis still today, and it's a journey. Not
Speaker 2: everyone is afforded.
Speaker 1: Aayler Donald's syndrome is just starting to be known more
Speaker 1: about in the medical community and that it, and patients
Speaker 1: are now believed that when they say that, it causes
Speaker 1: extreme pain and extreme disability.
Speaker 3: Right in many people.
Speaker 1: And it's just crazy how much success I've had since
Speaker 1: I've gotten on the right regimen of medications.
Speaker 2: Over time, Keana has found relief and she's found a
Speaker 2: sense of freedom through art. She's also found supportive, loving relationships.
Speaker 2: But that delay and care came at a cost, feeling
Speaker 2: like her friends were slipping away and her childhood dreams
Speaker 2: were no longer reachable. That's coming after the break, welcome back.
Speaker 2: When I think back to senior year of high school,
Speaker 2: it was buzzing as our whole class was figuring out
Speaker 2: what our futures would look like, going into the professional world,
Speaker 2: going to college, going to performing art school. All of
Speaker 2: us were busy with applications, interviews, auditions, and so was Keana.
Speaker 2: But eventually she would have to face a shadow that
Speaker 2: was hanging over her.
Speaker 1: The biggest thing about the EDS for me was that
Speaker 1: I really lost my sense of I mean, before I
Speaker 1: was a performer, I was an actor. I knew that's
Speaker 1: what I wanted to do for the rest of my life.
Speaker 1: And I lost my instrument, I lost my ability to
Speaker 1: express myself in that way.
Speaker 2: Yeah, Keana got into an amazing school, but realized it
Speaker 2: wouldn't be possible for her to go.
Speaker 1: It felt like I wouldn't have that chance again to
Speaker 1: go to a college like that and get that kind
Speaker 1: of an education.
Speaker 2: Right.
Speaker 1: I really grieved the life that I wanted, the girl
Speaker 1: that I had always seen growing into the future, and
Speaker 1: then what was actually happening and how they were not
Speaker 1: fitting together, and I was really angry and I had
Speaker 1: some bad depression for a while.
Speaker 2: On top of all of this, the people she'd always
Speaker 2: surrounded herself with turned out to be people she couldn't
Speaker 2: really rely on. It was just too much for them
Speaker 2: to have to deal with. Once I wasn't fun anymore.
Speaker 2: Once all I was was bad news. Once they had
Speaker 2: to come visit me and do work and I wouldn't
Speaker 2: give anything back. They just left and I didn't really
Speaker 2: see them much again. I won't name specific names, but
Speaker 2: it broke my heart because I thought those people were
Speaker 2: my rock, but then as soon as I needed to
Speaker 2: ask anything of them, it was too much to ask.
Speaker 3: That's heartbreaking.
Speaker 2: I can feel that heartbreak of being like, hey, I'm
Speaker 2: not funny anymore, or I'm going through something and I
Speaker 2: can't and I don't feel like people are supportive. What
Speaker 2: did you feel like was the threshold?
Speaker 3: Oh my god.
Speaker 1: At first, it was like there was like a little
Speaker 1: bit of tolerance.
Speaker 3: They would show up a little bit, but it was
Speaker 3: like small things.
Speaker 1: When we were like out and about, I was always
Speaker 1: in the passenger seat, or if we were out somewhere
Speaker 1: at a house and there was the choice between a
Speaker 1: chair and sitting on the ground, I would always need
Speaker 1: the comfy chair, or the fact that I wouldn't share
Speaker 1: my reed with them, or I was like, this is
Speaker 1: my medicine now. My parents started providing it for me
Speaker 1: after a while, once they saw how much it helped me.
Speaker 1: And it really keeps eating. Yeah, and so it's like
Speaker 1: really important. And once I couldn't give it away anymore,
Speaker 1: people stopped showing up.
Speaker 3: Wow, And it was.
Speaker 2: It was It was the worst. My heart goes out
Speaker 2: to Kana in this moment because I can relate to that,
Speaker 2: and I think all of us can in some way,
Speaker 2: shape or form. I think we've all been through time
Speaker 2: where we're going through a lot and we want the
Speaker 2: people we love to be able to support us and
Speaker 2: to be able to go through it with us, and
Speaker 2: not everybody can, and the difficulty of understanding and going
Speaker 2: through that reality it becomes a new layer of heartbreak.
Speaker 1: I was in denial about it for a really long time.
Speaker 1: I didn't want to to see it. I didn't want
Speaker 1: to think that I was real and I was calling,
Speaker 1: leaving voicemails, crying.
Speaker 3: Like where are you?
Speaker 1: Like they were like the only people in my life
Speaker 1: and I just wasn't ready to give that up. And
Speaker 1: I didn't and think that I was that different, just
Speaker 1: my body was. And it's really sad that I wasn't
Speaker 1: more honest with myself because I think I would have
Speaker 1: been able to get over it faster and be like,
Speaker 1: why do I care about these people if they don't
Speaker 1: care about me.
Speaker 2: I'm like, that's it's hard one. When you're young and
Speaker 2: you feel connected to people. I feel like there's an
Speaker 2: element of like in kindness, in our humanity and our
Speaker 2: desire to connect. Of course we try hard. There must
Speaker 2: be a way to fix it, And I think, how
Speaker 2: could you know to let go sooner? To me, it
Speaker 2: speaks to the beauty of you in your ability to
Speaker 2: be like, I want to connect, I want to give
Speaker 2: this a chance.
Speaker 1: Of so many chances, and I was suddenly in this
Speaker 1: box and I felt like I couldn't live up to
Speaker 1: like the person I used to be anymore. And even
Speaker 1: though I feel like I've found myself again and I've
Speaker 1: found my personality again, for a long time like things
Speaker 1: were just law because I felt such a big part
Speaker 1: of my identity was lost.
Speaker 3: Yeah, and yeah, it took wild to find it again.
Speaker 2: Especially when we're young, we define ourselves based off the
Speaker 2: friendships that we form. As we get older, we ground
Speaker 2: ourselves in a lot of different aspects, and our friendships,
Speaker 2: while important, become just a piece of who we are.
Speaker 2: I think when we're young, it's all encompassing, but no
Speaker 2: matter what stage and life we're in, that grief and
Speaker 2: loss of a friend is something we should hold space
Speaker 2: for and we don't often do. And I think heartbreak, pain, fear, sadness,
Speaker 2: and disappointment can be things that keep people from connecting
Speaker 2: and reaching out. And Keana doesn't let this happen to her.
Speaker 2: She's willing to open herself back up eventually, whether she
Speaker 2: realized it or not while it was happening. I think
Speaker 2: it's something that's beautiful about Keana's resilient spirits. What was
Speaker 2: a moment where you're like, oh, this person is in
Speaker 2: it from the long haul. This is something and someone
Speaker 2: I can trust.
Speaker 1: I do have one friend that when things got really bad,
Speaker 1: like when I was during that time that I could
Speaker 1: barely sit up and I was using substances and I
Speaker 1: was depressed and I was even My parents sent me
Speaker 1: to the psych board a couple of times, and when
Speaker 1: I was there, the doctors wouldn't believe my pain. I mean,
Speaker 1: it was ridiculous because I was in a psych ward.
Speaker 1: Of course, they thought I was not being serious about
Speaker 1: it and that it was exaggerated, but it wasn't and
Speaker 1: that sucked. But there's where I met one of my
Speaker 1: best friends to this day. And it's crazy that we
Speaker 1: met each other in one of the lowest lows of
Speaker 1: our life and we have both grown, allowed each other
Speaker 1: to grow together and been there to like push each
Speaker 1: other up. And it's ten years later and she is
Speaker 1: my person, like my one friend that I do trust,
Speaker 1: And if it weren't for her, I probably still wouldn't
Speaker 1: trust people.
Speaker 2: Wow. Yeah, Trusting this one friend and expanding this friendship
Speaker 2: allowed Keana to look at how she wanted to build
Speaker 2: relationships in the rest of her life, and that includes romantically.
Speaker 1: Even trusting my boyfriend was really it took a long
Speaker 1: time for me to like even be able to fall
Speaker 1: asleep next to him, because I was scared he was,
Speaker 1: I don't know, going to wrestle through my things or
Speaker 1: find some way to find me less than or not
Speaker 1: enough or inadequate. But he didn't think that, and that
Speaker 1: was all just internalized from past experiences, and he was
Speaker 1: so accepting of the fact that I had to lay
Speaker 1: down for a lot of it, and that I couldn't
Speaker 1: physically engage as much as I used to be able to,
Speaker 1: or other girls could, or things like that.
Speaker 3: How long have you been with your boo?
Speaker 1: Oh uh, I think it's almost it's like seven years.
Speaker 2: WHOA. What was like the first date or the first
Speaker 2: realization of hey, I like you?
Speaker 1: Oh my gosh. Our families knew each other growing up,
Speaker 1: and like his family's from Finland, and his dad got
Speaker 1: a job in the Minnesota Orchestra when they were he and
Speaker 1: I were three years old. He's an orchestra baby too,
Speaker 1: and we had them over for their very first American Thanksgiving. Yes,
Speaker 1: and I remember that and we walked down the street
Speaker 1: holding hands and he kissed my arm. There was just
Speaker 1: always a little kid crush, you know. And then once
Speaker 1: we once we grew up, and it was this is
Speaker 1: actually funny. My dad was looking for a place to
Speaker 1: get marijuana for me, like back in the day when
Speaker 1: they were supplying it for me. Yeah, is when I
Speaker 1: lived with them still one of Yona that's my boyfriend's name,
Speaker 1: his roommates. We were getting it from his roommates, and
Speaker 1: so I would go over there and bother him and
Speaker 1: then we would just we just started flirting and then
Speaker 1: we just started hanging out and watching ceiling TV together
Speaker 1: and it was like that was enough for him. Oh
Speaker 1: my god, that's amazing, and like it just ugh and
Speaker 1: I was enough And I still feel like I'm enough.
Speaker 2: I think in this specific American society, the concept of
Speaker 2: being enough and being worthy is something we are constantly
Speaker 2: fighting with. And this is a moment where I am
Speaker 2: in awe of how Keana accepted it. Learning how to
Speaker 2: accept that you can be and you are enough for
Speaker 2: yourself and for a partner, no matter what version of
Speaker 2: yourself that is is so beautiful and like a beautiful
Speaker 2: example of how simple and uncomplicated. Just being present with
Speaker 2: another human.
Speaker 1: Being is where I feel like a lot of people
Speaker 1: would resent the fact that I can't do as much physically,
Speaker 1: like cleaning the house, in doing things like they'll always
Speaker 1: have to carry the heavy groceries.
Speaker 3: Yeah, where other people would.
Speaker 1: Resent that, I feel like he has taken responsibility and
Speaker 1: shown me that he is not going to leave for
Speaker 1: those reasons.
Speaker 3: That sounds beautiful. I love him.
Speaker 2: This relationship has helped Kiana relate to herself in a
Speaker 2: new way. And there's other ways that Keana has learned
Speaker 2: to express herself, accept herself, and redefine who she is.
Speaker 2: Art has played a huge role in that, and we'll
Speaker 2: hear more after this break. Welcome back. As Keana has
Speaker 2: grown and gotten to a better place, there's a lot
Speaker 2: she's navigating and looking forward to today. Keana lived with
Speaker 2: her parents for a long time and is so thankful
Speaker 2: for the support. She moved out when she was twenty
Speaker 2: five and has established her own routines and a new
Speaker 2: chapter in her adulthood. She works part time as a
Speaker 2: receptionist at a church and is in school getting a
Speaker 2: bachelor's degree.
Speaker 1: I think I want to teach art, so wow, you know,
Speaker 1: and have a studio career on the side, and so
Speaker 1: that's like what I'm going to school for right now,
Speaker 1: to get my bachelor's degree and then an education minor
Speaker 1: at the same time, so that I can at least
Speaker 1: teach elementary school or maybe high school. What brought you
Speaker 1: to teaching, I guess it changed my life so much
Speaker 1: when I started to understand how to express myself through art,
Speaker 1: and it gave me such an outlet that I just
Speaker 1: I never got that teaching from schools, from art class
Speaker 1: and schools, and so I guess that's where it came from.
Speaker 1: Is I just want people to be able to have
Speaker 1: the same experience that I had, having an outlet and
Speaker 1: a place for my emotions to go when I didn't
Speaker 1: know how else to let it out.
Speaker 2: Keana has been an art artist as long as I've
Speaker 2: known her. Of course, in high school her focus was
Speaker 2: singing in theater, but when she lost the ability to sing,
Speaker 2: she turned to visual art. I've been following Keana's art
Speaker 2: on Instagram, and I really love how her art is
Speaker 2: very human, colorful, pensive, and always honest to what she
Speaker 2: needs and is going through. I think she has such
Speaker 2: a beautiful, clear perspective of self. And I think it's
Speaker 2: the sense of freedom to be your full, flawed self.
Speaker 2: When do you feel seen people look at my art?
Speaker 1: I feel totally seen when I look at all of
Speaker 1: my artworks up on a wall or like pictures of
Speaker 1: them together, and I'm just like, this is my story,
Speaker 1: this is the inside of my brain. And it feels
Speaker 1: so good to not have to say any words and
Speaker 1: to just be ab to show people, and people can
Speaker 1: just exist in this painting and understand kind of a
Speaker 1: flash of where I was at some point.
Speaker 2: Honestly, I think of your journey reminds me of free
Speaker 2: to Gallo such an inspiration for me. Really love. I
Speaker 2: love whether it's her crown of braids or her famous unibrow.
Speaker 2: I think a lot of us would recognize Mexican painter
Speaker 2: Frieda Gailo because of her portraits. There are a couple
Speaker 2: things we don't often hear about in terms of FREEDA
Speaker 2: one is that at a young age she had polio,
Speaker 2: which affected her legs throughout the rest of her life,
Speaker 2: and then when she was older, unfortunately, she got in
Speaker 2: a really bad accident and broke her spinal column, her collarbone,
Speaker 2: her ribs and fractured her legs, and yet the whole time,
Speaker 2: even through the pain, even being bedridden, she was still painting.
Speaker 2: And that force of will and process reminded me of
Speaker 2: Kiana and her strength. Listening to Kiana's story, I made
Speaker 2: the connection immediately because both of them painted despite their circumstances,
Speaker 2: but they also were painting as a way to process
Speaker 2: their circumstances. I was like, this, Kana keeps bringing this
Speaker 2: vibe to me the way she paints in bed flat
Speaker 2: on her back, yep, using a mirror.
Speaker 1: If she can do that, yeah, I can do I
Speaker 1: can use this shit. Like if she did this with
Speaker 1: all these broken bones, I can do that too.
Speaker 3: Yeah.
Speaker 2: And like, the ability to find a way and to
Speaker 2: have the will to discover and to create is huge
Speaker 2: and so beautiful and like often creates some of the
Speaker 2: most incredible and depths of art, like to.
Speaker 1: Me, totally yeah, yeah. Her portraits are just absolutely stunning.
Speaker 1: They tell such amazing stories in the way that she's
Speaker 1: comfortable with herself. That's another reason I love painting myself
Speaker 1: is it's made me really be comfortable and love myself
Speaker 1: because I have to paint every insecurity, I have to
Speaker 1: paint every wrinkle.
Speaker 3: That I see, even if I may not like.
Speaker 1: It, but yeah, looking and being able to see those
Speaker 1: flaws and still being able to put them on the
Speaker 1: page and say, this is a part of me, and
Speaker 1: I still am amazing no matter the flaw, these flaws
Speaker 1: right I see in quotations.
Speaker 2: Although Keana now has visual arts, music still holds a
Speaker 2: special magic for her. So it's extra special that she
Speaker 2: found her way back to singing. Now she sings in
Speaker 2: the chamber choir at the church where she works part time.
Speaker 3: It gives me endorphins.
Speaker 1: It is like taking a xanax literally, when I'm have anxiety,
Speaker 1: it just it grounds me and it makes all of
Speaker 1: those feelings go away. And so sometimes when I was
Speaker 1: in the worst of the worst places and I couldn't
Speaker 1: get my mind to settle my body to sell, I
Speaker 1: would just I would sing.
Speaker 2: That feeling that singing is like taking a xanax or
Speaker 2: grounding yourself as thing I highly relate to. For me,
Speaker 2: singing has always been a way of self soothing and
Speaker 2: connecting with myself, whether it's because I'd gotten anxious because
Speaker 2: of my own life uncertainty, trying to figure out what's next,
Speaker 2: or going through a loss or a breakup. One of
Speaker 2: the ways I've always processed is through singing, and I
Speaker 2: used to do it as a kid on the swings
Speaker 2: at Recess processing my day. That's how it started. When
Speaker 2: music and performance have such a profound effect on you,
Speaker 2: it's really hard not to be able to do that often.
Speaker 2: It's hard to want to hold back, and yet it's
Speaker 2: something that Keana has to constantly think about as she sings.
Speaker 1: Now, I just know what parameters I need to be
Speaker 1: able to be safe, especially like what I'm singing now,
Speaker 1: and I have to take my neck brace off and write.
Speaker 1: It's good in the sense that it makes me gain
Speaker 1: more muscle. But I also just have to make sure
Speaker 1: that I'm sitting in a chair that it has armrests
Speaker 1: because or else my shoulders just locate very easily during
Speaker 1: a lot of things, and that when people are standing,
Speaker 1: I don't have to be standing. I can be sitting
Speaker 1: and you can just do it at my pace, but
Speaker 1: don't have to keep up with anyone else.
Speaker 2: People with chronic illness are always having to listen to
Speaker 2: their bodies to know how many spoons they have, what
Speaker 2: their limitations are on any given day. And being able
Speaker 2: to do that is something I really admire. It's not
Speaker 2: always easy to be in touch with yourself or listen
Speaker 2: to yourself, no matter where your body is at, because
Speaker 2: you're always going to come up against our society's expectations
Speaker 2: around productivity, work, and capitalism. People with chronic illness are
Speaker 2: always dealing with being underestimated because we don't see how
Speaker 2: much work they're already putting in to the day every day.
Speaker 2: Guilt and shame around all of this is so real.
Speaker 2: No matter how much self compassion she has, Kean is
Speaker 2: still not immune from feeling that. One way we can
Speaker 2: start redefining these expectations is by thinking about how we
Speaker 2: take care of each other and ourselves.
Speaker 1: I'm just happy being able to be in a community,
Speaker 1: being able to show up, and because for so long,
Speaker 1: even in the things that like in my responsibilities in
Speaker 1: my jobs, I couldn't always be there, I couldn't always
Speaker 1: do it, and I felt like people saw me as.
Speaker 3: Such a slacker.
Speaker 1: So just being able to show up when I say
Speaker 1: I'm going to show up and knowing the pace, knowing
Speaker 1: how much I can show up without doing it, like
Speaker 1: it's taken ten years to get here, but man, the
Speaker 1: stability is all I've wanted Right now.
Speaker 2: She has enough spoons to go to school and work
Speaker 2: fifteen hours a week. One trip to go out of
Speaker 2: the house a day works well for her. Luckily, there's
Speaker 2: grocery deliveries and things like that that can help save
Speaker 2: her some extra spoons to let her paint and sing.
Speaker 2: One thing I want to acknowledge is that Keana used
Speaker 2: a spoon to sit upright and do this interview for
Speaker 2: close to two hours. Even though Keana does and has
Speaker 2: done so much to navigate and establish emotional and physical
Speaker 2: stability in her life, there are still things out of
Speaker 2: her control. One of those things are the financial aspects
Speaker 2: of her condition. This is something that her and her
Speaker 2: boyfriend Yona have been juggling together.
Speaker 1: We've always been like stuck under the poverty line. We
Speaker 1: can't get married because if we got married, I would
Speaker 1: lose my disability benefits.
Speaker 2: Wait elaborate on that place. How does that work.
Speaker 1: I can't have more than two thousand dollars in my
Speaker 1: bank account or else I can't get monthly disability benefits,
Speaker 1: so I have not There's no way for me to
Speaker 1: have any savings. So that is in the process of
Speaker 1: being changed to ten thousand dollars right now, and we're
Speaker 1: trying to like push it through the court system right now.
Speaker 1: But it's been like that for a very long time.
Speaker 1: And if we got married, then our incomes then both
Speaker 1: then it turns to three thousand dollars, three thousand dollars
Speaker 1: in both of.
Speaker 3: Our accounts at one time.
Speaker 1: And because of his income, I wouldn't then qualify anymore
Speaker 1: because he makes a normal amount and I wouldn't qualify
Speaker 1: it anymore. There's no way to set up someone for
Speaker 1: success in this program because you can't save. And I'm
Speaker 1: trying to get my de grease so that I can
Speaker 1: eventually get off of this and then save some money
Speaker 1: and get a retirement account and all those things.
Speaker 2: But it's ridiculous.
Speaker 3: It's they won't let you succeed.
Speaker 2: It's crazy that we're linked to give someone benefits to
Speaker 2: help them because we know they need it, and yet
Speaker 2: it's only enough, like only just enough, and it keeps
Speaker 2: you under the poverty line. We all have these beautiful
Speaker 2: hopes and dreams, and it's hard when you're like, oh,
Speaker 2: I can't plan for the future. I can't save any money,
Speaker 2: whether it's for a medical emergency, a rainy day, if
Speaker 2: you lose your job, or if you want to move,
Speaker 2: any additional life cost you can't prepare for if you
Speaker 2: want to claim these benefits, And that's a catch twenty
Speaker 2: two that feels like we're not actually helping people out
Speaker 2: and ends up creating a crazy burden on people who
Speaker 2: shouldn't have to deal with that. It's one way to
Speaker 2: make people's needs invisible. I know we've talked about the
Speaker 2: topic like a little bit, but just to ask the
Speaker 2: question out right, when do you feel invisible?
Speaker 3: Yeah?
Speaker 1: I felt invisible for a long time before really trusting
Speaker 1: my own instincts and believing myself first and then having
Speaker 1: the courage to tell other people what I needed and
Speaker 1: things like that. And for a while I wasn't seen
Speaker 1: and I wasn't heard by my friends, people around me,
Speaker 1: by my parents, by the medical system, and that hurt
Speaker 1: a lot.
Speaker 3: It really made me.
Speaker 1: Very discouraged for a very long time because I felt
Speaker 1: so desperate and there was nothing I could do about it,
Speaker 1: and it just felt like my desperation was just invisible,
Speaker 1: Like no matter how much I kicked and screamed, no
Speaker 1: matter how much I cried, I would get gro out
Speaker 1: to the emergency room and then get sent home without
Speaker 1: anything having been done. And I finally found an amazing
Speaker 1: general practitioner and I've been with her ever since. If
Speaker 1: it weren't for somebody taking that chance on me and
Speaker 1: that doctor saying you should try this option, like, I
Speaker 1: don't know where I would be today without it, that's beautiful.
Speaker 2: So much of this conversation has been about Keana's personal
Speaker 2: journey and her inner strength, and this moment reminds me
Speaker 2: that the people around us, our community, can help us
Speaker 2: be seen and to be strong. What would you tell
Speaker 2: someone who's just starting off or experiencing the beginning of
Speaker 2: chronic illness or pain.
Speaker 1: Don't give up on yourself, and there's always a way
Speaker 1: to still do what you like and to incorporate you
Speaker 1: into your new body. My body, I was so I
Speaker 1: used my body all the time. I talked with my hands,
Speaker 1: I fling my head around. I'm flamboyant as hell, But
Speaker 1: all of a sudden I had to bring it in
Speaker 1: and I couldn't move when I talked, and I felt
Speaker 1: like fifty percent of my personality was gone.
Speaker 3: But that's just not true.
Speaker 1: It's all in here and the people who are patient
Speaker 1: enough to sit with you and see it are the
Speaker 1: people that you want to stick with you. And I
Speaker 1: would say, don't conquertize on anything. You do not know
Speaker 1: what's going to happen, and something that happens that is
Speaker 1: seemingly negative may end up being something that is a
Speaker 1: positive later in life. And I would say that I'm
Speaker 1: a better person because of all of this. I feel
Speaker 1: like there's more.
Speaker 3: Meaning now in my life.
Speaker 1: I have a higher power that I've found through all
Speaker 1: of this. I like the person who I am and
Speaker 1: like because of all these things that I've been through.
Speaker 2: And who do you feel like you are or who
Speaker 2: is this person you've come to really like?
Speaker 1: I'm empathetic, I'm kind, I'm charismatic, I'm silly, and I
Speaker 1: am the best version and the happiest version of my
Speaker 1: childhood self. Feels like I've finally been able to bring
Speaker 1: all the things that I used to feel self conscious
Speaker 1: about and the person that I would try to be
Speaker 1: that I really wasn't. And it feels really good to
Speaker 1: be able to be an adult that I really like
Speaker 1: and that I respect and that I know that I'm
Speaker 1: doing the best that I can.
Speaker 3: That's why I like myself.
Speaker 1: I know for a fact that I am doing the
Speaker 1: best that I can, and I'm pushing myself in places
Speaker 1: that other people would probably not. Who knows, I don't
Speaker 1: know that, but I work hard, and though it may
Speaker 1: not look like that on the outside, with how much
Speaker 1: work I make or how much my schedule is filled,
Speaker 1: I know how much I'm putting my body through and
Speaker 1: how much willpower I have, and I'm proud of that.
Speaker 1: I'm proud of it, and I'm proud of the fact
Speaker 1: that I'm bringing that. I'm singing again, even though I
Speaker 1: have to take my neck brace off and it's scary.
Speaker 1: So I'm proud of doing the things that are scary
Speaker 1: and trudging forward even though I don't know if I'll
Speaker 1: be able to have a career, a successful career. I
Speaker 1: don't know if my body will hold up, but right
Speaker 1: now it's doing it, so I'm going to do as
Speaker 1: much as I can to get there.
Speaker 2: Keiana's light and kindness have always been a part of her,
Speaker 2: and it's so beautiful to see how she's carried herself
Speaker 2: through dark times and how she's vulnerable about sharing her
Speaker 2: experience to help others in so many ways. Dealing with
Speaker 2: something so massive yet invisible, Kiana still is able to
Speaker 2: shape a life that she wants for herself, something that's
Speaker 2: based in community. I think it reminded me that I
Speaker 2: need to lead with grace and kindness and try and
Speaker 2: be as understanding as possible, and that the only way
Speaker 2: I'm going to know how to treat someone better is
Speaker 2: by asking. Next week, we'll meet a teacher in Baltimore
Speaker 2: who shows up for black young people in his community
Speaker 2: every single day. Mister j teaches at the high school
Speaker 2: he once went to, and I wanted to know what
Speaker 2: it's really like to be in the classroom day in
Speaker 2: and day out.
Speaker 3: It's rare to have black male teachers. Every lesson doesn't
Speaker 3: have to be on a front board.
Speaker 2: Sometimes I am the lesson and I'm also the testament.
Speaker 2: More on mister Jay's journey next week. Thank you so
Speaker 2: much for listening to When You're Invisible. Please leave us
Speaker 2: a rating and a review to let us know what
Speaker 2: you think. You can find this episode and future ones
Speaker 2: on the iHeartRadio app, Apple podcasts, or wherever you get
Speaker 2: your podcasts. When You're Invisible is a production of iHeart
Speaker 2: Podcasts and Mike Purdura Podcast Network. I'm Your creator and
Speaker 2: host Maria Fernanda Vies. Our story editor is Dylan Hoyer.
Speaker 2: This season was produced by Me with additional production from
Speaker 2: Dylan Hoyer. Sound designed by Laurence Stump and Me with
Speaker 2: additional support from Dylan Hoyer, Mixing and mastering by Laurence Stump.
Speaker 2: Original theme music by Tony Bruno. Our executive producers are
Speaker 2: Anna Stump and Gisell Banzes, and special thanks to our
Speaker 2: Lean Santana