The Landscape

Ryann Kress, RN on Ehlers-Danlos Syndrome & Lack of Mental Health Supports

November 29, 2020 Naveh Eldar / Ryann Kress Season 1 Episode 21
The Landscape
Ryann Kress, RN on Ehlers-Danlos Syndrome & Lack of Mental Health Supports
Show Notes Transcript

Ryann Kress, known as Chronically_Ry on social media, is a registered nurse, disability advocate, adaptive athlete, speaker, model and current Ms. Wheelchair Virginia. The first platform Ry ran on was the need for mental health supports for individuals who experience mobility disabilities. She is tattooed, has a partially shaved head, and is as fierce as she sounds. You'll hear her speak about mental health, her personal journey with EDS, ableism, her favorite Broadway play, and more! You'll love her as much as I do, and make sure to follow her on social media. The links are below:

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Naveh Eldar  0:16  
Welcome to the landscape, a podcast to shed light on the people programs and businesses that are changing the landscape for individuals with any type of disability. I'm your host Naveh Eldar. If you haven't listened to the last two episodes, shame on you, and this is the third interview in a series featuring past and present winners from the MS wheelchair competition, which is a competition to judges on advocacy, and the ability to impact the world through disability education and inclusion. Today's guest is Ryan Kress known on social media as chronically Ry, who is a registered nurse, adaptive athlete, speaker, model, current Ms. Wheelchair Virginia, and was diagnosed with EDS at the age of 16. Ryan is a fierce voice and advocate relentlessly and passionately. She starts today's conversation, talking about why she chose mental health support as her first platform when running for Ms. wheelchair Virginia

Ryann Kress  1:22  
is in this wheelchair pageant. It's a an advocacy based pageant. And so we are encouraged to come up with a platform and for the your favorite speech you ever give just for the competition is just you advocating for your platform and saying you know why you chose it. And so my first platform, since I have two years, I have two platforms. My first platform was advocating for mental health services for those with specifically mobility limiting disabilities, because I had to kind of tone it down. I chose this platform because I work as a nurse case manager in hospitals. And as a nurse case manager, I am the one who if a patient came in and asked for outpatient mental health services, or just you know, hey, you've been diagnosed with something that's life changing, you know, let me suggest some mental health services for you, that would be my job to come in and give those to them. And I knew it wasn't happening because I'm not giving them to anybody. Like that's not really part of my job where I think it it really should be because when me myself was transitioning to from walking with a cane than form crutches and then a wheelchair, I was never talked about that. That incredible loss that you're experiencing. And it's it's absolutely a grief process, you're losing a part of yourself that you want to do very well, you're losing independence, mobility. And because of that, it takes a huge blow to your mental health. But if you are not, you know, someone who has had mental health services before or works within, you know, you don't really know what's out there. And you don't realize that this is a time where you really need to be seeking that out and watching out for your mental health. Because I I had an awful grief reaction when I was transitioning, went through periods of depression and started experiencing anxiety for the first time my whole life. And I didn't know what was happening to me, and I'm a trained nurse. I started polling people around me, I play wheelchair basketball. So I started pulling people on my team, because whereas my disability was gradual and from birth, most of them were in traumatic accidents or things like that. And I started asking them, especially spinal cord injuries that were in car accidents. So hey, you know, when you were in the rehab hospital, or at any time, where you offered mental health services, or even just say, like given a heads up, like, hey, you've been through a loss, you just might want to, you know, keep an eye out for these things. Not a single one. So I went to my ones who were born with disabilities. I said at any time, did anyone you know come to you with this suggestion of mental health services? And they all said no. And then I had a friend that has like, this one's going to have it. He was nine years old. He had a spinal tumor, they removed his spinal cord from Nicholls down. And like he was at a major Research Hospital. And I went to him and his mother and I said, you know, did anyone talk about mental health services in this situation? And this was cancer, a massive loss of childhood have, you know, the normal teenage years and not at all and his mother actually works as a case manager with me and she had to go and seek him out herself.

Naveh Eldar  4:41  
Wow. So I mean, you just have such a unique background because like you said, you went through it yourself. And then you're also it's also your job to supply supports the people and those supports aren't there. So let's back up for for the listeners now and let's talk about when you are going through it. So I understand that you were diagnosed originally for six at the age of 16. But obviously things were going on before the age of 16. So how what did that progression look like? Sure.

Ryann Kress  5:12  
So I was diagnosed with Ehlers danlos Syndrome at age 16. And Ehlers danlos Syndrome or EDS, a little easier to say, is a genetic collagen deficiency that causes all of the collagen in my body to be too stretchy. And your collagen is really the glue that holds your body together. So your skin is made up of collagen, your joints, your muscles, your everything. So EDS affects almost all aspects of the human body. But each patient is a little bit different. EDS is very rare. So there's not a ton of research about it right now. And with so right, as it stands, there are 13 subtypes of eds. So there's just such a spectrum of what these patients look like. So that's why diagnosis generally takes I mean, for some people, 20 to 30 years, because you come in with these weird symptoms. So my only symptom I can remember from a child chat. Well, looking back now I found more but my main one was I was born with a shoulder that would dislocate over 100 times a day. So

Naveh Eldar  6:27  
I read that and I didn't believe it. So that's that's a real number.

Ryann Kress  6:32  
Yeah. Oh, yeah. Because it was any time that I would raise my arm above shoulder level, it was going to pop out a socket. And I had what's called multidirectional instability in my shoulder, it turned out to be both shoulders, but one was much more effective when I was a kid. And I always used to joke and say, you know, it's my trick shoulder and I could get out of a straight jacket if I want to do and do all these crazy flexibility tricks. And as I aged, that what's called hypermobility, so all of my joints being what some people think of as double jointed. got worse. So it It started affecting both shoulders, all my fingers. I mean, it affects every joint. And so when I was 16, I was actually about a year prior to that my sister had symptoms of another genetic disorder called Marfan syndrome. And so her doctor wanted her to get checked out at a geneticist. So I went with her. And I said, You know, I took her to the appointment, I was just in the room. And once they examined her, they said, Oh, you're her sister, would you mind changing into a gown? And so they looked at me and they're like, you know, I don't think you have Marfan syndrome. But I do think you have Ehlers danlos Syndrome. My sister has some of the hypermobility, but she's not affected like I am. She does not have eds. It's just me. And so that, that appointment, I inadvertently, you know, showed up for my sister and ended up getting diagnosed with a life changing disability. And I think the question I get asked the most because I was 16. They're like, Oh, my gosh, how devastating was that for you? I said, Well, it wasn't because I was a dumb, 16 year old and I was like, I just got to flap your shoulder. They said, well, you'll be in a wheelchair by the time you're 20. I said, we love.

I'm dancing. I

was a ballet dancer. I was running jumping. I was in the marching bands, like I it didn't affect me. Right. So it didn't really come off as such an issue. But as I aged, we found more issues. I continue to dance off in college and my hips started to dislocate. And I started I could do wrong commands and as kind of a trick and then it slowly progressed to the point where I it was every time I took a step. That hip is just kind of slipping out of the joint.

Naveh Eldar  8:48  
How old were you when this was happening?

Ryann Kress  8:52  
24 ish. I'm 28 now. Okay, so 24 so I was working as an ER nurse, and it had started to kind of happen and that instability in my hip. It's kind of like a cascade. It led to me kind of having to walk strangely. So my knees would dislocate my ankles. And I started experiencing you know, frequent fall frequent falls, which is not great as a rough and tumble ER nurse. So I was walking with a cane, for the most part outside of my job. It slowly progressed to forearm crutches, but I would still work I'd use it to do the forearm crutches get in and out of the building, I would hide them. And it was a small er, I was working at the time and I could use the wall if I ever felt unstable. And I mean every day getting dressed for a shift, I had ankles and knee braces, my hips were wrapped and all of this was under my scrubs and nobody could tell but I looked like I was suiting up for battle. So I use those and I think, I think I was learning for crutches and I was just like this is I'm too unstable because putting that pressure on my wrists and my arms were causing them to dislocate. And it was just this slow but sure, kind of downward spiral to my eventual wheelchair. So yeah, that was kind of that cascade.

Naveh Eldar  10:23  
And so you You are very active in high school you mentioned it's um, you were marching band, you danced, you're very into dance. You were the lead, if I'm not mistaken in a high school production musical. Is that correct?

Ryann Kress  10:35  
I was Sandy in grease.

Naveh Eldar  10:38  
You all my gosh, stop it. Only like my favorite. Yeah, we have to talk after the show now. So you went you went from that, but you were diagnosed at 16. And then you became a nurse. Right? So you're in the medical profession. And so as this was happening to you, when did it start becoming real? Because you said you were in a bit of denial in the beginning. So at what age did it did you start going okay, yeah, this there's a possibility I may end up in a wheelchair one day.

Ryann Kress  11:08  
So it wasn't even. It really wasn't until. So I said that I become an ER nurse. So the background on that is when I was in high school, I was in the ER all the time for falls for head injuries for things that, you know, oh, she's just a really active, clumsy kid who didn't know it was from my joint instability. And so my mom at one point made a joke that if you're going to keep going to the ER, you might as well get paid to push a stretcher.

Unknown Speaker  11:37  

Ryann Kress  11:38  
I was like, I took that I was like, Well, alright, you dared me. And so I signed up to be an EMT. And I ran rescue all through high school and college. And when I was in college, I tried studying other things that kept God getting drawn back to that clinical bedside of nursing. And so I ended up going to nursing school, becoming an ER nurse and realizing that this was just my dream job. I loved working bedside in the ER, it was the best thing I've ever done. And I was working to become a flight nurse. That was my goal. And I was taking all these classes and training out of state and everything about the time that my mobility started to become affected. And so I was in such denial and because I kept just balancing. I mean, my doctors have been telling me that I should not be a nurse my entire life.

So I was okay to that.

pushback. They're like, Man, you're gonna destroy your joints. I'm like, No, no, I got this covered. I'm doing this, well, it's fine. And I would use my mobility aids outside. Even when I realized that I needed to leave the bedside, I was still in denial. So much that I took a job. The job that I'm doing now is case management, which is still bedside but I'm not clinical or hands on. And I was using my wheelchair. And my plan was to still continue picking up shifts in the ER. But it ended up that my hospital messed up paperwork. And there wasn't actually a way that I could work both of those jobs. And it wasn't anything related to my disability. It was one was a salary job, and one was hourly. And they couldn't fix that. All right, in the company I worked for. And I remember, it was my like, second day as a case manager and the fact that the ER was ripped away from me. So suddenly, when I wasn't prepared to give it away. That was the day that I was like, Wait a second. And I mean, I remember just sitting like, I am not like a girly girl crier or anything like that. And I was bawling at my desk, because it literally, I mean, it was the loss of this dream job that I had always wanted. And I realized that like, there was no way even if I thought getting back to the bedside in the ER setting, I would never personally be able to do it from a wheelchair. Because the fact that I'm not paralyzed and I can get up, I know myself and the second I see a patient go down, I'm getting out of that chair and running, even if it sacrifices all my joints. So it took about I've been this job. About two years ago, it was the summer before I won this wheelchair.

Naveh Eldar  14:20  
Okay, yeah. Wow. It's so it's interesting. It was not interesting. I guess it's expected that we often want to make an impact where we wish others had made an impact on us, right and so you, you picked, you know, mental health as as what you want to advocate for and you've been very open that you struggled, you had some real struggles that impacted your life with that. I don't know if you feel comfortable sharing that with us.

Ryann Kress  14:46  
Um, so because I I didn't really realize what I was going through. And that time I was married and was living in a household With another couples just the way that we lived, and they kind of experienced that entire loss with me. But because I was in such denial, they didn't know how much I was struggling either. And they didn't know anybody with that, you know, a major disability change to their body or anything, they didn't realize that I was going through this awful grief disorder. I mean, that grief reaction, and I basically, had gotten so depressed and so self loathing that I just I wanted to be anyone who wasn't me. And so that led to some self harm that led to I mean, panic attacks daily. It led to me having affairs and ended up, you know, ending my marriage. And it was, it was an awful time period in my life that you know, now. Now, me and my ex husband are great friends. And it's,

Naveh Eldar  15:59  
I was actually curious about that.

Ryann Kress  16:01  
We're friends. We're still separated. But that's, that's for the best. But um,

yeah, no, I mean, I

lost my home that I was living in, I lost my, my, all of my support systems, I moved back in with my parents at the age of 28. And I was the house that I was living in before this was, we would joke even when I was living there, the most inaccessible house in the world. There were 16 steps to the front door. And then no full bathrooms on the first floor, it was like almost two flights of stairs up the actual full bathroom.

Right. So it was just, there was

no way that I could use a chair in that house. And the fact that I was so frustrated because I was building this life in this home, that now I couldn't anymore. And I am one of those people that like, Don't tell me, I can't do something. So that was a huge blow to realize that suddenly, there were so many things that I couldn't do. And trying to accept that was a it was a long journey for me. I mean, I still deal with that, and I will for the rest of my life. And that's just something that comes with, you know, having mobility issues and that kind of thing. But yeah, that's definitely why I wanted to advocate for that. Because, you know, it was not offered to me, I didn't know what I was going through. And so way after it happens, and I know a lot of friends of mine, experienced the same situation.

Naveh Eldar  17:38  
And what helped you to to come out of that depression, what helps you to move forward

Ryann Kress  17:43  
sheriffy immense amounts of therapy now, okay. No therapy was was step one for me. This the second that I had reverted to self harm. I was like, You know

what, nope, nope, that flip switch.

This is not me, this is not something that I've ever done in my entire life. We got to fix this. So I got therapy. And then from there, simply learning more about this disability community that I was suddenly a part of, and ironically enough, my best friend was already in a wheelchair. And so I knew him and he's a coach for a wheelchair basketball team. And he knew he's known me since I was ambulatory. And so he knew, and he was just like, waiting. And as soon as I was, quote, unquote, disabled enough, he's

like, you can play basketball. And

I was not a traditional athlete growing up, right? I was dance and theater and marching bands. Like, dude, this is not my thing. I don't even know how to use a wheelchair yet and you want me to learn how to play basketball in a wheelchair? No, I remember the first day, he had me sign up. And he's like, okay, now I'm gonna teach you how to do a layup in a wheelchair. And I said, Okay,

what's the layup? He's like, all right, they're gonna start it, baby. Number one,

Naveh Eldar  19:13  
this is a patient guy.

Ryann Kress  19:15  
Bless the lesson.

So just getting out there and realizing, you know, there's this higher community and better so ridiculously supportive. And because they've been there and having that, you know, in common that you've all been through some sort of mental struggle that comes with, you know, dealing with living in a world that's not built for you.

Naveh Eldar  19:40  
And I also heard, I say, heard that I read but I'm tired of saying I read write makes me sound nerdy. I read too much. I also read that you started. First of all for the listeners you have. rye has a pretty nice sized following on social media, and I and it's chronically And I'll put links to that in the description of the podcast. But understand you started that also as a way to help you cope, as well as to educate others. So what age did you start that? And when did it become serious? Because you're, you're very active and you have excellent content on it. I really do enjoy it. Thank

Ryann Kress  20:18  

So I started my Instagram. It's about three years ago now. It was right before I started relying on foreign purchases, I had started using a cane here and there. And because I was diagnosed, so yeah, I kind of joked that I had this elevator speech that I always told people like, hey, yeah, I have this, this thing called EDS makes me really stretchy and bendy. They say I'm going to be a wheelchair by the time I'm 20. But fine now, like, that's what I would tell everyone. So that's all anyone ever knew. Unless you knew me really well, and saw me like on a bad day or something. It was an invisible disability at that point. And so because I was starting to require more surgeries require more everything. I said, you know what I'm going to start this Instagram just as a way to kind of teach, I was mainly focusing on my own family members, and people like I went to school with that have known me my whole life, but didn't know really how much EDS does affect the body. And so it was kind of just me, venting and showing off new weird accessibility tricks that I had figured out and just ranting about, you know, being a nurse and kind of things, it was just, you know, it was it was kind of a diary at first and then all the sudden, it just took off. And I don't really I mean, I looked it up and a year ago, today, I had around 1000 followers. And now I'm almost at 6000. And so very, very steep curve after Miss wheelchair, for sure. But before that, I really when I started getting even just a little bit of a following, and I had these young girls reaching out, they were struggling with the exact same things I struggled with. When I was diagnosed when I was diagnosed, you know, social media wasn't very big, yet, there was little to nothing on the internet about eds. So I'm being diagnosed with this disorder that I've never heard of half of my doctors have to Google. I've never met another person with it in my whole life. And I have absolutely no one to compare myself to no one to say, you know, like, this is what an EDS patient looks like. None of my doctors can tell me, you know, what's my life gonna look like in 20 years? Can I have kids? You know, nobody could really say, and I was like, Well, you know what, now that I have these people, like, I'm just going to teach about what it was like, for me getting diagnosed earlier than most. And now, you know, because I am a registered nurse, I can kind of teach from those two different camps, right? So I can I can speak the medical jargon. But I also know how to speak like a normal human. Right. I also work in a very rural area, so you get really good at translation. But um, yeah, so that's, I mean, that's really what it started, as was just me saying, Hey, this is my life, this is what I deal with. And I'm pretty much an open book in real life. Anyway, I'm really out there and answer anybody's questions about it. And the more visible, my disability has become, you know, the more comfortable you have to get kind of dealing with that, because you get it everywhere you go. You're in a neon colored wheelchair, we are gonna talk about it.

Naveh Eldar  23:46  
So I in the first you know, this is the you're the third in this series of my interviews with Miss wheelchairs from their respective states. And I mentioned in the very first one that I found you guys all in three different ways one reached out to me, one I was introduced to by a previous guest who was on the show. And then when I reached out to you, and that's you, like, I reached out to you and one of the reasons why social media is interesting because you end up following like a lot of people more people than you can truly follow. So you end up following like a few people really, right. And one of the reasons I follow you is because even though you have kind of like this really big platform, you're so honest to yourself. And so like you drop the F bomb, you get political you're like you're like rolling down hills, celebrating the election. I mean, it was it was your so I appreciate I really appreciate that about you and knew that you would be a great guest. So that's just me, fawning over you right now. So now let's get to miss wheelchair competition. How in the world did that happen?

Ryann Kress  24:56  
Oh, so um, I I have modeled a little bit on the sides since I was a kid because my grandparents were photographers. So growing up, I would help my friends that were photographers out and just sit in front of a camera for them. And so I knew how to find light sources. I knew how to model Elsa. So one of the photographers that I had scheduled shoot with is actually the photographer that shoots all the witness wheelchair, Virginia shoots but also does Miss Virginia and all these other pageants things. And so he hit me up and he said, Hey, you know, he'd known me since before I was in the chair. He said, hey, there's this, this wheelchair pageant you should enter. It's Rona. from where I live, and I'm like, I'm sorry. Have you seen me? Like I got I'm covered in tattoos, most of my head is shaved and every other word is a curse word.

I am not a pageant girl.

I am an ER nurse. Like this is not my I don't do the gown things like just try. It's an advocacy based pageant. You already had this platform that you're running like, you'll be good at it.

Alright. I'm glad you think so. But

so I went out with no intention of winning at all. Actually, I always forget this part of the story, because I didn't understand how pageant years work. So I was actually crowned November 9, November of 2019 for 2020. But the way that the poster read it said this wheelchair 2020. And so I thought that I was signing up for a competition a year from the gotchu. And I had a whole year to like, fundraise and prepare. And so it was the Sunday night before the pageant was on the next Saturday. And a friend of mine because we're, we live in a small area. And if you're in a wheelchair in this town, I know you. You all steal my parking spaces. One of my friends was going to be a judge. And he reached out to me and he said, Hey, we are short on judges. Would you like to be a judge for the pageant this Saturday? And I said, Sure. I'm actually I think I'm competing next year. I'm like, that sounds great. I'm totally for it. And he said, Well, let me just I said, Oh, Is there like a conflict of interest? Since I'm gonna try and run through this? I get like, two seconds later, a


phone call. She's like, what I thought you were competing on Saturday. What are you talking about that you're not competing till next year. I'm like, wait, Saturday, I have never done a pageant my entire life. And you want me to do it together in a week. I said in a week. I said, if you think that I can do this and actually throw this together in a week, I will do it. And she goes, I think you're fine. I said, I think you're pulling my leg. But I did. I rewrote oh my gosh, I rewrote that speech at least a million times. And the best part of all that is I didn't even look at it when I gave it. And since then I've never written another speech I gave it.

Naveh Eldar  28:04  
I'm not doing

it. So obviously. You surprisingly one

Ryann Kress  28:10  
I did. I did when there were four of us. Three of us. dropped off last minute that competed. And I did I was when I said my name. I think I blacked out.

And, and then like, the next day,

I remember coming in and there was there's actually a contract that you have to sign because you have like before COVID you are contracted to do so many speaking engagements and mines and like so and so. And that's when it hit me I'm signing this thing. I'm like, wait,

I see what, what. I've only been in a chair for 18 months. I'm supposed to be like, a disability. Right? Yeah, so it was, I was a little mind blowing for sure.

Naveh Eldar  28:57  
But you own it. Like you ride around in your car with your crown on and stuff because you do for people who will surely go follow her after listening to the interview. You do a lot of kind of like words of wisdom or venting or whatever you're doing for that day from your car. And so sometimes you're like, wow. And I just love it because you don't you totally don't look like the person who would do that. So it's very ironic, and which makes it even greater.

Ryann Kress  29:25  
It's awesome when people who it's like companies or things that have always had this wheelchair come to their events, and then I show up and they're just like, sorry. And they're always it'll be like a very straight laced event.

Unknown Speaker  29:39  
They'll be like, what's your Instagram? I'm like,

Ryann Kress  29:43  
Oh, no, this is Oh, they always love it. I don't Yeah, I'll take it.

Naveh Eldar  29:52  
So what has been some of the impactful events that you did for you because like now, like you said, you're like I wasn't expecting to be advocate by imagine, like out in the public, like really not just from Instagram, but from like going to events? Was there any event that I don't know if it was like at a hospital or whatever that just really kind of moved you? Or did you just got a very good reaction from the audience,

Ryann Kress  30:18  
I have two that come to mind that really, really stand out. So when I was first in wheelchair, you do a lot of self advocating and kind of finding your own things just because it's a smaller organization, especially in my state. I'm very good friends with the Miss Virginia Miss America people but like they have a staff that finds their events for them and kind of goes through. So my very first event, I was the keynote speaker at my hometowns, tree lighting.

Naveh Eldar  30:47  

Ryann Kress  30:49  
I can disability based event. So my first one of my very first like, big events, I was a speaker at a women's conference here in the area. I mean, it was about 400 500 people there. And I remember rolling in there and seeing Miss Virginia up on the stage speaking and I'm just like, I have to do what they're supposed to follow that. And because they always bill us together if we're in the same place.

Naveh Eldar  31:17  
Uh huh.

Ryann Kress  31:18  
Okay, so it's this giant women's conference, and it's full of people that I don't know anyone, and I roll up to the stage to go start speaking. And we realize the last moment that there isn't a ramp to get me on stage. Oh, no,

I'm like,

as good this is we're gonna, this is gonna be a teaching moment. So I mean, the only way I could do it, I got a photographer to come and help me. So I would I transferred out of my chair onto the stage, and he picked my chair up and put it on the stage. And I crawled up into my chair, on stage in front of everyone. So because they had to kind of see my disability in action for themselves, got their attention real quick, and they see me do this. And I mean, it's athletic to like transfer yourself from the floor back up in a chair, you have to hurt, it took me a year to be able to do it. You know, lift your entire body weight with just your arms, and especially in front of the crowd that large. And so when I started speaking, and you know, I'm, I speak to crowds and everything, just like I speak here, you know, I crack jokes and everything, and I, I'm bad about, you know, belittling my disability a bit. Because for me, that's just has always been part of the job. Well, for this one, I didn't, I said, you know, you guys have seen it. You've seen how it affects my body. And you know, and that was the very first time I got a standing ovation. And I still have people in the community that will stop me on the street, and they're like, Oh, my gosh, like you don't understand, I recorded your speech. And I sent it to my mom in the hospital who just had a stroke and needs a chair. And it was just all of these people coming out of the woodwork suddenly telling you just how much my story affected them. When I first started speaking with this wheelchair, I spoke almost exclusively just about my platform, I was kind of just this mouthpiece. And people started actually requesting me to tell my story and tell what I've gone through and what my experiences had been be, you know, becoming quote unquote, visibly disabled in my late 20s. And since doing that, I've had that, I mean, that's been the spike in my Instagram followers, that's been the spike in my speaking engagements. And it just blows me away every single day that, you know, so many people relate to my story so much. And I mean, it's so healing for me.

Naveh Eldar  33:51  

Ryann Kress  33:52  
Because then, you know, I'm meeting people who are going through this exact same thing. And, you know, I actually, because I mean, that's, that's my love language is helping people. And then that's why I love nursing so much. And so the fact that even though I lost that huge part of myself that bedside hands on nursing piece, I am still able to help so many people just by, you know, doing what I'm good at running my mouth.


lately, I had an instance that I teared up a little bit it was it was a good one. So I recently had abdominal surgery, and a lot of scars from this. And it was the week after surgery, maybe two weeks after it was really seen after surgery. I had forgotten that I had a speaking engagement in Richmond, Virginia, which is about three hours from where I live, and it was in the middle of the week. There was no one else who could drag me there. But it was one that it was a group out of Richmond that works with a lot of intellectual disabilities and everything in giving them employment and they had Have a bunch of our portraits in a museum. And you were unveiling this, this beautiful project. And so I drove myself there, it was awful. I just stopped all the time just because my body was not ready to travel. But and I always like, I don't understand what I'm going to speak about until like, right before it hit me right then like, I remember being at a stoplight and taking my phone out and being like, no, the reason that I traveled, you know, so much, so far right after surgery is because how much this matters to me and how much this me going coming here and sharing my story with you all, you know, talking about the fact that, you know, I may be in a chair, but that doesn't negate my ability to, you know, be the person that I want to be whether that's a nurse, whether that's a public speaker, whether you know, whatever that is, and that was kind of the theme of that, that event. And so I'm speaking and I told my story, and I talked about how I had surgery. And I, every time I wear the crown, you know, tiny little girls love it. They're like, Oh, my gosh, the princess. And so this little girl, she's maybe three, she's old enough to understand what she was hearing. And she came running out to me, she's a princess. And her mom said, Do you want to show her your scars. So she had abdominal surgery when she was a child that she had a disability from it. And she was born with her intestines outside of her body. So she had an abdominal scar that was identical to my new scars. Oh, so my way I'm sitting there showing my belly, three year old and she just starts laughing and showing and taking pictures. And she's just like, she'd never seen another person that looks like she did.

Naveh Eldar  36:43  
Oh, wow. And

Ryann Kress  36:44  
so for me to be able to be that person and the this, you know, this awesome advocate for this little girl that you know, she probably will not remember what she you know, seeing me and everything, but I will never forget that child.

Naveh Eldar  37:01  
Let's get into some because I know one of the things that you'd like to do is just address. You know, ignorance can sound like such a harsh word, but it's truly the ignorance is a lack of knowing, right? You'd like to address things that and you've admitted to yourself that like, you know, before you went through things you didn't know, none of us knew. And I learned so much from doing this show from from the people that come on. So you have a quote, If I can read it really quick that says when you got your will wheelchair, it felt like someone gave you wings after years of walking with stones in your pockets. First of all, it's very poetic and beautiful. But that's just something that's not people that don't have a wheelchair, think of it as a burden, and you're talking about it as wings. So, so explain that to us.

Ryann Kress  37:52  
Sure. Um,

so specifically for me, my with my disability, I because I you know, I lived with it for 16 years before anybody told me there was anything wrong with me. And you know, you don't know that something isn't normal Unless, you know, somebody points it out. So it, I remember so clearly the day that I got my chair and I the first day I took it to a store, I think we went grocery shopping or something, I have never been able to walk through stores without getting I mean, I'm always exhausted at the end of it. So Ehlers danlos affects my blood vessels. So it's very hard for me to keep my blood pressure up. And so standing for a long time, or any kind of changing positions is very difficult because my blood pressure bottoms out. And I explained it to people like that feeling where if you stand up too fast, or you feel like you're gonna faint, and everything goes black. Every time I change positions is what that feels like. And so I remember the first day that I had my chair, I'm just suddenly like, not only are my legs not killing me, and not only is this helping with my mobility, I'm not having that the blood pressure issues, I'm not having the headaches that that causes I'm not having the brain fog, that that causes the kind of confusion that you get, oftentimes similar to if you're sick, and you're like, I just can't think straight. It's that kind of a sensation. And so just sit my butt in the chair with four wheels. I'm just like, I am a different person. I have so much more. And I mean, I've always dealt with insomnia and being exhausted during the day. I've had all these other issues that suddenly just clicked when I got my diagnosis. And I started really researching what it meant to my body. And so getting this chair, suddenly I'm able to play sports that actually I could never I could never run ever I thought I just hated it. And it turns out No, it's just horribly painful. I'm so happy I'm able to play sports I love like going to the gym and lifting weights, which is something I could never do standing. Just it opened all of these doors for me and just completely changed my life in such a positive manner. And that you're right is it's really hard. But people don't understand that unless, you know, personally know someone with a chair or you know, know me. That's you think of a wheelchair as well, that's a ball and chain. And that's a death sentence. And you know, that's going to ruin your life, you were this active person? And now you're not, no, I'm more active now.

Naveh Eldar  40:41  
Right? That's issue number two, I would like for you to address we're going to address three issues, which is that if if when people see individuals in wheelchairs, they assume that they're not very active, that they probably don't work. Obviously, you your story up to this point is proof that that's just totally not accurate. So, again, for somebody who may be young, in diagnosed, or even if this was something different, if you can tell them a little bit about how active you are what you're able to do, just share that with them.

Ryann Kress  41:15  
Yeah, no. Um, so I I work full time at my hospital, I'm still on the floor. I am the only nurse in a wheelchair that works for my hospital and the only nurse in the wheelchair we found in the state of Virginia.


I know I work full time, I am able since COVID has happened. I've even been able to get back at the bedside with my chair and kind of start proving that that's even a possibility. That's the next step. Now with that I play a wheelchair basketball team. I mean, I got with friends. I always joke and I was my spoke about how one of my best friends is in a chair. And I always think back to before I was in the chair before my disability became became more visible. I, myself did something to him that I now eat, which was when I got married. I got married outside in a very rural place that had no pavements, no ramps, it was an old paddle, auction bar and ramble. So I didn't invite him to my wedding, even though he was one of my best friends. Because I said, Well, he's not going to be able to get around, that's just depressing. Like, oh my gosh, I chose a venue that he can't get around, I didn't invite him. My number one pet peeve is when somebody does not invite me somewhere because it's inaccessible.


I do not care how accessible it is, I am going to find a way to get around. And it's way easier than I expected. Once you get past the fact that, you know it's going to be hard. And people are gonna say, Well, you can't do that you can't get in here. But watch me I'll figure out a way if I have to find someone to carry me into your establishment, I will get in there. And you will remember me for the rest of your days and hopefully start finding a way to make it more accessible. Right? Yeah, no, um, before this, I was before I was in my chair. Um, after I remember after working 12 hour shifts in the ER, I was dead for I would have to group all my shifts in a row. And then for the next day or so I'm not Honestly, I'm in bed, I cannot function just because of how stressful that was on my body. And I really didn't know until I was in the chair. And until I started meeting other people and seeing just how much they were doing and realizing that you know, Oh, you mean I don't have to sit at home and I don't have to, you know, live off of a government paycheck if I don't want to and right. Yeah, it's it's definitely a battle. But it's a worthwhile battle. For sure.

Naveh Eldar  44:10  
So the last thing I want to talk about ableism because you talk about ableism a lot, you know, on Instagram, and and I know you're on Facebook, too, but I don't follow me on Facebook. So actually, as soon as we're done, I'm gonna look you up. But there was two things that I was specifically like for you to talk about that you posted recently. And one was a post where people assume or even maybe get angry when they find that people that use wheelchairs can stand some, some can't stand and walk even so why did you make that post?

Ryann Kress  44:41  
And so I had no

Unknown Speaker  44:45  

Ryann Kress  44:46  
that this was a thing until I was in my chair and I can stand I can walk a little bit in my house. I mean, I use my wheelchair mostly but I can get around with furniture. I have a very severe limp and I joke that I look like The pregnant duck. It's not a constructive way to walk. So if I'm going outside of the house at all I need my chair but inside Oh, and I found that many people with you know, incomplete spinal cord injuries and people spine with an SCP I mean they can stand in might not be, well, it might not be unassisted, but they can get out of their chair. The first few times that I got out of my chair in a public place and didn't think about how that would look to someone who had only one conception of what someone in the wheelchair is just paralyzed. I think I've had had several that yelled, Jesus saved.

Naveh Eldar  45:46  
Me, I wasn't ready for that. Yeah, no, I thought they were gonna be angry with you. And they thought you were healed. I

Ryann Kress  45:51  
was just like, I'm sorry. What?

Oh, and I'm just like, a? Yes, he does. I gotta go.

Unknown Speaker  46:00  
How do you handle that?

Ryann Kress  46:03  
And then

you get people who would come up to me, I mean, complete strangers and asked to pray for me, as if I was afflicted with something terrible. I've had people that would come up to me, and they would say I was faking that, especially. So I would, I would be shopping and use my wheelchair in the store, I come out and I load my wheelchair from back of my car, and then use my rats on top of my car as like a handhold. And walk my way around. It's just easier for me. And when they see that they're like, Oh, well, you just wanted to get better treatment in the store. Better parking, yeah, better parking, I always go, you may not be able to get past half of the displays, and have to constantly ask for people to get stuff for me off the top shelf. Yes, yes, that is why I'm in a wheelchair. It's so I it was just something that I had no idea that it was this strange display. It's not even like, it's like, it's just It's a misunderstanding.

Naveh Eldar  47:05  

Ryann Kress  47:06  
It's a misunderstanding. And it was, it's just very frustrating at first, especially when you're new in a chair, and you're still trying to kind of conceptualize what this new vision of yourself looks like. And this new version of yourself looks like for someone to come up to you and kind of invalidate this disability that you have. And, you know, there's some, something I talk about a lot. It's called internalized ableism. And that's something that, you know, you hear that enough that, you know, you're faking, you don't really need that wheelchair, even from physicians who are saying, well, you can walk so you should you know, muscle wasting is just the worst thing in the world. And you need to get out of that we need to get you out of that chair, just like the stairs changed my life. And physical therapy since I was 10. Like, I, I know, I lift weights all the time, it's not a strength issue. But because even in the medical world, you're not educated thoroughly about disabilities, unless that's your specialty. So you have this internalized, okay, maybe they're right, maybe I'm not disabled enough, maybe I don't really need this share. Maybe it's just you know, something, it's all in my head. And so that's the struggle that you deal with, that's almost more difficult, especially for me, at least I know, it's been more difficult to deal with that. Then what other people think about me and my chair,

Naveh Eldar  48:32  
right? Because you know,

Ryann Kress  48:33  
those closest to me see me walk and I know I need it.

Naveh Eldar  48:36  
Right? And you put a story up I think it was like really like this week, maybe where you went grocery shopping and nobody saw you walk right? This young man didn't see that. Because that I get you know, people are skeptical, right? They're like, Oh, she's faking? But this guy that I want to call some names. You know, you know, anyway, Okay, I'm gonna cut all this out right here. So there's this guy who came up to you. And because for those who doesn't who can't see rye rye is young, she's in her 20s she looks fit. looks healthy, has a nice smile energetic, and he just assumed you were faking needing the wheelchair. And how did you internalize that?

Ryann Kress  49:25  
Yeah, it was. So for those of you that don't know the story, I was at the store and I'm just so um, I don't use the power cards. Small aside about this every single time I go in a grocery store one of the workers ago, well, we have the power carts, they're right there. You can use those and I'm always just like, well, how are you going to bring it to my car so I can get to it? Or would you like to take my wheelchair so I can like it doesn't don't actually work if you use a wheelchair for your entire life. So I use my chair and I push a cart and I shot by myself. And I taught myself to do this. And you know, it freaks people out. Because, you know, I'd never seen anyone do that before. So I know a lot of people in my area have never seen a young woman shop from a wheelchair. And so it was a gentleman, a younger guy that was working there. And he just stopped. He's like, whoa, whoa, what? We have the power carts up front. And this, like, ya know, this is just kind of how I do it. And then he just takes a minute, and he looks me up and down. And he's just like, do you even need that wheelchair? Because you don't look like it? And I'm just so dumb. Haha. It seems this has happened. I've gotten a few people that have spoken up and said, Well, you know, he, he was just saying that because you're pretty. He was saying that. You're too pretty to be in a wheelchair. Oh, stop. I don't care if that's what he meant. It's still I'm still mad. Right?

Naveh Eldar  51:01  
And what does that mean? You're too pretty. Like,

Ryann Kress  51:03  
I get that all the time. Oh, my gosh. But ya know, I was just so taken aback from it. And so grocery shopping in a chair is not easy already. I'm trying to maneuver a cart and a wheelchair doing it one handed, you know, it takes strength. And it's hard. And there are some days that I'll go to like a new store that I don't know that well, and I can't get to anything, and no one will help me. And it's just it's a really frustrating, very, you feel very exposed and very on display, somewhere like that in a public spot where every single person is staring. I don't help that with the fact that my chairs ridiculously that decorated. But it's still it's a different kind of stare. It's more of a I it's kind of not PC, I jokingly call it the cancer kid. Look, because they're just like, Oh, poor her. Oh, wow, that's terrible. Oh, my gosh, and they're constantly trying to Can I push that for you? Because it looks awkward, and it looks out of their norm. And I don't take offense to that at all. But thank you very much. And I'll let you know if I need something off the top shelf. Right. And so in a in a place where I was already kind of out of my comfort zone and already uncomfortable and already trying to just get in and get out. And for him to say something like that. It just instantly all of that internalized ableism just gets louder, and it's just Well, maybe he's right. Maybe you don't need that. And maybe or, or the other side of that coin, that I will get some days because I do write this weird line of disability is Oh, well, maybe I am more disabled than I think maybe I can no longer live alone. Maybe I do need someone to go grocery shopping with me. Oh, this is too much of a struggle. Yeah. And so trying to figure you know, you're having these whirring voices inside your head telling you that you know who you are and who you see yourself isn't okay. Right. And that was the hardest part of that experience. And luckily, when these things do happen, because they I mean, they happen daily, if you're somebody with a physical disability, and a visible physical disability in public, something is going to happen almost every single day. Someone's going to say something to you. That may or may not be appropriate every day. And to now have this Instagram and have this following and have this outlet where I can go and I can say hey, this thing happened to me. Here's how it made me feel. What do y'all think about it? What can we take away from this? And how can we teach? And every single time I do one of those stories? That was probably the wrong last one. I literally recorded myself the right as soon as I got back in my car. And I mean, if you watch my videos, it's nothing like my other ones because you can tell how much I was shaken up. Yeah, that and how much, you know, offended me. And I think that that honesty and being that raw because I'm not graded, I have no poker face has brought me so many more people who relate to that story and then in turn, teach me you know, I meet people who have been in chairs their entire life. I've I'm friends with both of the Miss wheelchairs that you've spoken with. And Barb is one of the ones that often will come to me and be like, who do I gotta hit? Like Yes, ma'am. Come on. People who are older than me who have been in chairs longer than me that are like, you know what? Here's what you got to do. Let's talk about it. And yeah, just that has been the greatest gift.

Naveh Eldar  54:56  
Yeah, yeah. It's it's a community of So important and for everybody, right? We're just we're communal beings in, like you said in the beginning, when you had nobody to tell you what something looks like, think of it in xiety that somebody will have not not being that young, and having no idea what their life is going to be like, and professionals, people who have medical degrees or PhDs, tell you, I don't know, you know, so to have a community, they can say, hey, this was my experience, or, hey, this also happened to me. And, and this is how I dealt with it is like, so important. So you're like that for so many people. Now. I mean, you also have people like Bob, who will come and punch somebody for you. But then you have people that you're reaching out and help and so you're awesome. And, and I always and we're going to end on that wonderful note of the great work that you do. And we're going to go to always ask a few personal questions. And so the first one is you have a bunch of tattoos. So I'm wondering what was your first tattoo and how old were you when you got it?

Ryann Kress  56:05  
My very first tattoo is a Black Rose. It's a pencil sketch Black Rose on my side that I got the second I turned 18

Naveh Eldar  56:16  
so my last question is you used to be in plays you were a theater girl. You also did band and all these things. What is your Do you have a favorite Broadway play? Yes.

Unknown Speaker  56:27  

Ryann Kress  56:28  
is my favorite Broadway play.

Naveh Eldar  56:30  

Ryann Kress  56:30  
I have seen that show live more than any other show I've ever seen. And I have lyrics from it tattooed on me. Ah, I love it immensely. But okay,

Naveh Eldar  56:43  
yeah. Now, I love Broadway, like a lot, like probably more than I should. And I and I love it in New York. So whenever I go, I have to see a show that I've never seen. Right. So now I have to see it.

Ryann Kress  56:56  
Oh, it's so good. The movies very, very good. But seeing it live is

Naveh Eldar  57:01  
Oh, absolutely. You have to see it live. Yeah. And if it's so good that you have lyrics tattooed on you. That means I have to see it. So I'm going to make that happen. So look, ry. I really appreciate your time. I know you're coming off of a shift. Have you worked all day today? Right. And you just recently went back to work from your surgery? Correct? This week, so I know you're exhausted. I'm exhausted and I did not have surgery. I can only imagine. So thank you for taking the time. Find the link to Ryan's Instagram and Facebook pages in the episode description. Make sure to subscribe to this podcast, leave a review and give a star rating if you listen on Apple podcast. also share your favorite episodes with others. In the next episode, I'm excited to feature inclusive higher education programs for individuals with an intellectual or other developmental disability. My guest will be the head of a program, one of the national architects of the movement and a recent graduate from one of the universities. Thank you for supporting this podcast and I'll see you next episode.

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