The Dysunderstood Podcast

Transcript- Episode 5: Taylor Winnett

Welcome to the Dysunderstood Podcast. I'm your host, Ella Eastin.

On today's episode, we are joined by Taylor Winnett, a national team member for the United States Paralympic Swimming.  She is a Paris Paralympic hopeful and competes in the 100 butterfly, 100 backstroke, and 400 freestyle. Taylor began swimming at age 4, and after acquiring a spinal injury and the diagnosis of Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome, she began paraswimming in 2019.

She is currently the American record holder in the S 10 women's 50 meter backstroke. She is a proud middle child with two sisters and a wife to Jarek Wynette. In her free time, she enjoys studying the Bible, spending time in nature, watching movies, playing games, and babysitting.  She has so much to offer us in terms of experience and wisdom, and I am excited for you to hear my conversation with Taylor.

Thank you so much, Taylor, for joining me today. I have been looking forward to our conversation, um, from one swimmer to another. It's always Fun to reconnect to people in the swimming world and I am grateful that you're willing to spend time with us this morning.  Yeah. It was amazing just to be connected with you and um, you know, just, I always hope whenever I share my story that it can help other people who have been through similar struggles as me.

Yeah. Well, I'm sure all the wisdom that you're about to impart on us will definitely Um, touch some of the listeners, whether they're, you know, living with a similar condition or, um, managing something challenging in life. I think whether you have dysautonomia or not, this is, um, a space that is empowering in a lot of ways and allows people to, to think about how they are not alone going through whatever they are going through.

Um, But I would love for you to introduce yourself to the audience, what brought you to this greater, um, community, not just the Dysunderstood community, but the broader, um, chronic illness and disability community.  Yeah, so  it all started the day I was born. No, I'm kidding.  Growing up, I was a swimmer. I started swimming when I was four, and I just kept getting injured.

And it drove me nuts because I, it was under the assumption that I wasn't obeying doctor's orders. I was not being, you know, Vigilant with my physical therapy programs and so my doctors and my physical therapists were kind of just like  Taylor Are you doing your exercises you keep getting injured and I was like, yeah, you know Like I'll admit I was a little lazy as a teenager and middle schooler But um, I wasn't like going out of my way being like this daredevil But I just kept getting injured and it kind of all  came crashing down.

When I was 17, I had a series of accidents. I actually fractured my L5 and my spine, and I also herniated two discs. And after that kind of life altering injury, I spent about a year on my parents couch. I, um, I decommitted from swimming in college. So I quit my high school swim team. I dropped out of high school and had to do online school.

And I just really was.  I was very lost and very, very depressed and, um, I noticed after trying to kind of get back, you know, let's just try to go to the mall or I'll drive to the dog park and just sit there. I was having a lot of issues with fatigue and dizziness and it was just weird. Like I, on my worst day, I slept like 16 hours and I remember my mom was like,  I was kind of worried you, like, died, but, like, I saw you were sleeping, so I didn't want to wake you up, but, um,  I just was really, but my life as an athlete for, like, 13 years just changed, and I just couldn't really do anything.

All I did was rehab for my back and kind of just lay on the couch and sleep.  And as a part of that process, I, um, I gained 35 pounds about, and, um, I didn't do any physical activity.  And when I went to college, I just  could not make it to class often. So I actually had services through Disability Support Services at my college where I was allowed to skip class to sleep.

I had other accommodations for my physical disability. But, um,  I was just like, what is happening to me? And a part of my process after I broke my back is they looked through my medical records and they were like, okay, um, something's up. So I went to Johns Hopkins and saw a geneticist, and through that process I was diagnosed with Hypermobile Ehlers Danlos Syndrome.

And I remember bringing up with her my fatigue, like the fatigue, the dizziness, like my legs were turning purple and red when I would stand, like it was just weird. I love to take baths, I couldn't really do it anymore because I would just feel like something's wrong.  And so they recommended I go see a cardiologist.

And through that process, I was diagnosed with POTS, which I know a lot of you are probably very, um, familiar with.  And, but through that process, I remember just thinking, you know, like,  Is this anxiety? Is this depression? Um, Because I did have some psychological conditions after breaking my back. just with my self image and all that stuff  and then also living in Maryland, a part of me, I did some of my own research and I reached out to people through Instagram in the chronic illness community  and I had been bitten by a tick a year earlier.

We found a tick on my head so we couldn't tell, you know, the rash with Lyme disease. So that was another avenue too. I was like, maybe I have Lyme disease. And, um, through the process, I was diagnosed with POTS. And I also think some of my, um,  fatigue was caused from my depression. Um, because throughout the years, as my mental health has gotten better, and then my kind of treatment protocol for POTS, that has gotten better.

Um, I still get dizziness and stuff, especially, I love to take baths, but I gotta be really careful. Um, but my fatigue has gotten a lot better. And then over the last four years, I've gotten into paraswimming, which is swimming for people with disabilities.  And overall, my quality of life has gotten a lot better.

So, um, That's kind of just like a big, quick umbrella synopsis, but, um, yeah, so since I'm 24 now, so since I was 17, um, I broke my back, I was diagnosed with POTS, hypermobile Ehlers Danlos, um, I was tested for vascular EDS because I perforated it. My duodenum, and thankfully that was negative, but um, it was just weird, like I remember  when I got my diagnosis for POTS and EDS, I um, I went in my car, and I just like bawled my eyes out because I was scared, like, I have a disease, you know, that's not gonna go away, like this is, I was born with this basically with the EDS,  but also like I felt such a sense of like release, like so many aspects of my life, makes sense now, like why I got injured all the time, why, you know, my legs do this weird thing.

And it just like all came together. And ever since then, it's kind of just had me have such an appreciation for the medical system we have, even though it does have many flaws. But like, I feel lucky, especially as a young woman to have had people listen to me. And, you know,  I don't know, validates the right word, but kind of like a firm, like, hey, you know, like, we're gonna help you, basically.

So it was just a lot over, you know, my young adult years, but yeah, it's all good now. Wow. That is a lot to unpack. Um, I would love to hear about  I mean, I have so many questions. Um, but first, I would love to hear how you got reintroduced to the sport of swimming after you had this, like, life changing injury in addition to these, um, diagnoses that, you know, often hinder people for quite a while from Thank you.

Um, either exploring new things or, um, you know, allowing them to push themselves. So I would, you know, be interested in hearing, um, how you ended up in the position you are now, which is, um, a para swimmer.  Yeah. So a little over a year after I broke my back, I started college at Loyola University, Maryland.

And the swim coach there, Brian, honestly, he I cannot praise him enough. I'd never formally swam under him, but this man has helped me and advocated for me in so many ways. And like,  just people like that out in the world really warm my heart, because like, I was just a random recruit who he accepted into the program, and then I became disabled, but he still cared about me.

You know, he didn't have to do the things he did, but he did. So When I went to Loyola, I did not really go to the gym because it was really triggering for me. Like, I swam for 13 years, and after my back, my pain management doctor, I asked him, like, Okay, like, what's the timeline for me to get better? When's my pain gonna stop?

When can I swim? And he kind of just looked at me, and he's like, um, you're gonna have issues, like, the rest of your life. Like, you're gonna be in pain the rest of your life.  And I don't think you're going to be able to swim competitively again. And so I accepted that and I kind of just gave up on being an athlete.

Cause I was like, well, Dr. Lee said I can't do it. And so when I went to Loyola,  I was still doing rehab for my back at Hopkins. And my rehabilitationist, I come in one day and she's like,  You talk about swimming a lot. Why don't you do it? And I was like, Well, um, you know, my, my pain management doctor said with my pain and my issues, I can't do it anymore.

And she's like, um, you can swim, like, it's okay. Like, I was really scared because  almost everything made my pain worse, like walking, if I didn't sleep the right way. So there was an aspect where I was afraid I was, like, hurting myself. Because, like, I'm used to pain is damage. So, like, when I sublux or have an injury with my Ehlers Danlos.

Usually, if I keep swimming through that pain, I'm making it worse, and I'm damaging it. So, I kind of had to rewire my brain with chronic pain, you know, like, it's gonna be there, but it doesn't mean I'm, like, hurting myself. And that was really weird for me to, like, kind of piece together. Because she tried to explain to me, she's like, it's gonna hurt in the moment, but I think overall you're gonna feel a lot better.

Like, just emotionally, physically.  So, I remember  I go in the pool and I think the first day I was just gonna try to swim like half a mile or something and you know right now I swam almost a 10k yesterday so like my life is very different now and I started going there I had crutches um and I wouldn't kick or do flip turns I would just do my arms  and coach Brian came over one day and he's like hey um you know I remember you telling me you have a spinal fracture and I've seen you swim You  You know, like, I can tell you're disabled, basically, like, in the nicest way possible.

Um, have you thought of Paralympic swimming? Like, that could be an option for you. And I was like, what are you talking about? You know, and I had no idea it existed. Like, I remember I watched, like,  the Olympics growing up. I remember I watched Beijing with Michael Phelps. I was at a swim meet. We were in a hotel watching it.

I didn't know that Paralympics existed until I became disabled. So  That kind of like shook my world in such a great way and Loyola also has turned out some very very  Accomplished Paralympians. So Brian knows a lot about para swimming.  And so I began looking into that Avenue And a part of Paralympic swimming is you have to get classified.

And what that means is you have to have a disability that the IPC considers to be like a valid disability. And I mean that respectfully. Um, there are certain disabilities they don't consider to be eligible, which I disagree with. But as a current swimmer, you know, like, I have to be accepting of the current parameters they have, but that doesn't mean we can't make it better.

Um, so for example, a couple diseases they don't consider to be disabling are Ehlers Danlos Syndrome, um, conditions that cause primarily just low muscle tone. And cystic fibrosis, which I personally think cystic fibrosis 100 percent affects your ability to be an athlete because your lung capacity, but they do not consider any kind of disease affecting lung capacity to be a condition, um, which is a different story.

So.  I went through to get class the first time, and part of it during classification for a disability like mine, where I have, um, muscle weakness and also my range of motion and my spine's not what it used to be, is they do some table tests for you.  And my first time I got class, my dad and I drove eight hours from Georgia, or from Maryland to Georgia.

And the first couple years after my back, like, I really struggled sitting more than half an hour, which, with my POTS, was a unique struggle, and then with my leg weakness, because I couldn't stand for long periods of time either. So, like, laying down was kind of, like, my best bet in life. But, um, we get there, and I, like, can barely walk.

I'm in so much pain from just sitting all day. And so the classifiers decided, like, hey, You know, you're pretty soon after your injury, they usually want you more than two years out, and your pain is still not very well managed. So we want you to do more rehab, um, just to make sure you're physically not going to improve a lot.

So that's kind of an issue in paraswimming. So you get people with fresh injuries, especially like brain injuries and spinal injuries, they classify them and then they get better and they class up. So they want to try to make sure you're like fair where you're at. Um,  I was disappointed and upset, but you know, I went home, I did more rehab, um, some more injections in my back for pain management.

And then they sent my file just to be approved that they could differentiate my leg issues from the spinal injury in the LR Stanley's. Cause that's another issue. I've talked to a lot of athletes.  Who have only Ehlers Danlos and they've messaged me on Instagram, like I want to do Paralympic sport, but you know, they don't consider me to be disabled.

What do I do? And with the current rules, there's really nothing you can do. And  I personally think it should be taken on a case by case basis. Everybody, I know some people with Ehlers Danlos you never would have known. And I know other people with EDS who can't walk and use wheelchairs. So that's my little soapbox on that, but, um, I went and got nationally classed and I was a 10.

So for para swimming with disabilities, you're on kind of, you're given a number between 1 and 10. So 10 is the least disabled and I swim a lot with girls who have, you know, they're, they were born missing a hand or they have a leg amputation below the knee. Um, we have some girls with cerebral palsy,  um, brain injuries, and then I've seen a couple spinal injuries who can walk like me, um, who are deaf.

But, um,  yeah, so that happened, and at first, I was defeated in a way because  S9s and S10s, in my opinion, are some of the most, um, competitive classes. Like, we have the most women. Like, there's a ton of women who are 9s and 10s. And I knew the times I needed to do to be on the national team, and I was like, bro, there's no way this is gonna happen.

So I was kind of like, I'm gonna swim for my mental health and for my physical health.  And then as time went on, I started getting more, I'm just very competitive. In certain ways, I started to get more into it, pushing myself harder, and, um,  I was offered an international classification slot  last year, and I got that, and then from there, I've kind of just really put my energy into swimming, and I actually graduated from college and quit my job in order to swim, which  In the moment, it was crazy.

Like, I cried about it a lot. Because I needed to go to this swim meet to get classified.  And my job would not give me the time off to do it. So I remember talking to my husband. I'm like, Am I gonna quit my job to go get classified and swim?  And  I did. But it worked out like since then I've been to Mexico.

I've been to Italy. Um, I might be going to Mexico again in October Um, I did not make the world's team this year. So I'm going to Pan Ams in Chile in November so swimming has brought me so many  Opportunities but it also has helped me kind of like accept that I'm disabled because the first year after my back Or I would say the first three years, um,  I was very embarrassed.

Like, I wore knee high compression socks and braces. I had a cane or I had crutches. And, you know, I didn't really know a lot of people like that who were like me. And in college, um, I made mistakes and I, um, I, I do consider myself to have been bullied as well, but, um, it was just a really weird, hard time for me, um, but it's taught me, like, a lot of life lessons, and I love to talk about it with other people because, like,  a side effect of my acquiring my disabilities is that I wanted to take my own life, and I feel like if people talk more about, like, yeah, I go to therapy and something, you know, That might be TMI.

I talk a lot. With my spinal injury, I have accidents, you know, and like, if we normalize, like, I faint sometimes, I pee myself sometimes, you know, I see a therapist sometimes. Like, I think it would really help people, like, instead of just, like, keeping certain aspects of disability, like, so hush hush. Because, like, there are a lot of people like us out there.

The issue is we live in a society where we have to mask and hide it because people either judge us or it's not accessible. And it's just really hard to ask for help. Like, it took me quite a while to be able to, like, ask people, like, Could you go grab this for me? You know, and I've kind of become more confident and accepting of that and it's helped me a lot too.

Wow.  Your story is amazing, and I truly appreciate you opening up about, you know, the effect that your circumstances had on your mental health. I think that,  you know, we as a society are plagued with mental health concerns, um,  but, you know, this is an area that I don't think is  Um, as often as it should be, as you mentioned, um, you know, having something completely change your ability to, um, live your life as you know, it is incredibly disrupting.

Um,  if you don't mind sharing what.  What were the steps that you took or who were the people that helped you take steps to move forward when you were struggling the most? I think support is something that I love to emphasize here in this community because you can't

Um, so I'd be interested to hear about your support system and, and who was it that kind of lifted you up when you needed it?  Yeah, so I'll be honest. Um, a lot of my memory from like my senior year of high school to I would say like my sophomore year of college. It's pretty clouded. Um, I think part of it was just the trauma of what happened to me and then with the depression and just my health issues in general.

But, um, something that really strengthened as a part of becoming disabled for me was my faith. Um, so I'm a Christian. And kind of just like  connecting with God really helps me in a lot of ways because it helps me realize, you know, I  do not need to be validated by society, you know, like me, I do not need to seek approval from other people.

And  as long as I'm, you know, being a good Christian and a godly woman, that's really what matters. And sometimes society's values doesn't always align with that.  And, um,  I feel like  the internet, I don't know how to say this and not sound like really young, but like aspects of the internet are awesome and others aren't.

Um, but when I first got my diagnoses, I, you know, had to spend a lot of time in bed and I would kind of just go through Instagram. And I met some paraswimmers before I was even classified. I was in a group chat and I talked to these other young women my age. And, um,  kind of just browsing hashtags online and just talking to other people like, Hey, you know, I have these experiences, how about you?

Um, but for me personally, there is definitely a downside to the internet. So for me, um, talking about my conditions too much kind of affects me negatively. And I kind of fell into that pit when I first broke my back, you know, like I would be like  I'm in pain every day like poor me and like I don't want to make that sound bad because like I think it's part of accepting like what happened to you is like  I, in that moment, like, I needed support, I needed people's attention, personally, like, I needed to know that people cared about me because I lost so many things in my life, like, I just wanted to know, like, there were people in my corner, and I think some of it, too, was just the age it happened to me, like, I was 17, which is a really important  part of, like, becoming an adult, like, you're looking for your identity.

So, like, I think some of it, too, was just, like, behaviorally appropriate. But, like, looking back, I did do things that I'm embarrassed of and, like, I don't approve of anymore. But, um,  my family, like, honestly, I was just bouncing all over the place. But it depends on, like, the current aspect of, like, time in my life.

So, like, my family,  um, really, really struggled with accepting  Um, me identifying as disabled, and like that sounds weird to put, but, um, I had conversations with my dad like after, like a year or two after my back, I just got my Ehlers Danlos diagnosis,  and I was talking to my dad, and he was like, you know, I just don't think it's good for you to like limit yourself.

And I don't know if I agree that you have Ehlers Danlos,  and, cause he, you know, it's genetic, and I, I haven't had anyone in my family formally diagnosed with it, but my mom and my grandma show symptoms of it. But it affects people so differently, it's hard to get diagnosed. And honestly, my grandma, no offense, is kind of older.

I really want to benefit her to seek a diagnosis. I don't think she's really interested in it. Um, but mine is more severe than theirs. So, like, having that for surgeons to know when I have surgery, like, I need to be, like, repaired a certain way is really important.  But my dad, like, really struggled with it.

And I kind of sat him down one day, and I was like, Dad, like,  and I'm like, bawling my eyes out. I'm like, I am disabled. Um,  get over it. Like nicely, you know, like as nicely as I can put it. And I was like, it's not your fault. Like my dad wasn't the best at, um, he died. So that's why I'm like talking in past tense, but, um, he was not the best at like  processing his emotions.

So like I told him, like, it's okay. Like If you're scared or like if you're sad like I am too and like don't feel like this is your fault Like I had accidents. I was born like this like you guys didn't know I saw many doctors growing up One of them was kind of like, hmm, like, your shoulders are a little weird, this is, but he didn't do anything about it.

But, like, the doctors didn't even know, so I told him, like, if you're feeling some kind of guilt, like, don't, you know, like, it just happened to me. And  after that, he actually was the person who drove with me to Georgia to get classified. So, like, he became more accepting of it, he became more educated on it.

And then he died almost three years ago. So that was kind of before my international, um, career started.  And it is difficult for me because he, um, he died from alcoholism and that has also impacted how I  treat my conditions because I know addiction runs in my family.  And I know that, personally, how opioids make me feel, like I am at risk of becoming addicted to them, so I'm very, very careful whenever I have surgery.

Um, how that is treated. But, um, nowadays, I feel like my biggest support system is 100 percent my husband. Um, he does not, he's not the most medically, like, informed person. But, um, he tries his best. And, you know, he, um,  especially when it's the summer, whenever we go out somewhere, I always remind him, like, if something happens to me, like, remember, I have POTS, I have Ehlers Danlos.

Um, you know, this is what you should do if I faint, this is what you should do if I get hurt. And I've been, like, really healthy the last year. I haven't been in the ER for, like, EDS related issues in about a year, which is awesome.  Um,  so he hasn't really experienced that a lot, and we've had a lot of conversations about it.

Like,  he was not there when I was at my sickest, so I think it's hard for him sometimes. To understand, like, how bad it really was for me. Cause he sees me now, and his family sees me now. Like, I  win sometimes four hours a day. And, you know, I'm very active. And they didn't see me when I was, like,  when I even get off the couch.

You know, and I think it's hard for them to understand sometimes. Because  From an able bodied person, like, this doesn't really sound offensive, but, like, I've had people tell me before, like,  Oh, I didn't even realize you're disabled, or, like, I don't really, you're not disabled like those people, you know, like, you're not that disabled.

Which, like, disability is a huge spectrum.  But, um, sometimes when people tell me that, I feel like they kind of minimize what happened to me. Because, like, would they have treated me different when I was, like, one of those quote unquote disabled people who, like, I needed a lot of help and I couldn't do a lot of things.

And, you know, I think  our ability to do things as people  shouldn't really matter. Like, are you a good person on the inside? Which sounds super cheesy, but, like,  I've heard people say before, like, Oh, well, they, like, you know, that person needs an aid. Is it really worth, like, paying taxes for their health insurance?

And I'm like, that is a terrible thing to say! Like, I, I do not like how certain aspects of society, like, assigns value to your physical abilities. Because people forget, like, I don't want to be anxious or morbid, but you could be Cooking mac and cheese, have a brain aneurysm, that brain aneurysm have a stroke, and you could be mildly to severely disabled, like you never know.

So when these people I hear talk about like, you know, health insurance or whatever, like Some people just don't want to work because they're lazy. It's like Y'all just don't get it, and I, I do have some sympathy for them, cause like, you know, growing up, I was told, you know, the American way, you work hard, if you're a hard worker, you know, you won't be poor, or if you're a hard worker, like, this'll happen, and it's, it just happens.

Society's not like that. Like, I know people who work so hard, and you know, they do have a lower socioeconomic status, and that doesn't mean they're like a failure as a human being, it's just the way the world works sometimes. And that was just like, a completely random tangent. But like, but needed to be said, yeah, it's like, I'm sorry, I like, I don't have I've never been diagnosed with ADHD, but I like zoom around a lot.

So just the way my brain works. But I think that when we have the opportunity to speak about these things, knowing that there is an audience that's interested, or at aka me here. Um,  You know, we want to be able to speak freely and feel like  it's nice to feel like we're being heard and you're like preaching to the choir.

So, um, but thank you for opening up about all of that. I'm really sorry to hear about your dad. I'm sure that. He is so incredibly proud of you. I can tell just from, you know, you sharing your experiences that the last, um, you know, seven to eight years have, like, truly shaped you into a different person and, um, the things you're doing, you know, every day now are amazing  Um, you know, just recently you were breaking American records by before we were recording this.

So congratulations. Um,  and you said so many things that I, you know, we could  start a tangent off of all of them. But something that really stuck with me was the conversation that you had with your pain management doctor and that he  kind of  placed limitations on what you felt like was possible. And  I wonder what your perspective is on the balance between being realistic as a doctor and also giving people room for hope in recovery and being able to return to some of the things that they love doing.

And where do you feel like it's best to strike that balance?  Yeah,  so I don't mind saying his name because it's like super common and like it's just easier for me and it's shorter. So, his name was Dr. Lee. So, like, I don't really fault him that much. Um,  the diagnoses I had at 17 were, like, not normal. Like, I saw a surgeon last year to talk about having kids, and he's like, you're 23, we just don't see these issues in 23 year olds.

So, like, honestly, like, You're at risk, but I can't tell you with confidence, you know, don't do it or do it because like basically be a guinea pig, but um So I don't really fault him like you don't really usually see Teenagers with spinal fractures and herniated discs. I also have degenerative disc disease and  I have a cyst I have like all this crap going on in my back.

Um So I think for him, you know, she  I just don't think she knew You know, when I think back, like, I don't know how many doctors out there really know that, like, parasports exist, you know? And, like, I've thought about, like, going in and asking them, like, do you know what this is? But, um, usually, I will be honest, I do have medical anxiety, so, like, going into appointments, like, I try my best just, like, not to show too much emotion, to be very factual, because as a woman, um, and I don't want this to come off the wrong way, but, like, I have seen it.

People be blown off from doctors because of their gender. Um, really quick tangent, especially with endometriosis. A lot of women, like, it is not normal to have periods so painful, like, you can't walk the first couple days. And society has kind of just normalized it.  And, um, it just makes me sad, like, there's not enough research, there's not enough concern for conditions that impact  women, majorly.

But, um, so yeah, with Dr. Lee, I honestly just think she wasn't very educated on the Paralympic movement, and granted, this was in 2016, and I kind of feel like  the Paralympics The modern age of it really started around Rio, so around 2016. That's when we started getting sponsors and visibility and like, it really wasn't that well known, in my opinion, back then.

Um,  but I think it's important for physicians, you know, you have to be realistic. So, like,  let's say, you know, I had,  I don't know, a stroke, and it was pretty severe. You know, I do not think it would be wise for a doctor to be like, well, if you try really hard, you'll be able to do an Ironman someday. Like, that's not really realistic.

But I think it's also important once you give. your patient, like, a life altering diagnosis or a lifelong disability diagnosis, like, you need to have resources ready to help support them. And they did offer me that. So, after my back, it was advised that I do some therapy, um, just to help with kind of my pain management, but also just with my other behavioral issues I had.

Because, you know, my parents got divorced and then they got back together, and, like, I just had a lot of stressors in my life.  And at first I was kind of like, almost insulted by it. I was like, I'm allowed to be upset, you know, like, I'm in pain every day. Um, why are you saying I need to see a therapist?

Like,  there's nothing wrong with me mentally. And you know, like, looking back, like, 100%, I had a lot of stuff wrong mentally. Cause like, back then, I thought mental illness is, you know, like, You just need to try harder or like you need to be thankful And so I saw if you had a mental illness like you do there was assault in your character Which like a thousand percent is not true in any way like do not listen to me  Um, but no, I just thought you know, like I'm just not being grateful or I'm a baby like I need to get over myself  But you know, I started therapy again a month or two ago because my husband and I want to adopt and I kind of wanted to process things and just get stronger in my marriage to be a good mom, basically.

Um, I think therapy is great, um, in a certain degree. I think certain therapists, um, certain  treatment styles, I'm not a big fan of. But, um, overall, like, I think growing up, you know, kids get physical. I think kids should get physicals for therapy because I kind of fell through the cracks. I had behavioral issues as a kid.

Um, I've had teachers ask me, Do you have ADHD? Like, what's wrong with you? And like,  nobody ever thought to have me evaluated. I don't know, whatever. But, um, so yeah. And I think a great avenue for it For doctors is sports because like I'm super biased. I've been an athlete my whole life, but you know, if you look at America and a lot of the chronic issues we have, um, if we were a, which I still think we're a huge sports culture compared to other countries, but a lot of the chronic issues we have.

Could be improved upon with sport  and you know, you can do a sport You don't have to be a Paralympian like devote your life to it But I just think you know, like oh we have a patient who um  got a car wreck amputation Maybe we should talk to them about parasports, you know, wheelchair basketball, sled hockey, um, paraswimming.

And I think that, um, sports can help people physically and emotionally, which it's done a lot for me. But, um, so yeah, now whenever I'm on like Instagram or Reddit and I see, I'm on a lot of parenting subreddits, just like, I want to be a mom soon. And, um, even just the other day on Wednesday, I heard a dad talking about his daughter who had bone cancer.

And he was like, I'm a single dad. Um, she just had her leg salvage surgery and she's feeling a lot of emotions about her self image because she, she lost her hair. She has a lot of scars. Do you dads have advice for me? And I commented, I'm like, I'm not a dad, but I lurk here. And I said, this is not what you're asking for.

And, you know, I mean this respectfully because some people it might be offensive to go out with this. But I was like,  I acquired a disability. And I started doing paraswimming. I've done wheelchair basketball and sled hockey. So, you know, if your daughter wants to interact with other girls her age, other kids who have had cancer, I have a lot of teammates who have had some kind of cancer and had their lady amputated or whatever, um, you could look into that.

And he responded, you know, like, I think that's a great idea. She loves sports. And, you know, wheelchair basketball could be a safe option for someone going through chemo with support. Um, It just depends on what her, like, salvage surgery was because you have to be able to sit in a chair and bend your knee.

But there's still other options, like archery or whatever. But, um,  yeah, so, like, overall, in a synopsis, I think it's great if doctors are realistic.  But  if you have bad news, you should probably come in with some good ones, too, which can be difficult. And I, I'm not a doctor. I don't understand the stresses of the job, honestly.

But, um, I feel like if Dr. Lee went in and was like, Your back's messed up. Forever.  But, I know you like sports. Here are some options for you. Like, I feel like that would have pivoted my life in a much positive More positive way in the year after my injury if they did that. Yeah. Even, you know, if you weren't ready to hear it in that moment, if you thought, you know, that wasn't an option for me, I think you'd maybe think back, you know, give it a little bit of time and, and think, oh yeah, this is something that he mentioned.

You randomly Google it one day and like maybe come upon the idea again. Um, I think that's a great like, takeaway, um, you know, providing. The support and not just the news, um, I think is really important to consider, um, and, you know, if, if physicians are in a particular space where they're seeing certain kinds of patients, I think that it is,  Definitely part of the job description to like, be able to be a healer in multiple ways and not just, you know, under the knife or under the microscope.

It's like, let's try to, you know, take care of our patients in the whole sense of the word. Um, but, you know, as you're speaking, I'm just realizing how much perspective you've gained. And also, I truly appreciate how open and vulnerable you are with the  How  your perspective has changed and being willing to admit that, you know, at one point I thought this way and my experiences have now taught me otherwise.

And I think that Oftentimes people are,  are scared to talk about their mistakes or openly make mistakes. But I think that in order to make the space for people to feel comfortable failing in this, in the area of like,  disability advocacy and learning how to use the right language and, and all of these things, it's important for us that are a part of this community to also acknowledge that like, we have not always been perfect in this way either.

And still are not perfect and are always learning. I think that's really important. So I am truly grateful for, for you opening up about that. Um, and I, I want to acknowledge that, you know, everything that  You have shared, I can imagine people are either inspired by or relate to. Um, so I, you know, I've just been really enjoying listening to you.

Um, I've learned so much.  Thank you.  So tell me a little bit about your future goals, aspirations, hopes. I know, you know, you're looking to, um, take on. motherhood, which is really exciting. Um, and in your personal life and in your career, what are kind of the next things you're looking forward to?  Yeah, so I, um, have learned so much in the last two years.

Um, so when I first acquired my disability, like, I had no idea that it could impact my ability to safely have children.  Um, and kind of in the last two years, I've just done a lot of, like, looking into it. And like I said, I am  I have an anomaly with the issues I have, um, just with my age. There's not a lot of research out there on women who have the kind of spinal cyst I have, like, before they give birth.

Or, you know, the kind of fracture I have in, like, herniated discs and stuff. And so I saw two doctors, two surgeons last year, and then a maternal fetal medicine lady. And, um, the first surgeon walked in, you know, she opened the door and she was like,  Have you and your husband considered adoption? And I was like, okay, I know where this lady's going.

And, um, she was more concerned about the Ehlers Danlos I have. And, you know, I appreciate her opinion, but it's very personal. She was concerned, you know, How ethical is it to have children if you have a genetic disease? Which, I appreciate her input on it, but that's also a personal decision, you know, it's a moral decision.

Um, but she also came and gave me, like, medically, this is what could happen to you if you were pregnant.  And so,  I remember, we went to the post office after me and my husband, and I'm, like, bawling, and I'm, like, okay, like, I'm gonna get sterilized. You know, I've decided and then I went home and I was like, I don't want to get sterilized So we waited and then a couple months later.

I saw the MFM  She was like, um, I have people come in who are green like gray or red She's like if you had vascular Ehlers Danlos I would tell you if you got pregnant you need to have an abortion because it's very risky with your heart Um, but after I  perforated my duodenum, I tested negative for it. So she told me with my back issues, I'm kind of in a gray area.

Um, she would not tell me like, go for it. I think it's a great idea. She's like, we don't really know, um, if the weight of pregnancy, what it would do to your lower back. Um, I'm at risk of complications, birth and C section wise with the EDS. So like, there's just a lot of factors. And then the second surgeon I saw last year was kind of like the dude who was like, Well, you're young.

Um, you have risks all the time. So if you want to do it, go for it. But like, it's probably going to make your issues worse. But I can't tell you for sure. So like, we kind of just got like, my husband was really frustrated. He's like, these doctors, like, are afraid to tell us like a concrete thing. Like, we're not going to sue them.

Like, I just want to know. And I'm like, Well, Jay, like, it's, it's not their fault, like,  I don't know, I know, I think, like,  I don't think I know anyone with Ehlers Danlos who also broke their back, and, like, it's  complicated, because I have multiple things. So, I've started, like, looking into adoption, which, like, I've always wanted to adopt anyway, my first date, me and my husband, actually, I told him I want to adopt, um, I want four kids, I want a two biological and two adopted,  and, um, I've learned a lot and I've talked to my husband about, you know, would you want to seek out specifically a child with disabilities?

Cause I feel very secure in raising like a confident loved child who's disabled. And we've talked about interracial adoption, international adoption.  And, um, you know, listening to a deed has helped me a lot too. So if anyone listening to this is interested in adoption, I think that's great. Um, but I also think it's really important that.

We need to look at society and how we view adoption and how, oh,  it's not, oh, the majority of the time, which was really shocking for me to learn that, um, a lot of adoption, you know, comes from poverty. And if someone loves their baby and wants their baby.  They should get to keep their baby. Like, I think just because you can't afford it, we need to have people to help or things in place to help people keep their babies.

Um, but that's a whole different story. But, um, kind of learning about the ethics of adoption was really, like, shocking to me. Just, like, in general, I've, I've heard, I tell a lot of people, like, we plan to adopt next year, but we might be moving overseas, so it might be three years. And I've had a lot of people be like, Wow, like, that's amazing.

Like, you're a great person and like, I'm not a good person because I want to adopt, you know, like, there are children who need homes and I should not be praised for that. Um,  as a society, we should step up and help our kids in the foster care system who need to be adopted. Like, I'm not a saint because I want to adopt, um, which I think is hard for people to accept.

But like, when you have that narrative that like,  oh, you're such a good person for saving the babies, like, That makes the babies feel like, wow, am I, like, a burden, like, why are these people, like, we don't praise people, like, you're a great person because you reproduced and had a baby. So, like, that was really, like, mind blowing for me to learn, you know, like, how can we make adoptees  feel better about, kind of, their self image and stuff, and kind of changing society where, like, you know, just the way we talk about adoption, I think, is really important.

Which was like a huge random stand in again. Um,  but regarding my swimming, I have to get classified again next year. Which is super stressful because they usually don't like to classify, um, national team members the same year as games. Because the issue is, if you move up a class or down a class, it can cause a lot of like, For lack of better words, drama.

So like, say, I was the best, one of the best nines in the world and they move me to an eight. Like, you're  impacting other people making the theme now. Cause we can only take three people per event. So, right now, we have five nines on the national team. And if we have a girl get classed next year who becomes a nine, who's a little bit faster, that girl just lost her slot.

So, it's stressful. But, um, I have to get reclassed next year, but kind of where I was classed on the bench in the water, I'm pretty confident I'm just gonna stay a ten. Um, my cysts, my, like, leg issues haven't really progressed significantly enough for me to move down a class.  But, um, kind of next year, at the end of this year, I have Pan Ams.

Um, five is my favorite number, so I want to get five medals, which, like, is pretty, um, ambitious. But, the way the United States and Canada works is if you made the World's team, you do not go to Pan Ams. So, I narrowly miss the World's team, so, like, I'm kind of on Um, respectfully, like the higher end of athletes going to Pan Ams.

So my, um,  statistical probability of meddling is a lot higher compared to, um, some of the, like, emerging national team athletes. So I wanted to meddle, I want to get gold and 100 back. And then it depends on my teammate, my one teammate pulled out of Worlds who's also a 10 and she's going. Phenomenal Butterflyer.

So I want her, me and her to get, uh, gold and silver. And then we have a newer girl who just joined the team, and I'd love for her to get bronze, like, I'm gonna sweep the podium in 100 Fly.  And then, um,  I think I have a good shot in 2 IM, and 50 and 100 Free are gonna kinda be, uh, Mix up like I think I'm slated to be fourth right now by like a couple tenths of a second So it'll be a good race  And then um, I'd love to do a relay like I have not done a relay at an international meet since my bat which like  this is dumb, but I can't do relay starts anymore and like I used to love doing them.

Like my reaction time was so good. So like, um, but, um, the things we give up, right? Yeah. Yeah.  And then, you know, next year's games and I kind of know where I'm at right now, internationally. Um, I personally do not think I have medal, um, opportunities, but that doesn't mean I can't get faster. But like, if we had games right now, um, my goal, I just want to final in a couple events, which I think will be really fun.

But, um, kind of the way, like, my body has been handling training, I kind of think that, um, after Paris,  I might, like, step down a year or two. Um, I'm not sure if LA is kind of in my future. Um, training in general is pretty hard on my body. And I kind of explain to other people, like, people like me with spinal injuries or, say, cerebral palsy or brain injuries, the way we train is different than, like, an amputee.

So, like, if the pool's closed, I can't just go run. But I know some people who are amputees who could run. Um, so, like, I tried to do the elliptical last year, and kind of with the slippage I have in my spine, it caused really bad pain, so I had to stop. And I physically cannot run just with my coordination.

So, like, the elliptical, like, it guides your legs. So, like, really the only cardio I have is the pool and then, like, the arm bike. Um, I've considered, like, stationary cycling, but I'm kind of worried that would stress my back similar to the elliptical, but I think maybe not as much.  But, um, I'm kind of taking it a year at a time, so we'll see what happens after Paris.

Um,  maybe I'll bring my kids to swim meets one day, I don't know. But I think, like, in the grand scheme of things, like, I'm gonna swim.  Hopefully my whole life  in some capacity. Um, you know, I think swimming, I'm very biased. I think it's the best sport. I think it's a life skill. Um, and I think it is one of the only sports where.

97 percent of the population could do it. So, like, if you're on a ventilator, or, um, you know, have a trach, I'm not sure how safe it is to swim because of infection risk, but, um, I know people who swim who have no eyes, um, no legs, you know,  they had a stroke, and most of their body isn't functional. And it's fascinating because, you know, swimming It's basically for almost everyone and I love that about the sport.

I think it's really, it's beautiful.  It is. It's like, it's a really empowering thing too, which, you know, it's one thing to reap the physical benefits, but I think  it's really hard to say that you get out of the pool not feeling better than when you got in it. And um.  I think so much more of the population could benefit from swimming and everything positive that it has to offer.

So,  but thank you so much for the time you spent with me today. I have learned so much about you personally, but also, um,  feel really inspired and Um, have taken so much away from our conversation, and I'm sure the listeners will too, and I look forward to seeing you compete, um, watching and keeping up, um, on results and how things are going, and I am so grateful for your support.

All of the advocacy work that you're doing, um, I'm sure in your personal life, but also at a larger scale for, you know, the Paralympics and also for this community. So I'm so grateful and I know that you have a bunch of cheerleaders, um, now cheering for you. Um, and thanks for being such a, a great example of, um, learning and resilience and Strength and encouragement.

So thank you. I would not be where I am today, kind of without all those people I said in my quarter, like my family, my husband, my faith. And,  you know, I, I hope I long for the day where, like, We, as a society, are kind of just, like,  more accepting and encouraging for people with disabilities. Um, and I definitely notice, like, as I'm getting older, that society has shifted.

Like, in general, like, I feel like now, I do not get asked nearly as much in public, like, What's wrong with you? Like when I first broke my back all these people like what's on your legs? Why are you wearing braces? So I feel like in general like society's kind of stopped seeing us as kind of like a curiosity and more just like, “ There is a redhead at Starbucks,” you know, so that's pretty cool.

I love it.  Well, have a great rest of your day. Have a good training session. Um, I'm sure we will, um, talk again soon. And thank you again, Taylor, for, for all the time and all the wisdom you shared with us.

As always, you can find All Things Dysunderstood at DYS. Understood. com or at Dysunderstood on Instagram and TikTok. You can find me at Ella Easton on Instagram, and if you want to share your Dysunderstood story, head to Dysunderstood. com slash contact us. Have a great week, guys.