Resilience and Creativity with Kelly J Mendenhall: Navigating Invisible Disabilities and Transformative Journeys

Kelly's journey from being able-bodied to navigating the world with severe mobility challenges is nothing short of inspiring. As a dedicated author, artist, speaker, and disability advocate, she shares her powerful story of resilience in the face of adversity. Join us as Kelly opens up about the struggles and triumphs of living with an invisible disability, emphasizing the importance of comprehensive inclusion beyond basic ADA requirements. Her candid discussion sheds light on the often-overlooked experiences within the disability community and underscores the necessity of creating accessible spaces that truly cater to the needs of all individuals.

In a parallel narrative, I recount my own battle with physical limitations, chronic pain, and the transformative journey from spinal cord surgery to achieving personal fitness milestones. Through my story, we celebrate the strength found in self-belief and determination, even amidst challenging medical diagnoses. As we reflect on the healing power of creative expression, I share the origins of my art store, founded on a pay-what-you-can model, which seeks to spread love and joy by making art accessible to everyone. Together, we explore the profound connections art can foster and our collective mission to offer hope and inclusion through creative outlets.

Chapters

• 0:02 Navigating Life With Invisible Disability
• 12:11 Overcoming Disabilities Through Determination
• 22:24 Spreading Affordable Art Revolution

Transcript

Speaker 1: 0:02

Hello everyone and welcome back to the latest episode of Overcome Yourself, the podcast. As you know, my name is Nicole and I'm so excited to be here today with Kelly. Now, kelly is one of those people I don't know if you guys have ever experienced it where you meet someone and you just feel like you've been friends with them forever. Because that's really how it was for me and Kelly. We met each other and we're like I feel like we're just we've been friends forever, we're supposed to be friends, and so I'm so excited to bring her here today. We're going to talk about I don't know what we're going to talk about. We're going to talk about a lot of stuff, but, kelly, I want you to take it away, introduce yourself and tell us a little bit about you and what you do.

Speaker 2: 0:42

All right, well, thank. And what you do? All right, well, thank you so much for having me. I'm excited. We've been trying to do this for a while, so I'm glad it worked out.

Speaker 2: 0:50

I'm a disabled author, artist, speaker, disability advocate. Inclusion and accessibility, especially for people with invisible illness and invisible disabilities, is really, really important to me. That's what turns me on. I want everybody to be able to live their best life and like experience all that life has to offer.

Speaker 2: 1:11

Um, so my part in that is that I try to make art and specifically handcrafted, uh, folk art and artisan made goods uh more accessible to people living with invisible disabilities, not just as a product to purchase which is important in and of itself art is for everyone but also maybe as a hobby and a way to deal with the types of things that we deal with when we live with chronic disabilities or chronic diagnoses, especially invisible lives.

Speaker 2: 1:49

It's different. When I say it's different, it's not to say that being disabled in a way that is visible, like in a wheelchair or whatever, is more valid or less valid, but what I'm saying is, in a lot of conversations about disability rights, disability advocacy, there is this tendency to overlook or not talk about the fact that it is a vastly different world of needs for people with dynamic disabilities versus people with total immobility or reliance on mobility devices, and I really want all of us to be catered to and not just allowed to be in a space or accommodated to be in a space or the bare minimum to meet ada requirements, which is actually kind of bullshit, but like the best version of it right.

Speaker 2: 2:53

So that's my contribution is trying to bring art to more people and more education to people, especially women living with chronic illness and disability. Isn't chronic pain and spine issues women living with chronic illness and disability? Isn't chronic pain and spine issues? Um, that's who I'm mostly blogging for and putting my story out there for, so you're amazing.

Speaker 1: 3:14

You're so amazing, kelly, um, tell me a little bit about your story. So, um, real quick. Last month, a month before, I followed this other creator and it was like disability awareness month and she talked about how disability is one of the largest minorities and it's one of the only minorities that you can become a part of at any time of your life.

Speaker 2: 3:40

Tell me a little bit about that, yeah, it's literally the only like disenfranchised population. You become a part of literally anyone at any minute, and I guess that's where it's different for folks like us who maybe found out about things later in life or as adults. I remember I was speaking at Disability Awareness last year in the Grand Rapids area. I was speaking at Disability Awareness Day and I had a guy come up to me who was like I can't imagine the grief that you must have gone through. He said I was born with spina, bifida and this and that he's naming all these things so I was born with it. So, yes, it's been frustrating and I've had to adapt and and and fight for accommodations or fight for care. He goes but to to have been born able-bodied and then all of a sudden have your mobility stripped from you. I can't really imagine that. Like you know a little bit about your story, tell us a little bit.

Speaker 2: 4:47

So I was a regular, like mostly able-bodied person and, uh, I'd been in a lot of car accidents when I was younger. That weren't, weren't my fault, it was just a series of unfortunate events. And, um, I'd had some injuries to my spine and head and back and, uh, I'd been assaulted a couple times. I had a history of traumatic events, but I was like this person that had like aches and pains and what I now know is sciatica. But, um, even in college I have those things happening, um, and I took a lot of ibuprofen and did a lot of massage and chiropractic care and then it very quickly turned into. I became a woman who couldn't walk and I had no range of motion in my legs and over the course of two and a half years I was losing use of my limbs periodically um, loss of strength in my whole left side. Um I the pain was otherworldly. I was at like 10 out of 10 pain, 24 7.

Speaker 2: 5:58

But I was refusing narcotics and opioids because I was being medically gaslit and I was a medical mystery and I knew that if they put me on anything that masks the symptoms, they were going to call back good enough, and I was going to end up with a problem on top of a problem.

Speaker 2: 6:18

And maybe it's the flint kid in me or I'm just tenaciously stubborn as fuck, but I just kept fighting and I kept not taking the opioids and narcotics and I kept firing doctors and hiring doctors and researching and seeking answers and eventually we did figure out that my spinal cord was actually being crushed.

Speaker 2: 6:47

In my body I had had a very rare rupture, a centralized rupture of spinal disc at the very base of my thoracic spine, so right under my bottom lip. And that's a very rare spot because that part of your spine is not mobile, so it's not normal or common for that to be a spot where you have a disc rupture. But then on top of that, instead of rupturing where it spilled out to one side or the other so that they could see it on MRIs, it was a centralized rupture, so it ruptured and exploded straight back. And so all the years that people weren't believing me about my symptoms and things, all the new bone cells were growing onto this rupture and turned into like a calcified mass and it was growing between my vertebrae, it was crushing my spinal cord and that was what was causing all of the pain and symptoms. But it took two and a half years to figure that out.

Speaker 1: 7:56

So um, yeah, wow, wow, wow. And now, now you have come to the other side of that. Like the other day you were like in the gym, lifting up like more than your body weight. Like, tell me about that. Recovery is not linear.

Speaker 2: 8:14

I really want to stress that for people, even where I'm at now is not where I was a year ago, let alone five years ago. So I had four neurosurgeries in the span of 11 months and then the next following year I had two abdominal surgeries and one was a hysterectomy. So there's been a lot of starting and stopping rehab, starting and stopping and starting something. And then in 2021, I had a fall and it's dangerous to have a fall in your spinal fusion patient but I fell backwards into a tub. Um, because my feet are. I have neuropathy in my feet now, so I basically have like diabetic feet, so I didn't feel myself bump up against the back of the tub when I went to take a step back in the bathroom from the sink and I fell backwards into the tub in my um, my rib cage, where my fusion is hit, the soap dispenser in the wall. I know it's horrible. I'm I'm sorry for everyone. I'm so sorry, in pain for me right now. I'm so sorry.

Speaker 2: 9:28

I tell you that because for a year we couldn't figure out why my spine was plunking and it turned out that it was fine. I thought I was going to paralyze myself at every turn, so I was like afraid to move. I was having panic attacks and it took about a year to figure out what had happened. So my two floating ribs at the bottom that only attach in the back, my spine hardware. They had to take some of the bone away to make room for some of that hardware. So when I fell on the soap dish it basically was just like it took out the last little bit of bone holding those floating ribs in place. So they're like to see and unseat randomly, but sometimes it's so loud people can hear it. So like doctors were looking at me like is this gonna be okay?

Speaker 1: 10:17

I'm laughing with you, not at you.

Speaker 2: 10:22

I'm just you have to laugh because you don't cry and so for like 10 months.

Speaker 2: 10:29

they're looking at me like what the fuck? And I'm looking at them like what the fuck, you know, and I'm like scared. We finally figured out which kind of ends up being kind of funny, and so I was like, all right, I'm taking this back into my own hands, I'm taking my power back. I did have another disc that has collapsed under my fusion. So a year of atrophied muscles from not really moving and then having that collapsed disc.

Speaker 2: 10:58

Last August I had a spinal nerve ablation to burn off the nerves that are causing all the pain in my back and basically I just have to do this every six months until it stops working and then I have to have another fusion surgery. So this is like my opportunity to be responsible and take responsibility for my own vitality, right. So I was like, all right, burn these bitches and let's go. So last year I started walking with petunia, my dog. Uh, 10 minutes, 10 to 15 minutes at a time, three to four times a day.

Speaker 2: 11:36

She was recovering from the reconstruction surgery and I I needed to start my spine rehab over. So we did it together and, uh, we just kept slowly going a little bit farther and a little bit longer, and there were days that I cried because the muscles in my back and legs hurt so bad, because they were so tired just from holding me up. But like that's what you have to do, like you there's, you can't get through it without starting right, you can't get to the other side without starting. So, yeah, the other day I'm now for the first time since 2016, it was 2017 when my spine started falling apart and for the first time since 2016, I'm under 250 pounds and I pushed 277 pounds for three reps of 10 on the vertical leg press the other day of the gym.

Speaker 2: 12:36

That is amazing gym, which is amazing. It is amazing about overcoming yourself, right yeah for sure.

Speaker 2: 12:45

And Jeff said to me he was like I remember when you first started this leg of your journey and you would get so embarrassed if any of us walked out while you're doing your exercises. You know, in the in the uh living or whatever because I felt like I did feel embarrassed by how hard it was for me to do so little compared to other people. But that's not the whole story. The whole story is I have limitations and uh and special needs because my body is no longer composed of all of its original parts. But isn't it amazing that I had to have a seven and a half hour long surgery to uncrush my spinal cord and five years later I'm pushing 277 pounds on a leg press, like I'm a walking miracle. But you have to make yourself the miracle. You can't just like blow his knee. It and I wanted to.

Speaker 2: 13:57

I sat in that space for a while. I can't believe I have to do this again. I've already done this six times. The physical therapists are basically laughing at me because they're like you should know what to do. But what they don't understand is that, like I, my limbs were not so like. I'm still learning how to know which muscles in my legs I'm working, or which muscles in my feet. So it's painful because I have to learn all over again how to reuse everything and in a complete body, and not always compensate for one side of my body. It's been a journey, but yeah, and not always compensate for one side of my body, it's been a journey, but yeah, I wanted to give up many, many, many times momentarily and I never did, and that's a lot, that's amazing.

Speaker 1: 14:53

Yeah, I hurt my back. When I was probably like nine years old, I was on a boat. I don't talk about the accident very much, but I was sitting in the front of the boat. The boat went up. I went up, the boat came down, I came down and it knocked the wind out of me and that was the first time that I was like, oh my God, I'm dying. And I was like I legitimately thought that I was dying and I was like they're gonna have to turn this boat around and, just, I don't know, throw me in the water or something.

Speaker 1: 15:28

And ever since then, you know, I was always told oh, you're too young for back pain, you're too young for your back. And I remember once I was always told oh, you're too young for back pain, you're too young for your back. And I remember once, when I was little, I overheard someone saying. I was saying, oh, my back hurts. And then somebody said, oh, that's just something she heard me saying and she's repeating it.

Speaker 1: 15:49

And then I realized that nobody believed me and I was in pain and everybody thought I was a liar and I was in pain and everybody thought I was a liar, um, and so like I, you know, like that's one version of medical gaslighting, talking about like invisible disabilities, where sometimes you mask right, you're a little kid things, you know, you overcompensate, but then everything hurts and you you don't understand why. Um, and then when I turned 21, everything kind of came to a head, because I was working as a server, as as a waitress, in a restaurant, and I was carrying trays that were way too heavy, and I was carrying them, like on this side, and it got to the point where I couldn't take a step without pain, you know, and I went to the doctor and the doctor was like your spine has been fused together. I've gone back since, like that's how close those those bones were, and somebody else was like, well, no, they're not fused together, but they are, like you know, they're there.

Speaker 2: 16:49

And it's not like. It's not like ankylosing spondylitis, they don't think. They think it's like they were injured for so long that they, that's from the trauma.

Speaker 1: 16:58

Yeah, that's, that's from the trauma. From it, yeah. And imagine, like you know, being like 12, 13, 15, 16, and like you go to PE and they're like do a sit-up. And you're like, no, this hurts me. And they're like you're being lazy, do a sit-up. And so, like my whole life, I'm being forced to do things that hurt me because nobody believed me. And so, when I turned 21, I finally had to be like you know, I got this news and the doctor was like you have the back of an elderly person, like like this is like your whole back is messed up. You have a hump, like all of this is all messed up. And I realized in that moment that I was going to have to choose my heart. He's like if you continue down this road, you'll be in a wheelchair in less than five years. And what I heard was well, there's another road. If, if this is the road I continue, well, what's the other road? Because obviously this is I'm.

Speaker 1: 17:49

I'm on some kind of intersection here right, if this is one option, there's got to be another one. And then, like you, I had to choose my heart. And when it sucked, when I was in pain, when I was, you know, hanging on my inversion table or doing like massages massages are not fun like they show on tv, okay, like they are so painful, um, you have to choose your heart, like in the days where you work out and you pop something and now you can't walk for three days. Well, that's how I wrote my book, right. And so I want to bring it around to telling me a little bit more about the affordable art revolution, because you kind of took where you were and you were like what can I do from right here? And you have built something that's just amazing. Tell me about it.

Speaker 2: 18:36

I appreciate that. Yeah, well, it started because back when my journey started, no one was talking about medical gas lighting and nobody uh, it just it wasn't a common topic, it wasn't even a phrase. Like I remember when I first started using medical gas lighting as a hashtag, and every single time it would be like less than a thousand. Less than a thousand, because I was like, as far as I know, I was the first person to start calling. Is that, um, and I? I I fought really hard to raise awareness and I had great podcasts. It was really fun and it wasn't just about that, but it was like, uh, I was going through this full journey of trying to figure out my health and going through all these surgeries while I had the podcast. So all my listeners got to like, follow along with this, like journey, and um, I started writing for a website called spine nation and it was so cool. It was like a um, it was a social networking site for, for people with spine and chronic back issues and, uh, and so I built this name for myself, right, but then, after all the surgery, so that was like 2017 to 2020, that's what I was doing. I wrote a book, I have podcasts. I was doing all these different things to raise awareness. I was fighting really hard. And then in 2021, in January 2021, I left Tennessee with nothing, uh, to get out of a toxic, horrible living situation and I was better from my surgery. So I came home to Michigan and I really didn't know what I wanted to do with, what I wanted to do with myself, because I was still fighting. So at that point it had moved from a medical gaslighting situation to a legal gaslighting situation, because I'd had all these surgeries and I was so messed up and unwell but my disability benefits, my social security disability benefits, had been denied and I had to appeal it. But all my appeals got turned down so I had to sue the federal government. I sued, I filed suit against the federal government in the fall of 2020. So guess how long it took to get into court again to like right that wrong well, covid happened. So it took until 2022. I won my case in June of 2022 and I did not get paid until October of 2022.

Speaker 2: 21:04

So all of those surgeries, homelessness, uh, moving from another state, complex post-traumatic stress disorder I was having a huge breakdown. I was not okay. So for two years I was pretty much completely absent from the online world. I would occasionally pop on facebook and post something or whatever, but, like as far as my work was concerned, I had had to put it all on the back burner. While I dealt with this case, when the case was over, I was at a crossroads, like you were at, and I was like you have a choice. You need to recognize and I'm saying this to myself I was like Kelly you need to recognize when it's time to put down the fight. You won the fight. You sued a billion dollar multinational corporation and won. You sued the federal government and you won. You solved your own fucking medical mysteries that no medical professionals could freaking figure out. Uh, and you've create, you created a career for yourself from your couch when you couldn't walk. Put down the fight, like, but I didn't know how to move forward from there.

Speaker 2: 22:24

And so, christmas eve of 2022, I'm sitting on a couch with petunia, all by myself, looking at the um twinkling christmas lights and watching schitt's Creek. My family was at a family gathering. I was not with them because I'd had a spinal procedure the day before and I was in too much pain and I was thinking, like, what am I going to do, like what is the next thing to do with my life? And I thought what saved my life, what kept me going? Because everybody kept saying, saying how have you done it? How did you make it? Sewing, embroidery, art, that's, that's what saved my life, that's what kept me going, that's that, that was it. So all of a sudden it dawned on me like what?

Speaker 2: 23:10

And the thing that I never liked about the idea of selling my handmade goods is that everybody was telling me things like you need to be charging $20 an hour. And I'm like okay, one heirloom Christmas stocking that I make takes between 47 and 72 hours. If I charge $20 an hour for the work that I do, literally 1% of the population is going to be able to access it and that's bullshit. And for me, I've been on the side of that. I've been standing at art fairs or museums or whatever where I wanted to be able to purchase a piece of art that spoke to me and I couldn't because I had to think about whether or not I was going to be able to afford to eat for the next three days if I bought a $50 piece of art. And all of a sudden I thought what if you could find a way to make make art more accessible to people and and keep creating, because, whether people buy your shit or not, you're gonna keep making it because it's what saved your life, it's what you do, it's what you love to do and you love sharing it with other people.

Speaker 2: 24:26

So I decided to create an art store where everything that is not a custom, commission or personalized item that somebody orders uh, it's pay what you can, or or pay what feels good to you, and there's no wrong answer. So when a person goes to my website and they check out an item, they pay for shipping and tax and then they decide either immediately after ordering or once they receive the item. They decide what to put in my virtual tip jar and that's whatever feels right for them. And, um and I stress that, because some folks can afford it and they love the idea of helping other people, have access to it. So I'll have people who pay me 200 for a set of christmas ornaments that I would normally charge 75 for if I was going to put a price on it, but they pay way more than then. I would probably price it because they like the idea of helping other people, and people with invisible disabilities especially, access these handmade goods.

Speaker 2: 25:46

So it's really special because, like, it's creating a community at the same time as, as as I'm selling art, um, and I I say positive intentions and prayers over what I'm creating. Uh, a lot of times, whatever I put in my shop is whatever my heart feels like making at that point. So I'll just like pray over it or, like you know, speak positive intentions and just say, universe, please get this piece to the person who needs it the most and like, let it bring them joy. You know, and um, and, and I'm intentional about that because I do believe that life is all exchanging of energy and I believe that things can hold energy if we want them to, if we channel that, that positive energy, um, and so, uh, it's been a really beautiful like.

Speaker 2: 26:47

I had a young girl at an art at a in-person event I don't do many in-person art events because it's physically difficult, uh for me, but if it's close to home, jeff will do all the setup and take down and I had a teenage, uh, young lady come to me at a show and she'd fallen in love with the piece and she said I really don't have any more money I can spend and she was like but it means a lot to see you here, uh, because I live with a lot of the same diagnosis that you live with and it makes me feel good to see someone like me doing what you're doing, like it makes me feel like it's possible.

Speaker 2: 27:26

And she, she, she told me that she had just had her most serious suicide attempt, like a month or two before that, and I asked her how she was doing and everything. And we talked and and I shared with her, you know, and and I ended up just giving her the piece. I said I just I want you to have this piece. I like if it speaks to you that much, please take it. And like her whole body lit up, like not just her face but like I really. I mean she just like came to life and I was like that's why I do what I do, because somebody else paid 70 bucks for two ornaments that night. So if I give an embroidery hoop to a young girl, maybe the next time she's feeling that alone and isolated, maybe she looks at the embroidery hoop and remembers that a complete stranger cared enough to give her a free piece of art. I don't know, but that's my hope, you know that's amazing.

Speaker 2: 28:26

That's what the affordable art revolution is. It's, it's, I say my mission is to spread love and joy to spoonies everywhere through art in the written world. So I include my book in it, normally a print copy of my book, because it's full of color photographs and things. It's 25.99. That's not accessible for people who are disabled a lot of times and on limited income. So I had at one point I made the ebook like $2.99, um, and now I created the book cast, where I created a podcast, um, where I read the whole book, um, and that's $3.99 for the whole series because that's more accessible and for those who might be like, not able to read or have you know whatever, it makes it more accessible to all kinds of audiences so I'm trying to invent everything I do in a way that is revolutionary as far as accessibility and inclusion.

Speaker 2: 29:26

So yes, you're amazing.

Speaker 1: 29:29

And just a reminder, like something that kelly mentioned in the beginning ada, if you run a website, you are also fall under the umbrella of being ada compliant. Your website needs to be compliant to anyone with a disability, so, like if someone's using a screen reader, they need to be able to, for example, know what's going on in the picture, so you have to include your alt descriptions. So, yeah, all of that is super, super important. I did want to mention that. Now you said there's a free gift for the audience that's listening.

Speaker 2: 30:02

Yes, so I'm sure you'll include the link in the show notes.

Speaker 2: 30:08

But I actually created a coloring book out of my tattoos. Like I took photographs from my memoir and turned them into coloring book pages, and then I also made some coloring book pages with like different clip art and stuff that are related to the stories that I tell in my book or to the tattoos that I have that might not appear in the book. So, yeah, it's pretty fun. Um, I think you were the first person I showed it to and I made it. You were like that is so cool and I was like, yeah, I think you were like, um, you went way above and beyond what I was expecting.

Speaker 1: 30:47

Yes, it's amazing. It is amazing and like, so helpful. Like, as adults, we don't play right, and play is actually apparently the opposite of trauma, and so it's really important for us to take time, even as business owners, especially as business owners, when we're brainstorming, when we're putting things together, and coloring is one of those things that lets your brain kind of just chill right like it. You can just, you're in the lines, you're being creative, um, and so I think that's just an amazing, amazing gift that you give the audience to help them really like overcome themselves, to help them yeah, I mean right from that perspective.

Speaker 1: 31:26

But I got through one of the hardest periods in my life like coloring and I didn't think that when you said you're still spreading affordable art with your freebie like and you're sharing art and people are involved in the process, like they get to make their own art, so I think that's amazing and they get to color my tattoos how they want.

Speaker 2: 31:46

Like I think that's cool too. They get to color my tattoos how they want. Like I think that's cool too, because have you ever seen? I like, have you ever seen somebody's tattoos and you're like that would be kind of cool, but I would do this and this and this they were. So I was like like what if I found, how cool would it be?

Speaker 2: 31:59

I color this one in sometimes and like I was like how cool would it be if people tagged me on social media. They were like this is how I colored your tattoo, so please, if anybody does that, please tag me and I'll like yeah, you're, because I'll die of happiness. I just love imagining somebody doing that yeah, so free, free tattoo coloring book.

Speaker 1: 32:30

Premieres. Truly All right. So the link for that is going to be down in the show notes or in the comments, depending on where you're watching this. And, Kelly, thank you again for coming on. This has been absolutely amazing. Thank you for joining us. Do you have any last words of wisdom before we sign off?

Speaker 2: 32:47

Follow your gut and pay attention to how you feel versus what you think, Because our brains especially if we are ultra rational people can rationalize anything and make anything a good idea. So pay attention to how it makes you feel in your heart and in your gut and try to stick with that.

Speaker 1: 33:12

I love it. Thank you so much, Kelly. We'll see you next time. Thank you for having me. Bye.