Week 1 | The Origin of Broken & Beautiful
Hello everyone and welcome to the first ever podcast episode of Broken & Beautiful: The Podcast. I am your host, Amber Kristen Stewart. Thank you everyone who is joining us on this journey of podcasting. It is not as easy as I thought it would be, but is anything in life really? I am very out of my comfort zone doing this, but I feel so led to do it.
And so here we are, and um, when something good is about to happen in your life, or maybe through you or because of you, the enemy will always find a way to try to stop it. And if that happens, and you know that you’re doing what you’re supposed to do it. If, if everything is easy and everything just happens, and flows, then… I mean maybe, maybe you’re supposed to do it, but in my experience, um, when I’m doing something positive there’s… everything just goes wrong it seems like. And so that happens a lot when… since I’ve started to try to work on this podcast. And it started when I contracted a cellulitis infection last week.
And for those of you who do not know what cellulitis is, you should be very thankful because it is no fun at all. It’s basically a bacterial infection in the skin, but it’s incredibly painful, and the skin easily swells up and becomes like beet red and hot to touch. And you can’t touch it because it’s just in excruciating pain.
So that is how last week started. Um, it took a while to figure out the correct, um, antibiotic dosage for that. And we finally got it under control. And I was starting to feel better when I went to get into my wheelchair only to find that my wheelchair was broke. And I couldn’t use it. So, the repair technician made it seem like it would be quite a while before they could fix it. But everything came together, and they were able to fix my chair and order a new piece for it. And I’m finally up in my wheelchair today and everything kosher right now. So, hopefully nothing else happens.
But, um, I realize now that doing a podcast is not something that you decide to do, like, on a whim. It’s something that is very technical. And I know technology, like, I love technology, but I’m not quite familiar with the sound settings and the sound system and everything that encompasses what a podcast is. And so, this is definitely a learning experience for me. So, if I’m a little rusty at first please just have some grace with me because... you know everybody has to learn, and I’m, I’m learning as I’m doing this and trying to develop better, better skills, and um, trying to provide the best audio experience for our listeners.
So, since this is our very first episode, I wanted to share my story with you guys and kind of give an overview of what we are going to talk about in future episodes. But I cannot properly share my story without sharing someone else’s story first. And that is my sister Lindsey Amber Stewart.
Lindsey was the firstborn child of my amazing parents, Matthew and Alice Stewart. She was born in 1987 and immediately the doctors knew something just was not right. She was diagnosed immediately after birth with a neuromuscular disease called Spinal Muscular Atrophy type 1. There are four kinds of spinal muscular atrophy, or SMA. Type 1 is the worst kind that you can have. It develops in infants up to six months old. And it was basically just a death sentence. Lindsey lived six months and suffered a great deal of pain during her time on earth. And then she went home to be with the Lord and suffered no more. I cannot wait to see my sister someday in Heaven. I am looking forward to hugging her neck and telling her that I missed her and that I tried to make her proud, just in my life. So that is the story of my sister, Lindsey Amber Stewart.
After my sister passed away my brother was born in 1989. And he was a bouncing, healthy baby boy, and the pride of my mom and dad. They were so happy. And my brother really helped them to move on after such a traumatic battle that they had had with my sister.
And then two years later… well, you know what they say… they save the best for last. So, I was born in 1991. And when I came out everything seemed okay. I seemed like a healthy baby girl. And we went home to live life. But unfortunately, four months later, I stopped moving or trying to hold my head up or roll over. I wasn’t reaching any milestones that other babies reach at that age. So, my parents took me to the doctor, and they did tests where they determined that I did, in fact, have the same diagnosis as my sister Lindsey, which is spinal muscular atrophy type 1.
My sister had died from this disease. And at the time, over ninety percent of babies died from this diagnosis. So, when the doctor told my parents to take me home and love me because I wouldn’t live to be two, they took it very seriously. And they took me home. And, um, God had a better plan for my life. And here I am at thirty-two years old. I like to joke and say that I have surpassed my expiration date by thirty years! And, um, has it been easy? No. But nothing worth having is easy.
I have a very different life than most people. I rely on twenty-four-hour care. Uh, I am hospital-level care. I have a “trach”. I’m on the ventilator twenty-four-seven. I have a feeding tube… the whole shebang. You name it, I probably have it. And, and that’s okay because I’m here. And is my life different? Yeah. But that doesn’t make it any less beautiful than anyone else’s life that maybe doesn’t have a disability. My life is amazing. I don’t let my disease hold me back from living life to the fullest.
Um, I go out. I like to go take pictures with myeyes. I use eye gaze technology to operate my tablet, my cellphone, my television, and my wheelchair. So, that has been a tremendous blessing and given me so much independence that I wouldn’t have had any other way. So, I love to take photography outside, when it’s nice out.
Right now, it is 33 degrees outside on March the 20th, by the way, and I am freezing. So, I’m not leaving my house until it hits 70, pretty much. My, um, disease makes my body not do well in the cold weather. And so, I pretty much hibernate from November to April. And so, when it warms up, I love to go outside and take pictures. And I love make-up, nails, beauty, all things girly.
And I love to be with my family, and my dog Darla, she’s my baby girl. And we spend our time together. Um, so I go out to the movies and the mall and… anywhere you can go, I can go. I just have to take my wheelchair and my ventilator. And it’s not a big deal. So I am very thankful that God has taken a very broken life and turned it into something beautiful and amazing. And that brings us to the story of Broken and Beautiful.
So how did Broken and Beautiful begin? Well, it was in the Winter of 2018, and I was going out of my mind and trying to find something to occupy myself until it warmed up outside. So, I went on Pinterest because I am a Pinterest fanatic, and my entire life is on Pinterest, and I found a craft that you can do using alcohol ink and a regular picture frame. And I thought, “This looks like fun. Let’s give it a shot”. So, my nurse help, helped me to make this craft. And it turned out really beautiful. And I thought, “You know, I can maybe make this a little side hustle”. So, I put it online and I asked if people wanted to order pictures that I was making with this alcohol… And immediately one of my friends wanted to buy a piece of art. So, I was excited about that. And one day I had an order for a large 16x20 framed piece of glass art. Well, I had it done, it was beautiful. But I had to put the glass pane back in the frame because you have to take it out to do the alcohol. And it burns the glass. And then you put it back in the frame because nobody wants just wants a plain glass pane. You, you have to put it in a frame.
So, the nurse went to put it in the frame, and it cracked halfway down the middle. And I was devastated. And I was… I started to cry because I thought, “I worked so hard on this and now I can’t give it to my customer”. And it was then that I heard the whisper of God saying, “Amber, this is your story. Use it”. And so, I did. And that day Broken and Beautiful was born.
And I would just like to say that I was the OG Broken and Beautiful before I heard the Kelly Clarkson song Broken and Beautiful. So, I just want to clarify that I was the original Broken and Beautiful.
But I told my mom what I was going to do. And I was so excited.
I said, “Mom, the Lord spoke to me, and He told me to do this!”, and she thought I had lost my ever-loving mind.
And she said, “You are crazy. Nobody is going to buy a broken picture”.
And I said, “I’ll show you, watch and see.”
And it just kind of took off after that. And the Lord, uh, has used my story and my art to encourage and inspire people of all walks of life. And it has even made a platform to share hope with a very dark world.
And so, why are we making this podcast? Why, why am I doing this? Because honestly, I already told you this is very out of my element. I don’t like to speak in public. I get nervous because some people don’t understand what I am saying. I’m very self-conscious of that. Um, I feel a lot like Moses, in a way.
If, if you read the story of Moses, Moses was not an eloquent speaker. Um, a lot of people believe he had a stutter or some sort of speech impediment. But God calls him to lead the entire nation of Israel out of slavery and into the promised land.
And he told God, like straight up, “I can’t do this. I cannot speak fluently. You expect me to talk to an entire nation and lead them out of slavery? There’s no way I can do this”.
And God used him and his brother Aaron to bring an entire nation into a land of freedom. And that is very important to me. So, if, if Moses could lead an entire nation out of slavery, and he had difficulty speaking, I think I can do a podcast, just saying.
But I’m, um, I know that some people will not understand what I am saying, and some people might not support what I’m saying, and that’s okay. I’m doing this because God told me to do this. I try very hard to listen to Him, because He’s never let me down. When we live in a world where there is so much division and darkness and hatred, and somebody needs to be a beacon of hope. And if that has to be me, then so be it.
But we need to come together and be united. Unfortunately, the word “disabled”, or “disability” has a negative stigma around. And I’m not sure why. But as far as I’m aware it has always been like if you say that you’re disabled, it’s “aww, I’m so sorry” “aww, you poor thing”, and that is a common misconception. It’s that if you have a disability, you are somehow lesser of a person than people who do not have a disability. That is a lie from Hell. And it needs to go right back where it came from, because I will not accept that at all.
When, we need to bridge the gap between the disabled community and the able-bodied community because it’s sort of like, “Oh, you’re disabled? You sit over there, and we’ll sit over here, and we just will pretend that you’re not there”. We are here and we are people too and we all want the same thing. We all want to be loved and accepted and feel like we belong.
And there are not many people who are brave enough to stand up and say, “There’s something wrong with this picture”. You have Shane and Hannah Burcaw who have a YouTube channel Squirmy and Grubs, and they are adorable and so cute. Other than that, I have not come across somebody who is disabled who is advocating on behalf of the entire disabled community. And so that is why I’m here.
I want to connect people. I want people who are not disabled to realize that we don’t have cooties, okay? We’re not contagious, I promise you. We have the same hopes and dreams as you do. And our lives may be a little bit different, but I’m sure that we have a lot more in common than the things that we don’t. So, that is the reason why I’m doing this podcast.
And I really hope that I hope that we will gain an audience on here, of people who stand up and speak out and say, “Yes, this is how it’s always been, but that doesn’t mean it’s okay. It has to stop”. And disabled people and able-bodied people, we can come together because life is hard. And it’s a lot harder if you do it alone. And if we can look past each other’s differences and embrace one another for who we are, then it will make this journey of life much more bearable and much more enjoyable for us all.
So, what else are we going to cover in this podcast? We are going to cover current events. But unfortunately, the news doesn’t really focus on disabled people and there’s a lot more disabled people in the world than people realize. I think I saw an article that I saw recently from the CDC. And I know I’m not sure we can actually trust the CDC really, but anyway, um, one out of every four adults in the United States have a disability of some kind. That is 26% of Americans have a disability. And very few are as result of an accident. Most of them are from disease.
And, so, we want to cover different current events that the news doesn’t really cover. Now I look up different news outlets for disabilities. And I found a few. The first one that I found is “disabilityscoop”; disability-s-c-o-o-p dot com. And it has a nice layout, it has some nice articles, but this website is dedicated to news on developmental disabilities, and not the entire disabled community as a whole. Granted, there are several individuals with developmental disabilities. And if you know of someone or if you yourself have a developmental disability then the disabilityscoop website will be a good resource for you. But for people like myself who are not developmentally disabled, we are merely physically disabled, it kind of leaves us out in the dust, so moving on…
There is another news service called the disability news service, or D-N-S, which can be found at disability news service dot com. And they have sections on independent living, activism, benefits, and human life, they have… they have recent articles, but not necessarily day to day coverage. But overall, it is a nice website, and you might want to check it out sometime and see what’s going on.
But there are also other websites that I personally think are better. One of those is the National Public Radio section on disabilities. You can find that at n-p-r dot org, and there is a disability section. If you cannot find it, you can always type in “disabilities” in the search bar of the website. If you’re really lazy like me, just type in “n-p-r disabilities” and it will pop right up for ya. So that has a lot of good news articles and things that you can listen to on it.
One article that I came across was the ethical concerns that accompany gene-editing for diseases. And that is something that, for me personally, um, I feel like the ethical dilemma with gene-editing is similar to the moral dilemma of stem cell research. Um, people say, you know, stem cells come from aborted babies, and I do not support abortion, however if somebody came to me and offered me a cure for my disease and it has stem cells in it, I would not turn it down.
So, these are ethical issues that we need to talk about because, again, the entire belief behind Broken and Beautiful is that God can take anything bad, or evil, or broken, and turn it into something beautiful and amazing and beneficial. So, that’s just one article that I found on n-p-r national public radio.
Moving on, we have the New York Times. I mean what can you say? It’s the New York Times. So, they do have a section on disabilities, uh, under the health section. But unfortunately, you do have to pay a fee and subscribe to read their articles. It’s not a lot, but if you are in a position when you’re not able to subscribe then you can’t have access to their content. So, there’s that.
There is an article that I found on there something about how we should value the art of dependence, and I thought that was really an interesting concept because everybody is encouraged to be as independent as you possibly can in life. But there’s also a certain beauty in dependence that is only found when you have a disability. So, I thought that was an interesting article from the New York Times.
Lastly, and this is probably my favorite option for a news outlet. This is The Guardian. And the website is the guardian dot com. Um, make sure that you are in the US edition. Don’t be like me, I somehow wound up in the UK edition, this is fine if you’re in the UK. But if you’re not, then you’ll have to go to the top-right corner of the screen. There’s a little drop-down area, and you can select from four different editions. This has a US edition, a UK edition, an Australia edition, and an international edition. So, if you’re like me and you’re from the good ole’ US of A, make sure that you are in the US edition.
And they have a very nice website. Not only that, but they have articles that come out every single day, which is not like any of the other news sources that I pointed out before. So, if I had to choose which of the news outlets to pick for disabilities or disabled people, it would be The Guardian. Now it will ask you to provide a donation, but you don’t have to, um, you can. And if you can, that’s wonderful, because they are run by donations. So, this again, if you can support them, that’s great. But if you can’t, you just click the “X” on the top-right. And you can still read all the articles and everything for free.
So, yeah, those are some topics we’re going to talk about. Um, we are also going to have some guest hosts on here. I, I have a few lined up I’m trying to ascertain some more. But, yeah, we will have some guest hosts on here.
Um, I would love your feedback. If you guys will drop an email to broken underscore beautiful at yahoo dot com and tell me what you think of it. Do you love it? Can it be different? What would you like to hear us talk about on here? What are some misconceptions that people have of disabled people? And how can we set them straight? Um, I would love to hear what you would like to hear in the future.
For now, we are going to wrap this up. Uh, this is the third time that I have recorded this, so I really hope I can keep everything together and get it out by Thursday. So that would be the twenty third of March, and I’m hoping to get it out there by then. But if I can’t, then we will just keep trying.
And I pray that this podcast will be a blessing to you, and that it gives you some encouragement throughout your week. And also, if you’re struggling, if you’re feeling overwhelmed by life, will you contact me? Reach out. If I can help, I’ll help. If I can pray with you, I would love to pray with you.
I’m doing this podcast to share the message of hope and to help people realize that we’re not so different after all. And we can all rely on each other and support each other. So, yeah. That’s all…
Anyway, am going to wrap this up and try to start editing. So, I will talk to you guys next time. And I hope you have a great week. Bye for now.