Maintaining Hope in Adversity
Speaker 1 (00:00):
Sarah, I'm so glad we got to come together this weekend and spend time together.
Speaker 2 (00:06):
Yeah, me too. It's been good.
Speaker 1 (00:08):
And as I've shared with you, I'm working with women that some have, a lot of them have experienced cancer and there's this transition, bridging the gap, and you have such a wonderful story where you've overcome, you've bridged your gap, and of course you're still bridging it.
Speaker 2 (00:29):
Yeah.
Speaker 1 (00:31):
I asked you if you would share your story with everybody because I think it offers a lot of inspiration for women who may be struggling to bridge that gap.
Speaker 2 (00:39):
Yeah, yeah, absolutely. Well, for me, it looks a little bit different. I've had Crohn's since I was 12 years old, and that was just a really long and hard battle in itself. I was sick for a decade, chronically ill, and struggling with that, and not having a quality of life. And as I got older and into my early twenties conversations and online research led me to this idea or belief that I might end up with a colostomy bag, whether it would be temporarily or permanently. And that in itself is a procedure or a life change that is very scary for people. I've come across people who have said that is the last thing they would ever want to happen to them. I've had people say that they'd rather not have made it than to have to deal with that.
(01:39):
And so when that actually did become my reality at 24, like anyone else going through something medically or spiritually or what have you, you're faced with a choice to make in that moment. And am I going to overcome this and not let it define me or change my life for the worse, or am I going to figure out how to make this work for me and still live a positive life in a happy, healthy lifestyle? And for me in that moment, anything else I faced, I just knew that I was going to make the best of it, and I wasn't going to let it stop me from enjoying life, especially after so many years of my prime youth, unable to. And so it kind of just started with that decision is I am not going to let this get me down, even though you will have moments where it's hard overall, I'm going to accept it and move forward with the mindset that I'm always going to be okay, this is always going to be good.
Speaker 1 (02:47):
When those negative thoughts come in and really scary things, what are some things that you would do to battle that?
Speaker 2 (02:59):
Yeah, so at first, of course, I was, you're in the hospital for a period of time. When you go through these types of surgeries and are in the hospital, life doesn't feel real. It's almost like its own reality in a sense. And so when you get out, I think that's when it's the most struggling, is now that you are in reality and you're on your own and living a regular life just like everyone else around you, but you're not regular or normal. And those thoughts happen. And I think for me, the important thing sometimes is that it's okay to acknowledge them. You can't beat yourself up for having a moment and being like, this is not what I wanted for my life, or sometimes this does suck and this is hard, or this is painful, or I might look in a mirror and see my body and feel sad sometimes. And I think it's important to allow yourself to feel that way, but also limit the amount of time you stay there. Don't stay in that moment too long. Don't stay in that thought. And while you experience it and let it kind of flow through you, you give yourself just a moment. And then after that, you also give yourself a moment to acknowledge things that are beautiful about you or things that being in this situation now positively means for you. So because of my surgery, I now can be healthy. I now can have a quality of life. I can go out with my friends. I can go to the beach. I can plan a day to do something and not worry about feeling sick or having to come home or X, Y, Z. And then also you can look in the mirror and be like, well, this happened to my body, but because of that, my body is also flourishing in so many other ways.
Speaker 1 (04:42):
Did it take you time to reach this point where you would think about the good things?
Speaker 2 (04:52):
For me, no. I think again, from the beginning, I made a decision that I wasn't going to let it have a negative impact for a long time. And of course, over time, the older I've gotten and the longer I've been experiencing my life with a permanent ostomy, those tools change and become, you have more tools in your tool belt, you have more things that you're aware of, and also your perspective of what's important and what's not important as a woman changes too. So in time that's evolved, and I've had a little bit, I think more or even better thoughts to replace or things to acknowledge about myself, but you definitely, those first couple of years you're fumbling through and trying to figure out. And for some people, it could be a couple of years, it could be a couple of months. But you're trying to figure out how to find myself now with all of these changes? And that part takes time. Even if you are making a conscious decision every day to not live in the negative, it does take time to really get comfortable and gain that confidence back. So that's something that took time, a few years, and it wasn't just confidence in how you look, but also how you feel.
For me, it's confidence in how I manage my bag if I have an accident or a leak in the first couple of years, that was just so, oh my gosh, what am I going to do? And you feel so anxious and worried, and now it's like, if I have a leak, I could just fix that in two minutes and not worry. It's not as much of a panic or a worry. And I think that could be true for so many things in life. And I think that's really what took time: building that comfortability and confidence within myself, and then just being able to build on that and feel more free.
Speaker 1 (06:47):
So you went through a period where you had an Instagram or TikTok and hundreds of followers.
Speaker 2 (06:54):
Yeah.
Speaker 1 (06:55):
Now, what inspired you to do that, and what did you get from it?
Speaker 2 (07:00):
Yeah, so I initially started with Instagram and then created a blog. So I made an Instagram page about a year or so post-surgery for my ostomy, and the original inspiration for the Instagram page and my blog was more so an outlet for me to express my perspective on what living life is like, but also from a positive voice. And some of my blog entries are from a real space. This is some real stuff that I deal with. And sometimes it's not always fun, and sometimes it is hard to be, oh, this is great all the time. And so I think my inspiration at first was I wanted this outlet, and then I also wanted to connect with people who would maybe be facing the same thing as me, or maybe right before, or maybe they have this for them. It's not a lifesaving thing where they don't have a choice.
(07:55):
Some of my blog entries are from... They have an option, and they're so scared to just doing it temporarily because of what they think it's going to be. So my inspiration was to have an outlet and hopefully connect with people. And if I could tell a few people, like, Hey, I know you think this probably sounds like the worst thing in the world, and you probably had this idea of what you think it's going to be. And even your doctors can give you some insight, but no one can prepare you other than someone who is living it.
(08:25):
And that's not something doctors can do unless they actually are living it. And so that's kind of where it started. And a few years later, TikTok became a thing. It was COVID, and everyone was going on TikTok and going viral. And so I one day just uploaded a video and a bikini with my ostomy exposed, and I had a little caption. And when I woke up the next morning, that video had gone viral. And so I was like, wow, okay. I gained thousands of followers overnight. Then, I started posting videos on TikTok. I started going live and answering questions live. And the idea was really to educate people who don't know about it, to help end the stigma of living life that way, and then also hopefully find people who either were already living with one and not enjoying it so much, or may have to face that reality and were scared.
(09:21):
I think for a while, I was able to do that successfully. It was a lot of fun and fulfilling, and it gave me a different sense of confidence, even in myself. I even became more comfortable with my ostomy and more loud and proud about it and what I had been through medically than I even had before. Because you are connecting with strangers, you're getting validation from people who are just genuinely curious. They have no need to ever need an ostomy, and they just want to know about it. And so I think, I guess a lot of the reaction and support that I got from both people who just generally wanted to educate themselves and then people who were going through it as well was just overwhelming and such an amazing, beautiful thing to do that I kept going for as long as it made sense to do that.
Speaker 1 (10:16):
Yeah. Did it help you get out of your own self and really think about how you can reach out and help other people? That kind of helped you push forward, didn't it?
Speaker 2 (10:35):
Yeah, it does. So it's just one of those things where it's like, I can preach to myself about how I want to be positive and live this life, and I want to do this. But then, when you get almost on a stage and connect to other people, there's also this sense that I'm actually living out the things that I'm saying I want to do and the things that I'm saying I want to be. Not only am I living that out, but I'm also finding people who, there are a few of them that we have each other's personal numbers to this day, and we still talk now and then. Now I don't post as much, but if I do, I have those few people who will leave a comment and say, you totally changed my life, or You totally saved me when I was going through this.
(11:21):
I still get notifications where another person has posted that they're going through this, and someone put in the comments, you should check out this person's page. She has a lot of really good stuff from a couple of years ago, but she's a great person to go and look at her videos about. And so when I see that, I'm always like, okay, I was fulfilling the purpose that I genuinely felt called to do at that time. And there's a reason that I uploaded the video and it went viral overnight, and then it was effortless to the amount of people I was reaching. I would go live and have thousands of people in my life at a time watching me, asking me questions. I would have thousands of views on these videos, and I didn't have to do anything. It was just me being myself and talking about my life. So, because that was so effortless and real, I knew it was the right place and time to be doing that. And it felt good for me, and I know it felt good for many other people, too.
Speaker 1 (12:21):
And then you went through this transition?
Speaker 2 (12:23):
Yeah, I did.
Speaker 1 (12:23):
Tell us a little bit about your transition as you matured and grew in this.
Speaker 2 (12:28):
Yeah. So all of this was going on between the ages of 27 and 29, and then when I was posting and doing all of this and was so active, I wasn't working. And so I had time to make this my full-time job, but it never felt like work. Then, some life changes happened, and I went back to work full time. I moved, and I just had so much going on in my personal life that it was almost impossible for me to have the mental capacity to get online and try to show up for other people. I couldn't show up for myself at the time. So I hit rock bottom first. And then over the last few years, as I've gone through that transition of hitting a low point and climbing back up to a higher point, my intention was always to go back to it.
(13:22):
And then, when I've tried as I've gotten older, I'm in my thirties now, it doesn't feel as authentic or as easy as it was then. And then I had to sit and be like, well, why? I'm not a different person. I went through some things, and I'm getting older, but I still want to talk to people about this. I still want people to know that I'm here to help them. But I've spent the last year just sitting with myself and picking apart all the things that have happened over the years, re-experiencing them, and better understanding what's happened. And then I have gotten to this place where I realized that, for a time, being so focused on my Crohn's and my ostomy was important for me. It was almost necessary in the aspect of healing and coping with it.
(14:21):
And then now I'm in a place where I've realized it's not the center of my life for a long time, that was almost my identity. I'm the sick girl. I'm the girl who could get sick anytime, and I might have to do this, or I'm the girl who went through surgery. I'm the girl on TikTok, showing people it's okay. And all of that I am, but I'm also so much more. And realizing that I've decentralized my focus on my health and ostomy so much from my life is, in a way, a beautiful thing. Now. It's like I'm so happy to talk to anyone about it, but I also love to explore all the other aspects of me that are not surrounded or centered around something so difficult. And I think that that transition and that kind of shift has just been really beautiful because it's nice that in time, something that's so important and holds so much gravity to what your day-to-day looks like, kind of just one day. And if you can get there and you can do the work to find yourself in that place, that's when I really think that you're starting to live past.
(15:35):
That resilience, past that initial, I have to mentally decide to be positive about this every day, to just wake up and live every day now. And that's important. That should always be the goal, I think.
Speaker 1 (15:51):
Yeah. I mean, I agree because I know I had mine reversed. My colostomy was reversed, and so now I have my stomach, and it's not like it was before the surgery and everything, but when I appreciate what I have and I call her her, I thank her for working like she does and blessing me with that, then I feel better. I feel so good and confident, you don't worry about it, and you're just thankful for what you have and move forward well. So I mean, with all of that being said, you're at a really good place in your life now.
Speaker 2 (16:38):
Yeah.
Speaker 1 (16:38):
Right. And do you have any last words you'd like to share with the listeners?
Speaker 2 (16:45):
Yeah. I think no matter what you're going through, whether it's health, if it's affecting your physical body, if it's affecting your mental, spiritual self, you always have a choice. And it's always up to you to decide how it will define you in any given moment that you're in. And so just remembering that you are actively always making a choice to get through it and be positive with yourself while also giving yourself grace and space, giving yourself the grace and space also to feel what you're feeling is super important. Sometimes it's just such a habit that we feel icky or sad or upset, and you just don't want to feel that. So you brush it off and stay busy, or focus on the next thing. And that's important and serves its purpose sometimes, but it's also okay to have your moment in the mirror, with yourself, in the car, or in bed where you're like, I don't love this.
(17:56):
This isn't what I would've chosen, or I would've picked, or what I would've expected. Have that moment, but then also think about all the great things, like you said, you still get to do, or the options that you still have. And if you let those sad, tough moments flow through you because it's just energy, you'll find that once they flow through, you can pull yourself back up, get into more of that positive space, and be more present. Then you pick something that day to focus on and that you're going to do to enjoy just for yourself. And then remember that your body does so much for you every given day that even when it's going through something so hard, if you're waking up every day and still here, your body is serving you.
Speaker 1 (18:52):
That was so nicely said, Sarah. That's great. I appreciate you sharing your story. It's not always easy to tell, but thank you so much for spending time with me. This was good. I love it. Yeah, it was good. So thank you all, and we sincerely know that this will touch someone's life.
Speaker 2 (19:10):
Yeah.
