This Woman Is Living Life to the Fullest With Cystic Fibrosis

by November 6, 2015
filed under Life

FullSizeRender (35)Bailey Anne Vincent is the founder of Makeover Momma, but you might know her best from her powerful writings at xoJane or her empowering photos from Salty Girls aimed towards promoting awareness of Cystic Fibrosis. The writer, vlogger, dancer and mom battles consistent infections, hospital visits and surgeries, but it’s her ambitious work schedule and positive vibes that overshadow all of that. Watching her daily vlogs or reading her regular articles makes you feel like when she says something you’re getting life advice from a dear old friend. We spoke to Bailey over email to get to know her better and pass on some of that life advice.

1. Describe a day in the life of Bailey Anne Vincent.
In an ideal world I would sleep in, because my lungs are the worst in the morning – but I’m normally woken up bright and early by my two little girls. If it’s a school day, we rush off. My youngest goes to the deaf school where I actually met my now husband (we both worked there) – although she’s only hard of hearing. I used to homeschool them – which I miss enormously – but with medical needs, going to school this year made the most sense. If it’s a good day, I’ll do all of my treatments: Nebulized medications four times a day, a surplus of pills, nutrients in my feeding tube and chest clearance techniques. I normally have a few doctors appointments every week, and I also work as a freelance writer. As editor of Makeover and a daily vlogger, there’s always some sort of writing, promotion or social media work to be done. At the moment, I’m fortunate to work part-time as a dance teacher and choreographer, which is the thing that fuels my soul… But sometimes gets me home super late. I’m definitely a night owl and have a hard time sleeping, so I wish I crashed out, but I’m normally up longer than I should be. Writing ideas and pages for my novels always hit me in the middle of the night, ever since I was a kid… It’s so annoying!

2. Can you tell me a bit about what it’s like to live with Cystic Fibrosis?
Although my genetics aren’t typical, my symptoms, organs and daily routine is super super CF cliche. Everyday is completely different, depending on what type of infection my body is battling… Which is normally more than one. In the last year, I’ve had some sort of surgery or procedure that requires intubation at least once a month, so I feel like I’m always recovering from something. I tend to be a stubborn jerk to be honest. I’m known for getting unplugged from IV antibiotics from my portacath and then going to dance an hour later. I don’t like to take a lot of recoup time, because being a mother is my first priority and we rarely have that luxury. Some days my oxygen is terrible and I require portable 02, while other days I can tolerate low oxygen more easily and skip it. Sometimes I can eat food – at the moment, only soft items – and feel decent, while a week later I can swell up like a pregnant woman and have to switch to liquid feeds. It’s definitely like a box of chocolate, this life!

“Most of my accomplishments were because I pretended I believed in myself or imagined I was a person who wasn’t scared”

3. You come across as a very positive, lighthearted person, which can be hard to do even in perfect health. Have you always been this way and what drives this side of you?
Thank you! I’m definitely not always a positive person, but I tend to be sort of private with the bad moments… lots of secret crying in the bathroom, if you will. I also take insane pleasure in tiny stupid things: Peppermint coffee creamer… Chocolate… A dishy TV show… A new lip gloss. Sounds shallow and asinine, but focusing on the little stuff helps counter that Americana-bread sense of being a slighted when your life is harder than others. We’re always told that we should want something bigger and better at all times… But I’ve always been rather happy with the opposite. I love purging my house and getting rid of junk I don’t need, or having less but loving more.

I have to be strong for my kiddos though. I became a mother unexpectedly at a young age – I was only 18 – so I grew up instantaneously. I know many people who don’t do this after becoming a parent, but I never had the crazy college days or ‘freedom’ in the traditional sense, and I wouldn’t change it for the world. I’ve always done things a bit early without meaning too… I was a paid staff writer for a newspaper by 14, a traditional college student who commuted at 16, and so on. I think the trick to keeping your drive is honestly to not think about what ‘should’ be done. My family has always called me Bee like a bumblebee because I buzz my way into jobs that don’t exist or situations with which I’m not comfortable. The bumblebee doesn’t know it’s too big to fly, and I think just doing something – even if you’re totally bluffing – isn’t always a bad thing. Most of my accomplishments were because I pretended I believed in myself or imagined I was a person who wasn’t scared, and then the rest sort of falls into place with hard work and gumption. You make tons of mistakes that way, but life is about making mistakes. Most of my mistakes are the only reason I appreciate what I have now.

4. With your long list of entrepreneurial feats, what are you currently working on accomplishing these days?
I just finished my most recent fiction novel – which will be part of a series – and I’m debating on whether to self publish again, or explore a more traditional route. The publishing industry is definitely a different realm than it used to be, and finding an agent feels impossible. It’s a Young Adult novel that takes place in the future but has true historical roots, and the main character is a girl suffering from a CF-like disease. I wanted to play around with the idea of making her weakness actually be her strength, and give my daughters a true underdog as a literary role-model.

I hope to keep writing for xoJane and my own website, and of course continue with my daily vlog as long as they’re helpful to others. My best friend and I want to start choreographing for the camera in addition to the stage – so we can publish some of our dances via the digital platform, as well.

5. What advice do you have for young people who are overcoming their own struggles to accomplish their dreams?
I’m going to steal from Nike here and say: Just do it. If you want to write a novel, don’t worry about the plot or the idea… Just sit down and write. Even if it’s awful, you’ll be getting ideas on to paper and starting the process. If the job you want doesn’t exist, create it. If you have no idea what you’re talking about, believe you do and then put in the work to make sure you actually do. We live in a culture that’s enormously focused on pieces of paper: Certificates, degrees, resumes… And they’re important. But so much of the battle is just getting out there and doing it… Create the experience, teach yourself, work super-stinking hard.

6. Is there anything else you’d like to say?
The best part about writing and vlogging, for me, is meeting so many others in similar situations. I love connecting with anyone out there who feels alone, or needs a friend or feels misunderstood… Because I’ve been there, and still feel like that 95% of the time. So if anyone out there relates to the vlog or just needs someone to connect with, please don’t hesitate to comment, email or track me down on social media. Every time I consider quitting, that’s ultimately why I press on. Like Frida Kahlo said, sometimes we feel like the strangest person in the world, until we realize there is someone out there exactly as strange as us.

Find Bailey on Twitter @makeovermomma

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