"My advice for girls today is to never take anything for granted, life especially. Don't let anyone control you or make you feel less of a person because you are worth so much. Always know how beautiful you are, disability or not. And never spend too much time looking in the mirror picking at every flaw you think you see... make sure to smile & laugh at least once a day & just never give up. No matter what you're going through, YOU CAN MAKE IT THROUGH. YOU ARE STRONG. YOU ARE A CHAMPION."
Imagine going from living a "normal life" of running with your friends and working two full time jobs, to losing feeling below your belly button, losing the ability to walk and having to change your entire life. Most people wouldn't know what to do and would feel sad and angry. Not Jojo Sims. When this happened to her, due to a rare condition, she found that she would make the best of it and stay positive throughout the entire situation and inspire those around her. We are so impressed by your strength and ability to overcome these obstacles with a big smile on your face. We cannot wait to follow your journey to watch you continue to tackle the world. We're going to borrow your own words for a second, Jojo, because YOU are a CHAMPION!
Every Ella: Tell us a bit about yourself.
My name is Samantha Joann but I've gone by Jojo my entire life! I'm 22 years old & I'm from Shreveport, La. I graduated high school in 2013 & went straight into working a full time job. I was a certified dental assistant but I was also a nanny. Working 5am- 5pm was pretty much my everyday schedule. I would get off work & go straight to the gym or go home to run around the neighborhood. I live with my amazing boyfriend & our pit bull, Søren.
In December 2015, an event changed your life forever. Can you tell us about what happened?
I have a brain aneurysm & last year in December my doctors were worried it had ruptured or I had meningitis. We did a spinal tap that came back good & didn't show any signs of a brain bleed or meningitis. I got a spinal tap headache because the tiny hole was leaking spinal fluid so they did a procedure called a "Blood Patch"... This procedure was something I had never had done before so being scared was an understatement. I had no idea my life would change because of it. They took a tube of blood from my arm & injected it into my spine.. this was supposed to block the spinal tap hole & stop spinal fluid from leaking. Something went terribly wrong & what the dr injected ended up making a cyst form around my spinal cord. I lost feeling from the belly button down & lost the ability to walk along with many other things. My bowels & bladder have been majorly affected, my strength is very poor (I can lift about 10-12 pounds now) but no matter what, none of this will bring me down. I'll never stop fighting to walk again!
What is Cauda Equina Syndrome?
Cauda Equina Syndrome is very very rare. "Cauda Equina" literally means horses tail. So basically all my spinal cord nerves (the horses tail) are under extreme pressure & they are super inflamed. This affects several different things because my brain can't send signals to places it needs to talk too.
Is there treatment for this condition?
Sadly there is no cure for any spinal cord injury BUT there is treatment to help regain some lost abilities. I go to therapy 4x a week & work my butt off during every single session. Every spinal cord injury is different, so therapy is different for every patient.
What has been the hardest part of this for you?
That's a pretty tough question to answer. I have a huge heart... & I care so much about others & what they feel or what they think. I think the hardest part is knowing that so many lives have changed because of this crazy thing that happened to me. My mom lost her job, my dad is our only income & my boyfriend lost his girlfriend that could do any & everything for him without any problems. I know that none of them blame me but I can't help but feel guilty. They love me so much & I can't even begin to tell you how much I appreciate EVERY little thing they have done for me. So the hardest part for me is knowing that so much changed for so many people & there's nothing I can do to fix it.
You’ve said there is a lot of misunderstanding of what a spinal cord injury actually is. Can you tell us and our readers what exactly it means?
Yeah! So there are SOOOO many different types of spinal cord injuries & there are so many different ways that each one can affect a person. What I meant by saying people misunderstand it is that when people see someone in a wheelchair, they might think," oh she just can't walk" but there's so much more to it. I personally have to deal with nerve damage in my bladder & bowels.... so in order for me to use the bathroom.. I have to self cath. I'm not ashamed of it by any means! But I have people all the time say things like "you don't look sick" or "you don't look like anything is wrong" but they have no idea what I & so many others who have a spinal cord injury deal with behind closed doors. Just a few problems that go along with SCI is weakness in upper & lower body, dulled sensation, sharp nerve pains that will come at random times & can bring you to tears & breathing problems! I just hope that I can help bring awareness to SCI & everything that goes along with it.
You have stayed so positive during this entire chapter of your life. Can you tell us what keeps you so positive and strong?
God. Family. Friends. My support system is the reason I am so strong. They help me realize that giving up isn't an option. If I were negative, it would only make this probably 100x harder. Also, everyone I have met who has a similar story or is very sick, helps me stay strong! I want to fight for those who can't.
What are your dreams and ambitions for the future?
My dream is to marry my boyfriend & have the life we always wanted. I want to have kids & be the fun- loving person I have always been. I want to inspire others & help anyone in need. I know this happened for a reason & I feel like I've already helped so many people struggling. It makes me want to help soooo many more. I would love to travel.. which is something I didn't really think about before this. But now.. I want so bad to just see so many beautiful places.
Name one woman who inspires you.
My mom is my biggest inspiration. I could name so many other amazing ladies who have truly been so inspiring to me but my mom trumps them all. She didn't just lose her job.. she lost a work family. She lost time away from home that allowed her to just get away sometimes. My mom spends every single day with me.. taking care of me, driving me to therapy, driving me to doctors appointments, taking me to meet friends, cooking soup for me when I'm not feeling okay, encouraging me when I feel like I'm doing terrible at therapy, cheering me on no matter how sloppy I look doing my exercises & just being my mom. But she's also not just my mom. She's my absolute bestfriend. I can tell her anything & never feel like she's judging me. I know that all my secrets are safe with her & I know that she will never give up on me. She truly is an amazing person who you look at & would never guess the past she had. She went through heck & back. But when you look at her today you would NEVER guess it. She's the strongest person I know!
What are you currently reading/watching?
Criminal minds... it's my addiction
If you could have dinner with one female celebrity, who would it be and why?
Sarah Herron without a doubt. She's someone I look up to on a daily basis. She grew up with a "disability" but she has never let it define her or hold her back. I admire everything about her.
What advice do you have for girls today?
My advice for girls today is to never take anything for granted, life especially. Don't let anyone control you or make you feel less of a person because you are worth so much. Always know how beautiful you are, disability or not. And never spend too much time looking in the mirror picking at every flaw you think you see... make sure to smile & laugh at least once a day & just never give up. No matter what you're going through, YOU CAN MAKE IT THROUGH. YOU ARE STRONG. YOU ARE A CHAMPION.