Bailey’s Mum, Tracie, has been following the Ichthyosis Awareness Month blog project. We didn’t know eachother until May 2013. I noticed that Bailey was sharing her story about living with Ichthyosis on Facebook, and upon reading it, I asked Tracie if I could share it here. It was too powerful not to share. Bailey has been through some incredibly difficult times being isolated at primary school. But her journey to self confidence through her family, friends, education network, her faith and on the stage is a beautiful one. Bailey’s story shows that it really does take a village. Thanks for your story Bailey, you’ve won a gold star for the longest post of the project!
“I have a rare skin disorder called Lamellar Ichthyosis and May is the awareness month for it. I thought I’d share my story in three parts: the beginning, the younger years, and today. So let’s start at the very beginning, a very good place to start…
Sunday, June 15, 1986.
Three weeks early.
My Mom goes into labor after her brother convinced her to dance at a wedding reception.
(Maybe that’s where my love of dance comes from!)
On the way to the hospital my Mom had a feeling something was going to be wrong with me. My Gramma thought she was saying that because she watched a tv show that week where one of the characters had a baby with something wrong. Looking back now, my Mom sees it as God preparing her.
At 1:37 in the afternoon on Father’s Day, little Bailey Rae Jones came into the world at 6 pounds and 6 1/2 ounces, 19 inches long. My Mom knew from Gramma’s face that something was wrong. The doctor looked in a medical journal and found out I had ichthyosis. At 20 minutes old, I was life-flighted to the Dubois NICU. My Mom only got to stick her finger in the incubator before they flew me out. In Dubois the doctor confirmed that I had ichthyosis. I was born with a collodion membrane which was an extra layer of skin with fluid underneath. My Gramma always told me I looked like a little sausage! haha My Mom finally got to hold me when I was two days old. My Gramma had to wait until I was discharged from the hospital at two weeks old!
I came home to my Papa, my godparents, and my dog. Everyone’s life as they knew it was going to change.
Lamellar Ichthyosis is a rare skin disorder that affects one in 200,000 people. It is one of the more common types of ichthyosis (there are at least 27 others). It is caused by a recessive gene carried by both parents. My body’s manufacturing of skin cells is off which causes the build up of scales all over my body.
Here are some physical facts about my skin disorder:
I have scales that cover my entire body.
I cannot sweat or rather cannot sweat very well. The scales block my sweat glands.
I cannot sweat so overheating is a very real problem for me. A fever is life-threatening.
I have ectropion which is the skin around my eyes being so tight it causes my eyelids to turn inside out.
I cannot close my eyes all the way because of the ectropion. It’s the thing I’m most self-conscious about.
I have never been bit my a mosquito. They can’t get through my skin.
I have bald spots on my head because of the scales.
I have dry eyes and must use ointment and eye drops each day.
I had to have ear surgery once. Couldn’t hear a clock tick because the scales built up badly in my ears.
I heal very quickly though I am very susceptible to infections.
I don’t have to shave very often because the scales prevent my hair from growing too fast.
I don’t have natural oils in my skin so it took me years to be able to do a thing as simple as turning a doorknob.
I have dry skin which cracks. Sometimes these cracks are 1/4 inch deep.
I have to put lotion on throughout the day.
I have a very high metabolism since my body is constantly working at growing new skin cells.
I usually have to shower to keep my skin moist longer.
I shed a lot of skin every day. We call it “angel dust”.
There is no cure.
Here are some physical facts about other types of ichthyosis:
Some are much better than mine. They aren’t as noticeable because it only appears on parts of their body.
Some are far worse than mine. Their skin blisters and tears at the slightest touch. They must be wrapped in bandages all the time.
Some have such tight skin that it makes it hard to walk or deforms fingers and toes.
Some have very little hair because of the scaling.
Some have poorly developed bones and have problems with their internal organs.
Some have extremely red skin.
Some have problems with teeth, nails, poor vision.
Some have difficulty growing because of their high calorie intake needed daily to keep up with the work their body is doing.
Some types aren’t expected to live longer than a few days.
But far worse than any physical implications is the emotional turmoil you face every day. Here’s my story:
Growing up with a skin disorder was not easy. In preschool, kids were hesitant to be my friend. In Kindergarten, parents called our principal asking to take their kids out of my class. People wouldn’t touch things I touched. I was called “Scaly Bailey”. Everywhere I went I was stared at like I was some sort of crazy creature at a Circus Side Show. Growing up in a small town helped because once we started teaching people about my skin most became supportive and word quickly spread. I finally had a girl step up and become my friend…others quickly followed her lead. I became one of the coolest kids in 2nd grade when I had a Cool-Suit Vest to keep my body temperature cool during recess and gym. But it was still difficult. I knew from a very young age that I was different. The older I got I began to notice advertisements in the media for smooth skin. It made me upset because I would never have that. It even bothered me that I couldn’t catch a guy’s attention…but why would I with the skin I was in? My Mom & Gramma always told me that God doesn’t make mistakes, that He loves me just the way I am but I didn’t believe them. I prayed for my skin to be healed but every day I woke up still trapped in these scales. I didn’t want to be different. I didn’t choose to be different. I became extremely insecure and shy. I felt worthless and ugly. My favorite movie was Beauty & the Beast (and still is) because I can relate so much to the Beast and what he was going through.
One day in Sunday School, my teacher told us that Jesus wanted to be our friend. I remember going home that night, lying in my bed and thinking that over. It wasn’t easy for me to make friends. But what if it was true? What if Jesus, the King of all the universe, really did want to be my friend? That night I asked Jesus into my life. I finally chose for myself to begin to believe all that He says about me. “You are God’s masterpiece.” (Eph. 2:10) “Man looks at the outward appearance but the Lord looks at the heart.” (1 Sam. 16:7) “You created my inmost being. You knit me together in my mother’s womb.” (Psa. 139:13) “The King is captivated by your beauty.” (Psa. 45:11) It was after I started to believe these things that I gained confidence with the skin I’m in. Sure, I still have days where I can be insecure. I still have days where I hate my skin. I still have days where I wonder what it would be like to roll out of bed, throw on some clothes and leave for the day without having to go through the whole lotion bit. But I’ve come to realize that every morning when I wake up, it’s a choice I have to make. Will I believe what the media and people around me say about beauty? Or will I believe what God says about beauty?
I want to leave you with my life verse:
“I praise you because I am fearfully and wonderfully made. Your works are wonderful. I know that full well.”
I don’t even know where to begin this one.
“‘Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You’re near?
What if trials of this life are Your mercies in disguise?
We doubt Your goodness. We doubt Your love
As if every promise from Your Word is not enough.
What if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise?”
This seems to sum it up for me. What started out as the greatest challenge my family would face became one of the greatest blessings! So today, I want to share the blessings, my blessings from living with ichthyosis.
This is where it all starts. This is where your life lessons are learned. This is where your support system comes from. And I truly could not have asked for a better family. From my Mom who never treated me like I was different from other kids to my grandparents who raised me so my Mom could finish college. To my aunt and uncles who helped with multiple baths a day, putting lotion on, picking loose scales and cooling me down when I was overheated. To my cousins who have loved me from the start. To my stepdad who has always loved me like his own. To my step family who welcomed me with open arms. To my cousin Caitlin (my “sister by heart” – pictured below) who always wanted to be around me and was such a close friend in my most fragile years. Without my family, I would not be the confident woman I am today. They started the path I’m on. I know they have my back. I know they support me. I know they love me, skin and all. Without them, the rest of these blessings might have never come.
Sometimes living in a small town can be a curse, sometimes it can be a blessing. The older I get the more blessings I see. The biggest being the overwhelming support I’ve received from most people in this town. People know me. Maybe to start out it was because of my skin. But today they know me as “so-and-so’s relative” or “the dancer” or “the musician” or “the one who is always in the newspapers.” They don’t see my skin anymore. They have rallied behind me so many times throughout my life. When I was only a year old, a local man created a movie about me and my ichthyosis and aired it on the local television networks! My pre-school teacher, was an incredible first influence outside of my family. My elementary school principal, refused to let parents sway him to take me out of their kids’ classes. I wouldn’t change where I grew up for anything. It has shaped me in so many ways.
Everyone has friends. Some have many. Some only have a few very close friends. One thing I’ve learned with ichthyosis is that it can be challenging to make friends but when you do they are so valuable because they see you for who you are, not what you look like. I am forever grateful to Julie, my first friend who I am still close to today. Her bravery in stepping forward to befriend me showed other kids that they could do the same. And honestly, I don’t think she ever cared that I was different or if she really even noticed too much. And God has continued to give me amazing friendships throughout my life.
Maybe it’s because of my own insecurities that I was searching for a place where I could belong. I found it onstage. There I could be myself. People saw me for my talent rather than my skin. And I’ve seen this as a reality in many others with ichthyosis. Music, theatre and dancing have given me confidence in myself and in my body. And some of the most influential people in my life were found in these worlds. April taught me not only dance but how to challenge myself and how to become a good role model. My dance family has loved me every step along the way and made me feel cherished. And every year this family grows. And their support by being involved in so many benefit concerts for ichthyosis have meant the world to me. My students have challenged me to be a better person and to share my story with them. I was given a home in theatre and encouraged me to never give up my dreams. All of these people have showed me which path I want to take in life. And the stage is where I learned to shine!
The First Baptist Church is the first place that I can recall walking into and not being stared at. It’s where I found Jesus. It’s where I learned what God has to say about my beauty. It has given me an extended family. I know these people will always be there for me no matter where I am.
College was a new experience for me like it is for so many others. I had the usual fears on top of whether or not people would accept me because of my skin. In a way, it was kind of like starting all over again. But once again people welcomed me. President Black who not only helped carry my stuff into my dorm that first day but was crucial in making arrangements for things I needed. I had mother away from home, and also a spiritual father figure in my life and was there for me through many trying times. The entire music department who believed in me. At college, I grew a lot as a person and became ever more confident in the person God meant for me to be.
I don’t know of a single college student who isn’t worried about who their roommate is going to be! It is probably the singlemost biggest fear we have but God blessed me beyond belief with Natalie! She lived with me for four years, we’re the best of friends, her family has welcomed me as one of their own, and I was her maid of honor at her wedding. She wasn’t grossed out that my skin shed or that my eyes don’t close all the way when I sleep. She was there as a shoulder to cry on when people were rude about my skin. She didn’t mind that it sometimes took me longer to get ready because of showering and having to put on lotion. Sometimes she would even put lotion on my back since it’s hard for me to reach. I truly don’t know what I would do without her! She has become my sister, my absolute best friend.
I know I’ve always struggled with the question, “who will love me as I am?” When a guy could have any girl he wanted, why would he pick someone with a skin disorder? Well, my life was forever changed when I met Elijah. He was the first man to ever admit he liked me as more than a friend. He was my first boyfriend, my first kiss. I still remember the night he told me he liked me. He grabbed my hand and told me I was beautiful. It was all I could do to hold back the tears. Those were words I always wanted to hear from a guy but was afraid I never would. He treated me like a princess. He told me he loved my skin, loved that I was different. We had a wonderful relationship we had. Even though we are no longer together, I still think the world of him. He showed me that a great and godly man could love me and find me attractive. And I know he changed my life forever by loving me.
I think one of the biggest blessings in having ichthyosis is the “moments”. Things that are a regular occurrence in everyone’s life but are a bigger deal when you grow up with an obvious physical disability. Or things that might not be a normal occurrence in one’s life, but is made even sweeter because of the fact you are different. My first friend. My first close guy friend. My first prom date. Winning Homecoming Queen, when my entire town and the opposing team cheered. My first college roommate. My first love, my first boyfriend, my first kiss.
Having ichthyosis has given me so many cool experiences! I’ve met the most amazing people at the National Conferences with F.I.R.S.T. People who understand exactly what I’m going through. I had a great penpal in Laura Ashton as a young child…my first friend with ichthyosis. I’ve attended Camp Horizon, a camp for kids with skin disorders. I’ve been featured in Ladies Home Journal. I’ve been part of a DVD that F.I.R.S.T. made for teens with ichthyosis. In a modeling contest, I was able to share my story with hundreds of people. I got a chance to Make-A-Wish and through that was able to dance on Broadway through private lessons with the dance captain of Beauty & the Beast (Remember, my favorite movie of all time? It couldn’t have been more perfect!) I’ve had three dance students with different skin conditions that I’ve been able to inspire. And through my Princess Tea ministry, I’ve been able to teach young girls the truth about beauty…that God finds them beautiful just the way they are. And at the last national conference, I began to realize the countless lives I’ve inspired. None of this is of my own doing. I’m just being who God created me to be.
I know that I would not be the kindhearted, compassionate soul I am today without my skin disorder. It doesn’t define who I am, but it has shaped me in so many ways. I have such a heart for orphans, for those who are on the outside looking in, for the bullied, for the poor. I know what it’s like to be different and how lonely that can be. I want to reach out and befriend those people, like Julie did for me so many years ago. Here are my friends with Ichthyosis.
In the end, after years of praying, I still have ichthyosis. But I am healed. No, not physically but emotionally which is far better I think. I went from that shy insecure little girl to a confident young woman. I wouldn’t change any of my experiences because it has brought me to where I am. God is gracious and has used all my hardships as lessons to point me in the right direction. And He continually gives me opportunities to share my story, to be a blessing to others. I am completely content in my skin. Most days I forget I even have ichthyosis.
I am so very blessed to be different.
For Ichthyosis and appearance diversity resources, click here.