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Emily's Story: Living With Neurofibromatosis and How She Overcame Her Adversity. Life Lessons She Learned, Challenges She Faced, And How ANYONE Can Overcome a Disability.

Only one in eight children with curly hair

My name is Emily Medlock and I’m here to tell you my story, a story that I hope will inspire or motivate at least one person out there. If I can do that, everything I’ve ever went through in my life would all be worth it.

What is Neurofibromatosis?

To start off, let me explain Neurofibromatosis. It is also known as Von Recklinghausen’s disease, however for simplicity’s sake, I will call it by its most common name: NF1. NF1 is a genetic disorder which affects different systems in the body, but it primarily attacks the nervous system.

Characteristics of the disease include:

-Spots known as café-au-lait and an abundance of freckles covering the body

-Benign (harmless) growths on the iris

-Abnormalities of the skeleton

-Larger than average head size

-Learning disabilities

-Mental disorders

More serious effects are tumors which can form in many ways:

-Tumors of the nerves beneath the skin

-Tumors that form on the optic pathway (the nerve path that connects the brain and the eye)

-Cancerous tumors on nerves

-Tumors on muscles

-Tumors on the glands above the kidneys

-Increased risk of leukemia

-Increased risk of breast cancer

There have also been many patients with NF1-induced:

-Scoliosis

-High blood pressure

-Seizures

-Strokes

The chances of being born with NF1 are one in 3000 and it is generally hereditary. In my case, it was caused by a genetic mutation, which meant I have no family history of NF1 whatsoever. Ironically, NF1 the disease is a shortage of nf1 the cell, that everyone possesses, which acts as a tumor suppressor. People that have NF1 have a malfunctioning nf1 cell.

For the longest time, it was believed that an infamous man that many of you have heard of had this disease. It was only very recently that it turned out to be an incorrect diagnosis. Even so, it still gives you a picture of what the disease may look like. The man’s name was Joseph Carey Merrick. Do you recognize him by his given name? That just goes to show you how cruel the world can be when you only recognize him by his peer-given name, The Elephant Man. Yes, the Elephant Man was once believed to have NF1. He was known for being the ugliest man in the world.  In fact, adding his picture would likely be called too graphic.

How did it affect me growing up?

Now that you have the rundown for Neurofibromatosis Type 1, let me tell you about my personal story with it. In 1993, I was born to parents who eventually went on to have eight children, with me sixth in line. Let me just say that my siblings are all very beautiful and talented individuals—for the most part, of course. (Hey, they’re still my siblings. I can’t let the opening pass.) When I was born, it appeared that I was just a normal baby. But at a couple of months old, I started getting little spots on my body. My mom took me to the doctor and he diagnosed me with NF1. He told her to take me to a dermatologist and she was devastated when she learned of the effects listed above. They told her that I would be mentally-ill, lame, blind, and wouldn’t live to be an adolescent. She couldn’t take it; yet, she had to. But, what Mom didn’t realize was that those doctors didn’t know my God, and the miracles he performed.

When I was about three, I was entered into a study group where a very reputable doctor monitored me. Here my mom learned that I had plexiform tumors. These tumors reside and grow under the skin. After receiving my first MRI—my first of many—they told us that hundreds of tumors grew throughout my body, wrapping around my organs. Also, that there was a worrisome one on my third vertebra on my spine that was pulling the vertebra out of alignment.

To everyone’s surprise, this never escalated past early childhood and neither did my scoliosis. I had bad headaches at the time, which was said to have been caused by this, but later found out they were simply migraines. In fact, hardly any of my symptoms or difficulties escalated past adolescence. But at the time, it was hard to see this as a possibility. For this reason, the doctor personally called my mom, giving my fate and strongly advising she didn’t have any more kids.  She went on to have two more healthy babies.
Emily mom and nephew

Yes, I grew up different. I was not allowed to do a lot of things that normal kids get to do, such as strenuous physical activities that could jar my neck. But, my siblings were great; they treated me just as awful as everyone else—kidding,

they really were great. But my mom—she was perfect. She home-schooled all eight of us. She made me feel like everyone else—except for some extra protection and worry. That’s how she shows us she cares; she worries. She watched me grow up, took me to doctor’s appointments, and taught me everything I know. She watched my every birthday, wondering if it would be my last. She prayed every day and night for my health and safety. It looked like it worked, because I grew up with straight A’s—I know, home-schooled—to find a career that I love, to meet an amazing man, and to give, care, and live my life for God. I was a happy child.

As I grew older, I cried, begged, and prayed every night that God would take away my NF1. If he did this, I would never want anything else again. What an awful thing to do—to give up the power of prayer for my outward appearance. But now, as I realize what matters, I pray for the health and happiness of loved ones. Who knew that insecurities could make one so selfish?

Distinct Memories

There are many instances where I felt extremely judged by others for my deformities. There were many times where the world tried to define me simply by my disease.

Aside from all of the stares, cringes, and blatant questions, I had more specific occurrences too. The mall; I hated the mall. You pass by so many people with their eyes scanning you until they land on your worst feature.

One time, I was told that I wasn’t allowed in Walmart because a door greeter thought I had the mumps, or something worse, and she didn’t want me to spread it. She wouldn’t let us pass the threshold. My sister and I waited with her while my mom got the manager, who made the employee apologize.

I was playing a game of Pictionary with friends and the word-giver gave me the word mumps and I felt it was very pointed. I didn’t know what the mumps even were, so I asked her. She said that it was a disease that made bumps on your neck. In front of this group of teenagers, I nearly cried. I knew everyone was either laughing inside or simply felt sorry for me as I scribbled down the picture and took my seat.

When I was little, all I ever wanted to be was a mom. So, I remember when the doctor told me it was not recommended, the child would have a good chance inheriting NF1, and I would never, EVER do that to a child. It was devastating, but I soon found a solution.

To mention a better memory, I remember the day my older sister by three years, Sarah, helped me fix my hair to cover my neck. I had always had my hair up. I never knew any different. On this day, we were taking photos, and I knew that me, and everyone else, would only see my neck and my tumors. Seeing my distress, my sister strategically placed my part and let my hair down, boosting my confidence tenfold.

me and my sister

I picked my clothes, hair, jobs, activities, and everything else, based on one silly disease. When I started judging myself, I started judging other people. You know those girls who believe it is of utmost importance to keep their make-up, clothes, hair, and body perfect at all times? It’s hard for them not to hold others to their standards. It only makes sense. When you care about the outside, when you are insecure, you will automatically judge others because that’s what you put your stock in. If you are looking at someone, and feel bad about yourself simply because of outer beauty, then you will do the opposite; you will judge others on their appearance whether you know you are doing so or not. I always felt I could sense the judgment of others, but in truth, it was my own judgment I was sensing; I just used their eyes.

Part Of My Immediate Family

Overcoming My Disease

It took about twenty years for me to see the truth. I had fought NF1 my whole life. I had let this disease  define me, not the world. It was me. It took me a long time to realize that the world has no power over  who I am; only I do. When I realized this, it opened a whole new world for me. I was able to accept myself as I was, from the inside out. To make things worse while growing up, I had always been rather odd. I come from a small community in the Midwest where, to be acceptable, a girl must love hunting and shopping. That’s great, but I always preferred video games and anime and everything nerd. When I was a kid, that’s what I did. I loved dolls and Barbies, but I also loved the other stuff.

As I got older, I put away dolls, and for a while, I put away my other interests. It seemed childish and slightly unacceptable. Believe me, I didn’t want more adversity in my life. If I could fix everything else in my life to fit in, maybe I could be accepted, and no one would notice the elephant in the room—pun intended. So, I tried staying in shape, searching for careers, watching the world, and fitting in, finding who I was or at least trying to. The truth was, who I was meant to be wasn’t really out there, it was inside of me all along. I don’t remember a particular moment, but there came a time after a long conversation with God and my mom, I decided that it didn’t matter. I was who I was. I was this way for a reason. I didn’t know what that was, but that was okay. God doesn’t make mistakes. What if I had already made a difference due to my NF1 and I would never know? Would it be worth it? Of course!

This was a life-changing moment. As I made the agreement with myself and with God to move on and put this behind me, I found life. I had always lived by my disease, letting it make my decisions, letting it be who I was. Not anymore. I accepted my fate.

What happened after my acceptance?

It was shortly after that, I began writing. I wrote a novel called Letting Go—available on Amazon—and during this, I came to the decision that I wanted to be a writer. I am still writing novels and have also picked up freelancing: articles, blog posts, and more. Much of it is about video games and nerdy stuff. Yep, I accepted that fate too, one of my favorite fates. It really is a passion. I love writing and I love video games and that’s okay! I absolutely believe I will be rewarded and my career in writing will be blessed financially. I’ve followed not just my heart, but what God has put in my heart.

You know what else happened after I decided to define myself? Well, for my entire teenage-hood, I prayed that God would either take away my NF1, at least cosmetically, or send me someone who would love me despite it. I was not kidding when I suggested to God that this man be blind or suffer a similar deformity. I truly believed that was the only way. When I finally decided I deserved more than what I gave myself credit for, I knew that I couldn’t settle. If God sent me a blind man, great. Someone with a deformity? Great. No one? That’s great, too. More time for my career and other areas of my life. The important thing was, I would only accept the best. The one for me, if anyone at all.

In 2015, my brothers decided that they wanted to start playing a card game called Magic: The Gathering. I agreed; I loved trading card games.

My boyfriend

So, we started going to a weekly event where Magic players gathered, and it was a blast. I played with a variety of people, people that I thought little of outside of the game. They were simply opponents. Little did I know that a few weeks later, I would meet someone who would change my life. I saw him standing there, cards in hand. He was good-looking—but I won’t get into that—let me just say that I did notice. But more than anything, I wanted to play Magic. My first words to him were, of course, “Doyou want to duel?” I thought he was cute, and I knew he was special, but what I didn’t know was that this was the man I would spend the rest of my life with. We played that night and every week that we were both attending. Long story short, in a few months, we were definitely a couple. Now we know that we were meant to be and we want to spend the rest of our lives together. Ernesto knows about my NF1. He can see it, but more than that, he can see me.

My brother and my fiance

Today, I am a novelist, freelance writer, and I still love all the same things. I spend my time writing, playing games, hanging out with my wonderful, supportive family, and my amazing guy. I’m normal. Okay, so, I’m pretty weird, but that has nothing to do with my appearance—so maybe I like to wear superhero capes—nothing to do with my NF1, my tumors. I still have to go to my doctor, be careful in areas a normal person wouldn’t, and monitor my disease. But other than that, my life is normal. Sure, there is a good chance I won’t have kids, but hey, I could give a child a wonderful life through adoption. Besides, doctors make breakthroughs every day. In the end, I’m glad that I was given this disease. It has taught me a lot, made me a more accepting, stronger, and caring person. It just might have led me to the people that would see me for who I am, not how I look nor who the world portrays me as.

So please, if you do anything at all, let you define who you are. Saying that the inside counts sounds like a cop out for the insecure, but really, it is so true. You are defined by your heart, by how you treat other people, and by how or if you show your love. That’s what matters. When you accept yourself, love yourself, and be yourself, everything else should fall into place. You can then really learn to love others and be everything you are meant to be, and of course, meet everyone you are meant to meet. If you are not yourself, then what is the purpose of your life? There is no your life in that case. After all, only YOU can be YOU! So do it! You have a purpose, and it starts with finding yourself.

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Emily Medlock Emily Medlock

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