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    Posted March 1, 2014 by
    Steph15
    Assignment
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    This iReport is part of an assignment:
    Living with a rare disease?

    Fearless: My Journey to Happiness

     
    When people think of a rare disease, gift and blessing may be the last words they use to describe it but they are mine. I used to hear the quote"its the journey and not the destination".It was not until I battled through my greatest obstacle that my obstacle became my blessing. Often when people see stories of rare disease day you hear about negatives about how it affected their life and not the positive.
    It took me many many years to get to where I am today. I am symptom managed and no pain. But it wasn't always that way. I remember sitting my doctors office when he told me you have this neurological disorder that has no cure hard to manage but dont worry youll be ok. I didn't know whether to laugh or cry. Needless to say, I spent most days and nights crying in my room. Crying because of the pain, crying because I felt misunderstood, and lastly crying because I didn't know how to live my life know and accept everything.
    I learned many lessons throughout my journey. The first lesson I learned for myself is to totally accept my disorder. Easier said than done right? But its true at the end of the day I cant make it go away and I cant cure it. So since I cant change that I can control my reaction to it. And I did. I began to realize more and more despite the severity of pain I was in, life would go on regardless. It wasn't stopping for me anytime soon to get over my illness and then resume like in movies. I decided to never let my disease control my life early on. I continued to go to graduate school, worked, and tried to live my life as normal as I could. Even though most weeks I felt like I was at the doctors more than I was home. The point is I tried. Even though I was told by those around me, you need to take an easy. That wasn't going to do it for me. I wasn't satisfied with that for myself knowing how hard I worked in my classes. I had a dream, and nothing was going to stop me from reaching it.
    I spent over two years in constant pain every day of my life. But it never stopped me from doing what I love. I found ways to cope to do activities that I did before so i can still have fun in my life. I learned a little of guitar so when my head pain was severe I didn't have to increase that pain by blowing air in an instrument. I started to wear reading glasses so I can see words in class. I also learned to change settings on the computer for brightness and font size so I can see the words better on the screen and in books.
    I found ways to reframe my mindset of my disease as mindfulness meditation and music. I started practicing yoga and meditation. I found different yoga poses that helped for pain relief. Not that it took it away completely but it definitely made it more manageable. Yoga and meditation strengthened my body and mind. Together I was able to decrease anxieties and stress with my disease while increasing muscle strength. Music strengthened my heart and soul. I listened to "Stand" by Casadee Pope over and over again because for me she sang the words I couldn't fiqure out how to say and feel. After listening to the song I would feel empowered and fearless.
    So where did my journey of fearless lead me?? To the happiest I have been in my entire life. With my symptoms managed I feel like a brand new person I never knew existed. Finding someone with my disease who is not experiencing pain is like finding a needle in haystack, typically doesn't happen. I was told I should take time off, i didnt. I was told activities would be difficult for me, I started dancing. I was told, they didn't know when my feeling in my body would come back, and it did after my surgery. Every limitation that was set for me due to my illness, I defied.
    The fact is everyone is fighting something, whether it is a rare disease or not. Everyone at some point in their life feels misunderstood, pain, and stress. But everyone can make a choice to live their life the way they want to. I feel like my disease didn't "kill" me it saved me. I am the happiest person I have ever been. I look at life through a new lense. Every sunset, green leaf, daisy, and butterfly is the most beautiful thing to me know. After all if your life is a story, how are you going to make yours the best seller!!
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