Sunday, April 10, 2016

Puzzle Pieces

     “Why do you look like that? What’s wrong with you? Were you burned in a fire? Do you have leprosy?” These interrogations from strangers went further than the surface of my skin and into my core. They echoed in my head every time I tried to open up and for a very long time I couldn’t muster up the courage to look past how people viewed me. I wanted to be like everyone else and I detested being different. I despised having Lamellar Ichthyosis, a genetic and chronic skin disease that affects one in a million people, and I wanted it gone and out of my life.

“What happened to you? Haven’t you ever taken a bath before?” a random woman demanded while I was at a grocery store a few summers ago, freezing me dead in my tracks.

I took a deep breath and let it slide out:

“I have a skin disease, Lamellar Ichthyosis, it’s where my skin doesn’t separate correctly at the surface..” I tried to explain, but she quickly cut me off.

“How disgusting. If I were you I would never step out in public,” she responded before grabbing her son and strolling away. This certainly wasn’t the first time that someone had been ignorant about my skin disease or had made a rude remark, but it felt like someone had taken a sharp-edged knife to my heart and carved horribly intricate patterns in to it.

“I’m so angry at God for making me like this. I’m so tired of having this and having to deal with the constant stares and rude remarks,” I whispered to my mom later that day after I had finished telling her about what had happened.

"You really have a choice—do you want to spend your time being bitter and wishing things were different or do you want to allow the hardships to shape you into someone who is more caring, kind, and aware of others?” she replied.

“Make me better? How could this possibly make me better?” I questioned, puzzled and annoyed at her response.

“Maria, if I could take this away from you I would in a heartbeat,” she stated. “But God gave you this for a reason. So that you can shine His light in the world and make a difference. So that when people see you they can see peace and love radiating through despite how rude they may be to you. Don’t let other people affect how you feel about yourself. If they can’t see what a great person you are then they’re not worth a second of your time,” she finished.

     After being convinced of my self-worth in that moment, every aspect of my behavior was valorous. I was like a free bird soaring towards a different future that was exonerated from anger and pain. Now I realize that forgiveness is the most powerful weapon I have. I now understand fully that anger holds you down; it cripples you and removes the joy out of your life. It is so easy to remain submerged in the pain and anger, even hatred, and to become attached to the victim role. One thing that used to be a great struggle for me was that I believed that I had a right to be angry when people hurt me, but now I know I must forgive and forget. It’s still a constant struggle, but I’m taking it one day at a time. Those words of wisdom are ones I have to remind myself of constantly. I have to remind myself to not focus on the hurtful comments and thoughtless actions. I have to remind myself that I am not the problem when a stranger gets up in a hurry to move away from me or when someone wipes their hand off on their pants after shaking mine, as if Ichthyosis is something that can be caught. I have no way of changing how people behave or what they are thinking of, I can only be me, but that’s enough. During a recent conversation, I was told "I'm sorry" in reference to the struggles that I face. I quickly responded "I'm not." My experiences have enabled me to be more understanding and to be much kinder to every single person I encounter, despite how they may initially treat me.
     I realize that because I overcame a huge hurdle by changing my outlook on life and accepting myself, other hardships often pale in comparison. I am able to focus on all of the positive aspects of being alive, enjoying every moment with those who help me see beauty in every day and inspire me to soar beyond the horizon of the past. Having Ichthyosis has grown in me a deep sense of compassion for others and an ability to see true beauty in each person that I encounter. I wholeheartedly believe that everyone has a story to tell the world, and I want to be the one listening to it. Each person I encounter has something novel about the world to show me; some truth I would have never acquired had I not met them. 
     My biggest fear in life is focusing too much of my time and energy on things that don’t matter. The more experiences I have, the better I understand that we all have something to teach each other and learn from each other. All of our stories matter and each of them is like a puzzle piece in that when it is shared with others, it becomes a part of a grand and beautiful picture that helps them become more understanding of different, yet authentic human experiences. 

      Our darkest moments might ignite something in us and encourage us to step out of our comfort zone. When I look around me, I see so many people that are ashamed of their imperfections like I was for so long. Sharing pieces of my story helps heal those wounds that were haphazardly created through disheartening remarks and actions by allowing me to come to terms with the most heartbreaking parts of my story. 

      I was listening to a TED Talk recently and this stuck out to me: “Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity. If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path.” I am hoping that with this blog I will become more inspired to share more of my story and encourage other people to share theirs. Over the course of the next year I will be having conversations with those around me and asking them about their stories:  what inspires them, their most meaningful experience, or some challenge they’ve had to overcome, or whatever else is on their heart. I will then be sharing (whatever people give me permission to share, of course) on this blog. 
     Why?  My hope is that we can all learn from each other and be inspired to be more aware, more kind, and more willing to listen to others. I believe when we listen to others we get a more complete and beautiful picture of the world around us. We see that all the different pieces of people's stories are interconnected and that each piece is unique and irreplaceable. We are able to listen and challenge ourselves to care more and give more of our hearts to those around us. 
      For now, I will leave you with this: You matter. Your story and your experiences matter. Your ideas, your kindness, and your outlook on life are like no one else's. You have something unique and wonderful to offer the world and I hope you know that.

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