Month: April 2015

In those 5 minutes, we become one. 

The past few weeks and even months have been extremely busy and exciting for me. I’ve been able to speak at a couple different schools at their Dance Marathons, an event to raise money for my local children’s hospital. I’ve been asked to share my “Riley Story” basically explaining how Riley hospital has helped me. Of course I’ve jumped at all opportunities because I have so much to say about it. Over the past three years being a teenager with a chronic illness has very much impacted my social life and how I’ve had to manage certain situations/challenges but also embrace limitations. Riley has been a huge part of making all of these things possible for me to accomplish. So I will always have a huge spot in my heart for what I personally have accomplished through Riley, on my own, and with their support. I spent the past week with my family and extended family and it only further confirmed what I have been saying these past few weeks to so many people. You see, a lot of Riley patients will tell their story of survival, they will talk about what they’ve gone through and where they are now but I’ve taken it from a completely different angle. Of course the reason for me having such a connection with the hospital is because of my condition, however what I have gained from the experience is so much more. Rather than focusing on how I am sick I have focused on talking about how I am different from these dancers raising money but how it actuay makes me like them in a lot of ways. I’m here to make a difference as are they. My message to them isn’t that sick kids go through so much and that donations continue to help and enrich their wellbeing, which is a very true point as donations are vital to the continuation of the progression in multiple aspects of the hospital but I’ve already concluded that a few of my other friends Sneha, and Abbie can do that part (they’re much better at talking about the medical stuff). I’ve gone for the aspect of the value of living with a purpose. That putting your mind towards something and succeeding is such an accomplishment and that is where the dancers and I are one. For 5 minutes on that stage I become equal with every single one of them even though in that moment we are as different as can be. I’m the patient and they’re the visitor but still we become one in the mindset of realizing the value of life. An overwhelming joy for the beauty of life in that 5 moments it’s truly unexplainable. You see when I got asked to speak I worried that it would be dangerous for me as it would rehash everything I’ve worked so hard to overcome. That maybe talking about my differences would open a wound I spend every minute of every day trying to heal. So I was hesitant, but sometimes when we think we know ourselves so well we still surprise ourselves. Because of  that chance to stand in front of hundreds of people and talk about how special these people mean to me for giving their time, and I do mean it because these are high school and college kids that I know are wanting to be at a party in the back of their mind. But because they have come together for these 5 minutes with me they are able to give me an overwhelming sense of acceptance and joy in being able to embrace my story and to them, I hope I am giving just as much. The joy that is felt for just each breath, the motivation to make their breath mean something, because they do have the capability. So then how does my week at the beach confirm all of this? Well my sweet little 2 and a half year old cousin does. As I watched her wake up each morning with nothing but utter joy to play in the sand I got that unexplainable feeling again. She has pure joy for the sand, nothing else in that moment matters to her. She is wearing every inch of pride she has on her sleeve. She doesn’t have much of a story yet, but she will. I encourage you to live with each inch of pride on your sleeve too, and your story, I encourage you to openly carry that too with all its ugly pages too because they are what make our smiles so much more unexplainable when we accomplish it. It’s unexplainable friends, the overwhelming possibilities we have here, they’re just unexplainable. If I can leave one thing with you it is this: be openly true to what you have experienced in your life, because the warmth you will feel inside when you reach the full acceptance of truly being yourself, that is something that will carry you forward for the rest of your time. Find yourself and don’t look back ever again. Be absolutely you, don’t conform or adjust your goals/dreams so they fit others, take yours and run with them. Run with your pride and your YOU. 

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