My Thoughts for Today -US Rare Disease Day 2013

Today is US Rare Disease day, and I find myself swirling in a sense of irony. This morning I wrote a letter to my congressman and to President Obama in order to pay my contribution to RD day, as well as posting several blurbs about it on various social networking sites. 

The reason that I say this is ironic is because 3 years ago I would not have even paid attention to a cause like this. I can recall living in downtown Miami and griping when the streets would get closed off for various "walk for the cure" events. I would never even stop for a minute and think of the people whom these movements mean so much to. The people who actually live with conditions like cancer, MS, or a rare disease. I was more concerned about the detour that I had to take in order to get around the event and get to class on time. I would think to myself "What the heck is walking going to do anyway? It's not like it's going to make any difference but inconvenience a bunch of people that need to  use these streets." It was harsh. It was horrible. But on this blog I am nothing but honesty, raw and uncut.

Today I found myself feeling like such an insensitive fool for acting like that. I never thought that there would be a day that I would become "one of them". Now that I am, I realize why there are so many movements and so many efforts to try and raise awareness. To unite as one big voice in hopes to be heard. It's because we need research!  There is nothing worse than sitting across from your doctor and hearing them tell you that you can't be cured, only "managed". That you need to accept this as your new way of life and hope that one day there will be a cure. It's a tough pill to swallow for you, as well as for your family and friends. 

Now I look at awareness days like today in a whole new light. Since my diagnosis, I have had the privilege of getting to know some of the strongest and most courageous people on this Earth. These people are fighters, living every day with an immeasurable amount of willpower and faith. They refuse to let their diseases conquer them, and they refuse to take it lying down. 

When I first got sick, I was scared and I felt alone. I was suddenly thrown into a world that was completely unfamiliar to me, and my entire life as I knew it was turned upside down. But it was these wonderful people who helped me. They guided me and they supported me. They lovingly opened their arms to me and accepted me. The same people that I once complained about making me late for school with their awareness rallies. Big reality check.

Another big reality check came to me today.  I busied myself all morning posting awareness blurbs and writing letters. After I was done, I was really happy with my efforts and that I could share my story with the others on such an important day. Now, as I sit here at the day's end, I am stricken with a sense of sadness. Hardly any of the healthy people paid any mind to my efforts. Photos of my duck have gotten twice as much attention as my posts for such an important cause. This brought me back to that day in the car, and I realized that back then I probably wouldn't have paid any mind either. 

Today on RD day I want to say thank you to all of you who have given and continue to give me guidance. It has been a bumpy, scary, and uncertain road but I am so grateful to be walking it along side of such incredible people. Thank you to foundations like NORD (National Organization for Rare Disorders) who continue to be such a powerful voice for those of us with rare diseases. Thank you to my family for always being there and keeping me strong. Thank you to everyone out there who refuses to give up and who won't take no for an answer. 

Today is the day that we make our voices heard. Never give up hope. The answers are out there, and together we are strong. Together we will heal.

God Bless all of you!!

~ Shannon