I know that I have built an optimistic platform and that I want to keep smiling through disability. However, I also want to let everyone know that I do not have it all figured out. I pretend to, but some days, the hardships that come with FA beat me. I want to show the realness of the disease as well as the positive stuff. Because, news flash, it is real and this stuff actually happens to me. No matter how many times I push it away or pretend it doesn't exist, it is still there. Some days I just break down in tears because I am so tired and feel like I can't operate anymore. It is hard when I can't do something that I knew I could do not that long ago. It is hard to accept the help that I need in order to be able to do something simple. It is hard to wake up everyday and push through the pain that I get in my feet. Worst of all, it is hard sometimes to smile through all of the pain. But I do it. I figure out a way to do what I want, I accept help when needed, I get out of bed, and most importantly, I smile. I'm not sharing this so that you will feel sorry for me, I'm sharing this because I want to show you that this disease is REAL. It affects me and 15,000 other people every day. I am not some girl behind a computer screen or a camera whose disease never gets to her.
FA is one of those things that is really hard for people who are not experiencing it to understand. It's even hard for me to understand sometimes. The truth of the matter is that I am not always the optimistic girl that you see online. I have days where I am questioning why this is even happening to me, days where I am stressed out by all the doctor appointments, days where I just want it all to stop. But it's not going to stop, not until we find a cure, not unless we have hope. Hope. That is why I am writing this right now, why I post videos on my YouTube once a week, why I talk to you guys on Instagram, why I write posts on Facebook, why I keep fighting. One day, there is going to be a cure for FA. When that happens, "Make it Happen" is not going anywhere. Right now, we are working to make a cure for FA happen, but in the future, it might be to make accessibility everywhere happen or to raise awareness for rare diseases in general. That's what this is all about. Staying strong and having hope.