Alright, I’ll say it…ALS f*cking sucks. Sorry not sorry for the language, because it’s 100% true. I’ve seen my grandmother suffer from it, I’ve met patients who’ve been battling the disease for years, and I’ve read dozens and dozens of stories online.
The disease can strike at any time in a person’s life and it spares no one. ALS doesn’t feel bad for how many families it’s destroyed, it doesn’t feel guilty for how many lives it has taken, and it definitely doesn’t care about patients who have yet to be diagnosed. Instead it just takes and takes and takes until there is nothing left to take – no motor function, no emotion, no quality of life.
But honestly, I hate talking about the disease. I don’t want to spend time talking about the horrible things it does to the body and how it puts an expiration date on someone’s life. I mean really, who wants to talk about something like that?
But honestly, we have to. Awareness is key to stopping ALS once and for all. We need to talk about the disease so more people are exposed to its devastating ways. We need to fund research to find medications that treat symptoms and prolong life or even better, a cure, and we need to be as relentless in the fight against ALS as it is on patients’ bodies.
Take a look at the recent VICE episode, “Die Trying – The Battle for ALS Treatment” to see firsthand the struggles patients have to deal with, both with their bodies and getting medication that can potentially save their lives.
That video was just a glimpse into the lives of ALS patients. I want to put it alllll out there for you guys. And I’ll start by sharing the remarkable stories of the people behind the disease. They are the reason I’ve been an advocate for over 10 years and they are the reason I’m pushing my limits to run the Boston Marathon.
Facing the challenge of a terminal illness is something that I don’t think anyone can truly understand unless you yourself are put in that situation. (And I hope no one reading this is ever put in that situation). You can imagine that it would be an incredibly depressing and disheartening experience, and it most definitely is. But what I see in almost every ALS story is an inspiring new outlook on life.
It’s truly amazing to watch. These people aren’t letting ALS define who they are and what they will become. They are making the most of the time and abilities they have left and are living life to the fullest.
That’s my motivation; these incredible people who are KICKING ALS’S ASS. And I want to help them do it. Reading their stories have been such an inspiration to me on this journey and I want to share them all with you. Each week leading up to the race, I will be sharing a new ALS story – you’ll cry, laugh, be angry, and maybe smile, but hopefully you’ll be just as motivated as me to help find a cure for this disease.
More to come next week! ❤
Check out my Crowdrise page to donate to my campaign & support these ALS Warriors: http://bit.ly/BostonBeginnings262