Preamble: The following bit of joy is based on my experience and choices, regarding living with ALS. I would like to be very clear that, in my opinion, ALS sucks… big time. Despite my ever present smile and positive mental attitude, I still get sad, depressed, frustrated and pissed off at the cards I've been dealt. During those hours of darkness, I cling to words of wisdom from two of the worlds greatest philosophers; words that are guaranteed to shine light on my day: "I am into happy and & I don't like sad" ~Hank Williams Jr. "Life is…too short" ~Too$hort Hearing the words,"You have ALS" is devastating. At that moment, it feels as if your life is over; your future and dreams destroyed. This is true to some extent, and we all grieve the loss of the life we were meant to live. At a certain point, however, grieving turns into negativity…and negativity will consume you. Keeping a positive mental attitude, as ALS consumes your world is far from easy; but it will save you from the darkness. We did not choose this new scary ALS path, but we can choose how we navigate our newly redirected lives. There is a freedom that comes with having your freedom taken from you. Try to wrap your mind around that: There is a freedom that comes with having your freedom taken from you. In other words, with ALS, most of your future is out of your hands, like it or not.… so what else are you going to do? Imagine you have been chained and padlocked, in the front seat of the scariest roller coaster in the world. There is no key to unlock the chains and the ride is permanently stuck on full-speed and repeat. You cannot change the fact that you are stuck on this ride, but you can choose to raise your arms up in the air, for as long as possible… and you can choose to scream at the top of your lungs, until you can't scream anymore. Whether you choose to scream and raise your fists in anger, advocacy, joy or just for the hell of it… at least you are living your life, alive. It certainly beats silently waiting to die. And if the time comes when you can no longer raise your arms and scream, remember that you are not alone on this ride. There is a pretty long train full of friends who have your back. Friends who will raise their fists and make noise on your behalf –no questions asked, no judgment…only kindness, camaraderie and support. That's how we roll.
Please sign this petition, to help Jamie gain access to life saving therapies: https://iamals.org/action/brainstorm-fda-petition/
You can help make a change in the lives of thousands of people suffering from this terrible fatal disease.