YOU ARE THE HERO OF YOUR STORY
There’s not much more to it than that!
When Brian was diagnosed his doctor handed him a pamphlet and said, “You have ALS. You’ve got two to five years to live.” It was cold and matter of fact. He gave Brian no resources or tips or even a shred of hope. His job was done.
I could tell you so many stories of people we’ve encountered in the healthcare community that just don’t care. It’s frustrating and infuriating. Early on, for some reason, I thought that the letters “ALS” would strike a chord with healthcare workers, as surely they would get it.
Yet, even when Brian was in intensive care, there was so many staff at the hospital that didn’t understand that Brian was paralyzed without the ability to speak, but with a sharp mind. There’s still just not a lot of understanding when it comes to ALS. It’s getting there, but we’ve got a long way to go.
As I’ve navigated the system and tried to find resources for us, it’s been quite a challenge. Many times along the way I’ve connected with people I thought might sort of take the ball and run with it and maybe figure certain things out for us. Or that maybe we’ve have an advocate or liaison that was really helping look out for us.
Many times I feel it would be so helpful to have a team at Medicare that was knowledgeable about ALS and had resources in every state, something like that.
But time and time again, I’ve come to realize I am going to be Brian’s biggest advocate and cheerleader. People will help where they can, but we are going to have to be the ones to figure things out for ourselves. No one is coming to save us. We will save ourselves. It’s not easy, but so worth it.
Silver lining: It’s been tough, but at the same time we’ve both learned about many things and we also know we are stronger than we ever thought. Another lesson that ALS has really taught us, and something else that applies to other areas and life in general.
You are the hero of your story! Yes, YOU!!!
