I contemplated this undertaking for quite some time before I finally pulled the trigger. It’s just writing, I know. To me, though, there is more behind it. It’s more than just me rambling on. Hard to believe? Yeah, I know.
When I was first diagnosed with ALS, I spent much of the first few months sad, confused. Then I started reading stories about pALS who were truly LIVING with the disease. The cogs started to slowly turn. I think I turned a corner after watching the movie Gleason . It absolutely opened my eyes to the idea of not allowing the limitations of this disease to extinguish my desire to have a great life. Once I opened up that channel, I began to see more and more of the positive side of facing ALS. People like Augie Nieto, Beth Hebron, Jay Smith and Sarah Coglianese. They are just a handful of my inspiration.
Now, the wheels are spinning. That is when I decided that I was not going to sit idly by. From that point on, I chose to be a proponent for ALS advocacy and to be a part of the fight to find a cure and to bring about awareness in any way I can. I am a huge believer in research. So , I quickly volunteered and participated in a clinical trial. I have been or am taking part in several other research studies. It is not uncommon for me to be asked to be a representative for the local ALS Association chapter. I am frequently found in social media groups and Internet forums trying to help others.
So, it seemed that the next logical step for me to take was to tell my story and try to broaden my reach. But how? I am not an important figure and who really cares? That is what I battled with for about a year. Finally, I just said fuck it. What did I have to lose? I knew I had plenty of time on my hands and plenty opinion! Writing is pretty easy for me. Blogging is the perfect outlet. I can create my own content, put it out there and let what happens happen.
I do have a goal in mind. I don’t share my life to see who sympathizes or to boast about what I do. I am not searching for pats on the back. I honestly believe in the old idea that if I can reach one person out there, I have succeeded. I want to effect change in someone’s life. It doesn’t matter to me how big or small. Maybe one of you just needs encouragement. Maybe one of you just needs to see that you are not alone in your fight. Maybe someone will have a profound revelation. Who knows?
The bottom line is I want to help ! I want to do something bigger than myself. I want to be a part of something bigger than myself!