I have moments where I miss my old self. But I think anyone can get caught up in what we used to have. But at the same time, we can choose to focus on the beauty of now.
Steve Gleason
Life is difficult. Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love - I think that's the meaning of this human experience.
I look at the human life like an experiment. Every new moment, every new experience, tragic or otherwise, is an opportunity to gain a more accurate perspective and helps lead me to clarity.
Typing with your fingers or thumbs is sooooo 2012. I tweeted that earlier in the year. I type with my eyes. Not only that, I navigate my computer, create and play music, keep a calendar, conference call, lead web X meetings, text and, obviously, tweet with my eyes.
I believe happiness is a choice. Some days it is a very difficult choice.
If we have a purpose in life beyond being a cog in the human machine, mine is to help inspire people and that's pretty cool. I would like to motivate the world.
I have been diagnosed with Amyotrophic Lateral Sclerosis (ALS). It's a terminal disease with an average lifespan of two to five years post-diagnosis, and scientists don't know what causes it. ALS prevents your brain from talking to your muscles. As a result, muscles die. As a result, every 90 minutes people die. I am a person.
Does anyone know if Lamborghini makes wheelchair vehicles? If not, I want to change that.
To cure ALS medically is not economical. The realities are that it's difficult to find funding for research for a medical cure. I believe in developing technology as opposed to medical research. Technology can be economical.
I think about death all the time. I think that's a good thing because we're all going to die, and the only thing we can control is how we are and what we're doing in the meantime.
Many ALS patients end up fading away quietly and dying. For me, this was not OK. I did not want to fade away quietly.
Because ALS is underfunded, patients have had no option but to fade away and die. That is not OK.
A terminal diagnosis can really mess with your head. Honestly, it makes you want to run away to the moon. Many ALS patients want to fade away quietly. This was not for me.
ALS does not affect cognitive process. Stephen Hawking, one of smartest people on the planet, has ALS. It rarely affects the eyes. It doesn't affect senses like hearing, taste and touch.
The film 'The Diving Bell and the Butterfly,' based the book of the same name, has a line that enlightens and comforts me. The protagonist, who has lost all ability to move except one eye, discusses his role as a father. He notes, 'Even a fraction of a father is still a father.'
It's pretty simple for me; I believe all people are created equal, regardless of their sexuality. To promote respect and acceptance is an important role for NFL players and the NFLPA.
To have a statue of you up 100 years from now at the Superdome, I think that's amazing.
