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.
Sentiment: NEGATIVE
Because ALS is underfunded, patients have had no option but to fade away and die. That is not OK.
Many ALS patients end up fading away quietly and dying. For me, this was not OK. I did not want to fade away quietly.
The doctor who diagnosed me with ALS, or motor neuron disease, told me that it would kill me in two or three years.
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.
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 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.
Whatever I might have imagined a terminal diagnosis would do to my spirit, it summoned quite the opposite - the greatest appreciation for life itself. So I will never give up, and I will never give in.
A lot of people asked me if it was frustrating not having a clear specific diagnosis, but I didn't mind, I just chose the most optimistic diagnosis.
I think I had four concussions throughout my career that were diagnosed, and I guess that I've had seven more. But the fact that three of them came in a four month span when I was making a comeback in 2004 is a little bit scary.
The tricky part of illness is that, as you go through it, your values are constantly changing... You may decide you want to spend your time working as a neurosurgeon, but two months later, you may want to learn to play the saxophone or devote yourself to the church. Death may be a one-time event, but living with terminal illness is a process.
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