Wednesday, January 20, 2010

It has been a while, I know

Hi Everybody.

I have obviously decided to "privatize" my life recently. For me, most of the journey I feel like I can help with has been already documented. If you have read this blog, you know how I feel about many things. I have put my heart out there for pretty much anyone to see and left it exposed for a long time. I am not pulling any of it back, but I am deciding that it is time to re-focus my energy on the life that is in front of me and my family. If you have read my blog from back to front, then God bless you. You have seen my pain, my passion and many things that I never thought I would ever share with the world. If you read it all, you have probably felt a portion of my pain, and I have to apologize for that because it is the last thing I ever want to cause anyone.

So, this is what I feel the messages of this blog least today...

1) Live your life. You never know when your existence on this planet will change forever. If you are blessed with health then for God's sake, don't waste it worrying about small issues or petty problems.

2) Love without fear. Love is a blessing. It is something that you can't buy, borrow or sell. If it comes your way, you have to accept it and do everything in your humanly power to protect and enjoy it. If you fear losing it, you will kill it. If you don't love with freedom in your heart, you will only jail yourself. If love goes away, then it wasn't love and you can't have lost it because you never had it in the first place. So what is there to fear, really?

3) Love changes. Don't expect what you feel to be the same always. Just try to feel the truth of it. Whatever it is in your heart is what it IS. Don't judge Love, just feel it. Give it back. It will take care of you and itself.

4) Be strong. It is simple to say, much harder to do. Nothing you do for yourself will ever be worth a fragment of what you do for someone else. Step up. Give. Don't Give up.

5) You are amazing. The compassion I have felt from friends, family and even complete strangers has left me speechless and humbled on so many occasions I can't even begin to describe or document them here. I remain in the debt of so many people that if I tried to even begin to repay it, I would be overwhelmed in seconds. I know you don't expect it, and all I can do is try to repay the grace that I have felt back into the universe in some small way. The messages contained within this blog are a small token of my gratitude and humility. Love flows out to you, whoever you are, from me every day.

6) ALS Sucks. It sucks worse than any disease I have ever heard of. A diagnosis of ALS is currently a death sentence. There is no treatment, there is no cure. If you have read this blog, you know what it does to those affected by it. You know what it does to their friends and families. I won't belabor those points here. I will say that we can't quit looking for a cure. The fact that so few people have it compared to other diseases is no excuse. There are no survivors of the disease to advocate for it only devastated people left trying to move on with their lives. Genetic/Familial ALS only results in about 10% of cases, so the direct threat to people related to those with ALS is even somewhat remote (by comparison.) It is not a pretty scenario. I have had to take a break, but I will not stop advocating and educating people about this horrible devastating disease that NO ONE should ever have to suffer. (Ironically, when I spellcheck my blog, ALS is not recognized as a word) :-(

God Bless You.

1 comment:

  1. I wrote a document about my experience with ALS and PLS disease. I think everybody might eventually benefit by reading it.

    Just go to and click on "ALS and PLS Fundamentals – Death or Life?"

    or go to