Friday, January 19, 2018

Sharing my Battle with the rest of my World (Repost)

Originally posted to Facebook October 17th, 2017 

This post may be a bit heavy for some. Fair warning....
It comes from love.

Today I felt a calling to begin to share and express my very personal life to my extended family of friends. I think the time has come to share my challenges. I need to face them in the open, if for nothing else that if it only helps even one other person then it’s worth the world. I may be a sensitive dude but I don’t do this personal stuff well.

Perhaps I’m inspired by all of the selfless love and sharing from my many brave friends sharing openly in their own grief. Helping others while helpless themselves by storms or illness and things mostly out of their control. But still I feel we all are here to be of service, to be helpful to others in this time of unknown craziness in this world. So hard to do, so easy to say.

So I too have decided to step up and help if I can. I can’t do much physically. But what I can do is help and share a piece of me that I’ve been holding in and keeping close. I can no longer not offer to share what I’ve been through and what I’ve learned and lost these last 5 years as it might just help someone else.

As of now I’m living on borrowed time....
But we all are really.

To those old time friends from high school and college, to my Dead Head comrades, to all my wonderful new and old internet family that I’ve grown to love through music and our love of life, to my Apple family and friends...
this will be news to you.

I have been battling ALS (Lou Gehrig’s Disease) for likely 4-5 years now. If you’ve seen me, you’ve seen the progression from a small limp to my current state of disability in a power wheel chair. I’ve been afraid, sad, pissed, even grateful sometimes. It runs the whole gamut. But I see the world differently now and I’ve finally arrived at acceptance. That wasn’t easy and it breaks my heart to see my kids and family not be able to get there yet. I love you all so much!

To my closest friendships and my fearless family that have been holding me tight during this scary and helpless ride... you are my angels that will take me home.

I want to say just for now, fight your fight. Whatever it may be. No matter how small or large. Be there for others and let them be there for you. Depression comes and goes but I’m just now learning to get my ass out and see Live Music again and maybe even more of this beautiful world while I still can.

I’m not looking for sympathy (although kind words make me feel very nice) I’m looking to be someone to share mutual support. Someone you can talk to. For all of you, the ones with the unlucky breaks. Let’s fight. Together. As one. We will find those moments. Those moments that are few and far between that get you to forget we’re sick, or lost our home to tragedy and laugh, Love and feel Joy. Maybe even get up and dance again. 

Know that we are loved!
Peace & Love

p.s. I will not be putting up daily updates or long articles and things or asking for money. I may start a blog for those who may be at all interested in my progress. I’m hoping I’ll be around a few more years but no one knows this... I’ve lived a freaking fantastic and amazing life, an incredible family and the unbelievable chance to rekindle the love of my life. My two kids will be that part of me that will live on as the Angels to carry me home. 

“So speak kind to a stranger
Cause you'll never know
It just might be an angel come
Knockin' at your door

And I'm waiting on an angel
And I know it won't be long
To find myself a resting place
In my angel's arms”

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