My notes from the Sept 28 fundrasier

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THE FOLLOWING IS A TRANSCRIPT FROM
MY TALK PRESENTED AT A FUNDRAISING
EVENT ON SEPT. 28, 2006 IN MILL VALLEY, CA
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Good evening, Boa noite, Buenos noches.

Thank you so much for being here. I am moved to tears to see all of you and feel this absolutely incredible outpouring of love and support. I have so much gratitude and appreciation—thank you! You give me strength and courage. With you by my side I will never give up.

I am so humbled to be standing before you today under these circumstances. In fact, I’m so humbled, that I have to sit. (crowd laughs)

Some special thanks are in order---- Mom and Dad—tirelessly help me with everything—even my bitching and grumpiness.

Everyone who has been involved in this event. 6 buddies gathered to start this - Eric, Eric, Michal, Marc, Tim, Andrew. Helped me overcome my reluctance and ego resistance. All angels! Please stand up. THANK YOU! You made this happen my band of bros/sisters—I am blessed. I want to give a very special thanks to my sister Mary. Without her love and drive none of this would have happened. There is nobody in the world I feel closer too Mary – I love you!

Now, I have good new and bad news. Do you want to hear? The good news is, I’m still alive. As Monty Python says, “I’m not dead yet”! The bad news is, I’m out of money. (crowd laughs)

3 years in Argentina & Brazil pursuing medical/spiritual healing in mind and body. It’s been a crazy, wild adventure. Many of you have helped me—some of you have made 2 or 3 trips. Everyone who has been down to Argentina/Brazil, please stand up. THANK YOU. Special thanks to Leslie & J.P. Theriot — they made Argentina very accommodating and really helped me feel like family.

I want to share just a few thoughts. Rules #1 though — no crying! This is a blubber-free zone!

I want to talk about why I’m still alive today and what keeps me going:

3 interrelated forces--FAITH, HOPE and LOVE--
[ ] Faith—domain of the soul, god
[ ] Hope—domain of the mind, medicine
[ ] Love—domain of the heart

Faith – my faith is in god, the divine. I was to start with the people of South America who have taught me infinite amounts about faith. Their faith is passionate, intense and contagious. Instinctively, given my predicament, I knew that I needed to have this energy in my life.

Next I want to touch on deeper truths -- I have learned that faith is beyond rational intellectual analysis. It comes from a deeper place, a deeper wisdom or consciousness. It has required me to ponder the deeper truths in life, such as why are we here? What’s our purpose on earth? What happens when we die? Who created all of this? The material world vs. the spiritual world. And what's real and not real?

Anything is possible -- My faith is the counter balance to fear, sadness, anxiety and stress. Whenever I say god, I’m in your hands, truly, my fears disappear. My faith tells me that anything is possible with God. My faith has allowed me to live two years beyond my expected time horizon. And hopefully many more years to come. Now is when we chant--4 MORE YEARS! (crowd laughs)

We are connected -- Nearly everyday I was in Brazil somebody would remind me to keep my faith in god and in my ability to heal. This would always remind me what the game was all about. Faith reminds me that we are connected to each other; we are not separate--- because there is something much bigger than this material world around us.

Suffering -- I have come to learn that my suffering is an integral ingredient to spiritual growth. It is the key component to change. Previously, I avoided suffering at all costs. I would do anything to stay on easy street. But now I have been forced to climb a very treacherous mountain without a guide or any clear road map. The mountain is getting steeper, colder, wetter and more difficult to climb. The air is thin and pack is heavy. This has required me to look and evolve from the inside and navigate my life with an entirely different perspective – a new set of tools. Getting to the top can take different forms, different meanings. It’s ironic how suffering awakens the soul and reveals deeper truths.

From the spirit to science. Now I want to talk about Hope ( or “esperanza”)

First I would like to talk about new developments in the area of medicine. There are new developments as medical science forges ahead everyday to find cures for neurological disorders. Stem cell is making great strides daily all over the world. 3 years ago I moved to Argentina. I participated in an experimental therapy using t-cell vaccine and stem cell therapies. These techniques may have helped some and have evolved significantly, but still have a long way to go before a cure is found. I have been asked to participate in a bone marrow stem cell treatment pioneered by a team of doctors from Israel—this has promise. By extracting stem cells from my bone marrow they will grow, culture, then differentiate them into nerve cells over 5 weeks. They will then inject them into my spine. I hope this process will stop and reverse the progression of ALS. Your generosity tonight will fund this effort.

Now I will touch on the area of Holistic medicine. I also am hopeful to continue other treatments both holistic and medically. Perhaps it’s the combination of therapies that has kept me alive. Some of these therapies include:
1. Chinese herbs for ALS, over 500 people are using these herbs and they taste horrible.
2. A whole host of supplements and vitamins for nerve regeneration and immune enhancement
3. Acupuncture, physical therapy, energetic medicine AT101, John of god
4. Pharmaceuticals- antibiotics and other drugs,
5. Regimens for detoxifying the body
6. Live cell therapy, which are stem cells from pigs
7. Intravenous antioxidants -- glutathione phosotydlecholine
8. Mind body healing techniques- affirmation, meditation and visualization

The hope is that I continue to cluster the most effective therapies to knock this disease out. I don't feel there is a silver bullet out there for curing ALS. It’s a trial and error process in combining the most effective therapies in mind, body, and soul. Maybe, just maybe, I will happen upon the right mix.

Last, and definitely not least, comes Love. First giving love. Trust me when I say that giving and receiving love is he best medicine on earth, bar none! I have had the unique opportunity to be of service and to give love to other people like me in wheelchairs or with serious illnesses. I created an organization of caregivers to disabled people called Heavens Helpers. The work has been at times hilarious, at time tragic and always fulfilling. I have come to learn that service work ROCKS and is seriously under-rated. It has fed my soul, and I believe it has helped me stay alive today.

When it comes to receiving love, the love for my children, my family, and all of you, my friends, inspires me to continue the fight. You give me the wind that powers me through the stormy seas. You have stood by me through this entire experience and your here now. It is truly your energy that keeps me hopeful. With you I don't feel like a guy disabled in a wheel chair. I feel like a thriving soul. I feel like a normal guy who is loved. Thank you from the bottom of my heart.