A GOOD NIGHT WITH ALS

Image

A Good Night With ALS

Last Thursday at The Hollywood Roosevelt Hotel, the ALS Association gave my wife and I an award for being inspirational people who fight ALS daily. This was our acceptance speech.

Ladies and gentlemen, generous supporters of the ALS Association, thank you and thanks to Ben Garant for presenting us with this award, and thanks to Mark Amin, David Higgins and Sobini Films for producing “Sexy Evil Genius” and “Jujitsu-ing Reality”. It’s a real honor and blessing for us to be here tonight to share this special moment with you. We would like to dedicate this award to my Mom, Tammy, who couldn’t be here tonight because of her own health reasons.

First of all, for the record, ALS totally fucking sucks. Just wanted to get that out of the way.

To put it in perspective, I look at myself in “Jujitsu-ing Reality”, which was shot only about two and a half years ago, and I think, look at that able-bodied guy. Sure, I was head-to-toe paralyzed, couldn’t speak or breathe without a machine, but I could still move my neck slightly, enough to use an on-screen keyboard. I wasn’t slack-jawed and drooling. My right eyelid wasn’t drooping, halfway closed. That is the nature of ALS. Just when you get comfortable with your level of disability, no matter how extreme, there’s always another muscle to lose.

First, you can’t walk, then move your arms, hands and neck, then you can’t eat, you can’t move your face or smile or laugh, then you can’t breathe and last to go is your ability to speak. All the while that your ability to interact with the world diminishes, your sense of wanting to reach out into it increases because your mind remains active and alert. It’s like being buried alive in your own body.

Sounds frustrating? It can be. Not just for you, but for the small army of people, saints and angels, it takes to keep you going.

So, why live? Easy. Life is beautiful. Every day is a chance to have fun and be creative. I get to see my four year old twin monkeys, er, I mean, boys, grow up, learn amazing stuff, and use me like a jungle gym. I get to see my wife smile, do her silly dances and wrestle with Rocky & Roman, our sons. I get to have my hands and feet licked by our dog, Penelope. The other day, I was in our backyard and I saw a hummingbird flying around our lemon tree. You just can’t enjoy life like that when you’re dead.

I’m just trying to paint a picture for you of what having ALS is like and why it is so important for you to support the ALS Association. Let’s find a cure for this horrible disease and help families afflicted by it.

It might be too late for a cure for me, I hope it’s not, but if it is, I would love for my epitaph to be, “He was the last person to die from ALS.”

Thank you. Thanks to my wife, Annabel, for reading this speech. And thanks to the ALS Association for this award.

 

11 Comments

Filed under Uncategorized

11 responses to “A GOOD NIGHT WITH ALS

  1. Fred

    Great speech!

  2. Sam & Arlene Detina

    Scott, we love you and you’re an inspiration to all you speak to. Arlene and I love your poetry and continued zest for life. We’re so sorry this dreadful illness has taken your physical being, but it has not robbed you of your spirit and courage.
    Sam & Arlene

  3. Jodi Bales

    Scott and Annabel
    I am not sure if you remember me but my name is Jodi Bales and for a time I had the chance to be a part of your life. I worked at the Forbes Norris Center in SF. It sure took a LONG time for the ALS association to figure out what I guess I knew from the first 5 minutes after I met you ( well ok to be totally honest) it was more like the 3rd time I met you and your family. So I agree ALS does totally f–ing sucks. Now that I am a grandmother I try to curb the #*%:Q!!ing swearing. But as far as I am concerned ALS deserves nothing more than that.
    I remember when you and Annabel were only talking about having children and when I came down to LA to see you at your home. I guess I wanted to say how really glad that I know that you are here in this world Scott, with your way of looking at it. And I am very glad to know that today I get to wish you congratulations on your award, but more than that thank you, for continuing to live your life as you see fit, I try to follow your example.
    Best Wishes
    Jodi Bales

  4. Brenda Hinerman

    You’re AMAZING! Your family is AMAZING! I love your love!
    Friends,
    Brenda

  5. Daniel Lew

    Scott and Ann

    Wonderful gala evening. Your physical act of being here says more than words can express. Your indefatigable act of courage to rise up and take on the ever increasing challenges of each day continues to inspire and amaze.
    In your eyes, I can still clearly see when you smile and laugh.

    HAPPY 14th Anniversary !!!

    Love
    Your bro
    Dan

  6. Phil Kantz

    We were blown away by this blog. You certainly deserve this honor!

    Sandi and Phil

  7. Tammy Lew aka Grandma Tammy

    My dearest son and daughter (in law),

    I am so deeply touched with your honoring me by dedicating your speech to me. I am so terribly sorry that my medical problems prevented me from being with both of you but, mentally I have always and will always be with you. Both of you continue to set a very high standard for the rest of us. Through the years of your illness and Ann’s tremendous care of you, I have learned much that I apply to myself. Your spirits of seeing the positive in your lives with joy and excitement has never ceased to amaze me. You once told me that it does not take much to make you happy and I now understand.
    We share your love and joy for Roman and Roxky. What a present you gave us!!
    Congradulations on your award! So deeply deserved!!
    Much Love, Mom

    • Tammy Lew aka Grandma Tammy

      We share you love and joy for ROMAN and ROCKY. (Excuse th typo!!)
      Mom

      My dearest son and daughter (in law),

      I am so deeply touched with your honoring me by dedicating your speech to me. I am so terribly sorry that my medical problems prevented me from being with both of you but, mentally I have always and will always be with you. Both of you continue to set a very high standard for the rest of us. Through the years of your illness and Ann’s tremendous care of you, I have learned much that I apply to myself. Your spirits of seeing the positive in your lives with joy and excitement has never ceased to amaze me. You once told me that it does not take much to make you happy and I now understand.
      We share your love and joy for Roman and Roxky. What a present you gave us!!
      Congradulations on your award! So deeply deserved!!
      Much Love, Mom

  8. kim

    Brad didn’t tell me about this. What a wonderful honor; congratulations to you both!

  9. Congratulations, Scott and Ann! You totally deserve that award. You guys are one of the ultimate power couples of all time. Love you two! xo

  10. Kym Verhovshek

    Scott –

    Congratulations to you and your wife on this well-deserved award. You were a talented and impressive individual when I knew you back in the 80′s at Glenbrook North, and clearly you are an even more impressive and courageous man today.

    My best to you and your family, and thank you for being an inspiration.

    - Kym Verhovshek (you knew me as Kim Baum)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s