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Hometown, state: Van Nuys, Calif.
Age: 40
Family (spouse/partner; child, grandchildren): Wife, Annabel.
Hobbies/Interests: Movies, boxing, current events, music, reading and writing, appreciating art, sampling exotic “medical” teas, playing with my dog.
Favorite quote: “Me, we.” – the shortest poem in the world, by Muhammad Ali
Date of ALS diagnosis: August 2002
Tell us about your life before ALS: Aside from eating, breathing, walking, using my hands or holding up my head, it is almost exactly the same. I am a screenwriter and still work, to this day. I used to be a director, but that vocation went the way of my musculature. I also used to tell a lot of bad jokes. Now all my jokes are all pretty freaking killer.
Tell us about your life with ALS: It’s challenging, no doubt about it. Everything is a challenge, including basic communication. But I still have lots of fun and found, the hard way, that love is the most powerful force in the universe. Also, now not being able to do either, I can say that not eating is definitely tougher than not walking.
Do you have a “life motto” or profound words to live by? A friend made a movie about me making a movie called “Bickford Shmeckler’s Cool Ideas,” in which he used my quote “surf life” as my motto. I love that. Also, “Mean people suck” always struck a deep resonant chord with me. On a more literary note, I always liked Hamlet: “Nothing is good or evil, but the thinking it makes it so…” Also, “If you can, marry someone amazing” is a motto I just thought of, but totally is one I believe.
Has there been an “aha!” moment or a specific turn of events that has helped you live with ALS? Just be happy with what you can do and forget the rest. I will always have my mind, and that’s the most fun part of my anatomy, anyway. Once I figured that out, everything was OK.
Tell us how ALS has brought new significance to any aspect of your life — family, attitude, hobbies/passions, career, etc.: In every way. You begin to see things in their correct state of being, which is temporary. Odd moments become more profound and infused with meaning. Since I am a writer by trade, these insights have helped me write with more clarity, detail and nuance. I also have a deeper appreciation for things like dancing and playing music, which I can no longer do, but enjoy watching others perform….although if possible I would recommend people discover these life insights on their own without contracting ALS.
Is there anything else about you and/or ALS that you want to share with people who read your story? ALS doesn’t have to be the end of your road, but it is certainly the beginning of a new road. If you treat it like an adventure, it will be. Don’t push away people who love you, or be too proud to accept the help you will need from friends, family, even strangers. You have to be outrageously lucky to get ALS. If you examine your life, you’ll find that luck just about everywhere.
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