The Grand Experiment

October 19, 2015. Brawley, CA. I have become Rae’s science project. She consulted with several nutritionists before the ride. She weighs me before and after each meal. She weighs me at the beginning and end of each day. Everything I eat is dictated to Lynny, Luci or Andi and meticulously catalogued in a little blue composition notebook.


If I eat anything on the road, I take a picture of the nutritional facts and send it to her. When we come in she grills Ian about how much and what I ate extra, to write in her notebook. Rae has also put Ian in charge of making sure that I pee every two hours, although how he’s supposed to do this I’m not sure. Check my levels maybe? We went to a specialist in St. Louis, M.O. a month or so before the ride. One of the things that he said that made the biggest impression on me is that when he sees people get into a negative caloric balance (as in expending more calories than what they consume) the disease progresses more rapidly. I don’t eat that much when I ride in general so, that’s obviously something that has to change. At this point my whole life has become an experiment. I’m riding across the country with ALS.


Tonight we stopped in Brawley, CA. The innkeeper lent us his grill, and brought out a folding table and we dined alfresco in the parking lot. Consuming calories presents several challenges. Apart from the sheer quantity that I have to eat–I burned 5,338  today alone–getting it from my mouth to my stomach can be an issue. When I try to drink something there are generally two things can happen. A) It can go down my throat. Or B) It can come back out my mouth (sometimes with surprising velocity). And today I added an option C) to my repertoire while drinking a cold frappuccino when it came back up out my nose. Eating, presents its own set of challenges. Once I put food in my mouth it’s a considerable investment of time before I can talk again. During dinner conversations, if there is something I wish to contribute it’s generally three topics along before I can safely talk without the people around me needing protective clothing. It’s as if my life is on a perpetual five minute delay during dinner.


When we left Descanso this morning we hit uphills right away. Strangely I feel more confident going uphill. I feel like I have more control. Going downhill, I’m always on the brake for fear of getting up too much speed and hitting a pothole or a rock and losing control of the bike. The option of holding the drops is something I no longer have. So I can grip the brake hoods with my good hand which gives me stability (or at least the illusion thereof) but I have no ability to brake. Or I can reach release my deathgrip and extend my fingers to the brakes but I lose all stability. For 20 miles of today’s ride the road was in significant disrepair, the road was so shaky that my GoPro fell off, along with the mounting hardware which also serves to keep my hands attached to the bike. To be honest, at the end of the road, I was shocked that my wheels were still attached. But our support crew met us along the way and some makeshift repairs were done using Ian’s electrical tape (who the hell carries electrical tape while riding a bike?). And we headed back out.

As the day progressed and we hit more downhill. A lot more down hill. With each descent I became a little more confident (or stupid depending on your perspective).  As I was going downhill watching one of my riding partners sail on ahead of me, I thought to myself, this is silly. Either I can crawl across the country at 10 mph and be safe, or I can say fuck it, throw caution to the wind and let it rip. Ten points if you can guess which one I didn’t do.

“Gonna leave this world for a while. Now I’m free………”

Peace, love and midwives,


20 thoughts on “The Grand Experiment

  1. Great video. Threading the needle between the sign and the cone…and then the power and wind rolling off the tanker…Jeez. What a ride. To the road and no wardrobe malfunctions. To keeping the food down and the calories up. To the success of each swallow of food and water. L’chaim.–Mick


  2. Exhilarating riding with you!!
    Now eat up what Mama Rae makes for you like a good little science
    subject. Love to both of you.


  3. This morning as I was riding and thinking of you I thought all I have been hoping for is that you will be safe. Today I wished for your joy, your fun, your sweetest ride ever. Now that I’ve seen the video I think I’m going back to safe… you’ve obviously got the other figured out! And btw, I carry electrical tape on my bike… just a little. Doesn’t everybody??


  4. Awesome video Ray! Thanks for sharing. Also, nice view of the hubby’s rear end which was an unexpected bonus! Keep up the great work, thinking of you guys always.


  5. Thanks for the video Ray (and blogs & photos & FB posts) — terrifying, excillerating and beautiful all at once!

    I eagerly await all the posts from you & Team Ray, happy to see the smiles on your faces, beautiful scenery, written descriptions of your experiences, and yes, even a bloodied elbow — just to know where & how you’re all faring on this trip-of-a-lifetime.

    Hope you have clear roads ahead!

    Sending love & support,


  6. Watch my husband’s sail. He has had ALS for 12 years. Google “The Hero in Heronemus” on you tube. Let us know if you’d like to sail next year.


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