The following chapter has been excerpted from ‘Ice Bucket Challenge: Pete Frates and the Fight against ALS’ by Casey Sherman and Dave Wedge
Pete was soon placed on an experimental “compassionate use drug,” an investigative drug that was outside of a clinical trial. In order to receive it, Pete’s doctors had to contact the pharmaceutical company while also submitting an application to the FDA. They also had to agree that their patient, Pete Frates, had no other options. The drug was in a phase III trial.
It was hope in a bottle for the ALS community but it did nothing to slow the progression of the fast-moving disease.
Pete would have to search for his own remedies. He spent countless hours reading articles, white papers, medical journals and other materials for information about ALS. It was all-consuming. One place his research led him to was medicinal marijuana. Pete had smoked weed in the past but it was not high on his list of vices. He enjoyed his Budweisers much more than a joint, but he also was not judgmental and was fine with people enjoying a bong hit or two.
He learned that medicinal marijuana could have some benefits to ALS patients. Studies have shown marijuana can prolong the survival of brain neurons while the plant’s active ingredient, THC, has antioxidative, anti-inflammatory and other neuroprotective effects that can help ALS patients. Pete knew the science was debatable but he also kne he had nothing to lose and needed something, anything, to help him cope with the rapid, painful changes to his body. He had been suffering severe anxiety and muscle spasms, which he hoped the pot could help alleviate.
He rang up a friend and asked him if he could bake a batch of edibles for Pete to try. The friend was happy to oblige and baked a dozen brownies for him to eat. Pete did not want to try it alone. There was only one person he trusted enough to sample them with him—his brother Andrew.
Andrew had also quit his job to be full-time caregiver for his big brother. He had put his own future on hold for the brother he had idolized growing up. Pete’s dreams now became Andrew’s dreams. They both wanted Pete to get better and both strived to find a cure for ALS. Pete and Julie now lived in a handicapped-accessible in-law apartment that was built as an addition onto the Frates’ Beverly home. All the materials used to build the two-bedroom addition were donated by area businesses, as was much of the labor.
One morning they woke up and Julie had left for the day. Nancy and John also were not home so Andrew and Pete had the entire house to themselves.
Holding the bag of brownies up, Pete said to his brother: “Dude, you want to do these?”
“If you’re doing it, I’m definitely doing it,” Andrew replied.
There was a sense of mischievousness about the whole thing. Their parents were not home and they were about to do something that was against the rules.
They each ate a whole brownie but felt nothing after 15 minutes. Twenty minutes, 25 minutes went by and still nothing. They considered eating another, but then, suddenly, the brownies kicked in.
The brothers started giggling at nothing. They felt warm and happy. Pete was relaxed and felt fantastic, the woes of his body’s deterioration faded away.
Pete made his way to the stereo and turned on one of his favorites: Iron Maiden. Andrew did not love heavy metal like his brother, but the vibe of the moment was infectious. Pete banged his head along with the thrashing sounds of Nicko McBrain, Steve Harris, Dave Murray and Adrian Smith. He wailed along, singing every word along with vocalist Bruce Dickinson, hoisting his hands to the sky in time to the triumphant lyrics.
“Run, live to fly, fly to live, do or die,” Pete shouted along. “Won’t you run, live to fly, fly to live, Aces high!”
Andrew had tears in his eyes and his stomach knotted from laughing so hard as they thrashed around the living room. Soon, Julie arrived back home.
“Dude, Julie’s home. Chill,” Pete said. Like misbehaving little boys, they assumed seats on the couch, trying to hold back the giggles.
But that didn’t last long. They began chuckling at each other.
Julie watched the commotion with a raised eyebrow.
“What the hell is wrong with you two?” she asked. “You guys are up to no good.”
She looked over toward the counter and noticed the bag of brownies.
“Oh my god, you guys are stoned off your asses!” she said, joining them in laughter.
They both giggled in agreement and Pete went back to the stereo and turned Iron Maiden back on. Julie’s tastes were much more subdued, but like Andrew, she too embraced Pete’s heavier side and thrashed along with them.
Half of all proceeds from Ice Bucket Challenge: Pete Frates and the Fight against ALS go directly to the Frates family. Meet Pete and the authors for a book signing this Thursday, Sept. 7 at 1pm at the Prudential Center Barnes & Noble.