Hope Full

ALS can’t stop Chris Hobler ’87 from reaching out

by H. Jay Burns

Oh, what a disease it is.

You probably know that the famous baseball player Lou Gehrig had it. He’s the one who gave 61,808 fans at Yankee Stadium the best farewell ever: “Today I consider myself the luckiest man on the face of the Earth.”

Hold those optimistic words, hold that picture of Gehrig from July 4, 1939 cap in hand, standing erect at the microphone. Now, name the disease for Gehrig, a rock of a man who’s in the Hall of Fame for playing running, hitting, throwing, sliding, leaping in 2,130 consecutive baseball games.

That’s all you really want to know about Lou Gehrig’s Disease. You don’t want to know how the disease kills,

Chris Hobler and son Aiden, 15 months ago, in October 2002

by destroying motor neurons in the spine and brain. How it doesn’t rob the brain of its infinite ability to think, dream, or hope. How instead it plays a meaner trick: preventing the brain from telling the body to swing a bat, or grab a beer from the fridge, or, ultimately, swallow your spit.

“If the public had seen what Lou Gehrig’s Disease did to Lou Gehrig, I think we would have a cure by now,” Chris Hobler ’87 says. “As my neurologist said, ‘ALS is the most basic, all-encompassing, and devastating of all human diseases.’”

Hobler didn’t speak those words. Now entering his fourth year with ALS, amyotrophic lateral sclerosis, Hobler cannot talk or walk anymore. He shares his ideas using Dasher software that allows his eyes to select and “type” words on a computer screen.

Sixty thousand people didn’t show up to witness Hobler giving up his passion singing because of ALS. In fact, there was no one around one day last summer when Hobler, who uses a wheelchair, was watching TV with his 4-year-old son, Aiden.

“I wanted him to come and sit on my lap, but my wife was not around, ” Hobler writes from his home in St. Louis. His condition had worsened, “and for the first time I was unable, through any means, to communicate with my son. I just wanted to give him a hug. That was hard to handle.”

Hard to handle, but not impossible. Not for someone with hope. And that’s the message Hobler hopes to share as he battles his way into the later stages of ALS.

Since his 2001 diagnosis, Hobler and his family have founded ALS Hope: The Chris Hobler-James Maritz Foundation, www.alshope.org. It’s named for Hobler and his grandfather, who died of ALS in 1981. (Ten percent of ALS patients have had someone else in their family similarly afflicted.) The foundation has made grants totaling more than $2.5 million, including support for the ALS Hope Drug Discovery Center in Cambridge, Mass.

An activist foundation, ALS Hope “invests in finding treatments now,” says Mike Schroeder, ALS Hope executive director.

Four years ago, Hobler was living the rock life, based in New Hampshire and touring the nation with his band, Sonic Joyride, in a renovated school bus. The group had become something of an indie touring sensation by playing gigs at decidedly un-rock locales, like at the World’s Largest Ball of Twine in Cawker City, Kan., or the World’s Largest Bug, outside Providence, R.I. The hi-jinks attracted the attention of MTV, CNN, and Billboard, but it was their musical reputation that earned them the chance to open for the Spin Doctors, among others.

That life ended in late 2000. “One day, I didn’t feel quite right,” he told the St. Louis Post-Dispatch. He was in the recording studio when his speech started to slur. “No one else could tell, but something wasn’t right.”

The ALS diagnosis came in 2001. Despite the two decades between James Maritz’s death and Hobler’s diagnosis, Hobler faces the same prognosis as his grandfather: progressive loss of physical function, with death probably three to five years from diagnosis.

They call ALS an “orphan” disease, one of about 6,000 that each affects fewer than 200,000 people. Few sufferers means little incentive for the profit-driven pharmaceutical industry to spend millions on a cure. Hobler is trying to bypass this dysfunctional dynamic by funding the ALS Hope Drug Discovery Center, part of the ALS Therapy Development Foundation. “We exist purely to develop treatments for patients living with ALS today,” says TDF director James Allen Heywood.

The therapy Hobler uses today, however, is simply and mostly hope. “Instead of viewing it as a tragedy, I try to view it as an opportunity,” he told the Post-Dispatch. Robbed of his ability to sing and perform music, he nevertheless embraces even harder that part of his life. “Music is a core element of who I am,” he writes. “It is very important that I keep that alive.”

Mostly, he listens to his own music. “Not because I like to hear myself. I use it to exercise that part of my brain. I perform in my head as I listen and actually visualize my fingers moving and my voice working.”

Hobler can communicate using Dasher and speech software (though Aiden and daughter Ella, almost 2, “don’t read yet and have a hard time understanding Daddy’s talking computer”). And new software allows him to compose and mix music for the first time in two years. “I’ve been writing some songs for my kids,” he writes. “I play DJ, and my kids dance like maniacs. It’s a nightly activity in the Hobler household.”

But being “forced to live life in your mind,” as he words it, is a cruel form of segregation. Until he got his new computer software over the summer, he could not communicate at all, having lost the ability to type in June. A good friend, not hearing from Hobler for months, assumed Hobler was trying to distance himself from their friendship.

Other friends, however, have sought him out. Bates friend Emily Buchanan ’89 donated a painting for one of the ALS Hope fundraisers. Classmate John Dimodica did a triathlon to raise money.

“He wasn’t the crazy ringleader at Bates,” Buchanan says. “He was the quiet, strong one talking to the person who felt shy or ill at ease.”

“To be in Hobey’s company is to be included,” says his friend David Walton ’87.

At Bates, he and Hobler played together in The Bedspins and 40 Percent Daves, bands that rocked Wednesday night parties at Pierce House.

“I sang and jumped about with my bass. Hobey played the role of sullen lead guitarist,” Walton remembers. “I tried for the spotlight, but all eyes were on him. People are magnetically drawn to Hobey. He is funny, confident, self-deprecating, mischievous, determined.”

One summer during Bates, Nate Grove ’87 visited Hobler in St. Louis and heard the advice his father gave Chris on the eve of a summer internship: “You want to impress upon these people that you aren’t there simply to be an observer,” Hobler’s father said to his son. “You want to be a contributor.”

The snippet of conversation, Grove says, keeps bobbing back to the surface of his mind. “I came to realize that this was how Chris was raised and how he continues to live his life.”

“I have more true friends than I deserve,” Hobler writes. And his family’s love is stronger than ever. There, too, hope lives and grows. This winter, Hobler and his wife, Jennifer, expect the birth of their third child.

“Happiness, purpose, and contentment come from between your ears, not from circumstances that surround you,” he writes. “I would love nothing more than to see my friends or talk to them or give them a hug and let them know I am OK.”

chris@alshope.org