Few people embody a true zest for life quite like Fred Noble, and even as he struggles with a disease that means an unrelenting and painful decline to death, he is reaching out to inspire others in the eternal quest to find meaning, purpose and happiness.
“You can kill me but you can’t break my spirit, and that’s the way I feel about life,” Noble says in the documentary “The Noble Spirit,” which premieres Wednesday in Hood River. “I’ve done it all,” he says. “I’ve done it all my way and I’m fine with the way this is going.”
After a life of adventure as a traveler, photographer, elite backcountry skier and one of the Gorge’s best known early-era windsurfers, Noble was diagnosed with ALS in 2010. The Noble Spirit is a documentary that follows Noble, now 76, as he struggles with ALS, also known as Lou Gehrig’s Disease, over the past three years. The film is an intimate, heartbreaking and inspiring account of a man who lived on the edge for much of his life — seemingly invincible, seeking adventure around the world and spreading positive energy to those he met along the way — before facing the devastating diagnosis of a rapidly degenerative disease for which there is no cure. In his final chapter, Noble faces his disease, and ultimately his death, as courageously as he did his many adventures in life, and in the documentary he shares this truly raw experience with the world.
“Since 2011, I’ve been working with a film crew to document my experience with ALS in the hopes that I can do even more to help fundraise for research and to help the families of those with this terrible disease,” writes Noble. “My goal is to raise as much money and awareness about ALS as possible, while I have time.”
The Noble Spirit premieres April 9 at the Columbia Center for the Arts (215 Cascade Ave.); doors open at 6 p.m., for food and drinks; the show starts at 7 p.m. Although he can no longer speak, Noble is planning to be at the showing, which in addition to being one of his last social affairs, will be a fundraiser for ALS programs.
A trailer for the film, Noble’s blog, photos from past adventures, information on how to help his cause and more can be found at thenoblespirit.org. A second showing of the film is scheduled for April 27, doors open at 6 p.m., at the Lake Theater in Lake Oswego.
Noble lives in Portland but has spent considerable time in the Gorge. Among other things, he was a founding member of the Columbia Gorge Windsurfing Association and helped establish several windsurfing-friendly state parks on the Oregon side of the Gorge.
Although Noble’s mind remains strong, the disease continues to destroy the motor neurons connecting his brain to his body. He is close to death — a fact he confronts bravely and talks about openly. He is now under 24-hour home care, with assistance from hospice.
“A person becomes eligible to go on hospice once it is determined one has six months or less to live,” he wrote in his blog at the end of 2013. “My choice is to die here at home.
“I am now under 24-hour home care. Hospice is supplemented as an add-on to provide me with in-home emergency care and keep me comfortable right to the end. I have a big box of medications, morphine for pain and a bunch more for breathing, pooping, peeing and other functions. Acupuncture is my go-to medication for comfort and pain relief. I have a myriad of life support equipment so I cannot stray too far from electricity.
“Make no mistake I am fine with the end of life. You know, I have lived a life filled with many adventures and shared experiences with all of you. The adventure continues and I am approaching it with the same conviction, spirit and passion as I had before ALS.
“I am fortunate that I can die in my home in beautiful surroundings built by my daughter and son-in law; they are here three days a week to handle my legal affairs, pay my bills, do maintenance on the house and give me love and moral support. I can no longer swallow food and take all nourishment through a feeding tube.
“My goal is to make it to April 12, 2014, for Ski to Defeat ALS on Mt. Hood, and to finish my documentary.
“All in all I am doing pretty well and visitors are always welcome. I can no longer speak and emails are the only way to communicate.
“Come over any time, but email first: firstname.lastname@example.org
Ski to defeat ALS
Hosted by Mt. Hood Meadows Ski Area, the third-annual Ski to Defeat ALS is a fundraising event that will feature Noble as its honorary chair. In its first year, the event drew close to 300 participants who raised more than $150,000 in the ski-a-thon event to support the Oregon and Washington chapters of the ALS Association. Last year numbers, and donations were higher, and this year the goal is to raise as much or more. Registration for the event closed Friday, but donations and team sponsorship can still be made. For details, visit skitodefeatals.org.