Ice Bucket Challenge Progress

 

Spotlight Miles McConnell and Dubie Breen
Life is Sweet

“Everybody needs beauty as well as bread, places to play in and pray in, where Nature may heal and cheer and give strength to body and soul alike.” ― John Muir
 

From his earliest childhood memories growing up in Marin county, Miles McConnell was always outside doing something.  “I have always had an intense connection with nature,” said Miles.  “Whether it was ambling along the Muir Trail on a backpacking adventure, descending a curvy hill on my road bike, or any experience in between, I felt most at home playing in the great outdoors.”

Though they both grew up in Marin County and attended schools that were close to each other, Miles didn’t meet Dubie Breen until they were in their late 20’s.  It happened when Miles was living in San Francisco, running his contracting business, and Dubie was a realtor. “My best friend called on a Sunday afternoon and told me I had to come to Marin and meet the realtor that was holding an open house up the street from him.” Miles reminisces, “An hour later I first laid eyes on my future wife.  We married four years later in 1999.”

Miles and Dubie at their wedding after-party, 1999

Miles and Dubie completed their family by adopting two children from Russian hospitals. First, Spencer in 2002 and then Jay in 2004. “Family has always been the most important part of our lives,” said Dubie.

Being such an active person, Miles noticed a change in his coordination right away when he was on one of his outdoor adventures. “I felt my first symptom of things to come on a day of backcountry skiing off of Carson Pass in April of 2014,” shared Miles. “I wasn't linking turns like I was accustomed to, and wrote it off as a bad day.  When I sprained my ankle in September running (on our first day of a week in Hawaii!), I realized that something wasn't right.  By February of 2015 I had been told that I had ALS. I was only 49 years old.”

“When he was first diagnosed, he was able to still work, but he was devastated” said Dubie. “I was still working on a challenging construction project, and was able to keep it together during the day,” shared Miles. “But I would dissolve into tears in Dubie's arms at night.”

Together, Miles and Dubie decided that this news wasn’t going stop them from doing the things they loved together. Before Miles received his diagnosis, the family went on many adventures together and are continuing that tradition now, while navigating their way around ALS. Dubie says, “We are all surviving and thriving and, so far, dodging the curve balls by finding other ways in which we can do and be.”

One way they have thrived is through participation in the Golden West Chapter's community outreach events. Initially, Miles and Dubie created Team (s)Miles for the Sonoma County Walk to Defeat ALS, and participated for two years. They both encourage anyone facing ALS to join a local Walk to Defeat ALS near them. Miles has always been passionate about cycling, so when he heard about the Napa Valley Ride to Defeat ALS and Walk, he committed to participate every year. This will be the fourth year that Miles and his family are participating in the Napa Valley Ride with Team (s) Miles and the second year that he has served on the planning committee.

“ALS is an incredibly challenging disease, taking away abilities that we all take for granted,” said Miles.  “I strive to remain focused on all that I can still experience and achieve, as opposed to mourning what I've lost.  As a result, I'm leading a very happy life in this new chapter.”

In 2017, riding a road bike became too difficult for Miles with the progression of the disease. Upon learning of this, longtime Co-Chair of the Napa Valley Ride, Matt Chaney, who himself has been living with ALS since 2001, lent Miles his recumbent trike. In 2018, Matt went one step further and suggested that Miles take on his position as Co-Chair as well! Wholeheartedly, Miles agreed to accept the role.
Miles also decided that he wanted to show the world that a difficult diagnosis doesn't have to mean the end of an adventurous life. Recently, he took that sense of community and “Never Give Up” spirit to Colorado to participate in another ALS ride, where he rode for three days, with his sister and dear friends, in support of The ALS Association Golden West Chapter. “Biking and community is a winning combination,” shared Miles.

“Being able to ride alongside Miles, his sister Jane, and friend Bill, was a life-changing experience for me,” said Cliff Whitlock, Director for Team Challenge ALS. “We rode, we talked, and we soaked up all the natural beauty that comes along with this incredible sport.  I think for most people who get an opportunity to interact with Miles, they come away with a sense of purpose. He is a true testament of what we can do when given a tough hand in life.”NVR18 Team Week Message A - Miles' VideoMiles remains closely bound to his extended family, old friends and new friends. He is thankful for the web of caring people and the extensive network of support. At the pinnacle of that support is Miles’ wife, Dubie and his children, who are now both active teenagers. “She has been my main source of strength throughout this journey, along with my children, my parents and siblings, my friends, and all of the caring people I've met along the way,” shared Miles.

Miles understands that every person with ALS has a unique sequence of the disease progression. “We all share the experience of ‘new normal’ where a previously simple task becomes difficult or impossible,” shared Miles. “In hindsight, the process of coping with a life changing diagnosis was broken down into distinct phases: shock and fear, then anger, then overwhelming grief.” He has found that mindfulness meditation, which he practices every day, has been invaluable and is something he recommends for everyone.

“Miles is happier now than ever before,” Dubie states, “You can still live a full life when dealt a hand that is considered pretty crappy. We have amazing friends and family who help with chores, dinners, errands and if we didn't have that life would be much more difficult for all of us.”

“I can spend a day tinkering with my latest innovation for making my daily activities or adventures easier, go for a ride on my recumbent trike (the gift from Matt Chaney), or sit out back and meditate,” said Miles. “I miss the mobility I so enjoyed all of those years, but instead of focusing on what I've lost, choose to focus on all of the opportunities that await.”

Miles adds, “Life is full of joy and uncertainty.  It's easy to get caught up in regretting what did or didn't happen in the past, or fretting about what may happen in the future.  But the present is what's really important, and making the most out of the cards you're dealt.  Living with ALS has reinforced this concept for me. I'm incredibly lucky to have my wife's support through this journey. Dubie provides me total freedom in my day to day activities.   Life is sweet, and I intend to make the most of what's left!”

All of us at the Golden West Chapter, are humbled by the grace and dignity that Miles and Dubie demonstrate and we are grateful for their leadership in fundraising and raising awareness.