Music In Our Heads: From ALS Adversity to Inspired Album By Sharon H. Chang

Transcription

1 1 Music In Our Heads: From ALS Adversity to Inspired Album By Sharon H. Chang Jeremy Best had cool parents. His biological dad was a 1960s musician who played Seattle including in session with Jimi Hendrix and Frank Zappa. I remember lying in bed or riding in the car, listening to my parents albums: Elton John, JJ Cale, Fleetwood Mac, Paul McCartney, Jeremy said, I would irritate [them] by constantly drumming on everything. When he was 13 years old Jeremy got a drum set and taught himself to play by listening to hard rock records. But it wasn t until 2009 that he formed his first band with friends, Unmanned Drone, and tried his hand at writing music. After a couple songs took I became very excited about being able to make music, Jeremy remembered, I started to write like crazy. Jeremy at Teen Daze 1990, King Dome; a teen talent competition put on by his parents Unmanned Drone fizzled out but Jeremy kept working under a new name. Jeremy, a U.S. History teacher for 20 years, was particularly compelled by the enduring life story of 19 th century Black revolutionary Dangerfield Newby; a freed slave who courageously and

2 2 determinedly fought to free his family and others but was ultimately killed during a slave rebellion. To venerate this incredible man s legacy and steadfast resolve in the face of insurmountable obstacles, Jeremy made a point to teach students about Newby every year and then as an artist, self-produced two albums under the name Dangerfield Newby: Life in Another Time (2011) and The Global Scheme of Things (2013). Dangerfield Newby (clockwise from top): Jeremy Best, Bobby Heinson, Bill Ibsen, Erik Bishop, James Hoffman, Andrew Baer, and (visiting) Jeremy s son Tristan. Shortly thereafter with the help of good friend and veteran drummer Bill Ibsen, Jeremy decided to pull together a band version of Dangerfield Newby. The newly formed group progressed quickly to the point where they could play live. So there I was, recalled Jeremy fondly, With a functional band and an all around swell life as I look back on it now. At 46 years old he also had a stable and stimulating career as a high school teacher, a strong relationship of 17 years with long-time partner Hallie, a grown up son Tristan, and a nice home.

3 3 Jeremy with long-time partner, Hallie, my hero Jeremy with son Tristan: (left) circa 1991 and (right) all grown up But things were about to take a devastating turn. In spring 2013 Jeremy began to notice a subtle change in his gait; his right leg felt a little funny when he ran. As a long-time athlete he simply chalked it up to recent or old sports injuries. By the end of the summer however, he knew something was wrong. His fears were confirmed on December 4, 2013, when he was officially diagnosed with Amyotrophic Lateral Sclerosis (ALS). ALS is a neurodegenerative disease affecting the brain and spinal cord which results in progressive, continued loss of muscle control throughout the body and eventual death. Also called Lou Gehrig s Disease, ALS was first found in 1869 but wasn t brought to international attention until 1939 when it afflicted and then took the life of well-loved baseball player, Lou

4 4 Gehrig. In summer 2014 the disease again shot to prominence in the global consciousness when the ALS ice bucket challenge took the Internet by storm. Jeremy described getting his diagnosis as a surreal nightmare. It still is. I went from charmed life to a death sentence, he said, You hear about things like this in the world. And then it s you. [It s] hard to wrap your head around. After initial shock Jeremy entered a period of deep depression and mourning. I do feel like part of me died the day they told me I had ALS. Six months later walking was very difficult and dangerous and he became dependent on a wheelchair. Dangerfield Newby pre-show band huddle After my world was turned upside down, reflected Jeremy, The band became almost like therapy. Friends for over 20 years, Bill Ibsen said, Jeremy is a smart, funny guy But the creative side to him was music and even though it came late in his life, it was just as big. Dangerfield Newby played a benefit show at the Columbia City Theater in May 2014 to raise money for a studio recording. [It] was a really special night, recalled Jeremy, The response was tremendous. With funds raised, the band was able to track their newest record Music In Our Heads with producer and engineer Don Farwell at Earwig Studio in Georgetown. Jeremy wrote much of the music for the album before diagnosis. But the making of the album was undeniably shaped by the realities of living with ALS.

5 5 Jeremy recording at Earwig Studio The recording sessions were trying for me. I could only play simple keyboard parts at that point, and singing had become difficult, said Jeremy. It took six guys to get me down the stairs at Earwig. Jeremy credits much of the project s remarkable end success to tremendous support by band-mates and friends. But he also credits a great deal to producer Don Farwell who with only a modicum of communication was able to achieve and even surpass the original vision of the songs. Don explained he was very purposeful and took great care in his approach to the session. He was candid with Dangerfield Newby about logistics. It isn t typical to track lead vocals in the beginning but Don stressed that Jeremy s parts had to be captured in the first days. Indeed Jeremy ended up only being able to attend two sessions. Don also knew sadness might become overbearing. I felt the weight of the project could have easily pulled it down, he said, I wanted to keep it light so during session he treated everyone normally and kept the atmosphere as uplifted as possible with jokes and good humor. This was the most important record I ve ever worked on, said Don Farwell, I realized from the beginning this was Jeremy s legacy and felt enormous responsibility to make it as good as I could. Band members said making the album was bitter, sweet, and life altering all wrapped up in one. Bill Ibsen s initial enthusiasm broke down from emotional overload but the session

6 6 remains near the top of all my experiences. Seeing Jeremy give 100 percent to playing his keyboard and singing when the effects of the disease were starting to really take a toll, said James (Jim) Hoffman, Was inspiring to everyone. Every day in the studio was tragic, beautiful, magical, and wrenching, said Erik Bishop, None of us wanted the recording to end because we all knew that there would not be a next time, a next album. I gained more than I ever could have hoped to by simply meeting Jeremy Best, said Bobby Heinson, Dangerfield Newby is now a band of brothers, forever connected. By the album s CD release show November 2014 at the Youngstown Cultural Arts Center, Jeremy couldn t play music or sing lead anymore but he saved his voice the entire day so he could MC the concert. Jeremy, MC, at the CD release for Music in Our Heads In the early stages of ALS Jeremy questioned whether he d be able to tolerate the severe immobility of later stages. But over twelve months later he has reached close to full paralysis and wheelchair confinement, and his outlook has changed. He said he s emerged from mourning, mostly avoided wallowing in self-pity, and been able to maintain perspective. His friends and family have rallied behind him impressively. His relationships are deeper and more meaningful now. Although the disease is highly unpredictable, it now appears that hopes for a slow progression have been dashed and doctors have told Jeremy

7 7 he has about a year left to live. Still Jeremy said despite occasional moments of weakness he s navigating the emotional minefield in a serene fashion ; appreciating all moments from mundane to awesome; considering how he s made a positive difference during his life. When I first told everyone about my diagnosis I asked them to channel their grief into reflection and use it as a catalyst for positive change in their life, he said, It has been immensely gratifying to see many do just that. In this way maybe the net positives prevail. And perhaps Jeremy s journey and reflections are no more beautifully and poignantly captured in time than by Dangerfield Newby and Music in Our Heads; the heart, soul and passion he will leave behind as he now prepares to face mortality and say goodbye. Unfortunately what should have been a promising debut album for the band becomes our only official project, Jeremy contemplated sadly, I can t help but think that without my setback, we could have gone on to make more good music. But at the same time what you hear on the album represents my last performance as Dangerfield Newby, he noted with sage wisdom, and that is what makes Music in Our Heads so special. As absurd as it may sound, As absurd as it may be, We ascend into the clouds As we fall back to the sea. Everybody talks. No one lifts a finger. Everybody rush. I just wanna linger "Everybody talks" from Music In Our Heads by Dangerfield Newby

8 Note: Jeremy s testimonial for this piece was given March 2015 by typing with his eyes as it had become extremely difficult for him to communicate verbally. We are so grateful that he was able to convey his own story in his own words before he completely lost the ability to do so.