One of the joys of music is the extraordinary people it brings into our lives.
Jeremy Waggoner was typical of many young men in their twenties. Intelligent, passionate, and angered by injustice, he had a great sense of humor and loved sports. He wore dreadlocks, sported several tattoos, and enjoyed going to hear live music. A poet, songwriter and musician, he had a Facebook page and a band page on MySpace. He loved rap and reggae, jazz and blues, Patron tequila and India Pale Ale.
Wayne, Ian, Della, & Jeremy Waggoner with Ziggy Marley
What was not so typical was the fact that Jeremy lived with a form of spinal muscular atrophy (SMA), a term referring to a group of relatively common “rare” congenital diseases of the motor neurons (one in 6000 babies are affected) causing progressive muscle weakness and atrophy.The doctors told the Waggoners that their son wouldn’t live beyond the age of two.
"I am human just like you,
I contribute from
Different point of view.
I’ve got wheels, you have feet
They both do the same,
They make life sweet.”~from “Equal Humanity” by Jeremy Waggoner
We first met Jeremy and his remarkable family—father Wayne, mom Della, and brother Ian—at the Texas Jazz Festival in Corpus Christi. Keeping in touch over the years, we watched their relentless activism fighting bureaucracy and apathy to ensure that Jeremy enjoyed the best quality of life possible. They also worked constantly to raise awareness of the issues facing families struggling with chronic disease. Jeremy’s band Yesterday’s Fish frequently performing for fundraisers benefitting support organizations like Families of SMA.
"He lives his life
Like a small pen knife,
Sharpening those around
To keep up the fight.”~from “The Pain Within” by Jeremy Waggoner
One of our fondest memories is of the night Jeremy sat in with us at Casbeers at the Church in May, 2010. He played slide guitar as we all played his original song “Nick-Knack Blues,” and violinist Jonathan Raveneau performed a rap version of Jeremy’s song “Monday Morning Feeling.” For all who were there, it was a magical night.
Jeremy at Casbeers
Early in the morning of this last January 30th, less than a week short of his 29th birthday, Jeremy passed away peacefully in his sleep. “Although it happened suddenly,” his father Wayne wrote, “it was not unexpected. He just ran out of energy. He was still writing, playing music and enjoying life right up till the end, despite all his pain.”
Throughout his lifetime, in the wake of severe physical challenges, frequent surgeries and procedures, and unrelenting pain, Jeremy managed to inspire all who came in contact with him. “He was the strongest little man I have ever known,” said his mother Della. “There was no self-pity or anger as to ‘Why Me?’ He simply accepted who he was….He suffered great physical pain, yet he did not complain.”
"I’ve got some advice
To give to you
No matter what happens
Don’t let it give you the blues
Live your live to the fullest
Each and every day
Go out and have some fun
Along the way”~from “Nick-Knack Blues” by Jeremy Waggoner
Jeremy’s unique voice is still with us in Walk in My Shoes, a poetry collection he authored along with bandmate Jaydon Williams. His father will send a copy to anyone who wants, especially if they’d be willing to donate to www.curesma.org. (Click on the “donate” button at top right. Under “Honor or Memorial Information,” fill in Jeremy Waggoner. Where it calls for family information, fill in Wayne & Fidela Waggoner, 1321 Billington Lane, Roseville Ca 95747. If you’d like a copy of Walk In My Shoes, you can email Jeremy’s father Wayne Waggoner at way_wag[at]msn.com.)
We are blessed and grateful to have known Jeremy and his family. They continue to teach us about love and family, and they inspire us to work for a more just and compassionate system to support families dealing with chronic illness and other challenges.
"As you probably know
This song is about me
I wrote it for the thousands
That have this disease
Let me give you some advice
Listen to your heart ‘cause if you Do
You’ll never fall apart
I’ve got one more thing to say
Before I go I’m 23 years of age
Going on 24
I wake up every morning
With a smile on my face
Everyone that helps me
I really appreciate
I love my life
Each and every day
I’ll love it until the end
Until my dues are paid
This is My Monday Feeling and
This is how you beat SMA”~from “My Monday Feeling” by Jeremy Waggoner