TOUCHED BY LYME: Jesse Colin Young says life with Lyme “cuts like a knife”
In 1995, fire erupted at California’s Point Reyes National Seashore, a place of wild beauty about 30 miles north of San Francisco. Fed by hot, dry winds, the conflagration scorched more than 12,000 acres of brush and woods.
Forty-five buildings went up in flames, including the home of legendary singer/songwriter Jesse Colin Young and his family.
Young didn’t realize it at the time, but the fire and its aftermath would mark a significant turning point in his life. It set in motion forces that pulled him into a downward spiral of poor health and emotional turmoil, before leading to a surprise diagnosis of neurological Lyme disease.
He has endeavored to capture what happened in a song he calls “Lymelife.” In it, he distills many years of experience into 30 lines of lyrics.
“Get Together”
He and his band the Youngbloods burst into musical prominence during the 1960s with their hit song “Get Together.” Just about anybody who lived through that era probably recalls its refrain:
Come on, people now. Smile on your brother.
Everybody get together, try to love one another right now.
Having grown up in New York, Young moved to Point Reyes in 1967 because its natural splendor entranced him. He reveled in its solitude and stunning landscape.
Lymelife
“That’s where my journey began,” Young said in a recent telephone interview. “Hiking in those woods and riding my motorcycle out to the beach. Coming from the lower east side of New York, I felt like I had died and gone to heaven. That’s what the beginning of the song Lymelife is about. I had this powerful, beautiful experience of nature…and there were seals that lived right there on the beach at Limontour Spit, and deer running all over, great herds of them, all over the place. I loved it.”
As he sings in Lymelife:
I loved the woods and the wildest places
I made trails that had left no traces.
I followed them to the ocean roar
Who on earth could have asked for more?
I spoke with seals and the white deer running
Hawks and owls and a cougar cunning
I breathed with dolphins as they swam by
A blood red sunset in my eye.
During almost 30 years of delighting in the natural world of Point Reyes, Young often pulled ticks off his body and thought nothing of it. Then his house burned down.
A crushing blow
“It was a crushing blow for me. I had fallen in love with that area, I made music about it, had been inspired by it. I think that’s what brought out the Lyme, that the blow of that fire took me down so far emotionally and eventually physically. However long I had been carrying that Lyme disease in my body, it decided it was time to take over.”
But he wouldn’t realize that for many years. After the fire, he and his wife moved to Hawaii to live in a house on a small coffee plantation.
Soon, Young says, “I thought I was going crazy. I had a lot of anxiety, panic attacks, and strange symptoms of having difficulty swallowing. All these things they just assumed were psychosomatic, because I’d been through the traumatic experience of losing my house like that. The only thing doctors could think of was to put me on anti-depressants.”
Young suffered for years from cognitive impairment, depression, mood swings, and various pains—not knowing what was really wrong, getting little relief from any treatment his doctors offered.
There’s so much to learn, tell me where do I turn?
Now that I’ve lost my health, my sanity?
I’m angry, I’m sad.
I’m frightened, I’m mad
I’m feeling the bite of inhumanity
“I think that if I had not married such a loving and strong woman as my wife Connie that my family would have blown apart.”
Another turn of fate
Then, in the mid-2000s, Young says, his wife went to a family funeral in Ohio. There she saw her cousin, Barbara Buchman, who happens to be the executive director of the International Lyme and Associated Diseases Society (ILADS).
Buchman gave her cousin a copy of an ILADS brochure about Lyme and psychiatric symptoms.
“So the brochure ended up on our kitchen counter. (Whether there were angels involved, I don’t know.) I read it and thought: this is my biography.”
He called Buchman, who suggested that he see Dr. Richard Horowitz, in Hyde Park, New York. Horowitz diagnosed Young with Lyme disease and prescribed antibiotics.
Regaining sanity
“And that began my journey to regain my sanity. That, and giving up drinking. Because, when you don’t know what’s happening, you medicate with whatever tools are at hand. And alcohol became another trap for me. So between my sobriety and entering antibiotic treatment with Dr. Horowitz, I began to see my mind come back to me.”
Young said he’s not particularly fond of media interviews, but he did a few that mentioned Lyme disease. As a result, he started receiving emails from people talking about their own Lyme struggles. Hearing their stories motivated him to write the song Lymelife.
And when I wake tomorrow morning, who will I be?
A man who’s strong and willing, or lost and angry?
Someone’s cherished lover, or my lover’s enemy?
“This song is my gift”
“As long as the infectious disease doctors in America and the CDC deny the existence of chronic Lyme, those who have been suffering for decades will not get proper treatment. That’s what I’m trying to help with. This song is my gift. It’s what I do best.”
Young now lives in South Carolina, his wife’s home state. He’s working on an album of songs which won’t all be about Lyme disease. However, since he says “I seem to be slow at writing and recording,” he has chosen to make “Lymelife” available as a YouTube video.
Visceral power
It’s a simple production, showing Young playing his guitar while perched on the arm of what appears to be his living room couch. A dog dozes at his side. The video was made without a band, studio, or producer. Yet the song exerts a visceral power—the sense that Young is clearly singing from the depths of personal anguish.
“It was important for me to show the pain and confusion and loss of cognitive abilities—and the loss of your sense of who you are. It’s a cry for help for our community, a cry for recognition.”
Ah, this Lymelife, it cuts like a dull knife.
Ah, this Lymelife, tell me where is my sweet life?
Ah, this Lymelife, the shadow left is me.
You can watch the Lymelife video here:
More information about Young’s music at jessecolinyoung.com.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
So sorry for all the pain you suffer. I’ve been there for 11 horrible years. Finally got permanent cure without endless antibiotics and the havoc they wreak. Check out International BioCare Hospital, Tijuana. All the best.
My son was diagnosed with late stage neuropsychiatric Lyme disease after many years of multiple doctors appointments and mystery behaviors.. We also regularly camped at Point Reyes, Yosemite and he he often hung out in Aptos and Santa Cruz as well as Orange County, New York! Nothing prepared us for the devastation of Lyme Disease and the three year battle we are still in. Please continue to sing your songs. Many people are misdiagnosed. Please use your gift to help others. We all need those like you with a public voice!
Jesse, thank you for sharing your painful story of losing your home and your lyme disease coming out of hiding hitting you hard.
That was a powerful song. You are a gifted writer and singer.
I sang your song, smile on your brother during our era of growing up and older together.
Wishing you the best still on your journey, but you were fortunate that your wife’s cousin was an insider to ilads lyme treatments!
Thanks for your legacy of this lyme song for our activism. By chance, are you planning on going to the DC rally, protest, and lyme memorial in DC May 19-20??
I’m going and hoping to meet many I have corresponded with for the last 12 yrs. after my correct diagnosis; 35 yrs. too late!!
Best wishes, hugs/prayers always,
Bettyg, Iowa activist
82 yrs. of chronic lyme disease with my late husband, Jack, whose brain autopsy 11.22.15 showed worldwide history!
NEURO BORRELIOSIS & LEWY BODY DEMENTIA causing violent hallucinations like Robin Williams had.
His case has been written up with ME being the 1st co-author over 3 medical folks involved; in final editing stages to be submitted by Dr. Alan MacDonald.
WISH us luck in getting it published!!
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I feel like this song was written for me. When you get Lyme its easy to feel all alone at times. I know that all of us Lymies can relate to just about every word in this song. I hope that this song brings awareness to our county and the world about Lyme. There are so many stories to be told. With over 300,000 new cases a year, you would think more studies would be done. We need help from our medical community and politicians! We need Lyme Awareness! We need to fight! Until we have the answers and help needed to combat this horrible disease.
God bless and thank you Jesse for the song. It’s a start.
Shelly Willis
From Ohio
I am moved to tears. It’s about the beauty of nature and the lingering cruel affects of a horrible disease, “Lyme life cuts like a dull knife, the shadow left is me”
I caught Lyme in the same area and was undiagnosed for 12 years, because nobody knew we had Lyme in California. In 2012, I finally had a proper diagnosis, but it was possibly too late as my body is not responding to treatments.
Your song touches me very deeply. Thank you for sharing our pain with the world. We’ll keep fighting!
Will pray for you and yours. I have two siblings that have chronic Lyme disease. I have been caretaker to one sister for 12 years. I had to leave my family and move with my sister to Kansas for treatment. Other doctors look at us like we are crazy. She almost died physically twice….emotionally a little more everyday. It is the worst most confusing and hard to treat disease. Hang tough and I will pray for you and you family and caretakers
It’s hard to put into words,your song has a merrit that will touch the inner soul who listen to it go all the way with recording it full orchestra behind you violin cholo and harmonica l can here now just beautiful may your spirit stay strong and live long best wishes Tony
I too have neurological Lyme disease. I had it for 38 yrs before diagnosis and am still fighting it. The main thing to remember is that life is sweet, especially when you have escaped the trap of death (I narrowly did). You have to be thankful for all the little things and not be bitter. = )
Still with you!
Peace.