Fine art photographer
San Mateo County, CA
Infected: early 2000s
Diagnosed: 2007
Current health: Disabled after 8 years of frustrating battles with this disease
I knew something was very wrong. I no longer knew what to say, nor could I understand what was happening to me. My once-stable relationship with the world, my family, my art … seemed to dissolve. -Robert Buelteman
Robert Buelteman is a celebrated photographer and native of the San Francisco Bay area, noted for his striking landscapes and his unique “cameraless” technique. This latter technique is a proprietary process using electric current and fiber optic cables to transform and “hand-paint” found nature into distinctive works of art. (See this WIRED magazine article for more on his unique technique.) Buelteman has been a guest of Stanford University’s Jasper Ridge Biological Preserve, the Santa Fe Institute, and the Djerassi Resident Artists Program and his works can be found in public and private collections worldwide including the Yale University Art Gallery, Santa Barbara Museum of Art, the SFO Museum, the Sanchez Art Center, and the offices of Kleiner, Perkins, Caulfield & Byers; Bank of America; Adobe Systems; Stanford University; Xerox; and Nikon.
In 2007, after many misdiagnoses, Buelteman finally learned he was infected with Lyme disease, Rocky Mountain Spotted Fever, Q Fever, and Ehrlichiosis. He has spent the following years battling debilitating symptoms that have greatly impacted his career, his family life, and everyday living. Here he shares reflections on this frustrating experience.
“While I would prefer talking about my lifelong love affair with photography or sharing my favorite essay from Wallace Stegner, I am instead going to break my own rules and focus on telling you about my experience with Lyme. It is not a subject I speak about often or publicly.
“My family moved to Woodside, CA in 1950. From my family home, we could look out on the Santa Cruz Mountains and the deep canyons, redwood groves, and misty ocean-borne fog that cloaked the hills inspired a love of the land that is deep in my heart. It is a magical place.
“As a young child, the great outdoors was my play space. As I grew up and became a nature photographer, I continued to spend much of my time outdoors in the woods, knolls, and open spaces that formed my canvases. I don’t know when I was bitten by the tick that changed my life.
“But in 2007, after a couple years of mysteriously declining health, I knew something was very wrong. I no longer knew what to say, nor could I understand what was happening to me. With the stress that accompanied the near-fatal car crash of my oldest son on his way home for Christmas, I spiraled in. My once-stable relationship with the world, my family, my art, and my dreams seemed to dissolve as I fell ill and seemed unable to find a doctor who could help me.
“Since that year, my public persona has consisted of an uncomfortable mix of the truth and the expedient. The truth was carefully guarded, shared only with caregivers, family, and friends. The expedient was what I created to deal with the rest of the world, in perpetual fear – like many Lyme patients — of having anyone else discover the tremendously disabled person I had become.
“Beginning in 2008, I sometimes couldn’t remember the names of my sons, couldn’t be left home alone, could no longer drive a car, remembered little day-to-day, and couldn’t distinguish between what was happening on the TV and what was happening in real life. I lived in fear I had lost my mind, and, at that time, I had.
“Eventually I did find a Lyme-literate doctor as well as a gifted nutritionist who helped me, but due to unreliable testing and the frustrating delay in finding a doctor who understood my situation, the Borrelia by then had time to take up residence in my central nervous system and damaged my brain.
“After 7 years of being saturated, injected, and infused with every manner of antibiotic, my immune system is severely compromised, leaving me as prey for every passing bug that wouldn’t have stood a chance against my former vital self. Now, still disabled, though free of the infection for nearly 2 years, I have learned the destinations we dream of in health can betray us in sickness, and that in the end, it is the journey that matters.
“My wife Julie also suffers from Lyme disease and I believe that I am the one who passed this dreadful infection to her. Together, we have come to know Lyme as “the Great Taker” – it has taken my strength, my vitality, some of my memories of my prior life, and my passion for work. Most significantly to Julie and I is that Lyme also takes away your ability to care. Even now, we both struggle to regain that all-important quality that makes us human – our ability to care.
“I have heard from a great many well-meaning friends and business associates about the great artists who faced hardship and emerged greater for the challenge — Frida Kahlo, Chuck Close, Toulouse-Lautrec, Monet, and Van Gogh to name just a few. Unfortunately this well-intentioned counsel seldom plays well. When you lack the energy to get out of bed, are not sure when or where you are, and have no recollection of the preceding day, you don’t have to look at Maslow’s hierarchy of needs to know you are in big trouble.
“I have a friend who is not an advocate of any “bucking up” or simple-minded positive thinking. For some 20+ years he has made himself available to me as an advisor and when I fell ill he asked: “What is in your life now that you might never have had were it not for Lyme?” At first, this question also enraged me, but over the years I was able to see that there are a great many qualities I have in my life now that I cherish as the result of this disease. I am more forgiving and compassionate towards others as well as myself, I am less concerned about what others think of me, I am more appreciative of this life of mine exactly how it is, and, in short, I have found new freedom to be.
“There are, of course, things in life that once lost, cannot be recovered. On the other hand, my love of beauty, of nature, of family and friends, and my commitment to a better tomorrow, remain intact and now serve as the motivating forces in my life. For myself, my art expresses that which cannot be said, and on which it is impossible to remain silent. So, in the few lucid hours a day I have, I continue to work on my art so long as I can respond to the call.
“In the end, I consider myself to be among the fortunate people in the world. I have a wonderful family, was raised here on the San Francisco Peninsula — one of the most beautiful places on earth, have a strong community of great friends, and most importantly, I have managed to earn a living making art that is both a joy and is profoundly important to me. And, with the help of too many people to mention tonight, my wife and I have finally emerged from the shadow of a devastating illness after eight years.
“I can only imagine what my life might be like now, had organizations like Bay Area Lyme Foundation succeeded in 2007 in their goal of creating an accurate test for the disease, or if the many doctors I reached out to were better informed about the facts. Now, in leaving the dreams of my youth behind, I have found new freedom. By chasing something I cannot define, anticipate or manage into existence through my art, I have found fulfillment. In surrendering to my incapacity while pursuing my creative practice as best I can, I see glimpses of my work, my life and my world as parts of a larger whole, connected through my journey. “
See more of Robert’s work at Buelteman.com, on facebook, in this compelling interview by Bay Nature reflecting on the publication of his book Unseen Peninsula, or by contacting one of the these galleries.
Thank you for sharing. I have a few friends with this disease. I am glad you and your wife are better! Keep being strong.
CBD oil (no THC) was my husbands cure. 3000mg in 1 oz bottle.
Very concentrated but, for him, completely effective. I think he paid $149.00 for it online. He is now almost completely pain free and has feeling in his hands again. He had to look at a glass to make sure his hand had a hold of it, he couldn’t feel anything. He can now do squats and raise his arms up over his head. And, thank God, no more pain!!!!!!!
Yes, CBD is great for pain but doesn’t kill the borrelia as far as I know – wishing you both health!
Hi Rob and Julie ❤️ I am a friend from the very distant past but think of you often and fondly. I would love to connect with you if possible. I live in Mty County but travel via the Bay Area often to visit my eldest daughter who is at Sonoma State University. I would love to connect. Kim
Robert, thank you for sharing your personal experience. Attempting to manage this emotionally and physically disabling disease is overwhelming. I appreciate our conversation and the help you offered to me. I fear I have Lyme and I am searching for help and a doctor that can offer the blood test. I understand that a traumatic occurrence can set the disease off in our bodies and that with a lower immune system it will take over. I am grateful for our friendship and all the beauty you create. Blessings to you and your loving family. With Love & Friendship, Deborah
Hello, I just read your story and thank you. I have late stage Lyme and was looking for hope. My most disabling symptom is derealization where I’m not myself at all — it’s like I’m someone else, my whole personality is gone. I was wondering if you really did get better? I couldn’t tell from your story. I hope you and your wife have. Thank you, Gabrielle.
This story is such a moving, truthful, stirring recital of what Lyme has taken from your life…and given to your life. May you be blessed and healthy……healthy and blesses…..