Conquering Vasculitis with Love
Ernesto exudes warmth. When I called him for the first time after exchanging a handful of emails, he greeted me like an old friend. He speaks easily of love and peace and has a spirit bent towards hope. It is this—his hopeful spirit—that has helped carry him through his vasculitis journey.
In August 2022, Ernesto thought he was having a stroke. His wife, Nancy, rushed him to the hospital where he waited in the emergency room for hours. He was in his early 60s, newly retired from 30 years of service as a firefighter, and had recently returned to Tucson, AZ, after nearly 40 years in San Francisco, CA. Hours after arriving at the hospital, Ernesto was discharged, the doctors dismissing his alarming symptoms as aspergillosis, an infection caused by mold.
But the next day, it got worse. A relentless headache took over. He couldn’t walk straight. And his memory dropped: He recognized his family members but couldn’t remember their names. His wife rushed him to another hospital. This time, they diagnosed him with septic meningitis, discharged him, and referred him to another local hospital. He ended up staying in that hospital for five weeks, being subjected, he said, to “every test you can imagine.”
By November, his mysterious symptoms finally had a clear diagnosis: vasculitis of the brain.
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At times in the hospital, Ernesto felt foreign to himself. He remembers lying in bed, lost in uncertainty: What was happening to him? What was going to happen next? Throughout the night, he’d be awakened by nurses checking his vital signs or drawing blood. Some nights, he was plagued by wild hallucinations. He felt the heaviness of waiting for answers, like time stood still.
By the end of his time in the hospital, he had to relearn to walk. He started by pacing his room, then the hallways. Eventually, the nurses would roll him outside in his wheelchair and let him practice walking outside the confines of the hospital’s walls. He remembers his final “test” before being discharged: after a seemingly endless walk around the hospital, he had to brush his teeth while balancing on one foot. He laughed retelling the story: “I thought, Who the heck brushes their teeth on one leg? But I nailed it!”
Throughout his hospital stay, Ernesto was grateful for the presence and support of his family. “My better half, Nancy, was always there for me,” he said. She would communicate with his team of doctors and bring him homemade food. Ernesto, who’s a self-described foodie, wasn’t quite into the hospital cuisine. “You know what I’m talking about,” he said, laughing. His grown children, who still live in San Francisco, came to visit as often as they could. His son Michael and Michael’s fiancée Lindsey would bring him cappuccinos and fresh scones from his favorite cafe. Lindsey is a nurse at Stanford Hospital and was instrumental in getting him discharged from the hospital. His daughter Harmony would infuse his room with her positive energy and make him laugh. “She would sit with me by the window so I could look outside and talk.”
While he wouldn’t wish this experience upon anyone, he discovered how extensive and caring his support system truly is. “I could not have gone through this without them…I am truly grateful for these people who watch over me.”
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The revelation Ernesto has had since his diagnosis is that vasculitis is not something to fight or deny; he must embrace it and continue to live the fullest life he can. “One of the first lessons that came to me,” he said, “is the need for my acceptance. I accept that my illness is rare and will likely remain with me for the rest of my life. I still don’t know what caused my vasculitis, but I have come to accept it.”
In fact, in embracing his new normal, he has realized his own strength. “I have learned to persevere,” he said. “This may sound corny, but I am a warrior. And a true warrior conquers with love.”
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To carry him through the ups and downs of vasculitis, Ernesto relies on meditation, music, and affirmations. He listens to “just about everything, from R&B to blues, jazz, classical, and rock.” His go-to artists include Stevie Wonder, Jon Batiste, and Carlos Santana, especially his song “Love, Devotion & Surrender.”
Every day, he repeats an intentional mantra: “My body already knows how to heal itself…I deserve this time to heal. My healing is already in progress.”
He has seen the power of these practices in this daily life. “Not only do they get me through my illness,” he says, “but they help me get through life with peace of mind, compassion, and kindness.”
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Today, Ernesto moves through his life with hope: “I truly believe there is something or somebody or a higher power looking out for us. I have had many trials and tribulations throughout my life and I have never given up hope.”
He continues to get busy living. This fall, he’ll travel back to the Bay Area for his son Michael’s wedding and he joyfully anticipates nourishing time spent with his daughter and her partner. “And just like today, tomorrow, and each day after,” he said, “I look forward to spending days with my Nancy.”
“It ain’t easy,” he says about living with vasculitis. But he has found support and connection through the Vasculitis Foundation, and feels sustained by the love of his family. “Stay on the path,” he reminds fellow vasculitis warriors. And soldier on “with love.”
Written by Ashley Asti
