When Julie Hare was diagnosed with multiple sclerosis, she and her husband Steve asked the same question: What is it?
While both of them had heard of MS, neither of them knew exactly what the disease entailed.
“MS is such a nebulous disease,” Steve said. “In every person, it takes different shapes. It’s not consistent in any two people.”
For the Hares, Julie’s diagnosis couldn’t have come at a worse time. Budget cuts had recently caused both husband and wife to lose their jobs. Julie had worked as a local schoolteacher, and Steve had a management position at a Napa Valley winery.
With everything coming apart nearly simultaneously, the Hares knew their only way out was “up.”
“We figured we had to do something,” Steve said.
It was nearly a century ago when Steve’s grandfather, Jessie Howell, put on a pair of boxing gloves outside of a home in San Francisco and playfully struck a pose as his wife, Henrietta, stifled laughter in the background.
The photo of that moment was kept in the family, and a copy eventually made its way into a frame on Steve and Julie’s family room wall.
Jobless and dealing with the diagnosis of MS, the Hares found inspiration in the pugilistic image.
Putting to work Steve’s experience in the wine industry and Julie’s passion for helping those with multiple sclerosis, the couple created Counter Punch Wines — a winery that donates a portion of its profits to organizations that help “counter punch” the effects of MS. The photo of Jessie and Henrietta would serve as the art for their wine label.
Counter Punch Wines officially debuted in September.
The winery sources its chardonnay grapes from Santa Barbara County. The grapes for its cabernet sauvignon come from the Rutherford region in Napa Valley.
The Hares already have donated their wine for MS-related events. When the company becomes profitable, the owners plan to donate 10 percent of profits to organizations that help people with multiple sclerosis.
A disease of the central nervous system, MS occurs when the protective covering that surrounds the nerves becomes damaged and disrupts the normal flow of nerve impulses, according to the Multiple Sclerosis Association of America.
With multiple sclerosis, messages from the brain and spinal cord become delayed, leading to a variety of symptoms — including fatigue, numbness, speech difficulties, muscle stiffness, tremors and vision problems.
The causes of MS are not entirely clear. According to the Multiple Sclerosis Association of America, several factors are likely involved. One of the more popular theories is that slow-acting viruses — such as measles, herpes and Epstein-Barr — remain dormant for years and then develop into MS in “genetically susceptible people.”
Most people with MS have a normal life expectancy, although the disease itself can range from mild to severe, according to the National Multiple Sclerosis Society. Some patients who develop severe disabilities are more susceptible to infectious complications, which can lead to early death.
An estimated 2.1 million people are affected by MS worldwide — although the disease is difficult to track because U.S. physicians are not required to report new cases, and symptoms sometimes go unnoticed, according to the National Multiple Sclerosis Society.
Living in the here and now
Julie has a form of multiple sclerosis known as secondary-progressive MS. This form of MS means the disease is beginning to progress more steadily, and the person may or may not experience relapses or attacks.
Relapses are caused by lesions on the brain or spinal cord. Relapses can worsen existing symptoms or create new ones.
Julie’s last relapse was in June, when she experienced numbness from her belly button downward. It took her six months to recover. She still experiences severe fatigue and muscle stiffness and uses a walking stick — handcrafted by her previous neurologist — to help move around.
Despite setbacks, her resolve to make meaning out of her disease has been unwavering.
In her free time, Julie volunteers at Adult Day Services in Napa, which provides medical, social and therapy services to adults. During her volunteering, Julie socializes with seniors and individuals who suffer from memory loss or are in the early stages of dementia.
Julie also regularly attends a physical therapy gym. The owner of the gym recently told Julie that her dedication and perseverance was inspiring other patients. Julie didn’t realize anyone had been observing her, so the compliment took her by surprise.
“You never know when people are watching you,” she said. “You never know when people are learning something from you. I was really touched by that.”
In July, Julie and Steve will celebrate their 30th wedding anniversary. They’re planning a road trip up the coast toward the Olympic Peninsula in Washington state.
In the meantime, Julie remains focused on “living in the here and now” and finding acceptance. Her experience with MS, she said, has made her grateful for even the simplest things — like going for walks with her husband, looking at the trees, and taking in the view from her own backyard.
“I don’t take much for granted anymore,” Julie said.