Editor’s Note: Barbara Bowie, who founded Angels of the Arts at the behest of Henry Segerstrom, and her husband, Alex, a partner in an Orange County law firm, are well known in OC business and social circles.
What follows is an excerpt from her book published this year, “From Wheelchair to Dance Floor: How one woman conquered MS and you can too!”
This week’s Business Journal’s OC50 Special Report features the most influential local executives shaping the future of the healthcare industry.
In 1967, when I was 33 years old, my body started going haywire. My dad, Thomas B. Rhone, a prominent vascular surgeon, sent me to specialists to find out what was wrong.
One day after a variety of tests, I asked him what was going on. He removed his glasses to wipe the tears that welled in his eyes.
“Honey, we think you have a disease called multiple sclerosis,” he said.
I’d never heard of it before. Back in the 1960s, MS wasn’t a commonly known illness. But my dad clearly did know what it was, and it crushed him to tell me about the debilitating disease.
During a follow-up appointment at UCLA, my husband Alex asked the MS specialist point-blank, “What’s the bottom line?”
“If you’re pushing me to tell you whether she has MS, I’m going to say, ‘Yes, she has it.’ And she’ll live 15 years,” he said.
I accepted the MS diagnosis but wasn’t so convinced about the 15-year death sentence.
Like a Light Switch
I saw a lot of specialists. Sometimes, things got better. Months and even years went by when my body felt great: I could pick up the mug on the coffee table, hold the knife and fork, grab the toothbrush, dress myself, and even play tennis.
Then there were months and years where, like a light switch, my body just shut off—specifically, the left side of it: half my face drooping from paralysis, my one arm dangling lifelessly, my atrophied left leg secured in a brace and making me walk stiff, and my one eye blind.
I had always been optimistic and hopeful, so I didn’t ever seek pity or sympathy. I often prayed, which helped me. At a dinner in 1995, I told my friend Ron Simon, who has founded three successful Orange County businesses, that “you and I are going to be on the dance floor together.” While it was a lively joke, I was dead serious.
One day, a friend suggested working out with a bodybuilder. Her idea seemed kind of crazy, given how my body had seemed to give up on me. Then again, my stubborn drive to conquer my MS pushed me to try nearly anything.
I went to Costa Mesa’s MET-Rx Gym, which was old school: no designer juice bars, TV screens, yoga studio or Jacuzzis.
Many guys were competitive bodybuilders, so training for hours at the gym multiple times a day was part of their job. In other words, frail 62-year-old women weren’t this gym’s core demographic.
I met trainer Dan Judge, a slender man who built himself up to be the Michelin Man.
“Is it true what I heard about you, that you were a weakling that turned yourself into a bodybuilder?” I asked.
“That pretty much sums it up,” Dan replied.
“Great! Listen, I need to get well. So, I’m going to pay you to make my weak body strong,” I said.
He had a look of disbelief. I’m sure Dan didn’t know how in the world he would train me—let alone handle the risk I would get even worse. In my fragile state, he probably worried I could snap in two at any moment.
What would the doctors who had been treating my MS, including the world’s foremost experts, have said? I’m sure they would have discouraged me from working with a fitness trainer who had no expertise in helping a disabled person, let alone someone without knowledge of the specific needs and vulnerabilities a person with MS has.
So, I didn’t tell my doctors. I went with my gut instinct.
After so much time being inactive and locked up in the brace, my left leg was also really ugly. The muscles had atrophied to the point that it looked all skin and bones. Compared to the right one, it stood out even more. Dan told me he could make my legs match.
“Kid, I don’t know how you’re going to do that, but I’ll go along with it,” I said.
Dan proposed one hour of training four days a week: Monday, Tuesday, Thursday, and Friday. Wednesdays and weekends would be my rest days.
“You have to exert and push yourself. Then rest to allow your body to repair itself,” Dan told me.
He explained that bodies have muscle memory. The muscles in my body had been weak for years, and now they were asleep. I needed to wake them up.
The first two weeks, Dan quickly figured out what my body could and couldn’t do and what exercises I needed to focus on. We eventually set up a plan: On Monday and Thursday, we would train my upper body. On Tuesday and Friday, we would work my lower body.
Three months after sticking to my four-days-a-week exercise routine, I woke up one morning still needing my brace, cane, and husband’s help to get out of bed. But there was a difference that I felt in my bones!
“Alex, I know you can’t see it yet, but I can feel it. My weak body is getting stronger,” I told him.
Dan and I saw results—nothing too dramatic. Little by little, I was lifting heavier weights. One day after three years of training, I rushed to leave the house and I forgot to put on my brace.
I got out the door and realized I was walking without it. From that point on, I no longer needed the brace.
At 65 years old, I declared victory after a decades-long battle with multiple sclerosis. That year, I donated my two motorized mobility scooters and my collection of canes.
The contrast between the woman with full-blown MS and the one who was now shopping, golfing, and dancing was a shock to many, including Ron Simon. As I had pledged to him years before, we met on the dance floor during a party.
As I’m nearing the tenth decade of my life, I’m making more friends than ever.
Life is an adventure, and there’s no better way to enjoy my journey than to be surrounded by people I love.