Love and devotion, and living with MS

Chip and Jeanne Allen have faced Jeanne’s multiple sclerosis with such grace that their love story is now told in a book with a “love you” candy heart on the cover. Its title, “A Dose of Devotion,” perfectly describes their unending affection, and qualifies them for the subtitle, “How Couples Living with Multiple Sclerosis Keep Their Love Strong.”

During their 30 years together, Chip and Jeanne have gone from being avid hikers and bike riders, to a long period of enjoying tandem bike riding when Jeanne could no longer ride alone, to recent years when Jeanne zips around on a scooter and Chip frequently provides the ultimate romantic gesture of carrying her over thresholds.

These days that single step at almost every entryway may as well be a mountain for Jeanne, but Chip and Jeanne stare mountains down.

“A Dose of Devotion” was written by Ronda Giangreco and Jeanne Lassard. Ronda and her husband, Michael, also live in Sonoma, and became friends with the Allens in part because Ronda, too, has MS. Ronda came to realize that the love-conquers-all marriages both the Giangrecos the Allens cherish are not the norm. Seventy percent of couples enduring MS divorce.

“If you Google ‘marriage and MS’ you get nothing,” Ronda said. She set out to find couples with MS who have empowering love stories and write about them as an inspiration. She and Lassard identified 32 couples, and then chose 12 of them to interview for their book. Their goal was not only to show how marriage can endure MS, but also to be a blueprint for how all marriages can thrive in the face of adversity.

“This is what real love looks like,” Ronda said. “The truth is that almost all married couples at some point in their journey together are going to confront serious illness. That can be devastating or it can be a means of discovering just how deep and abiding your love is.”

When Ronda was diagnosed with sudden onset MS in 2010, she was devastated. It was particularly poignant for her husband Michael, as his mother had died of MS. Ronda decided she needed a goal to focus on, and being a foodie, she decided to cook a meal for eight people every Sunday night for a year. Although there were many Sundays when it was very difficult for her, she pulled it off. She then went on to write a book about the experience, “The Gathering Table.”

The great surprise that came from “The Gathering Table” was that it launched Ronda into a speaking-circuit whirlwind within the MS community nationwide. She spoke in 28 cities last year and 14 the year before. While signing her book after a speech in Minneapolis she met Jeanne Lassard, who became her co-author and “the daughter I never had.” Ronda and Michael have been married for 15 years and have four sons from prior marriages.

Ronda said she thought “The Gathering Table” would be read by “my neighbors and a couple of friends,” not realizing the magnitude of the MS audience. The National Institute for Neurological Disorders estimates that between 250,000 and 350,000 people in the United States have MS, and 200 new cases are diagnosed every week. “I didn’t think it would go very far. I never imagined that a year later I would be standing in front of 600 people in St. Louis.”

Her goal for “A Dose of Devotion” is completely different. “The desire from the very beginning was that we could make a difference. This book is simply a tool. It is not for the purpose of selling books.” Later this month she and Lassard are conducting a workshop in Louisville on the power of love, where they will be giving “A Dose of Devotion” away. “The first book made a big difference in my life. We hope the second book will make a big difference in a lot of other peoples lives.

Jeanne and Chip shared their story for “A Dose of Devotion” to possibly help others based on their own experience. “I am honored to be in the book,” Jeanne said. “It gives a role model for others so they can see MS doesn’t have to be a devastating end. Life can still be fun and relevant. If you love your spouse it doesn’t mean you have to quit loving them.”

Chip agrees. “We want to let people know that even if you have some limitations, don’t let that slow you down.” He said he was not uncomfortable with the details of their story being made public, “We have always been an open book.”

Chip and Jeanne met in 1985 at Club Med in Mexico, having already noticed one another on the plane flying down. It was an instant attraction that continued when they returned home to the Bay Area, where Chip was a litigation attorney and Jeanne was quickly climbing the corporate ladder at Levi Strauss.

Chip proposed on a dinner cruise in 1986, they married in 1987. But soon after they learned the pain that Jeanne was sometimes having in her legs was MS. Chip says in the book: “When we learned the truth, the first thought that came to me was that this was just something we’d deal with. I knew that it could involve a rapid degeneration. I could deal with that. But what I couldn’t deal with was the thought of losing her. Anything but that. My agreement with myself was that this is the woman I love and I was going to do whatever I need to do.”

And he has. “I am in awe of Jeanne all the time. She is the ultimate fighter. She is never going to quit.”

Jeanne says “my wonderful husband,” “my loving husband,” “my patient husband,” always referring to Chip as if his first name is a synonym for perfection. Jeanne says in the book: “Yes, things would have been different if I had not contracted this disease. I think MS magnifies who you are, your inherent qualities, and even more importantly, your core relationship. Chip and I have always believed that if you follow your passion, success will come to you. And then we look at each other and say the only thing I’m truly passionate about is you.”

Jeanne eventually had to let go of her career. They moved to Sonoma and Chip opened a private practice out of their home so they could spend more time together. A few months ago they started a new venture, again grown out of their desire to help others from what they’ve learned themselves.

Their website Incredibleaccessible.com spotlights in great detail the best places for people with disabilities to go in Wine Country. This month they are staying in 19 hotels, motels and bed and breakfasts, and will be detailing which are the easiest to navigate, from entryways to showers. Jeanne has already written about a few hotels, shops and restaurants, and they hope to have a fully comprehensive guide to the accessible places in Napa and Sonoma within a year. Then they will take on other sites across the country.

In the book Jeanne says, “I’ve gained all this knowledge about accessible travel and for years I’ve done nothing with it. It’s time to share it. I wanted to tell others about a great restaurant that has an accessible ramp so you don’t have to go through the kitchen. I want to feature a wonderful hotel and let people know the shower is reachable from the shower bench.”

She also wants to encourage anyone having trouble getting around to “use the tools.” She said she fought them for so long, starting when she first needed a cane, and it wasn’t until she actually gave in to the scooter that life became so much easier. “I had to become more disabled to become more independent,” she said.

One thing MS tried to take away from Chip and Jeanne was dancing, something they so enjoyed in their early years. But as with so many things in their lives, they found a way, something they call stand dancing. One of their favorite songs is “Lovers and Friends” by the Brothers Cazimero, that they first heard on their 10th anniversary in Hawaii. Now they turn it on and Jeanne gets up out of her scooter and leans against Chip, and although her legs are unable to move, they sway together to the music.

True lovers and friends.