In Part I of our interview, we learned how Dee came to write The Dumbest Things Smart People Say to Folks with MS, how PatientsLikeMe’s MS Community was a critical part of her research and, most importantly, her “top three dumbest things” not to say.
Today we find out more about Dee’s personal journey with multiple sclerosis (MS) as well as what it’s like to be a life coach to MS patients. Don’t miss this insightful interview with an MS patient who has focused her life around other MS patients.
You’re a life coach with a specialty in MS patients. Tell us what kind of obstacles you see your MS clients facing – and ultimately overcoming.
I’ve always found it comforting, as do my clients, to know that we face similar obstacles. Since there are a lot of similarities I’ve developed a three-stage program to give us the structure we need to overcome the obstacles and live our best lives with MS: Regroup, Realign and Reinvent.
First, we’ve got to regroup. Consider Laurie. After her diagnosis there was so much happening: her grief, her family’s grief, recovering from optic neuritis and the steroids, learning how to give herself injections, deciding who she should and shouldn’t inform about her illness, trying different medications for different symptoms, dealing with the Dumb Things people said to her.
For Laurie, for most of us, this was a traumatic, overwhelming time. We dedicated an entire coaching session to regrouping. In other words, understanding every new obstacle in her life and creating a plan to take care of it. It wasn’t easy, but I’d been through it too, so Laurie knew she could depend on me to see her through. For my clients it’s a kind of “getting your feet back on the ground” stage, where I teach them how to move out of “overwhelm” to a sense of control. It’s a skill they can use for the rest of their lives.
In the first stage we’ve made a conscious effort to understand what living with MS means for us. In the second stage we realign to our new reality. The sooner, the better. When your car starts pulling or drifting away from a straight line, you know it’s out of alignment. When we begin learning to living with MS, we’re out of alignment. Without realizing it our minds drift to the dreams and the expectations we’ve always had. We’ve got to realign the way we look at the world, to let go of all our dreams and expectations in order to clear a space for stage three.
For Dave this was particularly challenging. Like Dave, often my client’s “story” has blocked his or her ability to realign. When Dave and I began coaching he focused on how this was “not where I’m supposed to be at 40 years old.” He focused on all the terrible things his ex-wife had done to him since the diagnosis, on all his mistakes, on everything that had already happened. He needed to realign. Simply put: don’t look back. I guide my clients to make a seismic shift by taking power away from their past.
When my clients have regrouped, they understand their disease and what needs to be done. When they realign, they let go of the past. In the process of realigning they learn that the quicker they let go of yesterday, the faster they can reinvent their new lives with MS…and the faster I help them create their new dreams and plans for a great life. This is much more an opportunity than an obstacle. And there is one tool my clients either love or hate but either way they’re always amazed at how well it works. They start living by this rule: “Don’t complain. Ask for what you want.”
What’s the most important lesson you’ve learned in your own MS journey?
That I had to change my definition of success. Before I was diagnosed, I had a rather cookie-cutter definition of success, with my plans lined up like a stack of dominoes. I’d get married, have kids, live in my dream house and be a strong, independent woman. I’d be a great wife, mother and professor. I’d entertain, have lots of friends, stay in great shape, play tennis. I had so many dominoes lined up that I could have tiled the kitchen floor.
And in slow motion, each domino crashed into the next. I’d get so tired that if I were starving and a plate of food was across the room I wouldn’t be able to get it. No energy meant no children, no travel, no job and no dinner parties. My herb garden shriveled. No more tennis because after a MS exacerbation I couldn’t see the ball. Stay in shape? I was so depressed I ate myself into stretch pants and [my husband] Scott’s t-shirts. Not such a great wife, family member, or any other role I’d envisioned. For a long time I just tried to stay sane and protect my energy level. It was not pretty.
I had to let go of my dreams and redefine success. Now it isn’t about the destination, it’s about the journey. I have had to become more like a pilot. While the flight plan is essential, the pilot has to continually monitor the weather, wind direction, wind speed, and make corrections along the way. Eighty percent of the time it’s about gauging the situation and making corrections. Success for someone like me who is living with MS, an unpredictable and debilitating disease, involves a lot of corrections to bring myself back on course. It’s been one heck of a flight to get here.