Paul Robertson can tell you how falling down can change the course of your life, twice—for worse and for better.
For many years, he experienced a series of trips and stumbles, small difficulties getting around and a propensity to catch his feet and toes. His sister Nicole, 11 years younger, had similar tendencies. Maybe they were just clumsy, they thought. Paul saw a doctor about his knees.
He saw more doctors, who performed more tests, and eventually he was told he had a muscle disease, but not what kind, or how it could affect him. Eventually, after years of research and work with doctors, DNA testing confirmed Paul had limb-girdle muscular dystrophy (LGMD) form 2J.
At the time, he was in his 30s, ran his own successful construction business and had a wife and four children. He coached sports teams and visited work sites and met with clients.
“Really, I didn’t want to admit that I had muscular dystrophy or that I had a problem,” Paul said. “When you’re in denial with a disease and you don’t want people to know about it because either you feel ashamed of it or you’re just trying to beat it or whatever it may be … you know eventually, you have to ask for help.”
Shortly after Paul’s diagnosis, his sister Nicole was also diagnosed with LGMD as well, and the two found themselves leaning more and more on each other. Initially, neither was forthcoming with their disease or its prognosis.
“It took some time,” Nicole said. “But one day I just woke up and thought, you know what? This is a part of me. This is who I am and if I don’t accept it, how can I expect other people to accept what’s happening?
“Paul would not say the words ‘muscular dystrophy’ for many, many years,” Nicole said. “I kept saying to him, ‘Just own it. You’re all in with everything that you have—just own it.’”
Paul said he gives Nicole a lot of credit for learning to accept his diagnosis.
“She was a big push and a big help for me, you know, coming to grips with what I was dealing with and being able to say, ‘Hey, we’ve got to take control of this disease.’ And it’s great to have a sounding board when you’re having some of those days when things just aren’t feeling right. To be able to reach up, pick up the phone and call and say, ‘You know, I’m having a tough day’ … that’s been really good for the two of us.”
But Paul had to fall one more time before his plan, purpose and passion truly aligned. Paul calls it his “Superman moment”: He clipped his feet at the top of the garage door stairs, flew through the air and landed horizontally on the garage floor.
Emotionally, he didn’t take it well. He said as much to a friend who called him later that day. Paul told his friend he didn’t know how to cope.
That friend reminded Paul of a dream—a wish Paul had once expressed to build an offshore fishing team.
“Dreams expire,” his friend said.
And so Paul’s life changed again. He’d grown up in Ocean City, Md., fishing on boats or off bridges. He loved how it brought together family and friends and created the opportunity to get to know new people—not to mention relieve stress.
Paul wrote a letter to MDA CEO Stephen Dirks saying he wanted to fish in support of MDA. He got a call the day his letter was delivered.
In 2015, Fishing for Muscular Dystrophy was officially formed in a strategic alliance with MDA. The full-time offshore fishing team competes around the U.S., donating tournament winnings and a significant amount of sponsor and other proceeds to MDA.
“My goal as an individual is to build a program that will be able to donate a million dollars per year to the MDA,” Paul said.
“There’s a lot of great things we can still do with our lives,” he said.
It all goes back to that question sister Nicole put to him: Why not be all in?
“Everything in life isn’t always positive, but when you do have things that are challenges … that’s OK. You learn from it, you move forward and there’s always a new challenge and a new project tomorrow.
“‘Live Unlimited,’ to me, is not letting obstacles get in your way for living out your dreams,” Paul said. “Whatever obstacles you’re dealt in life … you’ve go to go out there and you’ve got to demonstrate and show people you can do things. You can succeed. You might have to ask for help, and you might have to have others do it with you, but it doesn’t mean you have to bear everything on your own shoulders to live out your dream.”
How do you live out your dreams? Share your story—and get inspired by others—at mda.org/liveunlimited.
