“The happier I got, the healthier I got.”
– Carlyn Shaw
More than a year ago, I met Carlyn Shaw at a women’s business group. Her wide, ever-present smile was one I wouldn’t easily forget.
Nor could I forget what she said.
“I healed myself of MS,” she told me.
As we talked further, the mystery deepened.
In alleviating her multiple sclerosis, Carlyn doesn’t load her plate with greens or even eliminate sugar. And she hasn’t fully cut out gluten and dairy.
Instead, it’s more about mindset and emotions, about getting out of stressful situations, about loving her body, and most important, trusting that it can heal.
On a windy spring day, which happened to be the 9th anniversary of Carlyn quitting her MS medications, we walked briskly around a windswept Colorado lake.
Along the way, she offered a glimpse into how her relationship with herself, her body and with MS has changed the disease for her.
“The happier I got, the healthier I got,” she said.
Read on to understand Carlyn’s journey, her five steps for an action-oriented mindset, and how repeatedly “choosing happy” has made all the difference.
Defining Her Multiple Sclerosis Diagnosis on Her Own Terms
In 1997, as a sophomore at Indiana University, Carlyn started the day with a surprise. While the rest of her woke up, the left side of her body did NOT.
The previous day, she had rowed with the intramural crew team, hoping to get to know a guy she was crushing on. She chalked up the odd numbness to overdoing it in the boat.
But a call to her mom soon confirmed, “Carlyn, this is not normal.”
By the next morning, her condition had worsened. Her right scalp was tingly and the vision in her right eye had blurred. When a doctor touched her with a cotton swab and needle, she couldn’t tell the difference.
An MRI uncovered the likely culprit: lesions on her brain and brain stem – the classic signs of multiple sclerosis.
She continued with a spinal tap to confirm the diagnosis, but maddeningly, the lab lost her sample. No way would she go through the procedure again after suffering painful complications the first time.
At this point, Carlyn had a partial diagnosis, leaving the door open for doubt in her mind.
“Maybe I don’t have it,” she thought at the time. “Maybe the protein [to confirm MS] wouldn’t have come back. I’m just gonna be Carlyn and look at the glass as half full. From day one, I never clung to it.”
“Back then, there was no Google for me to look up MS,” she added. “So I allowed MS to show up for me in a way that worked for me versus what society and doctors were saying MS was.”
She chalked up the exacerbation to the stress of college, and to mistreating her body. Sure, she drank too much like most college students. But more than that, she had had an eating disorder and persistent, damaging body- and self-image issues.
Grief that Puts MS in Perspective
But soon, MS would be the least of her worries. One month after her diagnosis, Carlyn lost one of her best friends in a car accident.
The grief, weighed against multiple sclerosis, felt incomparable.
Then nine months later, her other best friend died, also in a car accident.
“People say, ‘How did you handle your MS?’” she says. “I didn’t care. When your best friends die, they don’t come back. That was much harder to handle.”
Unlike her friends, she was still here. She would focus on what she could do, and not what she couldn’t.
Stress…and the Link to Multiple Sclerosis
In the meantime, Carlyn had started weekly infusions of the MS drug Avonex in an attempt to slow the progression of the disease.
Knowing she would feel flu-like symptoms afterward, she scheduled treatments for Sundays, and gave herself the full day on Monday to feel better before an evening class.
She continued the infusions through college and as she began her career in Dallas, in a job in radio advertising sales that was far from her dream of being the next Jane Pauley.
After that first exacerbation, Carlyn felt mostly back to herself, except for a slight “wiggle in her walk” on her left side, otherwise known as drop foot in MS.
But one day, she woke up covered in hives.
“Oh my gosh, my job is making me sick,” she realized.
Hit with that reality, she quit her job and moved on, this time to San Diego.
Once again, stress chipped away at her health. Working as the PR manager for a hotel in La Jolla had her putting in 12-hour days.
In the midst of extreme stress, she woke with a paralyzed left leg – her second major exacerbation, which came seven years after the first.
This time, the numbness last two weeks. As Carlyn gained function back, with help from a recumbent bike, she again heeded her body and moved on to another job.
Swapping Smoking for Running
While in San Diego, Carlyn chose to ditch her 15-year smoking habit. Soon after, her friends challenged her to run a half marathon.
“I realized that running a half would keep me from smoking again,” she said.
Early in Carlyn’s diagnosis, doctors admonished those with multiple sclerosis not to exercise or overheat. But that went against her intuition to move her body.
In the past, exercise had been “punishment,” to beat her body into a form she preferred.
Now, she relished that she could run.
“I was getting to run,” she said. “Running ended up being the best gift I ever gave myself. I didn’t know I would fall in love with it.”
She would arrive each week for her MS infusions, by then Tysabri, already dressed in running clothes. Afterward, she would take off for a jog.
Running served as both stress relief and therapy to keep her body strong and functioning.
Leaps of Faith
Over the years, Carlyn has repeatedly taken leaps of faith as she follows her heart.
In 2005, she followed a long-held dream to live and work in Australia for a short time. In doing so, she temporarily went off MS infusions – taking only a bottle of Prednisone with her, just in case.
Later, back in the States and back on infusions, she faced a choice. On temporary health insurance following a layoff, she learned her regular infusions would now cost $3,000.
The decision was simple; she had to quit the meds.
But more than that, the steep price tag nudged her to do what her intuition had been telling her anyway. Doctors had let her know that a percentage of people receiving Tysabri had developed a devastating brain infection called PML (progressive multifocal leukoencephalopathy).
If she remained on the drug, she would need even more frequent MRIs and other testing for the brain disease.
“Am I treating a disease or am I treating a medication?” she thought. “I think I’m treating a medication. Who needs that extra stress if stress makes my MS worse?”
She had dodged a bomb. Carlyn later learned that she carried the gene that was found as the link between Tysabri and PML.
A few months later, Carlyn took another leap of faith. At the age of 33, she decided to make a fresh start in Wilmington, North Carolina where she knew no one and no one knew about her MS.
“I started over from scratch and didn’t bring the MS label with me,” she said.
In 2012, she made another move, this time to Denver. She’d lived on both coasts. Now it was time to explore Colorado.
With each of these moves, Carlyn followed the inner voice guiding her.
“Every time I chose me, it meant choosing happy,” she says.
Meanwhile, Carlyn continued running…until she broke her foot. As she recovered, a goal began forming in her mind.
She wanted to run the Boston marathon, the running world’s most prestigious race in the city where she was actually born. Plus, the bombing in 2013 had lit a fire.
“Running was my passion, and you don’t mess with it,” she said. “I knew people would be scared. I was going to run for my cause for those who can’t, and not let a bombing hold me back.”
She raised money for the MS Society, earning her a spot in the race. And on top of that, she was asked to give the keynote at the society’s banquet the night before.
Later that year, she went on to run the NYC marathon too.
In every race, her long blond hair is pulled into a ponytail or braids to ensure that others can read the tattoo etched into the back of her neck, where her brain stem is.
That personal bumper sticker, in her mother’s handwriting, reads, “Love Life.”
“I really wanted a tattoo on the back of my neck where my lesions are,” she says. “This is where messages pass, and I want to bless every message that passes through my body.”
Following Her Heart, and Guiding Others
Today, Carlyn lives in Colorado, and remains active and off all multiple sclerosis medications.
Beyond inspiring those with MS to keep moving and stay positive, she helps others make personal connections through a group she started, which has since become a movement, called Strangers to Friends. Knowing the power of connection in her own life, Carlyn’s group helps others make real connection in a world that’s more disconnected than ever.
She’s also a connection and transformation coach for people going through transition or wanting to get themselves and their lives to a different place.
Because Carlyn knows that, as she shifted her own story, she changed her life. Mostly, it’s about trusting your heart and following it.
“My inner knowing is in everything I do,” she says. “If I’m following my heart, it’s going to work out.”
The Power of Mindset
Can your mindset really shift a disease as potentially debilitating as multiple sclerosis?
Evidence suggests, yes. Consider the placebo effect, where people report improved symptoms even while taking medications…without any actual medicine in them.
Rebecca Arnold, a psychotherapist at Blue Lotus Body Therapy, says that cortisol hormones from current, or even past stress, can trigger significant disruption in our health, from our digestion to immunity to our ability to repair.
“When we increase feel-good hormones, we increase our ability to repair and heal,” she says.
For that, she suggests activities such as humor, massage, being in nature and social connections – all things central to Carlyn’s life.
The 5 Fundamentals of Carlyn’s Action-Oriented Mindset
Wondering how to adopt Carlyn’s “choose happy” mindset? Here are five tips:
1. Be kind to your body – Carlyn had to start loving her body and drop the negative self-thoughts.
“I didn’t know at the time that mistreating my body with food, being hard on myself and hating myself when I look in the mirror was actually stress,” she says.
2. Manage stress – From Carlyn’s experience, stress and unhappiness can bring on exacerbations. She remains ever-aware of her stress levels and follows habits of self-care to manage it.
3. Realize you are not your disease – Carlyn says she never allowed MS to define her. Instead, she has defined it for herself, and remained focused on moving forward and all the things she can do.
4. Turn stumbling blocks into stepping stones – Setbacks such as MS or the loss of her friends have become motivators to live life to its fullest, and be grateful for her capabilities, not disabilities.
5. Listen to your body – Before an exacerbation or health event, there may be small signs that you’re stressing your body. Be aware and take steps to head it off.
“I have a lot of awareness now in my body and I have to listen to it,” she says.
Most critically, she wants others to know that their bodies can recover.
“Our bodies are made to heal,” she says. “It just takes time. I don’t know other peoples’ stories so I never tell someone else, ‘This is the way.’ But this is my story.”
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