Prepare, Perform, Prevail

Get 5 Lessons for navigating the rare disease Alpha 1 from a pioneering fighter pilot.

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Book cover of Fearless Leadership with author and pilot Carey Lohrenz

Carey Lohrenz knows about high-flying pressure. She was the first female U.S. Navy pilot to fly an F-14 Tomcat Fighter.

So not only did she have to learn to fly planes under dangerous, demanding conditions, but she did it while confronting doubts that a woman could be successful in the job. Lohrenz prevailed and has gone on to share her approach to overcoming seemingly insurmountable obstacles. She recently brought her message of “fearless leadership” to patients who have the rare disease Alpha 1 Antitrypsin Deficiency.

CSL Behring invited Lohrenz, who wrote a best-selling book on the topic, to a virtual meeting for patients who have Alpha 1, a genetic disease that often affects breathing. She calls the cockpit of a fighter pilot “one of the most demanding environments on earth.”

Here’s why: The $45 million aircraft is outfitted with 350 switches and dials; the pilot must communicate on three radios on three frequencies; and conditions are constantly changing for the pilot, who’s wearing 35 pounds of gear, while maneuvering along with as many as 20 wingmen. Not to mention the G-forces that make it feel like an elephant is in your lap.

“I’m constantly trying to synthesize all this information while being overwhelmed,” she said.

But whether the challenge is a rare disease or landing a jet on an aircraft carrier, Lohrenz said the root problem is the same: fear.

“How are you going to build your ability to work through fear and do what needs to be done despite that fear?” she asked. Lohrenz shared a simple program for preparing, performing and prevailing. Here are five takeaways:

  1. Understand your purpose and determine what’s in your “span of control – and what’s not.” Bringing focus to your task is essential. Write it down and share it with loved ones and your health care team. Those who understand their purpose and can quickly align their actions will get where they want to go faster, she said.

     

  2. Drive out anything that doesn’t get you closer to your goal, which for a patient could be making lifestyle choices and following a treatment plan. “That clear vision really gives you focus and focus is power. And diluted focus is diluted power.” It’s not selfish to put yourself first in the interest of your health, she said.

     

  3. Take action despite the possibility of failure. Resist the temptation to be passive, even if you’ve been dealt a setback, she said. “The one thing that holds out to be true is that when the environment is uncertain, those people who continue taking action are the ones who not only thrive, but survive. And action conquers fear.”

     

  4. Watch out for “limiting beliefs.” The voice in your head that says “I can’t” can be a powerful force. Fight it by framing problems in a positive way. “Your perspective, your mindset, your belief about whether you have the ability to change or affect a different outcome is profound,” Lohrenz said. “We all perform and we all show up and behave based on what we believe we can do, not based on what we can actually do.”

     

  5. Be real about resilience. “Resilience” can seem like something magical you have or you don’t, but Lohrenz defines resilience as “taking control of your own fate and participating in the outcome.” Alpha 1 patient – and strength trainer – Karen Skålvoll demonstrated this when she pulled a MiG-15 and an F-104 Starfighter down an airport runway to break a record.

This applies even if your goals are not so dramatic. Just doing something like staying on top of your treatment plan and advocating for yourself so that you get the care you need – it all takes effort and perseverance.

“Uncertainty and ambiguity can paralyze you. That fear sets in,” Lohrenz said. “It envelops us and instead of strapping into our jets and taking off, some days we just want to curl up and wait for the storm to pass. Or we can do what Karen did and just keep pulling.”