REAL PEOPLE, REAL STORIES

John’s* MG Diagnosis Teaches Him to Lean on His Family

John was used to being a leader whom other people relied on. His daughter Whitney* had always looked up to him as the person with all the answers. But John’s myasthenia gravis diagnosis dramatically shifted the dynamic in their relationship. Over time, the father and daughter had to learn what their new roles would be in each other’s lives—and, ultimately, how to find peace in relying on others.

John thought the plane he was on was going to crash.

The longtime father, coach and school administrator had always felt comfortable taking charge of situations, both in his professional life and at home. But in those moments when the plane almost fell out of the sky, John realized that his life was completely out of his own hands. The experience caused long-lasting stress in his life that left him shaken to his core.

Shortly after this traumatic experience, John was playing tennis, his favorite sport, and began hitting balls so high they landed in the next court. He never had problems with ball control like that before. Next, John’s eyes started drooping, and then one side of his face drooped as well.

It was very emotional to see my role as a leader in my family change dramatically.

John
Living with MG

John knew something was wrong and began meeting with doctors. After a year of undiagnosed symptoms, a neurologist tested John and diagnosed him with myasthenia gravis (MG). Slowly, he began to realize he was going to need help navigating his life with MG. “Everything you take for granted is taken away from you, and I had to rely on my daughter and my wife to take care of me,” John said. “As someone who has always been relied on, it was very emotional to see my role as a leader in my family change dramatically.”

Meanwhile, John’s daughter, Whitney, was riding a career high. John had been Whitney’s tennis coach growing up, but her true love was cooking. It was a love born from multi-generational traditions, spending time with her grandma and mom in the kitchen. Whitney’s passion for cooking guided her to college to be a dietitian. During her senior year, Whitney found herself competing on season one of the cooking show, MasterChef. But she didn’t just compete—she won.

Food can be a huge part of emotional healing. Let me see how I can use it to try to help my dad.

Whitney
John’s daughter and caregiver

Whitney never asked for fame, but here she was traveling the world and being recognized for her cooking. That same year, the man who’d always encouraged her to pursue that passion was diagnosed with MG. Whitney looked up to her father as her coach and the person who had all the answers. Her role in his life was about to change. “To see somebody you love going through that experience is awful and the first thing you think about is wanting to help them,” Whitney said. “I went in thinking that, since food can be a huge part of emotional healing, let me see how I can use it to try to help my dad.”

Whitney adjusted her recipes to be more health conscious since some people may undergo weight gain while managing MG. For an entire year Whitney cooked without using any salt, something other chefs might consider an unforgivable sin. John sometimes had trouble swallowing, so she experimented with cooking methods that made the foods she cooked, particularly meat, softer.

Whitney prepared meals at home because she loved to cook and she wanted to use that passion to try to help her dad with his MG. But she was traveling a lot during this time after her success on MasterChef, so she also wanted to teach him how to cook on his own. Once John had settled into his life with MG, she brought him into the kitchen with her. It was her turn to be the coach. “I was teaching him all these little tips and tricks that could conserve energy in the kitchen,” she said. “I showed him how to use a grater for vegetables, or a garlic press or food processor, so he wasn’t repetitively chopping.”

Whitney wanted to help her dad eliminate long periods of time standing in the kitchen as he prepared a meal. She taught him how to make entire meals in the oven by roasting vegetables and cooking meat simultaneously on a sheet pan. When he got hungry throughout the day, she made sure he knew how to make healthy snacks that he’d truly enjoy.

Nobody else understood what my dad was going through.

Whitney
John’s daughter and caregiver

Whitney and her mom could see that being around to support John was working for their family. But a gnawing question grew in the back of their minds: Who was there to support them? “For my mom and me, it was such a lonely period of time because nobody else around us understood what my dad was going through,” she said. “When dad received his diagnosis, we immediately started researching because we’d never heard of MG. And it was awful because the one line that stuck in our minds was that there was no cure.”

John and Whitney’s family was on an island. They leaned on each other for a long time to cope with feelings of isolation. Finally, they attended their first myasthenia gravis national convention and realized there was an entire community of people living with MG. Just as important, the caregivers who supported them were a big part of it.

The MG community welcomed them with open arms. The island disappeared. “I could feel this weight lift off my shoulders the first time I spoke to somebody else caring for someone with MG,” Whitney said. “There’s an instant bond that I have a hard time explaining because we’re dealing with this invisible disease nobody else can see or understand except for us.”

Today, John and Whitney have settled into a life where MG will always be present but doesn’t hang over them like a dark cloud. Whitney and her dad play tennis together as a way for him to relieve stress. John has found peace in relying on the people who used to rely on him. “The number one realization I had was that I can’t do it all by myself and that it was okay to ask for help,” John said. “And I’m so fortunate to have a daughter and wife who take care of me. I feel so blessed to have them in my life.”

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