REAL PEOPLE, REAL STORIES

Watch From That Day Forward: The Reality of Life with MG

Shalonda* had been working long hours as a school administrator and raising children alongside her husband Eric* when she was diagnosed with myasthenia gravis (MG) in 2005. Having been married nearly 30 years, Shalonda and Eric have experienced their share of ups and downs, but nothing that could have prepared them to take on the MG journey.

Before he was diagnosed with MG in 2016, Chris* was always on the move. He served in the U.S. Air Force for nearly 13 years. The Florida native would go spearfishing and lobstering. He was an avid scuba diver, dirt biker and motorcyclist. He lived abroad for several years. Now he’s doing his best trying to adjust to life with MG.

If life with MG has you feeling a mix of emotions, you’re not alone. Watch From That Day Forward by the director who brought you A Mystery to Me to hear about Chris, Shalonda and Eric’s journeys.

Eric and Shalonda met in November 1993, and six months later they were married. “It seemed like we just couldn’t get enough of each other. I can’t even explain the chemistry,” Eric said.

Up until 2005, life had been good to Eric and Shalonda, but Eric recalled this being about the time he first started to notice his wife’s symptoms. “She was talking, just normally, and her left eye turned in. It startled me.” A few months later, Shalonda was diagnosed with MG.

I watched her go from laughing and joking to barely being able to eat and tossing and turning.

Eric
Supporter of someone living with MG

In a nearby southern town, Chris was working multiple jobs, over 20 hours a day, in addition to being active in sports. As a single father of three who was also coaching his daughters’ gymnastics team, he joked that about four hours of sleep was enough for him.

That started to change in December 2015 when he noticed that once a week or so his voice would slur and get soft. The Florida humidity was bothering him and he was having trouble swallowing, often choking on his food. He was constantly fatigued and exhausted. He was diagnosed with MG just a few months later.

“I couldn’t eat food for almost 10 months,” he said. “It stopped my whole life. It’s hard to go from being a very independent go-getter your whole life to putting the brakes on.”

For Chris, Shalonda and Eric, myasthenia gravis has become a part of everyday life.

“Shalonda went downhill so fast there was nothing I could do,” Eric shared. “I watched her go from laughing and joking to barely being able to eat and tossing and turning. She was scared. We were all scared and we didn’t know what to do.”

“I started to feel some serious weakness that I couldn’t explain. I just thought it was from working so hard for long hours,” said Shalonda, a middle school assistant principal.

“My neck was so weak I couldn’t hold my head up. My speech was distorted, and I couldn’t swallow. I was having only puréed foods at one point,” she said.

Explaining the Unexplainable

When Shalonda’s symptoms first began, she and Eric had a hard time getting an accurate diagnosis. “I never got any feedback, and that was so frustrating because she kept getting sent home from doctor’s appointments with no answers,” said Eric.

“I didn’t know what myasthenia gravis was,” said Shalonda. “Once I finally got a diagnosis of the disease and they handed me the pamphlet to go home with, it didn’t really make me understand what I was dealing with. It wasn’t until I started treatment and taking initiative to research on my own that I understood.”

“As foster parents, at one time over a six-month period we had over 40 kids, including three newborns, four kids under five and four kids from six to 10 years old. We ran a tight ship,” Eric shared of his and Shalonda’s family. “The kids didn’t understand her symptoms and they were scared at first. We took the time to explain everything to them.”

I couldn’t even spell myasthenia gravis. I had no clue what it was.

Chris
Living with MG

“For me, it was hard to accept it,” said Chris. “I had been healthy my whole life and was always busy and active.” He described having to stop all the sports he participated in as being even more emotionally frustrating than it was physically.

And getting to the point of diagnosis wasn’t simple for Chris, either. “Doctors thought it was a gastrointestinal issue, and when it turned out that nothing was wrong there, they suggested I go see a psychiatrist. But I knew my body and I knew something was wrong.”

Chris shared that when he finally got a diagnosis of MG, he had more questions than answers. “I couldn’t even spell myasthenia gravis. I had no clue what it was.”

“Now, when I look back, I almost feel like a burden. When I talk about my past and the journey I’ve been on with MG, I still feel like it’s a burden sometimes to my family, to my girls, my parents, my brothers,” Chris said.

Looking Ahead

If you’re living with MG and looking for ways to move forward after your diagnosis, discover an approach that may help you set your lifestyle goals. Take the Finding Your Path Forward with MG Quiz for additional resources that may be helpful.

And no matter what the road ahead looks like, you may want to set goals big or small. For Chris, he’s happy to be able to mow his lawn again. “It took me a couple days, but I can. I couldn’t do it at all before,” he shared.

“It can get better,” said Chris. “I remember the first time I went to a support group. It was awesome to hear people with similar experiences,” he recalled. “There’s a lot of hope.”

In the future, he’s hoping to be able to do more with his granddaughter. “I can only hold her for a certain amount of time. I can’t really watch her by myself, but it’s my hope to be able to do that one day.”

Eric and Shalonda are also holding on to hope for the future. “Nothing is going to stop us,” Eric said of his wife’s MG diagnosis. “We’re going to keep on moving.”

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