Winnie-the-Pooh reimagined to illustrate the daily realities of rare disease

When Manley Lavender turned 50, his wife threw him a surprise party. What started as a day of celebrations, ended in concerns when Lavender began to slur his speech, and he started feeling like something was wrong.

At first, he tried to explain what he was feeling away. “I don’t drink. Maybe it’s the sun. Maybe something that I ate, and it didn’t agree with me. We really didn’t know what was going on,” Lavender said.

The next day he made a doctor’s appointment. He was still slurring his speech by the time the appointment was scheduled three days later. His doctor referred him to a neurologist, and from there it snowballed into Lavender being sent from specialist to specialist.

It took eight years for him to finally get a diagnosis of myasthenia gravis (MG), a rare, chronic autoimmune neuromuscular disorder that causes muscle weakness and fatigue. The condition occurs when the body’s immune system mistakenly attacks the communication point between nerves and muscles, making it more difficult for muscles to respond to signals from the brain.

Approximately 32 in 100,000 Canadians are diagnosed with MG, and it is often misunderstood or goes unrecognized. The disease causes fluctuating muscle weakness and fatigue that can affect everyday activities such as speaking, swallowing, walking and, in severe cases, even breathing.

“You could line 10 people up who have all been diagnosed with MG, and we’re all going to present differently. That is why it’s so difficult to get diagnosed,” Lavender said.

For Lavender, who was a very athletic person, the diagnosis changed his life. Now, he’s an advocate for spreading the word about what MG is. “I work as hard as I do with awareness because there are people half my age, and they haven’t even lived their life.”

Lavender spent 20 years competing in triathlons, he officiated hockey games for 30 years and he taught outdoor education for 25 years. All the things he was able to do before his diagnosis, he’s grateful for.

Lavender, and other Canadians living with MG, have been working with Muscular Dystrophy Canada and UCB Canada, to launch a special chapter edition of Winnie-the-Pooh to help Canadians better understand the realities of living with MG.

The idea behind the story was inspired by Christoper Robin Milne, who lived with MG and was the son of Winnie-the-Pooh author A.A Milne. The special chapter reimagines Pooh’s journey through the real-life experiences of Canadians living with MG, marking the 100th anniversary of the original book.

When Lavender was approached about the project, he immediately jumped at the chance to be involved. “What a creative way to take a world-renowned character and then give him a disease like MG. Every time he climbs over a fence, and he gets stuck, or he gets stuck in the honey pot, it’s not because he’s got a large waist, but it’s because he has MG and his muscles have just stopped, and now he’s got to rest for a bit.”

There is no cure for MG, and while Lavender is currently stable, “if I was to have a setback or what they call a crisis, it’s like starting over depending on how severe it is.”

When he was first experiencing symptoms, there were days his got so tired he literally couldn’t talk, some days his muscles feel like there’s anchors attached to them with how heavy they feel.

Lavender said it was important that the Winnie-the-Pooh story was realistic. “It’s realistic to see that Pooh gets up in the morning and he fills his day. Now it’s not a lot, but he has a full day.” In the story Pooh has to at times stop and catch his breath, as a simple walk takes a lot out of him, he has to take a moment to gather his thoughts as his brain can become foggy. These are incidents that those living with MG face.

He said it was also important that Pooh is surrounded by all of his friends. “I couldn’t be where I’m at without being as close to my family and my friends as I have been.”

Lavender hopes that the project will spark more conversations across Canada about MG. The message he hopes readers take away is that no matter what situation they might be in to, “be resilient, be positive and get up every day and appreciate that day.”

For more information and to access the story got to ucbcanada.com.