„I need to explain what's going on here.“
Earlier in the day, he had started taking a new migraine medication on a regular basis. Natali suffers from chronic severe migraines. “Chronic” means you have headaches at least 15 days out of the month. And by „severe“ I mean the pain is severe, even by migraine standards.
The anti-seizure medication was the latest in a series of medications prescribed by various doctors during Natali's long journey to manage her symptoms. Although many people praised this drug for reducing the number of migraines, it was also known to cloud brain function.
Natali realized that this may have been the cause of her memory loss in front of so many people. Once I gathered my thoughts, it became clear what to do.
“Okay,” he said to the congregation. „I need to explain what's going on here.“ Many in his community already knew about Natali's condition, but he typically doesn't explain it in such public appearances. We never talked about it.
He left nothing behind. He told them about the debilitating pain caused by his migraines, the series of medications he took, and the side effects, including those from a new drug that Friday night.
Have a backup plan
It was an approach he learned years ago. It was then that the migraines that Natalie first suffered as a child began to take over his life.
One night in the summer of 2003, Natali spent a painful and frightening night with a „hemiplegic“ migraine that could have reflected the symptoms of a stroke. The numbness and pain started in my legs and spread to the left side of my body.
The only reason he didn't go to the emergency room right away (he went the next morning) was because he didn't want to leave the kids alone at home. But Natali didn't want to miss the chance next time. So he consulted his son, who was in middle school at the time. They discussed how his illness would affect their lives, and together they came up with a backup plan for the next emergency.
„Instead of being scared and confused about why my dad was in the emergency room, he was informed and empowered to help me and other family members deal with whatever happens with this disease.“ „I felt that way,“ Natali said.
This gave Natali the confidence to adopt the same approach with her friends, family, and eventually members of her mosque.
Talking openly about his condition led to understanding and sympathy from many important people in his life. Why should his religious community be any different?
He was right. The community accepted and supported him to speak out. In the months following his talk, people approached Natali about that moment at the mosque. They told him how much they admired his honesty and courage in speaking about his condition. To this day, people still tell him about their and his family's experiences with migraines, and some even ask him for advice.
make the most of a good day
„I try not to let it (symptoms) dominate my life,“ he tells them. For Natali, that means creating a plan to increase productivity and reduce problems.
For example, on „good days“ – days when there are no signs of a migraine or migraine coming on – he works non-stop. „I can finish two days' worth of work in one day.“
But if he has a migraine, or is about to have one, he has some rules about what he will and won't do. And he makes sure people know about them. One simple rule concerns driving. I don't drive on days when I have a migraine.
“My migraines go from 0 to 100 in a matter of minutes,” he says. In the car, that means he may have to pull over quickly. He doesn't want to put himself or others at risk. And he doesn't want the complexity of having to explain himself.
“It would be difficult to explain to a police officer that you are not drunk or impaired, and as a black man alone in a car, it would be difficult for you to be in that position in law enforcement. “I don’t want to be,” he says.
The power to tell your story
Natali is careful to remind people that migraines are as diverse as the people who experience them. There is no single strategy that will work for everyone. Each person must work with their medical team, friends, and family to find out what is best for them.
Still, Natali realizes the power of telling her story. He says it gives others the courage to be open about their condition and ask what they need. That's why he uses his skills as a communicator to talk about migraines in public.
In the migraine community, advocates tend to be white, middle-class, and female, but Natali believes she has something unique to offer. ”
But he is not speaking only within the Muslim community. He is currently based in Jacksonville, Florida, where he speaks at conferences, churches, and mosques. He was recently interviewed on his Talking Head Pain podcast for the Global Healthy Living Foundation.
Natali aims to educate people about what they can do to manage migraines in their lives, especially those in communities that don't necessarily relate to migraines. He likes to tell people, „Black men have migraines too!“ But he says this also applies to other minority communities.
He goes back to one basic principle for managing the impact of migraines on yourself and those closest to you: communication.
„You have to talk to people. Migraine is an invisible disease,“ he says. „There's no way to know what you're going through unless you talk to people about it.“