Amanda Ingrassia is the brain behind My Chronic Brain. Anyone who has perused an issue of the online magazine knows that every issue is painstakingly put together, with care and passion put into every issue. I took some time to chat with Amanda, the publication’s Editor-in-Chief, about advocacy, illness and life with migraine.
A quick aside about how I met Amanda: She tweeted about chronic illness, wondering if anyone else was feeling a little overwhelmed by the everyday challenges of being chronically ill. I answered, and we started building a friendship. Five years later, I consider her a very close friend. We were lucky to meet in person at RetreatMigraine, and we talk frequently via FaceTime. Online friendships are what you make of them — it’s one of the reasons I love this community.
Amanda’s migraine was triggered by a concussion. She was in a car accident when she was 18 years old and the headache that started soon after morphed into a migraine. Three years ago the migraine became hemiplegic migraine (HM). I asked Amanda how hers presents. In her case, her whole right side is affected. It begins with a tingling in her shoulder and creeps down. During the attack, she can barely move. She suffers from productive aphasia, meaning she cannot form words correctly but can understand speech. After the attack subsides, she is “walloped” with a headache.
You may recognize Amanda’s service dog Genius. He is trained to alert when she is about to have a hemiplegic attack. He starts by nudging her to sit down, and he will get help from the nearest caregiver. If she passed out, he will sit on her, apply pressure and lick her until she wakes up. He makes it possible for her to have more freedom to do things on her own.
How did she get started in advocacy?
“For me it was a a matter of survival. I needed to learn about migraine. And then it was natural to information share this with others. I did not start out to start a magazine. I got really frustrated and fatigued looking for info. And I just thought, ‘Oh, wouldn’t it be great if there was a nice newsletter.’”
So she found like minded people, and My Chronic Brain was born.
“If I needed the information, I figured other people did too,” she said.
It was an easy fit as Amanda’s background is in adult information and literacy.
And My Chronic Brain is designed with people who have migraine in mind. For example, the font is larger so that it is easier to read. The intentionality of the magazine is by design because Amanda has a clear vision and passion for the subject matter. And she’s not the only one. She assembled a team that researches and writes on a variety of subjects pertaining to living with migraine.
When it comes to advocacy, “there are always really good opportunities out there. Find out what you want to do and what you are passionate about, to avoid the burnout.”
We discussed the importance of evaluating those opportunities, and passing on them it they don’t fit into your specific skill set. She shared, “Just because there is a need doesn’t mean you have to fill it. Find the thing that really makes you happy.”
Advocacy has spread to her family. It’s natural for the Ingrassia family. Her brother and sisters are involved. Even her elementary school-aged nephew Ethan completed his science fair projects on migraine, convinced he will be the one to cure the disease. And he just might!
Even though Amanda did not plan to be an advocate, she certainly is a great leader in the migraine and headache community.