A family’s love: creating awareness in hope of finding new answers
The Migraine Research Foundation reports that half of those who suffer from migraine disease have their first attack before the age of 12. For Robert Pushis, the attacks started even younger. Robert’s earliest migraine memory is of himself as a confused first grader who didn’t understand why his head hurt so much.
Now 16, both the pain and frequency have increased as Robert has grown older. During his early preteen years, the attacks were every other day, at least 15-20 per month, even while taking four preventive medications. Robert says it feels like his head is in a vice grip and if a piece of his skull could be removed to relieve the pain, then he would probably feel better.
According to his mom, Jeanne, “He’d get an hour or two into his school day before he started getting sick. His teachers and principal often blew him off because they suspected that he was faking the whole thing to avoid classwork.” Yet Robert was a straight-A student who even won the junior high science fair. In reality, he always “Push-is” through the pain to conquer his assignments.
Jeanne and her husband, Neil, never worried about Robert’s ability to keep up intellectually with his peers. Instead, their concerns focused around the number of maintenance medications that seemed to cause more problems then they solved. The prescribed antidepressants seemed to steal away Robert’s great quirky personality and replaced him with someone they didn’t recognize. Jeanne remembers thinking that the boy he had become was not her son. Likewise, the Topamax caused Robert severe memory loss and weight gain. “He still has times where he says ‘I don’t remember that, Mom,’” shares Jeanne. “I recognize that Topamax may work for other people, and that’s fantastic, but it was just a nightmare for us.” Especially since Robert was not seeing even the slightest level of improvement from the mounting number of prescriptions.
Jeanne watched as her little boy battled against an invisible monster. The mentality of setting long-term goals for the future faded into the background as she worked tirelessly to help her son. Her goal was just to get through the day, to get the whole family through the day. Robert’s migraine attacks brought a multitude of symptoms including nausea and vomiting, black-outs, temporary vision loss, auras, and more. Jeanne was determined to find him relief. Reflecting back on that difficult time in their lives, she admits, “If someone would have told us to put peanut butter on his feet and hang him upside down because that would keep him from ever getting another one, we would have tried it.”
The search for triggers and ways to limit or avoid exposure consumed every aspect of their lives. Jeanne describes how they spent their days journaling and researching everything that he did from sunrise to sunset. “What’s he eating? What activities is he in? What’s going on at the school? What’s in his room? Is something triggering this? Is it mold?” It wasn’t until Robert met with his second neurologist, a doctor located in Toledo, that barometric pressure was a trigger. For Jeanne, it was like a lightbulb went off—this was it! “People thought we were crazy!”
Jeanne refused to believe that medications and endless pain were the only norm her son would ever know. The family put the barometric pressure theory to a test by vacationing at the Gulf. “We stayed for two weeks, and he wasn’t sick!” proclaims Jeanne. “We discovered his biggest trigger.” At a time when concerns were mounting over the damaging side effects of ineffective medications, the entire family was ready and willing to do whatever it took.
Move away migraine
The family hit a breaking point as they watched Robert fight for any level of normalcy. Robert’s younger sister, Hailey, describes the heartbreak of having to skip Christmas one year. “Christmas is usually such a fun holiday, but that year it wasn’t for us,” she explains. She was not concerned with what she missed but was focused on wanting her brother’s health to be better. “That was our last Christmas in Indiana. The Christmas 2016 attack confirmed that we had to move and get him somewhere where he’s not sick all the time,”says Jeanne.
Mississippi has been listed as one of the top five states to live when working to lessen barometric pressure triggers, so the Pushis family packed up everything and moved from Indiana to Mississippi. Relocating came with mixed emotions, especially for Jeanne. They had sold their dream home, the home that had been built up from nothing with the intention of creating lifelong memories. Her feelings and emotions tied to what she had viewed as their ‘perfect home’ came to an instant halt when Robert told her he didn’t have a single good memory of that house, saying “My memories are of being sick, always in the bathroom vomiting, and lying on the couch day in and day out. I will never think of this house again!”
It was a sobering statement that changed her perspective from that moment on. No longer focusing on what may have been lost, she instead turned her focus on the future. “I think that is why it was so easy for us to make the transition,” she shares. “When you take your core group with you, and you’ve got all those people who will cheer you on no matter what, it doesn’t matter where you’re at.”
A sister’s love
Amazingly, Hailey’s love for her brother overshadowed any concerns she had about moving. She knew that she would miss her friends, but was excited to move because her brother wouldn’t be as sick. Jeanne confirms how well Hailey took the move: “She’s always had an admiration for her brother; she’s always really considered him her hero.”
And Hailey wanted to do something to help her hero. Hailey, who has never had a migraine attack herself, has made advocating for awareness of this disease her mission. She has watched for years as her brother quietly endured his frequent migraine attacks. She has witnessed firsthand the stigma associated with migraine disease. Hailey doesn’t want anyone else to go through what Robert and her family have endured.
In her quest to spread awareness, Hailey found the Association of Migraine Disorders (AMD), a non-profit with a passion for reducing stigma. Hailey felt this organization was the perfect fit to help her.
Hailey started a local chapter for migraine awareness at her school through AMD’s Migraine Club program. This program arms a student advocate at any age level to start a club in their school. It is designed to give students resources, topic discussions, activities and support to help facilitate their meetings. The program, Jeanne says, encourages students to learn more about migraine.
“Maybe they have a family member or even themselves experience migraine attacks. Hailey has provided her peers with a safe place to learn and share as they debunk the stigmas that may cause people to look down on you or assume that there is something you should be doing that you aren’t,” says Jeanne.
Another growing avenue for awareness has been Hailey’s participation in beauty pageants. “Mom entered me in my first pageant when I was 6,” she shares. “Someone suggested that I use chronic migraine awareness as my platform.” The decision to focus on awareness for migraine disease was natural for Hailey. “It’s something that has most impacted my life, as well as my whole family. Other girls say that they chose their platform, but I say that my platform chose me.”
Her platform is Shades for Migraine, a campaign hosted by AMD each year on June 21, Migraine Solidarity Day. The goal: for people to show their support of those with headache and migraine disease by wearing a pair of sunglasses the entire day.
Hailey took another step in her advocacy efforts by requesting her governor to declare the month of June as National Migraine And Headache Awareness Month, an awareness initiative jointly created by U.S. Pain Foundation and CHAMP (Coalition For Migraine And Headache Patients). In 2018 Mississippi Governor Phil Bryant issued a Proclamation, which is proudly displayed in the Pushis home.
Hailey uses her @keepcalmandbevisible Facebook and Instagram pages to spread awareness and is planning to start a blog, which will no doubt inspire so many others.
Hailey is not the only member of the Pushis family to advocate for migraine awareness. It has become a family mission. Jeanne admits she didn’t really know anything about the disease until Robert started having them. She explains, “Migraines were not something that was a family history type thing, and so diagnosis came with a learning curve.” But the family rallied together. “We’re all very very close,” says Jeanne. “As a family, we plan to continue advocating through Miles for Migraine in Ridgeland. The Pushis family always ‘Push-is’ through!”
Association of Migraine Disorders: migrainedisorders.org
Shades for Migraine: shadesformigraine.org
Migraine Research Foundation: migraineresearchfoundation.org