By Alexander Rivero
Ryan O’Connor’s life knew no major health hiccups until some time after his thirty-sixth birthday where, without the slightest warning, the former Army cook was diagnosed with epilepsy. Scanning his family’s own medical background, Ryan and his wife Marissa were flabbergasted to find that no such history of epilepsy existed.
“I just started having seizures all of a sudden,” says Ryan, “and they diagnosed me in 2011. Completely out of the blue.”
In 2014, Ryan switched over to a Keto diet—a high-fat/low-carbohydrate diet therapy known to reduce the effects of epilepsy. This helped tremendously, and he saw his situation improve for the following four years. Then, in 2018, while driving on a road trip to North Carolina, he suffered a massive seizure. It was the last time Ryan would ever drive again.
“With epilepsy, you really learn what it’s like to have your freedom taken away,” Ryan says. “I have to wait for other people if I need to go anywhere because I can no longer drive. It’s just too risky.”
Life in general for the O’Connors since 2011, and especially after 2018, turned into an endless game of ping-pong with medical professionals hell-bent on pushing medication to treat the epilepsy.
Ryan recalls, “All doctors wanted was to put me on meds, until in 2020 we finally agreed to go in on a brain surgery implant.” The implant was a responsive neurostimulation (RNS) implant, which places the device underneath the scalp and within the skull, and is then connected to two electrodes.
The couple keeps a blog on Ryan’s condition, as well as his progress on his latest endeavor: the Journey of 1,000 Miles—a foot-trek up from Florida to Missouri to help raise awareness for epilepsy, begun in October. As Ryan walks, Marissa drives the RV and remains available for him at a moment’s notice, parking five to ten miles up ahead at a nearby rest stop and monitoring him via satellite GPS constantly, so that if she sees there is a sudden stop in his rate of speed, she acts immediately. As of this writing, the couple was making its way up Ocala, Florida.
“Knock on wood,” Ryan says, “we haven’t run into any major obstacles yet. The sun and the lack of shade is a bit of a problem, though, especially coming up central Florida.”
In researching epilepsy to feed the blog, Marissa noticed the lack of federal funding for the condition.
“It is hands-down the least funded chronic condition,” she says. “It gets less than $50 million in federal funding, which is not a lot compared to, say, breast cancer which receives upward of $500 million.”
The reason for this funding disparity according to her? Semantics.
“It’s just not a sexy-sounding disease,” she says. “Most epileptics don’t call it a disease, even. They call it a condition. But the truth is that no epileptic is the same, and there’s not one kind of seizure. Everybody sees the epilepsy portrayed in films and television. But what a lot of people don’t know is that there are also things called blank seizures and abdominal seizures—which showcase zero symptoms. There’s a lot to know about epilepsy.”
To train for the Journey, Ryan started walking outdoors, but quickly realized he had to move things indoors to remain consistent. He installed a treadmill at his desk (literally tucked underneath it and extending outward, so that he could walk as he worked), and burned through two of them before realizing he needed a commercial treadmill to train at the level he envisioned. His goal was originally to keep to a 40-mile-per-day standard, but very quickly into the reality of things, he found the pace too taxing to keep up.
“I cut back to 20, maybe 25 miles a day,” says Ryan, “because it’s just too much of a grind to consistently aim for 40. Of course, the walking element is only a portion of the things you have to worry about. We have to figure out where to park our RV to camp each night.”
There are benefits to walking so much, of course. Ryan estimates that he is burning through about 5,000 calories each day. To replenish, he sticks mostly to a high protein diet and limits his carbohydrate intake.
“My body does better with low carbohydrates,” he says.
The O’Connors hope to bring greater awareness to the general public on not just the disease itself, but the commonality of it in the general population, where one in every 26 people will develop it, and one out of every ten will have a seizure.
“We have to get the government to fund it better, because there are far better ways to tackle epilepsy than through medication currently available,” Marissa says.
For more information on the O’Connor’s fight to raise epilepsy awareness, please visit their blog at www.rocstopseizures.com and scan the material, including the link to donate to their cause located in their blog.