Hamilton Herald Masthead


Front Page - Friday, May 17, 2024

Just Another obstacle

Kilimanjaro beckons as Howard’s newest battle vs. epilepsy

Mount Kilimanjaro towers over the Tanzanian plain like a snow-capped god, taunting mortals to scale its heights. As Africa’s tallest mountain and one of the seven great summits of the world, it’s a staggering monolith that reduces human beings to invisible microbes crawling along its serpentine trails.

Christy Howard, a 50-year-old Chattanooga woman who suffers from epilepsy, has accepted the challenge. To create greater public awareness of the chronic disease – which affects the brains of 50 million people worldwide – Howard plans to join the microscopic masses this July as she attempts to scale Kilimanjaro’s 19,341 rugged, gasping feet and reach Uhuru Peak, the mountain’s highest point.

“I told my family, ‘If I do this, I want to do it for a reason,” Howard says.

For all of its astounding magnitude, Kilimanjaro cowers in the shadow of the mountain Howard climbs every day. A child of Harrison, she was diagnosed with epilepsy when she was 16. She’d just earned her driver’s license and was thinking ahead to college when she had her first seizure.

Thirty-four years later, she’s still not allowed to drive, and the medicine she takes to mitigate the severity of her seizures (40,000 milligrams a week spread across four prescriptions) slows her thinking and makes her drowsy. As a result, she’s unable to hold down a job or cook a meal.

“When someone asks me, ‘How are you doing?’ I’ll say, ‘Good,’ or ‘I’m having a hard week,’” Howard says. “But I don’t go into how tired I am. The kind of seizures I have make my body feel like it hasn’t slept for 48 hours.”

Even worse, any single seizure could kill her, Howard notes.

“Seizures are more dangerous than people realize. You hear about how serious cancer is, but you don’t hear about how every seizure could end your life.”

Howard suffers from tonic-clonic seizures, formerly known as grand mal seizures. While some epilepsy patients appear to be in a haze or twitch when having an episode, she experiences the nightmarish version. In addition to losing consciousness, her limbs jerk violently and she erratically bends and relaxes her joints. That most of her episodes occur when she’s sleeping is a mercy.

“Most of my seizures occur after I’ve been asleep for about 10 or 20 minutes. I’ve had a few when I was awake. I’ve had a seizure while I was at a restaurant. It’s not a pretty thing to watch or hear.”

Howard is not alone in her epilepsy; her husband of 27 years, James, is with her, as are their two daughters, Lucy and Gracie, making Christy’s disease a family affair.

James, who works at Sunny 92.3 Radio and is the host of “This ‘N That” on News Channel 9, is Christy’s load-bearing wall. He times her seizures to make sure they’re not occurring too frequently, keeps her from falling off their bed when she’s having an episode and administers aftercare.

The latter includes scanning Christy’s head with a magnet that communicates with a device her neurosurgeon implanted in her brain. Called a NeuroPace, the mechanism observes and attends to her brain activity, much like a pacemaker helps a heartbeat at a normal rhythm.

“We eat, sleep and breathe this every day,” James says. “When I know Christy has had a seizure, I’ll say something silly, like, ‘Let’s go hiking,’ even though it’s 2 o’clock in the morning. After she says, ‘James, stop,’ I’ll scan her head. If she has another seizure within an hour, I’m supposed to call 9-1-1. We’ve ended up in a hospital twice because I couldn’t stop her seizures.”

“It’s an everyday, every-moment thing,” Christy adds. “I text James before and after I take a shower.”

While epilepsy can be physically taxing, it can also take an emotional toll on a person, Christy says. She calls epilepsy “a lonely disease” that impacts not just her but everyone within her sphere, including her family and even her friends.

“I’m not the only one who’s living with this; James is living with it, too, and he’s not only afraid for me, but he’s also responsible for taking care of me. If something happens to me, he’ll have to deal with the emotional fallout that will come with thinking he didn’t do what he should have done. Epilepsy can be very mentally and emotionally challenging to everyone it touches.”

James nods in agreement and weighs his words for several seconds before adding them to what his wife said.

“I thank God when Christy texts me when I’m at work in the morning. When you’re married, you picture yourself and your spouse growing old together and sitting on the porch when you’re both 85. But I don’t see that with Christy. I can’t. I’ve never said this to anyone – including Christy – but it’s been in my head for several years.”

Something else has been on James’ mind, too: The time Christy’s neurologist, Dr. Jerzy Szaflarski at UAB Hospital in Birmingham, Alabama, encouraged her to live her life in spite of her epilepsy.

“Because of his encouragement, we’re trying to appreciate life more,” he says.

Meanwhile, Christy has placed epilepsy’s grimmest threat in mental box she rarely opens.

“I try to not think about how each seizure could end my life,” she says. “I’ve put that thought away and accepted that this is my life – this is a part of who I am. I don’t spend all of my time thinking of epilepsy as dangerous.”

This optimistic stance opens Christy to activities from which she might shy away if she were habitually wringing her hands. For example, when James purchased her a pair of hiking staffs three years ago, she grabbed them and started hitting trails throughout the Chattanooga area. As she limbered up and her lungs took in the woodland air, she began to reminisce about her younger, athletic self.

“I played soccer and water skied,” she recalls. “Atari came out around the same time, but I couldn’t get into it. I liked the outdoors.”

James, who met and began dating Christy in college, didn’t know his wife in the days before her diagnosis. But he could see she was relishing their family hikes, so he suggested the thing that spurred him to buy the staffs in the first place: climbing Kilimanjaro.

After some hesitation, she warmed up to the idea.

“The last thing I want to do is pressure my wife into doing something she’s not crazy about or comfortable with,” he says. “But this trip has snowballed.”

Just like Christy, James and their children manage her epilepsy together in their daily lives, they plan to make Kilimanjaro another family affair. So, James is going, as are Lucy and Gracie.

Also joining them on the $6,000 per person excursion (not including gear, supplies and tips) will be an entourage at least a dozen strong that includes friends, a team nurse, a guide, cooks and porters. This will allow Christy and her family to focus on their epic trek up the African mountain.

To prepare, Christy and her family are tackling the longer and more difficult local trails, with the toughest to date being the grueling footpaths through Savage Gulf State Park in Beersheba Springs. Although they’re unable to train locally for the elevation changes they’ll experience as they climb Kilimanjaro, their goal is for each of them to be in optimum shape by July 10 – the day their ascent begins.

“A lot of what we’re doing to prepare involves is finding trails with a lot of hills,” explains Christy. “We’ve also camped several times as a group, which has helped us get to know each other and learn about what each of us needs to be ready to do.”

Some of the training has educated James in ways he did not expect.

“There are devices that allow women to pee in the woods. I did not know these existed. I’m overhearing their conversations, and I’m like, ‘Are you kidding me?’”

The Howards will be taking a route up Kilimanjaro that will allow them to gradually acclimate to the increased elevation. This is critical, Christy says, because the higher she goes, the greater the chance that the thinning air will trigger a seizure.

“Our neurologist says the high altitude will probably cause seizures,” James confirms with a frown.

For this reason, the couple have spent months planning for every foreseeable circumstance, including stocking up on a costly rescue medicine known as Nayzilam and arranging to airlift Christy off the mountain if she begins to experience a period of increased seizure activity, known as a seizure cluster.

Christy says she understands the need for meticulous planning, but stopping short of the summit is not an option.

“The people who didn’t know me before my diagnosis have never seen how competitive I am,” she says. “I’m saying, ‘Kilimanjaro will not defeat me.’ At the time Naysila, I know there’s a chance some of us might not summit, including me. But I don’t want to admit that epilepsy could defeat me, so my mindset is, ‘I’m going to beat this.’”

The success rate of the eight-day route is 85%, the website Ultimate Kilimanjaro (ultimatekilimanjaro.com) explains. Not only that, but scaling Kilimanjaro requires no technical skills or equipment such as rope or a harness. Therefore, it’s a “walk up” peak, not a climbing peak. In addition, many people who climb Kilimanjaro have no substantial hiking or backpacking experience when they arrive, the website states.

Even so, James seems to be trying to prepare his wife for the possibility of a curtailed trip.

“We all share Christy’s attitude. We’re going to summit; we’re going to conquer Kilimanjaro,” James says. “At the same time, making it to the starting line will be an accomplishment for her.”

“I understand what you’re saying,” Christy says to her husband, “but for me to feel successful, I need to summit. If I don’t, then I’ll have to deal that.”

“I see it differently,” James replies, like a dog with a bone. “You have epilepsy, you’re on several meds and you have a device in your brain. If you make it to the starting line, that’s your accomplishment.”

One can understand the seesaw nature of their civil discussion, given the ups and downs they have experienced over the years. Perhaps their defining moment came after a surgery to remove a mass from Christy’s brain initially appeared to have stopped her seizures, only for her to begin experiencing them again.

“Her first seizure after the surgery was heartbreaking because we’d gone several weeks without one,” James remembers. “Then we went six weeks, then we went five weeks, and then we went four weeks. Eventually, it seemed like we were having more seizures than before the extraction.”

Christy will concede that her journey to conquer Kilimanjaro will be a success if it opens channels of discussion and compassion between people with epilepsy and those who know them. To foster this, she and her husband have launched social media pages on Facebook and Instagram, as well as a YouTube channel that contains a three-minute trailer for an upcoming documentary about Christy’s journey called “Scraped Knees.” (Google “Christy’s Climb” to located all three sources.)

“We called it ‘Scraped Knees’ because we’ve always told our daughters if they don’t have scraped knees, then they’re not doing anything,” James explains.

“I hope folks will begin to talk with each other,” Christy says. “I don’t want those who are suffering from epilepsy to remain silent; I don’t want them to quietly exist and say, ‘Good,’ when someone asks them how they’re doing. And I want the people who ask them how they’re doing to be ready to listen and help.”