By: Scott Nishimura
By: Scott Nishimura
By: Scott Nishimura
It’s a big question, one thrown onto the table sometime after the plates of enchiladas at the El Fenix on Camp Bowie were cleared. “Sunny, what does hope look like to you?”
Sunny Brous Erasmus, 30, two and a half years removed from what she calls the “death sentence” diagnosis of amyotrophic lateral schlerosis, or Lou Gehrig’s disease, is ready for that one. It was a straight ball over the plate, the kind she used to feast on as a softball player.
“Hope looks like getting some of my strength back with this new drug,” says Sunny, her trek pole, “Phil,” a walking stick she uses to get around, lying on the bench next to her. In August, she’s to begin treatments – assuming she can afford it under her insurance – with a newly approved, but expensive, drug called Radicava that slowed the decline of daily functioning in human trials.
“Hope is not just stopping this,” Sunny continues. “It’s reversing it. It’s better quality of life.” Who’s to say in 10 years, with advances in medicine, she can’t be in the same stage she’s in now, Sunny says.
“Hope is having kids,” she says. “I can’t imagine life without being a mom. That’s something I’ve always identified myself as.” Her 11-month-old nephew is “as big as a sumo wrestler,” she says. “And I can’t hold him.”
Erasmus – director of development and events for Junior Achievement of the Chisholm Trail, the Fort Worth regional office of the nonprofit that runs instruction on entrepreneurship, financial literacy, and work and college readiness for schoolchildren – isn’t giving up. The disease has no cure, but she’s kept on living. Every day of the neurodegenerative disease brings more stiffness, cramps, muscle deterioration, and risk of bad falls, which have occurred several times in recent months. And more concessions: first, Phil, and, most recently, the acquisition of a scooter and a service dog, a chocolate Lab named Baloo Bear that will be trained to retrieve things Sunny drops.
Her social worker was surprised Sunny was still working. She continues to work full-time, running golf and bowling tournaments to raise money for JA. Just since the fall, Sunny and her husband Kenneth Erasmus married, bought a home, traveled to Mexico for a family wedding, and helped serve 142 steaks out of a tent at a cook-off in her hometown of Hico. She’s volunteered for the Vision Fort Worth leadership program for young business people, given speeches on her journey, blogged on living with the disease, and ticked items off of a substantial bucket list. In early July, she got to throw out the first pitch during ALS awareness night at the Red Sox-Rangers game in Arlington. “She’s getting it all in,” Laurie Jackson, Sunny’s mother and a retired Justice of the Peace in Hico who now works at one of the city’s banks, says, understatedly.
Throw an epic 30th birthday party? Check, with 65 guests earlier this year. Sunny gathers friends like metal to a magnet – college buddies and friends she’s met through Junior Achievement, Vision Fort Worth, and growing up in Hico – and she comes from a big family. Her grandfather Michie Brous founded the Panther Boys Club in Fort Worth and was its executive director for 27 years. Her great-grandparents, the Rev. Hugh Brous Sr. and Muna Lehew Brous, founded The Brous Private School in Fort Worth, which operated for 50 years.
Drive a car she can’t afford? Check. Sunny borrowed a new Porsche Carrera and got it up to 105 on the highway in Aledo. Rewatch every episode of “Grey’s Anatomy” with her husband? In progress. This raises the question of why somebody in her position would want to watch a TV series where people die every episode. “It’s the only show I’ve committed to through high school, college and graduate school,” says Sunny, who holds a business degree from Tarleton State University and master’s in education from Texas State University. And “Grey’s Anatomy” prompted end-of-life conversations with her husband. “I’ve had ALS a year longer than I’ve had him.” Her favorite character: the diminutive Dr. Miranda Bailey. “I think we’re soul sisters,” Sunny, who’s 5 feet 9 inches, says. “We’re bossy. We’re in charge.”
Schedule another big summer trip with her girlfriends – a core, and since-expanded, group she met while attending Tarleton State 10 years ago? That one’s in the works. The “girls” – all athletes, and comprising mostly teachers and coaches today – have been to Cabo San Lucas, Jamaica, the Dominican Republic, Costa Rica and Aruba. “My dream trip is the Maldives,” Sunny says. For this summer’s outing, the group came to Sunny for a four-day weekend in June that included massages, hair and nail appointments, a visit to Fort Worth’s new Topgolf driving range, Friday on the Green concert on West Magnolia Avenue, and dancing at Studio 80. The women even got to take turns pushing Sunny’s new scooter, a device that briefly allowed her to keep up, across Magnolia, its battery drained. “This is the girl who just got her boobs done,” Sunny says, pointing out one of the women – still sore from surgery, but gamely up for swinging a club – as the group assembled at Topgolf in the middle of a hot Saturday for two hours of Michelob Ultras, topped balls and dramatic fades.
On the Cabo trip, one of the women, Ashley Rodriguez, a coach at a school in Benbrook, confided she thought she might be pregnant. Off to Walgreens they went for pregnancy tests. “Ashley peed on three of them, and I peed on two of them,” Sunny says. “For control.” Back home, Sunny didn’t wait on confirmation from the official test results, calling the office of Rodriguez’s physician, providing a correct full name and birthdate, and learning the results. Rodriguez’ soon-to-be 6-year-old son is so far the lone offspring of the group. The group – today living in Corpus Christi, Benbrook, Waco, New Braunfels, and Granbury – includes four coaches who’ve been able to provide quick support to Sunny, group-texting on concussion symptoms after one of her most recent falls.
The trips have become more difficult to execute with their more complicated lives, but Sunny’s illness has helped keep them together. “We don’t know if we’re going to have two years with her, or eight years,” Rodriguez says. “Seeing her slow down, that let us know we have to be there.”
Through it all, Sunny has continued to throw humor and candor at her disease. “I know I promised more fun, upbeat posts, but, y’all, this is serious: I am losing my shoulders,” Sunny wrote on her Wordpress blog, Sunnystrong, in early June.
That gave way to an honest update: “I used to have strong, muscle-filled shoulders; they could lift weights, push girls around in the paint, and pop to smack a softball,” wrote Sunny, who played every sport in Hico, where she says “everybody played everything or they wouldn’t have enough people.”
To anybody who didn’t know the story, Sunny reminded readers she noticed something was wrong in early 2013 when she experienced muscle weakness.
“Thankfully, there are some constants,” she added. “My sisters and I always take ridiculous pictures together.” Her 28-year-old twin sisters Casey and Carlie live in Dallas and Lampasas. “I will always find a way to hug those I love, with or without shoulders. Muscle atrophy is a harsh, ever-present reality of ALS. I’ll try to make sure my straps are pretty, since we’re all going to be looking at them.”
Sunny’s honesty surprises no one who knows her. “You want honesty, you go to Sunny,” says Kacy Railsback, another Tarleton graduate and member of the girls' group.
That Sunny has made her journey so public has been a source of inspiration for Fort Worth’s young professionals, says Marilyn Gilbert, executive vice president of marketing for the Fort Worth Chamber of Commerce, Sunny’s chamber mentor in the Vision Fort Worth program. One of Sunny's speeches was in August last year to a Vision group.
“It’s really informed this group of young people,” Gilbert says. “Not everybody would do that. A lot of them would just want to be private about it and go on. She’s a leader.”
Gilbert’s first meeting with Sunny was over lunch the day after her diagnosis, and Sunny’s demeanor was striking. “She was realistic, yet at the same time she was optimistic,” Gilbert says. “She was upbeat.”
It’s well past lunch at the El Fenix, and Sunny’s contemplating how she’s going to feel when she gets up. “My muscles are constantly in a state of cramping,” she says. Sunny has to take care to stay hydrated throughout the day to deal with the charley horses.
She’s not cramping now. “But it’ll be really hard to stand up in a minute,” she says. “My mind still thinks I’m an athlete. I’m really stiff after sitting for awhile. Sitting for long periods of time is just as detrimental as standing. When I stand up, I have to stretch to make sure I’m balanced.” The muscle tightness is where the falls – 15 or 20, she estimates – happen. And because she has no strength in her upper extremities, she can’t grab anything or push off to prevent the fall. “Whatever is solid, that hits. It’s usually my face.”
She orders food she doesn’t have to cut. She improvises at banquets. People who’ve been around her know to help, and Sunny’s not shy about asking. Like the friend sitting next to her at one banquet whose father had died of ALS and who cut up the steak on her plate. “Switch!” she said, giving her plate to Sunny.
Massages relieve. She got a deep massage on her honeymoon and slept for the next seven hours. “It’s like a full-body workout.”
Her mother worries and is grateful for Sunny’s husband. “I worry about her all the time,” Jackson said during a recent break from work to entertain a guest at the bank, 90 minutes from Fort Worth. “I worry about her any time the phone rings.” Jackson needs to work full-time, or she’d be spending much more time with her daughter. “If I wasn’t working here, I’d be up there helping as much as I can.”
Sunny’s path to diagnosis was long. Playing first base in a softball intramural tournament in April 2013, “I went to close my glove and couldn’t,” she says. She was having difficulty pushing herself up out of the tub, one of her refuges. Six months later, while working in her job as assistant director of housing at Weatherford College, she threw her back out. “Pain motivates,” she says. She had twitching in a ring finger and weakness in her upper body.
That began a year of tests. A sports therapist looked for nerve damage, a spine specialist for degenerative disc. Finally, a pain specialist asked what her pain level was. “Three,” Sunny responded. “And you're 2.5 of it because your office isn't where Google Maps said it was.” The physician sent her back to her primary care doctor, telling her she needed to start over.
At about the same time, Sunny switched jobs, moving to Junior Achievement, where she’d volunteered for two years. JA helps apply school teaching to workforce needs. In middle school, students explore finances and careers. In high school, students learn how to develop companies and soft skills necessary to compete in the workforce. Sunny runs five bowlathons and two golf tournaments annually, raising money toward the annual $1.2 million budget. She also occasionally teaches. “My niche is second grade,” where JA talks about jobs and personal finance skills like calculating income tax. “We are the same maturity level and enjoy all the same jokes.”
Sunny’s physician next ruled out rheumatoid arthritis and lupus and sent her to a neurologist. “That was the start that it was a neuro issue,” she says. Her neurologist narrowed the possibilities to ALS or another condition that presents the same way, but is curable. In January 2015, Sunny arrived alone at her neurologist’s office, believing she was in for another referral. “I’d been doing this for a whole year and a half,” she says.
Instead, her physician delivered the diagnosis and told her she had three things to think about: Did she want a second opinion? Did she want to try an expensive drug Riluzole? And did she want to consider clinical trials?
Sunny drove home, got into her pajamas, and called her longtime friend, Dawn Kahlden, who she worked with at Weatherford College, where Kahlden is director of special populations. Kahlden brought over a cheese ball, tub of Cool Whip, bottle of wine and one beer. “She was bawling; I couldn’t understand her,” Kahlden says. “I ran home, grabbed whatever I could find. It must have been before payday.” The two, eschewing the neurologist's advice, read up on ALS on Kahlden’s iPad. Two to five years’ life expectancy, with some patients living longer, they read. “Well, that’s not going to be me,” Sunny said of the short end of the stick. “No,” Kahlden replied, “you’re a little more stubborn.”
“We read, took a shot to take the edge off, and read more,” recalls Sunny, who called in sick to her office. “I said it’s ALS, I’ll be in tomorrow, and we’ll take it from there."
From the reading, Sunny learned the hot baths she thought she was enjoying were instead triggering muscle fatigue. Then it was time to revisit her neurologist’s three questions. Did she want a second opinion? “Do I want to go through all that again?” Sunny says. She went through testing again over two appointments, starting with blood work. “I didn’t realize I had that much blood in my body, much less that you can take it and let me walk out of there,” she says. Then came an electromyogram test, which measures electrical activity and reaction time in muscles. Small electrodes are placed on the skin and around the fingers, and brief shocks are delivered. In the second half of the test, small pins are inserted into the muscles, and the patient is asked to contract muscles. “The test is very interpretive, so every doctor wants to do their own,” she says. Finally, she had a spinal tap to rule out another disease. The diagnosis came back ALS again. She opted for the Riluzole treatment. And she participated in a clinical trial, even though the drug was already available off label use, meaning it could be prescribed for treatment not included in the government's approved label. “I wanted to contribute to science,” she says.
Her employer’s insurance coverage has meant she pays $75 per month for the fistful of prescription medications she takes. She hasn’t determined whether the insurance will cover the new medication that’s coming out in August. “I don’t know how that’s going to pan out,” she says.
At the El Fenix, the interview has gone well past the what-happened-and-when questions. Sunny grew up Baptist, but wasn’t regularly attending church before she met her husband, whose father is a deacon at Ridglea Baptist Church in Fort Worth. Sunny talks a lot about God in her blog posts.
What is God’s plan for Sunny? “I absolutely have no idea,” she says, taking another sip of her Dr Pepper on the table in front of her. “But I trust him explicitly. It’s one of the few areas in life where I’m able to pass control. I don’t need to know the answer. I have peace knowing that he is in control.”
She believes God put her future husband in her path. The two met through an online site and went bowling on their first date in November 2015 to Main Event in Fort Worth. “They had to put up the bumpers for me,” she says. She didn’t confide her disease then. “I couldn’t drop the ALS bomb on the first date,” she says. Sunny did, however, return texts from two girlfriends to say she was enjoying herself, a mutual protection tactic they’d deployed previously to bail out of bad dates. “I told Kenneth I have to respond, or they will show up,” she says.
ALS came out the next day on their second date, over breakfast. “This is going to get worse before it gets better, and better is death,” Sunny said.
It had occurred to Kenneth Erasmus the previous day that Sunny was a bad bowler, but he suspected nothing else. “I could tell she was getting tired, but she wouldn’t give up,” says Erasmus, a golf pro and service adviser for a luxury car dealership in Fort Worth. And he’d already sensed the girlfriends, noticing her online dating profile was covered with pictures of her and friends.
The two married on a golf course in November last year, but not before Sunny’s friends beat a path to Kenneth – "every single one of them, and that's a lot," he says – to tell him he had to stick with her. “You’ve got to be in this for the long haul, or 500 of us will come break your legs, and we will kill you,” Kahlden recalls telling Sunny’s fiancée. “We had her back. I think she was expecting it.”
During Sunny’s bachelorette party, which started with manicures and pedicures, and then moved to Rahr Brewing on the Near Southside, Los Vaqueros in the Stockyards, Pete’s Dueling Piano Bar downtown, and the Capital Bar in West Seventh, Sunny fell in the street while trying to get into an Uber ride. The driver thought she was drunk. “What do you need?” Kahlden asked Sunny, who said, “I need you to pick my ass up and put me in this car.”
Erasmus thinks he knows what God’s plan is for Sunny. “Just to be a role model to friends and family, be an inspiration to those around her,” he says. “Whatever happens, she believes there’s a purpose behind it. She would give you the shirt off her back before she thinks of herself.”
Sunny helped prepare her friends for what’s ahead, sending out an Evite locally, inviting them to a showing of the 2016 documentary “Gleason,” about the former New Orleans Saints football player Steve Gleason, who was diagnosed with ALS at 34. He’s 40 today and has established a foundation to provide advanced technology and equipment to people with neuromuscular diseases. A power outage shut the showing down, but Kahlden saw it later. “I don’t know I could have handled watching it with Sunny,” she says.
Sunny and her husband bought a home in West Fort Worth this spring, moving out of Sunny’s apartment, but taking care to ensure they can make the payments on Kenneth Erasmus' income. Junior Achievement helped Sunny obtain voice software that's recording a database of her speech and will speak for her one day – “I can say fuck across the room in my own voice," she says – and arrange her schedule for efficiency. The couple isn't sure about insurance if Sunny can no longer work. “We're starting to look at that,” Kenneth Erasmus says. They talk about having children. ALS is rarely passed along genetically, but they’re waiting to see how the disease progresses. “I don’t want to inflict the burden of parenthood and caring for me fulltime on another person if I’m not going to be around to help,” Sunny says. In the meantime, she enjoys other people’s kids, like her nephew Peyton and Kahlden’s fourth-grade son Hudson and third-grade daughter Quinn, who routinely vacuumed Sunny’s apartment with a Dustbuster.
Sunny’s regular doctor appointments today include quarterly “clinics” with her healthcare team and other ALS patients. They meet in an infusion suite at Texas Neurology in Dallas, which diagnosed Sunny. Patients and guests – they’re each allowed two, and Sunny has a waiting list – sit in a circle, and their physicians and other team members rotate. Some patients have died since Sunny began attending the clinics.
Her dietician tells her she needs to keep taking in calories and can’t lose or gain too much weight – five pounds either direction of her base weight. At some point, if she loses too much weight or can’t swallow, she’ll have to consider a feeding tube. “He said, ‘you’ll know,’” says Sunny, who gets a milkshake on the way home from work when her daily calorie intake isn't high enough to maintain energy.
Her speech therapist looks for regression in her speech and warns Sunny against overusing muscles related to swallowing. This could be a tough one for Sunny. “I don’t know if you notice, but Sunny talks a lot,” says her mother, who named her daughter Sunny because it seemed appropriate.
Sunny’s occupational therapist trains her in minimizing exertion and maximizing efficiency and runs hand-and-thumb strength tests. She coaches her to sit back to conserve trunk strength and build in rest if she’s on her feet for a long period.
Sunny's physical therapist teaches her to engage muscles before standing. Sunny has trouble reaching and pulling and getting dressed. Her medications include pills to control cramps. Sunny typically doesn’t sleep well, so she uses Ambien to help.
In April, she posted about having read the bestseller “Tuesdays with Morrie,” about author Mitch Albom’s relationship with an old college professor dying of ALS. Some of Albom’s takeaways that Sunny highlighted:
“Why suffer in front of so many people? Stay at home. Get your affairs in order. But the idea of quitting did not occur to Morrie.”
“Love is when you are as concerned about someone else’s situation as you are about your own.”
“I may be dying, but I am surrounded by loving, caring souls. How many people can say that?”
“I give myself a good cry if I need it. But then I concentrate on all the good things still in my life.”
“Sunny will always find the positive and the brightest. The silver lining,” Kahlden says. “She’s defied the odds. She’s already moved slower than they thought it would.”
By: Scott Nishimura
By: Scott Nishimura
By: Scott Nishimura