An ALS Blogger Inspires Thousands To Share Their Stories

Image courtesy of the ALS Association blog

Anyone who thinks being diagnosed with a terminal illness means their life is over needs to meet Sunny Erasmus. Since her doctor confirmed her ALS diagnosis in 2016, Sunny has committed herself 100% to living her best life.

Image courtesy of FWinc. Magazine

Her “30 By 30” project, which went on to inspire her blog, SunnyStrong, was a bucket list of everything she wanted to do by the time she turned thirty. Cue some of the most memorable moments of her life: throwing the first pitch at a Rangers game, driving a Porsche 911 at 130mph, posing for the cover of a magazine. The woman is crushing it.

That blog has earned over 75,000 hits; fostered an international community of ALS patients, caregivers, and advocates (not to mention readers with no immediate personal connection to ALS); and kick-started a fundraising and advocacy team called Team Sunny Strong. Sunny, who fully embodies the optimism implied by her name and feels destined by that name to go out in the world and spread sunshine, refuses to sit at home and let ALS isolate her. “You can have this disease and stay at home,” she says, “but not interacting with others can do a number on you and make this even harder to cope with. So why not get plugged in and make a lifestyle out of it?”

Sunny is rocking the ALS lifestyle. But, like any disease, some days are better than others, some months are better than others, and Sunny has experienced her fair share of good and bad.

One of the most common scary aspects of ALS is the not knowing. While the majority of patients pass away from ALS in two to five years, there have been many cases of patients living well beyond ten years. The disease does not have a set rate of progression. Additionally, ALS is a disease of deduction. “There’s no qualifier,” Sunny explains. “If you wake up and your throat hurts, your doctor can swab your throat and test you for the Flu. With ALS, there’s nothing like that. You have to rule out everything there is a qualifier for. And that can take a long time.”

For Sunny, the diagnostic process took eighteen months. For many patients, it can take much longer. Much. Longer. Having thrown out her back, Sunny went to see her doctor and decided to mention the twitch in her left ring finger and the difficulty closing her left hand. She had no idea what kind of chain reaction that small twitch would cause. To determine exactly what the cause was, her doctors had to rule everything out. That meant tests. Lots and lots of tests. “At one appointment,” Sunny remembers, “they took more blood than I knew you could take from a person and still have them walk out of the doctor’s office.”

In addition to the physical and mental toll the diagnostic process can take, there’s no small financial burden, as well. “You have a copay for every appointment,” Sunny points out. “Your first appointment is a meet-and-greet, then you come back for an eval, then again for test results. So that’s three copays per specialist. And the higher up in the chain you go, the longer it takes to make an appointment.” Sunny’s experience with the diagnostic process is a vivid example of the trials ALS patients and their families fight through every day. Nothing is simple. The biggest lesson Sunny learned during those endless months of appointments and tests is that “you have to be your own advocate.” No one, she says, knows how you’re feeling better than you.

At the time of her testing, Sunny was still rocking that single life. Sometimes she had friends go to appointments with her, but she couldn’t ask them to take off work all the time. “The day the neurologist told me I had ALS,” she remembers, “I was there all by myself.” That neurologist, who eventually became one of Sunny’s close friends, later told her that she felt so bad giving her that diagnosis when she was alone, but, says Sunny, “she just couldn’t let me walk out without telling me the truth.”

And yet, she says, “The day I got diagnosed was such a relief. It’s absurd to think of it that way, but I had been chasing and chasing and chasing for so long that it was such a relief to have an answer. I didn’t care which umbrella I held as long as I was holding one.”

From there, Sunny dove into the ALS community. Within months of her diagnosis, she was attending clinics and working with the ALS Association by doing walks, attending webinars, and attending the annual Advocacy Conference in Washington, D.C. Since then she has also attended the International Symposium on MND/ALS, which took place in Scotland, and recently applied to attend the upcoming 2019 Muscular Dystrophy Association Conference.

Image courtesy of Sunny Erasmus

And in the midst of all these ALS ups and downs, Sunny has fallen in love, gotten married, adopted many pets (whom she frequently blogs about), and traveled. Yes, there are days when she feels so terrible “it’s not worth the effort of putting on a bra and leaving the house.” Yes, she’s lost almost all her manual dexterity and has to take notes using her phone and voice texting. Yes, her voice has become a lot more monotone as dysarthria looms. And, yes, she walks a bit like Frankenstein, stiff-legged with a wide gait. But she refuses to give up her quality of life.

Image courtesy of Sunny Erasmus

Through and through, Sunny is a people person. Each quarter she attends a clinic with ten to fifteen other ALS patients and their caregivers. She meets with her neurologist, dietitian, social worker, nurse, and clinical coordinator, and the rest of the visit is basically a big party with barbecue and donuts. “To be able to get through all my appointments and visit with other families is huge,” she says. While working on her blog one day, Sunny had the idea for a story-sharing project. She called it #TalkALSToMe. She pitched the idea to her clinic community, and was stunned by how easily people “poured their hearts out.” She shared their stories on her blog and sparked a viral ALS story exchange on Twitter and other social media platforms. It’s rare to read digital content that is at once deeply personal and universally relatable, but Sunny has a knack for it. Witty, wry, and down-to-earth, she finds ways to spotlight the happiness, love, and hilarity hiding in the day-to-day struggles of ALS.

When she first published her blog, Sunny could not imagine the widespread impact it would have on the ALS community. When she had to quit her job three and a half years after her diagnosis, it was a blow, to put it lightly. But since then she has thrown herself into the ALS community, and she has come to the realization that using her blog to reach others in the ALS community is her calling. “It’s a really sucky club to join but it’s a wonderful community to be a part of,” she says.

The granddaughter of an ALS patient, Emma Comery is a Writer and Social Media Contributor with a passion for spotlighting amazing humans and writing stories that both inform and inspire.

SimpliHere is a mobile app startup that simplifies caregiving for those impacted by ALS and other neurodegenerative diseases.