This Author's RA Story Is a Very Good Read
In our latest #HappyTears profile, Erik Henry Vick shares the moment he decided to fight back against rheumatoid arthritis.
Books about rheumatoid arthritis (RA) tend to focus on managing pain and conquering the condition with everything from yoga to anti-inflammatory Crockpot meals.
Not Erik Henry Vick’s books.
The 52-year-old from Penfield, NY, is the author of more than a dozen horror and dark fantasy novels that manage to incorporate serial killers, Norse mythology, and a protagonist named Hank who loads up on pain medications and pistol ammunition before leaving to fight red-eyed fire demons and rescue his family from cannibals.
The story of how Vick, a career college professor with a Ph.D. in artificial intelligence, became the writer of books that blend shimmering portals into unknown evil lands with a main character with RA is quite the page-turner. In 2003, he was in his late 30s, teaching digital media at the University of Central Florida in Orlando and developing video games like Madden NFL on the side, when he first began experiencing symptoms. One morning he woke with pain in one shoulder. A devout side-sleeper, he chalked it up to bad positioning. A few days later, the pain jumped to the other shoulder, bad enough that he couldn’t lift that arm above chest-level. This time he blamed a heavy gym workout.
After a month of powering through the pain, Vick was dressing for work when “lifting my arm to apply deodorant hurt so badly that it brought tears to my eyes.” His wife, Melissa, said: “You’re going to the doctor today.”
His general practitioner ordered X-rays and bloodwork; nothing out of the ordinary turned up. Vick was diagnosed with bursitis, an inflammation of the fluid sacs in the shoulders, and prescribed a steroid. It worked; the pain lifted. And when the discomfort returned three or four times annually for the next two years, it kept working.
Then, like magic, the pain stopped for three years. It was the fall of 2007 and Vick, his wife, and their four-year-old son moved to Rochester, NY, happy to leave the pain behind.
But in 2008, the ping-ponging shoulder pain resurfaced, now radiating into his elbows. Vick also began experiencing what he nicknamed Batman neck—neck and upper-back pain that prevented him from turning his head left or right. Because his bloodwork was still normal, a rheumatologist diagnosed him with inflammatory arthritis, an umbrella term for several types of arthritis. Vick tried several medications, but none were magic bullets. His pain persisted.
Life Became Like a Train Wreck in Slow Motion
Vick was 41 and struggling mightily. It was the second half of the 2008/2009 school year and he was teaching game design and programming at the Rochester Institute of Technology. Along with chronic exhaustion, “I would get these intense bursts of pain in my shoulders and neck while lecturing—I called them “bubbles”—that would be so disorienting that I’d need to look at my teaching assistant to remind myself where I was.” His knees, ankles, wrists, and hands began to ache. Vick’s voice box was impacted; he’d lose his voice without warning, sometimes mid-sentence, his loudest yell reduced to a hoarse whisper. Eager to accommodate their professor, the university hired an ergonomics expert who set Vick up with “the Cadillac of powered sit/stand desks” and chairs of varying heights “which I could adjust to help whatever joint was screaming at the time.”
Life outside the classroom was “like a train wreck in slow motion,” Vick says. His beloved hobbies—weightlifting, woodworking, bicycling—were no longer viable. Roughhousing with his son? Off the table. A car fanatic who loved building and restoring hot rods, Vick couldn’t use a wrench without pain searing through his hands.
When recounting these memories, Vick grows emotional to the point of tears…not only because he saw many of his greatest sources of joy slipping away, but because of how Melissa responded. “She bought me special wrenches that are made in a way that no narrow edges press against your fingers or palms, for less pain.” When getting down under the Corvette became too difficult, “Melissa brought me a chair and told me to sit in it and tell her what to do.”
Melissa also proposed a new ritual; going for long drives, something she had long enjoyed doing. Together, they would explore the nearby picturesque Finger Lakes, the countryside dotted with old churches and Amish farms. With rockabilly and swing music playing, they would “talk a lot, look at pretty things and solve the world’s problems with our long conversations,” she describes. The couple began calling these drives “SUV Therapy.” And Vick began calling his wife “Supergirl,” a nickname that has stuck to this day.
Dealing With “Big Pain” Led Him Down a Dark Path
One day in early 2010, while researching arthritis online, Vick discovered a HealthCentral.com forum led by Lene Andersen, a patient advocate who has lived with RA since childhood. Something Andersen wrote stopped Vick in his tracks: “Rheumatologist aren’t people sitting up on a throne. They work for you, and you should interview them like you’re interviewing someone for a job.” That resonated with Vick, who believed his rheumatologist excluded him from decision-making. Plus, “he had a very conservative, slow-moving style of medicine and when you’re in Big Pain every day, you want the fastest doctor you can find.” That doc also didn’t seem to appreciate Vick’s jokey personality. (His sense of humor is such that, when Melissa asks him to “put anything you want me to get at the grocery store on the shopping list,” he will literally write, “Anything you want me to get” on the notepad.) “I would crack jokes and he’d just look at me, not even smile, and keep talking.”
Vick ditched that rheumatologist and found one he clicked with immediately, Darren Tabechian, M.D., who's with the University of Rochester Medical Center. Based on his symptoms (but not his bloodwork; yup, still seronegative), Dr. Tabechian tweaked Vick’s diagnosis to rheumatoid arthritis and, over the next several years, they tried “the standard autoimmune dance card of different biologics, trying to find one that worked.” One medication did finally bring relief, but his liver function tests foretold impending organ damage. Other than that, nothing eradicated, or even greatly lessened, his pain.
In 2011, during what Vick calls “a very dark, emotional time,” he went on disability, spending days in an overstuffed La-Z-Boy, reading and binge-streaming shows like NYPD Blue and Doctor Who. He only left the house for doctor visits or infusions. When his hands hurt too much to feed himself, Melissa cut his food and fed him. “I had gone from being one of the strongest guys in the room to feeling like an infant.” In retrospect, he thinks he was depressed.
Reading Fiction Inspired Him to Start a New Chapter
That same year, Vick was reading the Dark Tower series by Stephen King, an author whose stories had always succeeded in transporting him to a different world. Vick, who had loved writing ever since childhood, started to think about how King’s dystopian landscapes and murderous characters shared a number of qualities with his RA, which “can feel like a ravenous, wild thing when uncontrolled, a monster only an exorcist can deal with.”
Something clicked. “I decided I didn’t want to be passive about being sick, and I wanted to stop feeling like a drain on everyone. So I decided to fight.” Vick wanted to create a plotline that transported people to other worlds while also teaching them about so-called “invisible disabilities” like RA. Horror and dark fantasy seemed like the perfect fit, he says, “because my mind was always going to these dark, scary places because of the pain.” The main character, Hank Jensen, is cursed by a Norse goddess with a painful disease very reminiscent of RA. Hank refers to his pain as his “Personal Monster,” and Vick began doing the same thing in real life.
Melissa, who works in software development, helped Vick create a writing space consisting of a souped-up La-Z-Boy (hip and tailbone pain ruled out hard chairs) with a swing-arm keyboard that can be moved exactly where he needs depending on his pain level. On days when his “Mickey-Mouse hands” made typing impossible, he used speech recognition software that transformed his voice into typed words. (So long as his Personal Monster hadn’t stolen his voice that day.)
Writing fiction, Vick says, was his first step toward taking back his life.
“Writing about my RA as if it were happening to someone else was cathartic and therapeutic. Hank showed me places in my own life where I could fight. It felt like opening a mental faucet for me.”
Another bright spot occurred in December of 2013, when Vick went back to a treatment that had worked before. The idea was sparked by a HealthCentral.com post Vick had seen and shared with Dr. Tabechian. Written by someone with RA who had similarly experienced significant pain relief but elevated liver enzymes, “they wrote that they went off it, waited a while, tried it again, and their liver was fine.” Blessedly, that same phenomenon happened with Vick. “My flare finally broke. Being Batman decreased a lot. My hands and feet still hurt but the ping pong thing in my shoulders finally stopped. I went from having 100 percent bad days to a mix of bad, good, and OK days.”
His “good days” weren’t all that good—he recalls explaining to his insurance company that “my good days are a healthy person’s worst days”—but he could walk one or two blocks for the first time in years. He began driving a bit, doing some grocery shopping.
His writing game remained strong, though occasionally the pain would recur, keeping him away from his novels for weeks on end. When that happened, “Supergirl encouraged me to keep going, because she knew how much better I felt when I wrote. It was my way of poking my monster in the eye with a sharp stick.” His first book, Errant Gods, was published in 2018.
A New Condition Dealt Him a Horrible Blow
That same year, his meds stopped working and Vick switched to yet another, which seemed to damp down his RA symptoms. But his body had other plans.
“Out of the blue, I started getting new left hip pain,” he says. Blaming his trademark Norwegian stoicism (the 6’3” Vick frequently refers to himself as a “big, dumb Viking,”) he admits he used crutches and “kind of ignored it.” But after a month of being unable to sit, stand, or lie down without “massive amounts of high-intensity pain and lots of pain meds,” Melissa had had enough of watching him struggle and sent him back to the doctor. Nobody expected what they found.
An MRI revealed avascular necrosis (AVN) of the femoral head, a mouthful of a condition that essentially means a part of Vick’s femur died. It’s rare (10,000 to 20,000 new cases annually in the United States); incurable without a hip replacement; and treated by going zero percent weight-bearing for at least a month.
Doctors don’t know why Vick developed AVN—it’s more commonly seen in people with alcoholism or who have abused anabolic steroids, neither of which applies to Vick. One of Dr. Tabechian’s theories is that he may have developed a blood clot that caused the AVN.
Vick spent the next three months “trapped in a wheelchair,” muscle spasms in his legs causing “screaming-severe, round-the-clock, 10-out-of-10 pain.” Melissa tended to him, applying hot packs and massaging his legs for hours while also taking care of their son, their 100-pound Rottweiler, Tor, and their two cats. Vick says they don’t recall much of February 2019. “I think we have PTHD: Post Traumatic Hip Disorder.”
Occasionally, Vick managed to keep a sense of humor about things. In a blog post from March of 2019 titled “Meet My New Friend Johnny,” he introduced readers to his new walker: “I call him Johnny (as in Johnny Walker), and despite still needing the chair at times, I've enjoyed long walks (current record is eighty steps) on the beach (well...from my recliner to the bathroom, sometimes taking a detour through the kitchen).”
In September, the AVN returned, this time in the right leg. Like February, that month is a blur of misery.
2020 Will Be a Year of Recovery
Vick is back on yet another treatment combo, and still battling his shoulder pain. Like many people living which a chronic medical condition, sheltering-in-place hasn’t been all that different from regular life. Supergirl works from home. Vick spends one to three hours a day writing, a tube of Bio-Freeze always close at hand. The family is using this year to recover from the AVN tumult of 2019. “It was hard for my son and I to hear the kind of pain and agony he was in,” Melissa says. “In a way, RA is almost less of a big deal now compared to that.”
So they’re taking things day by day. They order in a lot. Vick has a new book series based on some of the more bizarre, medication-induced thoughts he had while in the wheelchair. (The main character is a cop who’s hit by a bus driven by a werewolf, then gets a new partner who’s half-vampire, half-succubus.) A nice night at home is takeout from a steakhouse and a movie. “With RA, it’s always about what you can’t do,” Melissa says. “Now, we’re trying to appreciate what we can do.”