Hello, Adversity: Introducing Chris Anselmo
“Hello, Adversity” author Chris Anselmo is a new contributor to Know Rare.
By Laura Will
There is a lesson embedded in the name of Chris Anselmo’s website: “Hello, Adversity.” He is encouraging us to turn towards our adversity and greet it head-on. This simple, courageous act illuminates a route through the turmoil and towards acceptance, connection, and comfort, even amid the uncertainties of a fast-progressing diagnosis.
“It’s not the case that people just handle adversity perfectly…anybody who tells you that they're not dealing with adversity or that they've conquered it, I've come to learn, is lying or deluded.”
Chris describes himself as having lived “two distinct lives”: the first, enjoyed within a somewhat typical childhood; and the second, sculpted within the challenges of an adult-onset degenerative muscle disease called limb-girdle muscular dystrophy type 2B.
Chris’s rare disease diagnostic journey is quite unique. During his senior year of high school, he was in a car accident that sent him to the hospital. When the emergency room clinicians discovered extremely elevated levels of creatine kinase (a blood enzyme that indicates muscle injury), they were worried that he had sustained a potentially life-threatening internal injury. But he remained stable, and other tests came back normal. No longer acutely concerned, Chris was discharged but began a diagnostic journey. About a year later, he received his rare muscular dystrophy diagnosis. He had yet to experience any symptoms, and he was young and athletic, so he headed off to college without giving the disease a second thought.
Four years later, as his college graduation approached, Chris started to notice his legs burning at the end of his regular running sessions. He reconnected with a neurologist who confirmed the earlier diagnosis, and, for the first time, Chris was made aware of the terrifying timeline of his disease. He’d be in a wheelchair in five to ten years.
Upon hearing the news, Chris admits, he made “every mistake in the book in terms of how to handle it.” Shocked, he shut others out, envied his peers, and could only see the opportunities lost to him. In terms of coping strategies, Chris says he became a “crash test dummy.” I, for one, am grateful for his willingness to test, crash, test again, and tell us the tales.
“I had to figure out how to reverse-engineer the goals I had prior to diagnosis, knowing the level of strength that I now lived with. I had to force myself to find the path. And in doing that, I realized there was still a lot I could do.”
Six years after symptom onset, Chris decided to go to business school. As his arms lost the strength to carry his backpack, he was forced to start looking to those around him for help. As he found himself using a wheelchair more and more, Chris began grappling with the frustration, grief, comparisons and fears he had avoided dealing with up to that point. As he faced the ups and downs of life and said “hello” to his adversity, Chris’s everyday lived experience shifted in empowering ways.
“I’d like things to be stable and predictable, but that’s not going to happen. I’ve learned how to deal with change, how to adapt to circumstances, and how to be comfortable with uncertainty. I don’t do it perfectly, but I’ve also learned to give myself some slack.”
He has become a master of gleaning wisdom from his lived experiences. Chris guides his readers through the tough stuff of life—both the monumental milestones and the daily grind. Without coming across as preachy or jaded, Chris provides wisdom for a wide audience in a balanced way, weaving in uplifting truths without downplaying the challenges.
Know Rare is thrilled to be partnering with Chris Anselmo, author of “Hello, Adversity,” as he becomes a regular contributor to our platform.