A couple weeks ago, we wrote an article about the role of Colton’s Cystic Fibrosis foundation in this season of The Bachelor. Since my terrible TV taste is now revealed to the world at large, I thought it’s worth discussing another rare disease that was spotlighted by contestant, Caelynn, on this most recent episode– encephalitis.
First, I want to back up for a second and discuss Caelynn. Caelynn Miller-Keyes, is, at the moment, one of this season’s front runners. Colton obviously likes her, and she comes off relatively calm in the extremely stressful reality TV environment. I think she’ll make it to the final four. She’s from Virginia, but has been crowned Miss North Carolina, and was first runner-up for Miss USA. The show has been building a sub-plot conflict between her and another pageant queen / rival, and while she’s explained in her interviews that her and the other pageant girl have a rocky history, she hasn’t complained about her to Colton. This is always a wise and admirable move.
She studied broadcast journalism in college, but is currently, or at least at the time of screening, working full time as Miss North Carolina USA. If you, like me, have absolutely no understanding of what that entails because you only understand the pageant circuit as it appears on three episodes of Toddler and Tiaras that you watched at the gym, it involves different speaking engagements and appearances. One of her primary focuses is advocating for survivors of sexual assault, but she also visits children’s hospitals and spends time with patients and their parents, which she explained to Colton, who also visits children’s hospitals, on the most recent episode. She shared that her interest came from her own personal experience– she, too, spent time in the hospital as a child, due to encephalitis.
Children’s Hospitals and Hope
Encephalitis is an inflammation of the brain. It’s relatively rare in the US, and while severity can vary, it can be fatal.
Colton asked how old Caelynn was when she was hospitalized, and she told him she was only two. The friend I was watching the episode with and I were surprised– two years old is so young; we figured she could hardly remember it anyway. The longer I thought about it though, the more I considered what we didn’t know about how this impacted her life– how it affected her parents, how that changed the way she saw her health. Her parents were told that she probably wouldn’t survive the inflammation, and if she did, there would only be a 10% chance that she would walk again. While Caelynn recovered far better than the hospital anticipated, anyone can imagine the lasting trauma and lingering mark this would leave on a family.
It’s also important to celebrate the recoveries that happened against all odds, like we grieve the losses of families with rare disease. There are countless families across the country experiencing the same fear that Caelynn’s family went through. When a parent is told the odds are against their child’s survival, it’s easy to feel hopeless, to imagine only loss. And it’s possible that loss can happen. But stories like Caelynn’s highlight the other possibility– even with bleak odds, there’s still a chance the child will push through. There’s a version of the story that really happens, where they surprise the doctors, where they learn to walk again. This other story– Caelynn’s story– is playing out on screens across the country, giving a face to the hope, perseverance, and luck that lets a child grow up, go to college, fall in love,go to dates in Japan, visit children’s hospitals, and tell other parents about the time the doctors said they wouldn’t make it either.