The reaction I never expected after seeing ‘Frankenstein’: I feel seen

I didn’t expect a Frankenstein movie to move me, yet here we are.

When I saw Guillermo del Toro’s “Frankenstein” on my birthday, I anticipated tension and a few unsettling moments in the retelling of Mary Shelley’s familiar story with modern effects. Instead, I was met with something less cinematic than I had expected, far quieter, and much more human. This movie didn’t treat the creature as a mindless, murderous zombie. It portrayed “it” more like a “him” — someone struggling to live inside a body he didn’t ask for.

I deeply felt that in a way I wasn’t prepared for.

From the moment the creature appeared on screen, he wasn’t terrifying. He was tender, confused, and lonely. His stitched-together form wasn’t a gruesome punchline or a spooky threat; it was a burden he was trying to understand. His eyes expressed fear, longing, and a kind of exhausted hope that felt familiar to me, even though our stories couldn’t be more different.

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I can’t relate to the creature’s life, but I understand what it’s like to navigate a body that changes without my permission. Living with Friedreich’s ataxia (FA) means entering each new day with a mix of gratitude and grief. I’m grateful to be here, incredibly thankful for the life I’ve built, and sheepishly appreciative of the people who love me. Yet, the truth is that FA never stops; it shifts and progresses over time, demanding more from those who have been diagnosed with it.

Watching the creature struggle to understand his own form reminded me of that reality — not in a dramatic, hopeless way, but in an honest one.

There’s an unspoken rule that people with chronic illness sometimes feel compelled to follow: We should always emphasize resilience, optimism, and inspiration, as if acknowledging something painful might come across as ungrateful. I never want to diminish the privilege of being alive. Honestly, I don’t. But gratitude doesn’t erase difficulty, just as difficulty doesn’t erase gratitude. They coexist, and maybe that’s how it’s meant to be.

The makers of this movie understood that. Surprisingly, the film permitted me to understand it, too.

Making sense of it all

The creature’s humanity was portrayed with such sincerity that it made space for my own. He didn’t apologize for his confusion or loneliness, nor did he pretend his pain didn’t exist. Yet, he also wasn’t defined by despair. In the rare moments when he received kindness, such as when the character Elizabeth taught him her name, something within him softened. His whole expression changed. It reminded me that compassion — both from others and ourselves — makes the burdens we carry feel lighter.

I left the theater thinking about how often we carry feelings quietly, especially when they don’t fit neatly into categories of positivity or sadness. There are days when FA feels like a background hum I barely notice, and days when it feels like a weight I wish I didn’t have to lift. Neither cancels out the other, and both are true.

This “Frankenstein” taught me that being human isn’t about choosing one side of that emotional spectrum. It’s about holding both with honesty.

I’m grateful for my life. I’m thankful to still be here. And yes, it’s hard sometimes. That doesn’t make me ungrateful; it makes me real. The creature, in all his stitched-together vulnerability, reminded me of that truth.

In the end, I didn’t see a monster. I saw someone trying to make sense of a difficult existence while still longing for connection and meaning. Perhaps that’s why the movie stayed with me long after the credits rolled: It demonstrated that even when our bodies feel unfamiliar or unfair, our humanity remains intact. And that, more than anything, is what made me feel seen.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.