Why I’m capturing moments of my life in photos and video
If I ever forget what I've been through, these efforts will help me remember
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 “What you have caught on film is captured forever. … It remembers little things, long after you have forgotten everything.” — Aaron Siskind
While standing outdoors surrounded by nature, I watched the leaves move in the breeze and felt drawn to photograph golden petals in the sunlight. In that moment, I felt a deep sense of wonder, as if time had stopped and I could really see the beauty around me.
Every photo I take tells a quiet story and brings me joy. If you’ve read my previous columns, you’ll know how much I love capturing and saving these moments. They help me remember the life I’ve lived.
Because hypoparathyroidism gives me brain fog, I take many pictures to help me remember things. Looking at these photos helps me deal with memory lapses and stay connected to my life.
A pleasant surprise
The last time I saw my dad, I celebrated his final birthday with him. Instead of taking photos, I ended up recording the moment. I caught his bright eyes, his laughter, and his big smile. It happened by chance, and I’m so grateful for it.
Watching that video comforts me. I wish I had more recordings, because seeing how Dad moved makes me feel like he’s still here. And his voice and smile help me on tough days.
That accidental video made me wonder how we really hold on to the people we love, and what it means to remember them. I started to think about whether remembering is about the exact details or more about the feelings that come back when we see or hear them again, even on a screen.
Now, instead of taking only photos, I also record videos of the people around me. This change shapes how I save and remember moments today.
I want to remember more than faces. I want to hear voices and see real expressions, even when people don’t know I’m recording. Videos capture moments in a way photos can’t.
Documenting me
Lately, I’ve been thinking about legacy and how, someday, my kids might cherish hearing my voice or learning about the challenges I kept hidden. It feels meaningful to leave behind stories.
Since I’ve had some memory problems lately — my neurologist called it amnesia — I decided to record my life on video. If I ever forget what I’ve been through, these videos will help me remember. They might also help others feel less alone. I talk about everything — the good, the bad, and the hard parts. Most of all, I speak my truth.
By sharing on camera my struggles, I hope people watching will feel less isolated and courageous. Maybe it will inspire them to face their own challenges openly.
I believe it’s important to show the real person behind an invisible illness like hypoparathyroidism. When patients see others with similar struggles, it helps them feel understood.
If I could go back to 1998, when I was diagnosed, I wish I had recorded my journey. I don’t remember exactly how I felt, what I said, or the sequence of events that took me from Graves’ disease to thyroid surgery and then to hypoparathyroidism.
I wish I could look back and see what helped me and what didn’t. It could’ve been a guide for others who’ve been diagnosed in the last 30 years.
As the first person to enroll in the first Yorvipath (palopegteriparatide) clinical trial, I underwent numerous dose adjustments up to 60 mcg/day. I handled all of this by myself during the COVID-19 pandemic, when travel to my study site was impossible.
The drug’s subsequent approval and the challenges I faced when I had to change my dosage are a story I wish I could watch and share.
Recently, I visited my son Harrison and made a short video for him about how much the trip meant to me. The next day, he called to thank me and said he would treasure it forever.
As I start another chapter in my health journey while my doctors and I look at ways to improve my quality of life, I want to make sure I document it. Sharing this might help others.
By sharing both the good and the hard parts of my journey, I aim to help other patients make informed choices.
Note: Hypoparathyroidism News is a strictly 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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