On fountain pens, pain, and finding balance

I made it to the Manila Pen Show here in the Philippines, and I couldn’t be happier! There’s something deeply satisfying about being in a space filled with fellow enthusiasts, surrounded by exquisite writing instruments and vibrant bottles of ink. For me, collecting fountain pens is more than just a hobby. It’s a way to slow down, be intentional, and appreciate the art of writing.

But as always, something about the experience reminded me and my husband, Jared, of hemophilia.

On the way to the event, Jared, who has severe hemophilia B, felt a sharp pain in his ankle. But it wasn’t a bleed; it was a gout flare! He’d eaten too many nuts the night before, and now it felt like tiny shards of glass were lodged in his ankle joint.

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I watched as he acknowledged the pain, processed it, and kept moving forward. We took the metro rail, then walked to the venue since there wasn’t a stop directly in front of it. Every now and then, Jared let out a nonchalant “Ouch!” as the crystals in his ankle crunched. Despite this, he still managed to climb footbridges — and even skip alongside our daughter!

Gout flares can be incredibly painful, often making it difficult to stand or walk. Yet Jared kept going. After years of having joint bleeds, he has learned to compartmentalize pain. He recognized its presence but refused to let it control him. Bleeds are unpredictable and show up in different ways. Over time, many people with bleeding disorders learn to assess their pain, distinguishing what needs immediate attention from what they can tolerate, and what they know isn’t harmful in the long run.

The gout flare subsided the next day.

Balancing control and enjoyment

My “just one pen” for the day.  (Photo by Jared Formalejo)

This year’s pen show felt extra special, as it was our daughter’s first time attending. She was thrilled by the beautiful pens and even got to hold and use a $400 pen. She immediately put it to use by drawing hearts. Watching her in that moment made me think about the balance between responsibility and simply letting loose.

With hemophilia, life often revolves around careful planning, such as timing infusions, avoiding injuries, and preparing for emergencies. But just like how I trusted a 6-year-old to handle an expensive pen, knowing that I had taught her to handle fountain pens in the past, people with hemophilia also have to trust themselves (and caregivers need to allow them that trust).

How much risk is acceptable? How much freedom can they allow themselves while staying safe?

Even I had my own moment of indulgence. I had promised myself I’d buy just one pen to save money. But after the event, I found myself messaging a pen vendor to buy another. Sometimes, saying yes to joy feels just as important as being careful and controlled.

Living intentionally

I’m a strong advocate of intentional living, and Jared’s approach to pain and my experience with fountain pens both remind me of its importance. Whether it’s selecting the perfect pen or ink, deciding whether to push through pain, or balancing safety with enjoyment, everything requires awareness and decision-making.

Sometimes it means making careful, calculated choices. Other times, it means allowing yourself a little joy — whether that’s buying an extra pen or walking through pain to experience something meaningful. At the end of the day, it’s about finding a balance that works.

Note: Hemophilia News Today 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.