In the age of “cancel culture,” where snap judgments and public shaming abound, the journey from stigma to compassion is often fraught with challenges. I live with attention-deficit/hyperactivity disorder and bipolar II disorder, am a wife to a person with hemophilia, and formerly co-owned a business run…
In a recent conversation with my husband, Jared, he dropped a bombshell. If he were given the chance to be rid of hemophilia entirely for the rest of his life, he said he’d hesitate to take it. He’d actually miss his current life with severe hemophilia B. My…
My husband, Jared, and I have written about the limited supply of clotting factor IX in the Philippines, where we live. Lately there’s been a greater shortage of that factor, which treats hemophilia B patients such as Jared. That cast a shadow over our hemophilia community’s recent annual…
I recently came across a thought-provoking video featuring Betty Reid Soskin, a remarkable 102-year-old woman with a unique perspective on marriage. Throughout her long life, Soskin has embraced various roles, including daughter, wife, mother, casual songwriter, and, perhaps most notably, a ranger with the National Park Service until…
My favorite band, Fall Out Boy, has a song titled “The Kintsugi Kid (Ten Years).” Now that I think of it, my husband, Jared, and I celebrate 10 years together this April. In my eyes, he’s the “OG” Kintsugi Kid. Jared once wrote an article for…
As a “HemoWife,” I’ve become intimately acquainted with the intricate dance between physical and mental health. In recent columns, I’ve delved into the journey of navigating my husband Jared’s hemophilia alongside my own anxieties and explained how the two are connected. But mental and physical health are…
As my 30th birthday approached, I found myself grappling with a whirlwind of emotions. Unlike my husband, Jared, who greeted his own 30th with gratitude for another year of life, I was consumed by crippling anxiety. The looming pressures of being a mother and caregiver — Jared has…
My husband, Jared, and I have been binge-watching “House” lately. Watching this mid-2000s medical drama as a couple living with chronic and mental illness is a fascinating experience, since we’re no strangers to hospitals and medical procedures. One of the episodes we found compelling featured a…
I’ve always had a naturally good “firefighter mode.” As a child, I was inventive and resourceful. If I accidentally left my homework at home, I could do it over in minutes. In high school, I was the go-to person for completing group projects under pressure. This pattern continued well into…
It’s infusion day again! Pens, inks, and assorted notebooks leave our bedroom work desk to make room for a makeshift medical setup. Medicine vials, alcohol swabs, and needles take their place. For my husband, Jared, who lives with severe hemophilia B, this is more or less a monthly routine.
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