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What Time Away From My Husband Taught Me About Love

On April 1, Malaysia’s borders reopened to international travelers following COVID-19-related closures, and I finally had the pleasure of visiting my family who lives there. I hadn’t seen them in more than three years, so after spending two weeks of quality time together, saying goodbye and returning home to…

My Calendar Helps Me Remember Past Medical Events

In my work as a patient advocate for the New Zealand Amyloidosis Patients Association, I occasionally need to assemble content for the awareness projects I’m involved in. Whether it’s a speaking engagement or a mind map diagram for a presentation, I usually highlight setbacks and milestones my husband,…

Taking a Break From Caregiving to Visit Family

After almost three years of not seeing my family, I’m finally back in Malaysia to spend some quality time with my father, siblings, and children. More important, I can receive closure after my mother’s passing last May. I’m challenged by the fact that she wasn’t here to hug me upon…

Feeling at Home at the Hospital

As a caregiver to a spouse with hereditary ATTR amyloidosis, I’ve become familiar with our local hospital. The countless appointments and stays that Aubrey, my husband, has endured since diagnosis in 2013 have allowed me the opportunity to roam the building and acquaint myself with the layout of…

Finding a Path to Wellness for Diagnosed Patients

Having a chronic illness is never easy, both for the sufferers and their caregivers. My name is Jaime Christmas, and my husband, Aubrey, started feeling unwell in late 2012. It all started with numbness in his fingertips, but it wasn’t until he lost his taste for food that he…

It’s Important for Caregivers to Receive Care, Too

As I write this, my husband is in the hospital due to complications of hereditary ATTR amyloidosis. Aubrey, 58, was diagnosed in 2013, and this nine-year journey has been transformative. We both have learned to adapt to an ever-changing health situation and roll with the times. In a past…