I have previously written about the importance of staying positive despite our circumstances. Whether you are a patient or a caregiver to a loved one with a chronic illness, keeping yourself above the waterline to avoid drowning in your circumstances is essential. As the legendary basketball player Michael…
This column will be my 94th since starting “Sunrise, Sunset.” My caregiving experience has taken me through many ups and downs and countless joys and heartbreaks. I’ve had to reset and reestablish my footing many times. I’ve learned that situations don’t last forever; whatever phase I find myself…
Late last week, to drive disease awareness, I took to the streets in downtown Auckland, New Zealand, and asked random people if they had heard of amyloidosis. None of the 15 strangers who were kind enough to answer my questions had heard of it. This does not surprise me…
It’s been over four months since I lost my husband, Aubrey, to hereditary ATTR amyloidosis. The vacuum he’s left behind in the lives of our four children and me may not be immediately apparent, but one only needs to dig a little deeper to see how much we…
Life is full of twists and turns. I was a caregiver for nine years until this past May, when my husband passed away from hereditary ATTR amyloidosis. Aubrey was diagnosed in 2013, and despite the many challenges we both faced, we never once thought to give up. Unfortunately,…
I recently attended an amyloidosis scientific conference in Heidelberg, Germany, that was a productive and empowering experience. As a former caregiver to a spouse with hereditary ATTR amyloidosis and a patient advocate with New Zealand Amyloidosis Patients Association, learning about the advancements in the field of disease…
Two weeks after the passing of my husband, Aubrey, my four children decided that the company of a new puppy would be the best way to cheer me up. Looking back now, almost four months after Aubrey left us on May 22, Akira — an…
By the time this column is published, I will be halfway across the world, traveling to Heidelberg, Germany, for the International Symposium on Amyloidosis. It will be the first time I attend an international amyloidosis conference as a patient advocate leader without my husband alongside me. Sadly, Aubrey…
In my columns, I share my experience as a caregiver to a spouse who suffered from hereditary ATTR amyloidosis. Whenever I sit down at my desk to write, I say a little prayer that my stories will comfort readers, no matter the topic. I hope that others feel…
After I finish writing this column, I will meet a few friends for dinner. But socializing without my husband beside me still feels foreign. Mary-Frances O’Connor, an associate professor of psychology at the University of Arizona, describes the grieving process as a way of learning how to be…