How feelings of gratitude for the past are helping me move forward
I'm grateful for the many years I spent with my late husband, Aubrey
It’s another stunning summer day here in New Zealand’s Waikato region. We’ve been blessed all week with clear skies and a warm breeze blowing through the house, as the blinds are drawn up and the backyard doors are open.
View of the Waikato region in New Zealand. (Photo by Jaime Christmas)
Since moving to a new region and leaving the house where I lived for almost 17 years, I’ve experienced the pleasures of new beginnings.
For nine years, I was a caregiver to my late spouse, Aubrey, who was diagnosed in 2013 with hereditary ATTR amyloidosis. This disease can affect multiple organs in the body, eventually causing them to fail. Together, we journeyed through the ups and downs of his illness.
Aubrey carried a Val47Met variant of the TTR gene. In our experience, this particular variant seems to cause men to develop the disease in their early 50s, and women in their 60s.
Aubrey started showing early symptoms just before his 49th birthday. Despite our hopes for targeted treatment opportunities, he passed away due to complications of hATTR amyloidosis on May 22, 2022, one month short of turning 58.
In the few months before his passing, I could tell that he was reaching his breaking point. Peripheral neuropathy caused him excruciating pain in his neck, hands, and feet. The discomfort kept him up at night, and while the sleeplessness was a big problem, it was the gastrointestinal issues that completely wiped him out.
As I sit and bask in the glory of my newfound happiness, I write this with a grateful heart tinged with sadness. I am thankful for the 26 years I spent with Aubrey. We faced challenging times together, and no matter the outcome, I am blessed to have been with someone who tried his best to provide and care for his family.
Aubrey was intelligent, funny, and full of faith. He enjoyed nothing more than chatting people up and finding commonalities in their experiences. He helped many people in his professional career. After he passed, the messages I received painted a picture of a man who cared, gave, and made others feel like they mattered.
I also cannot help but feel saddened that his life was cut short by an incurable disease. Our children were robbed of their father, and I lost my lifelong partner. However, it does me no good to remain under the heavy cloud of grief. I’ve chosen to step into the glow of life’s light, since that is what he wanted for me: to live life to the fullest in remembrance of him.
As Danish author Hans Christian Andersen wrote, “Just living is not enough; … one must have sunshine, freedom and a little flower.”
Indeed.
Note: FAP 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 other 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 FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
About the Author
Becky Peters
Thank you Jamie. I am a newly diagnosed hATTR patient and regularly worry about my partner. He is so very caring it makes me cry! We are very fortunate to be living in Australia where we can focus on relief and treatments. My family in the USA will face many more financial concerns if their results are positive. At the moment a big part of my life is disease acceptance, potential progression and periferal neuropathy pain. Any recommendations would be appreciated! All the best. Becxx