A year later, I’m ready to move forward after the loss
Considering my next steps after hereditary ATTR amyloidosis took my husband
This column has been a year in the making.
When my late husband, Aubrey, passed away in May 2022 from hereditary ATTR amyloidosis, I couldn’t articulate my thoughts and feelings to paper or screen. Instead, my mind was filled with questions about how to move forward as a 51-year-old widow.
I contemplated all sorts of changes, such as selling our house, moving countries, getting a new job, and even giving up my role as the patient advocate for the NZ Amyloidosis Patients Association here in New Zealand. Expressing my experience as a caregiver fell to the bottom of the barrel of my priorities. I was lost, not knowing who I must become now that I was single again after 26 years. The last thing I wanted was to write something that readers couldn’t relate to.
But given time, I now have more clarity about my purpose as I move forward. I must not give up on my ambition to see my organization attain funded medicine for patients. I also know some caregivers face challenges that I can empathize with and extend a hand to support. As for my column, FAP News Today provides me with a writing outlet to connect with readers while expressing myself. It’s a safe space for cathartic healing through narrative.
The nine years of caring for and supporting my late husband changed me. I’ve been transformed, partly by force, from a meek and accommodating spouse to someone who’s become unyielding and uncompromising. I fought to ensure Aubrey could stay alive as he grew weaker in health.
Seeing that treatment opportunities for his disease were available in the U.K., U.S., and elsewhere filled me with the hope that if I pushed harder and got louder with the people who could help, Aubrey stood a chance for survival. I couldn’t become powerless and ineffective because that would mean I’d given up on him, just as the physicians had.
In retrospect, I’ve lost my ability to be openly vulnerable with people. There’s a hard shell now that I want to soften and discard. I want to sincerely love and care again, without fear of being hurt another time.
The author C.S. Lewis said, “Getting over a painful experience is much like crossing monkey bars. You have to let go at some point to move forward.”
I desire to move forward, just as Lewis says. That starts with allowing myself to ride the emotions as they abruptly swell and loving myself like never before. It also begins with trusting that there’s a creator who cares for me and has a plan for me. I know that, gradually, I’ll be able to find that joy and laughter again. Soon enough, all will be well with my soul.
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.