How I’m striving to be happy, and succeeding, years after a loss

I’m happy. That’s the best way to describe my state at this stage of my life.

When my husband, Aubrey, passed away on May 22, 2022, my whole world was stirred and uprooted. He’d been diagnosed with hereditary ATTR amyloidosis in 2013, and his disease journey took us through various challenges. Because supportive and targeted treatment was lacking, he was left to figure out his care pathway largely by himself, although some caring health practitioners tried their best to help him.

Unfortunately, we lived in New Zealand, where we had trouble getting updates on the latest medicine within the ATTR space. That led us and other patients with amyloidosis to seek help from either overseas specialists or Google.

The association I now helm, New Zealand Amyloidosis Patients Association, advocates for positive change here. Since our launch in 2019, we’ve been able to see clinical trials established. Soon, we hope, our government will approve and fund targeted treatment.

Recommended Reading

May 6, 2024 News by Patricia Inácio, PhD

Long-term Onpattro treatment prevents disease progression: Study

A widow’s life

As for me, I’ve started afresh as I plod my way through my work and personal life. After being a wife for over 26 years and a caregiver for nine, I felt destabilized by Aubrey’s death and was propelled forward from the familiar into the unexplored. Almost two years have passed, and I’ve not only learned to secure myself financially, but also to accept that finding myself in this new season is more important than holding onto the past.

Widowhood is a peculiar state of being. When a spouse passes, it’s inevitable that widows will feel almost limbless, as if a crucial part of themselves is suddenly gone. However, they only realize how vital that part is when it doesn’t exist. At least that’s my experience when I lost Aubrey.

Once I came to terms with what I lacked, I could find a space to replenish the parts of myself I’d built through my years as a wife. I had to visit with myself and figure out how to be happy again.

I had to accept that parts of my life that provided familiarity and comfort no longer existed, to a considerable degree. That included some friends I spent many hours with, confiding my feelings, when Aubrey was alive. Now they seem to have distanced themselves or fallen completely off the grid.

I believe this process is typical for many, though everyone grieves differently. Some people draw close while others step away. There’s no malice intended; perhaps it simply hurts too much. That’s understandable. We all have to find a remedy to soothe our loss.

Closure after the death of a loved one is a misconception. There’s no such thing as closure here. We’ll live the rest of our lives remembering the departed. The pain will gradually ebb, but we’ll never close the door on them. We’ll pay tribute to their memory by pushing forward and living the way we know they’d want us to carry on.

I know Aubrey would’ve wanted me to be happy. He’d have liked to see me laugh, dance, and be at peace with no longer having him around. That’s precisely what I’m striving to do, and I’m getting there.

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.