Now That the End Is Here, I Think Everything Will Be All Right

I am sitting across from my husband, Aubrey, who’s on his last leg of life with us on earth. When I look at him, I see a man who has come to terms with the finality of his situation, but wishes that his failing body could keep up with his mind, as he’s still conscious and acutely aware of what is happening to him.

Since he was diagnosed with hereditary ATTR amyloidosis in 2013, Aubrey and I have tried to learn everything we can about the disease. Although treatment options have advanced in recent years, they’re not readily accessible to us here in New Zealand. We are the casualty of our environment. I believe our situation would be different if we lived in the U.S. or the U.K. Aubrey might still be enjoying time with our children and me, and not lying on a hospital bed dying.

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But thinking about what-if scenarios does no justice to what is now happening. Watching Aubrey’s final days play out weighs on me like a heavy anvil, pressing against my soul.

In the privacy of my mind, I’ve envisioned multiple sequences of events to prepare me for the many possible scenarios of how I might lose my husband. Like a playwright obsessed with sad endings, I’ve kept at it to prepare for the real thing. But now that the real thing is here, it’s nothing like what I anticipated. It has been far less dramatic, but so much more devastating than what I could have imagined.

I don’t share this to erode the hope that caregivers have for their loved ones, or to emphasize the futility of this terminal condition. I write because you should know that I feel heartache I’ve never felt before at this crossroad where I find myself. I oscillate between feeling unfailingly erudite and calm, and overwrought and destitute. I imagine this will be my reality for some days to come.

But in this pain, I also see strength in myself that I never thought I had. I assumed that every ounce of my resilience and perseverance would be depleted by now.

Holding Aubrey’s hand. (Photo by Jaime Christmas)

I once saw myself as driftwood, carried away to wherever the waves took me. Now, I’m becoming more like the conductor of an orchestra. All the tears, laughter, disappointment, gratitude, and sorrow come together as a cacophony of accents and vibrations. I interpret each sound bite and transmit the unified music to my audience.

When the final curtain is lowered, there will be purpose and soundness to all the madness. We can never plan for this haphazard process, but no matter how upsetting the experience is, we must embrace it. Eventually, we will see the light at the end of the dark tunnel.

For now, I will hold on to people, beliefs, and things that give me strength. I think everything will be OK one day.

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.