Weathering the Storm

I’ve sat down to write so many times these past few days, wanting to find the words, needing to let them out but instead of sentences, I find only tears.

It’s one thing to know, accept, and navigate life with a spouse who lives with debilitating chronic pain. It’s another to hear the words that not only give that pain a name but also attach it to a life sentence…terminal condition…no cure.

Those words swirl in my head until I feel dizzy, nauseous, and untethered.

Some days, I feel like I’m gasping for air, desperate for something solid to hold on to. Other days, I am centered and dive into research mode looking for loopholes, searching for hope, asking every “what if” question I can think of. Using ChatGPT to play devil’s advocate, coming up with alternative solutions, hoping I might stumble across something that offers a different ending to this story.

Conversations about wills, estate planning, finances, long-term disability, and compassionate disability have become part of our daily reality. We’ve touched on some of these topics before, but now they’re no longer distant “someday” discussions.

They’re urgent, immediate preparations not for an eventual far-off future, but for an all too soon goodbye. Each word lands like a stone in my chest, heavy with the weight of an ending rather than the promise of a future.

I want to be strong for my husband because I know he’s scared too but some days, strength feels like an act, like I’m holding up the sky with my bare hands.

There’s no silver lining in this…no amount of reframing can change the fact that this journey will be long, brutal, and will end in the loss of my husband. The truth and reality of that is sitting heavy in my chest today…

Today, I’m learning that weathering the storm doesn’t always mean being fearless, tough and impenetrable. Perhaps, if only for today, it means allowing the waves to knock me down, slowly standing back up, feeling soaked and breathless but still here…showing up in the mess of it, and holding on to every moment for as long as we can.