That was the assessment of my sister-in-law, some time in 2004. She told me I was difficult to talk to, and I had no idea how to speak to children. There was a longer story than that, obviously, but her words were in my head today. It’s funny how certain things can stick around for decades. I’m not sure we’ve had a conversation of any length since then.

But, in fairness I don’t speak to too many people. Not because I don’t want to. In fact most of the time I would love to share a (caffeinated) beverage with any number of people. But, I don’t talk too much anymore.

I’ve kind of run out of things to say.

Pop music? Sports? Movies? Actors/ Actresses? Fashion? Influencers? I’ve got nothing. All out. I have NO IDEA.

Politics? I’ve got things that most people don’t want to hear. So that’s out too because I lack the energy to debate morality. And, well, as a chronically ill woman, who has held down a career, and not stunk at it for 29 years, and the mom of a chronically ill woman, who is well on her way to a career in healthcare, I lack the patience or desire to hold my tongue on certain things.

I’ve noticed there are people in life primed for a crisis. They love to help and jump all in until something is fixed. Those are amazing people. We knew a lot of them. We sometimes ARE them. They come in full force in a difficult situation, and then they wait for the issue to resolve so they can move on. They are wired for acute situations. Chronic medical drama requires a set of wiring most people don’t have.

What happens when the crisis rolls into another? What of the tests that have more tests to follow, and scanxiety that leads to procedures and surgeries where we then wait for biopsy results? What happens when multiple body systems get involved at the same time and prevention and survival crash into each other?

Unfixable situations make people uncomfortable. They want to lob well meaning suggestions about “not worrying so much,” or “is all that really necessary?” They want to pretend it’s not happening. They avoid basic questions because the answers make them uncomfortable. They avoid learning more about our rare disease because it is pretty intense.

My 50s have brought me to a place where I have tired of making reality softer to make other people feel better.

We’re not head in the sand people. We are face it head on, be healthy and strong for as long as God fills our lungs with air and of people. And that has meant some chronic string of medical insanity.

PTEN can’t be fixed. It’s a broken gene. It permeates every cell in the body. It is with us forever, with all of its tests, and scans, and tumors, and surgeries, and all the subsequent PTSD from too many hospital stays; and too many incompetent, insensitive, and often uneducated medical professionals.

They decorate the hospitals. For the seasons. I guess it makes sense. But, it always seems kind of odd while we’re there. The decorations help mark time on the calendar and keep us aware of what’s happening in the rest of the world.

I will stand by the fact that I wish they would provide my greatest need – caffeine in a bottle for the coffee averse among us. I cannot commit to a can. If you’ve been in a recovery room, you felt that on some level. I just want a bottle that I can close back up and return to as needed while pretending I care about my Facebook feed or the random game of solitaire I play.

We tend to mark time in pre surgical selfies and waiting room photos. To each their own I guess.

On December 16th we were in a “pre-surgical” room where I recognized the photo on the wall from a stay in 2017. It was 3 penguins. I distinctly remember because it reminded me of our family. That’s a whole new level of weird. And it’s not exactly table conversation.

Every time I think we will get a breath, it gets more intense not less. and I retreat. Into a shell. In my house. Where the act of going outside and pretending I understand a culture that I have not been part of for well over 2 decades is simply too much.

I got invited to dinner yesterday. It was a sincere invitation to a celebration. I couldn’t get out of my own way. The anxiety swallowed me whole.

I promise I’m not wickedly self-absorbed. I actually am a pretty good listener. I am decent at looking involved at tables where I have nothing to contribute.

I’ve become more empathetic as I age.

I know people around me suffer challenges and crises all the time. I sometimes feel guilty taking my own time to deal with the things heavy on my heart. My Grandma was quick to remind me “it could be worse.” She wasn’t wrong.

But, just because it could be worse, doesn’t mean that something doesn’t suck. And just because it sucks doesn’t mean that you get to lie around and freak out. Or hide in your bed and whine for too long.

Because we only get one go round on this earth. And the only way out – is through.

Wishing you health in 2026. Because little matters more.

We remain…

#beatingcowdens