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Rare Disease Girl · Aug 13, 2026

3x3 Thursday - On Uncertainty Versus Possibility

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Rare Disease Girl · Rare Disease Girl

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Hello my adventurous RDG Readers -

I’ve been thinking a lot about uncertainty - especially as someone who has freelanced over the past three years. It’s not been easy for me and maybe I’m not built for it.

In most cases, I don’t know what’s coming six months from now. I miss feeling like I could depend on the future. I realize now, that was a luxury.

Now I live with much more unknowns and the story I tell myself isn’t always a comfortable one.

I realize my negativity bias may help keep me safe and help me plan for challenge. But it also keeps me nervous.

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I was reminded recently how a major earthquake could strike LA at any given moment and yet I have to just make breakfast and go to work. We don’t know when it will hit and it’s apparently very overdue according to the science. I probably should buy some water jugs but otherwise… we go on with our lives, just living with the uncertainty.

And, damn it all, but I want uncertainty to stay in its lane.

I don’t want it infringing on my health or finances or the safety of those I love.

Humans, generally speaking, seem to crave a balance of stability and uncertainty. We want to feel safe, but we don’t want to be bored.

Actually, I might not mind a little boring.

For myself, the yearning toward stability has increased as the “surprises” in life have proven far TOO SURPRISING.

Only good surprises wanted. Please and thank you!

It’s scary to be a tiny human, out of control, spinning around on this tiny planet through space in a place with earthquakes. Survival and safety are intertwined, because there could be a bear behind that curve in the trail… or there might be a beautiful view.

We don’t know.

Benjamin Franklin said, “The only certainty in life is death and taxes.” Pretty bleak forecast.

But I’d like to add something - possibility. It’s like uncertainty’s sibling - but baked into it is a fundamental hope that despite uncertainty, good outcomes exist.

So I’m trying to shift from fear based uncertainty to a world rich with possibility.

Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.” Anne Lamont

How do you cope with uncertainty?

Your supportive comments help fuel this work too. Thank you all so much!

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DID YOU MISS IT?

If you’re new here and wondering, “what happened to this lady?” read:

I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols.

Thanks Teri Adams for supporting this work! I hope folks check out her wonderful Substack (link here: Teri Adams ) for a look into what the varsity squad version of disability awareness/consulting looks like!

Thank you to Katie McUpton, Dienna D’Olimpio Harada, CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.

Thank you for reading Rare Disease Girl. This post is public so feel free to share it.

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