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Kate Bowler Profile picture
@KatecBowler
Feb 29, 2020 • 3 tweets • 2 min read • Read on X
Today, the rarest day of the year is #RareDiseaseDay

30M Americans with rare diseases--95% with no treatments.

Meet my friend @DavidFajgenbaum whose rare disease almost killed him 5 times. He is spending his life chasing his cure and working for others.
@DavidFajgenbaum He identified a drug that's extending his life & others with #Castleman disease. And he is rallying for hope by founding the Castleman Disease Collaborative Network.
@DavidFajgenbaum He is unbelievably kind and a fearless champion of the patients that others give up on. If you want to read his amazing story or support this work: amazon.com/dp/1524799610/

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More from @KatecBowler

Kate Bowler Profile picture
Mar 5, 2023
A Blessing for The Lives We Didn’t Choose

(Adapted for a communal setting from The Lives We Actually Have, page 188)
Blessed are we in the tender place between curiosity and dread,
We who wonder how to be whole,
when dreams have disappeared and part of us with them,
where mastery, control, determination, bootstrapping, and grit,
are consigned to the realm of before (where most of the world lives),
in the fever dream that promises infinite choices, unlimited progress, best life now.

Blessed are we in the after,
forced into stories we never would have written.
Read 4 tweets
Kate Bowler Profile picture
Jun 5, 2022
A blessing for when today already feels like too much
AND TOMORROW DOESN'T LOOK GOOD EITHER
I was hoping to be the kind of person by now
who doesn’t tumble, headlong, into the day
falling, falling, falling
from the high board
without nearly enough water below.

God, I swear I didn’t plan it like this.
But here I am, hoping for another miracle.
Lord, bless these dumb plans
that will short circuit my thinking
and make me fragile, brittle.

Lord, bless these multiplying tasks
that swarm like mosquitoes.

Underneath this to-do list
and these calendar invites
and these many obligations
is a set of loves.
Read 4 tweets
Kate Bowler Profile picture
May 22, 2022
A blessing for if you are in pain
(because so few people let us talk about it)
Blessed are you on this pain-filled day.
When getting out of bed deserves an award.
When you can’t remember what it feels like
not to be so aware of your own body.
When you arrange your weeks
around limitations or side effects.
Or when you stop telling the truth altogether about how badly it hurts,
how scared you are of your own mind
or the boring details of another non-diagnosis
because you’re afraid people have stopped caring.

You speak a language of suffering
the world doesn’t try to understand.
Read 6 tweets
Kate Bowler Profile picture
May 1, 2022
a blessing for when your family disappoints you
(and admitting that feels terrible)

God, the very people who are supposed to
love me and know me best have let me down.

I don’t know if I’ll be able to find a way forward.
I’m losing my sense of home
and the reality of it fills me with a kind of fear.
However big, however small,
this pain feels unforgivable.

I know they’re only human (really, I know),
but their mistakes feel like they echo through me.
They strike a painful chord that rings on and on,
and I feel convinced, all at once, that I am not loved.
Not known.
Not safe.
I feel small all over again.

So bless me, God,
when tears prick at my eyes and I feel lost to myself
Bring me home.
Read 5 tweets
Kate Bowler Profile picture
Mar 20, 2022
A prayer for when you feel invisible (and need someone to see you)

Dear God,

I always feel like the last one picked.
The left out, the unclaimed. It’s hard to miss.

My gifts are not welcome. My tears are not seen.
My pain is not registered. I feel invisible.
Jesus, when You walked among us,
You became the one rejected.
You were abandoned—even betrayed—
by Your best friends, barred from the religious institution, rejected by Your very own people.
You became one with suffering itself, and as an outcast You opened the door for us to find a home with You,
a community of outsiders.

You showed us exactly what You thought
of such exclusion and rejection.
Read 8 tweets
Kate Bowler Profile picture
Mar 6, 2022
Blessed are you, friend, sitting among the shards of what could have been. It is broken now, that dream you loved, and it has spilled out all over the ground.
Blessed are you, dear one, letting your eyes look around and remember all the hope your dream once contained. All the love. All the beauty.
Blessed are you, telling your tears they can flow. Telling your anger it can speak.
Read 6 tweets

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