Zebra Seeking Spoons

Some days

living in this body

feels like wandering

a quiet field alone.

The world moves quickly—

hooves pounding forward,

plans unfolding—

while you are counting spoons

in your pocket

like fragile currency.

You learn the language of limits.

You learn the weather of pain.

You learn how quiet a room can feel

when no one understands

why standing up

can be an accomplishment.

But then—

a message arrives.

a hand reaches back.

a voice says,

I see you.

Another zebra

in the tall grass.

Suddenly the field is not empty.

Someone walks beside you

when the path turns steep.

Someone sits with you

when the spoons are gone

and the drawer is full of knives.

They do not fix the storm

inside your bones.

They do not erase the ache.

But they stay.

And that staying

is a kind of medicine.

Because survival

was never meant

to be a solo journey.

Zebras find each other.

Hoofbeats echo together.

And in the quiet spaces

between pain and exhaustion,

connection becomes

the strength

that keeps us standing. 🦓

Chronic illness

is a long road—

not a storm that passes,

but weather that lingers.

And somehow,

through the endless forecasts

of uncertainty,

you stay.

You learn the quiet details

of a life rearranged—

the heating pads,

the pill organizers,

the plans that must be cancelled

at the last minute.

You learn patience

the world rarely teaches.

You sit beside us

on the hard days

when pain steals our words,

when exhaustion folds us in half,

when the body refuses

to cooperate with the life

we once imagined.

You do not rush us.

You hold space

for the grief,

for the frustration,

for the invisible battles

fought beneath ordinary skin.

You celebrate

the smallest victories—

a short walk,

a moment of laughter,

a day when the pain

loosens its grip.

You remind us

that we are still here.

Still worthy.

Still loved.

Caregiving is not loud heroism.

It is quieter than that.

It is showing up

again and again

in ordinary moments

that require extraordinary love.

To those who carry

this steady compassion—

thank you

for standing beside us

on roads we never expected to walk.

Your kindness

makes the weight

of chronic illness

just a little lighter. 🤍

Morning begins

with the familiar accounting.

Spoons once filled the drawer—

small silver permissions

to move through the day.

Shower.

Conversation.

A short walk outside.

Breathing without thinking about it.

But chronic pain

is a quiet thief.

It takes a spoon here,

another there,

until the drawer grows light

and the day grows heavy.

I reach again

and again

for something gentle

to carry me forward.

But tonight

when I open the drawer

there are no spoons left.

Only knives.

Sharp hours.

Edges of pain.

Tasks that cut instead of carry.

Every movement

splits the day open.

Even breathing

feels like handling something

I was not meant to hold.

This is the hidden math

of chronic illness—

how the body runs out

of soft things.

How the world keeps asking

for spoons

while you are left

trying to survive

with knives.

Morning arrives

not with possibility

but with inventory.

How many spoons today?

How many small permissions

to move,

to think,

to exist in the world?

Others wake into abundance—

forkfuls of plans,

arms full of hours.

But I wake counting.

One spoon for getting up.

One spoon for answering a message.

One spoon for pretending

I am not already tired.

The math of illness

is quiet and relentless.

And loneliness grows

in the spaces between spoons.

Friends talk about tomorrow

like it’s guaranteed land.

Trips.

Dinners.

Long bright days.

I nod

from the edge of the field

where my spoons are planted

like fragile silver stems.

Here,

I move slowly among them,

careful not to drop one

into the grass.

Because when the last spoon falls

the world grows very small.

A room.

A body.

A long quiet afternoon.

Still—

in the distance

I listen for hoofbeats.

Other zebras

walking their own careful paths

through their own fields of spoons.

Some days

the world feels far away—

like I’m watching it

through thick glass.

People move through their lives

with calendars, plans,

crowded rooms

and easy bodies.

Meanwhile

I measure my days in spoons,

in symptoms,

in how much strength

I can borrow from tomorrow.

The quiet stretches.

Friends drift

not out of cruelty,

but because they cannot see

the invisible gravity

holding me in place.

Chronic illness

is a strange kind of loneliness—

being here,

but not fully able to join.

A life paused

while the rest of the world

keeps running.

But still—

inside this quiet body

my heart keeps beating.

Still curious.

Still hopeful.

Still here.

A zebra in a field

that feels empty sometimes,

listening for other hoofbeats

in the distance.

They call us zebras

because we are rare.

Because when you hear hoofbeats

it is usually a horse—

but sometimes

it is something striped

and stubborn

and still standing.

Zebra strong

is not loud strength.

It is not the kind

that lifts mountains

or runs marathons.

It is the strength

of calculating spoons

before your feet touch the floor.

The strength of choosing

what matters most

when everything costs.

It is bones that ache

and still rise.

Nerves that spark

and still reach.

A body that storms

and a spirit that says,

We go on.

Zebra strong

is learning your limits

without letting them

name you small.

It is grieving

the life you once mapped—

the blueprint crumpled

in a drawer—

and sketching something new

in careful, shaking lines.

It is asking for help.

It is accepting it.

It is forgiving your body

for surviving

the only way it knows how.

Zebra strong

is quiet defiance.

It is striped resilience—

light and dark

woven together,

not canceling each other out

but proving

both can exist

on the same living skin.

We are not fragile.

We are not failures.

We are not imaginary.

We are rare.

We are real.

We are zebra strong.

There is a version of me

I still visit.

She wakes early

without bargaining with her body.

She says yes

without calculating cost.

She moves through days

like they belong to her.

I miss her.

I miss the ease.

The unexamined strength.

The plans that stretched years ahead

without an asterisk.

Chronic illness did not arrive

with a dramatic soundtrack.

It settled in quietly—

and then stayed.

It took things

piece by piece.

Stamina.

Spontaneity.

Certainty.

It left behind

appointment cards

and a vocabulary

I never wanted to learn.

Grief became a second pulse—

steady,

sometimes louder than hope.

I grieved the career

that bent under the weight.

The friendships

that didn’t know how to stay.

The simple arrogance

of assuming tomorrow

would cooperate.

Some days

the loss feels endless—

like standing at the edge

of a house that burned down

holding only the keys.

But grief,

if you sit with it long enough,

changes temperature.

It cools.

And in the ash

there are embers.

Not the life I planned.

Not the body I had.

But something still alive.

I began to notice

what remained.

A capacity for tenderness

I never needed before.

An attention to small joys

because they are not guaranteed.

A fierce empathy

for anyone walking uneven ground.

Purpose did not return

as ambition.

It returned

as meaning.

In conversations

that say, me too.

In art shaped by lived truth.

In boundaries that protect

what little energy I have

and teach me it is enough.

I am still grieving.

I may always be.

But alongside the sorrow

there is a quiet rebuilding—

a life measured not in achievements

but in authenticity.

Not in speed

but in depth.

The woman I was

is not coming back.

But the person I am becoming

is learning how to hold loss

in one hand

and possibility

in the other.

And somehow—

both can exist

at once.

This week something really great happened. I was aty appointment getting my IVIG infusion and was recognized by several people as the person heading up the in person Ehlers-Danlos Syndrome support group in my home town, and for my blog and poetry. It was surreal but so wonderful. These are things I do with my life to find purpose and meaning ever since chronic illness and pain forced me to give up my former life plans. I always hope that I am making an Impact but it’s not always easy to tell to what degree that’s actually happening. This was a beautiful thing, to unexpectedly come face to face with multiple people who are getting something from my efforts. I hope to continue to grow the amount of people that come to the support group. It’s helpful for me to run it so I’m so glad it holds meaning to those who attend. And my blog, especially my poetry, ignites my creative side that went dormant for so long as I got sicker. The fact that people are relating to it and sharing it with others means so much to me and is so motivating. This is proof that you can create a new life that holds meaning while mourning the former life you’ve lost due to your illness. You can hold both. Don’t give up. There are so many ways to find purpose if you think outside the box and don’t let the sadness of the life you lost take over. We are all able to write a new chapter despite the complications we now live with day by day. You can find inspiration in the most unlikely places.

Wrote it in ink.

Circled it in hopeful yellow.

Set reminders.

Laid out clothes.

Told people,

“Yes. I’ll be there.”

My body did not sign the contract.

Morning arrives like a quiet cancellation.

Not dramatic.

Just heavy.

Just impossible in small, undeniable ways.

The joints vote no.

The nerves spark static.

Fatigue pulls the curtains closed

from the inside.

I rehearse apologies

before I even sit up.

There is a particular grief

in watching your own life

happen without you.

The calendar squares stay filled

while you stay still.

Friends gather.

Opportunities move on.

The world keeps excellent time.

And here I am,

renegotiating with gravity.

It isn’t flakiness.

It isn’t lack of will.

It isn’t poor planning.

It is a body

that sometimes changes the terms

without warning.

I am learning

that following through

can mean something different now.

Sometimes it means

texting instead of showing up.

Sometimes it means

showing up late.

Sometimes it means

staying home

and choosing not to break myself

for proof.

The old version of me

measured worth

in kept promises.

This version

is learning to measure worth

in honesty.

I did not fail the plan.

The plan simply did not account

for the weather inside me.

And tomorrow—

if the skies clear even a little—

I will try again.

By noon

I have already spent tomorrow.

The drawer that once held shining silver

is nearly empty—

not from laziness,

not from lack of will,

but from the quiet cost

of standing upright in a body

that negotiates every movement.

Each spoon is a decision.

Shower or breakfast.

Email or appointment.

Fold the laundry

or fold myself into the couch

and try not to resent gravity.

People think spoons are small things.

In my world

they are currency,

oxygen,

proof of possibility.

I budget carefully.

I ration hope.

I measure my day

in teaspoons.

And still—

the drawer grows bare.

When the last spoon clinks against porcelain

and there is nothing left to give,

the world does not pause.

The clock does not soften.

The pain does not bargain.

So I sit in the quiet aftermath

of effort,

learning the shape of enough.

Some days

running out of spoons

feels like failure.

Other days

it feels like survival—

like I spent them on living,

on trying,

on loving the people

who do not see the arithmetic

behind my smile.

Tomorrow

I will open the drawer again.

Maybe there will only be one.

Maybe that one

will be enough.

For whatever reason, I woke up today with the ability to focus instead of clouded in brain fog. I wish I knew the magic formula to get days like this so I could multiply them. I spent my day accessing my creative self, working on poetry and lyrics and updating the website some. I feel my strongest and most proud and happy when I can be creative but these days I rarely have the energy or I’m in too much pain. Now I’m starting to crash and I’m anxious about how bad it’s going to be, how many days worth of spoons did I use up writing today, how bad the corresponding flare up is going to be. I’m trying not to let the anxiety of tomorrow take anything away from the joyful glimmers I got today putting pen to paper. Hopefully I don’t have to wait so long until I get to do it again. I hope everyone who reads my blog or follows me on socials gets something out of my words just like I get something from writing them. It gives me a sense of purpose knowing that in various ways I’m able to help someone feel more understood, less alone, cared about. The connection of social media really makes so much of a difference when you have chronic illness and can’t reliably get out of the house or follow through with plans. I’m so grateful for all my zebras and spoonies I’ve connected with along this journey. Sending big, squishy virtual hugs.

I used to think a comeback

meant returning to who I was before—

full speed, full strength,

unbroken.

Chronic illness taught me otherwise.

It taught me that comebacks

can be small enough to fit

inside a single afternoon.

My life derailed slowly,

like a train forgetting its tracks—

appointments replacing plans,

pain replacing possibility.

For a long time

I waited for the grand rescue:

a cure, a fix,

a miraculous turning point.

Instead, hope arrived

in glimmers.

In the first morning

I woke up and didn’t feel defeated.

In the day I folded laundry

and still had energy left to live in.

In a walk to the mailbox

that felt almost ordinary.

Glimmers do not shout.

They whisper.

They say:

try again.

not all is lost.

you are still becoming.

My comeback is built from these—

from good hours

stitched carefully into hard weeks,

from gentle victories

no one else can see.

It is messy and uneven.

It is not a straight line.

It is a body learning

a new language for living.

Some days I make progress.

Some days I only survive.

Both count.

Because every glimmer—

every softer moment,

every breath without bargaining—

hands me back a small piece of myself.

And slowly, patiently,

I gather them up

like scattered tools

and begin again.

This is my comeback:

not dramatic,

not perfect,

but persistent.

Lit by tiny lights

that refuse to go out.

Most days blur together

The typical slew of symptoms and suffering

A balancing act of spoons

But every so often

a glimmer slips through.

A moment when my body

loosens its fists.

A sentence read without fog.

A laugh that surprises me

by being easy.

These glimmers are rare birds—

I never know

when they will land.

They arrive in ordinary clothing:

a warm cup held without shaking,

a song remembered word for word,

an hour that belongs to me

instead of to the ache.

I have learned

not to chase them,

not to demand they stay.

I simply notice—

here you are,

you small miracle.

They do not erase the hard days.

They do not bargain with tomorrow.

But they remind me

that I am more

than my symptoms,

more than the careful math

of spoons and limits.

Hope, in this life,

is not a grand promise.

It is a thin beam of light

finding its way

under a stubborn door.

And when it appears,

even briefly,

I let it warm my hands

and remember:

I am still here.

I thought comebacks were loud things—

confetti, finish lines, trumpets.

I didn’t know

they could be this quiet.

Sometimes a comeback

is simply getting dressed

without negotiating with your joints.

Sometimes it is a shower

that doesn’t feel like climbing a mountain,

or a morning

that doesn’t begin with bargaining.

I keep waiting for the old version of me

to walk through the door,

whole and uncracked,

holding all her spoons

like a bouquet.

But she isn’t coming.

Instead there is this new me—

patched together with heating pads

and calendars

and stubborn hope,

learning to stand up again

in smaller ways.

My comeback looks like

resting without guilt,

asking for help without shame,

laughing even when my body

has other plans.

It looks like soft victories:

a short walk,

a finished page,

a cup of tea held in steady hands.

There are days I feel erased.

There are days I feel rewritten.

Still, I rise—

not like a phoenix,

more like a determined zebra

with careful steps

and a pocketful of spoons.

My comeback is not a single moment.

It is a season.

And I am learning

that seasons return

even in bodies

that never feel like spring.

So I begin again.

Gently.

Stubbornly.

Bravely.

Over

and over

and over.

My body becomes weather

without a forecast.

What worked yesterday

does not work today.

The rules have changed

while I was sleeping.

Pain rises like a tide

inside familiar rooms—

joints, muscles, breath—

rearranging the furniture.

I measure the day in spoons,

count them twice,

drop one on the floor

and still try to keep going.

Rest is not a reward.

It is a negotiation.

A truce I sign

with shaking hands.

The world keeps asking

for my usual pace,

but my body speaks

in a slower language now.

I am not weak for listening.

I am surviving the storm

from the inside.

This is not the whole story—

just the chapter

where I stay,

breathe,

and wait for the weather

to pass.

It’s been a long time since I posted and a lot has happened. One headline being I’m officially an Auntie now! This is something that is so exciting for me. Before I got sick I taught preschool and extended day and was always around children and that’s one thing I miss terribly being disabled and unable to work in the field anymore. I can’t wait to watch my niece grow up.

We had planned on making the trip to Boston and staying overnight for the birth and I was committed to it regardless of how I felt. Unfortunately I was in a major flare for the whole trip and we also stayed longer than expected. I had so many conflicting emotions and expectations of myself and I felt so frustrated I couldn’t just be in and enjoy the experience. I had to share that time and space with my pain and illness. But I wouldn’t change a thing for the first time I saw her and held her in my arms it was all worth it.

Living with chronic illness we have to sacrifice so many important moments, lose relationships and become so isolated. It’s not fair to have to choose between being with people you love at an important time or fully listening to your body’s need for rest. I do my best to balance it but it’s exhausting. The last few weeks I’ve just been in bed and now have bed sores on top of everything else. But we are planning a day trip back up to Boston this weekend and you best believe I’ll be there

This year

I will not promise

to become unbreakable.

My body has already taught me

that survival is not loud,

and strength does not always look like climbing.

I will resolve

to listen before I push,

to rest before I disappear,

to forgive the days that arrive empty-handed.

I will measure success

in smaller, truer units:

getting dressed,

answering one message,

standing in a patch of sunlight

like it is an achievement

because today it is.

I will not chase the version of me

that existed before pain learned my name.

I will walk beside the one who is here now,

learning new maps,

rewriting what “enough” means.

Some days my resolution will be

to do less.

Some days it will be

to do nothing and not call it failure.

And if I grow,

it will be quietly—

like roots deciding, without witnesses,

that they are still reaching.

This year,

I resolve to stay.

To keep choosing my body,

even when it is difficult,

even when it is slow,

even when the world prefers miracles

over maintenance.

I am not giving up.

I am choosing a kind of hope

that can breathe here.

Some days my body feels like a zebra

standing in tall grass—

striped with contradictions,

rare but real,

misunderstood by anyone

who only knows horses.

Pain flickers along the stripes,

a Morse code I never asked to learn,

telling me today will cost more

than I planned to spend.

My spoons scatter early—

dropped in the hallway,

left on the bathroom counter,

forgotten under the weight

of simply rising from bed.

People ask why I can’t just find more,

as if I were hiding them

in some secret drawer.

But a zebra can’t turn into a horse

by wishing.

And I can’t trade this body

for one that behaves

just because I have things to do.

Still, there is a quiet resilience

in those black-and-white lines,

a rhythm of survival

that pulses beneath the ache.

I gather the spoons I have,

cradling them like fragile silver truths,

and step forward—

not gracefully,

but honestly.

Even on the hardest days,

some part of me keeps moving,

striped and stubborn,

carrying a small glint of hope

in the curve of each spoon

I manage to hold.

Some mornings it is a quiet ache,

a low cloud that never fully lifts.

Other days it is a storm

that hums beneath the skin,

vibrating through bone and breath

as if announcing itself

in every direction.

I move carefully now,

as though carrying something fragile

and strangely heavy—

a weight no one else can see

but I cannot put down.

There is a grief in this,

for the life I imagined living

without negotiation,

without needing to measure each step,

each hour,

each cost.

But there is also something like defiance—

a silver lining that isn’t bright

so much as persistent.

A small steady light

that returns

even after I’ve convinced myself

it is gone.

I am learning to build a life

inside this changing weather,

to name myself

not by what hurts

but by what continues:

the breath,

the reaching,

the rise after the fall,

the quiet choosing

to stay.

Some days the sky is a closed fist,

heavy with everything you didn’t choose.

But even then, a thin seam of light

waits at the edge—

not loud, not blazing,

just patient.

You learn to keep walking

even when the ground feels uncertain,

even when the map has blurred

and your hands are tired

from holding yourself together.

Silver linings aren’t promises

that everything will be easy.

They’re reminders—

quiet, stubborn—

that something inside you

still reaches toward light.

And maybe that’s enough for today:

not triumph,

not clarity,

just the decision

to stay,

to breathe,

to not give up

on the small brightness

that keeps returning

in its own time.

As a US Pain advocate I am working on this project. This is an important bill that we are trying to get co-introduced into the 119th Congress. It will require the CDC to research, analyze and publish population health data on chronic pain. Please reach out to your senators and federal representatives asking them to help out. They count all letters from constituents of their states and take them into consideration when working on bills like this. Every single person counts! Feel free to google and learn more about the bill in your free time if interested. It will make such a difference big difference in the treatment and outcomes for people living with chronic pain!