Words from the Depths of Severe ME: Honoring the life of Rosie

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Photo is of Rosie with her niece 10 years ago. 

Today we honor the life of Rosie Bayman who died from severe myalgic encephalomyelitis (ME) one year ago, today.* Rosie, from Warwickshire, England, had ME for five years before she died. Rosie wrote poetry in her head when she had to lie in darkness and in silence, too sick to sit or read. She was able to record her poetry, one line at a time, on a voice recorder. Her poetry speaks about the experience of living with severe ME.

Read her poem, “I Thought That I Was Heidi,” below and find more of her poetry on her blog, “The Person Who Disappeared.”

The ME community enjoyed the warmth, humor, insight and beauty that Rosie shared online, and through her Twitter feed.

*We understand how challenging it can be to ensure the cause of death is listed as ME on a death certificate. It is very important that the family be able to choose how (and how much) to share regarding news of their loved one’s death. If the family releases the information from the death certificate to the public, we will make it clear that ME is the official cause of death; we also acknowledge the reality that many die due to their disease without it being listed as official cause of death.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I Thought That I Was Heidi

I thought that I was Heidi,
Because I loved to ski.
When I was in the mountains,
I never felt so free.

I thought that I was Heidi.
I lived to be up high,
With frozen cheeks on wind-whippped peaks,
Under a china sky.

I thought that I was Heidi.
Down corduroy pistes I flew,
Through morning mists to slopes unkissed,
With a thrill each time like new.

I thought that I was Heidi,
But one day I fell ill.
I followed doctors orders,
But I grew sicker and sicker still.

I thought that I was Heidi,
But I became bedbound.
Lying still in darkness
I could bear not light nor sound.

I thought that I was Heidi,
But no more alps for me.
No bluebird days, no snowy haze –
No more feeling free.

I thought that I was Heidi.
I found that I was wrong.
I thought that I was Heidi –
But I was Clara, all along.

Disintegration

Everything I was before,
Everything I thought I saw,
All of that now only stands
As memory in the shadowlands.

Each fresh shock the body meets
Wipes away the latest conceits,
And institutes a foreign reign
Of disability and pain.

Another month, another day;
Another layer is peeled away.
The old life disintegrates –
A new reality awaits.

Somewhere and Nowhere

Somewhere and nowhere,
Way up in the the wild,
Standing proud beneath the sky’s great seal,
Pristine, unblemished, by no hand defiled,
The secret place lies where I go to heal.

My place of healing is a mountain pool.
Its waters are unearthly clear and pure.
They envelop me with a silken cool,
And give me succour as I seek my cure.

My healing pool is kept quite fresh and new
By a waterfall cascading at one end.
I stand beneath and let it cleanse me through,
For long quiet hours as I try to mend.

How long I’ll need my pool I cannot say;
I do not know when my disease will yield.
But I can trust that water finds a way,
And keep faith that one day I’ll be healed.

Lament of the Living Dead, or Schrodinger’s Person with ME

Trapped forever within our homes,
And then confined to bed.
We know only darkness –
We are the living dead.

The world it has forgotten us,
And life’s been unforgiving.
We can only wait in pain –
We are the dead, living.

We fear more degradation
Is all that lies ahead:
We know we must submit to it –
And continue living dead.

A grief flowers within us
At how the years have sped,
With no relief or end in sight –
Only ever living dead.

We spend our lives imagining
The lives we might have led,
If life had not abandoned us –
And left us living dead.

Wounds

As the years of illness start to blur,
The milestones that once were rare
Come and go at rapid pace,
With this in common: I am not there.

It’s not missing out that rends my heart,
Nor being passed by that makes me bleed;
It’s everything i could not give:
The burden of every unmet need.

The love at weddings I did not offer,
The babies I was not there to hold,
The dying friend I could not comfort;
These cut only deeper as I grow old.

For these moments are gone: their stories are sealed –
These are wounds that cannot be healed.

The Truth about Post Exertional Malaise

You don’t quite know how you did wrong
Or what mistake you made,
But you know one thing for sure:
The debt must now be paid.

It doesn’t matter if you repent
Or to what gods you prayed.
Your illness knows no mercy:
The debt will now be paid.

Bright fire is coursing through your veins,
Your back is being flayed.
You lie immobile knowing
The debt is being paid.

You wait for hours, days or weeks,
Hoping the pain will fade,
But you’ll keep on suffering,
Until the debt is paid.

M.E. is all powerful.
Its hand cannot be stayed;
Whenever you act, think or emote –
The debt must always be paid.

Strong

Through long hot nights and bleak endless days,
I’ve battled my illness mentally.
It’s taught me this truth about myself:
I’m just as strong as I need to be.

I’ve lived in darkness and I’ve lived in despair,
I’ve wondered what would become of me:
But through each strange and painful ordeal,
I’ve been just as strong as i needed to be.

I’ve seen my loved ones suffer great loss.
I’ve seen others face disability;
But they have endured and then they have grown –
They’ve become just as strong as they need to be.

Now I can see inside your heart.
I see your struggles and your misery;
But I also see fire and I promise you this:
You’re just as strong as you need to be.

I know you’re in pain and I know that you’re scared,
There’s no way forward that you can see.
Only take a few steps and take hold of my hand;
We’ll be just as strong as we need to be.

Queen

The illness took her and broke her;
Then it remade her.
She was forged into something new;
She became a queen.

The illness said:
Now that you are queen
I am no longer needed here.
So I am free to go,

The queen said,
And move about the world again
And be among my people?
The illness replied:
That is not the fate
Of the queens I make.

The queen said: Now I understand.
I did not before, but I do now;
Thank you for showing me.
And she cried a little.
Then she closed her eyes
And folded her hands
And let herself slip away.

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