“A Glimpse of My Hell”: A DWDC supporter shares a poem about not being able to access MAID

In this special blog post, Alberta’s Ernest Frederiksen shares an original poem about his pain and not being able to access medical assistance in dying (MAID). At 27 years old, he has twice been denied access to MAID, as his death is not reasonably foreseeable. Read on for his powerful reflections on suffering, grief, and being denied his end-of-life wishes.

Whose body is this?
Who owns my life?
My reasoned choice you dismiss,
Political battles instead twist the knife.

I am now a hollow husk,
Of who I used to be.
Contemplating my final dusk,
When I will be set free.

There is nothing but torment,
No relief in sight.
My last ounce of strength is spent,
How long must I fight?

My eyes suddenly begin to burn,
Tears well up inside.
Why is my life not mine to govern,
When for so long I have cried?

Through the haze of pain,
And the sea of anguish,
I am yet completely sane,
To end the pain is my only wish.

At times I want to scream,
To rail against the universe.
The end of this pain is but a dream,
I live my life as a curse.

In my own private hell,
I strive to remember,
How it felt to be well,
But gone is the way that things were.

I shiver and shake,
Unable to still my hands,
As they tremble and quake.
I cannot cope with what the pain demands.

How do I begin to explain,
To the unseeing world,
The true extent of my pain.
My white flag has been unfurled.

The light is getting dim,
The sun begins to sink.
Fire runs through every limb,
I am truly on the brink.

I am being torn apart,
Burned alive from within,
This existence has broken my heart,
Leaving me a prisoner inside my skin.

A simple cut will heal,
Broken bones can mend,
But nothing stops the pain I feel,
I am quickly approaching the end.

As if acid flows through every vein,
With every muscle pierced by molten steel,
And there is not one pillow without a tearstain,
Life is meant to be more than a torturous ordeal.

This sickness exacts a heavy toll,
And throughout the months and years,
This agony that wrenches at my soul,
Unleashes inner screaming that reaches no ears.

It is not possible to get through,
For the pain will always be there,
And each day the question rises anew,
What fresh hell must I now bear?

Each day dawns a fresh perspective of agony,
And every night brings yet more tears.
As I look down the road of this journey,
Continuing down this road is the worst of my fears.

The fight has left me.
My soul is tired.
To be or not to be,
An answer is required.

I die a little more every day,
A death of a subtle degrees,
I have searched in vain for another way,
Alas the pain always drives me to my knees.

I am reaching for the door,
Searching for the ending,
I cannot stand any more,
The light is swiftly fading.

I cannot fly on broken wings,
Or soar on dreams and hope,
When my broken soul no longer sings,
My shattered heart cannot cope.

The world grows steadily colder,
It is so terribly difficult to say goodbye,
As Death grows increasingly bolder,
I am ready to die.

There is no “getting better”,
There is no “other side”,
But that does not matter,
My death is left for politicians to decide.

– Ernest Frederiksen

Editor’s note: You can read Ernest’s June 2019 story about being denied MAID because he does not meet certain requirements under Canada’s assisted dying law here.