My, sie’s really let hirself go…

My foot is cracked and bleeding from the cold
Yet there is beauty in the lines and cracks
My hands are gnarly, wrinkled, leathered, old
Yet every wrinkle hails unnumbered acts
They tell me to be pretty, to want more
“And more of what?” is always my reply
I’ve had a good long life, though I am poor
And poverty has been my shield and sky
I look into the mirror and I see
The greying hair, the laugh and worry lines
That come with living long and living free
For I have no consent to be confined
     They look at me and feel I’ve disengaged
     I celebrate surviving to old age






[By way of explanation:  I find myself fiercely, desperately, wanting wrinkles and grey hair and all the other signs that I have outlived every prognosis I’ve been given.  Other people fear those things, wanting to look young.  When I am old, every wrinkle and grey hair will be a badge of pride saying “I made it.” I have only recently, since diagnosis and treatment for adrenal insufficiency, begun to allow myself to dream of old age again, and what a beautiful dream it is.]


The Hardest Question

I struggled hard for air with every breath
She looked just like a grandma, or a queen
When I had ventured close enough to Death
To glimpse enough to know what I had seen
So regal, yet so humble, she became
Yet radiant as lit from the inside
So loving, yet such sternness, all the same
The things that left impressions on my mind
She did not weigh a feather by my heart
She did not feed my soul to any beast
She merely asked a question, one which starts
To show what matters most, what matters least:
     “And did you act from love and only love?”
     And after that, no question is as tough.

We Fear The Coming of Winter

My father has terminal cancer
My mother has myasthenia and neuropathy
And a list of conditions so long
It would fill a whole page

They live in the backwoods of the mountains
Where there are no home care programs
And my mother takes care of him
As well as herself

She does this because she loves him
She does this because there’s no other choice
She does this because they’ve been together
Over fifty years now and are still in love

She drives with one hand at a time, sometimes
Because the other one has given out
Then she switches hands, hoping by then
The other has the strength to tough it out

Her eyes close so tight they’re like slits
She holds them open with her hands
By pulling up on her forehead
Or putting her fingers on her eyelids

Sometimes she needs oxygen
Sometimes she’s landed in the ICU
One time she stopped breathing
And they had to call a code blue

And every morning I wake up
And I wonder if she’s still alive
Every morning I reach out with my mind
And try to see what I can find

Because sometimes she feels like a cloud
That could dissipate in the morning breeze
And sometimes she feels like a film of ice
That could crack into pieces on top of a creek

And sometimes she feels like a tiny star
Too far away to see
And I wonder if she’ll get the chance
To say goodbye to me

Does she know that we all know
The sacrifice that she is making?
Does she know that we all fear
That taking care of dad will kill her?

Does she know that sometimes she looks
Like a shadow dissipating in the noontime sun?
Does she know that sometimes she looks
Like a story ending before it’s begun?

And she’s always been stronger than strong
When I was young she worked two or three jobs
Just to give us kids more opportunities
Coming home too late to see her drive in

She’s doing the same thing now
Taking care of my dad, herself, and the house
That’s three jobs at a time, still
It’s still that sacrifice

But I am so scared she will melt with the snow
I am so scared she will crack like a frozen branch
I am scared this time she won’t have the strength
In those huge reserves she’s so often tapped

She has love and grit and determination
But can those things be enough
When you can’t even open your eyes
Without using your fingers?

The winter is coming and that’s what we all fear
The winter is coming and will she disappear?
The winter is coming and what can we do?
The winter is coming and I love you

I love you more than the frost loves the ground
I love you more than the ice loves the branch
I love you more than the snow loves to whirl
I love you more than blizzards could ever destroy

Love may not save you but love will hold you up
Love may not keep you alive forever
But it will keep something of us all alive
But, love or not, the winter scares us all

But, then, winter or not, we have love
And winter or not, we have strength
And winter or not we have a bond so close
It’s impossible to break

We all fear this coming winter
But we all love our mom
And maybe that love will be enough
Maybe something will be enough

Mom, I hope you know we love you
That every single one of us
Knows the things you do
To make Dad’s last days as good as they can

We know what you are sacrificing
We know what you are risking
We know how scared you are of the winter
We love you every day

I love you more than I could ever say
I want you to survive my father’s death
I want to be able to see you every day
I love you more than I could say

I love you
I love you more
Than I could say


Don’t ask, I can’t tell, I can’t even explain. (2012)

She skated towards me wearing a red winter scarf. My feet were frozen to the ground. She waved her scarf in the air from a distance. It was the only thing with color in sight. Then it flew through the air and landed in my hands.

I clutched the scarf tight. I didn’t see but felt her fall. I didn’t see but felt life struggle to maintain itself, and fail. I didn’t understand. I never understood. I couldn’t make sense of anything anymore.

I never let go of the scarf. I unzipped myself and wrapped it around my heart. To keep peverything warm when nothing was certain. And then I cried until I thought I would never stop.

And I’ve tried to hide what is gone. But I’m not sure if it fools anyone. There are places we used to go, things I used to do, and they seem as dead as she is. Only sometimes I feel something squeeze my heart. And things pop into focus once again, in color.

I can’t tell you all of my wishes, because they are all in code. I can’t tell you what I can’t do anymore. It’s just one more room in the building, left blank and unexplored. I wish I was known for who I was and not for what I did. I can’t tell you what I’ve lost or what I’ve gained.

I can still see more than people want for me to see. I can still feel things deeper than people expect. What I can’t understand, I still can’t understand, only more. I still want things that can’t be named. I still can’t tell you any other way than this here, right now. What stays, what shifts, what’s changed.

If you wanted something different, I can’t help it. This is what you get. If you don’t understand, maybe it’s not here for understanding. I’m just exhausted, and didn’t have the energy to tell you the normal way. So I took what I had and I went where I could. And this is what you get.

Don’t tell me what I should have said. Chances are, I couldn’t. This is brain damage we’re talking about. It isn’t convenient. It doesn’t instantly vanish. If I could only tell you a tenth of it.

It’s hard to look around and see that nearly everything I used to pay attention to, is impossible to understand. It’s hard to know I can’t say anything unless it follows a particular pattern, like this does. I couldn’t say this part without all the rest before it. All the rest. Not something else. Something acceptable.

I’m scared and I couldn’t tell you why. It’s winter and the wind is blowing hair in my face. I’m glad I have the scarf around my heart. Otherwise I’d get lost in all the snow. Everything used to be familiar. Now there’s so much snow I can’t identify anything. Or not much of anything.

Please, something be familiar. Something be unfrozen. Something be other than white. I feel tiny, and I’m shaking, and I don’t remember anything. Not what I just said, not that you’re alive. In here, I don’t know you. I don’t know me. I don’t know anything.

But it always fades back. And there’s always more. And I always find myself writing this. To you. To who? To me. To they. I don’t know. All I know is I couldn’t have written this any other way. And maybe someone can even figure out what I meant. Because it’s in there. If you look in the right places, and with the right eye for the reality of one experience or another.

I am through, so I hope, sitting up all night with neon pink insects eating my eyelashes. Lying in a sunlit room with parts of me flying into the sky and back again. Night after night trying to avoid being flattened into a grid pattern and dissolved. In lots of pain. With lots of nausea. And I hope never to visit that realm again. A lioness carried me out.

Not that anyone noticed. They come in and change your IV bag and the hours between are left for you to lie still and drift into bizarre hallucinatory worlds that always have an undercurrent of hell on earth to them. They don’t check you for it. That’d take time. So of course they’re blindsided by my paranoia and then, after that was gone, sliding into the blank white snow everywhere. They only noticed what affected them.

I’m out. But it’s not over. And I wish I could tell you the things I can’t say or understand. But they’re just lost. And I get scared if they’re ever coming back. And this was the only way to tell you. So don’t ask it to be less roundabout or full of things that didn’t literally happen. Because right now that’s one thing I can’t do, can’t do at all. Don’t call this creative writing it’s the only damn writing I have at all this moment. And what I’ve done hurts like blinding colors in my eyes instead of a scarf warming my heart. If she’s dead or asleep, I can’t tell you, don’t know, but it hurts.


How To Stay Alive

I can’t struggle
As the world fades to white
Can’t remember the way my home looked
Can’t remember my mind
Can’t remember anything
It’s all faded out
Like there’s nothing left of the world

Sleep, the white tells me
Sleep and dream of nothing
Just rest, just rest
Soft and soothing
No need to think
To remember what is wrong
Just rest


Was I drowning?
I can’t even thrash
But I almost remember
There was a surface


I struggle to surface
The ripples spread out
And out
And out

Mostly I float
But I almost remember



The white fades to a dappled green
Above me
And I remember
Now I remember

I remember trees
I remember the clover
Tangled in my hair
I remember
Oh I remember


The world is
Green, blue
Brown, yellow, gray
The white
Has faded to these things


I can move my eyes first
Then my hands
Elbows, knees, and toes
Fingers grasping
At the memory
They could never hold


I can move
I can fight
I can live


(You Will) Never Die Alone

Don’t think I don’t see
Sitting in a chair
Next to my hospital bed
A lady with long wild silver hair
And a flowing white dress you can barely see
And light brown skin so paper-thin
That the light shines straight through

Don’t think I don’t know who she is
And what she is doing here
Waiting, keeping time
In case I have need of her

Sometimes when the delirium clears
I feel myself falling into her light
The closer I get
The less strength I have
To resist her in any way

I forget who she is
I only know she is telling me
To lie down and rest
But I am already lying down

And my heart feels so heavy
As it pumps my blood
That it wants to lie down and rest

And my lungs feel so heavy
As they move the air
That they want to lie down and rest

And she tells me to lie down and rest
But I am already lying down

It’s a long night
I fall out of bed
And an alarm blares
And a nurse picks me up
And puts me back in bed
Then I fall out of bed again
It feels like a surreal dance
Of UFOs and strange beeping noises
And I don’t know where I am
Or who I am

The pain is unending though
And she tells me to lie down and rest
But I am already lying down

I feel myself floating closer and closer
And the alarm blares again
And the glowing lights of my IV pole
Dazzle my brain

And she tells me to lie down and rest
But I am already lying down

I sleep and dream delirium dreams
Of a forest on a hill full of holes
And even in the dreams
The pain is never-ending
Slowing time to a crawl
And making me wish for escape

And she tells me to lie down and rest
But I am already lying down

Next day, they force in
The biggest enema I’ve ever seen
I have more strength afterwards

And she tells me to lie down and rest
But I am already lying down

And I say no, I will not rest
Because it’s not time yet for me to meet you
I say I have friends who would miss me
Friends who are already scared
Because they can see you
And they know who you are
And I know who you are
And it’s not my time
Not yet
Not now

But I can’t fight yet
I can only vow that once I get stronger
I will fight my way back to life

My secret is I want to rest
I want to lay down
I want to give in
You are so beautiful
And so friendly
And to keep my heart beating
Is so hard sometimes
And it feels like your gravity
Wants to pull me in
And the closer I get
The more I want to rest
I’m afraid it will sound
Like I’m a coward
So for now
This is my secret

But day by day I pry my way away
From the event horizon
And day by day my strength comes back
And it gets easier to fight my way away

But Death turns to me and tells me
It will never be over
She will always be there for me

She says it like a promise
And then she makes a bigger one:

You will never die alone, my child
I will be there to catch you when you fall
Whether you die on a trail in the forest at night
Or in a room filled with family and friends
I will be there for you
I am always here with you
And you will never die alone
Because my love will fill you
With everything you need
And you will die
Filled with my love
Filled with my light
You will be who you need to be
And I will do what I have to do
For I will always be with you
And you will never die alone

[The events of a hospital admission, 8/25/2011-8/29/2011, for a bowel blockage and a very high white blood cell count.  I was delirious the whole time, but I’m convinced Death was real.]


Away (with credit to George MacDonald)

That’s the only word for where I’m going

And I can’t show you the light
And I can’t show you the love

All I can do is become like glass
And hope that through me you’ll see both

I hope through me you’ll see both love and light
I hope through me you’ll see what I see
When I look beyond death
At the back of the North Wind

Don’t be afraid
There’s nothing to fear
Only love
Only light
Only dissolving

Can you imagine what it’s like
To become the greatest love you’ve ever touched
Can you imagine what it’s like
To be everything good in the world

The North Wind told me it would be this way
The North Wind told me not to be afraid
She told me others would fear Her
But I should not
She said my time would come
Like everyone else
And She would be there waiting for me

When She waits for you
The whole room fills with light and silence
She sits by your bedside
Her light chases away
Even the thought of fear
Let alone fear itself:

You can’t be afraid in Her presence
You can’t even remember what fear was
Until She is long gone

Many a time have I woken up in a hospital
To see my whole room filled with light
And the North Wind sitting at my bedside
Patient, impassive, and loving, all at once
She has all the time in the world
And all the place to be there

She told me stories without words
She took me on journeys without moving
She gave me a red scarf to keep my heart warm
In the desperate winter of delirium
She tethered me to reality
When nothing else would

I knew who She was
You couldn’t lie in a hospital bed
With Her sitting in a chair nearby
Exuding light and truth and love
And not figure out who She was

And if you want to keep on living
You have to resist the urge
To stand up and take Her hand
And walk into the light

But when it’s time
And only when it’s time — you will know —
She will help you
And She will love you
And you will become part of Her love
And you will see the land
At the back of the North Wind

If you ask, She will take away your fear
And it will be the most beauty you have ever seen
And it will be the most love you have ever seen
And you will walk into the beauty
And you will walk into the love
And you will walk into the light
And you will become the light
And you will become the beauty
And you will become the love

And when I look for you
I need only look for Love
And that’s where I will find you


Dance partners

Love is life and joy and happiness
And love is also
Death’s permanent dance partner
Neither would be what it is
Without the other nestled inside it
The closer you get to death
The closer you get to love
And sometimes that scares people the most

What can be feared from love?
Only the total annihilation
Of all that is not love
And that’s not just anything

What can be hoped from love?
Only the total annihilation
Of all that is not love
And that could well be everything