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Posts from the ‘Writing’ Category

Dan Immortal

Immortals
They say we are what we are,
But we don’t have to be,
I’m bad behavior but I do it in the best way,
I’ll be the watcher (watcher) of the eternal flame,
I’ll be the guard dog of all your favorite dreams,
I am the sand in the bottom half of the hourglass (glass, glass)
(Ooh)
I try to picture me without you but I can’t
‘Cause we could be immortals, immortals
Just not for long, for long,
And live with me forever now,
You pull the blackout curtains down,
Just not for long, for long,
We could be immor- immortals,
Immor- immortals,
Immor- immortals,
Immor- immortals,
Sometimes the only pay off for having any faith,
Is when it’s tested again and again everyday,
I’m still comparing your past to my future,
It might be your wound but they’re my sutures,
(Ooh)
I am the sand in the bottom half of the hourglass (glass, glass)
(Ooh)
I try to picture me without you but I can’t
‘Cause we could be immortals, immortals
Just not for long, for long,
And live with me forever now,
You pull the blackout curtains down,
Just not for long, for long,
We could be immor- immortals,
Immor- immortals,
And live with me forever now,
And pull the blackout curtains down,
We could be immortals, immortals
Just not for long, for long,
We could be immor- immortals,
Immor- immortals
Immor- immortals
Immor- immortals
(Immortals)
Source: LyricFind
Songwriters: Andy Hurley / Joe Trohman / Patrick Stump / Pete Wentz
Immortals lyrics © Walt Disney Music Company

Op-Ed on Palliative Care

Janet Landis

In March of 2018 my son died after years of hospitalizations and procedures to treat his neurodegenerative disease. Often it still feels unreal that he can be gone. I am a nurse and for 20 years, I was Dan’s nurse. Sadly, the last months of his life were very difficult and I wish that could have been different.
Serious illness impacts more than 90,000,000 people in the United States. In almost every case they could benefit from palliative care. Unfortunately, many do not receive it until late in the course of their disease. Easing suffering is at the heart of palliative care. Palliative care teams are made up of caregivers from medicine, nursing, social work, and chaplains.  Some of this is due to the idea that it is “end of life care.” Hospice care, by definition, is care provided to an individual in the final 6-12 months of their life. Palliative care can be used along with ongoing curative treatments for an illness. People who can benefit from palliative care include those with cancer, congestive heart failure, respiratory diseases, Alzheimer’s and neurodegenerative diseases including Parkinson’s Disease, and ALS. You probably know someone with a serious illness who could benefit from palliative care.
Access to palliative care, particularly in rural areas, is limited. Only 17% of rural hospitals with fifty or more beds report having palliative care programs. In an effort to increase access to palliative care and provide education for medical professionals, a bill was introduced in the House of Representatives called the Palliative Care and Hospice Education and Training Act (PCHETA), H.R. 647 on January 17, 2019. It passed unanimously on October 29, 2019, and now goes on to the Senate for consideration. The bill had nearly 300 co-sponsors and strong bi-partisan support. It aims to improve care for patients suffering from serious illnesses by creating programs that would train palliative care providers, educate patients about palliative care benefits and expand research in the field. It has received endorsements from 54 national organizations including The American Heart Association, Susan G. Komen Foundation and the Visiting Nurse Association of America. The bill will provide funding in three key areas; workforce training, education and awareness, and enhanced research. The Center to Advance Palliative Care found in a 2011 poll that virtually all respondents agreed it is important that patients with serious illness and their families be educated about palliative care. This bill would help to accomplish that.
In the last nine months of my son’s life we spent 286 days in the hospital. Even as a medical professional it was difficult to know when to ask for palliative care. By the time Dan chose it, his health had declined to the point that he needed hospice care. His goal was always to come home, no matter what was going on with managing his disease. Each successive hospitalization tested his strength physically, but even more emotionally. His homesickness caused him much more suffering than his physical illness.
I now know that all of his symptoms could have been managed at home, and we could have had valuable, precious time together in the place he valued most. H.R. 647 would have helped prevent much of my son’s pain. We need more palliative care providers, better access to palliative care and more education about what palliative care really means so that the type of suffering my son and our family went through can be prevented for other families coping with the immense challenge of caring for a loved one with a serious illness.

Dan and I during one of his last hospitalizations.

Anytime

IMG_3308Any time of day

and any day,

Memories of you fill my mind.

Tears, still so quick to spill,

rivulets of love and pain.

Busyness is it’s own addiction,

life goes on without you.

I hug your tree,

its’ branches your arms,

inhale days past,

the sweet smell of you.

We are separated,

by the realities of time,

and being.

And so, we are also,

inseparable.

You are alive,

always,

woven into and through me.

Emotion can transcend the limitations,

of this temporal space.

Love,

written somewhere in our DNA,

unites and reunites us,

until I know no more;

until I know not when;

until the mystery,

and the majesty,

of our human connection,

is revealed.

 

 

 

 

A little over a year

It’s a little over a year,

love,

I thought it would be getting easier.

It’s strange how food loses its flavor,

how everything can seem so empty,

of meaning, of purpose.

How could I ever think my writing

could sum up how we were,

Mother and son, nurse and patient,

closer than anyone can imagine.

I understand why those of us left behind

consult oracles, psychics, ouiji boards.

Anything that might give a sense of

the  presence of our loved ones again

seems acceptable,

even things completely irrational

when separated from our loss.

And your siblings, so much time lost

with them,

but no complaints, not ever,

from them, from your step-dad.

That is how much we all loved you

and love you still.

In some way we all felt it was worth it,

you were worth it,

and so much more.

All the laughter you brought us,

all the joy.

We were, we are, so blessed

to have known you, to have had you in our lives.

Sleep sweetly my baby, dear brother, dear friend.

We loved you then, we love you still,

and your love may be what heals us.

 

Nightmares

All of you and all of me were together.

We were both on gurneys

separated

something wrong with our hearts.

At least I could see you,

talk to you, even as the doctors talked over us.

Before they put us on the stretchers

I could hold you, smell you, feel you close.

my dearest, I thought it took courage

for us to walk through your life

so full of pain from procedures

and operations.

But I am a coward in the face of your loss.

And while nightmares in sleep end with waking,

the nightmare of your loss just goes on and on…….

Breaks

Tonight my coworkers asked me,

As they always do,

“When do you want to take your break?”

“I don’t usually take them.” My standard reply.

I don’t say why. That some nights the tears are too close.

That I love the memories despite the pain they cause,

Because they are of you. Because they bring you near again,

And the pain of the separation is even worse,

Than the pain of remembering.

Navigating the gap.

 

 

 

 

Pema Chödrön often mentions “the gap” in her dharma teachings. It is something that takes us out of our everyday mind and into spaciousness.  The gap can be many things, a sudden startle, a trip, a sneeze.  Anything that snaps us out of everyday mind and into a moment of openness.  Our thinking mind stops for a moment and is empty.  It is brief, usually, this kind of gap.

Change is also a gap, whether positive or negative change.  Everything is fresh when it is positive change, our hearts are lifted and all of our senses attenuated.  The world is a wonder.  We are energized, our bodies feel light and movement seems effortless. Negative change, with the associated grief, is a different experience.  Food loses its taste, scents seem absent, raising your arms and legs can feel almost impossible.  Fatigue without restorative rest becomes the norm.

We all face gaps.  They are innumerable when you start noticing them.  Learning to live comfortably with gaps is a constant practice because by their nature they challenges us.  Relaxing into not knowing can be frightening.  We like plans, we like knowing what to expect.  It is comfortable to know what lies ahead.  In reality though, we only have this moment, this breath and while we predict (with varying degrees of accuracy) what will come next, the very unpredictability of life is what adds to its richness, its complexity.

Even as I mourn the first year without my son, the return of bird songs not heard in months fills the dark morning.  Another gap, a surprise, a change.  Grief adds deep meaning to life.  Loss is a reminder of how precious each moment of our brief life is.

Years of preparation could not prepare me for the magnitude of Dan’s loss.  It often feels unendurable, this gap.  Without a map, and with only my broken heart for a compass, I must navigate this terrain so rich with beautiful memories and so empty of his physical presence.

May I find strength and grace as I stumble over briars, and look tenderly upon the delicate young blooms that are all a part of this.  May I find the courage to navigate this gap in order to help others.  May the deep, endless love for my darling Daniel, provide me with the compassion and understanding to serve others.

 

Going on

I work the shift,

I work the stove and cook,

I email, and give kudos,

And all the while I miss you.

I weep on my walks with Odie.

Such beauty, such tragedy.

Wanting to believe,

In some supernatural being,

Who oversees it all.

But it is just the Ides of March,

The confusion of new seasons,

Not experienced before.

Is forgetting therapy?

When you love those with

A plate already so full.

Every psych patient knows

To reach out.

But really, how does it figure?

In the grand scheme of things?

We all know what we should do

But does it really matter?

“Yes” our therapists would tell us,

But, the pain seems so immense.

Think of your children,

Not yourself, because they matter too.

And they did not ask the tacit question,

They were just brought into being.

Find strength from their search for meaning.

What else is there?

Beautiful Words

I am out of beautiful words.

The pain of missing you weighs heavily on me,

and I cannot sleep.

Nightmares of you, lost or in need,

tear at my mind and heart,

waking me in a cold sweat, afraid to fall asleep again.

Where are you?

Should I look toward the stars? In nature?

How can it be that I will never hold your hand again?

Everything hurts and there is no remedy.

You were, you are, a part of me.

But you are gone,

and I am still here.

Here, but no longer whole.

Dreaming Dan

 

 

 

I dreamed of you again last night.

You were a just a boy,

eyes bright with promise,

and hope.

I hugged your small body to mine,

then held you out with my hands to look at you,

to take in all that I can no longer see

in my waking life.

I told you how much I miss you,

and asked when I could see you again.

You did not answer,

You just smiled at me with that

impish grin I know so well,

and my heart swelled full

with all the love I feel for you,

and the fathomless gratitude,

for the grace that twined our lives together.

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