Tag: glioblastoma

I’ve decided that the word I hate most in the whole English language is “just”. I hate it even more than “moist”….lol. Now the word “just” has a bunch of different definitions and can be used in a whole slew of different contexts. The one particular usage of it that I detest is one of it’s adverb forms. A quick Google search defines “just” in this form as “simply; only; no more than”.

In the past almost 23 months I have been told I “just” need to do this or that. And let me tell you…when someone is going through something big, emotional, life-altering, etc. the last thing they want to hear from anyone is “just” because it totally downplays the immensity of the situation. It makes it seem like there is a simple solution, when in reality there is often no solution.

Here are some examples of things that I have been told I should “just”.

• Be grateful for what I have
• Remember all the good times we had together
• Move on
• Trust God
• Get through today
• Look forward to all the great things our kids are going to do
• Be happy that Jason is in a better place
• Keep busy
• Try
• Reach out
• Live because Jason wouldn’t want me to be sad

I apologize for that little bit of a soapbox. Maybe it seems like it came out of left field, but it’s been stewing in my brain for awhile. Especially more now that we’re approaching two years that Jason has been gone. It’s a harsh world out there for people who are grieving…filled with judgement and “just”.

I haven’t posted a poem for awhile. I’m not one to necessarily get all excited about signs…but this cardinal spoke to me this morning.

Cardinal Love

Gazing out my window
Cup of coffee in my hand
On my desk a piece of paper
Blank-waiting for my plan

Words jumble in my head
I can’t get them to behave
And then a flash of red
A cardinal catches my gaze

He perches on the wire
Right outside my window pane
I feel like he can see ME
A moment impossible to explain

He visits just a moment
Before gliding to the feeder
I keep looking for his mate
But I don’t see her

Maybe she’s back in their love nest
Sleeping in this dreary morn
Perhaps she was awake all night
Protecting their brood from the storm

The cardinal flits away
In his clenched beak some seeds
A doting mate and loving father
His family he works to feed

And as he flies out of sight
My parting thought is this
I’m jealous of that lady bird
I blow her mate a kiss

Jason’s nephew got married on Saturday. It was the first family wedding I’ve attended since Jason died. I knew it would be hard, but it was important to me to be there with the family celebrating. I gave myself a pep talk beforehand that went something like “Marie…you will not lose your shit at the wedding” over and over again. And I was doing fine…chatting….visiting with family that came from North Dakota…dancing…only a little teary. And then reality hit me like a ton of bricks…and I was NOT fine.

The only good thing about losing my shit there was that I was with people that understood…let me have my moment…and then got me back out on the dance floor. Granted I was pretty much on the verge of tears the rest of the night, it was important to me that I be there. Love is always worth celebrating….even when it hurts.

To complete my unraveling…because why not?… I decided to really pull an “Alice” when I got home and went down the “rabbit hole”…pulling up pictures and videos from Jeremy and Cheryl’s wedding two years ago. Our last family pictures. Our last dance together. Hearing his voice. I miss him. And that’s not fixable or figureoutable.

Once Again

And I’m sitting in the corner
Vision blurred
Wishing you would walk in
Grab my hand
Pull me into your arms
For just
One more
Dance

And with my head on your shoulder
I love you’s in my ear
Swaying back and forth
The world
Would right itself
And start to make sense
Once
Again

The past week was a busy one. Levi had his last band concert on Monday evening I’m grateful to my friend Jen who always lets me sit next to her at band concerts. Ugh those things are hard for me to go to solo. Levi also played singles in sectionals this week. He lost in the second round on Wednesday. He’s been having some trouble with a pulled ab muscle so he’s going to heal that up and then he’ll be right back to training for next year. His Dad would be so proud of all the improvements he’s made to his game since last year at this time. Seth and Anna were busy working. I’m so proud of them and happy that they have jobs that they love, but the house just keeps getting quieter and quieter.

Last night my sister Elizabeth and her family came over. Hanging out with them is always relaxing. We had our first “real” fire of the year…wood burning vs gas burning…and enjoyed the always popular pizza pudgy pies and smores. My nephew is a very cerebral kid and it is always interesting hearing what he is up to. The things that come out of his mouth often crack me up.

This morning I had breakfast with my friend Vicki. I love it when our Sunday mornings work out so that we can meet. Then I found myself at loose ends…out of sorts and floundering with what to do for the rest of my day. I’ve been pondering “fine lines” a lot. The fine line between feeling relaxed and feeling bored. The fine line between freedom and loneliness. The fine line between keeping busy and avoidance. The fine line between feeling your feelings and stewing.

In two weeks I’m going to a wedding for Jason’s nephew. I decided to get out of the house today and go find a dress…and then I needed new earrings. And the whole time I’m out I’m turning “fine lines” over and over in my head. Does this happen to other people? Like, I’m out shopping and I’m not really all there. I’m up in my head thinking. Watching other people. Knowing that I am really only out because I’m bored and every other fucking thing I can think of to do I really only want to do with Jason.

So I come home. Make a little nest of everything that I would want on my deck…laptop, book, snack, remarkable tablet, headphones, phone, gin and tonic, ball thrower for the dog, etc and I write. Because frankly it’s the only thing that feels like anything when the rest of life feels like nothing. Fine lines…grief and depression…anxiety and worry…not wanting to live and wanting to die…so many fine lines.

And I Hate It

I wake up in the morning
Bleary-eyed
Blood stream screaming for
Its caffeine infusion

Stand silently on my deck sipping
Staring out at the yard
Birds sing good morning from the trees
Snacking on the seed and nuts I supplied

Steam rises enticingly from my mug
I keep sipping
Willing my cells to surrender to the sun
Shake off the sleep

As I listen to the song of the sparrows
The fountain babbles unceasingly
I tell myself that I am at peace;
But I hate it.

Driving home from work
Mask slips from my face
Smile fades
Slip into my garage spot

No spouse to greet me
Just dog kisses
Kids wanting supper
Pour a glass of wine

Sit in the yard
Toss the dog’s tennis ball
Douse the plants with water
As burgers sizzle on the grill

I tell myself I am relaxed
I’m strong and in control
The scene seems stress-free;
But I hate it.

Evening comes
Solitary hours
Outside feels easier than in
Start a fire

Watch the flames flicker
Swat the mosquitoes
Birds fly in for a few more seeds
Before they settle in silence

Night falls slowly
Stars blink into existence
Darkness blankets the yard
Sleepiness creeps in

I tell myself I love the fire
The dogs snuggled next to me
Serenity in the darkness;
But I hate it

Douse the flames
Close up the house
Slip between the sheets
Dogs cuddle at my side

I tell myself today was fine
The hole didn’t feel as heavy
The hurt so sharp inside
The loneliness so constant

But the lies are laid bare
By the tears in my eyes
The emptiness in my arms
My insides churn with grief;

And I hate it.

I’ve managed to string together a few “pretty good” days in a row. Anna was home this past weekend. We had coffee with my sister on Saturday morning. Then she potted all of my outside flowers…in between rain showers and having to run and get more dirt…we grossly underestimated the amount needed. On Sunday morning I had breakfast with my friend Vicki and then Anna and I headed down to Red Wing for a wedding shower. Jason’s nephew is getting married next month. My first Great Nephew was also at the shower…nothing can beat two week old baby cuddles. Yesterday, I got it in my head that I wanted to plant some elevated beds with veggies. My sister-in-law helped me with that project.

Sometimes people ask me how I write my poems. A variety of ways really. Sometimes I don’t know what I’m going to write until I sit down at my desk. Sometimes something in nature inspires me…like “Tree of Enchantment” or “Fall”. I wrote a poem for my friend Terri after I was at her house and we were talking about how we hate it when people say we “lost” our husbands…like they are a missing sock or something. Sometimes my poems come from a phrase I have been turning over in my head….”Fairy Tale” was the result of thinking about “happy endings” for days.

Often my poems are emotions that I’m trying to make sense of by putting them into words. That’s how the two poems I wrote tonight came into being. One of the things that I struggle with is being able to “appropriately” celebrate other people’s happiness and big life occasions….babies and weddings being the most difficult. Of course, babies and weddings are happy occasions and I am happy for the people that are celebrating them…I LOVE babies and weddings…but they also are very sharp reminders to me that those days are over…I will never feel that happy again. Don’t get me wrong, I still want to share in those occasions…but I will also be sobbing later.

So I sat down and thought I was going to write a poem about that emotion. I even wrote “Yesterday” at the top of the page and then this poem came out of nowhere.

Looking Down

Heaven is said to be the
Ultimate goal

When you breathe your last and
Release your soul

They say it’s a place of
Beauty and peace

Where God gathers you close and
All your pains cease

But what do you do all day
Without your family

Your daughters and sons
Do you miss me?

What are you thinking
When you look down from a cloud?

I hope you see our kids and
They make you proud

Anna leads the way
Strong and confident

Following her passions
To every continent

Seth is finding his path
Winding as it may be

Struggling with his own grief
He still takes care of me

Levi watched the way you
Loved me for years

That love he shows his girlfriend
Never causing her tears

Our brood is finding their way
I wish you were here to see it

To enjoy them next to me
Not just in spirit

It was definitely an “I’m not really sure where that came from” moment…but it worked, so there it is. I immediately finished that one, renamed it…and then wrote my “Yesterday” poem

Yesterday

Let me tell you about yesterday

Yesterday I met a guy
A tennis-playing computer nerd
Something about him caught my eye

Let me tell you about yesterday

Yesterday we kissed for the first time
We were in his brother’s dorm room
After that I called him mine

Let me tell you about yesterday

Yesterday we went “all in”
Said our “I do’s”
In front of family and friends

Let me tell you about yesterday

Yesterday we grew our family
A daughter and two sons
A perfect Fregien trilogy

Let me tell you about yesterday

Yesterday we laughed we loved
Cried and fought together too
But always rose above

Let me tell you about yesterday

Yesterday we had date night with friends
Holding hands, laughing, meeting each other’s eyes
Anticipating night’s end

Let me tell you about yesterday

Yesterday our heads shared a single pillow
Whispering our dreams
Our plans for tomorrow

Let me tell you about yesterday

Yesterday my soulmate died
The world kept on marching
Taking tomorrow in stride

But I just want to tell you about yesterday

Three years ago today Jason had his first MRI…of what would be many…and we got the call that he had a brain tumor. The very next day we met with Dr. Hunt, the neurosurgeon, and heard the word “Glioblastoma” for the first time. And that is “the day everything changed”. Coincidentally, May is also Glioblastoma Awareness Month and Mental Health Month.

Grief has five pretty well-known stages…denial, anger, bargaining, depression, acceptance….that in my experience are pretty much bullshit. While I have felt all of those…they definitely have not been in that order…and I go back and forth and around and around with them all the time. Kind of like they are all there in the background, but at any one moment I feel one…or even a couple…more strongly.

Anger is one of the hardest ones for me to handle. I know that I am angry for a lot of reasons. I’m angry at circumstances. I’m angry at God. I’m angry at my loved ones. I’m angry at our health care system. I’m angry at society. The list goes on and on. Most of the time, my anger gets tamped down because I don’t feel like it fixes anything. I draw it into myself…spend more time by myself…go “radio silent”…until I can “deal” again. Mostly, it’s when I’m sleeping that my anger comes out.

Anger

Eyes snap open
Jaw clenched tight
Teeth begging for mercy

Heart pounding
Blood throbbing in every vessel
Lungs fighting for air

Brain and body working tandem
Rescuing me 
Anger pulling me under

Red so hot and dark it blackens
Like the hottest coal in the fire
Or the pits of Hell

The coal sparks
Ignites
Strengthens in my dreams

Morphs into a ball of fire
Uncontrollable pain
All-consuming

Unable to contain it
My mouth opens
Raining flames of fire and hurt

Mindlessly burning
This world that has
Deserted me

But I live in another dimension now
Even as a dragon of pain and anger
In my unconscious

The world is protected
Doesn’t see me
Doesn’t feel my heat

The dragon lets out one more roar
Tears of molten lava run down her cheeks
The fire banks

But the ember remains