Tag: glioblastoma

I’m going through a very, very rough patch. You might be thinking “what else is new?” I’ll tell you right now usually when I’m feeling at my lowest points I don’t post…but I stopped at the liquor store on the way home from work today and am sufficiently “wined” up to speak my mind tonight…maybe a little too much…we’ll see.

Yesterday was 16 months since Jason died…and that was the number one thing on my mind all weekend long. Why do dates have so much power? Why do they mean so much? I don’t know…but damn they do. Friday night I literally dragged myself to our friend Ian’s birthday party. Holy awkward social situation…didn’t know anyone…too many couples. I made it a couple hours and then came home and cried myself to sleep. In the past, Ian parties would be a fun time…great conversation…just the right amount of liquor…and then a really good post party situation.

Saturday morning I had a really good time hanging out with Jason’s sister…and then she left and my mood plummeted. I spent the whole day dozing on and off on the couch….trying to talk myself into going grocery shopping. I’ve been sleeping like garbage at night and every time I sit down my eyes just want to close. Sunday I had breakfast with my friend Vicki and then the boys and I spent the afternoon with my sister Elizabeth. I had a good time at both of those things…and yet I came home last night and just cried.

I’m feeling a lot like I am just not enough. Losing Jason has broken a lot of things inside of me. I don’t know how to feel happy enough for things that I should feel happy about…like the upcoming birth of my niece. Of course, I am happy for my sister…but her happiness and excitement reminds me of how happy and excited Jason and I were expecting the birth of Anna…and then the grief overwhelms me. I don’t know how to trust friendships or relationships with other people. I’m afraid to have expectations because I’ve been let down so many times.

And then when I think about it…it’s because the only person in this world who was always on my side…always rooting for me…always prioritized me in his life…worried about me…looked out for me…made sure I got home when I was tipsy…put a damn snowbrush in my car every year…took care of me when I was sick…made me coffee…bought me wine on his way home from work when I had a bad day…brought in the mail when he got home everyday…paid the bills…pulled me aside and kissed me senseless when I was in a bad mood…listened to me…let me use the chapstick he always kept in his pocket…warmed my cold hands up on his belly…called me on my shenanigans when I was overreacting about something…kept me grounded…told me he loved me every single damn day even when he couldn’t remember ANYTHING “I can’t remember if I told you today…but I love you”….I can go on and on. Even when we “fought” it was never really fighting. Most likely we would be in bed…disagreeing about something…sometimes we wouldn’t even actually resolve it before we would just get tired and start to doze…and I would slip the tips of my fingers into his back waistband and he would shift against me so we were cuddling…and I just knew that whatever we were fighting about was inconsequential and we were good.

I don’t know how to go from that…from being loved like that…and loving like that…to whatever this hell is. Did that love make me weak? Unable to stand on my own two feet and navigate life on my own? Maybe…I don’t know…but it was worth it. And if I have to keep putting up fences and burning bridges to protect myself now…I guess that’s what I’m gonna do…because I don’t have him to protect me now…and no one else is going to do it

The Universe

We revolved around each other.
Our own little universe.
And now he is gone
And
I’m 
Spinning
Out of control.

As I spin faster and faster
My screams
Are sucked into
The
Vortex
Of pain
Unheard by anyone.

I try to throw out lifelines
But this broken me
Is never enough
And
Hurt
Is guaranteed
Over and over again.

And I spin and I spin
With no tether
No gravity
Maybe
I’ll float
Away
And find my peace again. 

Never Enough

I wasn’t done with you yet
We didn’t have enough time

But what would have been enough
For your heart and mine?

Enough sunrises
Kisses
Walks in the snow

Enough rough times
Together
Through every low

Enough time with our
Brood
Sharing a proud glance

Enough nights on the town
Cherishing
Every small romance

Enough evenings at home
Cuddling
A glass of wine

Enough vacations together
Relaxing
Time to unwind

I cherish every memory
But our time was cut short

And how do I keep going
With a shattered heart?

Because somehow it must be enough
There is no going back

No bargaining with death
No editing the final act

Acceptance feels impossible
An unfathomable necessity

Time stretches on too long now
Loneliness and sadness for eternity

Saturday mornings are a struggle all their own. I got up this morning….did the “morning things”…coffee…feed dogs… I try so hard to…I don’t know…help myself “up”…find a positive outlook…acceptance… Lately several people have spoken to me about “allowing” myself to be happy…like I’m making some sort of choice in my feelings right now. I have words that are not nice to say about that…heck, I probably would say them if I wasn’t sober right now. All well-intentioned of course, but unwanted all the same. I know “Jason doesn’t want me to be sad”…I just can’t stop…turn it off…like some sort of emotional light switch. And so I turn to music and poetry. Looking for that perfect expression of my feelings…searching for understanding…

Lost

And I feel like I am lost
Wandering
Solo
Searching

Looking to the past
Wishing
Hoping
Yearning

Trying to find a place
Home
Peace
Rest

But I don’t fit this space
Grieving
Wounded
Hurting

Untethered I am drifting
Dissolving
Melting
Flaking

Struggling to find meaning
Why
Why
Why

It’s cold. Snowy. Haven’t seen the sun in…..I don’t know how long. Constant clouds for days. Before I wouldn’t have minded the excuse to just stay in. Netflix and chill…so to speak. Now I am feeling the melancholy. The chill that doesn’t want to go away. I come home from work and layer on the clothes…winter cap lives on my head. Missing Jason’s warm torso to warm up my hands…he was always willing to sacrifice his comfort for my warm fingers. Light candles around the house. And I don’t know how I’m going to get through winter. Restless in my house…but it’s worse to go out. Pour a glass of something to warm me up from the inside out and maybe dull the pain…fill up the void. Put up some Holiday decorations…lights on the deck…try to find some cheer…and then spend all evening in our bedroom…lonely. Listen to music…try to find a kindred spirit in the lyrics.

Forever and Never

Forever and never
Vows
Words whispered
Between lovers
Sharing breath
And a pillow

I will love you forever

I could never live without you

But they were not
Enough
To save you
As you took your
Last breath
Tears soak the pillow

I’m all about the poems this week.

How Are You?

How are you?
How have you been?
Haven’t seen you since
Who knows when.

I want to hide
The silence stretches
Awkward
My breath hitches

Should I gloss over the truth?
What do I say?
Do you know Jason’s gone
And I am just surviving day to day?

Should I open myself more?
Share my fragile feelings-
Without my Love
I’m floating with no ceiling

Looking down on myself
Not recognizing my life
A stranger in my body
Am I still a wife?

But you probably don’t want to hear that
Just making small talk
Waiting..staring at me for an answer
Wondering why I balk.
 
And so my mouth opens
And the syllables I hear
The pat answer I give
“I’m hanging in there”

And you turn away
In satisfaction
And my heart is racing
From your innocent question

Deep breaths
You’re fine
Get through work
Glass of wine
My mantra
Time after time
On repeat
I’m fine

Lies

Empty Words

And someday time will heal the pain
I’ll look back and understand
Why this had to happen
In the bigger plan

That’s what people tell me
When they see my grief
And empty words fall out of mouths
To give themselves relief

Jason’s death does not make sense
Yesterday, tomorrow, or today
And telling me it somehow is best
Are hurtful words you shouldn’t say

Everything happens for a reason
Is another cruel lie
Falling from well-meaning lips
After I watched my Love die

It’s hard to see my sorrow
And not know what to say
But sometimes silence and a hug
Can go a long long way

My path is mine alone
One you can’t understand
So don’t try to give advice
Just sit and hold my hand

Yesterday marked 15 months without Jason. The same amount of time he battled glioblastoma before he died. So 30 months…2 and a half years…that life has been…I don’t even have the word. A struggle? A fight? Stressful? Fucked up? Unreal? Too real? Yes to all of that.

I woke up yesterday and just didn’t want to. Mornings are always difficult…the remembering again. Reaching a hand across the bed and finding dog fur instead of my husband. Yesterday, I just laid there and cried. I just didn’t want to…any of it…anymore. And then I reminded myself of a conversation I had with Seth a few weeks ago. Seth…who struggles so hard with his Dad being gone…and I think so often feels alone in his grief. I flat out told him that it is him and his brother and sister that keep me going…because I don’t feel like doing anything most of the time. And that it is loving them and wanting them to be happy so badly…that makes me get up everyday and keep my shit together. I think they were words he needed to hear…and that I needed to tell myself yesterday

So I got up and did the day…again…managed to hide my sadness…mostly.

Today is a rainy, gloomy Saturday. I told myself I was going to be motivated to do a bunch of house cleaning today. I did clean our room…including uncovering my desk from the pile of papers on top of it so my writing area is open again. That makes me happy. Other than that…yeah…it’s 4pm and I haven’t gotten dressed…and don’t remember the last time I showered. My hair tells me maybe Thursday…but could’ve been Wednesday. I just don’t really care. I did write a poem while I was dusting…

Dust

And as I wipe the dust from your urn
I yearn for the dust inside to reform
And you to return

Like a genie from a lamp in a tale
The caress of my hand a wish
You whole and hale

But magic left my life with your end
Wishes go unanswered
Into the wind

Our hopes, dreams, love, happiness
Reduced to memory
Ash and sadness

I don’t know how to live my life for the pleasure of living anymore…for myself…not our kids. I’m lonely, but most of the time don’t want to make plans. And if I do have plans there’s always a big part of me that is hoping they will fall through and I can just stay home. Those times when I am enjoying myself….like last Saturday in Eau Claire…I know that the instant I get home my mood will crash because Jason won’t be waiting there for me…ready to listen to me talk about my day. There’s a hollowness inside and a pressure building…all at the same time. Like I just want to scream at the top of my lungs…but would anyone hear me? Would anyone care? Pretty sure it would just get the dogs all wound up.

It’s impossibly difficult to go from sharing life so completely with someone…having your happiness…sadness…hopes…dreams…future…past…so entwined with each other–to this. I don’t know what to “do”. Instead of looking forward to retirement with Jason by my side…spending our glory years together…traveling…watching our kids and our grandkids–when I look to the future now I see…nothing. Every single dream had him in it. Honestly, I think once I retire I’ll buy a small cabin by some lake somewhere and spend my days watching the water lap the shore and my nights staring into a fire and listening to it crackle.

Hemingway once said, “There is nothing to writing. All you do is sit down at a typewriter and bleed”. I guess I had a lot of “bleeding” to do today.

Everything about this weekend was “unexpected”. Anna had been not feeling well since Wednesday. She called me Friday morning and sounded so miserable I decided to go to Eau Claire and bring her home for the weekend. I think she was nervous that she would be sick for two weeks like she was when she had covid a month ago…and didn’t want to be stuck at school…and maybe just needed some Mama TLC. I needed to see her and actually assess what she had going on…and if a visit to Urgent Care was in order.

I made her homemade chicken noodle soup on Friday…yes, I can cook sometimes… and her and I worked on a puzzle together. We decided that if she wasn’t feeling better on Saturday she would go to Urgent Care. Well, she woke up Saturday morning feeling better. In fact, her and I spent all afternoon outside getting ready for winter. Jason would have been proud of us for taking advantage of the “last nice weekend”. She took care of all of my pots and I dragged in all of my garden/yard decorations. We also got the garage cleaned out…again..so that Seth and I can both park in there. It was a super productive day. Then we watched a movie and played a game in the evening.

Today she helped me go through a pile of stuff in the basement before I drove her back to school. She still has an annoying cough…but I sent some cough medicine with her that was really helping.

It made me so sad to clean up my gazebo for the year. I feel like I was finally just starting to enjoy spending time in my yard. I’ll have to transition to spending time in the basement in front of the fireplace I guess. Not the same.

Have I turned any of you into Dermot Kennedy fans yet? Love him so much. So much emotion in his voice…and his lyrics…seriously…and when he plays piano or guitar…I’m just done.

I wrote this poem right around this time last year, but I was reminded of it today as I was driving home from dropping Anna off at school.

Fall

Fall
A season of intense beauty
And death.

Your fall
One last flash of all your beautiful colors
Before darkness.

Now we clean up the remains
And prepare our hearts and homes
For winter.

Spring
Is a promise of new beauty
Someday

Without you