Understanding Doesn’t Erase It…


No matter what I understand about stress and grief and trauma, the understanding does not erase its reality.

Understanding alone does not give me freedom.

I still have to work through the muck. Albeit, it does help to understand.

Grief and trauma aren’t like injuries. They are injuries.

I never understood the physical reality of grief as an injury as well as I understand it now. I peel back the layers every day, and still there are more.

Grief is a uniquely human wound.

Even understanding the anticipatory grief packaged with John’s terminal illness did not prepare me for the eventual reality of his death. It did not prepare me for this side of the trauma. We soldiered on through the brutality of his fight for life, because John and I faced things together. No matter how gritty, our family faced everything together. And we had hope for a cure.

Now… that hope has exited stage left, as has John. And now he’s not here to stare down his son’s own cancer with us too.

Grief cripples, even when you understand. Even when you seek balance in all things. You are not “you” for awhile. Maybe you never will be.

“Faith” that I’ll see John again in spirit does not erase the physical reality I face every day. It does not erase the wounds of our trauma together. It does not remove the flood at my knees or the fight at my door.

While no one can take over my burden for me, my friends and family can cushion the pointy-ness, salve the pain, steady me when I falter and stumble. Hold my hair back as I vomit from this Life’s kick in the gut.

No one has ever thrived alone. Human history is proof of this, over and over again. The world’s sacred texts are filled with example after example. Nature also teaches us this. We can survive alone, but we do not thrive. And we don’t heal from mortal wounds without assistance, from God or otherwise.

Like any piercing physical ailment, grief and trauma require recovery and healing. Avoidance does not erase the reality of it nor the need for working through it, any more than a broken leg can be pretended away. But neither does justification or comprehension remove the reality either.

While many things are affected and even created by belief alone, some things cannot be simply unmade through knowledge and recognition. And while choices have consequences, not all “consequences” have choices.

Sometimes, the task set upon us is unfair and without cause.

Understanding alone doesn’t do the work or walk the path of Life. It merely assists in our perspective. We still must face and work with the actual reality.

Perspective and applied understanding help us transmute. And transmutation of the spirit is why we’re here. To be reborn with every conscious effort, ever seeking the Path, even when obscured by tragedy. Even when we feel alone and blind with pain.

We are not robots and we are not God. I may be a part of God, a part of the family of God, or even part of the Great Network as I understand it, but I am not the sum of Creator. And yet, even my Creator God feels. Even Jesus cried out on the cross.

Christ understood far more about the universe and spiritual reality than we can comprehend. And yet when Lazarus died, whom He was about to raise from the dead – “Jesus wept.” (John 11:35) 

Knowing everything he knew, knowing that Lazarus would return to life, knowing God and the nature of the universe and our connection, Jesus was overcome with emotion and cried for the friend he loved.

How could I be expected to perform “better” than that?

Life is in the Overcoming.

And some tasks are more difficult than others.

#ThoughtsForTheDay

—–
June 25th, 2018
5:40pm
by Julia Meek Chambers
All rights reserved.

grief-sadness-woman-widowhood

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Reaping Thorns: The Only Lifeline Is Love…


Yesterday, March 7th, marked the 2 year anniversary of rushing John to the ER. The day we first learned about glioblastoma. The day his 18 month, 8 day, 8 hour fight for life began.

Today our son walks into MD Anderson for surgery to remove the tumor inside his kidney.

We’re a whirl of emotions that should not exist all at once. But this Oprah article about failing friends in grief was appreciated.

Nothing teaches you harder about the impact of well-meant but misplaced words than the death of a spouse (or child), and worse when it is prefaced by a long, traumatic and even horrific journey to get there. A patient/caregiver/lovers’ journey that appears quieter than its reality, because you cannot talk about most of the grit. Because it’s too raw for anyone to experience. And you cannot go there without knowing you’re safe to open that door. No matter how desperately you need it.

The yearning for meaningful witness reaps thorns with it too. The callousness of the world levies its attention. And as the thorns collect, you cannot help but fear, dear God, did I ever do this to someone myself?

At least with the anticipatory grief that comes with a terminal illness, John and I could hold each other and witness each our tears.

With widowhood, any coping equipment you had for dealing with trauma is taken from you. The one person in your world who you always counted on and shared with is no longer there. Not to mention your every reality is permanently changed by no choice of your own. You not only lose your spouse, but everything you know and have is either taken or threatened too. Your time is stolen and effectiveness reduced; responsibilities change and magnify.

Unless a safety net can be successfully cast, your fall will be permanently disabling. Perhaps this is in part why the ministry to widows and orphans is so compelled in the Bible and in other religious texts. The alteration of reality can be crippling.

You will never ever see your husband again. You will never again feel their touch. They will never earn an income or owe taxes again. They will never put their things away ever again. They will never share the rest of your memories in any way. My John will never physically see his grandchildren and they will never get to meet him, even in passing. My heart will never recover its missing pieces. The bonding that marriage is, when you succeed – is excruciating when it is severed in trauma. Love is valuable, but it comes at a cost in the face of trauma. And the possibilities of never are endless.

Widowhood is torturous on multiple levels. The loss alone is more than enough. Grief will have its way with you, regardless of how much you understand. Regardless of your power of will. Like cancer, it is no respecter of persons. That carnivore will alter your capability in life, augmented by the quality of your relationship. The deeper the bond, the deeper the fractures. Yet the world steals more than just its lump of flesh. The startling negative things people will say. The vulnerability in a society that is still male dominant. The opportunists who come out of the wood work. But we don’t have the protection of neighbors and communities today like we once did in our history.

Even our friends get weird. They expect us to be normal, to react normal, to think normal, to remember like a normal remembers. They cannot see we lost an entire soul that once was inside. We simply cannot perform the way we did, until we recover. And maybe not even then. Maybe we’re different forever.

And then there’s the impact of silence, and the secondary vacuums that friends disappear into, which augments the feeling of losing every thing you value, trusted and recognize about the way you live, move and operate in the world.

In grief you are often forced to alter your perspective on relationships – that you did not expect to have to – along with your sense of trust and safety with others. Imagine suddenly having to reevaluate the safety of every relationship you’ve ever had. As death brings out the strange in people.

Some say cancer/illness/death shows you who your friends really are. Because friends wouldn’t hurt or abandon you if they cared, right? Especially when the demands upon you have multiplied beyond what a normal human being can expect.

I don’t know if that’s necessarily quite accurate, or even completely fair. That blanket seems a bit big.

Even now, in the well I’ve fallen into, I think that perspective is largely thanks to the filter of trauma we cannot help but be altered by. The tunnel vision we rely on in trauma, as all that we are often able to see is just the step we’re executing just right now. Blindingly looking for something to lean on, but faltering to find, because life knocked us silly and it’s not always easy for others to recognize.

No one is trained for this.

Not me. Not my friends.

I do not even now entirely understand what I need.

Just that I do. Need.

I know I’m far too vulnerable when a furniture salesman almost gets an earful from me, because my voice has been dumb for too long.

Neither I nor my friends will learn this without going through it together. And they cannot learn it if I am silent too.

I’m being forced into a rebirth I desperately did not want.

Every aspect of life as I’ve known it, in every way possible has been forcefully altered. It is unlike anything imaginable. Anguish that cannot be fathomed without experience. Something I could never wish on another. And yet desperately need witness for if I’m to heal.

We are all afraid of being overwhelmed, especially by what we do not understand. Trusting in God is helpful, but it doesn’t erase the way we’re designed. Without regular compassion to offset the regular negative, it’s no wonder that the loss of social support leads to “excess mortality rates” after the death of a spouse in our society.

Loss is part of the way of Life in this world. We cannot escape loss as part of our molding. Our losses are matched by our ability to Love. Our overcoming matched by the growth we already have achieved.

Well-meant but misplaced words injure. Silence injures less, but still injures. Silence robs friends of the opportunity to offset injuries caused by others. Because the callousness of the world will be on the doorstep. Not to mention judgement, gossip and malice. These too exist.

Am I what you expected after all.

How do we surmount both the precipice and the mountain falling down around us, as the tornadoes roar and floods gather at our knees?

There is only one answer. Face what you fear. The physical is transient. And the only lifeline is Love.

“Embrace the suck.” It was John’s message when he trained his men.

John’s words, his love, the Love of my Creator, and the love of my children and friends prop me as I face our son’s surgery today.

—–
March 8th, 2018
8:15am
by Julia Meek Chambers
All rights reserved.

Trapped In The Well - by AberrantCrochet

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Dark Side Of The Moon…


For me the storm is not over.

Merely changing its color.

Noise still deafens.

Wind still rages.

My head still tucked,

Bracing against the force and hanging on.

Bleeding wounds still unattended,

My furious storm shifts gears.

Black Hole devoured my Trees,

Swallowed my Sun

And gave black ice.

Dark, blinding, cold.

Vacant spot beside.

I am no longer a shield.

I am solitaire.

Written 11-30-2017, 01:30am
Copyright © 2017 by Julia Meek Chambers, all rights reserved.

Alone in the Dark Side of the Storm

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Silence Is Broken…


I finally dreamed about John 3 nights ago.

I was at an old drive in movie place, but instead of parking for cars, there was a collection of remodeled vans, cargo trucks and buses in the movie lot – tiny house style.

Where the guts of the original vehicle are removed and the inside is remodeled like an apartment.

Only these were basically just rooms to hang out in.

All the wheels had been removed from the vehicles and they just sat on the ground.

I walk up to the back of a long, converted cargo van and open the doors.

All the seats and stuff inside had been cleared out of it, save a single white bench seat/couch positioned in the middle, facing the back doors where I stood.

A custom couch made to look like it belongs in an old car, but obviously way more comfortable.

The van definitely seems bigger to me on the inside.

And there was John sitting on the couch, in his jeans, t-shirt and ball cap.

He tells me, hey baby – why don’t you come in and spend some time with me?

I look around, noting the absence of anything else inside this van.

And I quip, “Well now… I guess you did clean everything up quite a bit!”

Cocking my head, I smile coyly and start to close the door and come sit with him.

And then I freeze, staring at him – suddenly realizing, dear god I’m dreaming about him.

Nine weeks since he died and I’m finally seeing him.

But as soon as I realized he was there, the vision broke and I woke up. 😦

I tried to go back to sleep and revisit that dream, but it didn’t work.

Still, it’s remarkably comforting.

After weeks of complete vacuum, without a good or even a bad dream about John or our fight again GBM, I finally saw my love.

I just hope I see him more.

dream-van

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I don’t have to agree with you to find value in what you have to say


You know, a common (perhaps even fear based) block occurred to me this morning.

It’s a prevalent misnomer to think we have to embrace or commit to another point of view in order to gain from it or find value in it – we don’t.

Listening, learning, considering other points of view does not somehow lock us down.

It does not place chains on us. If anything, it makes us free.

The value is in the exchange, testing and even the voicing of ideas.

The keeping of ideas is not as laudable as reasoning and consideration.

We don’t have to agree in order to both be right.

And when you are fearless enough to accept that truth, the value that cracks open from that geode is breathtaking really.

We are amazing, intelligent and creative creatures.

Even when we don’t agree.

 

 

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Drive…


I don’t have a lot of answers. But I do have a few.

Life is too short a game to stick with things you hate.

Anything that takes your peace away is not healthy for you long-term.

Sure, there’s risk in change.

But all things worth anything require risk.

Life is risk. Love is risk. Hate is risk. Health is risk.

Winning is risk. Losing is risk.

Just releasing your voice upon the ether is risk.

ART IS RISK.

You can do everything right and lose every thing.

But in risking everything, you actually risk nothing.

Because you can’t opt out.

RISK is in every breath already.

It’s what makes life – LIFE.

Regardless of what you choose to do,
one of two things will happen.

You will take the next breath, or you won’t.

There’s freedom in that fact.

Might as well see what this game can look like.

And therein lies the key.

So ok, you can’t quit that job you hate today.

Or drop that class. Or move your family.

It sucks.

But you can craft a plan and set things in motion to move in a direction you want.

What does that take?

How would you get more data to look at those ideas more closely?

What doors would need to open?

How do you find those doors?

Who are the people associated with those doors and where do you meet them?

Work the problem backwards and find yourself some steps to start with.

If nothing else, life won’t be boring if you pursue this exercise in free will.

And know this.

YOU are the most powerful thing in your entire universe.

Nothing is more powerful than you. Save God, but he gives you free will.

So be your own creator.

Whether you’re an introvert or an extrovert, doesn’t matter.

Grab the handles of that motorcycle and drive that engine where you want to go.

Whatever you do – DON’T make a plan based on what you think the world wants.

Screw that.

What would you like to do? What does quality of life mean to you?

What would you like written on your gravestone?

Start with that.

But don’t wait around. Death is certain for us all.

I’m no one special, but I hope this helps.

Resolve to trust yourself a little more tomorrow than you do right now.

You won’t regret it.

“The trouble is, you think you have time.”
– Jack Kornfield, Buddha’s Little Instruction Book

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HBD…


Today is tough.

Today’s my birthday and John’s birthday is in 6 days. The weekend between our birthdays was always our standing annual date weekend. We’ve almost never thrown birthday parties for ourselves. Instead we focused on our own personal celebration. And my motto has always been to set aside October as our birthday month to do something memorable each year. It’s so easy for the monotony of work, duty and stress to just blend all your memories together into one mushy pile. But for our birthday month, I would try to do something memorable – something unique just to feed the soul – and set things apart. A deposit into that bank account of fun, positive experiences in life.

For John and I, regardless of how busy or crazy the year was, we had this standing date with each other that we looked forward to. Our October weekend birthday date. Our fun date. We tried never to break it. Of course we always tried to do something nice for our anniversary on December 23rd, but our birthday date weekend was something fun and a creation all ours I guess.

Our date this year would have fallen tonight. And then this week would have been our special week. We would have tried to at least make dinner creative most nights this week. Both John and I love to cook. Sometimes for our date, he’d make some amazing creative dish. His venison round steak with spicy Magic Bourbon Sauce was out of this world and probably my favorite of his creations. John’s skill with food often left us disappointed if we went out, so eating in was not uncommon.

His absence is punctuated right now. And it really hurts.

So I’m hanging with my two favorite people in the world.

Our kids. And soaking it in.

Love you honey. Wish you were here.

#CureGlioblastoma

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Ember…


The mountains are so pretty at sunset.

I gaze into the light.

Blinded above.

Blinded below.

Beautiful trees in my peripheral.

A warm wind swirls across my cheek and I disconnect from my body for a while.

I focus on the gift of sight.

Please God. I wanted him to see Montana.

It feels just like him. Rocky and beautiful.

Air flows around me, separating the barbs of my feathers.

I feel each loosen as I close my eyes.

Arms surround me from behind,

as a head of soft dark hair leans into my shoulder.

I loosen my soul to blend with his.

An eternal moment, destined to pass.

My skin crackles.

The fire burns so hot now.

I don’t want to go.

I don’t want you to go.

I don’t want to be reborn without you.

Please, hold my hand. Don’t leave me.

Knowing is a consuming crown.

Ashes smoke the air.

Desperately. Don’t. Want. This.

My fearless Force of Nature.

You kissed my tears and told me once that you would find me.

That nothing would stop you.

The Raptor I set free, returned but for a while.

Life without your comfort is unconscionable.

I try to calm the smolder.

Afraid to breathe on the embers of my own heart and soul.

Hold the space a little longer please.

“I’m burning up a sun, just to say goodbye.”
— The Doctor

“Before I go, I just want to tell you: you were fantastic. Absolutely fantastic. And you know what? So was I.”  — Season 1, Episode 13

“We’re all stories, in the end. Just make it a good one, eh?”

— July 31st, 2017 —
Copyright © 2017 by Julia Meek Chambers, all rights reserved.

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El Dorado…


It’s been a difficult few days.

Actually, a difficult few weeks and months.

Actually… 18 months of crisis fighting tooth and nail to be exact.
Difficult challenges around every corner.

Culminating up to a pinnacle, a colossus.

I suppose befitting the force of nature that I fiercely love. Who showers me and our children with his fierce love in return. Our love that was not simply stumbled upon in luck, but worked, created, earned and crafted between us over 22 years. #SeizeTheRide

John’s chariot came. He was stolen away this weekend, far too soon.

Neither he nor I did anything to deserve the pain and trials received through this journey, but we strove to create something better through them anyway. We chose to transmute and live consciously and as gracefully as possible. And do every damned thing we could to help others, every chance possible.

I’d like to think our lives were richer and more meaningful for it.

The love and support of others helped in every way.

To everyone who has followed and simply made a point of reaching out and holding our hands in this most terrible of storms – our utmost gratitude.

– ♡♡ –

#RaiseAwareness  #Glioblastoma #CureGBM #PrayersContinued

Here’s what I wrote for John’s FB page.  I don’t think I can write it again: https://www.facebook.com/303426583411423/photos/a.303554250065323.1073741831.303426583411423/368767613543986/?type=3&theater

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The Reveal…


Elightened TreeThe din rises and surrounds me.

Complaints and feelings and judgements and hate.

Everyone hurts, at least a little.

And so I stretch and I climb.

Petty ideas and rigid mindsets
disassemble easily in the face of extremity.

Every thing someone wants me to invest into,
I can sling shot at that.

The true test of mettle.

You’ll never know how strong something is
until you push it to the breaking point.

This is true of ideas, things, ethos and people.

The Face of Extremity will undress anything.

My can crusher of Enlightenment.

Clatter beckons at my knee; I reach for limb and pull.

The noise has always bothered me; the annoyance and distraction.

I used to be impatient with it.

But right now it simply falls away.

My ears and eyes and heartbeat only have room for Now.

Purity, truth, honor, love.

The gap that swallowed me whole.

Right Now.

Right Now.

Just Now.

One heartbeat. And two.

Who knew faith required a plastic mind?

Written 03-18-2017, 02:48am
Copyright © 2017 by Julia Meek Chambers, all rights reserved.

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There Is No Spoon…


I’ve had a recurring dream most of my life.

That there is plenty in the world until I arrive. Then something happens. But everyone around me is oblivious to my situation.

People see me a certain way and cannot see that my reality is quite different from their perception. I am assumed or judged by actions I have not taken and a reality I have not lived.

Last night I dreamt I got to attend a music performance at my daughter’s college. One of her friends was performing with a group, and the event would be followed by a banquet.

We arrived and everything was beautiful. We picked out seats, but I really needed to find a restroom. On my way back, I get completely lost. I ask for directions back to the performance hall, but no one knows what I’m talking about.

I finally find my way back, but I’ve not only missed the performance, I cannot find anyone I know. Still, I’m just in time to get a plate of food from the buffet before they tear it down. And I’m so hungry.

The buffet table is huge, taking up most of one side of the banquet room. As I go through, there’s very little left that I’m not allergic to, but I manage to find a little meat. Thankfully there’s still a little salad left on the salad bar at the end of the buffet.

I set my plate down to get the last of the salad, but as soon as I do, someone has taken my plate of food.

I’m in tears and I cry out, Not Again.

I can’t find my plate anywhere. My stomach pangs growl. And as I look back over the buffet, it’s been completely cleared.

All I have are a few leaves of spinach in a bowl. Even the water is gone.

And I feel despair.

This dream theme has recurred most of my life. And seems to play out in weird ways in my reality.

That everything somehow seems more complex for me. That normal sustenance, and needs fulfilled, is not readily available to me. That my trials are never typical. Like an alien trapped on a world I never quite click with. My timing is always off.

Everyone congratulates me on my cooking skills, yet no one is aware that I’m starving.

While it has improved some over time (i.e. my dreams rarely involve mortal danger now too), I’d like to conquer this dream. Master whatever it is that it represents. This dream had gotten better before. But it’s gotten much worse in the last 3 years since John’s glioblastoma diagnosis and death.

It’s understandable, but I need to figure out how to resolve it.

Or succumb.

scarcity-drought-spider-web-water-spout

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Anarchy In Writing…


NaBloPoMo is the blogger’s answer to NanoWriMo (National Novel Writing Month). It stands for National Blog Posting Month. I refer to it sometimes as November NaBloPoMo, because after NaBloPoMo was taken over by BlogHer, it became used there as a monthly exercise throughout the year too. Bloggers could participate in a NaBloPoMo challenge any month, with a different theme to boot. However, the main traditional November Challenge was still supported and observed. And by far, it’s remained the most active time of the year for blogging challenges.

I mentioned to you yesterday that I would try to catch you up on the unofficial nature of official November NaBloPoMo this year. I don’t know much, but here’s what I do know.

It unfortunately appears that BlogHer.com may have forgotten or simply abandoned the annual project. My guess is this is related to their acquisition by SheKnows.com in 2014. No one from either identity is responding to inquiries about NaBloPoMo, which is disappointing. And a little confusing. I can find no official announcements about it one way or another either. The last couple years of “official” November NaBloPoMo coordination since the acquisition have seemed odd. Rumors of lots of changes at BlogHer were murmured. And last year November NaBloPoMo was definitely put together at the last minute.

However, this year, the entire site, login and everything is different. You can still find archives from previous years of NaBloPoMo, but there’s nothing new. You can find posts from bloggers asking about the challenge, and no responses. No responses on Twitter either. In fact, no real interaction at all. And the entire site has been redone and restructured. I even have a brand new writer’s page at SheKnows now, along with an invitation to be a social influencer. With no details.

I’m not sure what to make of it yet, but one thing is clear – they have not invested time or attention into NaBloPoMo this year. Which makes me yearn for days of yore when we were just a bunch of creative bloggers who wanted to make writing more approachable and fun. And we did it by teaming up in November to blog our hearts out, cheer each other on, and even donate drawings prizes for those who completed the challenge.

I joined BlogHer because of NaBloPoMo. But never really participated in any of the other challenges other than the November one. Old enthusiasm for a good thing dies hard. November is where it’s at.

I’m not alone. Seeing they didn’t start the annual event in the first place, people are self-organizing for this year’s challenge. Which is to write and publish a blog post every day for the month of November (no writing ahead or banking posts more than 24 hours ahead). At least, if you follow the original rules.  To learn more about NaBloPoMo, you can refer to my previous post on it here.

So… that’s the news. No one seems to be officially organizing NaBloPoMo for 2017. And who knows what kind of legalities surround any official organization, since BlogHer took over NaBloPoMo in 2011 when it became too big for the founder to run by herself.

Personally, I find this year’s abandonment sad, because the point is to help inspire writers (especially new writers) to take a dive and write. Or blog as it were. And find their sea legs in the exercise of crushing it with a daily deadline. Not to mention to help foster community. To me, it’s one of those worthy can’t-help-but-make-the-world-better exercises.

Does anyone legally own NaBloPoMo? Um, actually yes, a paper trail exists.

However, in exercise and concept, no one can prevent bloggers from keeping the November daily blogging tradition alive. Even if the free world ended and they took our internet away, I’m sure we could find a way to keep it going. Like some sort of cult. If we wanted. We could secretly meet every November at a retreat to share each other’s scripts. Maybe create some rights and rituals to make it really rebellious. Add chips, salsa and margaritas and I’m there.

So I suppose for now, there’s a little bit of NaBloPoMo anarchy about. Though two online entities I know of are sponsoring November blogging link up parties where you can share your posts. And I have joined them both for now.

NanoPoblano November 2017The group known as Nano Poblano is one that’s been around a little while. If you want to join their ranks as a Cheer Pepper and share November posts, that’s done in their Facebook Group. While I’ve been aware of their existence for awhile, I only just joined them this year.
.

Blissfullemon NaBloPoMo Link Up PartyFor the 2017 challenge, Blissful Lemon has also offered a way to not only register your blog in one public place, but also share your November posts with fellow participants. After all, reading posts from others and supporting each other in the challenge is also part of the tradition.

Above are the respective badges for each group.

I’m glad these entities are providing a community for NaBloPoMo orphans around the world. And I did join them both this year.

But I’m feeling a little anarchist about it all. Like a sudden urge to find something to graffiti. My little tantrum over the NoMoNoBlo (No More November Blogging) that seems to have replaced such a nice community exercise.

As the world of internet blogging becomes more and more sleek, corporate and “official” and less individual and organic, I suppose it’s bound to happen.

If I had the bandwidth, I’d provide a rogue gathering spot myself. Though I’d be a poor leader for it this year with everything John and I just went through.

Still, creative rebel that I am, I couldn’t resist feeling like a message should be splattered somewhere. A little freedom of speech exercise. Mainly because no one has responded to queries. Like really, who does that? Or doesn’t do that, as it were. There’s so little interaction, it’s like the new site is run by robots.

Maybe “official” entities don’t care about NaBloPoMo anymore, or fail to see its value. Or maybe they tried to turn it into something else and failed to inform the masses who side with an annual November tradition.

But there’s a core of us out here who do care about a November Blogging Challenge and see its value. And we still love the creative individuality that was inherent in the original organic evolution of it. Maybe it’s a sign of the times and we’ll find ourselves having to move on.

But we were cool once.

NaBloPoMo #NoMoNoBlo 2017 Anarchy Badge - designed by Aberrant Crochet

And way back when, in the days of yore, many of us created and shared a variety of NaBloPoMo badges for people to pick from.

So I decided to get creative with a little rebel Aberrant protest of my own.

My expression of angst in a sea of other emotions I dine on these days.

Here’s the badge I created for this year.

#NoMoNoBlo anarchy begins.

 

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NaBloPoMo Roll Call…


It’s that time of year. If you can’t tell already, I’m participating in NaBloPoMo (National Blog Posting Month) again. Anyone else? If I’ve calculated correctly, it’ll be my 10th year. As I recall, my first NaBlo was the first year I did Maker Faire Austin in 2007.

There is some question as to whether NaBloPoMo is going to continue officially. I’ll fill you in on that story in a separate post. Regardless, in the mean time, I’m going to get on with it for my own benefit.

Writing is something I love, but also something that helps me filter through adversity. The annual challenge is one of the few difficult creative things I really enjoy. And I’ve only lost the challenge once, due to lack of internet access one Thanksgiving.

John didn’t want me skipping out on the challenge just because of him. Not last year, not this year. He’s been urging me to write my books for the last few years. And we were working on some ideas together. (He’s a writer too.)

OK, so… I’m doing NaBloPoMo this year. This time will be by far the hardest yet. This week in particular. Only 4 days in and it’s definitely a worthy challenge already, because everything’s raw and my motivation isn’t really there. John’s not here to collaborate with like usual. But… I’m going to try. A tag-a-long of the efforts John and I took together – to transmute the negative into a different experience.

Writing isn’t a bad way to work on that. I know it’ll be a worthy exercise in writing practice regardless. It always is. And if I can use some of what we’ve learned from glioblastoma to help others, well… that’s a win too and part of what John wanted. Though by far, I cannot bring myself to write about brain cancer too often. And this blog is not the place for all of that. Like last year, I’ve registered my brain cancer blog as well. But I’ve already missed some days writing for that one. So I’ll just do what I can there and focus on my writing home here for the challenge. No matter how many blogs I end up managing or writing for, this is always the home I return to. My “me” place I guess.

This week is the hardest to make NaBloPoMo work, with John’s funeral approaching, but thankfully I sketched some thoughts ahead. And one thing the last 18 months taught me to do, since digital advertising is my “day job,” is to trust the process, stay disciplined about time, write and edit quickly and get back to the grind. My goal this year is simpler – just keep going and don’t quit. Even if I do miss a day.

So, now your turn. Are you participating in the NaBloPoMo challenge?

If you are, please be sure to post your blog in the comments below so I can follow you and share support!

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Sweater of Shame…


Todd in the Sweater of Shame

Meet Todd.

He’s the baby.

Even though he’s not the youngest kitty baby in the house anymore.

He’s always had a most expressive face.

And he’s in trouble for squatting over in the corner by the window, and taking a whiz.

He hopes the kittens get the message that the window is his and he doesn’t want them near it.

He might have gotten away with it, except he did it right in front of us.

Todd is a happy pee-er. And a jealous pee-er. It’s not always a problem, but when he’s in the mood, he’ll pee on something just because he’s so happy, or because he’s so competitive.

That’s when out trots the Sweater of Shame. This isn’t the original sweater, but it’s just as effective.

For whatever reason, Todd is always thoroughly embarrassed by the Sweater.

None of my other cats ever cared enough. But the punishment is perfect for Todd.

Instead of showing off his tail, he slinks around with the sweater on as if to say, don’t look at me!

He won’t run or jump or misbehave if the sweater is on.

And he won’t pee on anything.

But he will sit and search your face for pity.

 

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The Giant Squirrel Knows…


We stopped for one of those vending machine pecan pies last Saturday night, at the giant squirrel on Hwy 71.

I’ve driven past it so many times in the night over the years, resisting the beckoning sign of digital red that calls out to late night travelers,

“NEED PIE? VENDING MACHINE WITH PIE!!! STOP NOW!!!”

So last Saturday night around 2:30am, I thought what the heck….

I’ve never seen a vending machine with pie.

To my surprise, the machine vends FULL SIZE pecan pies, not slices.

So… I got one. And had a piece with my coffee the next day.

I don’t usually care for pecan pie, as it’s usually a glob of corn syrup with a few poor choice pecans floating on top. Too sweet for me and not enough of the good stuff. But my husband and kids like it. Hence the purchase.

I have to say I’m impressed. This pie is mostly pecans!! And good ones! Just look at it!

I still have never been inside this store. Usually not open when I drive by. But the vending machine in the middle of the night is a hoot!

Next time, I’m trying the pecan brittle.

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Singularity…


A black hole opened within the sun.

Half my heart and soul fell in.

Eclipsed in the palm of the one I love.

Will I ever find him again?

..
Happy Birthday Love….

— October 27th, 2017 —
Copyright © 2017 by Julia Meek Chambers, all rights reserved.

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Filed under Glioblastoma, Poetry, Random Thoughts

Glioblastoma Updates…


May is Brain Cancer Awareness Month

Go Grey In May - graphic by Aberrant Crochet

I just want to say that I am truly grateful for everyone who checks in on John and I.

Things have not been so great lately. And I’ve been really struggling this week. Some of you drop in virtually and I appreciate the nudges. They help steady me when I feel so dizzy sometimes. And because it’s been so chaotic and emotional, I haven’t been able to wrap my head around writing very much.

John’s glioblastoma has been on the move. The first signs appeared with the New Year. And his GBM never fully disappeared in the first place. He went through a flurry of uncontrollable seizure activity and blood pressure issues in February and March. I actually think it was the uncontrollable blood pressure that was causing the seizure events. Then his liver enzymes started getting too high in February, so they were discussing pulling him from the Lomustine (CCNU) because they wanted to give his liver a break. However, MRIs in early March confirmed that the GBM had become resistant to the Lomustine. So that cinched it. It’s no longer a viable treatment.

John’s NO team decided that the best course would be to do 4 more weeks of radiation to the brain, and continue with Avastin, so that his liver could take a break and then regroup after for a new chemo. Avastin has been shown to offer protection to healthy brain tissue (but not cancer) during radiation. You can’t fight active GBM successfully without a multi-pronged attack. So it definitely seemed like the wisest route. That way his liver could recover and we could see how another chemo would do after that. It was worrisome though. Radiation combined with Temodar did not hold back John’s GBM last time. Wasn’t sure Avastin combined with radiation would this time either.

Unlike last time though, John had nausea and vomiting during this recent round of radiation treatment. He lost his strength and even started to lose feeling in his right hand, arm and foot. And he experienced more uncontrollable blood pressure and seizure events. So while he was receiving the radiation, they also changed up his blood pressure and anti-seizure medicine. And they added meds for the nausea. It took about a month, but it seemed like the new blood pressure and anti-seizure meds were a great improvement and his tremor and other seizures stabilized.

As predicted, John’s liver enzymes started to decline. While the radiation symptoms were pretty awful, it seemed like his liver was recovering as hoped. In talking to other wives of GBM patients who receive a 2nd round of radation, I learned that for most of their husbands, if they lost use of one of their hands, it came back generally within 3 months. John finished the radiation about a month ago. There has been some improvement in the feeling in his hand. It’s not back yet, but we hope this is a good sign.

A week after he completed radiation, John’s liver enzymes shot up, nearly quadrupled, for no explainable reason. He hadn’t had a dose of chemo in 2 months, and the enzymes had been coming down. But suddenly overnight the enzymes skyrocketed. They ran every test they could think of and he was negative for everything. It didn’t make any sense.

So next came CT and MRI. They found what appear to be 2 small tumors, at 1 and .7 cm in size, on his liver. And because of that, he’s been pulled off of all brain cancer treatment, waiting for a biopsy to be done and for those results to come in. Of course, everyone’s worried that the spots are cancer. There was a mention in the MRI notes that there were some unusual blood vessel formations. I hold out hope that maybe these 2 spots are more weird knots of blood vessels. And that they figure out what’s distressing his liver. Nothing about the liver distress makes sense.

The biopsy is this week. And it will take 3-5 business days to get those results back. Meaning John will not even receive Avastin before the end of next week. Avastin is not like typical chemo, as it’s an anti-angiogenic. It helps starve the GBM, reduces brain swelling better than steroids and overall improves quality of life. But he will have gone a month without any protection from GBM by then. And the swelling caused by the radiation is no small thing either.

GBM can double in size every 2-4 weeks. And John’s last ABTI/MRI showed multiple seeding areas of his left brain, possibly trying to move to his right brain.

Regardless of whether he has liver cancer too, which is so super incredibly rare in GBM cases!! the glioblastoma is faster. But there are 1% of GBM cases where it becomes gliosarcoma. Needless to say, it’s worse than regular glioblastoma.

It’s just all so crazy.

And I’m struggling. I want to be positive. But it’s scary and it hurts. Deeply through my soul, piercing lifetimes of my heart.

John had 68 different appointments with oncology teams between February – April  alone, 52 of which (plus an ER visit) in Feb/Mar. Every bit in effort to save his life, and unlock the key to GBM. It’s what it takes with this cancer. If you want to live, you don’t relax. You don’t pick the easiest path. You get your ass on the road and you go. You ask every question and figure out how to meet your doctors half-way. Because they can’t do everything. You gotta be interactive or it won’t work.

And there’s so much more than just that to do. I can’t seem to keep up. Our kids help, I barely sleep and it’s still not enough hours it seems.

And all I want to do is be with my love. Not chase papers and run errands. Capture every moment. Go out to lunch and see a movie.

But crowds and sounds cause him pain right now. He’s so tired and his headaches are getting worse. He can’t help me right now.

Dear God, I love him so much.

It’s been 14 months and I still cannot believe that this is happening to us. Or that it’s been more than 3-4 months.

There are some bright spots of hope though.

John’s recovering from the stroke. It’s taken time, but the quality of his communication (with the apraxia and aphasia) is improving. Except when he’s at his most tired. Which is a lot lately. But still, the quality of his conversation is markedly different today than it was 6 months ago.

Also, our family attended the bi-annual Together in Hope Brain Tumor Conference that MD Anderson puts on for patients and their families. It was an amazing gathering of information and people within the brain tumor community. And we met other families and survivors there. The trip was difficult for John, he really didn’t feel well. But it was so good for our family.

And, John’s NO team is trying to get Optune for him. I don’t know if insurance will cover it or not. Or if he’ll receive it fast enough. But hopefully we’ll know something about that by end of next week. Optune is promising, but I have no idea if the biopsy this week could change even that. But we met a 4.5 year survivor a the conference, who’s on Optune.

So there are things to hold onto in this upside down twist of events.

I hope and I pray that somehow, this crazy set of circumstances is a divine plan to get John the treatment he needs. And that the Optune works and allows him to live a normal life. Allows him to recover. The brain is amazing. Given enough time and proper therapy and exercise, it can recover nearly every skill it’s lost. If we can get ahead of the GBM.

I finally put together a Facebook page for John and our fight against glioblastoma. It helps to tell our story a bit better in bites than I can on my blog here. If you would like to follow along, you can find that page here.

Thanks for listening. Lots of hugs. And stay safe out there y’all.

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Filed under Friends and Family, Glioblastoma

Focus…


Don’t simply fill your life up with busy work
just to feel your wheels in motion.

Be stingy with your energy
and make every choice count.

You’ll find direction faster than
you ever realized possible.

Written 04-09-2017, 6:58pm
Copyright © 2017 by Julia Meek Chambers, all rights reserved.

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The Shelf Is Not The Place…


We get so busy surviving life,

That it’s easy to put what matters most on the shelf,

Waiting for “the right time.”

Waiting for a fresh breath of air,

Instead of the breath we have just now.

“I’ll come back to it later,” we say.

And our collection of “some day” grows.

Don’t. Wait.

There’s no better or perfect moments.

Just messy, muddy, imperfect ones.

Shelves are for decoration or storage,

Not for Living.

Thank goodness making mud pies

While taking mud baths

In red clay puddles,

With sprinklers and swings

And a yellow swimsuit, imperfectly ruined

Is one of the best memories ever.

Written 03-27-2017, 12:40am
Copyright © 2017 by Julia Meek Chambers, all rights reserved.

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Logic Isn’t Always…


My meditation today…

One of the GBM patients in one of our support groups went holiday shopping with his wife. They went to pick out a gift for their daughter. It was a triumph, because he hasn’t felt good enough to get out of the house in so long.

Unfortunately, he has aphasia and he’s lost his peripheral vision. All too common for glioblastoma warriors. He tripped on a display he couldn’t see at a store and knocked everything down. He was so embarrassed.

As people helped pick it all up, someone had the gall to tell his wife that she should make him lay off the booze before going out in public. The wife doesn’t know if he’ll go out with her again.

I’m appalled for their experience.

But the thing is, I know that before I understood this disease, I might have thought he’d been drinking too.

I wouldn’t have said anything, but it is very possible that I would have thought it. Because I simply had no clue before. I didn’t understand brain cancer at all.

*Maybe* my experience with disabled children would have helped clue me in, but if I was busy, I doubt it.

Our perspectives in life are often reasonable, based on logic and data we already possess.

But that does not automatically translate into the truth, the whole truth and nothing but truth.

Logic alone does not make us fair and just. Seemingly reasonable does not equal justification.

We are capable of interpreting what we witness and experience as falsehoods. In our justified reasonableness, we can sin against our fellow man.

We can judge and accuse others of actions and beliefs they haven’t taken and don’t have. Because “actions speak louder than words.”

This is why temperance, compassion and love are so important.

They help us to take another look.

Compassion tells us not to jump to conclusions and to offer our hand. Love tells us to hold our tongue and strive not to harm our neighbor. Temperance reminds us that just because we can, doesn’t mean it’s right.

Steven Covey reminded us to shift our paradigm. Every major religion in the world reminds us to be slow to assumption and mindful in our choices. And God reminds us that we are all his children.

Kindness and balance are everything.

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