For all the octopi in my life, you are the best. :)


True friends are like octopi...

 

True friends are like octopi…

 

Save

Save

Save

1 Comment

Filed under NaBloPoMo, Random Thoughts

In my estimation, we’re evolving…


earth_sun_nasa_imageI don’t believe in organized politics anymore than I believe in organized religion.

It’s become our new way to slander and crucify our fellow-man. The excuse we give to act less than we are. Our justification for ignoring what we should be paying attention to.

I suppose it’s born out of my rebellion against anyone trying to force me to conform to a specific label.

I  refuse to join a group, vote a party line, or violate my conscience to keep someone out of office.

More times than not, reasonable people assume I think exactly as they do, and therefore against anyone they don’t like.

This is only because I am open-minded and more studied than most. I don’t gravitate to media talk shows and labels to judge a situation or person. And I find reasoned discussion, disagreement, and even debate, to be edifying and essential to society.

I believe that as we evolve as a human race, our problems and their answers likewise evolve. It is the way of spiritual maturity.

I cannot agree completely with any one ideology.

And I hope I never do.

2 Comments

Filed under NaBloPoMo, Random Thoughts

The insurance situation is frustrating for everyone…


family-insuranceThere are some things I’m thankful for now that I have experience to provide perspective.

Under current laws, my husband who was struck suddenly with a terminal brain cancer (there is no cure) cannot be denied health coverage.

I have a lot of anger over this issue, because most likely, the cause is related to his military service, but it hasn’t been proven and all responsibility is denied. And let’s face it, his area of service was not highly covered in the news. Deployment was not easy on our family. It was a destructive time for us emotionally and financially. And now, it’s happening again, only worse.

Statistics say if my husband survives another year, he will be an outlier. Extreme cancers like this are horrifying for both patients and families. There is so much you’ll never understand about something like this, without going through it. And I would never wish for you to know what any of it is like. It’s not something you wish on any human, if you are human.

And when it’s your brain under attack, it’s not like you would imagine. it’s not predictable and it is not kind about how it destroys bits and pieces of your personality and life.

Cancers like this are also orphan diseases. Less than 52,200 case of brain cancer are diagnosed per year in the US, and glioblastoma is only about 15% of those cases. Out of billions of people. I think you might have a better chance of being struck by lightning.  Unlike other diseases, there is no known cause for glioblastoma, other than a handful of connections made to certain types of radiation exposure and agent orange. Not even a genetic cause has been identified.

John has been the poster child of health, good diet and fitness for a man in his mid-40s for years. And yet he was struck with a voracious, fast killing primary brain cancer caused by a series of DNA errors. (It’s been proven to not be connected to diet. This feels very much like being struck by lightning.)

I have hated being forced to pay for things that are not useful to me.  I have resented high costs of insurance that would not cover things I wanted to do, like see a chiropractor instead of have surgery. See an acupuncturist, instead of rely on pain meds (most of which I’m allergic to anyway). Etc.I have not wanted to be forced to pay for something that in my estimation is not in my best interest.  Overall, I believe insurance should be more for catastrophic situations and less for managed care.

However, I do believe that insurance *should* cover things like what is happening to my husband. Because no one understands why some of these things happen. They can’t be foreseen. They can’t be predicted. They’re not even understood at any level. There are no known causes. It literally could be you next. It really, literally could be you. There is no telling where the dice lands next.

Insurance is supposed to help hedge the impact of extreme situations, because illness (and accidents) like this damages communities. It doesn’t just take down a person, or even a family. It takes down an entire sector of what used to be a healthy, productive circle of society.  Car accidents happen, and no one wonders if these should be covered. But being struck with an extreme disease that has no known cause or cure? And we question it?

Everyone who ever depended on John is suffering. He was not a small fish who had little impact on the world. He led and saved so many men and women. Both in duty and on his own time. As recently as New Year’s week, when we were on our 20th wedding anniversary trip, he saved a woman and her dog from an elevator during a snow storm and blackout. We didn’t know it then, but his brain tumor was forming by then. And John, as always, did the right thing. He has always protected and served and with a laid-back spirit and wry smile.

If insurance was allowed to deny him coverage because he’s been diagnosed with a terminal illness, not only does it mean his death, likely in 3 months or less, it means an incredibly torturous death. No one can reasonably agree that this would be a right thing to do.

So I must admit, these are perspectives I never had before. As we all argue over required insurance, coverage laws and costs. All the money we overpaid in our lifetime pales in comparison to the fight we’re in now. As to Obamacare policies, I have learned that many deny treatment at some point. Even Medicaid and Medicare denies treatment past a point to many GBM patients. We’re paying for Cobra so John can continue with treatment from a genuine brain cancer center, not just a generalist who knows very little about his cancer.

There are problems everywhere with no perfect solution. But I thank God for insurance coverage right now.

Save

Save

3 Comments

Filed under Editorial, Glioblastoma, NaBloPoMo

Disagreement Is Not A Weakness…


disagreementWhen we project the challenges we feel with our families – onto the world around us – we skew our perception of reality.

We lose our grounding and unfairly accuse others of actions they have not taken and beliefs they do not have.

Two people can disagree and still both be “right.”

Recognizing this is one of the levels of spiritual maturity we must all master.

1 Comment

Filed under NaBloPoMo, Random Thoughts, Writing

NOT A Fortune…


Pick A FortuneWe love fortune cookies in our family.

I know they were invented in America, blah, blah.

I don’t care. They’re so much fun!

We read them together and then collect them in a little shot glass to enjoy again later.

Anytime we need a little pick me up, positive word, a bit of fun when friends come over – just grab the shot glass and Pick A Fortune!

But the last year or so, they haven’t been so much… fortune.

In fact, much of the time, it hasn’t been fortunes inside the cookies. It’s been NOT-a-fortunes.

Don’t believe me? Check it out.

NOT A Fortune!

< Click on the picture to view it in a larger size. >

On the right side, you can see fortunes that actually qualify as “fortunes.” Or at least mostly.

  • “An opportunity will knock on your door.”
    –  General, but OK!
  • “You shouldn’t overspend at the moment.”
    – General advice, but could be a useful warning!
  • “This coming Friday will be an exciting time for you.”
    – Duh, who doesn’t love Friday? But still – I’m really looking forward to the “exciting time.” I think.

Those qualify as fortunes!

These DO NOT!

  • “If a turtle doesn’t have a shell, is it naked or homeless?”
    – Wha? Why?  NOT A FORTUNE!
  • “Love is a present that can be given every single day you live.”
    – I personally believe in Life After Death. NOT A FORTUNE!
    and my favorite…
  • “Eat your vegetable and you’ll grow up big and strong like Popeye.”
    – Seriously, wtf. THIS IS NOT A FORTUNE!!!

FORTUNE COOKIE FAIL!

Someone needs to quit at the fortune cookie factory and hire me instead.
I would write totally awesome fortunes.

My fortunes are inarguably better!

Nailed it.

Save

Save

Save

Save

Save

Save

Save

Leave a comment

Filed under Humor, NaBloPoMo

Be Your Own Fairy Godmother…


Be Your Own Fairy Godmother - image by Aberrant CrochetOne of my favorite fairy tales when I was a kid was a story called, “The Pixy and the Lazy Housewife,” by Mary Calhoun (1969).

In the story, it is told that pixies, while tricksy in nature, sometimes will help a housewife with her chores when she is sick.  Because while pixies may be tricksy, they are good-hearted folk after all.

So in the story, a lazy housewife hatches a tricksy plan of her own to get the pixies to take pity on her and clean her dirty house for her, because she doesn’t want to do it herself. Which of course backfires, as does anything when trying to trick the wee folk!

It wasn’t that I was a fan of the lazy housewife’s rotten house, or even the plight of housekeepers everywhere (where there’s always someone’s dirt to clean).

I fell in love with the idea that there might be unseen friends out there somewhere, with some kind of honor code and the power to do something, who might take pity to help on someone in pain or need.

Another favorite fairy tale of mine was Cinderella.  (The Perrault version from 1697 I might add.)  I loved that someone could find nurturing and love AND rise above their circumstances, no matter how painful a story their past.  And while fairies and wee folk in general seem to have their own interests at heart to serve, the idea of a fairy godmother was different.  Because fairy godmothers didn’t just serve their own interests. They took their charges seriously.

I don’t know about you, but I just love the idea of a fairy godmother in particular.  She’s not quite as juvenile as other wee folk.  She’s usually kind, all-knowing and willing to help.  And I just knew there had to be a fairy godmother out there for me.   Someone always there, who loved me like a mother (or grandmother), wise as the Universe, who understood my woes, would heal my wounds, treat me to enriching experiences and make magic happen.

There were other influences on my love of the idea of unseen help.  The Magician’s Nephew by C.S. Lewis mentions a grandmother who might have had fairy blood.  A wonderful notion!  And of course, there’s the character Aslan from Lewis’ books, who is practically (literally) a fairy God-Lion.

And so my love for the story of private friends and help, unseen to others, grew with each passing tale.

In adulthood, I’d even play the role of an unseen friend, cleaning house, paying bills, restocking pantries, leaving treats for friends and families. All the while, thinking of what I’d love to come home to sometime, and then doing that for someone else. After all, it’s one of the nicest gifts you could give someone. To wave a wand and grant a small wish or need.

But here’s the thing. We don’t have to wish for or wait around for our own fairy godmother. She’s already here. In fact, she’s right here inside our heart and soul.

We all hurt sometimes. We’re all tired sometimes. We all need a friend to lean on sometimes. We all need and DESERVE nurturing. We all need moments of magic sometimes.

But we should not wait for Prince Charming or our Fairy Godmother to appear and see to these needs.

Start now. Start listening to the small voice inside, who says I haven’t had fun in soooo long. And do something about it! Listen to the little kid inside who says – Ooooo! Sprinkles!  Give yourself a healthy, but tasty snack. Think of the one thing you wish most you had help with, and grant yourself a wish.

Buy yourself flowers, make time and room for a reading corner with something you love to read, treat yourself like a date and try out that recipe you’ve been eying and when you’re tired, draw a bubble bath and tuck yourself into bed. Treat yourself lovingly and bestow daily wisdom on your soul. Improve your working conditions.

Do something to increase your quality of life, love and happiness.  Grant yourself the gift of good memories.

The world would be happier if we would just listen to and take care of ourselves. Deep inside, we’re all still the same little kids, just trying to get through life.

So I challenge you thus:

1. Go surprise someone by playing the role of a Fairy Godmother and do something unexpectedly kind!

2. Find a mirror. Look yourself straight in the eyes, and say this to the beautiful young soul you see….

“I love you.  And today… I’m going to do something to prove it to you.”

And go for it!

1 Comment

Filed under Editorial, Random Thoughts, Writing

Face It…


Stained glass mandala loveSome people think that the best way to fight an enemy is to pretend that it isn’t there.

Or to somehow reimagine it as something less than it is.

I say call that demon by name and face it directly.  With the shield of God’s Love.

Save

Save

Save

Save

3 Comments

Filed under NaBloPoMo, Random Thoughts

Young Mama…


ReflectionYoung Mama,

Your role in Motherhood,

It should be sacred, it should be good.

But you’ve twisted it right nice,

Doling misery and malice.

Young Mama,

Instead of Loving

As you should.

Written 11-07-2016, 10:58am
Copyright © 2016 by Julia Meek Chambers, all rights reserved.

Save

Save

2 Comments

Filed under NaBloPoMo, Poetry, Writing

Austin Community College Is Coming Up In The World…


Austin Community College Headquarters - Wiki Commons Public Domain

Austin Community College Headquarters – Wiki Commons Public Domain

This past weekend our local community college (ACC) held a career and college exploration event for prospective and returning students.

And it was a pretty great event, I thought!

I attended with my son, who has aspirations of pursuing both robotics and music degrees in his future. And while he might be accepted into one program at UT Austin or another Texas university of his choice, the likelihood of being accepted to both programs he wants… is not so likely. Hence, taking a look at the possibility of music opportunities at the community college level. Recently I’d heard that ACC was now offering a 2 year music degree.

Back Story

A music degree was not something they offered back in my day. I took 12 hours of classes 20 years ago back when I moved from East Texas to Austin with the intention of finishing out my music BA (that I’d started 7 years prior), but switched away from when I moved to my second university that had no music program, and then pursuing my masters and later my doctorate in Music Theory.

At the time, though I’d met with department heads, I couldn’t afford to enter the UT Austin music program. So I looked to the local community college (often dubbed “Anyone Can Come” back then) for possible classes. They didn’t have a regular music degree there, but they did have a Music Business degree. Which I thought was pretty smart for any musician to consider taking. After all, if you are supposedly pursuing a career in music, why not learn a little about the business side of things. You know, just so you don’t get screwed?

It was great! classes were taught by people actually in the industry. I took piano lessons, music management courses and midi classes. Cutting edge for the time. I even started attending events with the Piano Technicians Guild.

And then, a couple months into the semester my life forever changed. I became pregnant with my oldest! AND I had all day morning sickness from hell. I spent the rest of the semester being that pregnant girl who was trying very hard not to toss her cookies in class. Who sometimes had to run out the room and find a bathroom that was not always very convenient. Somehow I still managed to pull off a 4.0.

Back To Present

Anyway, so for this “exploration event” I went with my son. After all, I was curious to see what might be offered today, since I will likely have to go back to school in the nearer, rather than farther, future.

It was truly impressive how far ACC has come.

I’ve known for some time that we are very blessed in Austin to have the resources we do through our local community college. Seriously better than many colleges around the nation. Many of the teachers are directly in the industry, or they are teaching at local universities as well as ACC. Pretty seriously sweet. And their credits transfer pretty well around the state.

What surprised me was how many more degrees and resources they have now. Truly knowledgeable programs for so many industries.

And to top it off, I couldn’t believe I was still in their system! They had all my records from 20 years ago, this semester. And they told me, if I ever want to come back and take more classes, it’s simply a matter of reconfirming my residency and I’m considered a returning student. Crazy!

For my son, they had almost anything he could want, that a 2-year degree could handle. He’s looking to add dual credit classes to his next semester, so it definitely helped give him an idea what he might pick. As it is, he only needs an elective, so anything music related, even if music technology related, should work well for him.

All in all, a valuable amount of time spent.

Save

Leave a comment

Filed under Austin

Crochet with Paracord…


As a crocheter, I’ve always been interested in experimentation and pushing the bar on what can be defined as crochet.

I’ve used crochet in traditional projects, but also non-traditional projects, from mixed media art with metal filigree, to stitching up fishing line and telephone wire, etc..

Something I’ve been interested in playing around with, but haven’t yet, is 550 gut.

550 cord – aka paracord – aka parachute cord – is a lightweight nylon kernmantle rope originally used in the suspension lines of parachutes. It’s a very handy piece of gear used by paratroopers and other military personnel around the world.

As our good engineering friend would say, it’s one of the 4 elements for solving any problem during an apocalypse: as long as you have duct tape, paracord, zip ties and a hanger – there’s nothing you can’t build. You’re set!

550 paracord with 7 strand gut - image owned by Aberrant CrochetThe “gut” I mentioned above, however, refers to the individual threads inside the sheath of the 550 cord itself. In genuine 550 cord, there should be 7 or 9 strands inside. I grabbed some of our cord and snapped a photo so you can see what I’m talking about.

And while I’m not disinterested in the idea of crocheting with full-blown 550 cord, say for a fabulous project like this crocheted paracord backpack, I find the idea of working with the silky gut inside more interesting right now. While super strong, even as individual strings, the gut is pretty soft to the touch. And I’m curious to see how it might work up and whether it would stay silky soft once I put it into stitches.

Anyway, my husband was a paratrooper for the Texas Guard, so I’m quite familiar with the stuff. We always keep it around and it’s one of the best things to keep handy in a go bag or your emergency kit in the car. I’ve tied down many the piece of furniture in the truck with simple 550 cord.

Magic-awesome stuff.  The problem is, usually it comes in much shorter lengths than I’d want for a crochet project.

If I’m going to work with it, I want at least 100 yards of unbroken, uncut 550 gut. While I can certainly skin my own paracord for the gut, I still need it in one giant length of *yardage,* not just a few feet. I do NOT want to work with a bunch of short, cut pieces. And I don’t want the junk they sell for crafts either. I want the real thing. And it’s not usually found in such long lengths.

Military-grade 550 cord, refers to the minimum weight of the cord’s rated breaking strength, measured in pounds – Mil-C-5040h Type III paracord. 550 paracord is for life-dependent uses. Hence paracord bracelets and other useful applications for easily carrying around an emergency piece of heavy-duty cord. Just in case you find yourself in need. There are only a few companies who make it for true military specs.  And it’s not the craft store version.

Anyway, a friend recently listened to my idea of working with paracord gut and suggested I consider nano cord, specifically nano cord from a Atwood rope company. Turns out I can get it in a 100 yard spool on Amazon Prime. It’s not 550 gut, as it’s still sheath around I think 3 strands, but it is tested to 36 pounds. While I haven’t proven to myself that nano cord is mil-spec at all, it does seem interesting. So I think I’m going to snag a roll to play around with and see what I can do.  AND I kinda want to see for myself if the gut is anything like real 550 gut.

So we’ll see. I’ll let you know when I get anything of interest going with that. 😉

Curious to learn more about 550 cord and all the useful wonders it bestows? I found you a pretty good resource (why recreate something that’s already good?).  Check this well-written survival article out here.

Save

Save

Save

2 Comments

Filed under crochet, Mixed Media and Oddities

Crochet Skills ≈ Heart Surgery ≈ Life


How Crochet Literally Has Saved Lives

(aka Brilliant People Crochet)

Did you notice the recent news story about the heart surgeon who credits CROCHET and a SEWING CLASS for his surgery skills?

“Dr. W. Dudley Johnson… pioneered and popularized lifesaving cardiac bypass surgery and was considered a healer of last resort for heart patients around the world…. He applied the crocheting skills he had learned from his mother, who was a home economics teacher, and the needlecraft he was taught in a seventh-grade sewing class (he got an A), to perform more than 8,500 heart bypass operations over four decades.” – NY Times, October 30th, 2016.

Unfortunately Dr. Johnson died last week, but his inspiration and legacy live on. Thanks to his mom, and #crochet.

Told ya we can rule the world…

(Check out the full story about this amazing man’s life here: http://www.nytimes.com/2016/10/31/health/dudley-johnson-dead-coronary-bypass.html.)

thread-crochet-hook - tools of a heart surgeon

Save

Save

Save

Save

2 Comments

Filed under Crochet News, NaBloPoMo

A Little Step Back In Time…


wp-image-1764553720jpg.jpgI finally stopped into a sweet little vintage store on Guadalupe, in downtown Austin called simply
– I Vintage –
right across the street from The Buffalo Exchange.

2016-11-03_13-34-11_0.0ev-1-1.jpg.jpgAnd as soon as I walked in, I found this sweet little handkerchief!

It’s a very nice example of “rick rack crochet.” In this case, the “rick rack” used was only about 1/8″ wide. This is a horseshoe style of trim.

wp-image-579822390jpg.jpgThe embroidery on the front is in Spanish and reads, “Ay amor me duele tonto.” Which http://www.spanishdict.com tells me means “Oh love it hurts me so.”

You can see two halves of a broken heart also in the embroidery.

An odd little sentiment to stitch into a lovely kerchief, it seems to me. But then, if the kerchief is for crying, then I suppose it makes sense!

You can see other examples of rick rack style crochet from the late 1800’s, early 1900’s and late 1900’s in my Pinterest collection here.

Learn more about the history of “rick rack crochet” here and here!

Save

Save

Save

Save

Save

Save

Save

2 Comments

Filed under Austin, crochet

An Update For The Friends…


Just wanted to share some positive news with my crochet friends who have followed along from afar.  We had positive news from John’s scans a couple of weeks ago.

After nearly 9 months, John’s glioblastoma is finally stabilizing.  His last scans look a bit better than the scans from 6 weeks prior, but mostly similar. Of course, it’s still way better than the shocking scans from July.

The doctors also describe this improvement as “his glioblastoma is ‘stable.'” Meaning glioblastoma is the kind of cancer that’s never actually gone even when you can’t see contrast, but it’s not growing or moving at this time.

Swelling is a little less too. And the scar tissue from his stroke is starting to be reabsorbed, which they say is also good. Cancer’s still there, and still interfering with the visual pathway for his eyesight on the right side, but it’s a bit smaller and not growing right now. So that’s good. All in all, less contrast is good news!

Not only is the current Avastin/Lomustine combo treatment working for John (it doesn’t for most patients) he’s also tolerating it well. So we’re grateful.

Next steps include chasing down specialized speech therapy and some specialized reading/vision help and glasses. John’s vision loss has so far interfered with his ability to get very far with communication therapy, and sometimes it’s potentially hazardous. So this is an important piece of his recovery for us to address.

We may have to pay out-of-pocket for vision therapy and gear, but trying to see if we can get at least some help from our insurance. With all the unforseen expenses on this journey, I’m trying to maximize whatever we can before the end of the year changes anything.

John’s next scans/evals are scheduled for December.

Last but not least — John turned 48 on October 27th — a date he didn’t initially think he’d get to see.

We are all so incredibly grateful. For the precious time together. For the beautiful friends who have helped with prayers and financial support so we can pay for treatment and gasoline and all the expenses that come with cancer treatment. And for all the words of encouragement that prop us up every single day in this storm.

The battle is not over, much less the war.  But at least the constant shelling has paused, so we can regain our balance and breathe a little more.

xxxooo

Save

Save

4 Comments

Filed under Glioblastoma, NaBloPoMo

It Begins…


NaBloPoMo November 2016It’s NaBloPoMo time of year again. In spite of the chaos and emotional pain this year has been for me, I’ve committed to doing it. In part because writing is part of my therapy in life anyway.

Creating crochet, writing or music. One of those 3 things has always been present to help me get through, sort through, be through.

In childhood, it was my piano that expressed my soul the most. In early motherhood it was crochet that took the brunt.

As an adult, I haven’t had a lot of time to sit and craft at the piano. It requires a living room monopoly to do it and that’s not always possible.

These days it’s writing and crochet the most. And I so desperately need to find voice in any way I can.

Another reason for me not to give up the challenge though is because of the 8-9 years I’ve participated.

The idea that I’m not giving up all parts of me in this journey as a care partner (better label than care giver I think).

And in all these years of taking on this writers challenge, the only time I lost was one year thanks to Thanksgiving Day and no internet access to post for the day. (I have a smart phone now!)

NaBloPoMo was started 10 years ago. So, it’s kind become a part of my soul, being a part of it for so long.

I did take it a step further this year though. I decided to register and commit to posting every day in November for TWO blogs. My usual Aberrant Crochet blog. But also a new blog I’m formulating about glioblastoma.

I registered Frell Cancer nearly 9 months ago and haven’t written a single post yet. Its purpose is to help others who are desperately trying to get up to speed on what glioblastoma (GBM) is, treatments, studies, reality, etc.. Helping others in the GBM community was the point, because there’s so little support for people in that boat around the world. And most people don’t understand how it’s a different kind of cancer than everything else.

Victims always find themselves grappling with trying to educate their families while enduring the shelling that the glioblastoma fight often is. Such a fast, voracious cancer that threatens to destroy your very personality, identity, your relationships, etc.. Everything about you can change into someone you don’t recognize – overnight.

It’s so hard, and there’s a lot of fear. For good reason.

So…. NaBloPoMo will serve as the fire to propel me forward into assembling those posts for that blog. Besides, while I write whatever I want on Aberrant Crochet, I don’t want it to become all cancer all the time. And frankly, there’s a lot of pain in what we deal with in the GBM world. The posts I need to write will not be the most enjoyable kind.

The daily reality of glioblastoma is like living in a fire. It’s not something you really want to experience, unless you need to help someone. Unless you need to understand what families like ours face. These kinds of posts are the kind aimed at helping those who need it, in spite of how sad or shocking it may seem to others. The most efficient way to help those I seek to help most is simply to isolate those posts in one place that makes sense. So, I set aside a place for it. We’ll see how it goes.

Though to be clear, don’t think I’m never going to write about cancer here. I will. It’s more than just a slice of my reality now. And I have information I’m putting together that will help other cancers too. So there will be some cross posting.

You don’t have to be a seasoned NaBloPoMo challenger to know that unless you have nothing else to do, registering two blogs is stupid crazy. Especially if you’re like me and want every single post to count as a real exchange, or a real article. Not a throw-away post to say I posted, but ultimately, it’s crap.

But I think I have plenty I can share. More than anything, time management and structure will be the issue, not words I think.

So… here goes. Today’s the 1st day.

Wish me luck!

Save

Save

Save

Leave a comment

Filed under Glioblastoma, NaBloPoMo

It’s Coming…


Dude.

NaBloPoMo is coming.

Yes, I registered my blog. I even registered 2 blogs.

After all, the new glioblastoma blog I’m putting together could benefit from daily writing.

I’m totally insane. But I gotta.

I’ve lost only once in 8 years.

Ain’t gonna be this year.

Therapy, here I come.

Join me.

 

2 Comments

Filed under NaBloPoMo

Witness…


John and I talk things out openly all the time.

I have no idea what it is like personally to have two brain surgeries, seizures and strokes and not be able to communicate normally and do what the rest of us take for granted.

I have no idea what it is like to be a husband/father/soldier/bread-winner and not know if I will live a few more months or not.

But living this reality with him, I can achieve a close guess.

Likewise, he has no idea what it is like for me to be his caregiver/advocate/defender/wife either.

There are plenty of bystanders who bear witness to our world.

That is hardly my title.

Aside from the impossible, there are few of John’s burdens I don’t share or carry.

Few of his wounds that I don’t bleed from too.

I am in this trench, sleepless and under fire with him.

And it’s recognizing this reality between us that gets us through the every day trauma of brain cancer.

Together we minister to each others’ worries and pains, hold each other tight and pour love over each other, in every way we know how.

It keeps our marriage alive.

After all, what is marriage but best friends loving each other.

You don’t think brain cancer changes that, do you?

He’s feeling better on the new treatment right now.

We have hope.

4 Comments

Filed under Glioblastoma

Every Moment…


Every moment is a deep breath and a step forward.

Everything stripped to its simplicity.

A rebirth with each raw heartbeat.

And still…

There is only Love.

Written 08-03-2016, 2:57pm
Copyright © 2016 by Julia Meek Chambers, all rights reserved.

4 Comments

Filed under Glioblastoma, Poetry, Random Thoughts, Writing

The Things You Dream When Your Husband Is Fighting Glioblastoma


Go Grey In May - Glioblastoma Brain Cancer Awareness Graphic by Aberrant CrochetA few nights ago I had this dream that I was approached by vampires.

We can cure your husband, they said.

We’re really the only cure for cancer there is.

All your husband’s knowledge, all his skills, all the things that he knows that nobody else knows…

These things can live on.

They can be preserved.

We can save your husband.

And in my dream, my husband thinks hey – that’s a great idea!

What a great solution, he says. It’ll save my life, he says.

And I have an absolute fit.

I say – giving up now

to DIE

and become a VAMPIRE

is QUITTING!

And he says, no it will save me.

And it’s not like you and the kids have to do it, it would just be for me.

I will be saved and we can still be a family. You don’t have to become a vampire too.

And I say – if you don’t have the willpower to keep fighting

and keep LIVING NOW,

and you’re going to give up

and become a VAMPIRE

and be DEAD –NOW-,

what makes you think you’re going to have any willpower not to turn me or the kids in vampires too?

What makes you think you’re going to be able to control your new vampire personality traits?

You have a hard enough time getting through cancer treatment and controlling your cancer personality traits as it is.

I WAS SUPER UPSET!

And I woke up at some point because John had to get up in the night. Quite exhausted from all of my dream arguing.

And when I went back to sleep I continued to dream about insurance paperwork.

Then the next night, I dreamed that there was a trial where wives and husbands we’re donating their blood to help with some kind of research to benefit their husbands and wives who had glioblastoma. By comparing the blood from life partners they hoped to come up with something that would help cancer patients. Because in theory, they spend the most time together and live biologically similar lives. So study the partners and look for a connection.

So of course there were tons of us who were like – SURE!

Take some of my blood already!

I’ll do whatever you need to help save my husband, wife, lover.

And so I said yes.

I filled out paperwork and was brought into a little room where they’re going to take my blood and start running tests.

They bring me in, close the door, and they forget that I’m there.

And after a while of waiting I realized that everyone has left the building, and I am locked in this room and no one has noticed.

It all seems like some kind of cruel joke.

Another time I dreamed that without John, I couldn’t protect my children from being kidnapped. Crazy right?

Then there was the dream about John being in his last days.

And friends said they would come over for a visit, share a meal with me and see how he and I were doing.

Several people wanted to come around lunchtime or dinner time, so I made plans  and  got the house ready, prepared food for everybody and got ready for company.

But it turned out that everyone was too busy, and had their own things to worry about.

So no one came or let me know that they couldn’t come after all.

And I waited and waited after making all that food. Then John said I was silly, and wasted my time.

And I said, but I’m trying so hard to do this right.

The reality of GBM messes with your head enough while you’re awake.

And I’m only the wife of the survivor.

It’s a nightmare of a cancer, boggling the mind as to how it can even exist.

There’s too much to do.

I don’t need it eating up my sleep too.

Save

Save

Save

Save

Save

Save

Save

5 Comments

Filed under Glioblastoma

When waters threaten to overwhelm…


Dealing with grief and trauma…

It’s like handling an onion.

Cut back a layer, more tears.
More “lessons.”
More insight.
New “weaknesses.”
New strength that takes you awhile to recognize.

Sometimes it feels like multiple events chain together.

What I can tell you is that you must invest in more than the “big” things.

You must invest in little moments and little successes.

Humans desperately need to be of service.
They need to be of value.
They need to make a difference.
Life must have a meaning.
And they need more than just a few micro joys.

That is what offsets our darkness.

If there are not enough investments into the bank account of our positive experiences, when the negative and the demanding experiences come (and they always will), we risk overdraft.

There’s not enough positive to offset the negative.

It hurts our psyche. And then it gets taken out of our very organs and cells to try to compensate.

Even when you don’t feel like it, it’s important to invest in the tiny Joys that life can offer.

Find something different. Find something soul feeding for you.

Invest your time with your family. You never know when that’s going to change.

And you don’t want to feel like you ever missed out.

Even when you don’t feel like it, be your own fairy god mother and grant yourself a wish.

Put yourself to bed.

Nurture and reassure the hurting child inside.

Don’t be afraid to talk it out with a counselor. It’s not always appropriate to use family or friends to talk it out with.

Lean on your spiritual beliefs and look for answers in the little things.

Not sure what you believe?  Then begin a pilgrimage to find that.

Take it slow and savor each moment.

Much love. You can do this.

Last thing: write a letter.

Get out everything you want to say, and maybe don’t know yet that you do.

It’s not for others to see. You can even burn it later. But say in that letter everything you wish you could out loud.

I promise it helps.
::hugs::

1 Comment

Filed under Artist Information & Notes

I don’t know yet how to begin to explain…


It’s like all the worst possible challenges you can imagine.

Mixed up with experiencing (mostly) the best possible of people.

And we’re just along for the ride.

I have no idea where we’re going.

I just hang on to John.

Take the next step and breathe.

1:44am
April 10, 2016

3 Comments

Filed under Random Thoughts, Writing