How can my soul speak, when your language isn’t clear.
I flip through my collection of filters.
Each lens allows me to experience and express reality uniquely.
Colors, musical notes, equations, sound waves.
Geometric shapes, lights, patterns of stars and cells and DNA.
The mud, the bark, the rocks, the slime, the webs, the flowers.
Water, wood, metal, earth, fire and wind.
Each virtual reality filter at my fingertips.
My soul seeks, but the words are not there.
I cycle through like a ham.
Orchestrating a message of parts that even I cannot speak
And only raw flesh can comprehend.
I pull it all together into a ball and set it spinning.
A beacon, a light, pulsing with meaning.
A wolf scattered in space and time.
Casting my net into the void.
Searching for you.
Copyright © 2018 by Julia Meek Chambers, all rights reserved.
My name is Julia. My husband died from a terrifying brain cancer called glioblastoma. Tonight I want to tell you a story about my husband John…
John was my best friend in the world. I remember the first time he told me that I was his best friend. And I remember after years of marriage, still feeling bewildered. That John Chambers thought of me as his best friend. Because he was the toughest guy I knew. And and he was cool as shit.
I asked him about his sister, and his best guy friends, all of whom he was very close to. Because I figured surely they were his best friends before I was.
And he said “That’s true, but it’s different with you. You’re my life, you’re my breath. I trust you implicitly with everything that I am. I trust you more than anyone else in the world.”
And I was humbled by this 6’5″ operatic giant, who was intelligent and tough, and who believed in always doing the right thing. That the strong should protect the weak. That the able had a responsibility to use their strengths for good. And I was slightly terrified to be entrusted with so profound a thing.
John was a hero and a great leader to others. The guy who rescued people from elevators during power outages in a snow storm, because it was the right thing to do. And he was the only one strong enough to open the doors to do it.
He was Super Man, and out of everyone, he cherished and trusted me most.
I was stunned at the beautiful confirmation that our souls spoke beyond words. He was my everything. Together we were empowered. Together we could do anything. Together, no one could stop us. Together we were both better individually and collectively.
How did I come to be the one to hold the precious jewels of his heart and trust. It was easy for me to see why I trusted him. Why I fell so hard for him. He was such a good, good man. Not to mention he had an enchanted singing voice. But for him to fall so hard for me, to so deeply trust me…. How did it come to be?
John told me a story about a lesson he learned from his widowed grandmother. One summer during college, he stayed with her, helping her paint and repair the home that his grandfather built. John loved great conversation and he cherished the time he spent with his grandparents. At some point during this summer, the subject of relationships came up, and John made some comment to his grandmother about the kind of (tall) woman he needed to find to marry. And she told him “You don’t marry a body, you marry a mind.”
Her words struck his core profoundly, and he never forgot. “You are gorgeous,” he said to all 5’1″ of me, “But more than that, your heart and mind are astonishingly beautiful. I love who you are inside. Others don’t see it, but I do.” It was a raw moment of love and joy. To be truly seen, soul to soul. A moment I couldn’t believe I was lucky to have.
John told me often during our 22 years together that it was his job to remind me how beautiful I was, inside and out. To set things right and make up for traumas of the past. To help me to see my beauty and believe in myself. To help me experience that life could be fun. John taught me that I had a right to safety and that it was OK to have healthy boundaries. And he told me, over and again, unto the last weeks of his life, that I was the reason that he was a better man. That without me, his life wouldn’t have been enriched and that because of me he wanted that much more to be a better man. That he wanted that much more to do good things, to help others and make a difference in the world.
And here I thought it was he who taught me more about real love than anyone I’d ever known.
As I stumble through the shards left of my reality after his death, I try to hang onto his words. I remind myself that one of the best souls I’ve ever known never stopped thinking that my mind was smart and beautiful. He even thought I gave good advice. I always counted on his, and boy could I use some of it right now.
I wrote before about the gift of holding our children’s beginnings. The part of life that later our kids cannot remember. The part of their beginning that no one else sees. No one else contains more of those moments than we parents. We hold our children’s first stories.
I did not expect the astonishing reality of holding my husband’s ending. It is a terrifying, yet precious gift. To hold him, his heart and soul. To walk his last walk with him and share his nightmare. To fight for him with every drop of my blood, every beat of my heart, every breath in my chest. To crack wide open and pull out every possible skill I could to save his life. To be the one to bear witness to every honorable and gritty detail. The one who contains his final story. The one to be entrusted with his death.
I am his horcrux.
I hold his story. Together he can never be defeated.
Life has always been a series of Stories.
Some more enjoyable than others.
There’s always a Path.
There’s always a Creative Lesson.
There’s always some Pain.
There’s always some Joy.
Some days are Zen.
Some are Hell.
Some are Kittens and Sunflowers.
Some are Simply Now.
Some days we’re Aligned.
Some days we’re Not.
Life is a Line Graph.
Up and down, back and forth.
Never in the same place twice.
Except when Lightning Strikes.
When the heartbeat of my line graph flat lines,
I have to ask myself these things…
What are my trigger points and why?
What needs have I neglected?
What boundaries do I need to repair?
What am I not giving voice to?
What message is my soul desperate for me to hear?
What nourishment am I starving for?
What circulation has been cut off?
What relationships need cultivation?
What is the urgency I feel in this moment?
What is aching to Move?
What actually Matters?
What actions will help me to slow down?
What does it take to Breathe?
What programs are running?
What flow is missing?
What routines need to Be?
My dear, dear Julia
What Sign do you Need?
Copyright © 2018 by Julia Meek Chambers, all rights reserved.
“Why do you keep doing? It seems like no one notices. Has anyone told you they cared? What value is there in continuing to give in ways that may never return to you?”
And I don’t know what to say to her.
I have never…
what to say
I saw things differently as a child.
I see things differently as a mother.
I’ve been different all my life.
I’ve never focused on the “fairness” of giving without condition; of serving without thanks or feedback.
I see need and I scramble to salve it.
Because someone must.
The world is just mommy spit and kisses away from being lost.
I do not do
what I do
because I need
“But you are giving everything away and nothing is coming back,” she tells me.
I still don’t know what to say.
Is that true, I wonder?
Is nothing coming back?
Am I hurting myself?
Considering how comfortable my conscience is,
I doubt the damage would be too much.
Copyright © 2018 by Julia Meek Chambers, all rights reserved.
Making bone broth is one of those recipes/activities that has become a staple in my kitchen. I don’t always get to have leftover turkey bones from Thanksgiving (if I’m not hosting, I’m not usually making the turkey), but turkey carcasses make the bestest of bone broths in my opinion. Usually, I’m making bone broth from an organic chicken carcass.
Bone broth may seem “new,” with the Primal, Paleo and Keto diet movements, et all, but it’s actually steeped in history. From the root word meaning “restore,” the first “restaurants” were places you could go to get restorative bone broth, for the ill or the weary with travel.
It’s not hard to make and it’s so, so very good for you. I think everyone should learn how. So I thought I’d provide my must read list of resources to help spread the madness.
In my opinion, the list of links below represent some of the best information available on bone broth. Not just instructions, but why’s and variations. I think nearly half of these links are from doctors, which is nice if you want to learn *how* bone broth can help the body heal. With loved ones in my family suffering from diverticulitis and Lyme disease, I was especially interested in how bone broth could be helpful in healing from those diseases. I was raised on nutritional thinking and natural healing, so digging into resources on managing diverticulitis or healing Lyme naturally was second nature to me. The Eater.com link below provides more on the history of bone broth. Comparative recipes and methods can be found via the other links.
The 7 day broth link, and a post from a chef that I couldn’t find again (sorry), are the resources that convinced me to cook my chicken bones for at least 5 days. In fact, I often crock pot my bones 7-10 days with no problems. Works great. I also use my Instant Pot when I want a quick fix just right now. It’s a good broth, but there’s something I prefer about a week-long simmering broth that I drink from and add herbs and vegetables to every day.
I’ve researched through far more than just these articles, but didn’t save everything I’ve read. Hopefully this list will arm you with solid information and help get you started on your own.
Tell me how it goes!
Do you have other good bone broth links?
Please share them with me in the comments below!
Instead of asking, how can I make this easier?
Ask, what can I do to make this easier?
Instead of asking, how can I be happy?
Ask, what do I need right now to be happy?
Instead of asking, how are you going to do that?
Ask what steps will you take to carry out xyz?
Instead of asking, how are you doing?
Ask, what are you feeling?
What do you need? What is helpful?
What can I do that will make a difference?
What’s the most loving thing I can do for this person right now?
Instead of asking, how am I going to get everything done?
Ask, what can I cut out that will free up the most time?
What tasks can I rearrange to reduce the stress I feel?
What resources can help me win this?
Instead of asking, how is this going to work?
Ask, what is our plan? (Do we have a plan?)
What is our focus? What can we accomplish this week?
Instead of asking, how could they do this to me?
Ask, what boundaries have I not set?
What expectations do I have?
What needs have I not expressed?
What messages am I sending that I didn’t mean to?
Instead of asking, how was your day?
Ask, what was the most interesting part of today?
Or most entertaining? Or most terrifying? Whatever fits?
Instead of asking, how will I afford this?
Ask, what are our goals?
What do you need to meet our goals?
What actions are needed to make this happen?
What are some ways I can cut my expenses? Increase my income?
HOW is too often the nebulous, undefined question of stress, reaction and overwhelm.
For forward-motion, focused solutions and freedom, instead ask WHAT.
Community. Tribe. Team.
It’s what human beings are drawn to.
Even when we’re loners.
A network of friends and family and resources and colleagues.
My 10th level wizard on speed dial.
Outsourcing my spells.
Ideally united in the goal of making things better in the world.
It’s who we desire to serve, and what we desire to build.
Our hope for tomorrow.
As humans have never in history ever thrived alone.
I’m not infinite enough to learn and do it all.
So I appreciate the experts in my life.
The people who are willing to be experts in the things I can’t absorb too.
The friends willing to share the collective burden of tasks gathered in a single lifetime.
I selfishly hope my mechanic and chiropractor never, ever retire.
And in truth, I’ll help them however I can, should they need my skills.
I even already have.
Exchange of comparable value.
Expertise for expertise.
An ear for an ear.
Value for value.
The freedom to know that I don’t have to worry about “that thing” that I’m uncomfortable with.
Because, “I got people for that.”
Isn’t that a level of cooperation we all seek?
I appreciate the experts in my life who can focus on the things I cannot.
I want to be someone’s “people for that.”
As I wrestle with the packaging of my protein bar,
driving in the car on the way to my appointment,
I can’t help but think that I might enjoy a job in
designing better packaging for snacks on the go.
Aka, meals on the go.
Because… you know… no time to eat.
It’s probably not as glamorous as it seems in my head.
But I bet the job satisfaction is pretty high.
I listen to the sales rep tell me about their customer service.
He says, “Really, the best thing is to download our app. It’s basically a control center in the palm of your hand. You could do anything from the app! You can schedule service, you can chat with a representative when you need help, you can order parts, and you can look up all of your service contracts!”
“Oh that’s interesting,” I say. “So can I pay my bill through that too?”
“Actually,” he says, “you have to have a different app to pay your bill. So you need this app to keep up with your service contracts, and then you need this other app in order to manage your billing and payments.”
“So… I need two apps to realize the full benefit of all your services?”
I wonder if he can tell that my inner Gen-Xer is rapidly losing interest.
“Well yes,” he says. “But then if you want our premium membership services too, then you need this other app for that.”
:: blink ::
I get why Amazon has multiple apps. I don’t get why this brick and mortar store that I walked into does.
“Do I have to have your app in order to look up my service contracts? Or can I just look them up on my computer?” I ask.
“Oh sure,” he says. “It’s just easier if you have the app since it’ll all be right there in your hand.”
Considering that I have almost no room left on my phone, and I value what is already there, the last thing I want to do is install 3 apps just to realize all the benefits of shopping at one store I just walked into.
But that’s the way of the world today. Everybody wants you to have their app now. Everybody wants you to register an account.
Everyone wants to help you for the low, low price of your email, address, phone number and GPS location.
Just to get coupon discounts on fabric that used to come in the mail, they want me to create an account.
If I want to use any service with extra benefits, I better be ready to surrender my phone number too.
Gone are the days of just simple favors and discounts. Today everybody wants to track every conversion. Today everyone wants to plug into me 24/7.
And I can’t blame them. I mean I want to know how well my marketing efforts are working too.
However my inner rebel says enough is enough. There’s not enough of an “in” anymore.
If I don’t want it bad enough, I’m not signing up for one more account to keep track of.
Just how many different accounts with user names and apps is it reasonable to expect a single person to have? Our digital footprint is rapidly becoming humongous. And if I were to die tomorrow, how many fragmented bits of accounts are going to be left floating around out there because they’re not really that important. Should I expect my kids to go close all of my accounts for the fabric store, the grocery store, the appliance store, the department store, not to mention all the online places I might shop?
What about the newsletters for the city, the neighborhood association, the drug store?
Will there come a day when all my bills will be required to be paid via app?
Does there really need to be one more app? One more account, for that?
I’ve always loved the idea of having chickens, though I’m not actually sure on the follow through. I certainly enjoy buying eggs from friends who raise them.
When the kids were much younger, they took pottery and drawing lessons. The drawing lessons were especially helpful for my son, who had both dysgraphia and amblyopia. The lessons were amazing, and came from an art studio based out of a beautiful little ranch/farm property north of town. It was called Dragonfly Pond.
The family who lived there and owned the studio didn’t really have an actual “farm” like some of their neighbors, but they did have chickens, peacocks, guineas, geese, and all sorts of other birds that freely roamed their entire property.
Did you know that peacocks will hunt snakes? Such beautiful birds, and very loud.
In the back of the art center, the owners built a little bubbling brook; a man-made fountain stream, running through the back “yard.” There were bushes and Texas holey rocks and flowers and bits of pottery projects all around.
A picnic table and tree swing was set up next to the little stream. Parents and students would wait on their lessons outside in the little garden brook area (and enjoy the scenery). It was beautiful and the farm birds roamed everywhere. There was plenty to enjoy even while waiting for lessons to begin or end.
I enjoyed some blessed little Zen moments waiting in that little garden stream area for my kids. Waiting for the moments when they would rush outside, “Mommy, mommy – look what I made!” Cheering them on. Picking up acorns, feathers and rock treasures and soaking up the fresh air.
Though the art studio family had a fenced off coop for the birds at night, the chickens would literally lay eggs just about anywhere and everywhere. Eggs could be found in the rocks by the stream, by the parking area, even in the prickly pear cacti! Seeing eggs nestled up against the base of a cacti is one of those moments I wish I’d caught on film. I mean, just imagine…
Many of the chickens were very docile and there was one in particular that my daughter Jack would pick up and carry around. The little hen seemed to beg for her attention, follow her around. And once a year when the peacocks shed their tail feathers, the art studio would let each kid take home a feather.
Coming there every week was an amazing and healing experience for the kids and I both. Back in the days when John was deployed. The days when the kids first cried every night for their father.
And I always thought, you know – that’s the way to do it. It was obvious the birds were happy in this place. And it was such an organic experience for the kids and I both. If I were to have chickens, that would be the way to do it.
Sadly Dragonfly Pond has since closed and sold, years ago. Volente bought the ranch land backing their property with the intention of putting in a water park. I’m not sure if the park will ever be built, but there was a big brew-ha-ha when the land was first bought. Several homes on the other side of the fence sold. Supposedly the water park was going to be like a Robinson Caruso theme park, with tree-house hotels. But nothing has yet ever been built. Sad.
I’m just glad someone introduced us to the studio and that we were enriched by it. And during a time we needed nurturing. I’m grateful that it became part of our treasured memories before it went away.
I’m not sure I’ll ever own chickens one day or not. But if I did, that would surely be the way.
I joined the IP madness last year on Black Friday. Got a killer deal on a Duo Plus after researching them for a few months prior.
Ever since, I’ve been absolutely smitten by this little wonder pot.
I grew up with pressure cooking, but also never forgot the time my mom blew up a pressure cooker in our kitchen. Nor had I forgotten what a pain the pressure cooker pots were to clean. So I really kind of ignored the whole IP frenzy for a few years. After all, I had TWO pressure cookers in my cabinets that I just didn’t want to use, because I didn’t want something to go wrong or have to clean them up.
Now, I wish I’d never waited. It’s very portable and travels easily. I’ve used it to cook dinner in hotel rooms and to help out when I visit friends and family.
Instant Pot would have saved the day many times while John was sick. Not to mention all those times we’d look at each other around dinner time and ask each other – “Hey, did you pull the meat out of the freezer? “No, I thought you did….” “Sigh… Sh******!”
As long as it fits into the pot, it doesn’t matter what shape your frozen food is in – the Instant Pot (IP) will cook it in no time!
It’s been a big hit for our family, and our gatherings, but I tweak it this way…
I use Apothic Dark for the wine, skip the fish sauce, mustard and TOG seasoning. For the rub I use grape seed oil, Trader Joe’s 21 Seasoning Salute, Fiesta fajita seasoning and salt/pepper instead. And 2 bay leaves added to the pot, not just one. Rub it all over with minced garlic too! This time I also sprinkled on smoked paprika. AND I let the roast rest at room temperature for a couple hours before putting into the pot. Resulting in this beautiful baby!
Just like the recipe calls, I use the sauté setting to just barely brown the roast on all sides, then use the meat setting on high pressure for 4 minutes.
After it’s reached pressure, I let it natural pressure release (aka. NPR) for 25 minutes.
I didn’t use a thermometer on mine to gauge it. I just found that with this small of a roast, this got me where I wanted the doneness to be.
In this photo, though, the roast is a little more done than I wanted, because I accidentally let it NPR about 40 minutes instead of 25.
But still, not bad! And quite tasty!
Know what my 2nd most favorite part of making roast in the IP is?
Warming up leftovers!
So here’s the thing. You can warm up your leftover roast (steaks and such too) in the Instant Pot – without over cooking it, without slicing it and packing it in ice and putting in the oven, and without a number of other often suggested ways that usually result in overdone meat and lots of time.
Instead, put your leftover roast into a Pyrex container on a rack inside your IP. Make sure there’s at least 1 cup of liquid in there. Put the pot on the STEAM setting for 13-15 minutes. Then NPR for at least 15 minutes.
And voilà! It may not still be medium rare, but it’ll be hot and medium!
Just look at my photo on the right! That’s the same roast, warmed up on the STEAM setting 3 days later!
And it tastes almost like I just made it today!
Let me know if you try it! 😁
Tonight is one of those nights where I feel discouragement. The holidays are around the corner and I have butterflies about re-entering the job market and interviews – all in order to find a good paying position with good major medical benefits. And to become debt free after all this devastation. Heck, even debt reduced.
I haven’t had to look for a job in two decades. My self-employment was helpful to the family, but it never supported the whole family all the time. It took both John and I to make things work in life. Now I’m doing his job too.
In order to make sure my son stays alive, I need to figure this out. Because I’m not yet making it financially alone and without John. So many responsibilities. Part of me would be relieved to step in to help solve someone else’s problems for awhile.
It’s been 14 months and I look around and still see so much to do. So much still to pay off. Nothing feels quite like it’s going right, like trying to work at 10 times the speed with only thumbs to help. And the world weighs heavy on me.
I know all this will pass. I know I’ve been through the worst already. I know I have good reason to be stressed and I know that being stressed doesn’t change the reality of things. I know I’ve been through hell and maybe not quite back. I know I won’t feel this way in a few years. Maybe. I hope.
But tonight is one of those times when you wonder if anything you do has meaning anymore. If you’re screwing it all up and maybe you don’t have any clue what you’re doing after all. No matter how much advice you seek or how much you study. Nor how much you pray for guidance and help.
I’ve been there for others through times like this. Surely I can do this too.
…when this is a thing.
I was tempted, yellow pee balls and all.
We’ve recently had lots of full-on freezing early in our season after lots of rain, but no actual ice yet.
It doesn’t usually get this cold this early in the year here. Come Christmas, we’re usually wearing shorts.
Probably a good thing ice hasn’t materialized. No one here knows how to drive in it. We certainly don’t have much in the way of snow gear here, so people tend to die while everyone tries to go on with “business as usual.”
But that means my kids have barely gotten to see snow their entire childhoods.
When we do get snow, there’s usually barely enough to dust the yard, and it melts super fast. We run outside, scrape together as much snow as possible and make miniature snowman on the hoods of our trucks.
And we set out bowls in hopes of catching enough flakes to make snow ice cream.
If you’ve never had snow ice cream, it’s pretty simple to make. You just take a bowl of clean snow and add sugar and vanilla to taste. Pretty simple and tasty.
I’d say avoid the yellow snow, but as you can see below, in the very rare event that we finally get snow, usually the ground melts right away and all that’s left is snow on the cars!
So if you find yellow snow on your car, I’d say you have more than one problem at hand!
This is a photo taken a decade or so ago with my daughter Jack building her mini snowman and wearing the ear hat I made her when she was quite little.
Do you know – she still has it and wears it to college on cold days. Still looks almost the same.
If ever I wanted confirmation on the quality of my crochet designs and my choices in yarn blending, she’s my 21 year proof.
One more reason I like crochet.
Speaking about my Love does not hurt me.
It grants me freedom.
Hearing his name does not make me cringe.
It’s music to my ears.
The silence is what hurts.
The desert of his name upon your lips.
You who called him family.
Uncle, brother, friend.
As if he dies a second death.
Unremembered. Unrecalled. Unspoken.
Erased from our experience.
This isn’t the way we honor.
“Please speak of me kindly and often. I cannot be there for them.”
Copyright © 2018 by Julia Meek Chambers, all rights reserved.
In life we sail united
Stored our memories at 7-Eleven
Queso dip and garlic bread
We pay homage at the altars
An artistic angle beckons
At the crossroads of bells
Leathery wings cloud the fire
West to the waterfall
A rock is desired
A clift is found
Angels lift their voices
All for the want of a Doctor
Copyright © 2018 by Julia Meek Chambers, all rights reserved.
My neighbor told me the other day “At least people always want to hire creative writers like you for their marketing teams.”
I was startled by his comment. Like, is this a thing?
When I look at job postings, they always want a marketing or business degree, not an Theology/English/Psych major. I’ve never seen a request for a creative writer to join a marketing team. Maybe I’m looking in the wrong places…
We were discussing the need for major medical health insurance and having to look at corporate jobs in order to get good coverage for pre-existing conditions. I have to make sure that my family can continue to go to MD Anderson for anything cancer related now and his family has health issues he has to factor in as well.
He said he’d like to flip houses for a living, but in order to take care of his family’s health needs, he now works behind a desk.
I’ve had a lot of positive feedback about my writing, but no major company has ever told me they want me to write for their team. Then again, I haven’t outright asked one yet.
I guess there *were* those two different magazines, that pitched me to write articles for them; which I did and was paid for. It was nice to be pitched, instead of pitching them. But that’s not the same as looking at hawking your skills to a corporate job.
But I think I’m going to have to. Writing is my main marketable skill that might be able to support a family and pay for cancer treatments. Twenty years of working for myself, but never having had to support a family by myself. Now I’m having to consider re-entering the corporate environment and I don’t know how that will go. I’m far more at home with entrepreneurs.
Consulting all on my own is proving to be very difficult. People ask for my time and help, they back out, etc.. While John was the main bread winner, I could afford to be flexible and understanding with my time. Now I can’t. My son’s life could depend on the choices I make. And working for myself hasn’t yet paid off this year. Need to level up somehow. This is getting more difficult to make work.
If you know of anyone who would like help with writing content or Facebook and social ads and marketing, please pass my name along. I need new clients. Or a new company.
I ponder and purge and analyze.
I leave a record for my future self and others in need.
I mean why have a blog anyway, if it’s not to bear witness.
If it’s not to find the words that cannot be spoken.
To help others. To help us remember.
Already this blog has helped me remember things I don’t ever want to forget.
In the face of nightmares and trauma, such a task is more difficult than it sounds.
Every experience is data. But some experiences are like the difference between 8 bits or 8 gig.
The human mind can only process so much all at once.
And trauma tends to rape and rob us of the precious and good moments in the face of extremes.
We can focus on the trauma, or we can can dig past and seize the love.
I have sacred memories in here somewhere.
Memories I want. Memories I earned. Memories I am owed.
If I want to be able to see and remember more, I have to be willing to face the unwanted, so I can then look over its shoulder and see my Beloved behind.
But I need to acknowledge the unsavory to find the precious.
I have to dig in the muck to find my dropped pearls.
Come here Hell, it’s time for you to pay rent.
I have a job for you.
It’s Veteran’s Day.
John’s funeral was one year ago today.
His honor guard was made of friends and strangers, but all brothers in arms.
I got Ft. Hood to grant special permission for the honor guard to be at the ceremony an hour later than usual regs.
Friends came in from around the US to pay their respects.
Almost our entire wedding party was there for me. Save two. One of whom is in Germany.
My brother by blood came in from the north-west and stayed a few days to help me, as did our uncle.
My father and my step sister came and helped take down and clean the hall I rented.
I’d paid a non-refundable upfront cleaning fee to the city to make sure we didn’t have to worry about cleanup.
But as it turned out, half of everyone helped clean up anyway, while people stood in line waiting to talk to me.
I shouldn’t have paid the fee.
Our local American Legion let me borrow their colors and sent a representative.
The room was filled with veterans, officers, students from John’s classes, close friends and colleagues from work.
But also there were alumni from the theology college where we met. Aside from John’s sister, parents, the kids and I.
Our chosen brothers and sisters were there. As were our adopted nephews and nieces and other family we choose.
John’s and my special little ones from Houston came, the oldest of which came up to me at the head of the line. He was trying to hold it all in. When I reached for him, he let go and fiercely hugged me, bawling.
I held him and we cried together, while everyone watched.
It’s ok honey. You can cry. You don’t have to be strong. I love you. John loves you. It’ll always be so.
Friends from a variety of facets within John’s life spoke about him, his guitar playing, his singing, his service in the military, his instructing that saved lives. And then there were the 4 of our adopted girls, who expounded on the father figure he was to them. The good man they recognized him to be.
Some people didn’t know John could sing opera. Some people didn’t know he played guitar. Some people didn’t know he was another dad to a gaggle of young adults. Some didn’t know he had a theology degree and could have been a minister. But there were countless words shared with me that night about how John had changed someone’s life.
His brothers in arms made sure everything was right, that John’s honors were prepared properly.
They chose as well to give him the honor of a powerful Roll Call.
It was a simple funeral, at a city facility, but with much love and grace.
And today, I didn’t know how to spend myself.
I wanted to reach out and find his hand.
And I resented that I had things I had to do instead of sitting and trying to hear his voice.
I looked through one of his military deployment bags and found his wallet photos of the kids and I from his first deployment. It was stuck inside a box of allergy meds. And later I saw a hawk fly through our back yard.
Maybe that was him.
Your girl just won 2 senior scholarships this week honey, for academics and for leadership. The very first senior scholarships awarded by her college, in the new degree plan she’s in. Your baby girl did it.
And your son, he’s feeling better and doing great at school, but you should hear his music. It’s amazing and so beautiful. I’m so proud of the music in his soul, that I just wish I could create a movie film for him to showcase it. He needs a Mac though. Little of his music homework can be done on a PC.
You would be so excited for them.
And your Boo, she’s just so cute every day. She doesn’t hiss at my glasses anymore. Hard to believe it was two years ago last week since we brought the kittens in and gave them a home.
I love you.
Another good man is dying in great pain tonight, while his loyal wife loves by his side.
She’s reached out multiple times to our prayer text chat.
I don’t know her. She doesn’t know me. We’ve never met.
A friend of a friend, desperate to try to help me through the tasks set before me, asked if I’d like to receive encouraging bible verses.
She sends them via group text every morning. I said sure.
I know she spends time, prayer and meditation on what verses to share each day and I find them pleasant. And I deeply respect and appreciate her efforts to show comfort to others.
More recently there have been extra requests for prayers, as this man’s cancer battle is ending.
The texts are brief, but potent with pain.
It hits my heart and I soul-search on what I can say that isn’t trite, or cliché, or preachy, or meaningless? Or that doesn’t send me into a tailspin of anxiety myself.
After all, I know better than most what she’s going through.
I know she feels hopeless and I’m not sure I can give her any. But I’ve found more than anything, the gift of witness is something powerful.
I no longer need someone to tell me things are going to be ok. They aren’t. They won’t be. I’ve survived more than most people can imagine and I’m quite aware that life goes on, whether I want it to or not.
But acknowledgement. Compassion. Witness. Those are powerful supports when the worst has/is happening.
I can’t stop the raging sand storm, but someone please pull out your camera and acknowledge that the storm exists. That my hair is a fantastic wreck. I really did see Big Foot.
“Ah, this is nothing. You’re too strong to let this get you.”
This stranger isn’t the only one. At least 3 of John’s and my friends are fighting for their lives against terminal cancer right now.
I don’t know what’s happening to gen-x, but deep sadness pervades our circles.
Encouragement has been a lifeline for me, and I very much want to provide encouragement for others as well.
I know how life saving it can actually be.
I also understand how hard it can be for others to figure out what to say.
No one has been trained for these things with the modern eye and understanding. No one wants to hurt me. No one wants to be afraid or feel these things or contemplate the possibilities that they might ever endure something similar to what they see when they glance my way.
Even in understanding all these pieces, sometimes words fail me when I want to encourage others.
Perhaps because I’ve already processed too much data for the day, and my words don’t want to work anymore.
And sometimes I wish I could just reach out and hold somebody’s hand, or hug them, or cry with them to show them I care and they’re not alone. Our experiences may be different, but there’s a fraternal understanding of the nuances of trauma, grief, disease, tragedy and loss. Something I’ve come to recognize with honor.
We try too hard to do everything right, that we are willing to freeze our souls just so we don’t make a mistake. We feel compassion, but we’re afraid to show it, or speak. We’re afraid to risk, so we bury the talent we’ve been given, to make sure we don’t judge or cause harm to others.
But risk is in the very air we breathe. We cannot escape it.
Nothing which has changed the world for the better has ever come at less than the price of risk.
So much of the time we stop telling people the things we feel. Messages never said, thoughts never spoken. We should all write more “letters” in the world.
If we never held back on communicating the love and encouragement we feel, I wonder how would that change the world?
Maybe it doesn’t change the world. Maybe it only changes one moment. But even that solitary seed has to count, right?
I keep reminding myself that there is No Fear In Love.
Every small nudge of encouragement, even a simple “thinking of you” is helpful; like a palm at my elbow, helping me find balance when I’m dizzy. Like a whisper on the wind; God’s reassurance working through others.
But then there are the insightful and creative responses too. And they do more than steady me.
They deliver a bit of Life essence, something I have given out so much of and need to replenish. If given in love and honesty, they’re more than whispers – they’re God breezes and life-saving Light.
I’m not the only person in the world to go through awful things. So I feel it’s only right to learn from these gifts and seed it back out to my world.
I realize it’s an assumption that others experience this as I do. But it feels like Truth. And I want to be better and more generous with my love and words.
I don’t understand God’s plan for us, but I’m convinced that if we’ll allow it, He’ll use us to transmute these things.
I have long thought of tribulations in Life as a series of Whys, that if we consciously work with the Divine, will turn into Wows.
I haven’t found my big wow yet, but I look forward to discovering it someday.
And I hope you find yours too.
My 21 year old daughter was sharing the story of her day with me tonight, while I mixed myself a cup of dandelion coffee in my Texas Starbucks mug.
I’ve found dandelion coffee to be quite enjoyable as an evening time hot drink. Sometimes at night you just want something hot to drink. And with dandelion coffee, there’s no caffeine to worry about. And plenty of health benefits to consuming dandelion.
If you’re curious, Dandy Blend is my favorite. It’s a blend of roasted barley, rye, chicory root, beets and dandelion and it tastes very nice to me.
I’m a coffee snob too, but not in the way most people are. I like good coffee, but I cannot handle dark roasts. They kill my stomach with the extra dietary histamine inherent. Many artsy coffee places are really into dark roasts, but I simply can’t be. But it doesn’t mean I’ll drink crap coffee if I don’t have to. I’d rather drink Finnish coffee over Folgers any day.
So the fact that I enjoy the dandelion coffee is kind of a feat in itself. I add milk or cream to it, just like my coffee. No sugar. Although, I do enjoy adding a dash of dehydrated marshmallows to the drink at the end. It’s like a healthier version of grownup hot cocoa. Sort of. There’s no chocolate in it, but it almost has a cocoa flavor to it. I’m guessing its the chicory that lends to it.
As I reach for the makings, my daughter’s filling me in on the deets of the afternoon.
It was an interactive conversation, though I don’t remember all the parts. But to be honest, it doesn’t really matter. We were communing and sharing and that is what was important.
When my daughter is animated, she tends to speak very quickly.
Multiple times I heard her say something about people messing with her sneeze.
Like this is something undesirable.
It’s an expression I just haven’t heard before.
However, I get it. I mean having your sneeze interrupted is incredibly annoying.
In some cases, maybe even torture.
Like worse than a shop-block.
But with her words running together so quickly, while I’m rummaging with the coffee bag, I ask her to repeat herself.
“And so I’m telling them, you’re messing with my STEEZE!”
Steeze? What the heck is that?
It’s a combo of the words style and ease. So if someone’s messing with it, it’s like someone’s messing with your mojo.
Have you ever needed to sneeze and someone tickled you or did something to block your sneeze?
I’d say your mojo would be pretty messed up.
I believe the only way to get through crisis is to focus on the right now, and the just next.
That and healthy boundaries.
Obviously there are some things that could have long-term impact on your family if they don’t get done, but…
I wish I’d spent less time handling paperwork while John was sick, less time letting people tell me what I needed to do with said paperwork, and spent more time just holding my love’s hand, giving him every kiss I could and snuggling every chance.
I wish I took more naps with John. Sat on the couch and watched TV with him more.
It’s not that we didn’t have those moments. We did. But we could have had more before he died.
I did a lot, yes, and in a weird way, it was our trips to Houston for cancer treatment that gave us more time together, than at home when all the stuff had to be done. When the mailbox screamed at us.
But even so, I still wish I’d forgone some of the papers and phone calls and spent more of that time/energy with John.
In the end, maybe it helped some that I was on top of papers, but it didn’t prevent issues completely, I’m still in paperwork hell. The mailbox is just as loud and off-key.
And right now, I don’t care. I just want those moments with John. Once more his arms around me.
Don’t take it for granted. Don’t let the world tell you to focus on anything else.
The little moments matter so much more than you know.
Fact: John was diagnosed with primary, unmethylated wildtype glioblastoma multiforme, a grade 4 brain cancer. Aka: GBM.
Fact: GBM is always grade 4. They do not use stages in brain cancer, much less “stage 4.” Primary GBM originates in the brain as GBM. Secondary GBM brain cancer is when you start out with a different kind of cancer and it mutates to GBM. All GBM, primary and secondary, is grade 4.
Fact: GBM is specifically a series of DNA errors that involves nearly every foundational cell of the brain, including stem cells. Cells which by their very nature are very “fertile” and good at replicating quickly. It’s not just one error or even 2, but a complex series.
Theory: They think that for some reason, perhaps due to some sort of crisis, some part of the regular system of the human body slips up and doesn’t do its job. Like a gear missing a beat or a tire spinning out. And something does not happen in the order it’s supposed to. Suddenly multiple DNA errors are created.
Theory: In the case of secondary GBM, the argument can be made that it’s the first type of cancer that wasn’t GBM that creates the crisis that allows the GBM DNA error series to be created.
Fact: Fighting all other brain cancers grade 1-3 is not only easier and more successful, but the survivability of the patients are also vastly different on the whole. GBM is a different kind of brain cancer from all others. And there is usually more time to treat grades 1-3. Average mean life span of grade 3 brain cancer is 10 years or so.
Fact: Dietary treatments that extend the life of patients with lesser grades of brain cancer will shorten the life of a grade 4 brain cancer patient. Studies have proven that GBM is biologically a very different kind of cancer.
Opinion: People joke that calling GBM cancer might be a disservice. And that if we looked at it as a disease from space, or an engineered computer virus, we might be better off so we stop comparing it to “average” cancer.
Fact: The problem is, once that particular series of DNA errors that is known as GBM is created, it does not die. In fact, it could be considered immortal. And the error exists on the micro-cellular level. Unmethylated GBM knows how to repair its own DNA, making it not only immortal, but nigh indestructible.
Theory: Some argue that it’s like a program or a blue-print that once your body has created it, it can’t forget and stop creating. That maybe it’s not that there are cells still there to fight, but that your body can’t forget and stop creating the error in the cells.
Fact: With the blood-brain barrier intact, it is nearly impossible for treatment to affect GBM cells. Especially because there’s so little time to get ahead of its aggressive growth.
Opinion: If there was a way to harness GBM’s immortality, it might have medical significance. But for now, it just simply follows a program and kills the patient before anyone can figure out why it even exists.
Comparison: Like a computer getting hit with a backdoor trojan. By the time you know it’s there, it’s too late. Except you can rebuild a computer.
Fact: Without treatment, the current mean survivability of a GBM patient is 3 months without treatment and 12-15 with surgery/chemo/radiation combined. A GBM tumor can double in size every 2-4 weeks.
Fact: Less than 20% of primary GBM patients survive past 2 years. Less than 5% survive past 5 years. Of those who survive longer, no one fully understands why.
Fact: the words “remission” and “cure” are never used in the GBM medical world. Medically there is no cure for GBM. No one is ever “cured.” There is no remission. There are long-term survivors. But even outliers who magically survive more than a decade later still undergo ongoing treatment and monitoring and are not considered cured. You have to have the right genetics to survive longterm with GBM and no one understands why yet.
Theory: Survivors seem to have 3 main things in common. 1) Religious faith or will to live. 2) Their youth and good health otherwise. 3) And their support network. Patients with the most support seem to be the ones who survive longer.
Personal Fact: While they do not think it causes cancer, John’s doctors say that a relationship has been found between a cancer patient’s survival and a positive attitude and focus on enjoying life and reducing stress in their lives. Negative attitudes, outlooks and fear all seem to create an environment that tend to support the spread of cancer. By far, the long-term survivors seem to be the ones that deal with their diagnosis and live/love/thrive anyway. His doctors truly mean it when they say – go LIVE, make HAPPY MEMORIES and ENJOY your life!
Fact: Nothing natural acts fast enough to fight GBM alone. By the very nature of natural approaches, they work best slowly. Combined with the standard surgery/chemo/radiation protocol, natural methods may help, but there’s no replicable proof. They can’t always prove when a trial is the reason someone lives longer.
Fact: GBM is *a* brain cancer, but it is not like other brain cancers. Other brain cancers allow more time to explore more options and try natural methods. GBM is voracious and fast. It is the fastest cancer known.
Fact: No one has yet survived primary glioblastoma long-term (2 years) on natural methods alone.
Personal Fact: John and I were already on the paleo diet for a few years prior to John’s diagnosis. John’s oncologist was actually very pleased that we use the paleo diet already. One of the biggest reasons it’s good is because it’s an anti-inflammation diet. And fighting inflammation is a helpful part of fighting cancer.
Opinion: Or is it that inflammation gets in the way of healing cancer. Remove inflammation as a possible barrier and you have a better environment to work within and better success because it’s not there to f* things up.
Fact: Researchers more recently found that while ketogenic shows promise, and is helpful to GBM patients who suffer from seizures, many GBM patients also fail to thrive because the diet is so restrictive and their bodies are overwhelmed while they undergo treatment. So they instead looked at modifying the keto diet into what is essentially paleo, but they did not focus on organic sources or some of the other philosophies on food sources that are hallmarks of paleo thought. Just the low carb, low/no grain, high fat, high vegetable diet with an emphasis on using cold-pressed coconut oil. And they found it not only worked much better but the patients could thrive. And that coconut oil in particular was key in that success.
Theory: Some people believe that blood-sugar is the problem.
Fact: Researchers discovered that diabetic patients are less likely to get GBM.
Opinion: For other cancers, it seems sugar very much so is an issue. However, the paleo/keto diet likely helps some GBM patients not because of blood sugar levels, but because of the anti-inflammation.
Fact: GBM patients have to be careful and balance their sleep and blood sugar levels to keep them from dropping too low. A drop in blood sugar or lack of deep rest can trigger seizures and stroke. Which creates more brain damage and struggle in the fight against GBM.
Personal Fact: In John’s case, they noted that his blood sugar was actually borderline low. Even while he was on steroids, which would normally cause someone’s blood sugar to be unnaturally high, John’s blood sugar was low. Low enough they cautioned us not to let his calories drop while he underwent chemo and radiation. If our regular primal/paleo diet had John’s blood sugar levels already at a low state, then there’s no way his GBM was caused by blood sugar as some would try to assert.
Reflection and Frustration: Even before officially going paleo, we had always been incredibly health conscious, eating organic as much as possible, picky about our foods and food sources and I have a literal apothecary of herbs, vitamins, minerals and natural supplements. John was a focused athlete since before joining the Guard. He never did drugs, didn’t smoke and everyone commented on the incredible health of the rest of his body. We didn’t live near mines, power stations or anything else considered to be hazardous. I’m allergic to many modern medicines and have been on the path of natural healing for most of my life because of it. And yet, in spite of John’s low blood sugar, our organic living, and all of this… we’ve found it depressing that none of this protected John from getting GBM.
Opinion: If all of this stuff about being able to treat GBM naturally or via diet were fact, this should never have happened to John.
It’s just one more proof in what we’ve been told by the researchers at MDA. GBM is a unique demon that discriminates against no one. Sadly even new babies have been victims. 😦
Personal Fact: John and I chose to pursue medical treatment, combined with natural efforts at home. Doing everything in our power that we could to uplift his/our spirits, support his liver and kidneys and overall health in general while he processed so much medicine. We added several things we’ve found genuine research on that seem to show promise in supporting regular treatment in fighting glioblastoma. And John’s oncology team allowed us nearly everything we wanted to try, even though they didn’t think it would help.
Opinion: GBM is a complex DNA issue that requires an equally complex approach to treat. And no one thing, medical or natural, is going to conquer it. It will take a hybrid approach from all fronts. If it takes a multi-pronged approach to successfully fight GBM, then regular medicine alone is not likely enough either.
Our family update for those following along.
As John’s birthday just passed (he would have turned 50) and now our anniversary and the holidays approach, the kids and I are working on some brain cancer awareness and charity projects in honor of John and his courageous fight. And also in compassion for those patients and families in the thick of fighting the hard fight, who are in desperate need of assistance.
Orphan diseases receive the least amount of financial and donation support, including glioblastoma. And while support systems and charities are in place for many more common cancers, glioblastoma is so rare, aggressive and terminal that there is almost no assistance available for the families of GBM patients. Many of us GBM widows want to change that, one step at a time.
Towards that end, here’s what the kids and I are working on.
1) We’re asking friends who shop at Amazon to enroll in the Amazon Smiles program and to select the Dr. Marnie Rose Foundation, or Greg’s Mission, as beneficiary of the program to help raise awareness and funds for brain cancer research, patients and families. The Dr. Marnie Rose Foundation supports child and adult brain cancer research. Greg’s Mission was founded by long-term glioblastoma survivor Greg Cantwell. His foundation provides critical and free 1-on-1 coaching and support to brain tumor patients and families around the US, and even internationally. Many hospitals refer their patients to Greg for much-needed help, but donations are crucial to make travel possible and keep this mission going.
When you use https://smile.amazon.com to buy from Amazon, it costs you nothing, but Amazon will give 0.5% of your purchase to the charity you choose. It’s a very easy, no extra cost, way to support the charity of your choice. For more information visit: https://smile.amazon.com/about.
2) Our daughter Jack has designed and released some cute mushrooms, collectible gold-plated enamel pins (her drawings turned into pins) to help raise awareness and donations for brain cancer this holiday season. The first release of gold-plated pins is already in her Etsy store named Squash Rabbit, and another design release is on the way, including some roses. 20% of proceeds will be donated to brain cancer charities. You can find 3 color variations of her little shroom pins to choose from – there’s even a grey option, since it’s the color of brain cancer awareness. Find them in her new Etsy store here: https://www.etsy.com/listing/637121368/moody-shroom-enamel-pin.
Some of you have watched her grow up drawing, so you can imagine how excited she is now to have these special enamel pins of her artwork to share! 🙂
3) I have begun a crochet related charity project that I will be announcing soon! And a neat little bakery in Idaho is helping me. Stay tuned!
It’s been 2 years, 7 months and 30 days since the shift in our family’s journey began. When my John was diagnosed with glioblastoma. And 8 months ago when our son was diagnosed with a rare kidney cancer. Your prayers and support as we keep pushing through are greatly appreciated. To everyone who has followed along and simply made a point of witnessing, of reaching out and holding our hands through everything – our utmost gratitude.
– ♡♡ –
#RaiseAwareness #Glioblastoma #CureGBM
I’m one of those people who have experienced miracles. I walked away from a car accident I shouldn’t have 13 years ago. Maybe for the 2nd time, though I’m unsure how bad the car accident really was or not, when I was 6 . The Cougar was totaled though. I remember falling into the wheel well with the jugs of water we had in the car.
There was the time I was drowning in a lake. My mom’s best friend was supposed to be watching me, but she was chasing her own son (my best friend back then) who’d headed over to the diving board on the dock. I knew better than to go over to the deep area, so I waded in from the shore and got swept off my feet. I remember bobbing up and down in the water, panicking, watching the big kids play ball and paddle board around me. I couldn’t swim. I couldn’t float. My body sank. I held my hands up, but all I could see was the green water around me and the surface reflecting above. And a great sense of calm fell over me as I floated there. It was beautiful, and I let go. Everything faded dark and I heard voices as someone wrapped their arms around me. I woke up on a picnic table with a horrible sore throat, pain in my head and shivering. My mom’s friend Jean just wrapped me in a towel.
There was the night I nearly miscarried my son. Bleeding heavily and knowing I was about to lose him. Bracing myself to be ready to experience what millions of women before me have experienced. And then I heard a voice in the darkness that I could not explain, that simply said, “Mommy, don’t give up on me.” And I knew he was alive. For 9 weeks we didn’t know if our baby would live or die because scar tissue from my endometriosis had torn a hole in my uterus. He was only 20 weeks along and too young to be delivered. The doctors and nurses were concerned that I wasn’t facing reality, as I was told over and over again that I was going to lose this baby. But I was calm – I knew he was alive. And while I bled throughout the rest of the pregnancy, I didn’t lose him.
And there was the whole not knowing I couldn’t even have kids in the first place. But if I hadn’t ignored the naysayers and met the right people, who led me to the right specialist out of New Orleans, he wouldn’t have discovered that my tubes were closed. Something they told me was a birth defect and that at the time couldn’t be identified with just a scope. And they fixed me when I had that laparotomy for endometriosis. I would have tried to have kids my entire life. And instead I later gave birth to two miracles. The surgery was not 100% successful, but I was able to live a much more normal life afterward, because the damage caused by my endometriosis had been off the charts for someone just 23.
And let’s also not forget that my mother and I were run off the road into a ditch on the way to New Orleans to get that surgery. It was the strangest set of circumstances and I remember Mom sitting on the curb of the mechanic shop after we were towed in, asking me if maybe this was a sign from God that I was not supposed to have that surgery. The car was completely undriveable and would take days to fix, but I was supposed to be at the hospital the next day. We were stuck in nowhere LA. But somehow Mr. Havir, a minister I knew and called, knew someone who called someone and somehow 2 airline tickets were bought, someone showed up to give us a ride to catch a plane from the nearest big airport in some town not where we were. I had no luggage with me, I’d just thrown things into Mom’s car. Not only did the airline hold the plane for us, they helped us throw my stuff into boxes so it could be checked. I remember running through the airport with my mom and a minister and an airline employee I didn’t know with these awkward cardboard boxes of my clothes and things. I can’t remember the plane flight, but I made it to my surgery. And a family I met a few years prior when my college choir toured through their area, opened their home to us and gave us a place to stay. To this day, I always pack my clothes in suitcases now, no matter how short or local the trip or stay.
And there’s the night the remnants of hurricane Harvey came through, soon after John was in ICU. The night torrential rain poured down the walls of his hospital room in the dark and began flooding his room. Our son was staying with John that night, but our daughter and I were late to leave, because John had a seizure. After things seemed to settle down, we headed down to the lobby to go home, only to discover that the rain and trees were literally horizontal outside, while the lights in the parking lot sputtered and sparked like a fireworks show. We headed back up to John’s room, all the lights dimmed for the “night,” only to look at the floor and think it didn’t look right. And then I realized that half the floor was covered in water and it was moving. And worse, there were electronics units in contact with the floor, including John’s Optune unit. I immediately unhooked everything I could reach and screamed for personnel to help. If John had not had that seizure, and I had not tried to leave too late, making it unsafe for my daughter and I to go home in the weather outside, someone stepping into that water might have been electrocuted in that room that night, a nurse or most likely our sock-footed son. And who knows what could have happened to John, his life support, several things could have gone very badly and horrifically. It was terrifying to be thankful that John had that awful seizure.
There’s the time our son was diagnosed with 6 different medical issues that negatively affected his eyesight, requiring therapy that we didn’t have the money to pay for and that insurance didn’t want to cover, even though it meant the difference between being legally blind and able to drive. After the doctor presented all their findings, we found out how much the treatment would be. How? How do we make this happen? We have an answer and this can be treated. I remember praying to God please help. I’ve looked over the finances every way I can think of. I can’t see how this will work out. Please, please show me. Please provide the means for our son to have this treatment now that we finally know what’s wrong. Please provide it in a way we cannot deny. I don’t know how to pay for this, but if we don’t, our son will be essentially blind. And it’s preventable! I cried and prayed my heart out. And 3 weeks later one of the credit cards I closed during John’s deployment sent me a letter. It stated that they’d recently audited their system and discovered that they owed me money. It was a couple thousand dollars. Enough to start our son’s treatment. Since when does a credit card company refund thousands of dollars? I didn’t question. I knew what it was for. A few months later a fellow crocheter also sent us some money to help our son out. How is that not God in action?
I could go on with personal stories of magical moments of hope bestowed to me and through me. The people John helped rescue. I’m no stranger to miracles. Nor kindness. Nor love and service, both given and received.
I didn’t expect there to be silence now, when I need hope more than ever.
While my faith has been challenged in every way I couldn’t imagine, I do still believe in a God. Even though I don’t understand why so many terrible things have happened. If God is the comforter of widows, then please dear God, comfort me.
So I’ve been asking for help, with all of the pieces that have to be resolved, all the work that has to be done, all the things I don’t know how to do, all the things that keep breaking, like my car, the lawnmower and the fence.
And I suppose if broken things were a sign that my husband’s spirit was still around, then all the things that keep breaking down must be John screaming at me. But it just doesn’t make any sense. Because all these broken things are causing harm to our family, and are hurting me. And there’s no way John would ever do that. If being in contact with me meant harm to me, there is no way the man I knew would ever contact me then. Because he would sooner disappear and exit my life than cause me any harm at all. And I just don’t believe that’s how it works.
So that doesn’t make sense to me either. That’s not the kind of language John would use to try to comfort the kids and I.
And yet this pattern of adversity persists, with a safety net following behind. The yin and yang of whatever this new reality is.
A lot of that surrounds the car. Like the shifter cable breaking Friday afternoon. Or when my car up unexpectedly broke down after visiting family in another state over the summer. A starter coil went bad after I replaced the spark plugs on my car. The first happened a month before my trip. The second happened in another state during the middle of that really bad heat wave, but I managed to limp over to a nearby Love’s where there was food and air conditioning. And I just happened to be within 30 miles of grandma’s house where my uncle lives. I was stranded in OK for 5 unplanned days, but it wasn’t bad. Just an expensive repair. It could have been way worse.
Or recently when a lady hit my daughter while she was driving John’s truck. Thankfully nobody was hurt, and everything happened under 10 mph. But the lady hit the back wheel of John’s truck with the front corner of her car hard enough that it broke something in the wheel assembly. Now she’s trying to claim that my daughter somehow hit her while she was parked on the side of the road; this after she tried to get my daughter not to file with insurance. Our insurance company says they have no idea how she can possibly make such a claim with all the evidence laid out. Everything is still in arbitration. It was in discussing all these things with our rep that it came out that when he was 17 his father died from glioblastoma.
Glioblastoma is an orphan disease, affecting less than 200,000 people in the US. And it just happened that the claims rep I got, when I called after my daughter’s frantic phone call to me from the scene, lost his father the same way she did, at close to the same age.
TO BE CONTINUED…
Two weeks ago today was my birthday. And a week ago yesterday was John’s birthday. He would have been 50 this year. And you know he would have rocked this party.
It was our tradition every year to reserve the weekend between our birthdays as our annual standalone date night. With only 6 days between our birthdays, there was usually a full weekend between our birthdays. This year my birthday fell on a Sunday, and John’s fell on a Saturday. We would have spent the entire week doing special things, cooking lots of great meals, all leading up to his 50th birthday.
I decided I didn’t want to be alone for his birthday, so I held a Halloween party gathering of our local friends instead. Doctor Who TARDIS on my front door step and a yard full of spiders and angels and all. John always wanted to get a bunch of angels for us to move around the yard every night. I didn’t have the energy to move them around, but this year 14 angels from 3 different cities graced our yard around the TARDIS. Not every friend or adopted family made it, and some had to come late, but it was really nice to see the ones who came.
It’s been 13 months, 2 weeks, 6 days, and 85 minutes since John left this world. And I’m ever seeking signs that he still exists. He and I met in theology school you know. We both have theology degrees and he could have been a minister if he wanted. (I wasn’t allowed to, being a girl and all. At least not at that institute.) I guess my point is, we’re not strangers to religion, or church, or a lifetime of service or God. My faith has never been challenged as it was during John’s fight. And in the face of death, his never wavered. If there were ever a recipe for comfort after death, you’d think we had it.
And yet the silence is deafening.
The frustrating thing is, I can’t even seem to have nightmares about him, much less dream about him. And while I believe in God, I don’t have the experiences other widowed spouses have reported about their dead loves. I don’t experience the kind of comfort they do.
In my support groups, there are all sorts of stories of people actually seeing their passed away spouses, feeling them around them, hearing their voices talking to them, flickering lights, objects moving, seeing signs from animals, feathers and rocks in the shape of hearts and unknown gifts left for them. One even reported hugging and holding her husband, and knowing it was real. Others report that the broken dishes they find and other things are signs that their loved ones are still around, though I find it bewildering to consider that someone who loves us would run around breaking things after they’re dead.
And let’s not forget the Cardinals. It is said that cardinals are the spirits of loved ones coming to check on you. But my problem with this is that cardinals were my Grandma Dot’s favorite bird. I’ve grown up with families of cardinals in my backyard, and my grandmother’s backyard, my entire life. I watch them bring generation after generation of baby cardinals to my bird feeders. While cardinals are usually territorial, in my experience multiple families will live in the vicinity of my backyard. It is not uncommon for me to see three different male cardinals in my backyard in a single day. It is always been this way. And while I always think of my grandmother when I see them, it’s because they were her favorite. There are always cardinals. And to me this beautiful bird is something John would specifically never use to show me he’s there. Because he knows.
All these stories from other widows… but as usual, I don’t experience any of these things. I’d be happy with even just dreams. I’ve dreamed dreams my whole life. I saw my aunts, uncles, grandfathers and grandmothers after they passed in my dreams. They were detailed and comforting dreams. But I don’t get them for the man I spent 22 years of my life with. The man whose life I desperately tried to save. It really is as if a black hole opened up and completely removed all traces of him.
And I guess as a deeply spiritual person, married to a deeply spiritual person, desperately in love with each other, determined to fulfill a number of missions of service on this earth together… I just expected more.
Yesterday ended on a weird note. One that unfortunately is no longer a surprise to me.
Living on the edge of a twist.
I had a financial meeting. A stressful one, but one that is helping to solve some things. In the midst of legalities and papers and all the insurance stuff that still isn’t settled from John’s care, and my son’s care and the rest of us.
I left the meeting feeling like, ok, we have a direction at least. There’s a plan.
It’s not a perfect place yet, as there are several pieces of data to sort out still, but having a plan is always better than not knowing what the hell you’re doing.
On the way home, it dawned on me that I hadn’t eaten all day. Just wasn’t time. And I was about to pass this little hole-in-the-wall taco place I know of, where the shredded beef tacos are good and the queso even better.
Did I tell you I love tacos?
Literally just about to pass the place. But instead I flip on my signal and turn into the tiny parking lot.
Everything slows down and flows perfectly. I turn, pull into the parking lot and slide right into a perfect parking space that I noted would be easy enough for me to pull out of. Because nothing is more annoying than to park in a too tight spot, in a hole-in-the-wall little parking lot, and not be able to pull back out of either easily.
And the parking spot was waiting for me. Ample room on either side.
I shift into park and then <bonk>. My front wheels slide forward, bounce off the parking barrier and my car rolls backward.
Whut? Hello. Wait…
Did I not put it into park like I thought?
I slam my foot to the brake. I check the dash and see that I’m actually in neutral, though when I look at my shifter, it’s in park.
I’m confused, but braking hard, I rework my shifter and it slides around the center console like butter.
Something is definitely broken. And as usual, everything happens to me on a Friday, around 5pm. W.t.h.
As it turns out, in the instant that I was parking, the shifter cable broke in the neutral position, right as I shifted from drive to park.
In that instant.
Which means it was quite suddenly and permanently stuck in neutral.
Did I tell you my car has nearly 200,000 miles of experience?
When a shifter cable goes, it’s really a matter of luck when/where/how it will happen and in what gear. It can get stuck in drive, park or neutral if the cable breaks.
And I just happened to want a taco. And with a working emergency brake, just happened to park in the perfect spot for a tow truck to back into the parking lot and load my car up. A tow truck they told me would take an hour to get there, but was in fact there in 15 minutes.
Did I tell you I’ve poured over $6000 into keeping my car running since John died?
Yeah. I don’t qualify for loans yet. I gotta keep this baby going. Thankfully a friend thinks they can do the work for me.
But weird stuff keeps happening to it.
And yet, I just happen to be in the right place, safe and at the right time.
Even got a taco.
If you are looking for ways to participate in NaBloPoMo (National Blog Posting Month) this November and meet others as crazy as you for considering this challenge in the midst of Thanksgiving, or if you’re a NaBloPoMo wannabe-supportive-I-eat-blogs-for-breakfast-groupie, here are a few places where people and information are pooling this year:
The challenge known as Nano Poblano has been around a while, hosted by the Cheer Peppers. If you want to join their ranks as a Cheer Pepper and share November posts, that’s done in their Facebook Group and on their website here. I joined them last year, so you’ll see me in the group if you join too. Check out the 2018 NaNoPoblano Team for some great reads from bloggers ranging from seasoned (spicy!) and new. You can find the badge here on the left and a list of blogging resources from the Cheer Peppers here. Official Hashtags/blogtags: #NaBloPoMo #NanoPoblano2018 #TeamTinyPepper. You can even find an active team Instagram page: @teamtinypeppers
Aimie Clouse over at Blissful Lemon hosted a NaBloPoMo challenge list last year. For 2018 she’s proposing a #Create30 challenge, where you create something every day for 30 days, but the form is more flexible. It’s not just geared towards writers. If you found the pressure of NaBloPoMo to be a bit much, but you want to keep your creative juices flowing, then you might want to check out her challenge for November.
A NaBloPoMo Revival Group has been established on Facebook just in time for this year’s challenge as well. As their tag line suggests, it’s a group “for all of us dealing with the withdrawal.” Think I joined? Duh, yup. They’re singing my song. Well, I’ve asked to join anyway. I’m sure they’ll approve my request soon, right? You can join too -> here. There are some other groups listed on Facebook for NaBloPoMo, but some are expired BlogHer groups and honestly this is the only related public FB group that looks like it’s active or cares.
To help with the enabling, I’ve created a NaBloPoMo Roster event listing over on my Aberrant Crochet Facebook page where everyone can share their NaBloPoMo posts. I’ll monitor it, but please feel free to share and chat there if you like. Being on Facebook should make it easy for people to share their posts without crashing anyone’s website. You can find that event page here: https://www.facebook.com/events/305018210336226
See Jane Write is also hosting a November blogging challenge called #BlogLikeCrazy. By all descriptions it seems identical to NaBloPoMo, just much younger and perhaps hosted differently. You can check out that November challenge and any connected communities here: https://seejanewritebham.com/bloglikecrazy.
Several bloggers are taking to social media to share their challenge posts on their own.
You can find all sorts of goodness from them at the following links:
Know More Places?
If you know of more communities and places where the collective heart of NaBloPoMo can be found this year, do share in the comments below! Help our fellow writers and creatives find each other and commune again.
Should make for some really interesting and wonderful food for thought during this month of Thanksgiving. Good luck to all!
Talk to you tomorrow!
Welcome to November y’all!
It’s that time of year when I terrorize myself, my readers, or both with NaBloPoMo. Thirty posts during the traditional 30 days of November each year. To learn more about NaBloPoMo, you can refer to a previous post on it here.
Ever since BlogHer became SheKnows, the official hosting of NaBloPoMo has simply disappeared. No announcement, no death note. And there’s still no sign of acknowledgement, much less renewal of the idea.
It’s as if NaBloPoMo’s been kicked out of it’s home and no one’s admitting it happened.
It’s unfortunately not news. You might remember my anarchist rant about it a bit last year. After you read last year’s post, you’ll understand when I say – I haven’t designed my NaBloPoMo #NoMoNoBlo badge for this year, but I will! 😉
It’s easy to say geez, no one’s officially supporting it and it’s really too hard to do it right now anyway. Give it up. But how can I let a decade of obsession just die without even a eulogy? Especially when it’s not dead yet. In fact, it’s feeling a little better. Might even go for a walk.
I’m not alone. There are a few of us diehard NaBlo nerds out there, along with some newbies who just caught wind and think we’re cool.
Well, we are. I mean. Ya know.
In the last decade of participating, I’ve lost the challenge only once. That one time was last year and for the obvious reason of my husband’s death, if you’ve followed my blog at all, then you know. And I’m grateful if you’ve stuck with me along the way. I can’t promise that I won’t talk about deep things, sad things or even haunting things. I mean, my teenage son was diagnosed with cancer this year, so things definitely still suck, very much. But my soul is not keening with the same rage it was a year ago.
I’m not ok. I’m not. I never will be. Of that I’m certain. I was forced to be reborn and I’m still angry about it. But I’m putting one foot in front of the other, I’m learning and in new ways I’m living John’s favorite teaching motto: Embracing The Suck.
This year will be a challenge to see how NaBloPoMo goes, with an upcoming surgical procedure and a few other irons in the raging fire. But transmutation is never a process of ease, is it? If a caterpillar has to completely dissolve to become a butterfly, then… well…
:: shudder ::
Actually let’s hope it doesn’t come to that.
Look for a list of NaBloPoMo resources in the next post.
On to 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.
June 25th, 2018
by Julia Meek Chambers
All rights reserved.
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
by Julia Meek Chambers
All rights reserved.
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.
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.
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.
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.
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.
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
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.
The mountains are so pretty at sunset.
I gaze into the light.
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.
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
The 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.
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.
In the last couple of weeks, two more of John’s and my friends from college have passed away from cancer, both leaving behind orphans and grieving spouses. That’s something like 11 people now that John and I went to college with, who have passed away from cancer in the last 3 years. All in their 40’s. All from a theology college of less than 2000 students. A college that closed its doors 3 years after I left and no longer exists, except in memory.
Our alumni community as a whole is shocked and grieving, as two of our best fought hard and died. And as my worries since John’s death have multiplied and as our wedding anniversary approaches just before Christmas, I would be lying if I said I am not struggling to survive every day. John and I would have celebrated 23 years together on the 23rd before Christmas. We got married on Christmas weekend to make it easier on our friends around the country to be able to attend. I struggle with a lack of luster and motivation now that I never knew possible, even during John’s fight. A lack of motivation that only comes from loss caused by death. I think perhaps my lack is more significant than expected in part because of how long and hard the fight was. If he’d passed away suddenly, there wouldn’t have been time to hope. He wouldn’t have worked his butt off, hoping doctors would learn as much as possible from him, only to feel like it meant nothing. At least during the fight we had hope. But in the end, I could not save John’s life. And either neither could, or would, God. Now, there is no hope in the physical life. There’s only hope in death. When you’ve lived a life of service and it’s all you know, such terrible losses and traumas are extremely hard to justify, or recover from. If what I do here on this plane does not make a difference, then where is the motivation in this life.
Megan Divine is an expert in extreme grief and loss. You can find her website at https://www.refugeingrief.com. She created a helpful video titled, How Do You Help A Grieving Friend?, which I’ve shared below.
In my struggle to find words, I’ve voiced much of what this video points out. It’s all true. Witnessing is the most powerful thing in the enduring and bearing of grief. Opportunity to speak and experiences to be heard are invaluable.
When half of you dies and life speeds on and everyone else goes back to living, we feel trapped in a madness no one else sees. Because it *is* a madness no one else knows without having experienced it. And the only way out is to give it voice with witnesses.
My experience with the trauma of glioblastoma and John’s death has made me think about my philosophies on parenthood even deeper. When my kids fell and got hurt, I didn’t interpret their pain for them (that must really hurt) nor did I deny it’s existence (aw, you’re not hurt) either. I held them as they cried, let them tell me about it while taking care of anything I knew needed attention and then figured out how to guide them in their emotions based on how they were processing them. I realized that there were times that my children felt trapped, waiting for someone to notice that something was wrong. For someone to stop them and give them the chance to speak. Part of my job was being a detective too and not just expecting that my kids knew they could talk to me, but proving it. They needed to process and they needed to feel safe with me to do it in a healthy and useful way. They needed a chance to evolve carefully emotionally. I didn’t need to tell them how they felt, they needed to voice it out and share with me and sort it verbally. I wanted my kids to know their own voice, so they could find it when they need it most. And I wanted them to know I would listen, in everything, little or big. As a result, my relationship with my kids is stronger, when they and I need it most. I listened to everything, so they’d never doubt if I could be trusted when the big things came up.
Grief is much the same way, just a large-scale experiment. It’s a two-way street, but when the grieved feel their hands being truly held, vs. slapped, denied or even a vacuum of no hand to find at all (silence is the worst), it makes a difference. Witnessing helps most of all. Tell me your story, the real one, not the pretend one. Hasn’t genuine friendship always been about that? Don’t real people, good people do that for each other?
Some really traumatic and horrible things happened that no one wants to acknowledge, not even I want it to be real. And yet if they’re never acknowledged, healing will never truly take place. It helps me when my friends will bring up and speak John’s name, when they acknowledge his fight and that it was hard, not easy, when they ask questions and are willing to hear the truth. It helps when friends let me be genuine and don’t expect me to put on a “good face.” It helps when my friends don’t seem to disappear into a black hole too, when they don’t avoid me so as to not experience my agony. It helps to know my friends are not afraid of me.
Thank you to those who will take the opportunity to learn with me and who will bear to witness.
As many of us come together as a community to support a variety of trials and losses and hard experiences, some very recent and painful in the loss of our alumni friends, and all the cancer fights in our circles, this is the introspection I have today.
This video is hosted on YouTube and is copyright Megan Devine and Refuge in Grief. It is shared here with permission. You can learn more about Megan and her work at https://www.refugeingrief.com.
When it comes to health, never hesitate to get 2nd and 3rd opinions and be willing to travel to get them if you have to. They can be life saving.
My personal opinion is that something is happening to Generation X, biologically. I don’t know what, but too many doctors are treating us like the generations before us. Yet we are facing things at younger ages than our parents and grandparents. And perhaps even more complex things at that.
However, we’re also considered by the system to be the most stubborn and uncooperative generation of parents ever. Because even as adults we challenge the system. We ask questions and we do our own research. We unabashedly disagree with authority figures.
It’s our willingness to challenge the status quo. And to me that is part of our saving grace.
Be a rebel. Make the professionals justify their opinions, prove their theories and prove their authority before you change your future based on their advice.
It may not be perfect, but I always believe in as many good data points as possible before life altering decisions.
And honestly, you want to rule out other possible problems too.
Whatever it is that you’re facing, I pray that all the right people cross your path to help you. ❤️