Category Archives: Grief

April 8, 2020 · 7:58 am

What Hope…?

A couple of days ago, a brain cancer charity let me know that I am one of the top 10 influencers on Twitter for brain cancer. The data measurement is done through a service that serves the healthcare industry only.

I haven’t known how to feel about it. I mainly share studies and medical articles aimed at treatment for Glioblastoma. As is logical.

I used to be one of the top 20 influencers in crochet, but… that’s another story.

As I read the note, I was teary-eyed. My son was in the room when I read the note, and he queried the look on my face.

I don’t know how to feel, and I’m kinda sad, I said. I can barely do what I do. I don’t have any resources, and I can’t create a charity or foundation yet. Brain cancer patients suffer so much for lack of research funding.

And here, I make the rank of top influencer on Twitter.

What hope is there for a cure if *I* make the top 10? Because I have not yet been able to do much. I don’t have time to network or chat. I cannot unleash my full dedication to move mountains, create a foundation and find a way to help. All I can do is share links to studies. I don’t even have the bandwidth to write much about it.

And my son said, “Excuse me? What do you mean, what hope? With everything you’ve been through, even while working as hard as you do, you still manage to help. Something good is born. The willpower to make a difference with literally nothing but your determination to do so. You demonstrate the difference that a single person can make, even with nothing. To be an influence for good in the world. And if that isn’t hope, I don’t know what is.”

A second revelation dawned as I felt the truth in his words.

Even one imperfect voice can matter.

I love that kid of mine. And sometimes, he has me in awe.

—
April 8, 2020
7:10am

1 Comment

Filed under Community, Friends and Family, Glioblastoma, Grief, Random Thoughts, Writing

Tagged as Glioblastoma

November 5, 2019 · 11:34 pm

Voice Of Hope…

It was 20 years ago that I nearly lost my unborn son.

It was in the middle of the night. Four and a half months into my second pregnancy, I woke up in a pool of blood. And it became quickly obvious that I was miscarrying. A call to my doctor confirmed my fears. It was about 3am, so I was told I might as well rest a couple hours before coming in, and that I had a long day ahead of me.

Amidst the various bits of information over the phone, my husband and I were made aware that at this stage of pregnancy, there’s not much that can be done to save an unborn child. That the main concern at this point was my own life and the rate of my bleeding. I was told that I needed to go to the emergency room if my bleeding increased to filling a menstrual pad every two hours. There was blood all over my bed, and I had no idea exactly how much I’d lost. But an hour and a half later, my fresh pad was full. I had no fear for my own life. I didn’t feel weakened by the blood loss yet, but I knew I was going to lose my baby. That I would experience what my own mother and grandmother had gone through before me.

I’m no stranger to trauma, so I did what came naturally to me. I braced for the blow that I knew would come. No fear about it really, just systematically getting ready to get through one more traumatic event that would shape my life as I knew it.

There was no doubt what was happening and there was no reason in my mind to see things any differently. I was going to lose a baby. Women have born this pain for ages. I was not unique in this and there was no reason or time to whine. It was just time to face it and get through. I could fall apart later.

I had accepted that I was indeed losing a child. And for many really good reasons. My mother and grandmother and sister all had before me. And I was readying myself for it. But I had much more reason than most to so simply accept this fate.

Once upon a time, I couldn’t have children. It was absolutely impossible. I was baren. Until I had a full open surgery for endometriosis. In fact, it wasn’t until after the surgery that I even found out. Up until that point, I’d already had to embrace the understanding that women with endometriosis as bad as mine simply have a lot of trouble bringing pregnancies to term. But I was only 23, with the scar tissue damage of someone more than twice my age. It had begun to affect my other organs. I was getting sicker and sicker and something had to be done. Surgery was part of the answer.

However, it wasn’t until they went in that my surgeon discovered that my tubes were completely closed. That meant something quite profound: it was impossible at that point for me to ever conceive.

And so he fixed me.

After the surgery, my surgeon told me that without having me open on the table, there was no way with just a scope they could have seen that my tubes were closed.

I would have tried my entire life to have kids, never knowing why I couldn’t.

That said, the surgery wasn’t 100% successful. I still had problems with endometriosis. But, I lived a much more normal life than before.

So as you can see, I wasn’t surprised to be losing a child.

And as I felt life flow from me, I lay there in the dark preparing myself for the emotional pain ahead, getting my head and heart ready – knowing that after so much already, I was strong enough to endure even this.

And then one of the most powerful things happened and broke me down.

It still makes me bawl to remember it to this day. In fact, my face is a soaking wet mess now as I type.

The experience was that powerful.

Nothing fancy. It was simply this…
I heard a voice. Clear as day.
And it said, “Mommy, don’t give up on me.”

That’s all the voice said.

And it was then that I knew that my son was alive.

I don’t care what you think. I really don’t. Whether you believe my story, or think I’m lying or you think my mind created the experience because I couldn’t accept my reality or whatever.

Because I know better. I know exactly where my head was. And I didn’t even try to hope.

I spent that first day going through all the things they do in a situation like mine. Doctors everywhere consoling me about what I was about to go through.

My bleeding slowed and days would pass. My doctors would continue to check the heartbeat and have me come in to see them every day. They would send me for ultrasounds to evaluate the new hole in my uterus that caused the whole situation. Doctors continued to tell me that I needed to face the reality that I would lose my child. That I was too calm and not processing the situation as I should. This child was not destined to live. That I needed to get a grip and prepare myself for this impending loss.

But I wasn’t phased. I knew.

It would be 9 weeks before we knew for certain that our son was going to make it. Nine weeks of doctors telling us that we should not hope too much because the odds were so far against us. Until finally, they said one day, well… maybe he’ll be OK after all.

I continued to bleed throughout the rest of my pregnancy, though just a trickle. And a month early gave birth to a healthy baby boy.

So there you are, little one. Thank you for making mommy believe in you.

For years it seemed we had an unexplainable connection. Every time I woke up, he was soon awake. Not crying, not upset or fussy, just awake and ready to be with mommy. It was so prevalent that sometimes I’d wake up and lie there quietly and think to him, no-no-no honey please do not wake up. Stay asleep. But he usually woke up anyway. Other times I’d wake up, and sneak a peek at him while he slept, only to find him awake and looking at me. And I’d think to myself, You little stinker! Are you deliberately waking me up? Or are you just being there for mommy? It wasn’t every night, but this unexplainable connection continued well into his school years.

He is 20 now. And 19 months ago we found out he had a very rare form of kidney cancer unheard of in anyone under the age of 20, just 5 months after the death of his father.

I faced the mortality of losing my baby that night, more than 20 years ago. And an unexplainable voice gave me hope. Gave me faith.

I think about that miraculous experience from so long ago and wonder if I might hear it again.

Will a voice in the dark give me hope? Comfort my soul?

And then, my son comes home from his late-night college class.

And while I am working away on yet another project,

he hugs me and whispers,

“I love you, Mom.”

—
11-5-2019
Copyright © 2019 by Julia Meek Chambers, all rights reserved.

3 Comments

Filed under Friends and Family, Grief, Inspiration, New Term Tuesday, Writing

Tagged as hope, motherhood, NDE

October 5, 2019 · 11:10 pm

In Our Court…

There is much goodness in the world,
and I’ve been bathed in it this weekend.
Something I’ve needed.

Life may be brutal and cruel sometimes; it can be hard,
but we dictate the lens through which we choose to see.

We decide where we put our energies,
the relationships we build,
the people we elevate,
the problems we choose to solve,
the ears we choose to lend,
the people we choose to bless,
the actions we choose to take,
the thoughts we allow to become things,
the creations we culminate.

We choose to act or to not.
To nurture or to neglect.

Everything is in our court to do something with.

The positive that we seed into the world.
Or the not.

Even the things we cannot control – we have the freedom,
the choice, and the responsibility of how to handle them.

A free and creative life is not an easy one
but never was such promised.

We were given a variety of tools
and ways to create our reality.
And then given the free will
to go forth and create.

I don’t know what I’m doing
any more than the next person,
but I’m still learning and trying.

I have an ideal I hold in my heart,
and a Creator whom I believe teaches
and guides me.

I still believe that Light
overcomes the Darkness
and that There Is Only Love.

And I appreciate everyone around me
who helps reflect these gifts to me
and fills my cup.

Thank you, friends.

—
October 5th, 2019
6:43pm

Forward…

As a culture, we would benefit from talking about grief and aftermath more. No one should feel ashamed or shunned for grief.

Grief deepens us; it is our vehicle for honoring. Unless we are cheated of it and choked off from it.

It is said that God is with the grieving. The understandable assumption is that, of course, a Loving Creator has compassion and comforts the grieving soul. That when others abandon and neglect, God is steadfast. That even when you think you’ve lost all your friends and everyone stopped caring, God will be there, so count on Him. He will always understand. So much emphasis is placed on the righteousness of caring for widows and orphans in the Bible that it makes sense. God is the Great Comforter.

But I think there’s more to it than that. I believe that grief is a vehicle for God’s work in us. It is painful, but a new spiritual, transformative singularity is begun. As sideliners, we have the opportunity with the grieving souls in our circles: to step away from the energy of that remaking or to be a part of the work being born.

If grief is a sign that God’s Hand is present, then we should hardly turn our back and run from it when it appears in a friend’s life. Perhaps?

As uncomfortable as you may be with my obvious scars, you are mistaken if you think that grief makes me weaker.

Giving voice to these thoughts is much more poetic than it feels in real life since I pretty much feel like I’ve been set on fire and left to slow burn, a hot poker turning my coals. But then I wonder if the caterpillar feels pain as it dissolves into the primordial ooze that will eventually become a butterfly.

I desperately did not want to be reborn again. Not now. Not this way. But I’d be a fool not to recognize that my dissolving cannot help but be a part of reaching whatever my greatest potential is supposed to be. John is an inextricable part of my remaking.

Thing is, I was already a butterfly. I’m not sure what’s next.

Thanks to my friend Shari for sharing with me Nora McInerny’s TED talk about Grief. ❤️

Harbinger…

March is when it all started,
for John and for our son.

Every year for the last 3 years,
March has been a hell harbinger.

As this March’s anniversaries of our life pass,
and our son’s next set of scans approach this week at MD Anderson,
I hope God’s Light will finally show brightly the way through.

Lend us hope, for we are weary.
Lend us love, for we have lost.
Lend me strength, as I cannot falter
and I cannot fail.

—
March 15, 2019
12:33am

Bearing Witness…

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 1200 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.

7 Comments

Filed under Friends and Family, Glioblastoma, Grief

November 29, 2018 · 11:54 pm

Tonight I want to tell you a story about my husband John…

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 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. That those with knowledge should train others. 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 an elevator during a power outage in a snowstorm, 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.

4 Comments

Filed under Glioblastoma, Grief, NaBloPoMo

Tagged as marriage, unconditional love

July 24, 2018 · 12:14 pm

There Is No Spoon…

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

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

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

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

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

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

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

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

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

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

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

And I feel despair.

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

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

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

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

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

Or succumb.

scarcity-drought-spider-web-water-spout

2 Comments

Filed under Grief, Random Thoughts, Widowhood, Writing

Tagged as dreams

June 25, 2018 · 5:44 pm

Understanding Doesn’t Erase It…

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

Understanding alone does not give me freedom.

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

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

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

Grief is a uniquely human wound.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life is in the Overcoming.

And some tasks are more difficult than others.

#ThoughtsForTheDay

grief-sadness-woman-widowhood