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.
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March 8th, 2018
8:15am
by Julia Meek Chambers
All rights reserved.
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Julia, You are an inspiration!
Thank you Liz, I don’t really feel like one. But I’m glad if what I share helps anyone. ❤❤
Do only that which you feel you can do and nothing more.
If that which you can do changes from day to day—even moment to moment or breath to breath for that matter, then so be it.
Do not let others dictate to you what you can or should be doing. Don’t even dictate it to yourself. Time will come when you can do, even must or should do, for your own sanity and sense of self if nothing else. A time to begin to re-enter the world again. That time is not now.
I pray that there is someone in your tribe that can stand by you when needed; one who can receive that unspeakable mix of emotions when you are ready to express them, or they simply boil over and come out anyway.One who can see you in all your rawness and not fear it nor even attempt to rectify it, since that would be impossible anyway. But one who will stand with you nonetheless, waiting patiently, and will be the rock that you can cling to, shelter beneath, and eventually be the handhold you can use to begin to climb out of the maelstrom.
Thank you for such a beautiful and insightful prayer Paula. I’m trying to pace myself, but you know… sometimes Life does not allow you rest even when you need it. Even when you demand it.
My heart aches for you and your family. I send hope and peace and healing, and prayers for an easy surgery and a benign designation. Thank you for your words, and may you find the haven and audience you need to heal.
Thank you Kathleen, I appreciate your words of encouragement. ❤❤Pathology on his tumor did not turn out to be benign, but the situation *is* a better case scenario. Still need some data bites before we can really sigh in relief, but we did catch it still encapsulated. And the surgeon was able to save 75% of his kidney. Very good news. The not so good news is that it grew up to a full cm in just 6 weeks. Which doesn’t seem to jive with the “non-aggressive cancer” pathology identification that came back. So we’re still waiting on some answers….
Oh, Julia. Not another traumatic event. I’m praying the surgery wet well, and your son is on his way to complete recovery. No, none of us are trained for this. I know people bear it. I’ve seen them. One breath at a time.
Thanks Amy, he’s finally recovering well. We had some scares in the hospital. Turns out he inherited my allergy to narcotics and sensitivity to medications in general. He was in recovery for hours thanks to systemic hives and he continued to hive frequently off and on every day for 5 days. It’s tapered off and we’ve seen the systemic hives only once since we got home. He’s sleeping a lot, and is weaker and more tired than he expected. He is also disappointed that playing his drum set is considered too strenuous right now. No drums for 6 weeks! But overall, physically he’s doing better. Two abdominal surgeries in 6 weeks is a lot and he has a lot of inflammation. And they couldn’t use a robot, so his incision is much larger too. Just a lot of worries about the pathology at the moment until we understand more. The surgeon was able to save 75% of his kidney, it was stage 1b and the tumor was encapsulated. These are good things. However this cancer type can run in families and if it has a genetic connection, can recur again and again. The rate of growth in just the 6 weeks since we found it is alarming though. It measured 1.1 – 1.5 cm larger at surgery than it did 6 weeks before at the time of his appendectomy, with a 0.5 margin of error. Yet the pathology came back as a “non-aggressive cancer” type. So the two facts seem to conflict. And he still has none of the other symptoms typically associated with kidney cancer, not to mention it’s so incredibly rare for an 18 year old to get kidney cancer, much less one with no body fat. Especially with our dietary habits. They’ve been asking me things like whether or not I know if our family’s been exposed to radiation. Of course I’m not aware of any.
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