Life & Health

Contemplating Chemotherapy: Round 6 – Confusing Chemo/Grief & Coming Close

January 26, 2017

When I set out on this Contemplating Chemotherapy series, initially I thought it would be primarily blogging about my experience with chemo exclusively during this season. As I’ve been writing and looking back, I’ve realized that life is never simple enough to let you deal with one thing at a time. Life is always more complicated than that. I’ve had the interesting position of dealing with the dual difficulties of chemo at a young age and losing a sibling at a young age (and, perhaps, I could add walking through the Dark Night of the Soul to this, but I find myself more comfortable with being in the Dark Night currently). The result, as I look back, is that I’m not always exactly sure which symptoms I’m dealing with at a given moment. I thought they’d each be distinct, but they’re actually very easy to confuse.

Conflating Chemo & Grief

These past few weeks I started attending a local grief group, largely because I still feel like I’ve barely even begun grieving my sister’s death in June – it seems chemo has stunted or interrupted my grief. As I started working my way through the teachings and workbook during the first two weeks, I was surprised to find that much of what I was physically experiencing in light of chemo was described as a common response of grieving a loved one. They talked about how grief can make you feel like you are actually losing your mind – you forget things all the time and can’t think straight. That sounds exactly like chemo brain.

I can’t even remember how many times I’ve gotten up to do something and within a few steps have no earthly idea what it was (heh, see what I did there? Still clever – forgetful, but cleverly so). I’m like Dory. The other day someone I knew brought me a meal on a Friday, and after finishing I wanted to return the very distinct Tupperware container they had brought to me before I forgot. I would see them at church on Sunday, so I washed the container and put it in my car on Saturday night. But when I showed up on Sunday morning, for the life of me, I could not remember whose container it was. I still have absolutely no clue who owns this thing (I guess me, now). So if you brought me a meal and are missing a cherished container, I am so sorry – I have no idea who you are, even though I’m pretty sure we’re friends. I blame the chemo… or maybe the grief. I don’t really know.

And that’s part of the problem – I don’t really know at a given time whether I’m dealing with the emotional/physical side effects of chemo or the emotional/physical side effects of grief – or both. Am I tired and yet can’t sleep at night because chemo has destroyed my internal clock, or because I’m missing Christina? Am I more emotional and crying like a baby over Apple commercials because chemo has messed with my hormones, or am I just more sensitive because Christmas reminds me of my sister? Do I not care what people think of me anymore because chemo has beaten my body and stolen my energy, or does the world just seem off-kilter and careless when people die too soon for anyone’s good.

I don’t know. I imagined that being in this grief group would help me sort these things out. But it hasn’t.

Participant or Pastor

You see, I’m dealing with another dual difficulty in the grief group. The problem is, I can’t decide if I’m in the group as a pastor or as a participant. As a pastor, I’ve led grief groups and taken classes on death and dying and heard or read just about all of the content of the teaching. Also, I’ve got this unfortunate habit of always wondering: “how would I lead this group different?” at nearly any church gathering. And to add to that, the grief group leader has a style that grates against me. She is a licensed counselor, and to my dismay, she tends to try to fix people with platitudes rather than listening to them and let there be tension and silence as they grieve. That really bothers me, especially since I’m an introvert and won’t talk in a group unless you leave at least 10-15 seconds of silence or ask me a direct question. She does neither. There literally has not been 3 seconds of silence before she’ll try to fix someone (and she often interrupts people to finish what they are saying). In leading other groups, this may be helpful, but for grieving people I think it is disastrous and tragic. So as a pastor, my mind is racing and trying to imagine how I might facilitate or interact with other participants in more helpful ways, but as a participant I’ve pretty much just shut down.

In fact, for the first two weeks I literally said nothing until the last 5 minutes of the second week’s meeting, and even then I sort of forced myself to say something in the 1-2 seconds of silence after the counselor solved someone else’s problem – and I immediately regretted saying anything at all. I forget exactly what I shared, but it was something along the lines of wrestling with guilt about me surviving when Christina didn’t. She was quick to jump in after 1-2 seconds of silence (I wasn’t finished sharing, mind you), and explain to me that I shouldn’t feel that way, because it’s not helpful (nevermind the fact that I do feel that way, and I’m not sure how to stop just because someone told me I shouldn’t anymore. Now I feel guilty about feeling guilty. Guilt inception).

She then went on to quickly explain that there are many good things that have come about because of loved one’s deaths, and how we just need to trust that God is good, and then essentially paraphrased Romans 8:28 (without actually mentioning Romans 8:28) to glibly dismiss any notion someone may have about expressing doubts over her theodicy. Whether because of chemo or grief (I’m not sure which), I am unashamed to say that at that moment every bone in my body wanted to yell out: “BULLSHIT!”

I shameless photoshopped this Calvin & Hobbes to change “Boring!” to “Bullshit!” – but it’s what I imagined in my head when I pictured the scenario going down.

I’m sort of sad I didn’t, but maybe I was afraid I’d be forfeiting any ability to be a pastor in the future by doing so. It might have still been worth it. Someone in that room needed to “call bullshit” instead of just nodding in agreement while their hearts were unsatisfied with that answer. Like when you’re playing “BS” (the youth group approved version of the card game “Bullshit!”) and someone lays down “four aces” for the win and everyone knows that’s highly unlikely but is too afraid to risk losing. To be fair, in her defense, I know I’ve given the same trite answer before because my heart wants an easy answer to the problem of suffering (i.e. theodicy). I remember when I read Dostoyevsky’s famous line in Brother’s Karamzov for the first time and wanted to believe it was true. In it, one of his characters is discussing the problem of evil and says:

“I believe like a child that suffering will be healed and made up for, that all the humiliating absurdity of human contradictions will vanish like a pitiful mirage, like the despicable fabrication of the impotent and infinitely small Euclidean mind of man, that in the world’s finale, at the moment of eternal harmony, something so precious will come to pass that it will suffice for all hearts, for the comforting of all resentments, for the atonement of all the crimes of humanity, for all the blood that they’ve shed; that it will make it not only possible to forgive but to justify all that has happened.”

It’s a beautiful line, and I remember posting it to my Facebook wall. It got a lot of likes and “amen”s – until one friend reminded me that a little later that same character essentially says, “I want to believe this, but I can’t.” I knew this, having read the rest of the chapter, but I didn’t want to admit it – so I sort of ignored the comment. Still, it irked me. I so wanted to believe it – that eventually the good God brings about will “make it not only possible to forgive but to justify all [the evil and suffering] that has happened.” But I can’t. I can’t buy that because Christina’s death has had a tremendous impact and witness for Christ that it justifies that she died at 33. I just can’t. I’m happy that my dad’s death has molded me into a different person and pushed me (and countless others) closer to God in many ways, but offer me the chance to have him back for a day in exchange for all the good that’s come and I’d trade it all in a heartbeat without a second thought. I want the good to justify the bad, but right now it doesn’t. I badly want to believe like Sam in Lord of the Rings that “everything sad is going to come untrue” – but he actually asks it as a question to Gandalf: “Is everything sad going to come true?”

Is it?

I certainly hope so. But I also think my friend was right to call “bullshit!” on my post.

Quick Fixes

I fear that we as a Christian culture are too quick to jump to the ending of the story to satisfy our nerves about the middle. We aren’t very good at holding the tension. We want to know while watching a movie: they’re going to be alive at the end, right? And most of the time they are. We like quick fixes. That tension in the movie better resolve in an hour or less, or we’ll be frustrated. And if they don’t give us all the answers by the end, we’ll look them up online later. We know God is going to fix everything, so we sort of start to try and get that business going right now since God seems to be taking his sweet time. We’ll just go ahead and fix a few things while God’s busy. Then we spiritualize and theologize it a bit – “anticipated eschatology,” you know. “You’re dealing with grief? Oh, I have just the thing. Here, let me apply a little Romans 8:28 and you’ll be better in a jiffy!” It’s a good thing that Paul wrote Romans as one of his first letters so people could reference his quick fix to those suffering persecution in the church.

Now, I’m not saying in all of this that I don’t believe in Romans 8:28. I’m also not saying that I don’t think we should ever talk to someone grieving about Romans 8:28, or remind them of other similar truths in the Bible. But I am saying that timing and setting matters. Quick fixes don’t usually last very long. They’re easy, and they’re fast – but they usually end up causing more problems in the long run. Real fixes are often time intensive, hard, and costly. Sometimes I need to hear Romans 8:28 in the midst of my grief – but not within the first two weeks of a thirteen-week program from someone who has barely taken time to listen and know me. You haven’t earned the right to say hard things to me – that takes time.

I recently had a good friend ask me a sort of point blank: “How can I help in your grieving process?” I really appreciated him asking, because in the context he admitted that he hadn’t really experienced grief on his own and was at a loss for what to say or do. Ironically, he asked the question maybe a day after my grief group experience – so I immediately ranted a bit and told him what not to do. But then I had to think for a little bit about what I would suggest. How would Jesus help people in their grieving process?

Ever since I turned 30 in July, I’ve been pondering a lot about the first 30 years of Jesus’ life. Why do we know so little about his early life? Why did Jesus wait 30 years to start his ministry? Did Jesus waste 30 years of his life? Why didn’t he just show up and start fixing things? Isn’t that what we sort of want? Jesus to get on with fixing the world already. I imagine the first century Jews wanted Jesus to burst on in and defeat the Romans and restore Shalom to Israel, righting all the wrongs. Instead, they got a baby. Then, an ordinary Jewish guy for 30 years. Come on, Jesus – get with the program! Let’s start raising the dead and healing the sick and freeing the captives already!

What was Jesus doing?!?

What is Jesus still doing now?

Why isn’t Jesus taking away my grief and fixing my hurts?

Why haven’t the sad things come untrue yet?

Coming Close

I don’t claim to have a full answer to those questions – and I’d hazard that anyone who does needs someone to call “bullshit!” on them and their theodicy. But I think Jesus may give us some clues on how to really help someone who is grieving. Instead of sending a cosmic quick fix for the world’s problems, I’d argue God took a more intimate solution in the incarnation: he came close.

Quick fixes can be applied from a distance. You don’t need to know anything about a person to share Romans 8:28 with them – and we like that. It makes things less messy when you don’t get involved. It takes less time if you don’t have to wade through all the doubts and questions and pain. You can help someone grieving right next to you or across the pond with a short, simple text message. You can even help multiple people at once with the same fix. Think of how efficient our ministry to grieving people can be if you keep your distance! It’s like dropping off relief supply in a crate then going on to the next poor country who needs our help.

But Jesus comes close. The more I think about it, the more I believe that the incarnation was about so much more than Jesus coming “to die for us.” If that was his sole purpose in coming to earth, then he could have at least been a bit more economical or efficient and not wasted 30+ years getting to the cross. But I’m coming to believe that the primary reason for the incarnation was identification. Jesus came to earth as a baby to come close, to show the extent to which he would go to know and love us. Everyone knows what it’s like to be a baby, because we all have been there – not everyone has made it to 33 years old. Because of our sin, the incarnation including dying for us, yes, but that just shows how far he would go to come close. Becoming a baby, living 30 years of ordinary obscurity, and facing death itself was not too far for Jesus, Immannuel, to be “God with us.” With us in the messy. With us in the suffering. With us in the waiting. With us when things aren’t immediately fixed. With us in our grief.

That’s what I told my friend: the best thing for you to do with someone who is grieving is to come close. To be with them. Don’t try to provide a quick fix. Spend time with them. Ask questions. Listen as they share. Don’t be afraid of tension or silence (even more than 15 seconds). It’s OK to acknowledge that it’s hard and painful. Don’t feel like you have to have an answer for everything. Don’t feel like you have to make it better. As Nicholas Wolterstorff has so well said in his book, Lament for a Son:

“[Please]: Don’t say it’s not really so bad. Because it is. Death is awful, demonic. If you think your task as comforter is to tell me that really, all things considered, it’s not so bad, you do not sit with me in my grief but place yourself off in the distance away from me. Over there, you are of no help. What I need to hear from you is that you recognize how painful it is. I need to hear from you that you are with me in my desperation. To comfort me, you have to come close. Come sit beside me on my mourning bench.”

That’s what Jesus did in the incarnation. He came and sat with us. Wolterstorff later says, “Instead of explaining our suffering God shares it.” He enters into our broken world and doesn’t immediately just go about fixing things without really understanding the problem – without understanding us. We aren’t a problem to be fixed, neither is our grief a problem with a standard solution, like a math equation. Each grief is unique even as it is similar – you can’t know that without coming close.

I know it’s scary not being able to come in with a ready-made answer, because I still get scared too. I know the pull to resolve things is strong – I feel it too. I know we can be afraid that if we don’t say something now then we’ll never get the chance to later. But I also believe firmly that God isn’t in a hurry, and he’s willing to take time, to draw near, and to enter into our world and our lives. I have to wonder if Jesus didn’t get scared a time or two, second-guessing if this incarnation plan was a good idea or not. Maybe he had thoughts every once in a while that he should have just come in guns blazing, taking names, dealing out justice, and snapping his fingers to fix any brokenness the minute he saw it. But I’m glad he didn’t. I’m glad he’s patient.

I’m glad Jesus came close.


More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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10 Comments

  • Reply Angie January 26, 2017 at 2:18 pm

    Really good, deep thoughts Jason. Always enjoy your posts!

    • Reply Jason Custer January 26, 2017 at 2:34 pm

      Thanks, Angie.

  • Reply Eric January 26, 2017 at 4:43 pm

    I so want that C&H strip to be real…

    • Reply Jason Custer January 26, 2017 at 11:45 pm

      Me too. Although part of me cringed while editing it since I so respect Bill Waterson and how he never licensed C&H for money because he wanted to maintain the characters. But we all know Calvin would have said “bullshit!” if C&H was still running these days.

  • Reply Laura Loveberry January 27, 2017 at 5:23 am

    Jason,

    Whoa! You pen the grit, the hard, the underneath it all reality. I learned much of where I need to change because I related to the “fixing counselor.” I am a fixer, break- the- silence- keep- it -moving interrupting “expert ” too often. Boom! I am going to work on this for the sake of growth and allow God to prune me…branches pruned back have growth, right? Here is hoping. And another thought, this blog reads life like a get- underneath- the -grief book. When those in the middle of messy read this, those after wading through the messy read this, those attempting to help those deep in the mess read this…they can wrap their minds around how to grow in the pruning. In entirety it is a tough and tender tandem read. As an author, you will surely be subject to criticism by those who don’t go below the surface or realize they, like me are the “fixer”, the Holy Spirit junior assistant telling all how to feel. But I think you should compile this collection at the cost of being critiqued (um…am I “fixing” again in a paragraph of “fixing” change discussion without earning the right? ? Sheesh! I have a ways to go. ) Regardless of my inability to apply my lesson, I think other will along with me, can gain insight into your journey through the valleys of the hardest of hard. The writer flowing out of you, despite “chemo brain” is overflowing with insight in the journey of how we may get through our broken seasons or help other through their wraught road. This blog is a worthy read….I would love to hold as a book in my hands…one I could give away to someone in the mire covered in muck…needing to be understood when we fail to get close as we should.

    All this to say, you keep our prayer life in need of crying out to God. We earnestly are praying and wrapping our minds and hearts around your heart wrenching, soul surviving journey.

    Thank you for each post cathartically crawling us through the mire. This pit of mire where He inclines closer…

    • Reply Jason Custer February 11, 2017 at 10:45 am

      Thanks, Laura! It is very hard for me still to stop my desire to fix things or tell people what they need to do to get better.

  • Reply Jennifer Callaway January 30, 2017 at 2:47 pm

    As always, Jason, I so appreciated your thoughts. I used to be a bit of the Pollyanna type, always the one to say “It’s really not that bad, is it?…” That is until I experienced just how bad it can be. And no, I don’t think there necessarily is always a good reason. It’s just the suffering brought on by the stupid people in the Garden. God will ultimately make everything new, but I do not believe that means everything is in some way good, except in the Romans 8:29 sense (the part of that passage so often overlooked). “For those God foreknew he also predestined to be conformed to the image of his Son.” Is being like Jesus worth it? The Sunday School answer we all know is ‘of course.’ But very few of us would say that in the painful process. Thank you again for sharing your pain. I pray that as the words go onto the page the pain eases just a bit along with them. Blessings,

  • Reply Jason Custer February 11, 2017 at 10:47 am

    Thanks, Jennifer. It is oddly healing in a strange way to write about everything and put it out for others to read.

  • Reply Donna Cunningham March 16, 2017 at 3:23 pm

    You have a different perspective in the class because of your theology and background so it is easier for you to critique the class facilitator. I am glad you have continued to go because I have enjoyed getting to know you.

    • Reply Jason Custer March 16, 2017 at 11:05 pm

      Thanks, Donna. Just so you know, the grief class I was talking about in this post was a different one than the one we’re both currently going through right now, with a different facilitator. I’ve enjoyed the current class.

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