Ok, so I’m no Pollyanna.
This doesn’t mean I have no hope. Hope really does spring eternal, even if it’s just a tiny kind of stunted looking sprout in the garden of yikes we tend here. But hope does live.
FALSE hope I have a huge problem with. False hope is like fake flowers in my garden.
This kind of builds on my last post (if I asked you to read this blog, it was for my Ode to Oncologists, please do read that…and feel free to read on, if you can stomach it). I suppose I should insert a GIANT OPINIONS ABOUT TO COME FORTH! Warning here….
A ginormous part of the reason we so trust our doctor is because she has never given us false hope. When things have been dire, she tells us. You have to be educated about the enemy you fight, and if things are grim I need to know so my spouse and I can choose the right weapons to fight. We know that the statistics of success with any chemo protocol are garbage. We know this, and no one ever promises us otherwise.
That said, we do have hope, because within our community we know kids who have found stability. For 5 years my second born WAS one of those kids. I have to hope we can get back there again. Today a spot of headache and dizziness have made that hope slippery…sigh.
Understandably, any parent in the spot we are in would LOVE promises of sunshine and wellness and sparkly rainbows. All of us would LOVE the magic bullet, the thing that will make all of this suffering go away. Heck, that’s why so many parents and family and friends of people battling awful illnesses work so hard for research dollars.
(As a side note, there is a reason most anti-cancer/anti-NF efforts are geared towards treatments and less towards prevention. Imagine a house is on fire. Smoke! Flames! Alarms! Your first efforts of course are to rescue anyone inside and put out the blaze. While those flames are burning you may want to hold off on studying why the fire started and how to prevent future fires. You quench the flames FIRST. That is why research tends to have that treatment bias. As a parent searching for an extinguisher, I appreciate this. It’s really NOT a pharmaceutical conspiracy, I promise. There is a reason. ).
Unfotunately, there is no magic bullet. (except the one above)
Yes, we can do things to be healthier, eat right, exercise, brush our teeth, floss, wear a seatbelt, wear sunblock, get enough sleep, find spiritual and emotional support. We can and should do these things…
But there is no magic recipe for healing. Sometimes it happens, sometimes it doesn’t. Some illnesses are more curable than others. That’s just the way it is.
From a religious standpoint (my lens here is both secular and religious), God promises us that He will give us the desires of our heart, He says He has a future full of hope for us…but He doesn’t exactly specify WHEN this stuff is going to happen. Religious texts (Bible and otherwise) are full of stories of people who generally had a really rotten time of things. The best, most faithful people got smote. Life happens, even to good people. Some of their stories truly don’t end well…but we believe that ultimately there is more beyond this life.
As friend to a lot of people who have lost their children, this hope is so critical, this hope that we will meet again somewhere where brain tumors and NF and cancer are not even memories.
God promises He will be with us, even mid-smitefest, even if it doesn’t feel like He is. Sometimes that means stable scans and a break from chemo. Sometimes that means having the chutzpah to go into chemo with a smile and an awful animal joke for your oncologist.
And my point is?
God does NOT promise that if we eat a certain way, or exercise a certain way, or buy a certain program, that we will be “doing His will!” and thus be preserved from illness. He does not say this. Ever.
Even if good looking and charismatic people say that He says this…He doesn’t. Within a variety of faith traditions, that’s pretty easy to check. He doesn’t.
Promising people cancer immunity if they cut out sugar and avoid traditional medicine and buy a particular (expensive) program of wellness because That is What God Wants…this makes me insane. It’s not true, and for people desperately wanting that magic bullet, people wanting to be faithful to a Judeo-Christian understanding of the world, this goes beyond marketing into cruel manipulation. Saying people who choose traditional medicine and leave the program die…unconscionable.
“Claiming” healing as part of a program may make you feel good, but I just have not EVER seen God be like “Oh! Phew! You loudly and publically CLAIMED healing, THAT will make all the difference, those quiet prayers were just too blasé. “ Actually, I can think of at least one or two times where God was like “hey, don’t make a big show of praying so people are like, Whoa, that is some hard core praying there.” “Claiming” healing should not become a commercial for a product or program. That is exploitive of the person who is sick, and again, just cruel. Really, really cruel.
And I should say, we have gone to healing services with my G, one with a very famous priest who has a healing ministry. I was so leery…and we got there, and he was the most unassuming man I’ve ever met. “I pray, and sometimes God sends healing,” he explained. No conditions, no “you have to DO THIS”, no guilt or rules or anything. Just a simple faith that hey, asking God for healing never hurts. And he took about 30 seconds and said a simple prayer with my G, quietly, so only we could hear, just asking for healing. And you know what? 6 months later she was sicker than she had ever been, but honestly, MOMMA had been healed of guilt and anger and hurt. I was able to help G, and cling to hope because that quiet, humble prayer so touched MY heart. Didn’t see THAT coming…
I don’t think God is looking for any kind of endorsement deal. He doesn’t need extra publicity or residuals from having His name appear on “wellness” programs.
We all just do the best we can. No one should feel guilty for doing the best they can. No parent of a kid with cancer or a brain tumor knowingly or unknowingly GAVE their child this illness. Implying that choices create cancer “95% of the time” holds a particularly vile form of guilt for parents who are already suffering. Using that guilt to sell something…
I think I have said my piece. My heart is so full every single day for our friends battling, for our friends mourning their lost children. My heart breaks when I think too much about the moment we are in right now. My heart shudders when I fish out the separate calendar I have (once again) just for medical stuff, or when my kid tells me her head feels “funny”.
That’s why I have to say this. And because the claims I mention were made very publically by someone who knows my children pretty closely, I do take it personally. How can you know us and say these things? What cognitive disconnect exists that allows these ideas to ferment in your mind?
But now I have said my piece, and I have to let it go for now, even though I know, despite my efforts, these words will likely never get where they need to go. Now I will go back to silliness, and I will write down the ill-advised tattoos thing in my head and Zen and the Art of Sparkly Rainbows. No more heavy stuff for a while. Actually, we have some very exciting happy stuff happening in 2 weeks... : ) : )
Thank you to anyone who read this, and can hear it. I appreciate that. And I do pray for our friends every day…that God bring healing, and if not healing then grace for the moment.
You are all much in my heart.