Eight years ago, I was working for a local video production company assigned with the task of telling the stories of parents who lived through the unimaginable pain of having a baby die in the Neonatal Intensive Care Unit, or NICU, at St. Louis Children's Hospital. What made this such an arduous feat was the fact that both my wife, Stephanie, and my editor, Megan, were pregnant at the time. It was a surreal experience in the editing room every day. Meghan and I would put together a series of shots, and then have to excuse ourselves at various times to cry.
And I have to tell you, it turned me into a raving lunatic at home with my poor wife. "Can I do this? Let me do this! Don't worry about lifting that, I'll get it! Can I get you anything? Do you have any cravings? Would you like a brownie? How's everything feeling down there? Do you need a blanket? Would you like to watch a movie? Would you like me to make a movie for you to watch? Are you out of prenatal vitamins? Do you want me to..."
"Okay, never mind then."
I was saying all of the wrong things, and I didn't even realize it. In fact, it took me re-watching an interview we did for the project to finally see the light. We had interviewed this couple who told the harrowing story of how their baby died, and how the only time they were able to hold him without tubes and wires was in the few minutes after he had actually passed. They washed his hair and dressed him for the last time.
I still think of that moment literally every single time I wash either of our boys hair while taking a bath or shower. A few times I've even had to excuse myself right in the middle of lathering them up.
But the next thing that this lady said really shook me to my core: "And then people would say to me 'At least he's not in pain,' or 'At least he's in a better place.' No...a better place is in my arms. There is no 'at least.'"
The last blog I wrote dealt with people who get mad at God during cancer. Well I didn't quite realize the crap-storm that would follow from a fair amount of people. One that really struck me came from a woman who read our blog through the Stupid Cancer Facebook page. In a nutshell, it read something like, "I hate it when people say stuff like 'God doesn't give you a cross more than you can bear.'"
And all of a sudden, "There is no 'at least'" came flooding back. With that in mind, I want to share a few thoughts with those of us who are either friends or loved ones of cancer patients or caregivers.
For starters, we know that you love us, care for us, and want to comfort us, and we love and adore you for it, and are extremely grateful for your compassion and kindness. With that said, we will internally, and sometimes externally, tear you a new anus for saying any of the following platitudes.
1. "This may be hard to hear, but..." Going through cancer, life is beyond hard enough. Unless you've gone through it, it's incredibly hard to empathize with its level of "suck." Don't make it any harder. Which leads directly into...
2. "I can relate." Unless you have gone through chemo, radiation, and a ball (or other part) removal, it is almost impossible to be able to physically relate. Emotionally, maybe. Physically, meh. The odd thing is that people that have gone through this never, ever say "I can relate," or "I know what you're going through," and the reason is simple: if they do relate, story swapping starts. "You lost a breast and part of your jaw? That is awful. I lost my lower leg and now my heel is my knee. And don't get me started on those damn Pet Scans. Catheter, my ass!"
3. "This is part of God's bigger plan." If you want a cancer patient who loves God to start hating God, say this to said cancer patient. If he or she is not mad at God before this sentence is uttered, he or she is pretty pissed off now. "Wait, you think God did this? What a jacksauce!" Oh, and for an ever higher state of anger, as I said earlier:
4. "God doesn't give you a cross you can't bear." It takes hindsight to understand the higher purpose if that is what you are looking for. You don't stand in a burning building or fend off sharks while stranded in the ocean and think, "Well, this is all happening for a reason." You extricate yourself from the situation, and then you reflect...if you're still alive, that is.
And I will say this: at some point during the battle, God-fearing or not, we all have a cross more than we can bear. It's only when we have it that our limits are tested, broken, redefined and rebuilt. Every single one of us have, at some point, given in. I recently talked with an absolute powerhouse named Dr. Sheri Phillips, who is the national spokesperson for the Komen "3 Day Walk for the Cure." She told me about one night while battling breast cancer, she started feeling massive tightness in her chest. Instead of calling an ambulance thinking she was having a heart attack, she went to sleep, thinking "If this is how I'm going out, so be it, because God, I'm just so tired of fighting." And when she woke up, her limits were tested... broken... redefined... and would eventually be rebuilt.
To cancer patients and caregivers, you should not get mad when you hear these words coming from anyone: "I'm sorry you're going through this."
Lots of us try to throw those words back at the folks who say it. "Why are you sorry?" The reason people say it is simple: it's the right thing to say. It doesn't matter if it is reactionary. It's what should be said. It's not pity; it's love, affection, concern, or at a minimum...being polite.
The argument is "I'm sorry" is used as often as "Please" and "Thank you," and people have said, "They're just throw-away words." Well the next time you find them as "throw-away," have someone refuse to keep a door open for you at the mall, or hand someone a salt-shaker at the table and not receive a "thank you." Or my personal vexation...let someone into your lane, and then have them not wave.
"I'm sorry" is a polite way of saying "I don't know what you're going through because I can't quite relate, but it hurts my heart to know that you're suffering."
"I'm sorry" is good for casual friends, acquaintances, and even strangers. But if you are utterly close to someone battling, there is one sure thing you can say to make them feel even a shred of a whiff of a modicum of better:
"I will be here for you in any way you need, in any way I can."
And that's it. Period. Finito Mussolini.
So now that you know this, it's important for patients and caregivers to not be afraid to gently tell your loved ones where they can stick their platitudes, while also expressing gratitude for the fact that they want to make you feel better, even if for only a second or two. It is up to us to teach them, no matter how hard it might be to say.
Because in the end, by you being the a-hole, you're helping them to not come off like an a-hole. And no one likes being the a-hole...not even the a-hole.
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