There’s a really great article from the LA Times circling the social media realm. Called “How Not to Say the Wrong Thing”, it details an exercise that was designed by a woman with breast cancer after her best friend barged into her hospital room and told her that “this wasn’t all about her” — that she should forgo her own needs to comfort her friend’s concern about her.
The exercise is great. The gist — You put the person who’s ill at the center of a target, and they get only positive attention, empathy and help aimed at them. You place others close to them on the circles of the target near them. Then, wherever you fit, you’re only allowed to vent and seek support about any stress their illness is causing you outward, away from the bullseye, to people who have less to deal with it. You send only positive thoughts and support inward, towards the center. It’s good stuff.
And I can’t get it out of my head since reading it…
Earlier this year I had surgery to remove a softball-sized cyst from my left side. During the surgery, something went wrong, and whether it was because this cyst was attached to my bowel, or whether it was due to “illius” (a condition where your bowel never wakes up from anesthesia), my bowel was paralyzed, I was unable to go to the bathroom and have been in an intense amount of pain, since (finally easing, thank goodness).
This exploded into a whole realm of problems, setting off a series of autoimmune and other issues that have lingered under the surface for years, all free to run rampant due to my weakened immune system. I have Celiac disease. Hashimoto Thyroiditis, killing my thyroid. I have terrible blood immune allergy reactions to 34 foods that I’m not allowed to eat: egg, dairy, garlic, tomato, corn, soy, yeast, vanilla, turkey, sugar, etc. The most common things, found in almost everything.
I’ve lost 17 pounds I never really had to lose. I have gastritis and pancreatitis on top of it all. Health insurance won’t cover a lot of my treatment. Life has been what I believe I can fairly call… a challenge.
Part of that challenge — in fact the majority of that challenge, for me, has been dealing with people. I can honestly say that I am a whole lot less angry that this has happened to me than I am about the things people say and the ways people behave. The narcissism the author experienced above — it’s become a disease:
1) “It’s about time you stop fighting — it’s not a choice you make — whether you stay sick or not. You should probably think seriously about getting on disability.”
This is probably the.worst. thing you can say to someone you experience fighting for their lives. They’re looking for any reason to believe that things are going to get better. They’re looking for support. They’re terrified. They’re looking for people to carry some of the load and help them through the fight. Not tell them they’re probably going to lose.
Never, ever tell them to stop fighting. Never.
This was said to me by someone looking to advance their own agenda, focusing on career and business over… being human. Unfortunately, this attitude has become a more prevalent one in the world.
This makes me angry to this day. Yet I also have gratitude for that moment — Because it just made me fight even harder.
2) “If I had to live like you I’d kill myself. I’d just let that be the end”.
This statement or ones like it have been said to me by more than one person. This usually comes after a list they recite to me of all the things I’ll never eat again — because people seem to think this is super helpful, as well. Pizza. I’ll never have pizza again. That’s probably the worst. Followed by the sad thought of how I’ll never have a birthday cake. Chocolate chip cookies. The cookies rank up there with pizza (I suffered a two day ache for one bite weeks ago, just to taste them, again…).
But you know what? My boyfriend has figured out how to make me blueberry pancakes. A chef made me a most glorious steak this weekend, covered in whipped goat cheese and potatoes. When I get down because of the pain of cravings — and they have become, literally, painful — I can’t help but be angry at myself for my own self-centeredness. There are people in the world who starve. Who have only rice their whole lives long. Oh, poor me that I have to eat delicious steak and potatoes. It’s so sad that I can’t eat out very often. Tell that to a kid who doesn’t even have clean drinking water.
There are people who have it a lot worse than nearly any situation you’re likely to encounter. Please consider these people before you make harsh statements like preferring death to another’s existence. Consider how terrible it sounds to the person living that life and struggling to feel okay about it. That’s not exactly easy to get over.
3)“Well, can’t you just call ahead and fix things so that I can do what I want to do?”
I’ve said more than once, and I mean it. If someone could fix me for just one night so that I could eat pizza and ice cream, I’d pay them $10,000 for the experience. I mean it. $10,000. I have visions of just plopping scoops of chocolate chip ice cream right on top of the pizza and eating it all together. I’d have no shame.
Given that offer, um… no. I can not get Chili’s to somehow suction the marinade from their pre-marinated steaks. There is no such thing as salsa without tomatoes — no such thing as pizza without cheese, tomatoes and everything that goes into crust.
But yes – For one night, for that one meal you who choose to dine with me, you are going to have to go somewhere that can accommodate what I can eat. For one meal you’re going to have to sacrifice exactly what you want in favor of… other delicious food from a vast menu. And I feel really terrible about that… That I will sit and watch you eat cheesy, delicious pasta while I have a salad. Spending my whole life unable to have those things you’re craving right now. That must be so hard for you.
I’m begging people reading this… begging people. Can we have a revival of conscientiousness? Could you maybe not hand a cake over to someone who can’t eat it, laughing at how many things your ill friend can’t have? Could you not be “so disappointed” that the meeting you scheduled at a pizzeria, where they can eat nothing, has to be moved? Could you get over what an “inconvenience” the other’s illness is to you, in favor of being grateful you get a break from the restrictions, and you don’t have to suffer?
A friend of mine from high school posted about her students the other day — She’d forgotten that one of the kids in her class was allergic to corn, and served popcorn as a snack. One of the comments beneath this post read, “Allergic to popcorn? That’s not a real thing. What would you do at the movies!?”
Well, it’s a real thing. And I eat a fruit strip or apple at the movies. And it’s really difficult — the butter smell is intoxicating.
Allergies and illness are a real thing. Even if you don’t experience them directly… stop to imagine what it would be like if you did. Stop to realize that there is a real place in this world for empathy and awareness.
And please… think about what you say. Build people up… help them fight. Don’t break them.