Posted on by issuesandtissuesblog

How to talk to people (us) about cancer

I’ve been on the receiving end of a lot of sympathy lately. I think for some this is a totally genuine part of being my friend. People are really stepping up to care for my family and it’s kind of remarkable to learn how loved you are.

For some, I think this is finally the chance to prove they can care for me, which is not something Andy or I typically need. For some, it kind of goes into sympathy overdrive and turns out to be more about caring for them as they try and care for me.

So, I thought a little guide about how to talk to people in crisis might be helpful. That way when you see us, you won’t inadvertently cause us to caretake you and you could actually alleviate some of the discomfort right now.

First, this article is great about the whole “who has a right to complain in this situation.” I highly recommend a quick skim, but this is the key take away in relation to the graphic below: “The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring. Everyone else can say those things too, but only to people in larger rings.”

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So, if you aren’t Andy, you don’t get to say “I don’t want to hear about something.” If he wants to tell you about the scary prognosis conversation he had to have with a doctor or about the really awful symptoms he’s experiencing, suck it the fuck up and listen. And then go find someone in an outer ring to dump to.

I’m going to go out on a limb here and say next to Andy is me. So, yeah, you have to listen to me, too. Ronan would be there, too, if he could talk.

After that I don’t really know how it breaks down. My hunch is most people can accurately place their distance on the map, but I know there are a few people who could prove to not really know how close of a relationship they have to me and Andy and could inappropriately cause us to caretake them.

(I’m not speaking about anyone specific here, but if you’re afraid it’s you…it may be something worth examining.)

So, first, do a gut check about if you are providing more comfort or dumping. Comfort in only. Aka, we get ALL the comfort. And Andy gets even more than me.

So what does that look like concretely?

When you ask “How are you doing?” do it in a way that doesn’t already assume we’re in a bad place. I mean, we are, but ask it neutrally, not it an all “awwww, how are yoooou??” followed by sad puppy eyes. That’s not comforting.

Also, don’t even ask this question if you aren’t prepared for an honest answer.

When we give you an honest answer, don’t just respond with “I’m sorry” or “That sucks.” Yeah, no shit. This is where being curious is good approach. Try on asking why something is the way it is, how something works, or, if we have gotten past the initial venting, ask how we can solve the problem and help us brainstorm ideas or offer up something.

When we tell you about something we are scared about, don’t say bullshit things like “Well, the chemo is going to work, I just know it.” No you fucking don’t, that’s not comforting and negates all the feelings we’re having about it. If you can’t manage going on the ride with us, then just keep your distance for a bit or, better yet, get some goddamn therapy.

Try asking about something good. You could ask us both about Ronan and we could talk for an hour about how wonderful our kiddo is. (He can sign “water”! He knows how to meow and bark! He walks around the house saying “good girl” to no one in particular! He loves anything related to transportation! He loves to climb!)

Tell us something that is going right for you and ask if we have any victories. I’m the more ennui filled one of us so I likely we be like Glum and say “nah,” but I can figure it out eventually. Today already I got to have scrambled eggs made with bacon fat and that was delicious. I’m writing this from the coworking space I’m a part of in West Seattle and that is also a good thing.

Talk about something unrelated to cancer. Tell us about a really good book, movie, podcast, etc. There are about 800 pop culture things we can talk about these days from Star Wars to…other stuff. I don’t know, but I bet you do. Sometimes celebrity gossip and nerding out about something is exactly what we need. I’m getting Andy into the podcast My Favorite Murder so if you’re a murderino, welcome him into the fold. You can talk to Andy about The Republicans and he will go on forever. Ask me for help with a work dynamic and I could go on forever. We are problem solvers so let us solve some of your problems.

Finally, if we cry, let us cry. No need to hug us, pat us on the back, or put tissues in our hands. Just put a box near us and then just sit and wait. We’ll tell you more and having simple human presence is usually all a person needs to get through the waves of grief that come on. A glass of water can help, too.

Finally finally, you can always offer to help. Come over and play with us so I can do crazy things like clean the kitchen. Sign up for a meal or offer to run an errand for us. Or, if you aren’t local, send us cards, nothing has to be in them, or ecards, or text us funny memes. Regular infusions of reminders that we are loved in this way are so, so helpful. The grief causes us to feel alone sometimes, even when we aren’t, so having this is concrete proof we are not alone.

And if all else fails, just ask if something is helping or hurting. Andy and I are pretty straightforward about how we feel about something and if what you’re providing isn’t ultimately helpful, we’ll tell you, but we’ll “Yes, and…” you and build on what you’ve already started. We’ve managed to retain some compassion during all of this.

Ok, so that’s my little guide about how to be a good friend in this time. I imagine it might be helpful in other moments of acute crisis like having a new baby, illness or injury, or…other stuff? Again, brain=goo.

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Where does intersectional feminism fit in with a cancer family?

Before Andy got a touch of the cancer, we were a family that was actively working to dismantle the patriarchy and systems of oppression. I wrote on my blog for my consulting business about identifying internal racial biases. We talked regularly about feminism, intersectionality, and how to be more aware of privilege.

We were a good liberal family. Living a joyful life and pushing ourselves outside of our comfort zones with regularity.

Andy was largely on the receiving end of education. He embraced the concept of centering marginalized voices and even when it was uncomfortable or required unlearning, he would work hard to be an active participant in this crusade so Ronan would have a slightly less oppressive worldview.

Then…well, you know.

A week or so after Andy had come home, I found myself wiped from all the work of caregiving. My head was constantly buzzing with lists, people, tasks, baby, ideas, tracking, baby, work, chores, Andy, cancer, grief, cancer, Andy, cancer, cancer, cancer, and I had a tiny meltdown. One of many I have and will have. I’ve already lost track of them.

After I had a good cry, I went on to Facebook to check in with the world and was presented with another really good article about mental load. One of the comments struck me: “What makes people think we are genetically predisposed to make dentist appointments is beyond me.”

And I got a little uppity.

YES. I HAVE SO MUCH ON MY PLATE RIGHT NOW! I AM THE ONE MAKING ALL THE APPOINTMENTS IN ALL OF THIS! AND WRITING GROCERY LISTS! AND MANAGING CHILDCARE! AND I HAVEN’T GOTTEN A DECENT NIGHT’S SLEEP IN WEEKS! WHY CAN’T ANDY DO SOMETH…oh, wait. Right. 

See, normally, I would have gone to him and said, Hey, it’s all too much right now. I need some help. And he would have totally picked up slack somewhere, taken on dishes, vacuuming, childcare, something.

But this time, I couldn’t offload this to him.

I had help during the day. Ronan went to my in-laws or to friends, or we had someone come over and entertain him while I did chores or paid bills. But, it was amazing how the workload more than doubled because not only was I picking up the tasks that Andy couldn’t do, but I was also managing grief around this whole situation, which is a motherfucker.

Soon after I had a talk with Andy.

“I’m overwhelmed and I don’t know where talking about mental load and feminism fits into our lives anymore.”

In my head I pictured Maslow’s Hierarchy of Needs and how “Dismantling the Patriarchy” is probably higher up on the pyramid. We were solidly still in the bottom, trying to recuperate physiologically.

Now the immediate crisis is at a low point, though we know it’s going to keep coming back as we continue on this path. But, I still wrestle with how to talk to my husband, who is fighting Stage IV cancer, about intersectional feminism. It’s obviously a huge value to us, but where do you fit it in when most days we can both barely get out of bed? (I’m writing this from my bed.)

We settled on a compromise of sorts: Bring it up and be aware of impact. We are a partnership and me internalizing all the bullshit in hopes of relieving some of the load from him undercuts the whole “marriage” thing. Marriage is not 50/50. Sometimes it’s 80/20 or 20/80. The least he can do is listen to me complain even if he can’t actually do anything. And truthfully the complaining helps.

And me taking on all the work of managing appointments and childcare and household management and not talking about the impact on me to my partner, well that just perpetuates the idea that women are somehow better at this than men and therefore men don’t have to try to do any of that stuff because biology.

I had a funny Facebook interaction a few week ago where someone (a dude) tried to tell me that men were better at compartmentalizing than women. This is one of the most thoroughly debunked myths of “biology” that turned out to be cultural training. But, if we needed personal anecdotes, my ability to compartmentalize right now has never been better. My crazy gets put into a box and is locked up and then the key goes in my butt and the box is buried deep.

(There is always time for a Pitch Perfect clip.)

Back to the matter at hand: Biology or culture isn’t so much what we talk about these days, mostly we have a very active, ongoing conversation about how to relieve the load form each other within the limitations we currently have. We both prioritize Ronan first and then each other (though I think we’re getting better at actually prioritizing ourselves). By knowing that we have clear priorities (happy, healthy, adaptable kid first), we can address the rest because the way how we are living our lives in this current paradigm is inherently about non-oppression. Because at the root is compassion, empathy, and love.

We don’t have the energy for broader impact. We don’t have the ability to be a more active ally than being a friend and taking care of ourselves so we can return to the fight. But, we can continue to do the work inside our own home and in our own hearts of having an equitable marriage in hopes that some day (soon?) we can be soldiers on the front lines again.

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Less dark, still a little twisty

If you’re not keeping up on our CaringBridge account, we recently had an appointment with a surgical oncologist that was very positive. Given the uptick in the mood in the Willhelm household, I wanted to check in with a slightly less dire/macabre/ennui filled post.

It’s still very hard right now.

As I write this, Ronan is playing with our friend, Sarah, while Andy chills on the couch. I find that this space from the day-to-day caregiving of Ronan is such a relief AND I feel incredibly guilty about that.

Up to this point I hadn’t experienced a ton of mommy guilt. I was with him almost every waking minute of his day. He was surrounded by a lot of good, loving caregivers, and we still got time together in the evening for just the two of us. I was clearly fitting all the societal standards as a “good mom” balancing time with my son and time away from my son, a precarious balance that seems to be undefinable except when we see a mom not managing it. And then the internet has a lot to say.

But now, he’s cared for by a veritable battalion of people. Everyone adores him. No one signs up if they’re not into kids. He is proving to be happy, adaptable…interesting, even to some.

But I worry as this is the big initial push for Andy and his care, am I doing harm somehow to him?

Of course, my higher self who can get on the balcony says, “Absolutely not.” Even now his laughter comes easily with everyone who he is with, the ultimate sign to me that he is fine.

But now that the pressure of Andy’s immediate care is letting up, I have mental space again to start to stress about stuff. And first up gets to be my son.

I know I’m not a bad mom. By all other measures, I’m a fucking great mom. But if you know anyone who is a mom, or are a mom yourself, you know the weird standards that are put on us by, largely, white older Christian Republicans for whom family is defined by how it appeared in the 1950s, aka the height of oppression in the post-war age. We’re fighting back against this, but since the internet is full of trolls and people who don’t have to hide their judgment or civility, we still hear regularly about how we’re not doing motherhood right.

For the most part, I can remain immune to this pressure, but my defenses are down and instead of brushing off the bullshit, I find my inner voice that is concerned about single parenthood internalizes this judgment. If I can’t have Andy, can I still handle raising a boy in this time? I don’t know, says the voice, you certainly abdicate your motherhood to a lot of people.

Smarter, more compassionate parts of me look at it as expanding the motherhood circle, really embracing the whole “it takes a village” especially when mom is occupied with, like, keeping Papa alive. And my village is full of wildly capable, extremely loving people. So Ronan’s in good hands. Probably more qualified than me in some cases.

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I’m also wildly overwhelmed with projects. I have several full time jobs I want to apply to, I have a lot of writing I need to do for one of the consulting firms I’m in the dugout for, and I’m still trying to manage a household and a business. It’s just a lot and it feels like a lot of things on my to-do list truly can’t be put off. But when I sit down to work I just want to write about Andy, or about my experience, or just read Facebook.

Again, smarter, more compassionate parts of me are able to see that I’m battling depression, fatigue, overwhelm, and the desire to do self-care first and work second is normal. But I also have a part born out of the trauma of a country that judges a person’s worth on their work contribution and thinks that I’m just not bootstrapping enough. Why can’t I do more?

Because you can’t and that’s fine.

Ugh.

Fine.

I’m back to working out fairly regularly. Listening to my body and doing what it wants as a way to release some of the pent up anxiety. So I’m getting stronger again and it’s helping me sleep better AND I’m not punishing my body in the process in order to meet fitness goals. I’m just moving for the joy of moving…and the better sleep that comes from it.

That’s me. Less dark than before, still a little twisty. Feeling cautious about the future and trying to stay positive, but not Pollyanna about all of this.