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I am an emotional shamwow

I’m a little brain fried today. We’ve had a few days of battling some illnesses and my body and brain are tired from logistics of a slightly under the weather baby, husband, and self. But, I’ve been getting a lot of private messages and texts asking about how I am.

And we all know I love to talk about myself, so here’s an update.

Things are…ok. Stable-ish.

Andy is coming to the end of the second round of chemo. We’ve found a rhythm. Ronan and I are back in the swing of coworking and grandparent daycare and hanging out together.

I no longer have to lay down for all of Ronan’s nap time to feel human again. I actually got everything lined up for my business taxes, which is a pretty sizable undertaking.

The fog of grief and depression are lifting and things feel…normal. Breakfast, activities, lunch, nap time, errands, dinner, bed. The rhythm has emerged again.

But I still get slammed regularly by a reminder of the non-normality of it all. Andy has a pump on and can’t turn easily in his sleep. Ronan is being a baby and kicks Andy in the chest and Andy’s immobilized with pain because Ronan, of course, found his chest port. A list of everything we need for chemo day for ourselves and Ronan sits on the kitchen table. The cards and presents from loved ones sit in our living room as a reminder that we are loved and that love is coming in strong, hard waves because of something as devastating as Stage IV cancer. Someone posts in a Facebook caregiving group about how their loved one had a symptom like Andy and it turned out to be even worse cancer than they thought. Someone has entered hospice care. Someone has died.

Those ones are particularly hard to read and I usually have to walk away from that part of Facebook for a few days.

But never Facebook as a whole because sometimes reading about other people’s stuff is the only way I feel connected.

Also, y’all are good fodder for blogs for Willhelm Consulting. I can take a societal temperature via social media.

I’m still sometimes overwhelmed with the concern about how to pay our bills. Or more accurately, how to buy groceries, gas, diapers, and the crazy non-essentials like a take out meal when our baby has fallen asleep in the back of the car and we want to keep driving so he gets a decent nap. I’ve been told over and over that help will come and people won’t let us go without help. And yet, there is no structure or rules around how and when to ask for money in these situations. And, call me crazy, but out of all the things I’m managing, finding the courage to ASK for money is not something I’m really going to work up the energy for. The human brain can only handle so many open loops and some are bigger than others. My brain hit its capacity 58 enormous loops ago.

At some point I’ll update the GoFundMe with a new amount if Andy is out of work during the HIPEC procedure (God willing that happens. I’m so superstitious about it.), but for now I’ll just check into Mint every day and be very, very judicious about how and where I buy groceries.

You know, the fun stuff that a family in existential crisis should be dealing with.

And even if I wanted a full time job (I don’t) it’s not like the offers are rolling in. That’s not true, exactly. I did get an offer for a slightly less than part time job that comes with childcare for a company I care deeply about. It’s not consulting work (yet), but I can do my back end stuff if things are quiet, so that’s a positive development I need to keep in mind. The start date is fuzzy, which is why I’m not treating it like a done deal yet. A lot can change.

I’m using some consulting dollars to hire a resume coach to help, but I’m sort of mad that I have to do that.

I’m just mad a lot right now.

I’m mad that people can’t keep their shit together or get help so their crazy doesn’t spill out sideways.

I’m mad that the richest country in the world has no safety net for those of us managing serious illness or caretaking those who do.

I’m mad that a group of very wealthy people thought donning black designer dresses would be helpful to those of us who can’t pay for health insurance AND still deal with discrimination and harassment. Or maybe they weren’t thinking about us. Thoughts for another time.

I’m mad that I’m highly educated and smart, sensitive, compassionate, and funny as a banana peel, but I can’t find a way to make a living at 31 that can sustain my family. It’s just not what I had pictured at this age.

I’m mad, so so so mad that our lawmakers don’t just make single payer healthcare a thing. It’s fucking inevitable, let’s just do it now.

And I’m still mad at all the usual stuff like our President and mansplaining and fatphobia and the diet industry playing on new mom’s tenderness to make a buck and a lack of affordable, cute shoes in size 12.

So, yeah, the initial fog is gone and I still feel wildly helpless. Andy still has cancer, we are still stuck in this shitty shitty situation with not a lot of options or ideas beside the course we’ve been set on.

I wake up every day scared that I’m about to lose him. It sucks to go to bed on New Year’s Eve and wonder if this is the last time you will see the calendar change over together.

Will Ronan grow up without a father? Will I have to raise a teenager on my own? Were we poised to raise a well-adjusted, happy, healthy, adaptable boy who could actually be a part of the change in our culture we desperately need, but now that will all fall apart because he won’t have his papa?

Fuck.

It’s probably because I’m tired and listening to music that is making me sad, but I still can’t quite see the light. I still can’t plan more than 4 days in advance. Some days I can’t think about more than what Andy and Ronan need in the moment and completely forget my own needs until I’m dehydrated or hungry or have a bladder that’s about to burst. My body aches all the time from a lack of good movement. It just all sucks.

The shining light in all of this is that Ronan is still a smiley, happy baby and Andy seems to be managing everything very, very well. These Willhelm boys are mighty resilient and I hope that this resilience is working its way through the mucousal membranes of Andy’s body to kick the shit out of cancer.

I am their emotional shamwow and after all of this I’ll need someone to wring me out.

 

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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.

Posted on by issuesandtissuesblog

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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Meh

So after my last post I got a lot of messages and texts checking in. My post was very representative of the place I was (am) in and I remain committed to trying to keep this process more transparent for the sake of global education.

Also, I like to whine to a lot of people at once.

As the weekend has passed and I’ve watched Andy just get stronger and stronger each day, the acute sense of anxiety has passed. I’m still so, so deep in planning. There are so many plates I’m spinning and I’m just tired all the time. When people are taking care of Ronan for me, I find I have little energy for more than just scrolling Facebook. I’m not ashamed to say I rely heavily on long drives with the kiddo in the car seat so I can get a break from the pressure of the house, which has so many things that need to be addressed and is in a new state of upheaval.

Our bathroom is really hard for me to walk into.

We had to remove a bunch of things from shelves because toddler. But now we have new shelves that house stoma supplies and are at a good height for emptying a stoma bag. The wedge pillow for Andy lives on the couch and the leftover dishes from delivered dinners linger.

I’m reminded everywhere of the state of deep transition we are in.

I’m trying to do a lot right now.

I’m still trying to secure clients, apply to jobs, write regularly for our family, communicate with everyone, update calendars, track all the pieces, and still do some self-care. I get angry and sad when I think about how much more of this we have ahead of ourselves and how I desperately need a self-care routine to solidify and actually work.

I added exercise back into the mix. We went to the YMCA yesterday and I did a really straightforward 30 minutes on the elliptical. Nothing fancy, just pushed myself cardiovascularly so I can start to get my endurance back. I think we’ll go tomorrow morning so I can lift some weights. My arms are still like steel cords thanks to baby bench presses, but I can feel my back and core and pelvic floor slackening as even long walks have become difficult to work in.

I’m inundated with the sheer number of people who are constantly asking me questions. Some of them are good like, “Can I include olives in the meal I’m delivering next week?” Good question. (The answer is yes.)

But  have like 3 too many people asking for personalized updates that I just don’t have the bandwidth for right now. As I told Andy, a surprising number of people feel entitled to these sorts of updates. I appreciate the notes of encouragement, the cards in the mail, the texts that say “I’m thinking of you,” but I just can’t tell this story one more time to one more person when I have several outlets to collect this information.

Let’s face it, I’m tired.

I’m anxious about my ability to keep up with everything if I should eventually be a single parent. I’m doing research and asking questions about how to set us up for that (“us” includes Andy who is rightfully worried about it). Some people have told me not to think like that. SOME PEOPLE.

It relieves me to know that if I need house projects done that I have friends who have already committed to it. It relieves me to know that Andy is writing a house calendar for me of all the things he does around the house to keep it functional so I can follow it if he’s not around to direct that work. It relives me to know who exactly has my back right now, even if it all changes.

It abates my anxiety to do this ultimate Willhelm Planning. This whole supporting a family through the hard times is a contact sport. This is why we asked those present at our wedding to take a vow themselves to support us in times like this. Though I had always envisioned our marriage being tested because of boredom or something, not through an illness this serious.

His mortality scares me. Andy was always invincible to me. I knew that someday I would live without him, but I didn’t expect to have to reckon with that for another 20 years at least. We know so little at this point about what we can expect with regard to that, but the idea of being a widow in my 30s, losing My Person when we are just getting going…it’s unfair that we have to do this.

And yet, I think about moms who have to do this when they are sick themselves with kids and no family. Or people who go through this with literally no one. We are so lucky to be as supported and resourced as we are.

And yet, I don’t care. I want the guarantee that I (and Ronan) have more time with him.

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Will someone clean up this word vomit please?

You know most Thanksgivings I can come up with a substantial list of things I am grateful for. Everyday I can come up with at least 10. I live a pretty beautiful life.

But yesterday I was incapable of looking for things I am grateful for. Yesterday I was mad and scared and sad. Everyday I go through many cycles of grief. I come around to acceptance several times until I am faced with yet a new reality of this whole situation that requires a new cycle of grief.

Some examples:

Listening to Moana in the morning and thinking back on our trip to Maui in 2015 and how we likely won’t be able to explore all the Hawaiian islands together.

Watching Ronan dance to Moana and wondering if there will be a point where I won’t be able to listen to the music, not because my toddler has worn it out, but because of the other thing.

Watching Andy hold his niece at dinner, seeing how her beautiful red plaid taffeta dress spreads over his lap and thinking how, despite feeling like we achieved perfection the first time around and won’t have another kid, he will likely never be a father to a daughter. Or father in law to a daughter in law (or son in law).

How many more Thanksgivings do we have? I have a part of me that thinks someone has this answer, but isn’t giving it to me.

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The grief is triggering. I spend most of the day managing my anxiety about abandonment, unsteady attachment figures, a need to be more competent, more intelligent, more charming to get what I want, which is my husband whole, healthy, happy.

But, my full planner and overworked to do lists are not good coping mechanisms. In this time, I think I need coping mechanisms that balance the need to be ordered and the need to feel. I feel like I’m spinning 12 plates at once, but what I really need is a good workout or an orgasm.

Also, I need people to stop suggesting more things for me to do. I’m not going to seek out more doctors right now. I’m not going to suggest Andy try on essential oils or new diet. I do not want your suggestions unless you are someone who deals with cancer patients or have been part of the inner circle of someone battling cancer. Stop projecting your shit onto me.

I also need coffee shops to stop playing moody music. And I need a little break from movies where people who love each other lose each other.

I definitely would not be able to watch the opening scene of Up right now.

This time reminds me of when I was a new mom and I lacked the words to adequately describe just how fucking hard it was. Except now instead of balancing the feelings and work of welcoming a very wanted family member into the fold, we are trying to figure out how to keep one who is already in the family happy and healthy.

Health is so fickle, right? I hear a lot of language about how if people are just trying to be healthy then they can be whatever size they want and that’s the price of admission to being part of our society. But Andy went from presenting the healthiest he’s felt in the last 15 years to fucking Stage IV cancer. If that doesn’t highlight the reason why heath-ism is bullshit, I don’t know what will.

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Also, I’ve lost God.

I mean, we were never really tight to begin with. I sort of believed in the Universe or a collective unconscious. Last year I started playing with the idea of reclaiming some version of a Christian God.

Now, I can’t reconcile a lot of the language Christian religions use to describe God and God’s role in everything with what is happening.

Did God give Andy cancer? Does God really think we need to be tested this way? Are we less blessed because of this? Were we blessed to begin with? What is achieved by shortening Andy’s already shortened lifespan? How does this help me or Ronan or any of the other people who are clearly deeply affected by this?

God works in mysterious ways.

He sounds vindictive to me if this is how he chooses to be mysterious. Like the coworker who keeps using your half and half you’ve clearly labelled in the fridge as yours.

What if he’s the variety of God who stopped meddling? What if this is just a product of what he put into motion early on and we have to live with the outcomes? Then praying seems useless.

I’ve stopped praying. To a God anyway. I will sometimes have parts of me who will need to say out loud, “Please just let this all be ok.” I recognize these are parts of me who are young children afraid of losing the most protective, loving person they have had in their lives.

I don’t feel reliable. To myself, to my husband, to my son. If this all blows up, can I keep it together? I’m barely keeping it together. People keep commenting on how we seem to be handling this well. For sure I can present a version of myself that needs to be informative and accurate. I’m aware that there are over two hundred other people in the world watching all of this go down. (I didn’t even realize I knew that many people.)

I am aware of how many people want a silver lining in this.

Is it wrong if I can’t find a silver lining? I can’t find hope right now. I think in the whole large arc of the grief, I’m in Depression right now. (Denial, Anger, Bargaining, Depression, Acceptance–not necessarily in that order or with finality in any of the stages. Grief is not linear. Acceptance is not permanent.)

Ok, enough of this for now.