Day 4

I can’t find his smell anywhere.

Of the many things cancer took from us, one of the most profound and most upsetting what his smell. Andy smelled of clean clothes, cold air, fleece, and, there’s no other way to say it, man. He had this wonderfully comforting smell that I would breathe in while nestled in his chest, folding his laundry, or even walking hand in hand. I would lean over and, like a weirdo, just sniff his shoulder. A deep inhale that would soothe my frazzled nerves and remind me that home is wherever that shoulder was.

Cancer took that smell. In the last few months of his life, Andy smelled of antiseptic, skin barrier (which has a sort of cloying thick smell), and cough syrup. He didn’t drink cough syrup, but the combined smells of all the other stuff on him would create a distinct smell of cherry cough syrup. The kind that used cherry to help make it go down, but really it was an insult to cherry because really it just tasted like medicine.

Andy gave me that joke. When he would do his colonoscopy prep (12 total in his last 15 years), he would get a big jug for the prep medicine and they would include this little packet labeled “lemon” with a cartoon lemon on the front. As if the lemon would help what was ahead of the prepper. Andy would leave it taped on the jug during the whole process and regularly remark, “That packet is an insult to me and to lemons. Nothing can help this stuff.”

I searched for his smell for weeks. I handled every piece of clothing, every hat, sock, jacket, pillow case, everything. And all I got was laundry detergent or that sickly smell of cancer.

Friends said, “Keep looking. I’m sure there’s something.” But there isn’t.

Not having his smell is the cherry on the shit sundae of this situation. While this all was going down, I would imagine that I could at least bury my face in his green fleece jackets and still breathe him in. But, no. I have to construct the smell from memory. And then I get a lump in my throat from the thought of that smell, the missing that smell, and the injustice of everything with this.

How can he be gone? How?

How are people who are way shittier and way more awful still alive while Andy isn’t? Is this part of some cosmic plan to teach everyone who touched Andy a lesson? Is Andy the center of some great wave of learning?

If so, fuck that.

I said in Andy’s eulogy that this was a cosmic injustice. And I stand by that. The slightly less cosmic injustice, more of a galactic injustice, is this absence of his smell.

Day 3

I’ll never forget the moment I snapped at one of my clients after Andy’s death. They were talking about a struggle at work, as all my clients do because that’s what I want to know. They were going on and on and onandonandonandon about it. I finally broke in and said

“It could be worse. Your husband could die of secret cancer.”

I hadn’t planned on using Andy’s death as a source of perspective. People had already been downplaying my capability, not allowing me to stand in my truth by saying things like ,“I don’t want to complain to you. My problems are so trivial compared to yours.” Um, yes, they are, but also you don’t get to decide for me what I can and can’t handle. And if you’re self-conscious about your complaining, go work that out with you and your therapist. I was trying to get people to include me. Weaponizing his death was not in the plan.

I had deliberately kept myself away from others and eased back into work so I wouldn’t compare the death of my husband to someone’s workplace issue.

Because they aren’t comparable and it’s not fair to either of us to compare it.

But I couldn’t take it. Some people I just want to shake and shock them into some perspective.

So I said it. And they stopped and redirected to actual problem solving. To not just stewing in their juices, but to actually getting out of the juice, or seasoning the juice. They shifted.

“Those who cling to the world, endeavor to free them…”

That’s what I had always sought to do; made it my life’s work to free people from burden–real or self-imposed.  But with Andy’s death, it became more vital to give people perspective. I would look at my clients and think, I know it feels hard. I got into this work because I wanted things to feel less hard for others. But in comparison to this, it’s just not that bad. Have gratitude that your worst problem is an overlong email chain and not an overlong life ahead of you without your soul mate.

I only had to say it once. I only had to shock someone once and I never used Andy’s death that way again. I never told someone to feel less because I was feeling more. People have told themselves to feel less while I feel more, and for their self-awareness I am grateful.

I’m told that my grief doesn’t have to be a lesson, that I don’t have to learn something or teach something out of it.

But I am a learner and I am a teacher, so I will do both.

Don’t tell me it’s the rainforest when I know it’s the desert. Don’t tell me not to share my desert. Don’t presume to know my desert. My desert has a lush oasis that I go to when the solitude and sun are too much. And sometimes I leave the oasis when the beauty and comfort is incongruent with my pain. So I climb a dune and look around and help a pilgrim on their journey through the desert. I am allowed to help and I am allowed to walk away. And I’m allowed tacky umbrella drinks if that’s what fits in my oasis.

Day 2

Grief is unknowable.

We lack the right words to describe this feeling. We try with “sad” or “overwhelming” or all sorts of metaphors,  but this feeling, of love lost and yet still alive, is so beyond the realm of words. I bet there’s a good word for it in German or Swedish. It’s something like liebeschmerzen. Which literally means love-pain. I know a tiny bit of German because my husband was enamored with his German ancestry.

I am incomplete. Maybe that describes it.

I don’t forget Andy is gone, but the feeling fades and then reemerges.

The idea of recovery, of moving on, is a farce. And even if it were possible, I don’t know if I would want to move on, to recover from the greatest love of my life. Do you see how absurd that is? The idea of recovering from love? It’s just not possible, nor is it wanted. I don’t want to “recover” from Andy like one would a cold or an addiction. I want him to be fully embedded in me. I want to never forget him.

I want him back is what I want.

We’re experiencing an unprecedented time right now. Our city, the city I grew to love because of him, is being told to stay home, keep your distance. Our love grew from our work in theatre, which is an industry that requires a lot of people and a lot of close proximity. I don’t know how to exist in this city when I’m being told to stay away. It’s painful. It’s a new kind of grief to not experience his hometown, which served as a cocoon for me,  while everything is so scary.  I have to keep me and my son isolated from all the things we love that remind us of Papa.

Well, not everything. I’m breaking some rules by still having limited contact with a few people: His sister and her family, who I helped move earlier this week, friends I met because the husband and Andy were co-workers and are now among my favorite people on the planet, my son’s godparents who were chosen because of their level of love for our son and the similarities between them and me and Andy. I’m still seeing all of these people who remind me of him. Because everything in this city I get because of him. Everything I love, my son, my house, my job, it’s all because of him.

So there will never be recovery, moving on, feeling better. There is only moments of not feeling terrible. Don’t ask me how I’m doing. The answer is rote, unfeeling, and untrue. I’ll always tell you I’m “hanging in there” because that’s the only option right now. But it’s a form answer. Almost as form as “Fine,” but with more details so you leave me alone.

I’d rather answer “How has it been lately?” or the real question you want to ask “How on earth could I survive what you are dealing with? Can you give me a hint that it’s survivable? Could I do what you’re doing? Could I do it and not collapse in on myself? You haven’t collapsed, is that a sign that you can live without your person?”

I am not living without my person. I am not surviving. What I am doing is making anew. Which sounds romantic and poetic and really it’s just the fucking truth. I have the beautiful human, my son, my tiny Andy, who needs my care and love every day. I can’t collapse in on myself because he would be left alone. And the grief of that, that is on par with the grief of losing Andy.

I do what I do for him. For Ronan. I haven’t yet started doing it for me. For now I sleep and eat and work and go to therapy so I can be a loving mother to my beautiful son who did nothing to deserve this and will never know his Papa the way I did. Maybe this will shift. I hope it does so life doesn’t feel so fucking meaningless sometimes.

No guarantees you’ll survive this. It remains to be seen if even I’m surviving this. For now I am building anew and I don’t have a plan beyond “stay alive so you can raise this tiny human to be beautiful.”

Day 1

I used to be selfish.

I used to be broken to the point that everything I did or everyone I interacted with had to circle back to me. I’m a psychologist now, but I don’t need my fancy credentials to tell me that this need existed because of how I grew up, how I was raised, how I was loved. I was not loved in the way I now know children should be loved–unconditionally, fully.

So I had to make everything about me so I could get love, attention, affection, help.

Then Andy got sick. Stage IV hit us like a slap across the face. And suddenly, I had a reason for my selfishness. I could lean into the victimhood of cancer and show off my caregiving. Which makes it sound like I used caregiving as a means to an end, but really, caregiving was what I would have done anyway. Because Andy was worth it. Andy was worthy. Andy was the only person on the planet–besides my son–who was worth my tireless focus and energy. Not tireless. Entire. Because I was tired. And I talked about that because that was part of the victimhood.

As we got deeper into cancer, I could lean even more into that selfishness, the need to be at the center, to be praised in excess, to be loved without limits, to be shown unconditional support. It evolved. It went from a need to fill in the broken bits like those Japanese pots that get molten gold poured into the cracks, to actually becoming…healthy.

I could see that no matter how hard it got, how much I was me that people weren’t going to leave. That, if anything, I held the power in this relationship. I could choose to stay or go.

I used to be desperately afraid of being seen as selfish. My dad was selfish. Everything that was good was turned into a way to abuse you. So if I showed even the slightest hint of need, of want, of–again–what I now know is totally normal kid things, it could be weaponized. So the only way to get attention that couldn’t be used against you was to get it by being a victim. Who was the most in pain? Could it be bigger than Dad’s? Can you make your pain bigger than that of an alcoholic narcissist’s?

Turns out you can’t, but you sure can try.

So, after getting all my cracks filled with molten gold, I slowly became mostly whole. I started to see the support not as pity for me and my family, but genuine love and concern. People would donate money and time and food and bandwidth to keep us company because we were worthy of love and attention. We were loved. I was loved.

When Andy died, I got an onslaught of love and attention. And, for the first time, it was too much. I didn’t have the chronic need to fill up anymore, so I could safely say that people could keep their distance. I was no longer filling a pit that had no bottom.

Andy was the first person to help me find the bottom of that pit. His cancer helped to fill it. His death showed me that it is pretty much always full now.  The pit became a lot that became a park for play and respite. (That’s a small nod to Parks and Rec.)

I used to be selfish. Turns out I still am. But I’m not selfish because I need love. I’m selfish because I’m human. I already have an abundance of love.

4 months

4 months today since Andy died.

Somehow the last four months have felt like an eternity, so I keep thinking this should hurt less by now, and then I realized it’s only been four months.

I continue to be amazed by the feelings. The universality and yet individuality of this experience is hard to reconcile. I feel the heaviness, the sadness, the anger, the frustration, the “crashing over and over again into a reality that can’t be real” as Megan Devine calls it.

And yet, it feels so personal. So strangely unlike what I hear from others. The nuance in this grief is sort of awe-inducing. Like, yes, I feel angry, but to lump it in with the anger we think comes with grief feels like it cheapens it; that it doesn’t accurately capture it to call it anger. Righteous injustice, maybe? Gross indignation? It’s more than just anger.

And the heaviness.

Yesterday, Ronan and I had a beautiful day. We went out to lunch, went to a park for a couple of hours, played at home. Even the battle over dinner that resulted in Ronan wanting to go to bed early was weirdly fine.

After I put Ronan to bed a full hour earlier than normal (at his request! Poor kiddo was so tired.) I sat on my bed, folding laundry and watching Lost in Space, and felt as if I would never be able to get out of bed again. Andy and I used to joke that after putting the kiddo to bed, the gravity around the couch or our bed would increase. This was that, but more. It was more than just the exhaustion that comes with parenting a young child. I’ve had friends assign the word “depression” to it. And maybe that’s it. But it feels so foreign. And it’s entirely born from the feeling that Andy could not be a part of and witness to our beautiful day together. It was the kind of day that when we talked about having a child, we pictured this kind of day.

I hate that he can’t be here for this. And I hate the fear and dread I have over the endless days stretched before me without Andy.

I did the math that if I live to be 80, I only will have gotten Andy for 11% of my life. That feels terrible. How do I live with such a small amount of him?

I’m grateful for friends who continue to ask about him, say his name, tell me their stories about him, and express their incredulity at his absence. To say it is helping isn’t quite accurate, nothing helps right now. But, it normalizes. It makes my desire to talk about Andy, not just as the source of grief, but as a whole, beautiful person who I am still deeply in love with, normal. People who still treat him like my husband, and not a chapter to move past, they are my helpmates and life preservers in the most harrowing storm I’ve ever weathered.

It’s also weird that this storm, being the most harrowing, is almost entirely internal. Cancer care, healing from being a child of alcoholics, that journey was far more visible. This is a silent, internal storm, so I think it seems like it’s not happening. But it’s happening.

My own internal Hurricane Andrew.

Unpacking

Ronan and I spent almost two weeks in Florida on what I am calling our “Grief Tour.” We have a series of trips planned this year that are specifically designed to help us as we navigate our first year of grief.

The first trip was in early November 2019 when we went with Andy’s family to Iron Springs. It was what we thought would be the last trip we’d ever take with Andy and instead turned into a special weekend of spending time together as a family.

The second was in early December 2019 when I took Ronan to Disneyland for the first time. We had his godparents with us and his godmother’s brother, so 5 adults to 1 toddler, which is the ideal ratio in my opinion.

This trip was an extended tour of Florida that included visiting my best girlfriend from college and her husband in Tallahassee, staying one night in Orlando to see friends from college, and then heading to South Florida to stay with my brother and his family.

We had a time. I won’t say a good time, it was a time. Nothing really feels good these days. There are moments that feel brighter, but overall everything has a wash on it, a filter that makes everything a little blue.

We’ve been home for two days and I feel as if in a fog. Interacting with family and friends was a helpful forward trajectory, but I’m realizing now just how much I would cut off from the world if I didn’t have regular external input from friends and family. It would be easy to stay in my house all day, puttering, ignoring basic responsibilities and settling into the typical images associated with widowhood.

Being with my family and friends sort of forced a feeling that things were ok. I didn’t really cry while on the trip, but coming back I’ve cried a lot. Like a lot a lot. Ronan and I had such a fierce tete-a-tete last night that we both ended up in heaving cries, me inducing a sort of low-level panic attack and him throwing up. I’ve heard that kids sometimes keep it bottled up until they’re in a safe space to let it all out, and I think we both experienced that on the trip. It shook loose some parts of grief, but also kept us from fully engaging with it.

I don’t know if this was overall good or bad. I know being with my brother and his wife was among the most soothing things I’ve experienced in months. And Ronan took to his cousin so well it was sort of shocking.

Being home has felt surreal. The house was tended to while we were gone, so we came home to a clean house with a fed cat. But, Andy’s absence is a presence. It presses in on us and sometimes I get paralyzed with the scooped-out feeling I have in my heart.

Today we returned to some normalcy. Ronan is off to school. I have therapy and work. We have beloved friends coming over for playtime and dinner tonight.

Before the trip, I felt like my life with Andy was something that happened in a movie. It was a reality so at odds with my experience that it didn’t feel like it had happened to me. Now, I feel the loss in a new, deeper way. A part of me has shaken loose the feeling of other-ness. I can feel the things I experienced with him as if they happened to me, not like I’m imaging what they felt like to a movie character or something.

That’s a new kind of gift, but also a new kind of intensity I was unprepared for.

So today, I’ll go to therapy, talk about this whole experience, go coach some clients, and then maybe come home and unpack. Both my luggage and all these feelings.

When life takes a dump on your chest

Mmmm. What a ladylike title, right?

It’s how I’ve been feeling lately. Because trying to raise a toddler when your co-parent has Stage IV cancer isn’t bad enough, I was fired from a job I actually liked for literally no publishable reason on Friday.

Pluses: My boss offered to be a reference and write a letter of recommendation. I now can party with Ronan more. I can be with Andy all mornings before his call. I can wear yoga pants more regularly.

Minuses: Oh, you know, just, like, a lack money and healthcare and security and meaning and purpose and structure. Just those things.

I had a mini-piphany the other day. This is when you have an epiphany that shifts your perspective just a little so you don’t end up having to travel to Italy, India, and Indonesia to find meaning.

I have been telling the religious among me to pray for peace for us. We have strength, we could use some peace and calm.

But, what if this is actually just my normal?

What if the plan for my one small life is to bring me immense challenges and force me to navigate them? What if I do this so others can learn about their own strength or so they can develop a road map for themselves? What if it teaches me how to find calm in a storm or peace in a war? What if all of this is so Ronan can see what it’s like to do good work in a world full of trials so he can do something incredible like be the best damn chairlift operator in all of Washington?

Who am I kidding, he’s totally going to go the East Coast and swear the snow is better like a weirdo.

But truly, what if this is it?

Maybe if I stop hoping for a break, I’ll be less thrown for a loop when the hits keep coming. And maybe then the moments of respite will seem sweeter.

So I’m going to try that. It means expanding my capacity for turmoil a little more and I’ll have to change some things in my physical environment and the systems I use, but we all know I’m a willing and able prototyper.

Cancer giveth and cancer taketh away

FYI the actual bible verse is Job 1:21 and it goes: “He said, ‘Naked I came from my mother’s womb, And naked I shall return there. The LORD gave and the LORD has taken away. Blessed be the name of the LORD.'” That’s from the New Standard Bible. So update your internal pop culture compendium, y’all.

Gang, it has been a wild couple months.

I started the new job and it is a doozy. I downloaded with my ProConsult group a few weeks ago and they were like, “That’s probably only 10% and I’m already overwhelmed.”

Fer realz.

So I’ve been complaining a lot to my inner inner circle. Two of my besties had to give me a reality check when I said I was feeling like I needed an attitude adjustment. Both were like, “Um, you’ve earned the right to complain.” And when I said that I was worried people were thinking I should have my shit more together by now, one was like, “Yeah that has never even once crossed my mind.”

SO! In an effort to process all the stuff in my head, I wanted to do a little thing about what cancer has taken from us, but also what it has given us. Well, specifically, what it has given and taken from me.

Taken

This list is ever expanding so I’m going to narrow it down to the top 3 and they are hopefully things that I haven’t talked about already. But if they are, WHATEVER, IT’S MY BLOG.

Connection. A woman in my caregiving group said, “I’m with my husband more than ever, but really I’m so lonely.” This is exactly what I’m feeling.

Andy and I spend a ton of time together, but it’s all in the presence of other people who are medical professionals or other cancer patients or people who really want to know how we’re feeling and spend a lot of time asking a lot of questions to seem like they are being supportive. (Don’t worry, it’s not you.)

Out emotional bank account is close to being overdrafted pretty regularly. Our limited time we used to spend having deep connection in the form of challenging conversation about self-awareness, growth, love, and politics has now been reduced even more. We basically give each other highlights in the 15 minutes we have when I’m in bed and he’s gotten home from work. Baby free time is spent resting for both of us, rarely are we in a restaurant or coffee shop or on the couch and feeling fed, watered, physically comfortable, and logistics managed enough that we can move on to more intimate conversations.

Just this morning we used a breakfast date to determine what additional insurance we wanted to add to my work benefits. Truly stimulating conversation.

This lack of connection is truly surprising to me. I thought with all the time we’d have during chemo or car rides to and from doc appointments we’d be able to check in regularly. But really we’re both so fried that we just watch TV or listen to the radio or he sleeps and I write.

Sex. Imagine having a low-grade flu all the time and that’s basically what Andy’s experiencing. Add the work of a new baby and that’s basically what I’m dealing with all the time, except I’m down an adult. Sexy, right?

I had an extensive conversation with one of my caregiving groups about physical intimacy. A woman who’s husband is in the end stages of life mentioned that they hadn’t had sex in over a year and how disappointing it was to realize their last time was their last time.

I have a couple of friends who are giving me their version of essential oils and insisting that we need to be having sex. Ok. Sure. Fuck off.

Did you know chemo creates toxic bodily fluids? (Sorry, parents.) So if we were having sex, we’d have to go back to barrier methods because I could get very sick. And I don’t have the brainspace for dinner some nights let alone condom shopping, so that isn’t a thing.

When Andy had his chemo holiday a couple weeks ago we thought we could have sex then. But then he got the goddamn chicken pox, so that was a bust.

He insists we haven’t had our last time, which I believe, but I know it will be a while before sex re-enters our lives again.

Money. I know you think you know about how expensive cancer care is, but you really have no idea.

Sure, we have the usual medical expenses, but we also pay for parking, hospital food, child care, medication, special food when Andy doesn’t have an appetite for something, supplements for protein, muscle spasms, and energy, stuff to hold stoma supplies and medication, modifications to our house to hold all of this, lots and lots of soap. And all of this is done on the same or smaller income than before. Because even though I have a job, it’s just barely making up the difference in Andy’s missed salary.

I’ll do some kind of accounting at some point, but it’s expensive. We collectively suck at helping people through illness so it isn’t a huge financial burden. No wonder so many people accrue medical debt. We likely will, also. Again.

Given

CommunityWorking in theatre, we always knew we had a tighter community than the average human. But having cancer made it abundantly clear to us just how tight that community actually is. The Willhelm Army Facebook group has over 100 people who are just hanging out waiting for something to do.

I know that when the time comes to ask for what we need during the HIPEC, it will not be even half as hard as a normal fundraising campaign.

We are cared for and, for the most part, have people willing to offer their help if we can articulate what it is we need.

A sense of ability. Prior to cancer, I spent a lot of time questioning how good I was at managing all the stuff that comes with being a new mom.

I was not great at the sleep deprivation and the unknown outbursts from an unhappy baby. In talking to my therapist, I realized it was largely triggering feelings of trauma from when I would walk around my house as a kid and be unsure when the hammer would fall. This is also why I had to leave stage management. The need to jump and answer to the sometimes totally fucking unnecessary whims of narcissists and egomaniacs was not good for healing.

But, when the dust cleared post-diagnosis, there were moments where I would be driving with Ronan in the backseat, coming home from work or a client meeting, or picking him up from his caregiver and I would think, “We can do this.”

And this means both the current push through cancer and if the moment happens where it’s just me and him.

We can do this.

I keep that in mind when I start to feel weak. When I have co-workers who get snotty about something or get frustrated with idiot drivers or whatever. (Why can’t people just do a damn zipper merge?)

We can do this.

Or, more specifically…I can do this. 

Clarity. Prior to all of this, we knew we were a lucky family. We knew we were living a beautiful life full of love and we routinely marveled at how we kind of had this “deep, loving, respectful friendship/relationship” down.

Now, we have the good fortune of being aware of just how good we have it.

When Andy got the diagnosis and we were thrown numbers like “18 months” and “2 years,” I asked him if there were any undone things he wanted to do. And after a moment’s pause he would always say, “No.”

Sure, I would love to travel with him and see more movies and eat more good food and have him watch his son grow up (that last one in particular).

But in reality, our life is idyllic, lovely, challenging, and kind of perfect. We don’t need to have any major bucket list moments because our life is already beautiful and doesn’t need anything additional to make us feel fulfilled. We live a beautiful life and we just want time with each other.

We want time to snuggle with our kiddo and watch him try to eat eggs and go for walks and look at the mountains and drive around with a fancy drink in the cup holder. Really, just living day to day life for us is lovely.

And without cancer, we would not have realized that. We likely would have spent the rest of our lives chasing the next vacation, the next car upgrade, the next chance to renovate part of the house. Now, it’s all about making choices that enhance our already beautiful life.

Which, tbh, may include a vacation, but most likely just burgers for dinner so we can watch another episode of the West Wing.

A letter

Dear Congressional Representative,

I am so tired today, aren’t you? I’m fighting a cold and my 18 month old is sick and my husband is having a hard time with his chemo treatments. I started a new job last week and I’m managing the stress of getting the kiddo off to his grandparents or his nanny share every morning and all the different logistics and checklists for myself, my baby, and my husband are kind of overwhelming.

My son got really sick on Monday. We ended up having to go to urgent care for his first ear infection, which, because us Willhelms do everything to the extreme, turned out to be in both ears, plus an acute viral infection in his throat. No wonder he wasn’t drinking any fluids. I had to leave him at home on Tuesday, which was so hard because I both wanted to be with him and desperately wanted to work at my new job so I could have some respite from the constant onslaught of logistics and management all day long.

See my husband, he’s 47, was diagnosed with Stage IV Colon Cancer in November. It was really sudden. He had no symptoms and it’s a type of cancer that can’t be detected through the annual colonoscopies or CT scans he was getting to monitor his Crohn’s Disease. Hell, we had been saying that it was best he had felt in the 10 years we had known each other. What a kick in the ass to find out it was Stage IV cancer.

But anyway, he was home with the baby on Tuesday and I had to keep saying silent prayers and checking in to see if he was doing ok because he’s immunocompromised. And a cold, which was already tricky because of his Crohn’s, could be devastating with the chemo.

But we had no other options, right? He couldn’t go to his nanny share. We didn’t want to get her kid sick, too. Grandparents, while they are amazing, we try to use them judiciously and a sick baby for a whole day is a lot to deal with. So he stayed home, fatigued from the chemo with a fragile immune system that I hope holds up to this bacterial and viral onslaught.

So in addition to the sickness of the baby, we’ve been managing the cancer: the treatment, the grief, the upset to work. Thank God he has an employer who actually cares about him and is making our lives less hellish by actually making it easy for him to work. He’s the Master Electrician at the Seattle Repertory Theatre, a big regional non-profit theatre that he’s worked at for 20 years. He LOVES his job. Like in a way that tells you someone has been paired up with their true calling.

But I write today not about his healthcare (thank God for his union’s good coverage) or the lack of affordable daycare, or the difficulty I had finding work with two Bachelor degrees and a Master’s degree and the crushing amount of student loan debt I got following the advice to “get more education” so I could get a good job. Today I want to write to you about guns.

You totally knew that, though. The little form online made me tell you that. So, spoiler alert, I’m feeling mad about the recent shooting in Parkland, FL.

I grew up in South Florida and moved to Seattle in 2008 after college. My sister in law is a teacher, my brother’s best friend and his wife are teachers. I don’t fear for their safety every day, because statistics means that it’s unlikely that the shooting will happen at their schools. But, what about when statistics catches up with me? What happens when my son, who isn’t in school yet but will be eventually, because we believe in the public school system, what happens when his school is the site of something like this? How on earth could I live with myself if I didn’t do my due diligence to make my fear and anger known to those who actually have the power to do something?

But then I pause and think, “What the hell is the point? The Dems did their one sit in and nothing happened.”

And now you have so much you are fighting for: healthcare, taxes, Dreamers, general nonsense from fellow lawmakers who seem to have forgotten they are governing people and not faceless voting blocks or donors. How can I, in good conscience, add to your list of struggles?

But really, how can I not? My son’s life is on the line.

My son’s life is on the line.

Do you have kids? I think you do. So, you must know this fear. The fear of motherhood where you let a piece of your heart walk around outside and the strings of worry and love and strength stretch from you to them in a way you didn’t know about until you had your child. I didn’t know the vulnerability I would feel until I held my son in my hands (he was 5 weeks early so he was little) and realized just how vulnerable I would be for the rest of my life. I could be made to do anything for him.

My husband’s mortality is something we are dealing with every day. We don’t know if he will kick the cancer and survive or die a young death, but his mortality that is literally in question right now does not feel as fragile as that of my son’s and his future classmates.

Please, for the love of God, do something.

I listen to NPR and watch CNN and read the New York Times and listen to Pod Save America like a good liberal does. I work very hard to break down internal bias and fight for equity and help my husband and those I can affect learn more about sexism and racism and ableism and fatphobia, but you have got to help me here. I need to take something off my list of things to worry about and fight for and my son’s safety in his school really needs to be one of them. Please.

So, what do you need from me? I’m joining a local mom’s group to be an activist for change in firearm legislation. I support local government and vote in every election. I donate to campaigns when I can and to charities and the odd GoFundMe for people who can’t afford medical care or need to send their kiddo to a once-in-a-lifetime ballet camp. What else can I do to make our country safer and better and less hard to live in?

Thank you for your guidance. I promise I will take the information you give me and be a constituent you will be proud of. Just don’t send me something like “donate to the blah blah blah.” I can’t do that anymore.

Thank you,

Verhanika Willhelm

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 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.

 

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.

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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