Tag Archives: Cancer

I’m Average; You Probably Are Too

File Under: What I’m Learning

I assume I am average in everything. Thus- what works for me should work for most. Turns out, neither of those things are true.

This is a shame for everyone who isn’t me, because I am unusually resourceful and high functioning. Call me a braggart if you want, but the professionals I have employed to help me navigate the recent upending of my life have had to tell me this and I’ve had to learn it. I was not a quick study. My eldest hit me with it as well: “Mom, you are the most functional person I know, And because you are so functional and you think you are average, you think that what works for you will work for everyone else. But the truth is that not everyone’s calculations, raw materials, values, damage and proclivities are in the same balance as yours.”

I understand myself and my life as mostly made of small practices and habits and I cultivate those carefully (from what I eat to how I listen, to how I get daily tasks done, to how I think.) And because I am average and so are you- cultivating practices is also how you should also address a life situation with which you are unsatisfied.

When Hot Swede got sick, I was desperate to have my partner return to connection and wholeness, even in the midst of multiple difficulties. I assumed that if he adopted a smattering of my practices he would start to feel better, and that caused a lot of irritation for Hot Swede. I was overwhelming and distressing. It caused me desperation because I did not understand why he would not do the things that I knew would help.

I have done this to my kids. To be fair, as their mom it is my actual job to give them tools, scaffolding, and practices. It is not my job to parent my husband. Nevertheless, it is called “nagging” by my children and “suggesting” by my husband. They don’t like it and don’t do the things. Apparently, other people address their problems differently, which is hard for me, because I see them struggling with things that I have under better control and I want to ask them, “Is your way working? No? THEN TRY MY WAY” I am told this is not how it works. (It should be how it works.)

This should not have taken me this long to begin to learn this, but it did, and I am clearly still struggling with it. The harder lesson for me is that the people I love have to figure shit out on their own and I can only walk alongside them, if they let me. This truth gives me mental and sometimes physical hives.

Some people hate advice when they are in a pickle, whereas I seek it out. If something is unsatisfactory, I want to be told how to do it so it will suck less. (Ex: I told a new therapist that I didn’t need her empathy as much as I needed her to point out where I was wrong. She has brutally done just that.) But I guess others don’t like ready solutions, or are very experiential learners who have to learn from their own slow and painful mistakes. *shudder*

This lesson is a work in progress for me- two steps forward, one step back. Turns out, I am an average learner. 

Notes from the Surgery Lounge

The angst is the same each time I am here. There is no relief. The surgeries are each more serious than the last, and the prognosis less desirable, but I have become more accustomed to being in the liminal anticipation of seeing what they find and waiting for what they miss. So it feels the same.


It is a trauma, and human, to hold up our life as two pillars and then be chief witness to Paul’s trials and try to hold up the roof as he falters. The fractures it is causing in me are deep and fine. None of us will be the same after this. I am asking whomever is in charge of these things for long periods of peace and a couple handfuls of joy. I toggle between anger, fear, and sadness for my children, my husband, his natal family, and myself.

I assume life will be hard. I am not surprised by this, just unwilling to take this path at this time, and a little heartbroken. I have lived with death in my periphery for decades. Some label me a pessimist; I call myself a realist.  It motivates me to not waste a day. When Paul proposed to me in my dorm room, I said “Yes.” The very next thought in my head was, “And one day, one of us will leave the other.” The best love songs are the ones that nod to our temporality. Therein lies the aching poetry- that love can be too big for the lives that hold it.

Cancer is an accelerant, consuming the small kindling, catching any fray in the sheathing and turning everything into a conflagration, while you stand surrounded and bewildered, holding one bucket of water.

It strips you of pretense and identities and leaves nothing but your values and the deepest stories you have told yourself (many of which will turn out to be at least a little false) It will change everything, and I mean everything. It took the marriage I thought I had almost immediately, leaving me unmoored, isolated and bereft of my person, even as he sat across the table from me, even as I cared for him and was scared for all of us.

I am the person without the tumors, but my health is different. I am gaining weight while eating less, I have hives and headaches regularly, I don’t sleep or digest well, my memory is shot, I am grayer and I cry with a frequency that is very new to me. It has strained my children and their worlds, especially the youngest, who still lives at home without the buffer of her older siblings.

And yet…

And yet, 9 months into this nightmare that no one would believe if they knew the whole story, we have learned things, good things, things we will carry forward for the rest of our lives. I am grateful for them, even as I beg to not be given any more wisdom.

But that is enough for today. They wheeled him away from me at 7:30am and it is now 5pm and I have not laid eyes on him.

Lit for Paul by Tom at Notre Dame Cathedral.

The Ugly True Thing

One thing I’ve learned is that Paul and I do not process the same way. His latest CaringBridge post makes me angry. It is true. It is also true that there is still hope, but the path is narrower and more harrowing. 

I honor that he wrote it. He needed to and I am relieved he didn’t hold it in his body.

This is a new thing he is struggling to learn- that the bullshit, very male, Midwestern tendency to shove down the big feelings is not the move. It is a pathway deeply worn in him. The muscular lack of self-empathy he developed to make it possible makes me fucking furious.

If someone talks about one of my loved ones the way he talks to himself, I will fight them bare knuckled and with no training- but I can’t reach inside him and throttle that voice that speaks to him 24/7. He has to decide to unseat it from its throne of lies and then he has to learn how.

This is an exposure too raw for public consumption- too intimate to share. Why would I share the ugly bits of this nightmare to our friends? Because I love you, and something will come for you or your beloveds. Its a plea to those of you who shove your feelings down and isolate yourselves- you will make it so much worse. You are denying the people who love you the chance to cloak you in healing love and peace. That hurts them. And if you believe as I do, that people carry the light of God into the world, you are separating yourself from God. And that is my actual definition of Hell.

I have a role in any shift he makes towards openness. He has been mine longer than he has not, and I have woven tight patterns with his. He was my Gibralter and I celebrated that about him- reliable, unmoving in storms that bowed me, able to show me the way out of my dark spaces. When he showed big emotions, my first reaction was to judge them as immature, overwrought, unattractive. On the occasions they are hurtful, he is be responsible for that. But they are also a symptom of deep underground seas of caustic emotions that he has kept dammed up, of which I have recently become aware. I am horrified and saddened by this discovery. And in reflecting on my initial judgements, I see that I inadvertently reinforced the lie that his feelings were not acceptable outside of himself.

I am practicing letting that first response go by. I am learning to not shy away from his emotions, as long as they are expressed in bridled ways that don’t hurt. I am trying to be an anchor in those moments and hold space for him to feel without me trying to intellectualize it away. I am not a very good anchor yet. I hope I can become steady enough that he can trust me enough to lean on me. I am learning not to cloak myself in his feelings. They are his, not mine, but I can help him carry them without taking them over as my own.

I don’t want to learn these things. Learning new things when you are 48 is hard, and this kind of learning only comes out of struggle and necessity.
 

His post below is hard for me, but it is good that he wrote it. I hope he will add the truth that he can heal, is worth healing, and can live today. And I hope his people will remind him of those things. They are hard to keep in focus.

Paul’s CaringBridge Post