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How things are going. The struggle for polite honesty

“So Tinu. How’s it going?”

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The swirls and flux in this rendering express how I feel at any given moment lately. Not even sure how to define “I”.

Do you ever wonder how we got to the default of answering “Fine” in our society? Is it actually impolite to answer the sincere question about how you are in more words that can be measured in a stride past one another?

Is the question actually sincere? Do we really want to know how other people are every single time we ask?

(I mean, if you’re not from Texas. Every single time I go to Texas I get caught in half hour conversations with strangers that start with the phrase “how are you?”. I find it both frightening and charming.)

And if we don’t, is that a bad thing?

Maybe we want to check in with each other, but there’s no way to quickly say “you’re not doing bad enough that you need my help right now are you? Because I’m kind of busy and just wanted to acknowledge you as a fellow human being without getting into a whole thing.”

Which “it” do you mean?

More often than not there's too many MEs here...

More often than not there’s too many MEs here…

When people ask me how I am now, it’s kind of a loaded question.

For some reason, even though I know I don’t need to, the question of how I am immediately throws me into a panic.

Like when you were called on in school on that one day when you were trying to just quietly blend into the wallpaper.

And it doesn’t matter that you know the right thing to say. You just didn’t want to be called on that day. Something about that feels wrong, anti-social somehow…

So yeah. I load that gun myself with my scary bag of self.

Part of the reason I changed the direction of this blog from the occasional rant or introspection that only friends and fellow introverted strangers would care about, to an first hand account of my hidden illnesses and cancer experience, was to help people.

The hope was that I could help

  • end the silence around hidden illnesses
  • help change the conversations we aren’t having about and around the topic of cancer
  • reveal some of the experience of having cancer to make it less scary for both first time patients and caregivers
  • and store tips and lists of resources for others so they wouldn’t have to go through what I went through to find all the things they need to deal with cancer, in one place.

We talk a lot about fighting cancer, we talk at/to cancer patients, we talk at the fringes. But one on one as humans, when was the last time you had a conversation with an individual person about their cancer experience, without being a caregiver or a patient?

Why aren’t we talking about it when we will all be touched by cancer at some point in our lives?

As those queries pop up in my mind, I struggle to hold myself accountable, to tell my story with as much accuracy as I can stand, painful or joyful, knowing that even if I’m as honest as I know how to be, I may only be able to reveal a tiny glimpse of what it’s like.

Yet knowing, always remembering, how much that peek helped me when I had to care for a friend who had cancer, and how much it calmed my fears when I found out I had cancer myself.

So this is why it matters

To get to honesty, we’ve gotta start with the basics. That’s why it matters, answers to even these basic questions of how we’re doing.

I struggle with this question so much it’s comical. I’m already a really introspective person,  so I never have an accurate ready answer even on a GOOD day pre-cancer, and usually stick to the robotic lie of “fine”.

When you have cancer inhabiting you, people press.

Which is fine, and is loving, but doesn’t exactly make eliciting a response quicker or better.

When you ask me that, I do a check in with my body, mind and finances. (I’ll tell you why finances in few moments.)

And then if you’re still there after my moments of pondering, I’ll answer however I think is appropriate in the time I’m guessing we have for a quick response or a deep answer.

And this is what goes through my mind while I formulate that answer.

If you ever think you’re not getting the full answer from a friend who has cancer or a serious illness, this might give you somewhat of a clue to what’s on our mind, and why we often default to “fine” – even when we aren’t.

My hope is that this look inside my head will help you know where and when to press more or even step back.

How is your body?

Most often, I'm threadbare.

Most likely, I’m threadbare.

In my body, there is cancer. I will probably get a remission confirmation for CLL in my doctor’s office next week.

But there will still be the Other cancer, whether it’s early non-small cell lung cancer, or more likely, a Richter transformation of the Chronic Lymphocytic Lymphoma I already had to a Pulmonary Lymphoma manifestation of diffuse large B cell lymphoma.

I think.

All I really know for sure is that there’s a cancerous mass in my lung with high metabolic activity that responded to chemotherapy for a little while then got bigger again and is larger than 3 centimeters.

Because I’m so worried about the mass doing the flamenco in my chest, I usually go into that thought pattern, strangely enough, rather than taking stock of how I’m feeling in the immediate moment.

And it takes a couple of seconds to uncling from that worry.

Then I wonder if I should list my symptoms.

  • Achy, sore or in pain, almost always.
  • Feverish on occasion, more so lately.
  • Tired most often -should be having a nap, should not have answered the phone or text.

But I have to leave devices on in case I get a call that I can go to an appointment from one of my other doctors sooner than expected, which happens a lot more than you’d expect.

Or to quickly be able to summon help, which I need more often than I admit.

The question of how I am, tends to make me  believe you’re asking about my health. But my health isn’t only about how my body is.

How is your mind?

Faded. Trying to breadcrumb back to my original identity. Although I know it won't fit me.

Faded. Trying to breadcrumb back to my original identity. Although I know it won’t fit me.

Seized in worry.

Lost sometimes.

Still laughing at some inappropriate private joke with myself from five minutes ago, because why cry instead of laugh if you have a choice?

But often intensely, deeply worried.

When I was diagnosed with cancer in January of this year, my top two reactions were shock and relief.

Shock because even after three months of research and speculation, nothing can prepare you for the moment a doctor tells you that you have a potentially fatal disease. Even experience with the feeling that your body has betrayed you.

The sense of relief was from confirming that it wasn’t all in my head, and having a team of professionals ready to actually do something to help.

A team that fully took my opinions and research into consideration and was willing to discuss and debate my care choices with me like the grown over-40 woman I am, not like some petulant child that had no idea what she was talking about.

I had lived through almost two decades of doctors telling me my chronic pain conditions were in my head.

Or not serious enough to be treated.

Or that the only treatment was to be put on strong pain pills or that I should be on medications I didn’t want to take or that whatever treatment I researched was not for me, without even checking.

But I have techniques against worrying too much, and they seem to be bringing my worry time down from Always to one minute per hour.

Of course, that leads to my finances – which is most often responsible for that one minute.

How’s your … uh… money?

Ah the sordid topic of coin. It’s so impolite, so gauche, to talk about one’s financial situation.

No one ever says “how is your money?”

Well, almost no one. I had one great friend who had the presence of mind to ask and make me feel safe answering honestly, who then wordlessly sent me some relief via PayPal, for way more than the amount I was worried about.

I have learned how to ask myself how my money is and to ask other people for it, for the first time in my life without even the promise of anything in return. It’s really a lot harder than I ever thought it could be.

It’s caught up in my identity, my ability to make a living as a free human, from the exchange of my ideas for currencies of various sorts.

It never occurred to me that my simple basic welfare and worthiness was enough. It’s still a really hard idea to wrap one’s head around. The issue of money in life is deep. Some people think it’s the root of all evil. Even though the famous Bible verse says LOVE of money is the root of all evil.

It’s taboo to think about the thing that keeps us living indoors with food in our bellies and clothes on our backs.

So like you I rarely ask people how their financial situation is.

We rarely ask ourselves, outside of making sure we have enough or striving to make not enough stretch.

It’s a place where we’re a veritable nation of “fine” — until it’s too late. Some friends have tried to help me head that off at the pass with a fundraiser.

It has been a bumpy ride. Waking up every morning, trying to think of subtle ways to remind people that the fundraiser is still ongoing would be hard even if I was well.

Especially trying to do so without looking as desperate as you are that $25 more shows up today.

So you can convince yourself that everything will be okay during the upcoming time period when you may not be able to work at all.

The good news is that a few unexpectedly large contributions put us back on schedule. Then some problems with the crowdfunding site put us behind again, twice. But some unexpected generosity now has us a bit ahead of schedule again.

Most days are a roller coaster.

For the time being, the fear that seizes me from having spent through my life savings for the third time in the last decade, is abated. The struggle is far from over, but for the moment, things aren’t as critical as they were.

I might actually survive.

Which is yet another thing I’m thinking when you ask me how I am. But how do I answer that honestly and thoroughly without getting our connection wrong.

Forgive me for the hesitation.

A snapshot. A moment. Perhaps you can only be THIS honest, since how you are is about to change anyway.

A snapshot. A moment. Perhaps you can only be THIS honest, since how you are is about to change anyway.

The pause when you ask me how I am is from trying to figure out how much to reveal, how much is fair to share, where to start.

Whether I end up handing you a generic “fine” often has more to do with how long and deeply my thoughts are looping than how close we are, or how much time you have to really listen.

No matter what my answer is, do know, I’m sincerely interested in how YOU are.

Like many other people with chronic or life-threatening illnesses, other people’s good news makes me feel reconnected to the world.

I’m sad to hear your bad news, but it also makes me feel less alone- like I’m not the only person in the world with problems.

It also gives me the opportunity to be of help sometimes, in a period of my life when I often feel entirely helpless.

Now it’s your turn- tell me in the comments, or in private if you prefer: how are you?

2 thoughts on “How things are going. The struggle for polite honesty

  1. My aunt writes these really elegant messages to people. As a thank you, for a birthday, just because. I read this post and was so reminded of her. And, of course because of our family struggle with cancer that my aunt was at the front and center of with my uncle. Your words so put me there….in your head, in your heart, in your brain…to feel the mix of emotions from mortal fear, to relief, to worry, to laugh-crying.

    Also – sorry the fundraising site is glitchy and will circle back on that if need be – eeecccchhhh! One more thing.

    Thank you for sharing your journey. Somehow, it brings humanity back to the forefront.

    Xo,
    Kath

    • Hi Kathy,

      Thanks for taking the time to share your thoughts here. It felt rambly despite several edits & I almost didn’t publish it. It’s an honor to be compared to your aunt.

      As for GF- hey. Every high volume site has problems. I just wish they were more understanding of the position I’m in when I bring it up.

      Half the time either I don’t get an answer or the issue is long solved by the time they respond. But once no one could donate for four days! And one doesn’t want to get all pissy about a situation where people are being generous to you.

      It’s frustrating sometimes but you can’t go to a picnic and then focus all your attention on the one tiny pile of dog poo off in the corner! I mean they also wrote a feature blog post about me.

      Plus, it’s resolved as of now. So life moves on. I’m just grateful this is happening at all. If I had waited until I was sure I needed help, I’d be up the creek for sure. So thank you for getting it off the ground.

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