Monday, May 9, 2022

When Gaslighting Equals Cancer

Five days ago, I had a colon resection to remove a cancerous tumor. Translation: I had colon cancer. Having found out at the end of March and gotten the surgery by the beginning of May, by modern standards I moved at the speed of light, even if the wait felt like eternity at the time.

The wait wasn't eternal, but the time it took for the cancer to develop was, of course, much longer than six weeks. One doctor says four years, another says ten. Based on my symptoms, I'm going with the latter.

But how, you might ask, could I have missed it for so long? Good question. Because I didn't miss any of the symptoms, and I brought them up to my doctor at the time. So the answer is that I didn't miss it, but she did.

About a decade ago, my digestive system started being erratic. I brought it up to my doctor, who didn't have any special insight. Frustrated, I did some internet "research" and thought my symptoms fit Irritable Bowel Syndrome. When I told my doctor that I thought I had IBS, she shrugged and said that if I thought I had it, then I probably did. Okay then. Only thing is that there's no treatment for IBS, so the shrug fit.

I was also experiencing aches and pains as well as fatigue intermittently. When I brought it up to my doctor, she said the primary reason people would have those symptoms was because of depression. I really didn't know what to say because I wasn't depressed. Very stressed with life issues I've talked about in this space, but not depressed.

I was, however, suffering from Post Traumatic Stress Disorder, and when some of those symptoms became unbearable, she prescribed me a medication that was known to cause digestive issues, or, in my case, exacerbate pre-existing issues. When I brought it up, she said that sometimes digestive issues were associated with mood disorders, so this might end up resolving my issues eventually. Spoiler alert: it didn't, and I stopped taking the medication after less than three years.

Low energy, aches and pains, digestive problems, and life issues -- but I was still as active as I could be. I also ate a mostly vegan, gluten-free diet (and when I wasn't vegan, I was vegetarian), never smoked anything, and drank sparingly if at all (and for the last few years, I've drank nothing other than kombucha -- and I don't even drink that anymore). In other words, my only risk factor for colon cancer was my weight, which, oddly, seemed to accumulate around the time all of these symptoms began. Perhaps you've guessed by now that my doctor was laser-focused on THAT, to the point where I couldn't come in for something like an ear ache without her having me weighed. 

You would think that since she was so obsessed with my weight and since I had complained about all of those other symptoms she might have said at some point, hmm, maybe we should do a colonoscopy. And I believe she did -- once. But she suggested it in such a way as to make it sound unattractive, and I declined. Forgive me for thinking that since my symptoms persisted, her suggestion should have as well, especially since she was ALL OVER ME when I had a relatively rare symptom of breast cancer. She would not accept a good answer, and I finally ended up with a surgeon. The culprit: a traumatized milk duct (which maybe shouldn't be a surprise in someone who nursed four babies past the age of two). When she wanted to aggressively pay attention to something, she could. 

To be fair, she wasn't the only person in the medical field who didn't take me seriously. When my husband dragged me to the ER in 2018 because of chest pains and feeling like I was going to pass out, one of the ER residents used the word "unimpressed" to describe his evaluation of my EKG and overall presentation -- until a test showed that I had elevated levels of troponin. Credit to my cardiologist (not the resident): he aggressively chased theories and tests, but when my PET scans came back clean, he threw up his hands. It was a mystery, but as long as I kept exercising, I should be able to prevent it (never mind that the two episodes that required hospitalization were set off by working out at the gym...).

Do people get why I did NOT want to go to the doctor after a certain point? Because while no one said they thought I was crazy, it's pretty easy to tell when people aren't taking you seriously.

My theory to explain everything was Chronic Fatigue Syndrome, because that was a great explanation for why sometimes I was just so god damned drained sometimes. It was also, like IBS, something that was real (in other words, I wasn't crazy), but no harm, no foul, since the medical profession couldn't treat it anyway. Oddly, this didn't do anything to make me feel like anyone was taking me more seriously.

I lucked out a few years ago when my previous doctor left the hospital for a concierge service and was replaced by a really attentive doctor who -- wait for it -- listened to what was going on with me. Perhaps emboldened by that, when my symptoms got worse I let him know, and he suggested a colonoscopy, but it was my choice. When they got much worse, I felt like I could take him up on it. Great!

...Only I still managed to meet another doctor between the scheduling and the actual procedure who implied that my symptoms were indicative of something much less serious. That interaction was exhausting -- did I mention that I've been exhausted for a decade? -- to the point that I didn't bring up the ear pain that turned out to be an infection. Symptoms of that infection are still plaguing me, but I couldn't bear to stay in that office for one more minute.

When I saw my current doctor today, I brought my husband, more to keep me from going off about how his predecessors had failed me. But my husband couldn't restrain himself from pointing out to my doctor that this situation affected not just me but also our family. And...he's right. It has impacted every aspect of my family's life, however much I've tried to minimize the impact. For more than half of their life, my sons have seen me as someone whose energy levels are undependable (but who usually pushes through anyway). Managing this condition, completely in the dark, has sapped not just my energy but my mental faculties. We all obsess about food, but my ever changing list of things that I could and could not have was causing me to do mental gymnastics that no one could keep up with. And while no, sorry, I haven't been depressed, I realize I've seen everything through a pessimistic lens. Dealing with low-level chronic pain -- and exhaustion -- is going to do that to you. 

Even with pain from the laparoscopic incision, I'm sleeping better than I have in years; no more waking up with a mild sense of panic in the middle of the night and not being able to go back to sleep for two hours, if at all. I am starting to feel like maybe, just maybe, this might be the beginning of a good chapter of my life. Let's see.

Deb in the City

Wednesday, March 2, 2022

The questionable wisdom of the sleep-deprived

Some random thoughts as I deal with the second day this week of four hours of sleep (though, mercifully, not consecutive):

  • Boston's hours might give you the impression that we're nothing more than a showy bedroom community. We're most reliably available between the hours of 8 AM and 8 PM, though only on weekdays. Saturdays, so it has been decreed, don't seem to start until 9 AM, and Sundays don't start until 10 AM if you're lucky. Don't believe me? Try finding a good place to get a non-caffeinated beverage while walking around on a Sunday morning before 8 AM. Never have I missed New York City so much.
  • Given the number of ways in which women who aren't white (I loathe "of color" in general -- by which standard? Right, we all know. So let's just cut to the chase and say "not white".) are told that they aren't good enough, the wonder isn't that we have panic attacks, it's that we don't have them every single day.
  • No one has made me wish for the existence of Hell this much since Bashar al-Assad, the Butcher of Syria, but Vladimir Putin should get his own ring within the worst ring. But also, everyone who only cares about Syria now because of what's happening in Ukraine, if you're under the age of 25, what is the matter with you?
  • I searched like a demon to find a history book I could use for my older-middle school/younger-high school students that would be both age-appropriate and not be Eurocentric. I failed to find anything comprehensive, so we read shorter books on other topics and used a survey textbook for what would have been their first year of high school. My husband and I are now reading Tamim Ansary's Destiny Disrupted, which is explicitly from the point of view of the Islamic world. Great...but not perfect. How I wish there was a version of Power and Plenty that covered cultural/political milestones and/or was available for older teens.
  • However sleepy Boston is, I pine for my walks, especially as various family members' anxiety makes those difficult to get. It's easy for me to sink into bitterness (especially when I'm sleep-deprived), but I realized a few days ago how much I will miss having children who want me around. Boston will be there (I mean, I think...), so long, daily walks can wait. In the meantime, I can workout at home.
  • Much as I've walked away from my identity as a foodie, walking into pastry shops to buy things for the members of my family who can eat wheat got to me. I've been baking a number of things from Erin McKenna's cookbooks. Brownies are still my favorite, but my husband likes cupcakes (both of us can live without chocolate chip cookies, although he has a soft spot for oatmeal cookies -- no accounting for taste). I'm loving pumpernickel bread all over again (obviously, best with vegan cream cheese and strawberry jam, but you knew that), but I really want to try challah because it would be nice to have that for Fridays again. Because really this whole baking jag was set off by my desire to avoid paying $39 for a challah (plus shipping). Now, can anyone tell me where I can find a good pan?
  • How I wish I could drink tea again. (Did I mention that I'm sleep-deprived?)

Deb in the City

Sunday, December 26, 2021

The Secret of Time Management

I won't keep you in suspense: it's saying No. Working smarter not harder is going to get you only so far, and if we're honest, a lot of smart working is saying no to certain things anyway. 

But how does one say No?

The curse of the era we live in is that we believe there is so much that we should say Yes to. The promise of the World Wide Web is just that: an interconnected world. But the world we are given easy access to is just so much garbage most of the time. It's a slightly more heightened version of the one available on television, which is itself a dumbed down version of the one available in books. A richer world is out there, but it's hidden in plain sight beneath the shiny glow of the baubles displayed by the internet.

I bring this up because, for the umpteenth time, I've listened in on a conversation in which people are concerned with Time Management (as well as the latest in gaming and television), and the intensity of these conversations might convince someone that distraction -- or Attention Deficit Disorder -- had been invented in the last two decades. But that is not true. What might be true is that the level of distraction has ratcheted up past what anyone could imagine.

Or couldn't they? Actually, haven't people been warning us about what mass media could do for decades? Neil Postman warned us in Amusing Ourselves to Death that Orwell's nightmare of Big Brother was irrelevant in a civilization that had chosen to make a god out of Entertainment; Carl Sagan saw that as our technology became more complex, many of us would backslide into superstition and revel in our ignorance; and Kurt Vonnegut described a society that was going to disguise the fact that it wasn't allowed to talk about substance by screaming about whatever was still left to us.

As far-seeing -- let's even call them visionary -- as these authors were, I don't think even they saw the sleight of hand that was going to be pulled on us in the twenty-first century. The usage of our modern technology -- small enough to fit into your pocket, more powerful than the Manhattan Project scientists could dream of -- gives us the illusion that we are participating in this movement called Technological Progress while we are, in fact, being commodified. We think we are using our technology to be more connected, but really we are connecting ourselves to a marketplace that listens into what we are already interested in and, like the best marketers in retail and politics, uses that information to convince us to buy what's already out there. We think we are choosing to watch and play the most cutting edge entertainment offered by Hollywood and Silicon Valley, but really many of us can't say no because we are addicted to the prospect of being entertained. 

Raj Patel, who has written more recently, had the great insight that the opposite of choice isn't coercion but instinct: if we have been participating in a marketplace from before the time we could consent -- before we were even born, in many instances -- our very "gut feelings" have been shaped to accommodate market values. Every other kind of value -- moral, political, intellectual -- will be indulged only to the point where it doesn't inconvenience said market. 

If you don't feel in control of your time -- and the life that it is filled with -- congratulations for realizing something that many are not yet able to see. You are not in control of your time because you are not in control of your attention. You cannot say No when you hear a demand, not a question.

This is a question

When you are being given thirty-nine different versions of chips in the snack aisle, you don't have thirty-nine options, but two: buy the chips, or walk away. (If one option has thirty-nine different varieties and the other has only one, what is the math weighted toward once you're in that aisle?) When you have available over fifty services for streaming in the United States, again, you really have two options: watch a program on one of the services, or walk away. (When each option has hundreds of programs per service, and there isn't a lot of drama inherent in walking away, what is the math weighted toward once you open up your device?)

Even those of us in a Community Supported Agriculture program will have to walk into a supermarket at some point, and once there it's difficult to avoid the snack aisle. By the same token, even those of us who are committed to spending as little time as possible on screens have to open them at some points, and once there it's difficult to avoid being plagued by ads and other "reminders" pointing you to entertainment. What is the solution? I don't know. But what I do know is that the more we remind ourselves that we are being asked, not told, we can start to say No more frequently.

Deb in the City

Tuesday, December 14, 2021

What's Making Me Better

A couple of health setbacks in the last month were exhausting enough that I decided to, you know, listen to my body and take it easy. (I hate taking it easy.) So I didn't tax myself with anything more strenuous than walking for about thirty minutes or forty-ish minutes of qigong. Shockingly, I feel better, and I think I got the message from my body that, just maybe, heavy weights aren't my thing, and if I want my epic walks back, I'm going to have to earn them. So now I can walk about forty minutes per day, and we'll go from there.

Along the same lines, but not nearly as serious, I think herbs are not my friend. Please, not those herbs, which have never been my thing for numerous reasons that make me a complete outlier in our civilization. No, I mean medicinal herbs that grow in my garden. I mean echinacea, which people I know have been going on about for most of my adult life. We grow some in my community garden plot, and my plot-mate dried a slew and gave me some to take home. After two tries with the tea in the morning that I thought might be bothering my stomach, I decided to incorporate it into a ginger-bug based soda. I lasted three or four days before I realized that the increasingly painful cramping of my digestive organs was not being helped by the echinacea. And then, oh yeah, my kidneys were sore, which isn't something that happens to me a lot. 

I hate when people talk about "detoxing", but I decided that I was going to confine myself to fruits, vegetables, and nuts until I felt better (basically, a vegan "high raw" diet). And you know what? I do feel better -- better than I have in a few years. So I'm going to stick with this until/unless it feels like it's not enough, and then we'll reassess from there. But I feel...good.

Just say no

The cure, apparently, for what ails me

I'm finding it more and more that I just can't listen to the news. No, I do not mean because it's traumatizing -- did I mention that I'm a member of Gen X and thus I grew up being threatened by nuclear war every other month? -- but because it just seems so dumbed down. I think, and I'm horrified by this thought, that the news is being dumbed down in order to appeal to younger audiences, who apparently aren't being given enough credit to be able to keep up and learn something. (FYI, I'm talking about NPR and Boston's NPR affiliates.) It's one thing for social media to be a younger person's game -- and it is -- it's another thing for the news to be so. So far, the Economist is still doing a pretty good job of being a site that caters to "adult audiences", but we'll see how that progresses in the next few years. Oh right -- I was also watching a lot of NHK Newsline until one of the anchors smugly reported on the failure of South Korea's rocket -- sorry, you want to bring down the tension, or not? -- and Arirang News has some interesting perspectives on foreign affairs.

What's helping me now is my reading, and as I get older I find that to be increasingly the case. I finished Jade Legacy, the final book in Fonda Lee's Green Bone Saga, and I'm kind of ruined now for a lot of other fiction. I'm utterly in awe of someone who can write action scenes that make me feel like I'm watching a movie, organizational and political dynamics, AND intimate portraits of the members of an imperfect family. Needless to say, that's not everyone. Fortunately, there's The Veiled Throne, the third book in Ken Liu's quartet (?), The Dandelion Dynasty. It's 982 pages, because of course it is, but I'm a sixth of the way through and I haven't felt the passage of time. If Fonda Lee can immerse you in an organization with a kaleidoscopic perspective, Liu can show you how the world is built, including everything from the harnessing of silk's static electricity and the building of airships to the dueling philosophical underpinnings of a civilization. If it's not as intimate, it's because the canvas he has to work with is so vast -- and amazing. 

As far as non-fiction, the last month or so was kind of rough. Most difficult title was Not "A Nation of Immigrants" by Roxanne Dunbar-Ortiz. Dunbar-Ortiz makes the work of Ibram X. Kendi and Erika Lee feel like a party (and boy, am I never going to look at the Hamilton fans the same way again). Not perfect -- don't get me started on Syria -- but mostly very good. African Europeans: An Untold History by Olivette Otele was a little less wrenching, but not significantly so. I learned a number of things -- one of the de Medici's whose descendants still have some power was in, fact, an African European, as were Septimus Severus and Alexander Pushkin -- but I couldn't help but walk away feeling like, gee, maybe the United States isn't so much worse than Europe. Jesus, Finland, keep your educational system if you're so awfully, extra-special racist, okay? With all that behind me, Stalin's War: A New History of World War II by Sean McMeekin is a relative breeze. I might not be completely convinced of his thesis yet, but it is worthwhile to read about World War II through the Soviet lens (and let's admit that Stalin- and Mao-apologists have persisted much longer than they should have).

No, really -- just say no

My writing continues -- I swear to all the deities of humanity that I will not only finish drafting this, I will also edit it! Getting installment eleven done was a huge confidence booster, and it made getting through installment twelve easier. I am currently in the middle of installment thirteen, and this is where blood touches metal, literally and figuratively. I'm excited because it's here that everything starts escalating and really can't be stopped anymore. And like all writers, I love being on a runaway train!

What's really keeping me sane? Playing with differential equations and studying chemistry in the early morning hours. There, I said it. Now you all know what a nerd I am. (It's not all crazy fantasy fandoms, right?)

Okay -- off to another smoothie and then I catch up on Taxi Driver, the Korean (of course) series -- more on the other k-dramas and k-movies later.

Deb in the City




Monday, August 23, 2021

Dreams, Daylight, and Rooms (Poem)

I used to have a golden dream

I retreated to for relief,

For belief

Once -- maybe twice --

I saw stars in a darkened sky

I used to believe in things like dreams, and stars,

And skies

Perhaps I've traded 

Promises of the night

For the fragile realities of daytime?

The green of leaves

The explosion of flowers

The sturdiness of living wood,

The harbingers of the living world

There is glory in these,

No doubt

And having been in greying rooms

That were just here, just now

Which required dreams to live through

I am grateful for fragility,

No doubt

But shouldn't a life

-- Real and full --

Have day and night,

Dreams, stars, and sunlight?

Perhaps -- perhaps

I need a different dream

Before I can open my eyes

In this other darkened room

Friday, August 20, 2021

A two-dimensional river (Poem)

On the dock by the river

A pattern of criss cross

As good as two dimensions

Are going to get

The current pushed aside

By another force

Is this not

What real life looks like?

Bordered by rocks and lily pads

Stagnant batches in the middle

Lost in the details

Of the side show --

Wishing for "smooth" 

-- Whatever that means --

Then wondering why it seems

To push by 

Too fast

On occasion, a wonder --

A funnel, a swirl, a vortex --

Captivating to contemplate,

A window into the third dimension

-- But ultimately,

Only one direction,

And that is down

A reminder to master the flow of the two

Before we try to plumb

The mysteries of the third

Wednesday, August 18, 2021

Wishing at sea (Poem)

Sitting by the breezy sea

Unlike most wishes,

This one comes true

Is that, perhaps,

Why we love the sea?

We know what it can give us

And what it can do

And we know that,

In its own way,

It makes everything else

A little better

Is it the taste and smell of salt?

On the most humid of days

Does it feel a little less heavy

Because instead of moisture

We feel salt giving us a hug?

Is it the sounds?

Waves against rocks or stones

Birds protesting

The escape of food?

We know we are not alone

Or at least

We can believe it

Is it the sight of everything mundane

Suddenly become majestic?

The grey of water

Is now sunlit silver

The blue of sky

Reflecting back a little bit

Of its own glory

The whiteness of clouds

A little fuller

Now that they

Are closer to their home

Skyline meets sea-line on the horizon

Perhaps everything is coming home to itself

This wish,

Unlike most,

Comes true at sea