Turn and Face the Strange: Coping in the New Year


Changes

Was 2016 really as bad as we thought? It was a hell of a year. Just looking back at the cultural icons who died, the first massive shockwave for many of us was the death of David Bowie on January 10th. While we were still reeling from that, four days later, actor Alan Rickman died. Both were 69. And four days after that, Glenn Frye, co-founder of the Eagles, died at age 67. And that was just the beginning.

I am 62. These three artists not only contributed greatly to the music and films I’ve admired and enjoyed, but they were my peers in age, members of my generation. Their creative output spoke to how I felt about life, often helping me understand it. Meanwhile, I’m still getting used to the notion that I’m in my sixties. I don’t feel old, but I don’t feel young. I figure I’ll probably be around for a while. But who knows? Maybe not. The death of three peers in eight days tends to shake you up.

Of course, we all know how this continued. Some of the folks we lost in 2016 at least got to live to their eighties or nineties. Some, like Prince and George Michael, didn’t even make it to their sixties. And, in a two-fisted gut-punch, Carrie Fisher died at age 60 on December 27th, and her mother, Debbie Reynolds, died at age 84 the next day. You could be forgiven for thinking that 2016 was apparently bent on cutting a cruel, irreparable swath through our cultural lives.

So, yes, 2016 was just as sucky as we all thought it was. And that’s not even mentioning my more personal losses. Or politics.

Because I am 62, and have a long memory, and pay attention, I have for decades been reading and listening to news about the putative winner of our presidential election. And I must admit I’ve always thought he was a self-serving vulgarian. I have long been aware of his questionable business practices, his misogyny, his prejudices, his colossal bankruptcies, his shafting of thousands of contractors by not paying them for their work, the myriad lawsuits filed against him, his unfaithfulness to his former wives, his divorces, his execrable taste in interior design. He did nothing to change my opinion during the campaign. Indeed, he brought new meaning to the definition of cynicism. And apparently that cynicism was shared by enough of our fellow citizens to have gotten him elected. Or perhaps folks just weren’t paying attention to his history all these years. It’s an understatement to say I’m disappointed, but I can’t say I’m entirely surprised. The issue now is figuring out how to cope and what to do.

The Butterfly Effect

The day after the election, I was on a plane, flying to a conference whose purpose was to begin to thrash out some practical ways to help people with metastatic breast cancer deal with the collateral damage of living with the disease and its treatment. It was the perfect distraction and antidote to how I was feeling. Spending two days surrounded by a few dozen intelligent, passionate, articulate clinicians and advocates restored a lot of my faith in humanity. It was also a rare treat for me to take time off from work and spend a few days on the West Coast. I don’t get limitless time off, and I can rarely afford to travel whenever I want to every conference I’m interested in, so I appreciated this opportunity. When I got home, I napped, unpacked, and went back to my patients on Monday. At least I get paid to help people. That privilege has been especially helpful to my sanity these past several weeks, while I’ve tried to process the ramifications of this election.

Most of us can’t just quit our jobs and become full-time activists. But we can view all this as a wake-up call to learn more about how our government works and how to become perhaps better and more active citizens. There is a lot of information out there to help you figure out how to make your concerns heard. I have contacted my representatives on issues that matter to me, and have heard back from them. I’ve signed a few petitions, written emails, made phone calls and contributions to non-profits, subscribed to a few reasonably reliable media sources. If you wish the election turned out differently, here’s a link, from Patti Mulligan, with resources to help you figure out what you can do if you want to do something.

Mostly though, the challenge for many of us is how to get from one day to the next. And that’s where butterflies come in. The Butterfly Effect is the concept that even small actions can start a process that creates large changes down the road. It was initially coined in the realm of weather science. In popular culture, it’s come to be used by many to assert that there is a reason or an explanation for everything, but that is not it’s original meaning. Nor do I believe there is a reason for everything, because sometimes shit happens, like cancer for instance, and we don’t know why. Hence chaos theory. But in my own daily life, I interpret it to mean that every small act of kindness, consciousness, or goodness can make a small change for good in the world, at least for a moment. And that those acts can influence others to do likewise. And if we live our lives that way, deliberately acting from our best selves, those small changes can add up to bigger ones. So, it matters that you treat everyone with respect and kindness, even if you don’t like them, or agree with them. It also matters that you treat yourself with kindness and respect, and that may mean not permitting people to treat you like crap. Or permitting them to treat others like crap. Acting from your best self doesn’t mean being a doormat.

Of course, I’m a physical therapist, so I have to believe in the power of small, incremental actions. I have to believe that if my patients do a few simple exercises every day, they’ll eventually walk better. And, indeed, that is what happens, over and over. And I have to advocate for them when the healthcare system isn’t giving them something they need. Think about all the times when someone thanks you unexpectedly, or does something extra for you, how good it makes you feel. It can be something simple, like having the cashier at the store recognize you, smile, and ask how you are. It all matters. Most of the time, when you just smile at someone, you get a smile back. Smiles can be contagious. Kindness is contagious. Advocacy is contagious. That’s what I’ve experienced at least.

Sometimes I fail at this. I’m only human. I get frustrated at bad drivers like anyone else. It’s okay to feel frustrated. It’s even okay to curse. But we can choose not to then cut off the next person at the next intersection. We can feel and verbalize our frustrations, but we can choose not to take them out on someone else. We can pick our battles, and let go of the tangles we can’t fix.

It’s not easy. The world we humans have made is full of pain and misery and violence and hatred. But the people we have lost this year demonstrated that it is also full of art and music and talent and humor and goodness. And that those things may not fix everything, but they matter. We have to believe that they matter, and never let anyone talk us out of that belief.

I leave you with some perspective from David Bowie, from his song, Changes:

I watch the ripples change their size
But never leave the stream
Of warm impermanence
So the days float through my eyes
But still the days seem the same
And these children that you spit on
As they try to change their worlds
Are immune to your consultations
They’re quite aware of what they’re goin’ through
Ch-ch-ch-ch-changes
Turn and face the strange
Ch-ch-changes
Don’t tell them to grow up and out of it

pixelstats trackingpixel
Share

Metastatic Breast Cancer: Helping Us Help You


For two days at the end of next week, I will be attending a brain-storming conference to discuss ways to help mitigate the collateral damage experienced by people with metastatic breast cancer. This discussion will include patient advocates who have MBC, and patient advocates who have had non-metastatic breast cancer and are clinicians who treat cancer patients in our practices. As many of you already know, I belong to the latter category.

Some months ago, the Dr. Susan Love Research Foundation launched the Metastatic Breast Cancer Collateral Damage Project [MBCCD Project]. Initially, the project began by developing a survey to gather information about collateral damage from those who live with it. Then, clinicians like myself, who have had breast cancer and who treat patients with breast cancer, were asked to step forward and volunteer to help. Recently, the survey study was conducted, inviting people with MBC to describe the impact of MBC on their lives and provide details of all the types of collateral damage it has caused. A Health of Women (HOW) Study™ questionnaire was used to document this damage. Once the survey results were collected, DSLRF arranged for the conference I described above, and I was invited to participate.

Based on the survey results, an agenda has been drawn up to help guide those of us who will attend the conference. We will be meeting to review everything that has been shared by survey participants, and to work on developing concrete recommendations to improve the quality of life for people living with MBC. The goal is to come up with specific recommendations, based on our personal and clinical experience, and to share them widely.

I work as a physical therapist. Oncology rehab was one of my clinical internships in grad school. I have worked in many settings over the past twenty-five years, but for over a decade now, I have worked for a visiting nurse agency affiliated with a local hospital and healthcare system, providing physical therapy treatment in patients’ homes. I help all kinds of patients with all kinds of problems that often extend beyond the scope of physical therapy. That’s how it is in homecare. Both nurses and physical therapists serve as case managers for patients, which means that we need to ensure that our patients get help with all of their needs — medical, pharmacological, emotional, and financial. We do this by knowing when to bring in other clinicians who have specific expertise and by advocating for our patients with their physicians. We also have a palliative care team to help cancer patients and others with serious illnesses to manage pain and collateral damage of all kinds. I’m very lucky that I get to help advocate for and assist patients in such concrete ways. Believe me, when you treat someone in her home, you really see the impact that cancer has on a person’s energy, daily life, family, and finances in a way you cannot in any other setting. Having been a breast cancer patient myself really helps, too. Consequently, I feel that I have a lot to contribute to this next phase of the MBCCD Project. And, incidentally, I am looking forward to meeting folks in person whom I’ve only known in cyberspace, like Lori, who blogs at Regrounding. A wonderful perk!

I can tell you truly that the most important thing I do to be a good clinician, and a good friend, for that matter, is to listen. So, thank you to all those who completed the MBCCD survey. Thank you to my friends with MBC who have shared so many of their personal struggles with me and trusted me for advice, support and friendship. Thank you to my amazing patients who have taught me much more than I’ve taught them. And thank you to my blog readers. I want to invite anyone who reads this now to help me, to help us help you, by commenting here on the blog or on social media, by emailing me at kk@accidentalamazon.com, or by messaging me on Facebook or Twitter. The more we know and understand, the more and better help we can provide. I’m listening.

pixelstats trackingpixel
Share

The Misogyny and Deplorables* of Pinktober

The wrong kind of awareness.

It’s probably happened to all women. It recently happened to me when I made a homecare visit to a patient’s house, and she introduced me to her son. But the setting could be at the office or at a party. You are introduced to a man for the first time. The man doesn’t meet your eyes, doesn’t reach out to shake your hand, doesn’t say hello. Instead, he first rakes your body with his eyes to check out your legs, your breasts, your physique. It might be unconscious on his part, but he does it anyway. It might be entirely conscious, and when he finally does meet your eyes, they may show an approving leer or a dismissive sneer. You stand there and realize several things at once. You are aware of feeling uncomfortable. You know you’ve been judged, sized up, checked out, based entirely on how you look. Your personhood has been violated and dismissed. You doubt that this man will take anything you say seriously. Whatever redeeming qualities he may possess, you know that, in a fundamental way, he’s acting the part programmed by our culture, which is to act like a sexist jerk, just like the hundreds of other sexist jerks you’ve already met in your life over the years. What is unlikely is that you will say something. You’re used to it, too used to it. You’re busy, you have other things to think about, you have work to do. You try to ignore it and move on. But you store the encounter in that repository of shame, anger, fear, and frustration that every woman lives with from the day she is old enough to be aware of the threat that such encounters represent.

And these encounters are just the tip of the iceberg. In the past several weeks, we’ve all been made painfully aware that the mindset of rape culture reaches all the way from our courts to our presidential election. But its reality is hardly new. Back in November of last year, writer Gretchen Kelly wrote about it in the Huffington Post. She described the ugly truth, that “this is what it means to be a woman. We are sexualized before we even understand what that means. We develop into women while our minds are still innocent. We get stares and comments before we can even drive. From adult men.[…] We learn at an early age, that to confront every situation that makes us squirm is to possibly put ourselves in danger.”

Recently, a 2005 recording was released in which the GOP presidential candidate demonstrated the depths of his sexist depravity by asserting his belief that he was entitled to engage in sexual assault. Following this, Kelly Oxford invited women to tweet their first experience of sexual assault. A day later, she reported that she’d had over 9.7 million Twitter responses from women, many of whom saying they had more than one story to tell.

What does this have to do with breast cancer awareness?

For eight years, I’ve been speaking out in this blog not only about the corporate merchandising that exploits breast cancer, but also about the sexualizing, objectifying slogans, games, products, and so-called awareness campaigns that reduce a deadly, incurable disease to a prurient party about breasts. And for eight years, many of us can attest only too well that, despite our best efforts, these tone-deaf endeavors continue, and that many men and women, including some who have experienced breast cancer, fail to understand why we object to this ceaseless crap. “Lighten up,” we are told.

And why do we object to it? Why can’t we just “lighten up” and brush it off? Because, people, it’s part of the same culture in which men think they have a right to leer at our body parts and disregard our very existence. It’s part of the culture that produced a presidential candidate who bragged that his star status permits him to walk up to strange women and “Grab them by the pussy.” It’s part of the culture that obscures genuine awareness of breast cancer with exhortations to save the ta-tas, the hooters, the boobies, everything but saving the women and men who will die of this disease when it metastasizes.

It’s part of the culture in which the corporate donors of possibly the best-known breast cancer fundraising organization in this country evidently think there’s nothing wrong with raising money for breast cancer ‘awareness’ by selling sex toys, or by inviting women to show up at nightclubs in pink bikinis. It’s the culture in which that same organization has been loathe to revise the happy, pink image of survival it orchestrates at its fundraising events by including those who will ultimately not survive. And when that organization does finally invite someone with metastatic breast cancer to speak at one of these events, she is advised beforehand that “parts of my speech might ‘terrify’ the newly diagnosed in attendance and those sections should be deleted.”

But we should be terrified. Indeed, we are terrified. When 113 women and men die every day in this country of metastatic breast cancer, when the number of these deaths each year has not appreciably changed in decades, we ought as a society to be not only terrified, but ashamed.

We ought to be ashamed of a culture in which a judge gives a rapist a six-month sentence, stating he was concerned about the impact that prison would have on a man who assaulted an unconscious woman, but not evidently concerned about the impact that being raped would have on his victim. In light of that, perhaps we ought not to be surprised that this same culture can claim that breast cancer is the “sexy” cancer; that people can regard mastectomy and reconstructive surgery as merely “a free boob job;” that a pitiful, single-digit percentage of breast cancer research funding is spent on metastatic breast cancer, when up to 30% of those who are diagnosed with early breast cancer will develop metastases.

But we really must, by now, realize that this is unacceptable. It is abhorrent to define the disease that kills over 40,000 people each year entirely by the breasts in which it may first appear. We must acknowledge that trivializing breast cancer with campaigns and slogans that objectify women is an insidiously cruel, demeaning, perverse form of misogyny. And that we are obliged to reject it, as loudly as we can, as long as it takes to change it.

*Go the this link for the origin of the phrase, “basket of deplorables.”

pixelstats trackingpixel
Share

The Pinktober Curse: Wake Me Up When It’s Over

On October 1st, the small town I live in is having an outdoor celebration called RiverFest. I live in the Ocean State, but it could also be called the River State. Or even the Pond State. In any case, we have a river called the Saugatucket, with a great walking bridge over it in the town center. RiverFest is basically a block party, with food, music and general mingling. One of its special features will be a thing called River Fire, in which several cauldrons of fuel will be floated along the Saugatucket River and lit after dark, while music plays in the background. I couldn’t find a good photo, but it’s a spin-off of Water Fire, an event started years ago on the Providence River by a former mayor. Here’s a photo of a previous Water Fire, Providence, from MI Business Mag.

We don’t have gondolas at ours, but it’s really magical and even spiritual in an elemental way that’s hard to describe. I plan to be there. And pretend Pinktober isn’t happening.

After that, I wouldn’t mind being plugged into an IV of Versed for the rest of the month and beyond, as long as I were woken up in time to vote in the Presidential Election. Then, I’d want to be sedated again for twenty-four hours, gently awakened when the results were in, and, depending on which way it goes, either provided with a bottle of champagne or another dose of Versed.

I’ve been objecting vehemently to Pinktober for years now. And I’m tired. I’m tired of the trivializing games, the sexualizing slogans that focus on saving body parts instead of lives, the lack of focus on research and on the unacceptable death toll which remains largely unchanged. It’s all so SSDD (same shit, different day). A case in point is that Komen has launched another tone-deaf campaign this year. It’s called More Than Pink, and it physically sickens me to provide the link. Should be called “Just More Bullshit.” The headline declares that Komen has defined a new goal to “cut current breast cancer deaths in half.” I guess cutting the other half of current breast cancer deaths doesn’t count. I’ve read the press report about three times now, and I still can’t figure out what exactly Komen plans to do to accomplish this remarkably callous goal.

I first learned of Komen’s campaign yesterday, in a Facebook post by my friend Lara, who blogs at Get Up Swinging. Of note is that Komen has actually trademarked the phrase “More Than Pink,” which was, in fact, first coined by a cancer activist group called Real Cancer Awareness in 2013, whose mission is to counteract the pink bullshit by promoting some genuine awareness of cancer — all cancer. To that end, they put together some amazing videos, which you can watch here and here. So, not only is Komen klueless once again, but they’ve also ripped off someone else’s catch phrase once again. And they actually pay a bunch of marketing people an obscene amount of money to do this. They must hire them from another planet. Or maybe they’re zombies. Today, another friend, Kelli Parker, summed up Komen’s idiocy nicely with a Facebook post headed, “In related news, American Red Cross announces bold new goal to START helping disaster victims.”

Fortunately, there are a lot of folks in our social media community who are not zombies. One effort to start Pinktober on some kind of useful footing will occur on October 1st. It’s called #BreastCancerRealityCheck, and it invites all of us to flood social media with examples of what real awareness comprises, in order to leaven the stupid pink party and merchandising extravaganza that Pinktober has become. Please click on the link and add your support.

In the meantime, I’ve run out of energy for more words, but I’ve been spending some quality time with Photoshop. Here is one of the results. Feel free to share it by using this link. Or click on the meme itself. Hope it makes you laugh. We could all use a laugh, even if it’s a sardonic one.
Pinktober-Curse

pixelstats trackingpixel
Share