So, the new European GDPR privacy protection law took effect today.
I support the aim of it, and don’t really know enough to have an opinion on the specifics (Barlow, where are you when I need you?).
The law mandates it be significantly more “user friendly” than the 87 page long lawyer language stuff we’ve all grown accustomed to clicking as “read and accepted” in order to do damned near anything on line, though I confess I still find the available boilerplate to be pretty snooze inducing.
And you can rest assured that if/when I elect to add any new bells and whistles on this site that impact the data I collect on you, how long I keep it, and what other entities I may share it with, you will be advised and have the ability to opt out.
NOTE for regular readers: As you know, I avoid the overtly political here, reserving that sort of traffic for my Twitter and Facebook accounts. The avowed purpose of this blog is to honor my medical diagnosis and do what I can to “download” whatever experience and—dare I say?—wisdom I’ve accumulated before my run here is finished.
But here’s what happened. A young man from Rockford, illinois who calls himself Jimmy B.O.A. posted the following Tweet, which sparked an exceptionally interesting comment thread (Jimmy clearly has high quality followers). I wanted to join in, but quickly realized my remarks would extend too far beyond the 240 character limit to even build a thread. Thus, a post here which I can link in the comments.
And besides (he adds in his best self-justifying voice), this isn’t about a “news of the day” political issue. It does speak to a piece of who I am which, I submit, gets it past my self-imposed “no politics” rule.
First, Jimmy’s Tweet:
POC can fight against racism until the death of them. Shit will never change, until the minute good “White Folks” speak up, and condemn each and every person that commits “Racial acts” against people that doesn’t look like them.
You. Must. Not. Spare. A. Racists. Feelings.
Let’s set context first, OK? I’m an old white dude, a bleeding edge boomer specifically. And I’ve been speaking up and speaking out my entire life. Attended my first civil rights march when I was, not sure now, either 12 or 13 years old. Was involved in anti-war activities and efforts to support UFWOC (later UFW) by the time I was a freshman in high school. Et cetera, et cetera. So, I’ve “been to the barricades” many times, and I’ve never stopped advocating for what seems right to me.
And I’m grateful to Jimmy for launching this thread. It has kicked off some interesting and useful conversation (something that seems a rarity rather than the rule much of the time on Twitter).
I absolutely concur. Nothing changes unless and until those standing in the way of change are challenged and called out. One of the advantages of being my age is that I have seen this play out time and time again on any number of specific issues over the decades. Barack Obama and Dr. King were right about the arc bending toward justice, but it’s a long arc and it needs our help along the way.
Need to say though, that as I have continued to “do the right thing” as best I can, I have had to learn a lot of new stuff over the years. And a lot of that has to do with privilege. There was a time it all seemed pretty simple to me (if a little risky at times). When I saw something that seemed wrong, my job was to stand up and speak out. That remains my guiding policy, but in recent years something began to happen that confused and disturbed me at first.
And I’ve seen some folks post up about it in this thread. Other white folks whose feels got bruised when they tried to speak out and someone challenged them (sometimes caustically) on their standing to discuss the issue.
See, I’ve come to believe that confliction (a lot of it anyway) is all about privilege. And I’m realizing one of the most pernicious things about privilege is how difficult it can be to recognize when you’ve enjoyed it your entire life.
In today’s context, now that someone has invented and defined the term “ally,” it just won’t work any more for me to roll up and start white mansplaining to folks who are marginalized and disempowered in one way or another howIthink they “should” act to be most effective (let alone how they should feel).
Because I don’t know what I don’t know. Oh, yeah. I’ve spent periods of my life impoverished. I have more than a passing acquaintance with alcoholism and drug addiction. I’ve seen the inside of jail cells for less than noble reasons, lived in “the inner city,” and on and on. But when all is said and done, I remain a white male and therefore, by default, less vulnerable and exposed than many others.
When in discussions—especially discussions about “resistance” of one sort or another, but really discussions of any sort with POC, women, LGBTQ+, and other friends and associates I love, respect, and want to support, I’ve learned I have to listen before I speak. To stay open and receptive. To stop and carefully consider when someone tells me to “check my privilege.” Then, if I still can’t see it, to ask for help.
Yes, it can be uncomfortable at times. Especially when those challenges land in a way that feels like my intentions, motives, or sincerity are being questioned. But I’m finding that beyond the discomfort there is important stuff for me to learn and understand. About myself, and about the people I want to support.
Also, I believe it’s damned important that the conversation has been elevated to the place where privilege is on the table. The fact that certain members of that dwindling dominant white male culture feel so threatened and put-upon by voices for change (and are completely blind to the absurdity of claiming they are somehow “victims of discrimination”) speaks to that importance.
So, yeah. I will continue to speak up and call out my cis male white brethren whenever and wherever necessary. I’ll also participate and, if it seems appropriate, offer my input and opinions to my sisters and brothers in the struggle; but I will do my best to do so with humility, an open heart and mind, and the understanding that it’s not my job to be the lead sled dog.
Because several folks have asked recently (and I thank you for your interest and concern), it appears it’s time for a progress report / update.
I had bloodwork done last week, and got an email from the oncologist on Tuesday advising that my “PSA remains stable .”
So apparently the assumption, based on my numbers, is that the cancer has not significantly metastasized yet, and is still getting its little cellular brain wrapped around the fact that we added Casadex to the mix (I’m also on a schedule of injections of Lupron, which is time-released into my body — how much detail on this stuff do you really want?).
That’s reassuring because I’ve noticed something about myself, and how I’m processing all this. Despite the fact that, as we’ve discussed before, I feel like I’m “in a pretty good place” about the fact we’re working our way through the late innings here, there is a part of me that remains pretty emotionally invested in just how things are going, and is rooting pretty hard at this point for this to take a while to play out.
And, as a result of that, I’m a little “over-vigilant” about relatively subtle shifts in things like when and how I fatigue, my overall pain level — and any new or unexpected spikes in same, along with other new manifestations of aspects of how I am in the world that might be indicative of something.*
At any rate, things remain dandy (all things considered) for now.
Working on some exciting projects with Yoshimi that I don’t have permission to talk about yet, but I think it’s going to be very cool.
We’re still in the process of getting ready for what I’m calling “The Last Great Road Trip” this Fall. At some point I expect I’ll get all self-indulgent and bore you with extensive details of the plans. We’ve been saving up for this since long before I got my diagnosis upgrade last summer. And yes, if you have spare change you’d like to toss in the pot, all support is welcome. Here’s the GoFundMe for that.
One other thing I should make note of, since we’re here talking about prostate cancer. If you’ve been keeping score at home (or, perhaps you actually read the “set up” backgrounder the first time you came here) you know I’ve been living with prostate cancer for 18 years now, and only recently have the medicos finally stood me up against the wall and declared me “advanced,” and therefore a short-timer.
Well, as a result of that I’m always interested in who else is a member of our large, and involuntary “Big C Club.” I count myself lucky, indeed, that I’m able to play the role of Trail Guide from time to time when somebody I know has that initial diagnosis dropped on their head.
No matter who you are, or what the specifics of your diagnosis and prognosis, my observation is that it always seems to rattle us when “The C Word” gets tossed into our lives. It’s a different country out here, and it can be damned helpful to have somebody to hang with, especially early days, who knows the lay of the land a bit.
In that regard, I rode along with a friend and his wife last week to be the “extra set of ears” and, if necessary, advocate at his initial consult with the radiology oncology Doc (he was still in the process of learning about his options and deciding if getting sliced and diced or nuked looked better for him).
A couple cool things happened on that trip. First, while we sat in the waiting room before being called in for our appointment, an old and dear friend and her husband emerged from down the hall. I recognized that “I’m keeping a good front up but my world just imploded and I’m scared as shit” look on her face. As he went to the desk to take care of whatever business was needed with the front office staff she hurried over and asked “what are you doing here?”
I quickly gestured to Ed and replied “I’m just a ride-along buddy today, what’s up with you guys?” This radiology oncology clinic treats all sorts of cancers, not just prostate, so I knew it might be any number of things.
She quickly gave me the bare bones of her husbands situation, which sounds like it’s gonna be no fun, but survivable, and I let her know I’m glad to be available to either or both of ’em to be “that guy” you talk it out with.
It’s such a privilege to be able to offer that unquestioning support. I find these days that the “connectedness” to my fellow humans has become one of the things I’ve come to value the most in this season of my life. So grateful when chances to live out that conviction present themselves.
Now here’s the other interesting thing: This is the same practice where I turned up every freaking morning for two months to get zapped with targeted external beam radiation 18 years ago. And when we were called back for our consult the Doctor looked at me for a minute or two and said “I know you!”
Yup. He swore up and down that, nearly two decades (and god nose how many patients later) he still remembered treating me. Of course, where I go in my head is that “must have been even more of a PITA than I realized” place. But I could see our quick exchange did a lot to boost the comfort and confidence of my friend and his wife, who are still in those early stages when the rational part of your brain is trying to settle down the emotional side, which is seriously freaked out.
So, nice piece of serendipity. Well played, Universe.
One final point about my membership in our huge Involuntary Club. I’m always interested when another New Member arrives at our clubhouse. Thus, I found this video that posted on the internet today of note. Perhaps you will as well.
And that’s about it from here for tonight. As you know, it is not my intention here to wallow in matters medical, but I reckon the occasional update for the interested is a reasonable use of the forum.
*For instance: I am, at the moment, in the midst of a persistent bout with vertigo. Now that’s something I have never experienced in my life, but which has presented itself several times over the last year or so for periods ranging from a couple hours to a day and a half or so. It’s not a big deal. I Googled a couple times ago when, for the first time, it lingered for more than 24 hours. The consensus from a number of mainstream medical sources was “not to worry — odds are, like 99% that it’s not significant. But the fact that I even bothered to look it up speaks to a level of concern that my body may be betraying me that I’ve never had before.
I’ve vowed to essentially keep this space free from my seemingly boundless obsession with political junkiedom — there are plenty of folks in the blogosphere doing the commentary thing much better than I can (and, if you really want it, it’s pretty much unavoidable in my Facebook and Twitter feeds).
But my friend Claudia Lamb was struck with a bit of inspiration this morning on the Facebook machine, and it looked like something that might be fun to try here. It’s gonna require a little audience participation from you.
Unless you’re stationed in Antarctica, you pretty much couldn’t avoid the news the last day or two about Michael Wolff’s new “tell all” from inside the White House. The presale marketing runup to this thing is without equal since the Harry Potter series ended. So, here’s the game.
You know damned well, the pitches are already well underway for the film rights and the jockeying has begun for the juiciest roles (hmmm…script by Aaron Sorkin?).
Now we get to be the collective Casting Director. In the comments, please offer your nominations to play the parts in the picture.
The ground rules (which I just made up): Any actor, living or dead will be considered. Non-actors MAY be accepted on a case by case basis.