Be Heard: Send a Text to Congress – Rally for Medical Research
Medical Research saves lives – including mine, and probably yours.
Sequestration has halted a great deal of research, and may cause us to lose a generation of researchers.
PLEASE click above and let your Congress Members know what you think!
Susan Silk and Barry Goldman
April 7, 2013
When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan’s colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn’t feel like having visitors, and she said so. Her colleague’s response? “This isn’t just about you.”
“It’s not?” Susan wondered. “My breast cancer is not about me? It’s about you?”
The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie’s husband, Pat. “I wasn’t prepared for this,” she told him. “I don’t know if I can handle it.”
This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan’s colleague’s remark was wrong.
Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.
Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie’s aneurysm, that’s Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie’s aneurysm, that was Katie’s husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan’s patients found it useful to tape it to her refrigerator.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you’re going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” Don’t say, “You should hear what happened to me” or “Here’s what I would do if I were you.” And don’t say, “This is really bringing me down.”
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It’s a perfectly normal response. Just do it to someone in a bigger ring.
Comfort IN, dump OUT.
There was nothing wrong with Katie’s friend saying she was not prepared for how horrible Katie looked, or even that she didn’t think she could handle it. The mistake was that she said those things to Pat. She dumped IN.
Complaining to someone in a smaller ring than yours doesn’t do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.
Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don’t just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.
Remember, you can say whatever you want if you just wait until you’re talking to someone in a larger ring than yours.
And don’t worry. You’ll get your turn in the center ring. You can count on that.
Susan Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of “The Science of Settlement: Ideas for Negotiators.”
via Someone you know ill? Watch what you say, and to whom – latimes.com.
I must admit, I have been neglectful of late and it’s gotten a bit dusty around here. As it is wont to do, life took over. The cobwebs aren’t just virtual, though – they are metaphorical as well; it’s pretty dang dusty inside me head of late! So here’s a quick update of what’s been keeping me busy:
I mentioned in my last post that there are two things I find particularly upsetting about the Lance Armstrong affair. The first is what it means for my son to have deal with a fallen hero. The other has to do with LIVESTRONG, an ironic name for an organization founded by a man who, in the end, lived weak.
Eight years ago my mother-in-law died of mesothelioma. She was buried with a LIVESTRONG bracelet. LIVESTRONG has been a favored charity of ours as well. Neither she nor I ever benefited directly from their services, but we believed in the work of the organization.
I do not personally believe that Armstrong’s actions reflect on the organization he founded, most especially since he has put distance between the two, presumably in hopes that his good works can overcome his exceedingly poor judgement. I believe we can only condem LIVESTRONG based on its own actions, even as I believe it would be wise for LIVESTRONG to continue to grow the distance between itself and Armstrong.
Here’s my issue: I, along with many others in the breast cancer blogosphere, have called a number of cancer non-profits to task. Komen, NBCC and others have been reviewed critically. As they should be.
But it occurs to me that I’ve not heard much in that regard when it comes to LIVESTRONG, which begs the question: has LIVESTRONG been exempt from scrutiny because of their affiliation with an American hero?
I honestly don’t know, but I speculate that all the “feel good” around both the man and the organization may have clouded our vision. That’s not to say LIVESTRONG‘s reputation is unworthy, or that it is anything short of the wonderful organization it purports to be. Only that a close look is in order. If they are clear in their mission, true in their leadership and appropriate in their spending, I imagine a careful look would serve them well.
An email today from Sharon Ford Watkins of the National Breast Cancer Coalition is requesting input on defining the 2013 Legislative and Public Policy priorities. The fact that they are asking the “masses” what we think is a good thing. The fact that the “masses” have not yet been heard on the topic of metastatic breast cancer – not so good. Below you will find my response to their request.
Dear Sharon,
You don’t know me, but I have been an eager and vocal supporter of NBCC for the last four years or so. As soon as I had learned about NBCC I knew I had found an organization that “got it” and a place where my voice would reach much further and deeper than it ever could on my own.
When Deadline 2020 was launched I, along with so many others, stood with NBCC in supporting and even justifying the strategy. As a LEAD graduate, both my advocacy and my own healthcare have benefited from what you have taught me. With the skills and encouragement found at the annual Advocacy Summit I have launched a blog, served on peer review with the Department of Defense, attended the 33rd San Antonio Breast Cancer symposium, and found a place for myself in a variety of specific breast cancer communities/organizations. I know my annual membership and limited monthly contribution cannot begin to cover your investment in me. For all of this, I thank you.
But…
I was devastated by the email you sent today requesting feedback on Legislative and Public Policy priorities for the coming year. In it you state:
As you know, in 2010, NBCC set a deadline and developed a strategic plan to end breast cancer by 2020. The plan focuses on primary prevention, stopping women from getting breast cancer, and understanding and preventing metastasis (the spread of cancer), which is responsible for 90% of breast cancer deaths. Recommendations for 2013 should take into account how the proposed priority moves our plan towards meeting the overall goal of Breast Cancer Deadline 2020—ending breast cancer by January 1, 2020. (Emphasis mine)
I have spoken out on this matter before (Life on the Margins) and I thought in the past year we had seen improvement, but this was a major slide backwards; one that has me on the edge of withdrawing my support in shame.
As you state in your own email, metastatic breast cancer is responsible for 90% of breast cancer deaths. (One might argue that number is even higher…) You also share that your “plan” focuses on the prevention of mets. A lofty and worthy goal, to be sure. And a goal that leaves the estimated 162,000 of us living with mets in the dirt, trampled by the stampede of sexier topics like the Artemis vaccine. Your recurring choice to focus on the prevention of metastatic breast cancer quite simply writes off our lives.
Part of what drew me to NBCC was my sense that priorities were set based on science, on objective need not impulsive topics that “sell.” Part of what will send me away is to see you sell you like so many other breast cancer organizations have. Please, Sharon, don’t allow NBCC to douse itself in the same pink rhetoric we see everywhere. Women die from mets; let’s focus our attention on the real issue at hand. Let’s tackle what kills us…
Sincerely,
Lori Marx-Rubiner
Since I don’t think I could have said it any better, I have stolen (with permission) the post below from the always-amazing AnneMarie.
Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle. People are tired of hearing about the fiscal cliff which I prefer to call by its “formal name.” Does anyone recall the word? Correct!
S-E-Q-U-E-S-T-R-A-T-I-O-N
No matter. It seems we are ready to hang glide but I’ve been too busy running around a two square block area in San Antonio to pay much attention to any news.
San Antonio is lovely. The Riverwalk is charming. San Antonio is bustling. There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.
I am here as a patient advocate sponsored by the Alamo Breast Cancer Foundation. We are a group of 31 advocates and we are a busy bunch. Yesterday, the day began at 6:15AM. Breakfast seminar. Then, presentations. Then, more presentations through lunch followed by an interview. (There will be a video posted on the ABCF website and IF I don’t look like a fool, I’ll be sure to share!) Then, a wrap up session on the official presentations and finally, a dinner seminar hosted by Novartis. The day ended at 10PM. Today will be the same. Ditto tomorrow.
This medical symposium is THE event for presentation of the latest in breast cancer research. Each paper gets presented in a 15 minute time slot. Perfect for a chemobrain! Not a chance of getting distracted. If I glance away from the screen for a second, they’ve already moved to the next slide. Yesterday, there was “Big News” expected. It was “The News” for this 35th Annual Symposium. Continue reading
Regular followers may have noticed that National Blog Posting Month (NaBloPoMo) nearly sucked the life out of me. I was doing GREAT right up until Thanksgiving, when I realized that the point of my being interested and/or relevant was far behind me. So I’ve had a much-needed break, and now I’m back.
But I digress…
James Taylor has always been one of my favorite singer-songwriters, but this isn’t about that either.
(At least they’ve finally confirmed that chemobrain is real!) Continue reading
We all want our story heard, to make a lasting mark on the world (or at least our corner of it), to help others benefit from our experience. To that end, I’ve been writing a memoir off and on for the last five years (mostly off…). But I know that if I am going to put it out in the world, I need to put it out in the world.
It can be unnerving. Is it clear? Is it good? Does it make sense, and in the way I mean it to make sense? Is it a complete story? Is it worthy? Does it rise to the level of someone else, anyone else, really caring? Or has this been a five-year exercise in leaving something for my family? (Not a BAD thing!)
So right before I left for a Thanksgiving trip to visit my parents, I put it out in the world. I sent it to a coach for critique. I expected to be on edge, anxiously waiting. I’m not sure how much is trusting my coach, and how much is trusting my work, but I am eagerly moving on to projects that have been waiting in the wings for quite some time. So while I wait, exciting new things are on the horizon.
I’m not a huge movie-goer. If I get a night out I usually don’t want to sit silently in the dark. I end up wiating for the DVD.
But we have a lot to learn from the movies. Here, from some of my favorite movies and in no particular order, are some of my favorite lines to live by:
Stripes: “An army without leaders is like a foot without a big toe.”
So I Married an Axe Murderer: “Come, let’s dance like children of the night!”
Perhaps it is said every year, or at least every fourth year, but it feels like our country is more polarized than at any time in my memory. The good news is that we have two presidential candidates who stand in stark contrast to one another. I am, however, puzzled by the small margin of “undecideds” who are said to be the determining factor in today’s race. You may not like either candidate, but it doesn’t seem like a really tough choice. But that’s me…
