Of Heroes, Trust, Discord, Arrogance, and Karma – Part I

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This year I can tell I’m finally getting beyond the trauma. It’s a feeling of freedom to some extent, but sort of a shame to another. And you know me – I always end up analyzing these things (or, perhaps over-analyzing them) – enough so that I’m going to share some of that analysis with you.

The trauma I refer to was the cancer (lymphoma) misdiagnosis in 2004 that propelled me to change careers to patient empowerment, and eventually advocacy. By trauma, I mean that I was told I that in a few short months I would be dead, and that I butted heads with the very doctors who were supposed to help me manage my diagnosis, one a most-arrogant oncologist who, in God-like fashion, told me I was foolish to waste time getting a second opinion because “no one will know any more about your cancer than I do.”

Right.

On September 20, 2004 – 12 years ago last week – after three months of doing battle with the healthcare system, I learned from a hematopathologist at the NIH that I did not have lymphoma after all. There was no evidence of any cancer in my body. None. Zip. All these years later I have never had any treatment.

Clearly, no, I wasn’t dead in a few months. They were wrong.

Further, it cost me every penny of my savings to prove I did not have cancer, despite the fact that I had health insurance. (It was crappy, high-deductible health insurance, but I was single and self-employed, and it was all I could afford.)

Since then, every year on September 20th I have mentally celebrated what has become a rebirth of sorts. I have simply taken stock of all the positive life changes that resulted. I’ve tried to use that impetus to drive me past the PTSD that remained for so many years. It seems to work; I haven’t had a meltdown in more than two years, and life just keeps getting better and better.

I know I’m getting beyond the trauma because when Tuesday, the 20th rolled around this year, it was late afternoon before I even realized what day it was. In the past, I’ve dwelled on it for days before, and sometimes after… but this year, 2016, I barely thought about it at all. Hooray!

Of course, life lessons can always be gleaned from such an experience. So today, based on my misdiagnosis odyssey, I want to focus on behavior in the face of discord, and how it can have an enormous effect on one’s reputation and success as an advocate, just like it did for those doctors involved in my misdiagnosis. Further, over time, it can have an immense ripple effect, both good and bad – the part I call karma.

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The Starfish Story Curmudgeon

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Several weeks ago, a couple we know were married. It was a wonderfully happy event, celebrated by many. The wedding itself was elegant, and beautiful, and everyone had a delightful time at the reception. You know – the stuff fairy tales are made from.

The bride chose a starfish theme for the celebration, telling the starfish story alongside it. She has worked hard for decades as a nurse and the starfish story speaks to her – a perfect choice for her, really. Starfish were part of both her wedding shower and the reception decor. Just lovely.

What? You don’t know the starfish story?  Well, neither did I. So, in a nutshell:

A young boy is walking along the beach when he sees hundreds of starfish washed up on the shore. In dismay, and realizing that many of them are still alive, he begins chucking them back out to sea so they won’t die on the beach. A man comes along and asks him, “Why are you throwing those starfish back out into the sea? You can’t possibly save all these starfish! What difference can you make when there are so many to be saved?” After thinking about it for a moment, and throwing one more starfish back out into the water, the boy replies, “I just made a difference for that one!”

Of course, the starfish story got me thinking about advocates. Isn’t the “one person can make a difference” a huge theme in our work?  We can’t fix the entire healthcare system, but we can most certainly help one person at a time! 

It would seem like the parable of the starfish fits us like a glove; as if we should embrace it, appreciate it, and even share it with others to help them understand why we do the work we do… 

Until we realize that maybe – just maybe – it’s way too simplistic. Maybe we really need to take a closer look. In fact, maybe the starfish story represents how we should NOT be doing our work.

Say what?

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An Independent Care Professional’s Most Important Body Part

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I’m guessing you don’t think of your body parts as making important contributions to your advocacy career.

But they certainly do! In the past we’ve talked about the importance of your ears (listening). I could also focus on your brain (a – ahem – no brainer), or your fingers (which dial your phone or type your emails) or even your feet (which take you to meet your clients).

While those may be important, none are as important as the one we’re looking at today. Today we’re going to take a look at the one body part that will help you improve your clients’ outcomes, keep you on track with your practice; help you make your best decisions, and improve your chances of success as an advocate. Today we’re talking about your gut. (OK – I suppose this use of “gut” may not be classically thought of as a body part – but roll with me on this one, please!)

No, I’m not peddling probiotics, nor discussing the latest in stomach remedies. Nor am I looking at your decision to eat healthy – or not.

Instead we’ll focus on your gut as it applies to making decisions, helping you overcome hurdles, and finding the best answers – the ones that work best for you and your clients. As in, “Go with your gut!” or “Trust Your Gut!”

For me, learning to follow my gut has been an evolution. It wasn’t how I was raised. I was raised to make big or important decisions by reviewing pros and cons, sometimes in lists, perhaps on paper. Do the math, or figure out consequences – whatever was appropriate to the situation.

But sometimes, no matter how comprehensively I listed pros and cons, and no matter how accurately I interpreted those lists, my decisions did not work out well. Those errant decisions included my first marriage – which failed miserably –  and choosing a business partner who tried to put us into bankruptcy. On paper, with lists of pros and cons, and using the method I was taught to use, they looked good, but they were still bad decisions.

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Celebrate the FUN: Anticipation, Reconnecting, and Buying New Stuff

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Most of us spent at least 13 of the first 18+ years of our lives going back to school this time of year. Many of us went back to school in August or September even more years than that – through college, even grad school or medical school…  And for some of us, like me, who chose teaching as a career, there were that many more years…. (In fact, I went back to school for 27 of the first 33 years of my life.)

Then of course, our kids went back to school even when we didn’t… so add another 13 or more years to that…

So is it any wonder that when late August and September roll around, that we aren’t feeling like… hmmm…. isn’t there SOMETHING I’m supposed to be doing to get ready to go back? Only now the question is, “Go back to…. what?” 

It’s beyond nostalgic. It’s momentum. It seems to be almost a biological trigger that makes us yearn for the old days of “going back.”

However, I actually think the nostalgia born of momentum has almost nothing to do with going back to school itself. It’s more about three favorite things: 

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… and Now the New York Times

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Over the years I’ve been asked this so many times – when do I think health and patient advocacy as a well-known profession will “arrive?”  As if there should be some sort of date on which a switch is flipped and the world begins to recognize, then hire independent advocates to help them navigate the healthcare system.

Truth is, I’ve been expecting that tipping point for years. But (true confession) the evolution has been slower than I anticipated. Despite my 30+ years of business experience, working with every size business in every area of business imaginable, my crystal ball is still somewhat tarnished and my prediction abilities remain challenged.

The answer remains:  I just don’t know. It has been growing steadily. The opportunities are apparent every day!  But… yes, it has been slower than I thought it would be.

So many advocates, frustrated because the profession isn’t more mainstream, and because their phones don’t begin ringing off their hooks the moment they hang out their shingles, ask me “Why can’t the Alliance make it happen?  Just do a lot of big promotion!  Why aren’t you pushing advocacy in national press?  Or doing lots of google advertising? or?”

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Whinery – How to Make Your Fortune

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Maybe you’ve heard that old joke:

Know how to start a winery and make a small fortune?
… Start with a large fortune.

On my recent visit to California, I was reminded of that joke. I was teaching APHA Workshops in San Diego and it came up twice:  first because one of our attendees brought me a bottle of wine from her northern California neighborhood (thanks MR – delicious!) and second….

Because we followed the money to improve attendees’ chances for success – great success! – as private, independent health and patient advocates… amidst some “whining” – because it’s a topic very few like to think about.

Here’s why and how:

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Our Clients Need This ONE Skill the Most

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Twenty years ago, prior to self-employment and work in patient empowerment and advocacy, I was the marketing director for my local community college.

In so many ways I loved that job. It was different every day and allowed me to meet and get to know people I never would have known in any other way. It required me to get out into the college community to meet faculty, other administrative departments, and students. It required me to have good relations with the press, and because it was during a recession, it required me to be creative and clever to bring in new students. Community colleges attracted so many non-traditional students — those who were older, or had been laid-off, or wanted to change careers; they had such interesting backgrounds and dreams. And the biggest challenge – the advent of using the internet for marketing. Can you imagine? Attracting students by using the cool new surfing tool – the World Wide Web!

As I said… I just loved that job.

But, unfortunately, yes, there was a downside, too.

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Whack-a-Mole and the Zen of the Caterpillar That Became Lunch

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Tuesday was a whack-a-mole day. One thing would go wrong, I would begin to fix it, only to find something else needed fixing, too. Details with new bank accounts (have you tried opening a new business bank account lately?), an incorrect tax bill from the city where I now live and do business, hiccups with our new phone system, and myriad technical problems with the ongoing redesign and redevelopment of the APHA membership website… 

Yes, whack-a-mole.

But Wednesday and Thursday, two experiences combined to give me new perspective, one I’ll share with you in hopes it will help you weather those whack-a-mole days when you need a new perspective, too.

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