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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Preventing Our Own Brexit, Saving Our Clients and Advocacy Practices

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The whole world was fascinated last month by Brexit: the vote in Britain to leave the European Union. Would they leave? Wouldn’t they?

But to me, the most fascinating part was what happened the next day. Once the vote had taken place and the (bare) majority had voted to leave the EU, those who had voted to leave began to learn the real truth of what they had chosen, and realized they had been duped.

Yes, duped. Because the leaders on the “leave” side immediately disclaimed the promises they made. Ooops! they said!  No, we can’t really apply the billions of dollars we send each year to the EU to healthcare. We didn’t really mean that!  We lied to you because we wanted you to vote our way!

How could those politicians make all those promises they never intended to keep?  How did the majority of a citizenry fall for it? Why, now, do many of those citizens who voted to leave the EU wish they could take back their votes, because they have changed their minds?

Brits can blame themselves – period – for not being smarter about reality. They voted for something that wasn’t true or possible because they believed and shared what they heard and read, never vetting possibilities or veracity.  They Facebook-liked, and shared, and re-tweeted, and Instagramed, and discussed in pubs, all that misinformation, disinformation, political venom, disdain and hostility – never fact-checking, never discerning the truth.

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They simply passed on messages that supported their own wishes or philosophies – even when they were lies.

… Exactly like we Americans are doing today with our presidential election and its issues.

It had quite the ripple effect. Because they shared all those lies and vitriol, the world became a more dangerous and unstable place. (Just what happened to your 401K the week after Brexit?  My point is made.)

So what does this have to do with health and patient advocates?

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Survey Says! The Results Are In

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We privately paid, independent, professional patient advocates “tend to be older, white, female, more highly educated, and have other medical training or past careers in related professions.”

…. or at least that is one conclusion drawn by the surveyors — those who built, issued and analyzed the first National Health and Patient Advocate Survey.*

Both private, self-employed advocates, and employed advocates (hospitals, insurers, employers), were surveyed. Whether or not you were one of the folks who took the survey, if you have any interest in patient or health advocacy as a profession, you’ll be interested in the results.  They were issued June 30 – you can download the report from here.

But that’s not the best news from the results… The best news is…

(drumroll please!)

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Would You Draw a Line?

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Early in my patient empowerment work, I was invited to write a column for my local daily newspaper. Over the next six years, I wrote hundreds of columns on every empowerment topic imaginable from how to get copies of your own medical records, to how to research a drug your doctor prescribed for you, to the (what we called at the time) “healthcare reform”. My column ended in 2011, but much of that work still stands today, some as useful today as it was then.*

As a result of those columns, I became a resource person for many locals who were struggling with some part of their healthcare. Many were scared or angry with the parts of the system that didn’t work for them. Some were just desperate to find a solution for an incurable disease or life-altering damage from an accident.

One such gentleman was Glenn, a man who had developed a glioma, a tumor that had grown tentacles throughout his brain. He was a well-educated man, an architect by trade, and was frustrated by what he saw as the continual roadblocks to his care. The glioma was inoperable. He had sought second and third opinions. His neurologist wanted to treat him with chemo, but Glenn refused chemo because he felt as if exposure to toxic chemicals might have been the cause of the glioma to begin with.

He first contacted me in 2006, and we stayed in touch, discussing many aspects of his care, until he died in 2012. Throughout those years he approached me with questions, and together we sought ideas and solutions, many of which subsequently ended up in one of my books and several of my newspaper columns. From his surprise when I wrote in one column about changing doctors, to the story I’m about to tell you about seeking help from a bogus cancer treatment center, I got to know Glenn quite well. He became a friend, and I learned so much from our interaction. I was not acting as his advocate by the definition we use today for professional patient advocates. We simply bounced ideas off each other.

While I respected his intelligence and the career he had built, I also learned from Glenn what desperation does to a patient. Which leads me to the topic of today’s post.

About two years into our friendship, Glen’s glioma was growing, and he still refused chemo. He had left his job, and spent his days in search of something – anything – that would make the tumor disappear.

For example, he found a “doctor” online who promised him that if he bought her DVDs, and prayed many times a day, his tumors would dissipate. He spent hundreds of dollars on DVDs. He prayed and prayed. He was so convinced her approach would work, until, as you might guess, it didn’t.

He found several other possibilities of similar import over the next couple of years. He would ask my opinion, and was always disappointed when I didn’t react with his same enthusiasm. My assessment was usually based on cost – not just money, but the cost to his physical well-being and emotional investment, too.

Then one day he sent me a link to a clinic he had uncovered, convinced it offered him THE solution, because it offered him THE cure. Continue Reading →

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Balance in All Things – We Create a World of Good

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Since moving last month, I now live not far from Orlando. Unless you’ve been living under a rock, you know the tragic and horrible events that have surrounded this city during the past ten days. From the killing of a promising young singer, to the mass murder of 49 young people, to a toddler’s death by alligator. I didn’t directly know anyone involved, but I can certainly speak to the pall that has been cast. The horror, followed by the myriad resulting emotions – sadness, dread, apprehension, and certainly the anger…

Contrasted with those events, this week my inbox featured two testimonials for APHA members.

Now – keep in mind that I receive testimonials frequently. Not a week goes by that I don’t get a submission from a member’s client that speaks in very positive and often glowing terms about how that advocate helped the submitter. It’s one of my favorite parts of my work.

But this week, receiving those good words affected me very differently. It was like the heavens opened and the angels began to sing! Because this week, the very good and beautiful words written about those advocates who have changed lives in very positive ways was a counterbalance to the very bad and ugly.

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The YOMs Are Back! (And That’s Not a Good Thing)

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You may be aware that The Alliance of Professional Health Advocates maintains a list of mentors – people who have worked in private advocacy for long enough, and who have become successful enough, to be willing to, and able, to mentor advocate wannabes – those of you who want to become the best advocate you can be, but understand there are limitations to your knowledge that will get in the way of your success. Our listed mentors are professionals who are paid for their expertise, education, and advice by those who want to learn from them.

Hold that thought.

We all know there are people “out there” who think they are – or at least behave as if they are – entitled.  Entitled to anything at all – entitled to park in a handicap parking space (when they aren’t handicapped), entitled to move to the front of the line, entitled to help themselves to something they should be paying for, even, simply, entitled to interrupt or even bully others.

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Tough Questions, Informative Discussions, and Opportunities to Count Our Blessings

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From 2006 to 2010, I hosted a weekly radio show, sponsored by Upstate Medical University (Syracuse, NY). It gave me the opportunity to interview truly knowledgeable experts in every aspect of medicine and healthcare you can imagine.

It was an incredible learning experience. I would walk away from our recordings each week realizing that for every iota of information I knew or had just learned, there were millions of iotas I didn’t know, would never know, and might never even know to ask about. Gratifying, brain-stimulating, and sometimes overwhelming.

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Dr. Gregory Eastwood

Included in the conversations was a monthly feature that focused on ethical questions in medicine and healthcare. I co-hosted the sessions with Dr. Gregory Eastwood, the president of the university, and a member of the Bioethics and Humanities Department. We made quite a team: the professional who, for decades, had dealt with these issues and the people who faced them, paired with me, the patient, who had never had to deal with most of them, but who tried to put herself in the shoes of those very frightened, overwhelmed and sometimes angry patients and family members who were forced to face difficult and often heart-wrenching decisions.

During those years we produced dozens of rich discussions, dealing with facts, reality, and perception, as affected by morality, religion / spirituality, culture, the law, and the human heart. I just loved those conversations – they made me think in directions my brain had never been forced to go before. (One of the results was the reminder to count my blessings. Few of us do that often enough.)

In 2010, I had to walk away from my hosting duties. My travel schedule had made it all but impossible to keep up the weekly recording schedule; totally unfair to the producers, and exhausting for me. I look back on the experience with gratitude for both the opportunity of meeting so many intelligent people with so much expertise, and the in-depth education I received on so many topics related to medicine, the healthcare system, and their impact on people.

Fast forward to today.

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Today I Expect They Will Begin to Fly. Will You?

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If you follow this blog, you know my husband and I have moved to Florida. It’s been a long two weeks, but we are now settled in our temporary housing, a nice home in the same community where we will be building a new home. (Yes, another move!) 

Here in my new space, my desk sets right next to a window, looking out over some garden palms. Pretty, and I thought maybe peaceful, too. I’d be able to get some work done – a quiet place to work on APHA business and book writing…

Until early last week Continue Reading →

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