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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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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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.

photo - dr eastwood

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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The Binder, the Meltdown, and Some Advocacy Karma, Too

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I beg your indulgence today as I relate a personal story. I don’t usually do this – rarely do I share this much personal information! But I promise you, if you stick with it – it will make sense by the end.

As mentioned in last week’s post, my husband and I are getting ready to move. In less than three weeks, we’ll have begun settling in more than 1200 miles away.  Since we will have no basement (!) and since it’s just really about d*mn time (!) – we are cleaning out, purging really – getting rid of the excess stuff in our lives that we just don’t need or want to have to deal with (or don’t want our kids to have to deal with) in the future.

Yesterday was “clean out my office” day. It was a daunting task, a room chock full of everything from old computers to old paperwork, personal papers, workshop materials, plus books, books and more books, and more tchotchkes and little collectible things than you can imagine. Now about 2/3 of it is either set aside for yard-sale-round-2 – or is in the trash or recycling. Gone. Much of the rest is packed up and ready to move.

Today I’m actually feeling quite pious about the whole thing. I was organized, got started early, and played my favorite music – loudly –  all day. I made it as much fun as I could, considering the huge job that it was. By the time I was done, there was a certain “high” to having completed such a huge task.

Cleaning out was physically demanding. However, the real challenge was the emotional demand – something I had not anticipated. Cleaning out meant I dealt with memories all day long, some good, some not, and some alarming, as you’ll see in a moment.

I found my daughters’ birth certificates. I found the draft of my first book (one I never published). I found my divorce papers from 1988. I found all my newspaper column clippings – 6 years worth! I found my mother’s hole-in-one golf trophy from 1977. I found proposals I had written when I owned my marketing company, and thank you notes from past clients. I found the little give-aways from the radio show I hosted several years ago…. the list goes on and on.

Finding memorabilia means you revisit their history; it’s not like you can just sort those items without processing them.

And thus – the melt-down.

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