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

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.

In cleaning out an old file cabinet, I found the three-ring binder that contained all the records from my journey through my cancer diagnosis in 2004; the journey that led to my work in patient empowerment and advocacy. My notes, my medical records and lab test results, print-outs from the computer, and a copied page from a book that summarized my diagnosis: Subcutaneous Panniculitis-like T-Cell Lymphoma (SPTCL), all the financial records – the entire journey in a notebook. On one, I had written TERMINAL and > 6 MONTHs! in big letters, highlighted in yellow.

That’s when I lost it.

For these 12 years I have suffered from a measure of PTSD from that misdiagnosis odyssey. I would never equate it to what soldiers or the victims of horrible crimes might experience, but there have been at least two dozen episodes over time. More recently they have waned to maybe one per year, triggered by usually unrelated experiences or events – reading a novel, hearing someone else’s medical horror story, or seeing a movie that just, well, grabs me. They always come out of left field, and they usually last no more than a half-hour. Afterward I’m emotionally and physically drained for hours.

This one hit me like a baseball bat, dropping me to the floor. I let myself have a good cry, while I focused on counting my blessings, which is how I’ve learned to get past these episodes. Eventually I just got up, washed my face, and continued leafing through the notebook, giving in to the journey. And then….

To set the stage:

Weeks after I had been newly diagnosed I had contacted the Leukemia and Lymphoma Society (LLS) to see what information they might have about my unusual diagnosis. The lovely woman on the phone had been very reassuring, promising they would find someone else who had already been through the journey with my SPTCL diagnosis, promising to send me some materials to help me learn more about it, and providing information about support group meetings. I came upon the folder of materials she mailed to me in the binder.

Now – hold that thought – and flashback only to last year, 2015, when one of our APHA workshop attendees, Carrie Scholz, who lives not far from me, mentioned that she had been the person who I had spoken to at the LLS in that summer of 2004! I had no recollection of her name related to LLS. I just remembered feeling so grateful that someone had actually listened to me in my desperation. I was so happy that she mentioned it, and that I could thank her for being there for me.

Returning now to the binder… among the materials from the LLS were my notes to myself from making that phone call – and sure enough – there was Carrie’s name – misspelled! – but there all the same. Carrie Scholz – who is now a practicing private patient advocate, a member of APHA, and a friend and colleague.

You cannot fathom the jolt I experienced when I saw Carrie’s name! It was like electricity – like someone had flipped a switch!

I realized that in that instant that the binder no longer represented a horror story. Now it represents better care and better outcomes for (eventually) millions of other patients who will get the care they need because of the work of (someday) thousands of patient advocates, like Carrie, who will support them.

It’s no longer a story about a misdiagnosis. It’s a story about a revolution! The binder now represents HOPE and JOY and QUALITY of LIFE for all those people who otherwise would not have experienced it.

It has lost that horribly negative grip on me. And yes, I have kept it. The binder did not make its way to the recycling bin. 🙂

Setting aside my journey, there are a few takeaways for you here today:

First, as I taught my daughters as children, you never know when past behavior will affect your future. Today that mostly means to keep questionable images off social media, but it also means that being respectful, even in the throws of fear, will serve you well later. (This is otherwise known as – don’t burn bridges! but perhaps with a more positive outlook.) Thankfully, when Carrie and I connected all those years ago, I didn’t go right off the rails, but it’s also good advice as we deal with people inside the healthcare system who stand in the way of our clients’ good care.

Second, karma is alive and well. Carrie was so very helpful to me. As it turned out, LLS could not find any other patient who had been through, and survived, SPTCL. But Carrie had been a good ear, empathetic, and supportive – so appreciated at the time. And now we work together as I help support her business, including referring local people to her when they contact me. What went around is certainly coming back around.

Finally, that one of the biggest blessings in my life has been my ability to use my personal experiences to propel my work, and that the very worst thing that had ever happened to me (a terminal cancer diagnosis) has turned out to be the very best thing that ever happened to me (a career that I love). Many other advocates practice for the same reason – personal experiences have mobilized their advocacy careers. The lesson is that one can take anger, fear and frustration and disable its death-grip by using it to create good in the world.

Thanks for hanging in there with me while I took you on part of my office clean-out experience.

Today I tackle the linen closets.

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