“Oh dear Jesus. Please protect us, Lord! “ I heard the women sitting next to me on my flight from New York to Philly shout out for the 10th time. I have to admit, I was getting mildly irritated that she was praying out loud at every bump. We were already so tightly squeezed into the seats of the two-propeller-engine machine that we could hardly move. Yet her generous curves, abundant gesticulation and constant fidgeting, physically forced me to curl up like a little ball almost disappearing in the plane’s window. To my excuse: being German, public display of religious sentiment (ok- of ANY sentiment!) was just too much to deal with.
Mentally, I thus constructed an impenetrable shield of silence around me and retreated into my fantasy world: I had come from Dave deBronkart’s one-day masterpiece on the essence of the e-patient revolution. I was completely captivated by all I had learned at this amazing e-patient boot camp, but in particular, was contemplating the irrefutable case that Dave and the other e-patients had made: All of us are e-patients- periodically, inevitably, eventually.Somehow I was resisting this conclusion. Somehow I was uncomfortable with calling myself an e-patient. This issue had been haunting my mind for a long time to be honest. I was thus determined to fight it out in my head once and for all during this flight!
At the take off at La Guardia, the weather had been rainy and cold. Our tiny plane had bravely fought its way through the clouds though and now a bright sunny day was greeting me as we were approaching Philadelphia. My window seat allowed me to look down at the sunbathed suburbs. I could clearly distinguish the wooden houses, generous driveways, and even the cars below. In my stats-crazed mind, I started to imagine the families living in those houses. “Ok, so there is the average family of four, two parents, with two kids. “ Then I thought: “Oh wait! On average at least one family member will be obese and thus approximately every second house will eventually have one diabetes type 2 patient living in it!” Yes, from this perspective it was thus true, there were patients everywhere. How sad! (And yes, you really do not want me to fly over your house!)
Unfortunately, my neighbor’s intense flight anxiety kept on interfering with my reminiscing when one huge bump ripped me out of my revelry and dropped us down what felt like a good hundred meters. This set off all sort of bells, lights and screams. I dug my fingers deeply into the armrest of the chair and tried to locate my stomach which had slipped down to somewhere around my ankles. Then I caught a deep breath, trying hard to assess just how panicked I should get at this moment. Fortunately, my praying neighbor had moved on to reciting the “Father all mighty” at the top of her voice. “At least one I sort of know”, I thought and gave it a shot. As I was trying to concentrate on simultaneously translating my neighbor’s prayers it to German though, another even rougher drop, followed by a serpentine side-to-side swerve, completely killed my concentration. I stared at the wing outside my window. I had heard a weird noise coming from that direction: I was certain the pilot had tried to get the wheels out but didn’t. This realization was followed by an official announcement via the speakers preparing us for a rather rough landing…
Instinctively, I took the plane’s manual out of the seat pocket in front of me and started reading the instructions. I started preparing myself! “How do you get into the brace position again? Which thing do I have to pull in case I have to open the emergency door?” We were now also flying over water, so I located the floating device and prepared to take my shoes off. …oh and I stuck my iphone in the inner coat pocket, wouldn’t want that to get wet!
Then a third bump made me realize the wheels were now out. I glanced ahead and could see the runway. A wave of relief passed through my entire body! I turned and smiled reassuringly at my exhausted neighbor. I told her everything was going to be fine. That this was simply one of those awful bumpy rides. And sure enough, after the plane had performed a few more, spectacular swerves and the lady next to me a couple of additional “Holy mother Mary” tirades, we finally landed safely. My neighbor and I looked at each other and laughed in relief. She pointed at the manual in my hands: “See, you got scared too!”. She was right, of course!
Back inside the cozy, safe main terminal, I still was shaking my head laughing at the funny and completely different reactions she and I had had faced with what we thought potentially was imminent death. In those moments, we never know how we will react: will our basic survival instincts kick in or will we panic? Will we give our fate up to the greater powers or prepare to put up a fight? Will we speak up and share our fears or curl up in silence? And the answer is: Any combination of those things is possible, depending on the situation, the environment and our personalities.
Boarding my next flight soon thereafter, (This time a huge plane to go back home to Europe), it occurred to me how remarkable Dave’s reactions had been when he was diagnosed with end-stage cancer: He instantly had decided to put up a fight against his bleak-looking odds. All along his struggle with cancer, he had used his fears as force to get prepared, informed and empowered. He focused his anxiety-induced adrenalin rushes to connect with anyone that could help save his life…and it worked!
Since then, Dave has applied his energy and mind to distill for us which factors and behaviors allowed him to survive so that we can do the same should we need to. I had read most of the books and sources Dave cited during the boot camp before, including his own book. Yet watching him present and think through these materials, discuss his insights with a phenomenal audience of equally experienced e-patients like Allison, Akiva, Christine, Grace, Pat, Sarah and Tiffany added a completely new dimension! I am deeply grateful that I had the opportunity to listen and learn from Dave and other equally remarkable e-patients at the event. Edelman sponsored this first US-based event and in my opinion, attending such an e-patient bootcamp with Dave and other e-patients has to become a core requirement of any pharma initiative searching to be patient-focused. Every single thought and insight unexpectedly and permanently opened my mind and shifted my thinking.
The mind, once expanded to the dimensions of larger ideas, never returns to its original size.
Oliver Wendell Holmes
As for my internal dilemma with the e-patient label: yes, it is true all those people I watched from my plane are patients too and some will definitely make empowered decisions at times. Yet, does this mean they spend the same time and energy to inform, support and connect patients as all of the e-patients present at the event? Could anyone of them even remotely tell you what it was that empowered them as e-patient Dave managed to crystallize for us so brilliantly during the day? Probably not! It is like in market research, the average patient can tell you what is, but not what will be. I fear that by generalizing the term e-patient to everyone, it implies that anyone can be a self-proclaimed expert and speaking on e-patients’ behalf without having gone through their unique experience. Dave is not your average patient. He is remarkable. His experience, but in particular, how he turned it into actionable learnings for the future is unique. As Tom Ferguson, the founder of the e-patient movement predicted:
The term e-patients describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.
And I would like to add “experienced” to the mix. Listening to Dave during the bootcamp permanently shifted my perspective on the e-patient movement. He was able to do this, because he involuntarily went on a very bumpy ride with cancer, survived and then gave back to the community by sharing his experience. So let me finally put my feelings into words: I am not an e-patient. Not because I’m not a patient. Of course I was and will be in the future, but because I have not been confronted with these same experiences. My plane didn’t crash….yet and hopefully will not! If and when it does though, I know amazing people who I can turn to, that can mentor and support me. If and when I need to, they will be the invaluable instruction manual that I keep in the front pocket of my crazy life …and that will teach me how to fly again as a patient.
In the meantime, I’m definitely “e”: e-traveler, e-mama, e-blogger, e-German…I will do anything in my power to support and further the e-patient movement.