I was so struck by his quote above that I read some time ago I wrote it down. It was probably three or four months ago as I recognize the teal Sailor Jentle Yama Dori ink that was in my Nakaya urushi fountain pen. Sorry, I’m getting sidetracked. Fountain pens will do that.
The quote if you can’t read my scribble: “We don’t measure the work of being a patient. There is not a single textbook that describes the work of being a patient. We just assume it’s not a big deal.”
If you’re familiar with the maxim, “to see the world in a grain of sand,” I hear the same big idea in another simple thought. Just like we find the awesomeness of the entire world in its smallest details, a grain of sand, the lived experience of being a patient speaks volumes. But no one is asking. In all of medicine, healthcare, the constant sturm and drang of how do we help people self-manage, get access to care, no one is really looking at us and what we do every day.
As a society we are consumed, possessed you could say, by “treating” disease, getting patients compliant on their medicine, lowering costs, reviewing yearly labs, but who is curious about the patient-life: the daily, yearly, monotonous, momentous, hack-ing, soul-crushing, awe-inspiring, enervating work of being a patient and living a patient’s life?
Having type 1 diabetes 45 years, my life with it has transformed over the decades. Shaded by things non-diabetes and on the diabetes front my lack of and increased knowledge, the tools and information available at any time, better medicines and devices, the compatriots I now have and diabetes community I now live in.
And yes, my friends, whether you call diabetes a condition, an illness or a disease, we live a patient’s life; you cannot afford for long to not think about what you eat, whether you’ll walk, refilling your meds, taking your blood sugar or your supplies, you just can’t.
I hope I meet Dr. Montori one day soon. Just as I hope my (Holy) Grail fountain pen wings its way into my apartment one day soon. For now, just like that beautiful ink that recorded words so true, here are some lighter and darker shades of my diabetes journey.
1 year with T1D. 1 shot a day
Life still happens…
Currently Ambassador for IFL. Nice shirt.
First book of three. Millions of articles (slight overstatement).
DiabetesMine Innovation Summit where I made the point – Why aren’t we studying people with diabetes who do well? Instant tweets.
On stage. Remarkably, a happy home for this shy kid.
Just another hotel room. In Munich to present to Roche Global Access executives.
Best stickers ever for Dexcom. Shop: B-label, Harajuku (Tokyo).
The husband who’s on this ride with me every day.
Accuracy or precision? Meanwhile life hangs in the question.
109 at 3 AM in an airport lounge. That means you’re tired, and happy.
Another day, another check…another meter.
Giving diabetes the finger?
In Bangalore, 22 year old with T1D and such poor care she couldn’t close her hands.
In Bangalore, all have T1D, they get 1 strip/day.
Diabetes friends are like no other. They’ll make you sweets with no carbs.
With beloved Dr. Richard Jackson. Also part of the life.
Reward in Munich after my pre-presentation blood sugar exceeded 225. Autonomic nervous system.
New territory: sharing one’s blood sugar numbers. We like it.
They soften the blow, blow, blow…
Can this (Abbott Freestyle Libre Flash Glucose Monitor) inserter really be so simple? Yes.
An Israeli Jew bringing diabetes care to Arab Israelis. All heart.
Al fresco breakfast in Be’er Sheva. After presenting to educators in Zichron, Israel.
Only 5 years away. Aspirational, it guides me.
You walk alone no matter who’s there. Diabetes is constant and you are brave: the patient story.