My Father, a Quantified Diabetic
Stefan Hoevenaar’s father had Type 1 Diabetes. As a chemist, he was already quite meticulous about using data and those habits informed how he tracked and made sense of his blood sugar and insulin data. In this talk, Stefan describes how his father kept notes and hand-drawn graphs in order to understand himself and his disease.
Notes | pen and paper
Hi I’m Stefan Hoevenaar, I live about five minutes from here with my family of three kids and wife. I’m going to introduce myself a bit and my father and then tell something about diabetics and then about how he was a Quantified Selfer for about 30 years.
I’m a designer and entrepreneur, I have a company called (Illumien?), it’s 20 people and we think of new futures for companies and develop new services and (zapa ?) is a cool tool which you can look at future news and we serve hundreds of news rooms around the world. But I’m not here to tell about (zepa?) and (Illumien) I’m here to tell about my father.
My father, this is him with my youngest son Martin, he turned a diabetic 30 years ago and he was a chemist by origin. He wanted to live a normal life as much as possible and I think I’m here to tell you how he did this as a way of living through his life.
He died two years ago on a train station in Pyongyang in Korea and this is his last picture ever taken for you life logger you must like that, there at the train station in Pyongyang he never left there. he died of causes related to diabetics, a kind of coma that wasn’t solved.
Some 360 million people around the world has diabetes and actually this is the largest group of Quantified Selfers around the world. They all are desperately Quantified Self because they need to measure their blood level like four, five, six times a day.
How does it work? I’m just going to explain for you who don’t know. There is a sugar glucose level that can be too low, it can be too high. If it’s too high and hundreds of millions of people in the world don’t notice if it’s too high it hurts your body. Vessels get s hurt, eyes, brain, everything gets hurt and you quickly deteriorate much quicker than you often think. If it’s too low you can get in a coma called a hypo-coma death. And to manage this you eat and you have more insulin and you either get more sugar or you eat and you move around. If you move it goes down if you have sugar it goes up and you use insulin because you measure your blood. You measure in your blood what the sugar level is. You know your sugar is too high and you use a syringe to put in some insulin and your blood sugar level will go down.
And you manage this the entire day, and some people live very conscious lives the people who know they are diabetic and there are probably more around you than you know are diabetic.
It’s becoming a little bit more easy to have say a pump that trickles feeds insulin into your body all the time, but the Quantified Self of measuring is not yet possible because the devices get clotted with some blood and it doesn’t work. There is suspicion that the new iWatch will have a glucose meter and this will change the lives of hundreds of millions of people, but that’s uncertain and there’s rumors about it .
My father kept track on paper. These are notes, these are summery notes. He had daily notes, daily notes about how he measured his blood five, six times a day and there’s interesting notes around it.
Understandable high values it says, a lot of uncontrolled eating all bad, beautiful values. So he was trying to keep track of his thing. This is just a few years. This is 98 to 2012, summaries across the weeks. It’s very interesting to follow this because he was a Quantified Selfer and he was a bit of a sentimentalist as well, he wrote down everything. He wasn’t too digital yet, it was a bit before his age.
This is a chart from 1983 when he started. This was 30 years back and he started logging. He was a chemist. This is 1983 to 2012, his entire life in a detailed schedule with blood measurements, details on how he was using insulin. Details on how he was doing and what was happening to him. There are interesting notes there for me at least.
I’m trying to grasp if it tell me something more about diabetics that I didn’t know.
This is just some detail and hard to see perhaps but these are all summery of summery of summery measurements, and then he has little notes around like holidays in Wales, holiday in Asia, holidays in United States. I was with him then by the way.
And it goes on and on and there is all these analysis he is doing, which reminds me a lot of the Quantified Self data you see often how much analysis is there, what is going to come out of this. A lot of data gathered but so what.
But for him, it was very personal. He could relate the data to his own life, to his own eating, to his own injections, to his own little details. So it says here stuff like, bad behavior for two weeks, a lot of chocolate, stuff like that. He knew what am I doing, how are my living and how my eating. This is about how he changes the way he applies insulin. New types of insulin, very hard. Holidays as excuse, Christmas time, so he is eating a lot. Severe hypos, so all these little notes and here’s tracking what happened and how did people save me by people giving sugar etc.
And in the end, he said I need to control myself even more directly. So this was a chemist, who was measuring himself at this level trying to resolve himself, and even he wasn’t pleased enough; he was a bit of a fanatic. So there is 3 ½ hundred million people around the world with the same kind of life, in a different style perhaps, and I’m just trying to point out that he intended to try and live a normal life as a diabetic.
That’s the story just sharing the way my father did as a way of going to do for myself. Thank you.