My Academic Diary: A Partial Night in the Life of a T1D Parent

Image: Nevin Ruttanaboonta

Thursday 12th October, 2017

Amy Levine

Friends and family usually send more messages of concern about our proximity to North Korea. The trickle of concern breaks open into a stream and this is one of those times. Yet this time is different because Trump is an untrusted wild card. As my family I make contingency plans about leaving South Korea - a place I have called home for over 10 years and where I met my wife and our daughter was born - it is not the prospect of (nuclear) war that keeps us up at night. Rather, we are already up because of Type 1 diabetes.

My mind is occupied by counting hours of active insulin, ibuprofen time to fight off a fever, grams of carbohydrate, and other related calculations. My 21-month-old daughter was diagnosed with Type 1 diabetes in June of this year. I have never faced a steeper learning curve where the stakes were any higher. I have also never felt such a weighty and unrelenting responsibility as trying to be my daughter's pancreas. Too little insulin and the long-term damage to organs is catastrophic. Too much insulin and it is an immediate risk of death. The art of managing a child's diabetes without any reprieve is like:

--"...trying to help my kid ride a bike, no training wheels, in traffic, in the rain, blindfolded, running along side him trying to keep him from falling, from crashing, from all the other dangers, 24 hours a day... not being able to keep him from crashing or getting lost, but bandaging his wounds and getting him back up on the bike every time... all the while being judged by parents whose kids have training wheels and no blindfolds." Karen Elizabeth

--"... It's like balancing scales in the middle of a hail storm." Leslie Lewis

--"...Walking an intoxicated adult through a glass store in high heels on a wet floor." Jolene Montgomery

These are a sample of the responses I got from parents of kids with Type 1 diabetes in a closed Facebook group. Thinking through the kind of analytical and affective work done in these analogies and metaphors is a small bit of silver-lining and beauty as part of a new research project I am developing on caregivers. I started to think about the project before our daughter was diagnosed with diabetes as a result of conversations with friends and colleagues working in health care. Yet it has taken on a great deal more meaning since the diagnosis.

12:18 am

Calibrate my daughter's insulin pump's sensor glucose reading with blood glucose reading.

12:30 am

Review academia.edu site traffic and reconsider deleting my academia.edu account (http://www.forbes.com/sites/drsarahbond/2017/01/23/dear-scholars-delete-your-account-at-academia-edu/#3fc230302ee0).

12:42 am

Pick up crying daughter, console, and return to crib.

Around 6 am

My daughter's fever returned with other symptoms suggesting she may be going into pre DKA, which is life-threatening and develops quickly. This caused my partner and I to take her to the emergency room. After around 14 hours in the emergency room, we were confident that she was not in pre-DKA or DKA. However, we left with more anxiety about dealing with that hospital and the main pediatric endocrinologist there. After much back and forth, it seems the endocronologist was embarrassed by us having sought and received treatment from another doctor. She treated our daughter and us in a professionally questionable way. This was our conclusion and that of other local friends including another Korean doctor. My partner and I are still discussing if and how to proceed with that endocrinologist. Much of this discussion revolves around anthropological and sociological components such as how to cultivate lasting collaborative relationships with doctors and nurses and how to proceed as intersectionally other (queer, Jewish heritage, American) in South Korea, which has a relatively low tolerance for any kind of otherness.

Next morning

The fever was gone and all the concern about DKA went with it. The consensus emerged that it was a viral infection. Thankfully all symptoms were gone. After a bit of sleep at home, we all were in better spirits. Yet it was only a few hours later that her blood glucose numbers went up again. A few days later we were in another hospital a few hours away to meet the other doctor we sought for a second opinion. This time we were also worried about a bacterial infection at the infusion site of her insulin pump.

I have theorized the banality of crisis in my work before. Yet I have never felt it so materially and emotionally as I have since the diabetes diagnosis.

Amy Levine is a part-time academic consultant and a full-time mother who resides in Changwon, South Korea. Her first book, South Korean Civil Movement Organisations: Hope, Crisis, and Pragmatism in Democratic Transition, was published in 2016 as part of the New Ethnographies series at Manchester University Press. She has also recently published in the Journal of the Royal Anthropological Institute, Asian International Studies Review, and Allegra: Anthropology, Law, Art & World. For now, see https://changwon.academia.edu/AmyLevine.

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