“Congratulations. You are a Type 1 diabetic.” The doctor said, after my blood tests came back. (No, he didn’t test my sugar in the office with a glucometer. He listened to my symptoms on my first visit, ordered blood tests and made me come back a week later) My sugar was in the six to seven hundred range. He handed me a bag of needles and two bottles of insulin, showed me how to use them, and suggested I enroll in a diabetes education class at the Mt Sinai Medical Center in San Francisco. I didn’t immediately. Instead I went home and called my father in Ohio.
I was diagnosed Type 1 relatively late in life at the age of 28, which is coincidentally the same age my father was at his diagnosis with the same condition. He had twenty years more experience as a T1 by the time I was diagnosed. At the time, I was… um… under-insured, working at a custom cabinet shop in San Rafael, California. I was healthy, full of youthful optimism and a sense of immortality, and had no primary care physician. When I got sick, I’d just lay low for awhile until it passed, and get back to it as quickly as possible. Then one day I got sick, and didn’t get better. I had no energy whatsoever, and was peeing constantly. I’d used up all of my sick days and then some of my unpaid vacation days trying to shake it off, and when I finally went back to work, my co-worker persuaded me to go to see a doctor, because I was losing weight so fast that he thought for sure I had some horrible affliction. I asked him the name of his doctor, and paid him my two visits.
My father, Doug, and I had had a strained relationship over the years, but by this point we were on speaking terms at least. Our now shared condition became a new bond in our life. And while he was a great resource in coming to terms with the condition, he was also not the best mentor a diabetic could have. He was a smoker, an alcoholic, and the kind of patient who handed his care entirely over to his doctor. He had never done home blood glucose testing. He had been dealing with the disease since 1972 by going to his doctor every few months and getting his blood tested there. The doctor would hem and haw, and make suggestions about increasing or decreasing his dosage. He would give advice regarding how to eat in line with American Diabetic Association guidelines for a healthy diabetic diet, which were more focused on controlling the scourge of diabetic related heart disease with a low fat content than with bringing his blood sugars into a healthy range.
Doug assured me that his doctor really knew his stuff, and he believed in his advice wholeheartedly. He told me once that, “He has a daughter in college who is a Type 1 diabetic, so he has a lot of experience caring for the disease.” I asked him how his doctor’s daughter was doing with her self care, and he told me that she was a “Brittle Diabetic” who was having trouble with her eyesight – meaning that she struggled daily with extreme highs and lows so much so that she was suffering early complications of diabetes. Understanding that each of us is responsible for their own outcomes, and the doctor was not to blame for his daughter’s poor health, still… the incongruity between this revelation, added to the fact that his doctor did not insist my father have a blood glucose meter to use daily, and his unshakable faith in the man took me aback. My father had absolute faith in the effectiveness of his doctor, because he cared for someone whose diabetes was entirely out of control, and who was fast-tracking toward blindness and kidney disease.
This brings me to the title of this post. You may label yourself a “Brittle Diabetic”, a victim of an autoimmune disorder, or a failure of every attempt to rid yourself of insulin resistance by shedding all of those middle-age pounds, just as some people label themselves plumbers, teachers, stock-brokers, and bakers. I want to remind you that you aren’t anything more (or less!) than the abstraction that is your name.
We Aren’t. We Do.
Language is a map of reality, it isn’t reality. The language we use to represent things that we or our bodies do, is an abstraction… a shortcut that does disservice to the complexity of the actions we take and biological functions our bodies do by slapping a label on top of the heap, and making us forget that we are conceptually turning a process (a verb… living life, dealing with challenges), into a noun (a thing… your identity as a diabetic or type of person; as a success or a failure).
A verb can change. You might only be able to roll a bowling ball with all the skill that I can currently muster… (pretty much the skill of any flightless bird. Slightly better than an ostrich and worse than a penguin), but if you decide that it is worth your focus, you can continue throwing it down a lane a little differently every time, focus on what works and what doesn’t, and eventually become as good as a professional. However if you do bowl like me, and identify with the label “I am a lousy bowler” then that is likely all you will ever be in that context in your life.
I have served in the military, worked in a few custom cabinet shops, worked in an artisan bakery, done digital prepress, and now I manage IT policy for a large corporation. The degree to which I thought of myself as and identified with the labels for an one of those endeavors – soldier; woodworker; baker; computer technician; IT professional, is the degree to which my self-perceived choices were limited. Turn your labels, your nouns, back into verbs and enjoy possibility.
You are not a baker. You bake for a living.
You are not a stock broker. You trade stocks for a living.
You are not a failure at anything. You have previously failed at or struggled with… whatever the challenge. Because you have tried things that didn’t work in the past, you know now what doesn’t work for you in that context. That can inform your choices moving forward, so that you have only succeeded in eliminating ineffective approaches.
You are not a “Brittle Diabetic”. You have a history of caring for yourself in a way that didn’t work for you and you haven’t yet made the key distinctions you need to start living with blood sugars in a normal range.
You are not a victim of diabetes. You are challenged with a disease that can debilitate, demand, and depress, but that can also be an ally that your non-pancreatic or non-metabolically challenged friends lack… and constant reminder to eat, exercise, meditate and live healthfully.
Reframing diabetes from liability to asset
That last reframe is one that works for me. I am approaching 50 years of age, and when I go back to my home town and look at my high school friends and my family who have not had this daily motivation to eat well and stay active as a discipline for self care, I see the effect that lack of focus has had on their health. I am in some ways grateful for this disease.
Also, when I see all the suffering that is in the world, and realized that I was born at a time and in a country where opportunities abound and I don’t have to live my life in fear of despots or famine, and that my only big challenge is a disease that is rapidly getting easier to treat and will perhaps in my lifetime be cured, I am grateful that of all the challenges I could have been dealt, it is T1 diabetes.
For perspective, my mother’s mother was a paranoid schizophrenic, and three of her seven grandchildren are as well, including my only brother, Jay. Bearing in mind the tragedy of mental illness so completely expressed that it severely impacts your path in life and the resources you bring to the table, if we are simply keeping a list of attributes in a plus and minus column of sibling rivalries, I am very happy and grateful for my father’s diabetes over my grandmother’s schizophrenia. Grateful that I don’t struggle with mental illness, homelessness, drug addiction, muscular dystrophy… any of thousands of alternatives. If you struggle with more than one of these issues, there are still thousands of others you don’t, and I can assure you that your diabetes care can be the least of your worries if you keep pushing forward and trying to make new distinctions about the disease process, and how others are learning to manage it.
I subscribe to the old proverb that every challenge is an opportunity in disguise. No matter how far down the road you are in the progression of this illness, there is always an opportunity to learn a new distinction, and slowly round a corner to take a different path than the one you’ve been following. I hope that I can play any role in your continuing process of finding a self-care regimen that works for you, even if that role is to show you one more perspective that you can cross off your list because you’ve tried it and have found something more effective. (And if that is the case, I hope that your generosity of spirit leads you to share your new found distinctions with the rest of us!)
Wishing you all health, peace and happiness.