A super hero and super villain who both suffer from the same condition (diabetes, epilepsy, anemia, or the like). One of them carefully takes care of themself while the other…doesn’t. Which one cares? Which one doesn’t? And do their opponents take advantage of their condition or not?
“The males of the extraordinary semi-aquatic mammal - one of the only kind to lay eggs - have venomous spurs on the heels of their hind feet. The poison is used to ward off adversaries. But scientists at the University of Adelaide have discovered it contains a hormone that could help treat diabetes. Known as GLP-1 (glucagon-like peptide-1), it is also found in humans and other animals, where it promotes insulin release, lowering blood glucose levels. But it normally degrades very quickly. Not for the duck-billed bottom feeders though. Or for echidnas, also known as spiny anteaters - another iconic Australian species found to carry the unusual hormone. Both produce a long-lasting form of it, offering the tantalising prospect of creating something similar for human diabetes sufferers.”
It’s World Diabetes Day, the anniversary of Frederick Banting’s birth. Banting discovered insulin, and without his discovery, I’d have died at the age of twelve. In the wake of the election my diabetes and chronic illness advocacy has been neglected to the point where I am only addressing Diabetes Day now, at ten at night. A weird part of me – the part that has normalized an existence wherein I am always one tiny miscalculation, one computer error, one missed test, or forgotten alarm clock setting away from death – has felt like this wasn’t as important anymore. In the face of Trump’s election, I felt compelled to tackle every social injustice I could find. Suddenly it was as if all I’d done for education, science literacy, women’s rights, and diabetes awareness weren’t enough. Why had I not also been more involved in politics? In racial justice? In environmental protection? I felt ineffectual. Flaccid.
But I’m not a super woman, and I don’t know how to fight every injustice (at least not yet!), and I can’t give up fighting the battles I’ve been fighting so long. And after all, my diabetes advocacy does intersect: for with Trump and his team’s threats to the ACA and the heath care social safety net in general, people like me are at very real risk.
Advocacy requires education, but don’t worry, if you don’t know the story of Banting’s discovery of insulin, it is anything but dull!
You must first imagine a time when diabetes wasn’t a punchline about fat, lazy Americans. Before it was a hashtag accompanying photos of greasy and sugar-filled treats. Before it was something anyone laughed about. It was 1920, and diabetes was a universally feared death sentence that almost always befell children.
Type 1 diabetes, the type I have, is an autoimmune disease. There is no prevention and there is no cure. It is not caused by diet or “lifestyle”, and it does not discriminate; it can emerge in anyone, from infancy through adulthood, of any level of physical fitness. A full understanding of the disease has not yet been reached, but what is known is that it is at least in part genetic, and is likely triggered by environmental factors such as viral infection. A person develops type 1 when their immune system starts attacking their body’s own insulin-producing beta cells. Without insulin, energy from food consumed cannot enter cells. Before the discovery of insulin, this meant certain death.
In the early 20th century, large hospitals would have entire diabetes death wards, usually filled with children, all slowly succumbing to the disease while their grieving families sat by, waiting for them to die. I can imagine what it would have been like to be a child in such a ward. I can tell you exactly what it feels like to die from diabetes, because I almost did. Twice.
The first time was when I was twelve. It started as malaise. I was a bit more tired than usual. I was somewhat nauseated a lot of the time. I started to become emotionally depressed. As the month preceding my diagnosis progressed, I became weaker. I did not know that my body was cannibalizing my fat and muscles for energy, that my blood was slowly turning acidic, and that my organs were beginning to fail. My weight dropped rapidly. I was winded walking up a flight of stairs. My vision got a bit blurry and my thinking muddled. And I was so, so, so thirsty. Like, unless you’ve spent three days in the Sahara with absolutely no water, you cannot imagine how thirsty.
Had I not been diagnosed I would have starved to death. The inability of my body to convert food into energy causing me to waste away, and eventually to die from heart attack, stroke, or systemic organ failure as a result of Diabetic Ketoacidocis (acidic blood), slipping mercifully into a coma first…maybe lingering for a few days. And so was the fate of every child before a young Canadian doctor, Frederick Banting, discovered insulin.
Now picture this in your head: the year is 1922. In a diabetes death ward in a children’s hospital in Toronto, a couple hundred children lie in metal-framed hospital beds. Their bodies are emaciated, some are in comas, all suffered as I suffered. The air is sweet with the smell of their breath and urine, for a diabetic’s breath is like fruit and their urine like honey. Their Gibson Girl mothers weeping, their besuited fathers trying to uphold the emotionless masculinity of their age, their siblings in petticoats and newsboy caps kneeling at their sides. Then a dashing young doctor, Banting, and his partner, Best, enter the ward, insulin syringes in hand. One by one, they begin injecting the children, and by the time they get to the last child, the first have already begun reviving from their comas.
Suddenly, diabetes is no longer a death sentence. It is a disease that could be managed. Children who were skeletal and comatose become plump and active once more. It is the epitome of the inspirational tale. But this is not a story of hope, because that is not where the story ends.
Managing type 1 is both difficult and expensive. Although insulin is nearly 100 years old, patent-loopholes allow drug companies to keep tight proprietary control over the most effective formulae. A lack of regulation of the pharmaceutical industry in the United States means that US patients often pay more than ten times the price for a bottle of insulin than our fellow diabetics in other countries. The insulin that keeps me alive, Apidra, costs between $280-$480 a vial depending on which US state you buy it in – and bear in mind, depending on the patient one month’s supply can be anywhere from 2 to 10 vials. In Canada, the country of insulin’s discovery, the same vial is about $30. Further, effective type1 management means testing one’s blood sugar 8-20 times daily (each of my test strips costs $2, so that’s up to $40 a day), delivering insulin via syringe or pump (a pump runs between three and seven thousand dollars), using a few other medical odds and ends like sterilization alcohol, medical adhesives, etc., and regular doctor visits. The total annual cost of my diabetes medication and supplies, without which I will die, is about $26,000 before insurance.
That cost is not prohibitive, it is impossible. And because of that, I almost died of diabetes a second time.
Before the ACA, I was uninsurable. My type 1 considered a pre-existing condition. After I was dropped from my dad’s insurance, I had to pay for everything out of pocket because of my uninsurable status. Even re-using single-use only insulin syringes to the point where each injection left a massive bruise on my abdomen, even reusing finger-prick lancets until they were literally too blunt to work anymore, even fasting every other day to take less insulin, I couldn’t afford the cost of my disease. In my mid-twenties I began insulin rationing. I would test my sugar only once a day and take the bare minimum of insulin to keep me alive, keep me working my three jobs.
Then one morning when I was 26, it caught up with me. I’d lost 20 pounds in a month – I woke up vomiting that morning: the Diabetic Ketoacidosis from not getting enough insulin was so extreme that I lost seven more pounds in one day. My roommate drove me to the emergency room where I had five IV lines put in, was put on oxygen, intravenous potassium, and spent three days in Intensive Care.
President-elect Trump is already waffling on his stance on the ACA, but that doesn’t stave off the real fear of me, other diabetics, and others who have pre-existing conditions for our lives. Literally, we fear for our lives because we know that people like us were left to die before the ACA. We are hoarding our medications and supplies and taking every step we can to hedge against loss of insurance.
I said this was not a story of hope, but neither is it a story of despair. For, like I said, there is a part of me that has normalized fighting for my life. I have done it, in a very literal sense, every minute of every day since I was twelve and a half years old. And so too have other type 1s fought. And so too have type2s fought. And so too have all those with chronic illness and disability fought. We fight because our lives are worth fighting for. Because an enlightened society recognizes our intrinsic value as human beings, despite the flukes in our physiology. We fight because we know that, despite the misconceptions and stereotypes society has about us, we have something to offer humanity: something immense, something those who’ve never had to fight for there lives cannot understand.
Our bodies may be damaged and weak, but we are strong. And we will take our fight to the steps of the White House, to the feet of the men who want to strip us of our means of survival. Who want to strip us of our Right to Life. We will use our damaged, sick, and broken bodies as blockade. We will use our clever and quick thinking minds. For if anyone knows how to fight, it is us.
Type 1 children, before and after insulin treatment:
Dr. Frederick Banting, Nobel Laureate for the discovery of insulin:
Banting and Best, with one of the diabetic dogs they successfully treated:
every year in Ireland we have the late late toy show right, we get some adorable kiddos to show off toys and perform while the most eccentric child of all (Ryan Tubridy) guides them along
But oh my god while it’s always been a much loved tradition I’m losing my shit and still holding back tears now because this year the first child they had up on stage was a Type 1 Diabetic, who got to demonstrate playing with the American Girl diabetic doll and then DEMONSTRATED ON HERSELF BY TESTING HER BLOODSUGAR LIVE ON AIR
this is so so important oh my god not once in my life have I seen any positive representation for any diabetics, especially not Type 1, especially not on Irish television. After years of the media spreading fear and false facts and generalising all diabetics as unhealthy, at fault for their own disease and a failed life, it means so much to have a tiny five year old do something like that so normally and out of the blue on live television. dont ever tell me representation doesn’t matter, especially for kids with illnesses and disabilities who are forgotten about so much when we talk about these things, if I could’ve seen something like that when I was newly diagnosed instead of hearing that I was going to die at 40 on health programmes or having kids and adults alike saying I was going to go blind or lose a limb or that it was my fault for developing diabetes i can’t tell you how much it would’ve helped me accept my condition and take care of myself. the impact this’ll have on young diabetics is huge
What your doctor doesn’t tell you when you’re diagnosed with diabetes:
1. There’ll be nights when you stay up crying because you can’t get your blood sugar down.
2. There’ll be nights when you wake up so disoriented you don’t know where you are because your blood sugar dropped that low.
3. Trying to not let it interfere with your school and work life is impossible.
4. There’ll be times when you’re so frustrated you’ll just want to tear everything related to the disease off your body and throw it as far away as you can.
5. You’ll always be scared.
“A friend has asked for one of these to be made and embroidered. What a great idea!! For adults and children! Not only for autism but for any condition or illness. Could be a lifesaver in an emergency. If paramedics saw this no matter what the condition they know straight away what to do and what to avoid. Allergies etc 💓💙 home made belt covers with embriodery £8 £1 to post smaller items xx”