It was 5 o’clock in the evening on December 4, 2002 when standard hospital operating procedure put me in a wheelchair and moved me from the clinic and into the ICU. Earlier that afternoon, I had described my symptoms to a clinic doctor. Unprovoked weight loss, insatiable thirst, frequent urination, blurry vision, extreme fatigue, and the most depressed state I had ever experienced in my 17 years of life. The blood tests then confirmed that I had Type 1 Diabetes. Over my next two days and nights in the hospital, I learned more about my condition and how to control it, mainly how to test my blood glucose, count carbohydrates, and give myself shots.
Fast forward to November 2012 and the realization that I was coming up on a big anniversary of my diabetes diagnosis. After ten years of pricking my fingers to draw blood, regular doctor appointments, and a nearly constant stream of insulin, I decided that I could either throw myself a pity party or a party-party. On December 4th of that year, eight friends and I celebrated my 10th Diaversary over margaritas and Dos XX at a late night happy hour. So how lucky have I been? Of course, I have been lucky with those friends who helped me celebrate and lucky to have my parents, who care a little too intensely at times. But I have also been lucky because of timing. Because if I had been born 100 years earlier, I would no longer be here.
A few years ago, I began researching my family history. To be a familial genealogist is to be obsessed and fascinated by old documents, including photos, censuses, and death certificates. It was with one of these death certificates that I learned the most about Helena, my great-grandfather’s older sister. Helena was born in 1884, 101 years before me, and lived less than 60 miles from where I grew up. Her 1904 black and white wedding photo shows that she was thin, wearing a light colored dress, and a veil on her dark hair. Six years later, her death certificate stated that she died at the age of 26, leaving behind her husband and one child. But it was her cause of death, that caught my attention. “Diabetes Mellitus” was what it said and the certificate further noted that she had been in a diabetic coma for the last two days of her life. Helena had been diagnosed on October 13, 1909 (October 13th also being my eventual birthday) and was dead on October 30, 1910.
While there have been accounts of diabetes for thousands of years, it has been since Helena’s death that strides have been made to turn this disease from terminal to manageable. Helena died in 1910, the first year that the term “insulin” was coined. Twelve years later, the first insulin patient was treated and in 1923 the mass production of insulin began.
According to the American Diabetes Association, in 2015, 30.3 million Americans (or 9.4% of the population) had diabetes. The majority of these people have Type 2 diabetes. Type 1 diabetes, which I have, accounts for 1.25 million people (or 0.39%) of the population, less than 5% of all diabetics.
Type 1 Diabetes is a disease in which my pancreas no longer produces insulin. Type 2 diabetes, also called insulin resistance, is when the body does not properly use insulin and over time cannot produce enough insulin. Why is that a big deal? Primarily because the food we consume is broken down into a sugar called glucose, which we humans use for energy. The insulin moves this glucose out of the bloodstream into the body’s cells. When it stays in the bloodstream, that’s when that “sugar coma” feeling occurs for diabetics. But it has more complications than just that groggy feeling.
My parents and I were overwhelmed when I was diagnosed, we knew of no one on either side of the family who had ever had Type 1. The exact cause of Type 1 is unknown, but it is likely a combination of genetics and an environmental trigger. The familial link in Type 2 diabetes is stronger than in Type 1, but it is also influenced by outside factors such as age, lifestyle, and environment.
Diabetes is walking a never ending, shifting tightrope of sugar management. Too low blood glucose, I liken it to being sweaty while tipsy drunk. My thoughts are scattered, my heart beats fast, and I’m prone to tripping over my feet and worse. And there’s also the threat of a coma. Too high blood glucose, they’re similar to the symptoms I experienced, but if they’re prolonged, there’s a higher risk of complications, like loss of vision, organ failure, amputations, coma, and death.
The balancing pole of this tightrope is weighted heavily by my insulin pump and my blood glucose tester. Multiple times a days, I prick my finger and administer insulin through a push of a button. In the months after my diagnosis, my insulin delivery of choice switched from shots to an insulin pump, a device that could be confused with a beeper, which has been connected to me almost always and has made pants and dresses with pockets a necessity.
Other diabetics give themselves shots or, in the case of some Type 2s, take oral medication. The amount of insulin that I give myself is heavily influenced on diet and exercise but also things like stress, which is hard to quantify. But the pole is also weighted with doctors appointments that include blood and urine tests, something else, and all my friends and family members who listen to me complain, support me, and “wait just a second” while I do something diabetic.
Diabetes is a hard and constant disease that takes unending work to manage. Despite this, it is extremely humbling to think that I am alive and able to live a mostly normal life because of my circumstances. Even more so after discovering Helena, I am thankful that I was born and diagnosed at the time and place that I was. I’m thankful that knowledge of the disease and the medication are readily available. I’m thankful that I have always had health insurance to pay for it. And I’m thankful that I have had family and friends who have supported me and have been patient with me, especially when I do complain.