Editor’s note: We strive to provide a complete picture of life with Type 1 diabetes. While we love sharing inspirational stories, we want to make sure to acknowledge the difficulties of managing a chronic condition over decades. Aaron D. Johnson sent us this honest account, and we thank him for it.
The world of a child is an amazing place. It’s a medley of bicycles, ballgames in the sun, building forts, sledding in the snow, birthday cakes and Christmas lights. What child is going to pay any attention to dry skin and constant thirst when there is so much to do? Childhood is a time to run and play, to get dirty, soaking wet, or covered with snow. The only need is to race home after school to catch a favorite TV show and then charge outside again to play superhero among your superhero friends.
Then, one day, you are just too tired to get up from in front of the television. Your tummy hurts and your dry skin is flushed. Your mother is talking to you, but you can’t understand what she is saying. The bright, kaleidoscope of childhood is replaced with a blur of hospital images: doctors frowning with concern and talking in low, serious voices; nurses looking at you like you were the walking dead; endless medical tests; waiting rooms and gurneys behind curtains; and, of course, the needles. Always the needles.
I was six years old when I was diagnosed with Type 1 diabetes. In my case, it is a form known as brittle diabetes, or Labile diabetes. This is a fairly rare form of diabetes that causes wide blood sugar swings without any reason or warning. My childhood became one requiring constant monitoring of myself and by the adults in my life.
There was no more just running free; my backpack carried my diabetic supplies and emergency orange juice and became my constant companion. Other children would drop their backpacks wherever and whenever they pleased. My backpack was tied to me with an invisible cord. I was always aware of its exact location and always had it within reach. It became my lifeline; it was life.
Within a year of my diagnosis, my mother joined the Alaska chapter of the American Diabetes Association and was on the Board of Directors for the next six years. Together we traveled around the country, talking about my experience with the disease and learning about its impact on the lives of others. Even as a child I was awed by the wide range of lives that this disease struck, and the stories of bravery and heartbreak that came out of the struggle.
Young as I was, I became an advocate for finding a cure for diabetes, and a teacher, furthering understanding in others on its devastating effects. Where other boys could accurately quote statistics on any player in the NFL, I knew the exact milliliters of insulin needed for any given blood sugar reading. When I was 11, I was interviewed by the local news about the glucose monitor that had just become available to the general public. Of course, being a boy, toughness and bravery were a matter of pride, so I blithely lied and said that its use was absolutely painless.
Diabetes became my Cause. I was on a Quest for a Cure. I was an Advocate for Awareness, a Defender of Diabetic Rights. In 1990, I traveled to Washington D.C. to speak on the importance of the Americans with Disabilities Act. There I met with the Alaskan senators individually, explaining the need for this piece of legislation. The ADA was signed into being on July 26th of that year.
I stayed on top of any new development in the arena of diabetes. I went from needles to a pump. As the internet grew, I became involved in websites and chat rooms about the disease. I railed against the high costs of diabetic supplies and equipment. When the manufacturer of the insulin pump improved their product, declaring the old model obsolete and no longer supported, it forced customers to meet the exorbitant $5,000 price tag. Through the internet I argued – successfully – that the flaws in the product that required a new model was the company’s responsibility and that we should not have to pay for their errors. Watchdog of Diabetic Profiteers was added to my legend.
But, as history has shown, fighting a war on too many fronts is a losing proposition. If I took a new job, I had to face at least a year of no insurance due to my pre-existing condition, leading to having a second job to pay for my diabetic supplies. This was before the Affordable Care Act outlawed the practice of barring people with pre-existing conditions from coverage. Even with insurance, the deductibles or copays often meant the continuing need for a second income.
Then there were the times when a sudden spike or drop in my blood sugars disrupted my ability to work. I have lost a few jobs because of this. Oh, not because of the Diabetes! No! Remember the Americans with Disabilities Act! No, no; there was always some other reason. Coincidentally, this reason would come up within a month after a diabetic episode at work.
I am tired now. The devastating effects on the body have finally caught up with me. The increasing medical expenses from the damages of diabetes and the physical debilitations left me with no recourse but to file for Social Security Disability. Diabetes has continued to tighten its grip on the quality of my life. It is time for someone else to take up the banner, to continue to teach and work for change.
From this last part, you might think I am an old man, gray haired and stooped with age – the toll of a hard life written across my face and in my shuffling walk. This November, I turned 46.
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