It wasn't long after my diagnosis with Type 1 diabetes that I was introduced to the five stages of grief.
Shortly after my release from hospital, I was given a book called Children Have Diabetes Too by my paediatrician. I remember reading the book with my mom, in particular the bright illustrations and my annoyance that the doctors in the story were portrayed as bears—a feature which I thought was stupid and detracted from the otherwise great book.
The book went into a surprising amount of detail about the autoimmune process underlying Type 1 (especially for a book copyright 1984), factors involved in daily management, and complications. My parents did not shield me from the chapter on complications. Throughout my childhood I had known that I had been very sick and almost died as a baby, and that I had to let my parents know immediately if there were any changes in my limited vision or I could go blind. My parents were not into trying to hide me from harsh reality. As a nine-year-old, however, I could not understand why there was a picture of an orange in the chapter about complications. It was only when I saw the book years later, flipping through the pages after dredging it up from a long-forgotten box of childhood memories, that I realized it was a photograph of the back of the eye showing diabetic retinopathy. The book was blunt about lows, too—depicting the main character skipping an afternoon snack, playing hockey, and then passing out. The unfortunate truth was that back in the late '80s and early '90s such reactions were not nearly as uncommon as they are today.
One concept introduced in the book which stuck in my mind was the five stages of grief. I don't think they were called that, and I did not come across the name Kübler-Ross until my introductory psychology course in university. But the stages of denial, depression, anger, bargaining, and acceptance were covered thoroughly in the pages of that book, colourful illustrations and all. The book even pointed out that not everyone experiences all five stages, or experiences them in the same order.
When I was first diagnosed I didn't really understand what diabetes was myself. I did not fully grasp the fact that I would have to take injections for the rest of my life, at least not until the trip out of the hospital, my mom carrying an enormous bag of insulin vials, test strips, meters, syringes, alcohol swabs, and logbooks. I stopped dead in my tracks on the landing of the stairwell in the middle of the hospital lobby and burst into tears, tears that perplexed me at the time.
A few nights later, after my evening blood test and snack, I lay in bed as my mom tucked me in. Suddenly I looked up at her and asked if I was going to die. "Of course not," she said. "Why would you think that?"
"Because it's called die-abetes," I replied, sniffling.
The only stage I clearly remember going through immediately after diagnosis was anger. Grade four was a rough year for me, and although I blamed it on other things—I hated math, I hated braille—my diagnosis with Type 1 diabetes within the first six weeks of the school year likely played a big role. I remember feeling mad at the the entire world. In one of my angriest, most rage-inspired moments I took my outstretched arm and swept it along the length of the bookshelf that ran along the wall above my bed, emptying the entire contents onto the floor. Not quite satisfied, I grabbed the pillows off my bed and hurled them with all my might at my closed bedroom door. Then, I lay on the pillowless bed and cried. I think my anger was as much out of fearing the unknown as it was anger at the disease itself. And eventually, my anger dissipated.
Not long after my diagnosis my mom answered the phone one morning, exchanged some hurried words with my dad, and rushed out the door. When I arrived home from school that afternoon, she told me that a girl a few years older than me, who I knew and who had been diagnosed with Type 1 the previous year, hadn't woken up that morning. Her mom had called my mom in a near-hysterical panic, and my mom had arrived at their house the same time as the ambulance. "Don't worry, Mom," I reassured her after hearing the story. "That will never happen to me."
"I hope not," she said, "but that's why you need to be careful. Always be careful."
Within the first year of my diagnosis we had encountered most of the curve-balls diabetes can throw. We had gotten through flu season, birthday parties, exercise, restaurants, high blood sugars, ketones, and severe lows. I had become used to the routine of blood tests and injections, and was able to test without supervision, although my parents still helped with all my insulin doses. I was a model diabetic, following my medication and diet regimen with no hint of complaining. This pattern continued well into my teenage years.
One thing the book I'd read after diagnosis failed to mention was that, for kids, the stages of grief could be delayed for years. After finishing the book I had been left with the mistaken impression that after the first year, everything was fine. I have a theory that, for kids, the stages are often delayed until the teenage years.
For me, the teenage years brought the first stage: denial.
My main diabetes-related memories during my teenage years are of lows. Frequent and often severe, I was completely hypoglycemic unaware, and often had no idea that my blood sugar was dropping. Lows struck most often in the early morning, late afternoon, or after exercise, corresponding largely to the peaks of NPH.
I was not a bad diabetic as a teenager. I continued to follow my diet and take my injections … mostly. One of my only acts of true rebellion came when I was about 14 and rang in a blood sugar of 19.5 mmol/L one Saturday before lunch. My mom launched into a lecture about how I had to start taking responsibility for my diabetes, and my response was to tell her that I would—I would simply never eat again. An hour later I was sitting on my bed when I was suddenly overcome by a wave of dizziness and strange sounds coming at me from all directions. I woke up a few minutes later lying on my bed, completely confused. I managed to make my way down the stairs where I announced that I thought I’d just fainted, and a blood test confirmed that I was low.
Yet, although that was my one and only attempt at skipping a meal, I passively resisted taking responsibility for my diabetes. My mom implored me to carry a fanny pack while I was at school, but I refused because they were ugly—and besides, I’d be able to get food from my locker if I was low.
It was only when harsh reality stepped in that I finally changed my thinking.
On one particular day in gym I began to feel low. I figured that the period was almost over, and that lunch block was next, and I could just get something to eat then. Near the end of the period I began to realize that something was seriously wrong. I asked if I could go to the bathroom and, when permission was granted, ran from the gym. In the bathroom stall, laying my forehead against the cool door, I could not remember why I had asked to leave. I returned to class, and my memories from there are a hazy blur filled in by others. After the gym period I somehow made my way upstairs to the locker that I shared with a friend. I still knew something was wrong, but not what, and asked my friend several times if she could find my brother. She asked if I was low, and I replied that I wasn’t—and proceeded to collapse. I vaguely remember lying on the floor staring up at the fluorescent hallway lights. My friend somehow managed to make me sit up and eat, despite my hysterical laughter and demands to know what the Oreos she thrust into my hand were. That incident shook both of us up, and for the next several days she kept a protective eye on me. My diary entry of April 30, 1998 documents my change in thinking, and also my shaken realization that things could have been much worse:
So it ended up fine, because of [my friend], and I’m so grateful that she knew what to do and actually did something. I’m going to carry a [fanny pack] now with candy and food in it. What really freaks me out is what if [my friend] hadn’t been there?
I had experienced severe lows before, but only in the safety of my own home, where my mom or one of my brothers would notice that something was wrong. Suddenly, I realized that lows could strike anywhere, even outside the safety net of people who knew what to do. That incident scared me into taking some responsibility for my diabetes, but I still kept one foot in denial. My parents received several phone calls (on my new, then-still-rare cell phone) from restaurants, where I sat with a group of friends and a steaming plate of food in front of me, declaring that I had forgotten my insulin. After several trips downtown to deliver the medication, my parents refused to do it any more. Lows continued to plague me. Ten months after my severe low at school, on Christmas morning of 1998, my promise to my mom that I would always wake up for her was broken. A year after that, I switched to an adult endocrinologist who moved my NPH injection to bedtime—which meant I had to take three shots a day, but greatly reduced the number of severe lows I experienced.
During my last year of high school and into my 20s, I was so scared of lows that I preferred to let my numbers run high. It wasn’t that I was bad—I still took my injections, although I sometimes failed to follow my diet—it’s just that I wasn’t aggressive at all. I continued for about five years with an A1c in the 8% and 9% range, oblivious to whatever long-term damage I might be doing to my body.
And then, in my early 20s, the second and third stages finally hit: depression and anger.
I’m not sure what prompted it, but it was during my early 20s that I read my first diabetes autobiography, Needles: A Memoir of Growing Up with Diabetes. That was followed by half a dozen others. And one thing I noticed about all of them was that the memoirs always ended in complications.
Suddenly, the full force of diabetes and its implications seemed to hit me all at once. I went through an intense period of both anger and depression. Why me? Diabetes sucks! How can I possibly keep this up forever? I hate this. What will life be like when I’m old? If I live that long … I had a private blog on LiveJournal at the time, and I spent months simultaneously railing at diabetes and feeling sorry for myself.
It was at this point that a friend commented on one of my posts, suggesting that I type “diabetes” into the community search box. Which I did. And thus represents my discovery of the Diabetes Online Community (DOC). A place where I could discuss the latest regimens and the experiences of blood sugar swings, the ups and downs and hopes for a cure and fears of complications, things that no non-diabetic understood. For the first time in my life, even though I had known kids with Type 1 growing up, I felt like I could talk to people. I felt like I wasn’t alone.
And hence began the fourth stage: bargaining.
Something else the book failed to mention was that, for adults, the stages of grief may never end. They may continue revolving, popping up now and then before passing through to another.
And so it was that, about seven years after beginning to pour all my energy into diabetes, I hit the wall. I burned out. I felt defeated. I had tried the hardest I could possibly try and had failed. I felt like there was no point in even trying anymore. For about six months I stopped trying. I ate without counting carbohydrates. I forgot boluses and didn't think twice about it. It took three months for my A1c to jump from 7.1% to 8.5%.
After six months, I snapped out of it. Unfortunately, it's been two years and I still have not recovered the same control that I had before that period. I've vowed that I will never let it happen again, but I look ahead to my life—50 years, if I live into my 80s—and I'm sure there will come another period, at some point, where I hit a wall and burn out.
Sometimes, I feel like the stages of grief rotate on a daily cycle, sometimes even in the same day. The denial that can set in when there's a day of good numbers, feeling as if just maybe you can slack off a tiny bit. The bargaining on a day of riding the rollercoaster, hoping that if you behave maybe things will sort themselves out. The defeat and depression after a day of highs; maybe there's no point in bothering. The frustration, perhaps even anger, that wells up when you have done everything right and a high reading still glares back from your meter screen.
It was over two decades ago that I first encountered the stages of grief in a book about Type 1 diabetes written for newly-diagnosed children and their families. Through this montage of memories and reflections, there's been no mention of acceptance. I found myself wondering if maybe acceptance never came. Maybe that's what made chronic illness different from things like death. Maybe, I would never get to that stage.
I was diagnosed with Type 1 diabetes 22 years ago today. It was even a Tuesday, like today: October 8, 1991. It seems a lifetime ago. But recently, in the past year, I have seen glimmers of changes. I have stepped back, and tried to take diabetes one test at a time. I have rebalanced other areas of my life, and that in turn has rebalanced some of my emotions around diabetes. I've tried to temper emotional reactions to readings—but I've also let myself realize that sometimes, emotions are okay. And, although I can't yet identify anything positive having diabetes has given me, I'm able to imagine that one day, I'll find something. Perhaps, in a way, this is acceptance, or at least the first glimmers of its arrival. Maybe it does exist, after all, and I imagine I'll get there eventually.