LOW MOMENTS

Twice I’ve held my daughter in my arms unconscious and not breathing, praying our intervention was not too late. But by the grace of God, it wasn’t, though I choose not to dwell on those moments if I can help it.

There were other scares, too many others, that I only learned about later. A call from the paramedics or her brother or her roommate or her after the immediate danger had passed. I have no mental picture for those, but that makes little difference. It’s too much to think about even now, years later.  

Type 1 diabetes is a strange beast, full of nuances and oddities. Perhaps its greatest eccentricity is that, at any given moment, the treatment can be a bigger threat than the condition itself.

The actual disease robs a body of its ability of make insulin, causing blood sugar to spiral up and out of control. This takes a toll on key organs like the kidneys, liver, and heart; but high blood sugar needs years to threaten a life. It’s the biosimilar insulin we introduce to keep our blood sugar in check that can claim a life, quickly if we’re not careful, by causing blood sugar to drop so low that the brain simply shuts down. All it takes is a simple miscalculation of dose or food or exercise or some inconsistency in any other of the myriad forces that influence glucose levels. Sometimes the reasons are unidentifiable—proof of the complexity of blood sugar control and how little we truly understand it.

Not all diabetics struggle with frequent severe low blood sugar. But for my daughter and me, it can come out of nowhere for no traceable reason. And it comes often. What makes it worse is that if you experience frequent low blood sugar your brain begins to normalize it and will stop sending the early warning signals until the situation is dire. This is called hypoglycemia unawareness, and it’s extremely dangerous.

Today, most insulin pumps work in a closed loop system with continuous glucose monitors (CGMs) worn on the body. When the CGM measures falling blood sugar, the insulin pump will automatically turn off until the blood sugar stabilizes either on its own or with food. But these systems are brand new, only coming on the market in the last few years. They are not a perfect answer, but before them, severe low blood sugar was a looming threat that anyone with T1D had to always be prepared for—sources of sugar tucked away in pockets and purses, glove boxes and backpacks.

Normal blood sugar for someone without diabetes is 70-100 mg/dL, give or take. Hypoglycemia, or low blood sugar, sets in when blood sugar falls below that. Severe hypoglycemia is categorized as blood sugar below 40 mg/dL. Most non-diabetics will begin to experience the tall-tale signs of shakiness, tiredness, or irritability if their blood sugar drops to 75 or 80. Before my daughter and I got our closed loop insulin pumps, it was not uncommon for either of us to feel nothing until our blood sugar fell to 50 or even 40. But then it could be a matter of minutes before we needed someone else to step in.

I drove myself home from work one day, and walking in the house, I felt a bit off, a little low—maybe 65 or 70, I thought. These numbers would significantly impact a non-diabetic, but they are almost a non-event for someone like me. I tested my blood sugar and the meter read 24. I thought it had to be an error. I was fine, really, so I tested again. The reading was the same. There’s no explaining why I was still conscious let alone unaltered.

A blood sugar test takes less than 10 seconds. And in that amount of time, I swung from fully functional to completely lost. I knew something was wrong but had no idea what the problem was. I knew I had to do something but didn’t know what that was. Open the package on the counter? Close a door or a window? These were the things that went through my mind. I made no connection to the test I had just done seconds before. I began to pace nervously, frustration setting in but with no concept of why.

“Type 1 diabetes is a strange beast, full of nuances and oddities. Perhaps its greatest eccentricity is that, at any given moment, the treatment can be a bigger threat than the condition itself.”

I know it sounds irrational, but that’s exactly what severe low blood sugar is. You lose all cognitive ability, all common sense, as the brain starts to shut down system by system trying to conserve energy.  Eventually, it will shut down your autonomic nervous system and your breathing, your heart will stop. So, I kept pacing, panic and paranoia rising until I started to cry.  I was home alone with no one to direct me, no one to step in and take over.

Then, without explanation, I had about three seconds of clarity. The right synapse had sparked. There was a bowl of candy corn on the counter, and I filled my mouth before that flash of cognition flamed out again. I stumbled to my room and collapsed, unconscious, on the floor. I have no idea how long it was before I came to, the candy having done its job, but based on the typical time it takes to recover from a severe low, it had to have been 20 minutes or more. Then I crawled into bed, completely spent, and slept until my husband came home and found me there.

These things just happen.

As I said earlier, I don’t like thinking about the scares we have faced. But the first time I told a friend about holding my daughter all but dead, I was completely calm, factual, as if describing a scene from someone else’s life. My friend was crying. Anytime my daughter or I announce our blood sugar is 40 while we stuff fruit snacks or Skittles in our mouth, no one in the family gets alarmed. “Need help?” “Nope.” And everyone just carries on. In our family, low blood sugar jokes are not considered in poor taste—at least not by us. Though others might shift their weight or overt their eyes nervously.

The reality is that our reality, our baseline, is just different than most families. I might sound a bit detached or in denial, but I can assure you that could not be less true. I think it’s just that our brains have normalized it to some extent and stopped sending early warning signals of danger. Plus, we are a family that talks about everything—lots of calm if/then dinner conversations. And we use humor, be it gallows humor at times, to disarm fear. I truly think it helps. In all honesty, if we allowed ourselves to quake every time severe low blood sugar disrupts our lives, we’d get very little done. And life might seem a bit heavy. That’s just no way to live. No way at all.

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