This is the fourth (here are parts one, two, and three) in a series about my teenage years, which were spent almost entirely in a state of defiant self-destruction and non-compliance. It is the hardest part to talk about, so the posts will not be posted one right after the other. Thank you for bearing with me.
Fear is an instinct, a response to stimuli so ingrained that once you get away from the obvious (scary movies), you may not be able to discern a cause. You just feel it.
Not so in this case.
Somehow, I had gotten through my first, and still non-compliant, year of college with that trifecta of guilt, shame, and fear hanging around my neck.* I really shouldn’t have gone hundreds of miles away. I was unprepared to maintain my disease, even at the disastrous level I had been, away from my support system, and my academics had suffered, especially in the first semester. Toward the end of my freshman year, my feet started to hurt. By the time I accepted an invitation from a friend to join her and her family in North Carolina’s Outer Banks, I could barely walk.
Of course, I didn’t stay anything. I was desperately clinging to the possibility that it might just go away. I’m pretty sure I was a less-than-optimal guest, but I don’t remember much about the beginning of that summer beyond the pain. My parents came and got me a couple of weeks later, and there was no more hiding.
I have said before that, though my hometown was one of the larger cities in my Midwest state, the medical care available was far from ideal. Perhaps adequate at best, and it was several weeks before anyone diagnosed me with peripheral neuropathy. While they wasted time with topical creams that just made everything worse, the level of pain I experienced ratcheted up so high, it caused me to spend hours on the couch rocking back and forth clutching and rubbing my feet (and I had taken a couple of 1980s spinal taps and 18 months of hard physical therapy in stride). The habit became so ingrained, I still do it occasionally when I am tired and not thinking.
They also felt the need to put me through an electromyography (EMG), which sends electricity down nerve endings to assess their functionality. In my case, the nerves were already dying. It was so painful, it was the only time my mother couldn’t bear to stay in the room with me.
Now, peripheral neuropathy is one of the most common, if not the most common, complications of diabetes. It should have been a fast, obvious diagnosis. But I was only 20, and my age got in the way of any smidgeon of common sense the available clinicians should have applied.
This was also one of the few times I have had to deal with a missed or delayed diagnosis.
But that wasn’t all.
“Johnny, tell her what else she’s won . . . “
Retinopathy! The kind where liquid seeps into the eye and they have to use lasers to stop the leakage! It comes with a lovely 4-day trip to the Joslin clinic in Boston!
At least that one was quick, if not easy. My ophthalmologist was a friend of the family and his wife was already 30 years into diabetes at that point. There were only four days between my diagnosis and that first laser surgery.
If I am remembering correctly, it was also Joslin that made my neuropathy diagnosis official and started to treat it. It was also the place of my worst blood draw ever, from the inside of my upper arm. Once the pain was manageable, it finally began to sink in that I was at risk of losing my sight and my mobility. Again. The non-compliance chickens had come home to roost. After six years of thinking I could get away with it without consequences, I began to understand what I had done to myself. So that was not just a ‘no’, but a ‘hell no’. Having regained my mobility a mere decade ago, I swore that I was not going to do that again.
It was fear that drove me to change. If this was what happened after six years, what might I end up with after a (shortened) lifetime? Maybe I would die of a stroke in my 20s. Whatever happened, if I didn’t change, the rest of my life was going to be miserable. I am not a masochist, so compliance came quickly. After years of elevated blood sugars, three months saw me drop precipitously to below the diabetic average. And it’s kept me there for the most part. With fear as a motivator, there’s nothing I can’t accomplish!