In a fine essay on HuffPo about Type 1 diabetes, Riva Greenberg conveys how much mental energy is necessary to "stay between the lines" -e.g., keep blood sugar within the narrow range displayed on her continuous glucose monitor:
If you met me...you would have no idea that half my mind space is not free, like yours. It's busy doing what it needs to do to stay between the lines: guessing at the amount of carbohydrates in my meals, then checking my blood sugar to see how well I guessed. If not well, taking another injection or eating.
Or I'm preparing and drawing up my shot of insulin, also guessing at the dose, and remembering where on my body I took my last three injections so I don't inject in the same place which can cause scar tissue.
Or I may be switching my syringes, checking my stock of pen needles, putting on a new sensor, ordering more supplies, and feeling my blood sugar plummet when I only meant to lower it a small amount. Then berating myself for over-compensating...
...That's why the simplest I can put it is Type 1 diabetes is staying between the red and yellow lines all day and night, every day and every night.
Well said. What's more, the incessant chatter that dominates the inner life of people with diabetes (PWDs) can feel like a terrible burden. Much of the time, nearly everyone has what some meditators call a "monkey mind," which leaps constantly from one thought branch to another, one feeling to another. But if you are an insulin-dependent PWD, you have many extra branches for your monkey mind to grasp, and it is generating more noise, more instructions, more screeching, than the minds of non-diabetics. And you feel like you need those branches in order to get through the day. Greenburg conveys a distinct sense of being embattled, grim and weary because of this, which I've often shared.
One way to ease this burden, like every other burden, is to laugh. Chuck Eichten offers an uncannily accurate picture of a PWD's inner babbling about food when things are not going smoothly on the metabolic front:
Okay. Now you need some more. More than that. A lot more than that. Not much more. Not that much. Not that kind. Wait. Stop. Go. Where is it? Do you have enough? Is that enough? Do you think? Maybe the same as last time? Maybe not the same. You'll need some when you're sleeping. And maybe some while you're working...You will need extra. Even just sitting there requires some. Not as much. But some. What did you have yesterday?
The words can seem funny when splattered on a page or a computer screen. But when I've rebelled in the past, when I've gone off the rails and binged or just not cared, one reason was that I wanted my inner diabetic voice to shut up, I just didn't want to hear all the instructions, I was sick of that voice, I wanted peace and quiet. Getting back into the swing of things and developing "good control" inevitably meant ushering in more noise.
The worrying and fretting can be reduced, of course, by healthy habits and a routine that works, and when things are going more smoothly there is much much less confusion than Eichten depicts. But there is still a great deal of necessary self-talk. As Greenberg notes, "I don't know any other illness where so much work must be done by the patient on a daily basis."
Fortunately, it is possible to fully accept the inner noise, to give it room and not feel (too) burdened. It is even possible to embrace it, rather than just bearing it like a weary, fatalistic soldier. Some useful advice on this challenge can be found in a story about the Buddha and a monk named Sona. I've always hesitated to write about my Buddhist practice, partly because others are infinitely more qualified than I am to discuss it, and mostly because I've learned that some people with chronic diseases reflexively cringe and shut down at the mere mention of Eastern spirituality. But I'll break training this time, because if you are a PWD who is sick and tired of your unrelenting D-chatter -or if someone you love is in that boat-- this might help:
When Sona became a monk, he practiced walking meditation day and night, pushing himself so hard that his feet became lacerated, but he didn't feel any closer to enlightenment. He got frustrated. Then he got a visit from the Buddha.
Knowing that Sona used to be a musician, the Buddha asked, "If you tune the strings of the lute too tightly, what happens?"
Sona said, "They break."
"And what happens when you string them too loosely?" the Buddha asked.
"Then there's no sound. When the strings are not too tight, and not too loose, they produce a beautiful sound."
"That's how should you practice meditation," the Buddha told him. "Not too tight, not too loose."
The message, as I understand it, is that too much zeal, a militant and fanatical exertion when trying to focus on the present moment, doesn't work; it causes too much stress and suffering. On the other hand, not enough zeal doesn't work either; it leads to sluggishness, it's too lazy, the mind can't be tuned properly.
The same thing is true of PWDs' approach to our extra mental chatter, and to our disease, and to...just about everything. It's quite possible to find a middle ground between a grim, tight, strained concentration on every aspect of our metabolism and saying, to hell with it, I'm going to ignore this shitty condition. That doesn't mean you should try to get rid of the instructive, life-sustaining D-noise within you. But you can learn to develop a kind of light mental touch. You can learn how to note it without judgment and accept that it is whirring in your head, then just calmly do what your inner guide is instructing -"Four more grams of carbs now...Calibrate the CGM...Big toe hurts, don't ignore it."
You can even learn to feel grateful for inner D-chatter, if it prompts you to act skillfully instead of stupidly. Some PWDs aren't able to summon up wise words and helpful instructions, and that screws them up. If your inner patter is keeping you alive and reasonably healthy, it's worth reminding yourself to periodically give thanks for it.
In 2009, Amy Tenderich wrote a wise piece in Diabetes Mine about staying "in the middle" --not too high, not too low. She notes, "I've stopped fighting it. I try now to look at my BG levels not as a constant battle to be won, but rather as a puzzle to be solved. There's always some small tweak you can make to improve your progress on the puzzle."
But how do you get to that calm space, even when your interior monologue takes the form of "Blood sugar's going down fast and I'm in the middle of dinner! What the hell is going on?"
There are no easy answers. But if a neurotic, thought-tormented diabetic like me can find a middle ground, and at least develop the capacity for a calm and undramatic relationship with his monkey mind, (even if I don't always succeed), anyone can.
I find that a regular meditation practice, and cultivating the habit of mindfulness, has helped enormously. Maybe there are other paths. Cognitive therapists urge us to replace negative self-talk with positive self-talk, and to do so in a disciplined manner; that often doesn't work for me, but maybe it will work for you. Maybe all you need to do is keep singing the Jackson Brown tune, "Take It Easy" and laugh at yourself whenever you start letting the sound of your own diabetic wheels drive you crazy. (I know, I know, I'm a musical dinosaur. If there are rappers who offer the same advice, their CDs should be given as free medicine to young PWDs right after they're diagnosed). Even better, try to embrace those sounds, those wheels. It would be a mistake to think the only choice is to grit your teeth and grimly endure when you hear them, or try to get rid of them.
Originally published @ The Insulin Chronicles
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