I remember vividly how vulnerable I was, trembling behind tears as I sat in my endocrinologist's office for the first time after diagnosis. Still quite frail after 5 days in the hospital, I endured a seemingly endless onslaught of new information about what was required of me in managing my condition so that I might live well with diabetes. But can one really live well, in a state of chronic illness? Isn't illness fundamentally the opposite of wellness? "Just make the best of things, and try not to think about the future for now," seemed to be the message I was getting from my doctor. I would always be diabetic from now on, he had said. And if he could be considered mercilessly direct about anything, it was that.
Compassionate, attentive and supportive as they were generally, however, it was never with the help of my endocrinologist or dietitian that I would learn what it really means to live with a chronic health condition. In the end, medicine has only served to prop up my ego, crutch after crutch after crutch, since the moment of diagnosis. It began with synthetic insulin and the suggestion that I substitute diet soda for regular. I was told I could still enjoy burgers and fries, so long as I didn't eat a whole order of fries all by myself. Things didn't really have to be so different, it seemed, and that was exactly what I wanted to hear. Please, oh please, tell me more about this diabetes of convenience. At one point, I had become curious about nutrition's role in health and was told by my dietitian that there was essentially no difference between organic and conventional foods. And later, when I received test results indicating elevated protein levels in my urine, I was told there was nothing I could do that would change things and that I should just take the pill that had been prescribed.
And slowly, the truth began to sink in... Even though much of what I was being told did seem easier than changing my whole lifestyle, none of it made any sense.
All that justifying I'd done to co-workers who had looked at me sideways as I helped myself to a slice of someone's birthday cake, all the lecturing I'd barked at folks who told me I shouldn't have this or that because I was diabetic... It was all just excuses. I didn't want to give up those comforts. I didn't care if I now required insulin. I would have my cake and eat it too. Even the so-called "education" I'd offer to people who thought they knew something about my Type 1 diabetes, simply because their great aunt had Type 2 followed by gangrene, was based on total bull. "Type 1 is SO different from Type 2, and here's why..." I'd say. I was both defensive and defiant, and anyone who told me I couldn't have a doughnut would have to eat their words just as soon as I ate that doughnut. It wasn't a problem, I told myself, and readily preached to others; I'd just take my insulin like a good diabetic, and all would be fine.
But what rotten luck for those Type 2s, I thought, to be caught up somewhere in the Purgatory of insulin deficiency - not quite with, but not fully without. If only they could be fortunate enough to have access to a super-genius insulin jet-pack like mine (my insulin pump, that is). I mean, how could Type 1 really be more serious according to doctors, when it seemed so much easier to manage?
The answer, of course, was that my medical experience of diabetes was an inauthentic one. Synthetic insulin was just a crutch, masking the true severity of my condition, and though I didn't realize it at the time, I understand now: It is only by discarding all crutches that we learn the strength to walk again.
Now, my confidence builds with every new step, because progress is again my own. Still, having said no to insulin and other pharmaceutical drugs doesn't mean I'm suddenly not diabetic anymore. Flattered though I may be at the idea of such hopeful re-branding, I know in my heart - even with mostly normal blood sugars - that I am not yet well. On the contrary, if anything, I'm more truly diabetic since having come OFF insulin than I ever was while ON it.
It seems virtually impossible these days to remain in denial about my condition. In fact, for the first time since my diagnosis visit to the ER, I am seeing just how sick I really am. In most cases, any arising impassioned carb-cravings or sweets-cravings are met very quickly with the cold, wet blanket of having to decide whether they're worth reconnecting to my insulin pump. The answer remains: No.
And in fact, a moment of weakness several weeks ago has resulted in my redefining the term "cake walk". To me, it now means less "something that's easy", and more "the 1-2 hours I must spend walking at a moderate pace, in order to maintain a safe blood sugar should I indulge in even just one small bite of chocolate cake or anything floury or sweet". (Perhaps this story helps to explain the Jane Austen-esque dramatics of my chosen title for this blog post. And for those willing to see, my sick body's reaction to certain foods can offer insight into how much work a *healthy* body must regularly do to compensate for such foods. In this light, an eventual burnout via diabetes isn't really so surprising... And that's not even taking environmental factors like stress and genetics into account!) Much as my smarter choices do outnumber my poorer ones, discoveries such as these are still quite emotional. In fact, in facing this new reality, I have in recent weeks found myself drifting into very dark places. Once, I even asked myself - in all seriousness - whether a life without chocolate was really worth living... True story. Fortunately, I was able to laugh at myself almost as quickly as the thought arose.
But forget the cake for a minute. The harsher reality is that some vegetables will also cause my blood sugar to spike. Of course, I avoid sweet potatoes (which I love), but even too much rutabaga, corn or carrots can send me chasing my blood sugar for a moment. And so I must be extra careful not to force myself into a "corn walk" situation as well... because, believe me, when I'm already cutting out so many foods I enjoy in order to keep off the insulin, these little blood sugar temper tantrums resulting from effing *vegetables* are enough to set off my water works. But this is the reality of diabetes, and the truth of my condition is a bitter one to swallow.
On other days, food isn't even the greatest challenge... It's lack of energy. I get impatient with myself and expect to be bouncing off the walls after what seems like plenty of sleep, but in fact, my body seems to be perfectly happy just getting MORE rest. It can be frustrating at times; so I just try to keep in mind that a place of restfulness is a place of healing.
What these apparent limitations give back to me, however, in finally being able to see my body's true state, is the opportunity to begin to work toward health from a more honest place. Just like reading a map, it's difficult to know how to get to where you're going, if you don't really know where you are.
The day before I went off synthetic insulin, I was recounting my diagnosis story to a group of new diabetic friends, sharing with them that my internist doctor at the time had tried to blame my dramatic weight loss on anorexia. "And I've never had an eating disorder in my life!" I told them. But as I considered later how I told the story, it occurred to me that perhaps, in fact, I did have an eating disorder. Maybe we all did. Maybe that's what diabetes is... It's clearly a digestive disorder. And digestion is clearly impacted by the foods we eat or don't eat. My problem seemed to be less of an overindulgence (obesity) or avoidance (anorexia, bulimia) issue, however, and more an issue of balance or even indifference. This is not to say that ALL these conditions aren't merely symptoms of deeper physiological and/or psychological imbalances. Honestly, I'm more inclined to consider the whole person when it comes to health, but the idea of re-categorizing my diabetes as "Type 1 Eating Disorder" certainly was a challenge to my previous way of thinking.
In any case, I'm less inclined these days to want to sugar-coat any health condition, Types 1 and 2 diabetes alike. Having been off the insulin for nearly 11 weeks now has already allowed me a glimpse into the very real possibility of a disease-free, drug-free, addiction-free me - truly a rare perspective in this, our disease economy.
For me, diabetes is NOT life; neither do I wish to believe that it is FOR life. But how has any sane person ever hoped to change her reality, without first changing her choices?
"Let them [who don't mind the consequences] eat cake." ...But none for me, thanks.
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