Living With Diabetes: On Mortality

Someone, in posting about my blog on Facebook, mentioned that one of the issues it covered was “mortality”. I hadn’t thought that was particularly a subject I was writing about, but today’s post proved me solidly wrong. Of course this blog is about mortality. It’s a blog about chronic illness. In a way, can the two possibly be separated?

The truth is, I think about my own mortality constantly these days. That’s been one of the most predictable and consistent side effects of getting diabetes.

Having your blood sugar out of whack is dangerous. Period. It’s not natural for your body, and it’s not good for it.

Highs are bad. I mentioned the long-term consequences of consistently high blood sugar (amputations, kidney failure, blindness, all that good stuff). It’s very strange to have doctors tell you that consistently high blood sugar can lead to all these things, and then, usually in the same breath, remind you that you are human, diabetes is an impossible disease, and no matter what there are going to be days when you fail. And your blood sugar will be high.

…But highs are bad. And highs lead to amputations. And kidney failure. And blindness. And must be avoided.

…Except that they’re unavoidable. And they’re going to happen. And you have to forgive yourself when they do.

Will I forgive myself, though, I think, when I’m 65 or 55 or, jesus, 45, 35, 30, and I need a kidney transplant? Will I forgive myself then?

I can picture it so clearly – so damn clearly – and in my worst nightmares it’s 10 years from now, but in my standard ones its 30 or 40; I’m sitting there crying in a doctor’s office, being told that I have only days of vision left, or my foot needs to go, or I need to find a relative who will be willing to give me their kidney. And I’ll think to myself “I sure wish I hadn’t forgiven myself for all those highs throughout the years. I sure wish I’d punished myself, worked harder, harder, harder. Because maybe I wouldn’t be here right now.”

The problem, of course, though, is that us diabetics can’t just OD on insulin to avoid highs and keep a few juice boxes nearby in case we overdo it. Because low blood sugar is bad. It is bad in the short term (passing out), but it can be bad in the long term, too.  There have been a few studies recently which suggest that lots of lows can damage the cardiovascular system – probably because the state of having less glucose in your body than you should puts excess strain on your heart. Your blood sugar is not meant to be below 70, 60, 55. Ever. Which is why the non-diabetic body basically never lets it happen.

But there are those of us for whom it is inevitable.

Diabetes care has advanced aggressively in the last 90 years. Stay tuned for a “history of diabetes” post at some point — it’s pretty fascinating! But for now suffice it to say that insulin didn’t even exist until 1921, when two researchers at the University of Toronto (U of T!!!!) discovered that they could take fluid from the pancreases of healthy dogs and inject it into diabetic dogs (note: diabetic dogs = sad face), to prolong their lives.

Before this moment in 1921, people who got Type 1 diabetes just died. Period. There was no recourse except, in certain cases, a super low carb high protein diet that often let the diabetic live a (miserable) extra few months after diagnosis. But that was about it.

If you got diabetes before 1921, you died.

This fact is not lost on me. Time is a lot bigger than we can comprehend; the difference between 1921 and 2014 is, in the grand scheme of things, infinitesimally small. In that sense, I could very easily have been born a hundred years earlier, in which case, my DKA story would have ended not with me crying at the door to the hospital, overwhelmed by my new life, but with me, you know… dead.

In a way, this makes me optimistic for the future of the disease. People with diabetes can now live pretty long lives, if they’re vigilant. There’s a lot of exciting science happening now to make our lives even easier. Or to cure this thing. Maybe 100 years from now someone will be writing a blog (or whatever the 100-years-from-now equivalent of a blog is) about how 100 years ago they used to have to INJECT INSULIN! And TEST BLOOD SUGAR! How archaic!

However, the fact remains that, in a lot of ways, there’s still a great distance to cover. Of the thousands and thousands of facts I’ve read about diabetes since my diagnosis, the worst fact I ever read was in a scientific paper about Type 1 diabetics.

It mentioned that, for 70% of Type 1 diabetics, cause of death is cardiovascular disease.

For seventy percent of Type 1 diabetics.

Seventy. Seven in 10. Not just the majority, but the vast majority.

That means, most likely, that this is how I will die. My heart will give out.

Now, to be fair, isn’t “cardiovascular disease” the leading cause of death among most, diabetic or not? And of course, there’s no reason to believe that will be how I die – I could get abducted by aliens tomorrow or flatline during my middle-aged crisis boob job thirty years from now. Also, it’s possible I hallucinated this statistic – in trying to find it again to research this post I discovered I cannot. (But I don’t think I hallucinated it. I really don’t.)

Plus, although cardiovascular disease is the leading cause of death among all Americans, among all Americans the percentage who will die of cardiovascular disease is only 30. Not 70.

Seventy percent is high, guys.  Statistically speaking, when I read that sentence, I was reading my cause of death. Which kinda blows the mind.

There’s something called “dead in bed” syndrome that happens to Type 1 diabetics. It means exactly what you’d think – you go to sleep and you don’t wake up. The theory is that you go low overnight, and eventually, if that happens enough, your heart finally just can’t pull you out of it. Fortunately, I now have a really cool tool to prevent overnight lows, but for the first few months of being a diabetic, I had no way of knowing if I was tipping low overnight. The low itself doesn’t always wake you up. I read somewhere that dead in bed syndrome happens to as many as FIVE PERCENT of Type 1 diabetics. Which is an alarmingly high percentage.

If you are a Type 1 diabetic, or if you love a Type 1 diabetic, and you are reading this, I’m sorry. I’m not usually this morose, but a chronic disease shifts your perspective a bit. I know I should just, like, use this as an opportunity to enjoy every moment to the max, or some stuff like that, but sometimes it feels more overwhelming than anything else.

Frankly, I don’t mind the idea of dying in my sleep. I’d just rather it happen when I’m 102 instead of when I’m 29.

Remember that piece of crap doctor from the hospital who passed so much judgment on me about my size and about my ability to “manage” diabetes? He got one thing right.

“It’s pretty much up to you how you manage this,” he’d said to me.

Well, he’d been talking about Type 2 diabetes rather than Type 1, and he’d been saying it, I am sure, as the set up to the ultimate “I toldja so” for when I showed up in his ICU 10 years from now, 500 pounds overweight and with a diabetic foot ulcer that would require amputation, but, regardless of his craziness, he still had a point.

I have lost a lot of control over my health in the last 7 months. A lot. To a certain extent, no matter what I do, I am going to have to wait and see if I lose the genetic lottery again and get diabetes complications. Even people with perfect control are subject to it. I will do my best – I have, really, done my best – and will continue to do so for as long as I get the privilege of fighting diabetes with a working body. However, there is a chance that, despite my best, I will still fail. And I will get complications. Or I will die before I otherwise might have.

That’s not something I can control. Nor can I control the fact that I no longer have a working pancreas, that my immune system is so insanely messed up that I now have 2 autoimmune disorders, or that I have crazy food allergies (and have my whole life). These are things I have no control over, just as there are plenty of things to come that I will have no control over.

However, what I started to understand from the moment I walked out of that appointment with Dr. M the week after discharge, and what has been confirmed to me every day over the last 7 months is that, despite all evidence to the contrary, there are some things left to me. Over which I do have control. Starting with what I put in my mouth every day.

Diet and diabetes are, for better or for worse, inextricably linked. I’ve known that from the moment I got this diagnosis – ha, from well before I got the diagnosis. And from the moment I left Dr. M’s office that Tuesday, knowing that I was sitting on one diabetes diagnosis (type 1) and looking at a second (type 2) which loomed in the distance, I began to consider what it might mean to regain control over the few aspects of my health that remained to me.

My diet needed to change.

And for the first time in my life, it did.

I changed what I put in my mouth; not because of shame, or guilt, or vanity.

But because I want to live a really long time, and I want to do whatever I can to stack the decks in my favor.

I’ll tell you what I’m not doing now. I’m not starting a rant about how the overweight ladies (and gentlemen) of the world need to change their ways. I have no idea if you need to change your ways or not – in fact, you probably don’t. Your ways are probably just fine. Check your numbers – and I don’t mean your weight. I mean the actual numbers that have an impact on your health – lipids (cholesterol, HDL, LDL), glucose, A1C – those numbers. Who gives a crap about your weight if the rest of your numbers are fine?

If the rest of your numbers are fine, live. Eat delicious food and do delicious things with your delicious body. Enjoy yourself. Revel in the fact that your body is a perfect specimen – yes, sure, there’s things about it that you’d probably change, but IT WORKS. Right now, right at this moment, there are ten thousand systems in your body that are all humming along perfectly to keep you alive, to let you read these words and sit where you’re sitting and piss and shit and smell and laugh.

The irony, of course, is that before February, 2014, the rest of my numbers were fine. Not amazing, mind you, but not bad at all.

And I hated myself. I hated my body that was working so perfectly; it disgusted me. I felt it was shameful, gross, and meaningless.

I’m not about to pretend that I’ve reached a new level of enlightenment. Hell no. But I will say this: there’s nothing like diabetes to force a shift in perspective.

No, no, no, what I am most assuredly not doing right now is preaching dietary changes to you all. In fact, if your numbers are fine, I’d love for you go out and eat a donut for me. Make it a really, really good one – cake, OK, none of that yeast bullshit, and dripping in glaze. Vanilla. With nutmeg. You eat it, and you enjoy the crap out of that donut.

Of course, the irony (irony, irony, irony!) is that when my numbers were fine, I didn’t enjoy food at all. It was a proxy for my feelings of self-hatred and disgust – consumption was the necessary step between the anxiety and guilt and shame I felt before eating and the anxiety and guilt and shame I felt after eating. I barely tasted food – and not just during my binge eating phase. Perpetually.

Not that it matters anymore.

Because the truth is, my numbers – the ones that matter, I mean – are bad. Thanks to diabetes, glucose – a biggie – is a real number, and always will be. And, like most of you would probably have done in my position, when I realized that I now have a perpetual bad number on that short but critical list of Numbers That Matter, I took a good long look at the even shorter list of Things I Still Have Control Over and made a decision to fight to live as long as possible as hard as I could.

It’s funny, because on a day-to-day basis, diabetes can be ungodly overwhelming. As I mentioned above, sometimes I look at the statistics and it just makes me want to give up.

And yet, in writing this post, I realize that even as I drown in these feelings of paralyzing hopelessness, I am fighting harder for my life than I ever have. I am rigidly attempting to control my diabetes because if I get to that goddamn doctor’s office in 30 (20, 10) years from now and I am told that I need a motherfucking kidney, I want to know that I worked as hard as I possibly could to keep that from happening. That I left it all on the field.

It might still happen.

But so might the alien abduction, or the boob-job-flatline, or the cure for diabetes. They’re all possible. So in the meantime, you should go eat a donut, (and then you should take a picture of that donut and put it on your instagram so I can see it, too), and I will go eat some, like, broccoli or some crap, and then we can both piss and shit and smell and laugh together.

That sounds pretty good to me.