aiming for grace

starting a new kind of balancing act.

For the most part I accept the fact that I have diabetes. At times I rail against it, but deep down I know that it is what it is. After writing this blog for couple of years now I have come to feel a far greater peace about what diabetes means in my life, the struggles, the annoyances, the discomfort and the down right boredom that accompanies the unending routine of it all. In a word, I've accepted the reality of life with diabetes.

What I want now is to actively balance that reality where I can. With all the discomfort diabetes brings, I want more comfort in my life to offset it, period. Which means I want a new couch, down filled, like a cloud in heaven that I can fall into at the end of a long, busy day. I want clothes that don't constrict me even though I can get away with looks that are far more "body hugging". Not dowdy but no more discomfort just for styles sake. More comfort where I can get it because I have to be uncomfortable on an ongoing basis, thanks to diabetes and all the bleeding and poking and inserting and ripping out it requires. I'll deal with that discomfort yes, but I'm getting that new couch to fall into too, thank you very much.

Diabetes also makes me feel weak sometimes. I can feel literally weak when I'm low or high, and emotionally weak when I'm worn out by one too many nights up dealing with this or that diabetes related task. Or because I've been on the inevitable blood sugar roller coaster. I also feel weak because I'm still recovering from my 2nd frozen shoulder, and still healing from the surgery in the first one for the frozen shoulder there. Between the two of them, it's been 4 years of shoulder issues and pain (with an unrelated surgery thrown in for good measure), which means I'm not too strong in my upper body. I feel weak physically and that has me feeling weak emotionally. Well in the spirit of this new way of looking at things, I also want to bring balance to this aspect of my life with diabetes. I want to get stronger so I'm starting yoga, very slowly, very, very slowly, but starting nonetheless. Where I can I want to balance my sense of weakness with a growing sense of physical strength. Where I can, when I can.

You know, this is turning out to be an interesting exercise. Taking an aspect of diabetes and seeing what the opposite to that aspect might be and then actively going after it as a counter balance is a pretty amazing thing. Acceptance, at least in this case it seems, can beget opportunity! If diabetes is this, what is it's counter balance? Uncomfortable physically? Find more comfort physically. Weak physically? Find ways to get physically stronger. Tired and worn out? Find ways to get rest, or time out, or be still. Ying and yang. No and yes. Diabetes can definitely suck but I have it, regardless of that fact. So I'm starting to see what opportunities it offers to find pleasant, healing balance. I'm starting to at least see and test the idea more deliberately. Because at the end of the day, diabetes is what it is, so really, what have I got to lose?

more gentleness.

 

I been thinking about gentleness lately. Gentle isn't the first place I go when dealing with my diabetes that's for sure. For so long I've felt hindered by the regimen of my life with this disease, annoyed by the many tasks it imposes and all the little details I have to attend to because of it. I've lived with a low grade feeling of irritation in my life because of all the little physical intrusions and the unending nature of diabetes. 

Well just recently it's started to occur to me that a lot of that irritation I feel has actually been directed at myself. I've internalized the feeling to such a degree that in a very real way, I blame myself for having got this disease and worse yet, for having to live with all the annoyances and worry and discomfort that it brings. Only now am I beginning to really see how much I blame myself for having diabetes.

This is strange to me. And sad. It doesn't make sense and yet, there it is. I've been kicking myself in ass about this disease in one way or another for the last 22 years. Amazing!

Which brings me to the subject of gentleness. I've written about it a couple of times in the past, but given how many posts I have written overall, it's most certainly not a theme I've consistently explored. For some reason now though, slowly, slowly, gentleness, as a concept, as a healing tool, as a practice, is coming to mean a lot more to my picture and experience of living with diabetes. It's only a formulating idea at this point. I honestly don't exactly know what "more gentleness" looks like yet, but I plan to actively pursue it going forward. Does it mean something as simple as more massages in my life, or maybe a day off here and there for no particular reason? Or maybe it's just permission to linger a little longer when I'm doing something that's enjoyable, like reading one more chapter of a great book rather than doing that "pressing" chore, this very minute. Or maybe it's just sitting in the sun and just being still for a while. Still, open minded, quiet. I really don't know yet, but I do plan to start finding out more consciously what more gentleness looks and feels like for me. I've learned how to take shots and blood tests and carb count and wear the pump so it seems like learning how to be more gentle to myself is a skill development I can tackle. Given all that I know how to do for the technical maintenance of my disease, it seems high time to get better at the care and feeding of my heart and soul in the process. And learning how to be more gentle to myself seems like a excellent place to start!

there is much to be grateful for.

It's been a couple of weeks since I've posted here. I keep asking myself if there's something I want to write about vis-a-vis diabetes and the answer keeps coming up no. Not no emphatically or full of emotion. Just a quiet no, like there's nothing much to say about it right now. Which a good thing quite frankly, because it represents a new level of acceptance and equilibrium around the subject of this disease in my life. Diabetes still rocks and rolls, it still messes with my plans and my day but for some reason that fact doesn't seem to upset me quite so much lately. And I think that is, in great part, because of being able to write this blog to a caring audience and in return, receive such kindness and support from so many people out there. This blog started out as a voice in the dark and what I've found over the past few years is a place of great warmth and lightness and comfort. Which I carry with me everyday, which means I'm less frantic about it all for longer periods of time. It's not to say that I want to stop writing this blog or that I won't need to use it to rant or grieve again, but for now, for this period I feel a new level of peace I've never experienced before. Peace, acceptance and though I'm still sad about all diabetes means and brings to my life, it seems to weigh a little less heavily on my soul these days. Which is, quite simply, a great relief.  

And for that, this quiet, lighter period, I am forever grateful to everyone who has read this blog and commented and sent strength and validation and kind wishes when I've needed them the most. Oh yes, there is much to be grateful for!

"when thumbs up is no comfort"

 

Did you see the article, when thumbs up is no comfort by Jan Hoffman in this Sunday's New York Times? What a wonderful essay about how our culture approaches illness and disease (cancer in this case), about how we generally expect people dealing with health issues to buck up and inspire us, among other things. "'Whether you're a celebrity or an ordinary person, it's obligatory, no matter how badly you're feeling about it, to display optimism publicly', said Dr. Barron Lerner." The article goes on to question this cultural norm, articulating the pressure it can put on the person dealing with the disease or chronic illness. "While many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome." 

 

I'd go further to say that the pressure and expectation to always "keep one's chin up" can drive a person to denial or the dismissal of the magnitude of the reality of the situation at hand because, hey, at least it's not, insert "worse disease" here. Conversely, a person can come to feel that there's something fundamentally wrong with them because they can't maintain "a happy, brave face" day in and day out. I remember when I was first diagnosed with diabetes that a number of people, both friends and acquaintances, said to me that I should feel lucky because at least I didn't have cancer. On one hand I'm sure that they were trying to "look on the bright side" of what had in fact happened to me but the underlying message was so dismissive and erasing of the experience that I was actually having. I'd just been diagnosed with diabetes, a life threatening, unending, difficult disease that now meant that I'd face struggles both big and small, every single day of the rest of my life. Yes, it wasn't cancer, but still diabetes wasn't exactly a walk in the park either. For years I've struggled with the deeper pressure those comments implied, that I was supposed to feel lucky that I'd only gotten diabetes given all the diseases I could have, and as such, should put on a sunny face and get on with it. 

The truth of the matter is that it's only been through not always being upbeat and cheery about having diabetes that I've actually been able to find some of the inner strength and wisdom to use this experience as fuel to a more joyful, present and authentic life. And that strength and wisdom has only become apparent to me recently, and exists only tentatively even now. The point is that this is a dimensional, emotional and physical process, one fraught with challenges and joys, two steps forward, one step back, taking on many forms and expressions along the way.  For some this is a battle, for others a journey, but for everyone it is at it's core, a personal process and as such, unworthy of one, narrow cultural prescription. Again the article articulates this idea nicely, "'Metaphors don't just describe reality, they create reality", said Dr. Gary Reisfield. "You think you have to fight this war, and people expect you to fight." But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions. To describe a patient's process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, u-turns, it's changing destinations; its absence of win, lose or fail."

I couldn't agree more.