aiming for grace

a gift.

 

I was in a car accident last week. A guy ran a red light, a full on red at 40 miles an hour and sheered off the front of my new, pretty car. Thankfully I'm fine, a little stiff and sore and tired but other than that, I walked away unharmed. The car on the other hand, is out of commission for many weeks, but that's OK given how much worse it could have been. I'm one lucky woman.

The accident happened on the first day of my end of summer, two week vacation. Last week was about recovery and rest. So you'd think I'd be all ready for fun this week, now that I'm better and all. Yesterday I woke up sad though. I didn't know why for sure. As the morning progressed I got sadder still and finally devolved into a good sob fest. I mean a full on, let it all out, cry. I can't remember the last time I did that. I have to admit I felt a lot better afterward.

I wonder why this happened now. Is it a residual effect from the car accident, the letting out of pent up emotion, days later when it's safe and once I've finally relaxed? Is it because I realize more deeply how very lucky I was, walking away from a car wreck that seconds later could have had a very different outcome? Or is it something more?

I've been struggling a lot lately with the challenge of living the fullest life I possibly can while at the same time managing my diabetes as best I can to be as healthy as long as possible. The idea of this balancing point, the tension between the trade-offs I mentioned in my last post, has been more actively gnawing at me lately. It's probably the big birthday that's staring me down, that mid-life assessment process that everyone goes through at this stage of their life regardless of having diabetes or not. 

Whatever the motivation though, what I'm seeing in the process, is that I have less and less desire to reach out for adventure, travel or even meals out, due in great part to the toll it takes on my diabetes management. My life feels like it's getting smaller because I literally don't have the energy to wrestle with what stepping out of my routine brings to me physically. I'm just tired of all the work and unknowns and hassles so I opt to stay home more. I fear a smaller life but I also deeply fear complications from diabetes.

It seems to me that probably what's going on is that the accident and the amazing gift of walking away unharmed, has punctuated my desire to live the fullest AND healthiest life as I possibly can. In a very real (and quite violent way) the accident has reminded me how fleeting it can all be. In the blink of an eye someone blows through a red light and bam. This experience has galvanized my desire to find the right balance for me. Sooner vs. later.

Which means what am I willing to trade off? What A1c level am I most comfortable with in the end, regardless of what anyone else thinks? What things don't I care to do anymore and am willing to stop worrying about? What things do I still want to do and as such, become a priority to build my diabetes around? All good questions, all being asked with a little more urgency than before.

And what a gift that is!

(image is from a series of collages I've been doing after work, just for fun)

trade-offs.

 

Trade-offs. 

I think they're the essence of my life with diabetes. I navigate this disease by constantly weighing the trade-off of one choice over another. Very tight control may stave off complications in the future, while in the immediate, it may also limit the quality of my life from day to day. Not paying close attention to diabetes in the beginning may make a person feel unhindered by it, but complications, and all the limitations and danger they bring with them, are almost a guarantee with that approach. Obviously these are the most black and white of comparisons, but you get the idea. What exactly is the right balance, the right trade-off, I ask a hundred times a day? With the big trade-offs, and the little ones too. 

Like should I really have that handful of crispy, hot, freshly made tortilla chips? Is the delight of them now worth the probable higher blood sugar a few hours later? 

Is the desire for a longer walk with my dogs on a warm summer evening worth the risk of a possible low after bed because it's out of my usual routine? 

Should I forgo the idea of vacation because the reality of it is usually so much more work and physical struggle than just staying home?

Sometimes the answer is yes, other times it's no. Neither answer is right or wrong, each makes sense when I make the decision. The point is that life with diabetes is a series of unending trade-offs, a constant negotiation inside my head. Yes, life is like that, with or without diabetes. I get that. But what I also know is that people without diabetes don't have to consider every single thing they do to this degree. All this trade-off thought takes time and energy. It takes my attention away from just living and at the end of the day, it adds a level of poignancy and responsibility to the most mundane of things in my life. And like trade-off itself, that is both good and bad. Good because I'm reminded of the fragility (and consequently, the preciousness) of my life in everything I do, and bad because I'm reminded of the fragility (and consequently, the vulnerability) of my life with diabetes. 

Like I said, life is full of trade-offs.

normal and yet still not.

 

I often find myself contemplating words like normal when it comes to chronic illness. Even after having diabetes for so long, I am still surprised by how not normal it can feel. I'm coming up on that milestone of having it as long as not having it in my life which feels weird and a bit sad to me. You'd think after all this time it would feel more real and less other. Of course on many levels it feels totally normal, and I can honestly not imagine my life any other way anymore. But still, deep down inside there are moments when I catch my breath at the realization that indeed, this is normal for me. Amazing that it is, and more amazing still that it continues to surprise in the midst of it's persistent presence. 

Post-it art piece above by marc johns.

"when the body decides to stop following the rules."

When the body decides to stop following the rules is a wonderful article by loren berlin from the new york times. Though not specifically about diabetes, this beautifully written story of the author's own struggle with ulcerative colitis touches on some universal themes around chronic illness. "Before my illness...if I followed certain rules, I would get the desired outcome." Ah yes, I vaguely remember what that feels like. "...Generally, if I made the investment, I got the return." Yep, a familiar concept too. One of the hardest parts about diabetes for me is that all the hard work, all the attention to detail never adds up to a cure, an accomplished ending. At best, it staves off disaster in the future which, don't get me wrong, is a good thing, a very worthy thing indeed. But still in the immediate moment, the everyday experience of chronic illness, the actions I take sometimes work and sometimes they don't. With chronic illness, the "body decides to stop following the rules". Action does not always deliver the desired results.

"...Incurable illness doesn't operate that way. Dealing with it is not about studying harder or developing a regimented routine. Nor is it about karma, becoming a better person or learning to like leafy greens...It's hard. Not only am I adjusting to a chronic illness, but I'm also accepting that I am vulnerable to countless things beyond my control, that great haze that is the unknown."

I so appreciate hearing such profound clarity from someone else, so succinctly put, with such wisdom and grace. I also appreciate the overarching hopefulness of this essay, that in spite of all the struggle and unknowns ahead, this author chooses hope to focus on. "Dealt a bad hand at age 29, I decided my only option was hope." It's good to be reminded of this choice. It's good to learn from others journey's. I am grateful for their insights and the generosity of their sharing. I feel better because of it.

finding my own story.

 

I think I've been searching for a philosophy about my life with diabetes for a very long time. Something that can help me make sense of this strange experience with chronic illness. For me, a picture of the reality of a situation always helps me as the beginning of any growth process or change. Once I have an understanding of the truth, the way things really are, I can usually develop a philosophy to cope with it. I've done this process a number of times in my life when faced with some very difficult things. It's how I've been able to have as rich of a life as I've had, in spite of some very hard stuff that's happened along the way.

The process makes sense but the actual doing of it isn't as easy as it sounds. I've spent a very long time working on this, first by getting a handle on the physical aspects of diabetes and then attempting to draw the picture of the reality of the disease in my own life. Only recently have I come to understand that diabetes isn't an easy thing to pin down in terms of truth or certainty. There are so many stories we are told about what diabetes is, by others and by ourselves. Stories and information and warnings from the medical community and society at large. Stories from our families and partners and friends that factor into the picture. And then of course, there are the stories we tell ourselves, about diabetes, our lives and the experiences and expectations we carry with us because of it. "You're sick, so be careful." "You're lucky, so be grateful." "If you just do what you're supposed to do, you can lead a normal life." "You are damaged goods and no one will want you." "Diabetes shouldn't hold you back." "Diabetes will eventually cause terrible complications." "Diabetes isn't that big of a deal." And the list goes on and on. Some stories are negative, some are positive, some inspire and some set us up for disappointment. At the very least, all these stories serve to confuse because whether they are offered with good intention or in ignorance, they're most certainly at odds with each other. In my experience, each has a bit of truth about it but in the end, it's up to us to tease out which truths fit for us. It's up to us to figure out what our own diabetes reality looks like.

And that takes time and some quietness and maybe even some solitude to do so. And yes, it's yet another aspect of dealing with diabetes. But I think it's a worthy use of my time. I think the payoff is totally worth the effort. 

So that's where I am right now. Unteasing the stories I've been told and am telling myself to see which ones really fit for me. It's surprising because I'm beginning to reject some of the ones I've held dear since I got diabetes, ones that others hold dear too. We'll see where this process takes me. I'm hopeful that by doing this, my experience with diabetes and chronic illness will be that much more authentic and meaningful.  In the end, I will discover (and maybe also partially create) my true story with diabetes and in the process of doing so, find the philosophy around it that I've been seeking for so long.