Recognize Victories. Consider Lightness. Celebrate Courage. Embrace Kindness. Aim for Grace.
For quite a long time I've been thinking about how I'd like to have a way to acknowledge all the small milestones of living with this disease. Little markers, badges if you will, that are earned every day, every hour, every minute, by countless people living with chronic illness. Merit badges to acknowledge all the grace in light of struggle, the courage in light of unending challenge, the everyday victories people with chronic illness have every day. The older I get the more I'm convinced of the importance of celebrating and marking them in some small way. Because of my love for all things girl scout, what came to mind was a token, a kind of merit badge for all the small milestones we achieve. I thought about how great it would be to give a physical acknowledgment to someone when they needed a little boost or vote of confidence. A nudge to say yes, I see what you face and I think you've earned some recognition, you are a hero in my eyes. And then I thought about how nice it would be to receive something like this from someone else. Moments marked by love and of bearing witness, of being seen. Moments where the tiny milestones are acknowledged.
I saw my doctor this week and it was an unsatisfying visit to say the least. More struggles with my A1c, quite a shock to me given the low day to day blood sugar readings I've been getting overall. Nothing terrible, just not what I'd expected or would prefer. It's a few days later and I'm over the shock now. I've certainly been here before and I know that the best you can do is do your best, which I'm doing as I basically always have. I know too that my A1c will improve, and if I'm really honest with myself, I also know that it will be up again at some point too. It's the disease you see. It's what happens. I know this in my head (though I admit I still struggle with it in my heart).
I understand that I'm hard on myself and have high expectations. I understand that I need to find the right balance between good control and letting diabetes taking over my life. My doctor said as much. "What do I need to do given this A1c? Should I go on the sensor? Take more blood sugars?" My doctor, who means well, who understands me after all these years, who understands the balancing act we face as diabetics, basically replied, "do nothing". Just keep doing what you're doing and live your life. "Live your life". Literally, that's what he said.
I understand what he's saying and I strive for that. A good life regardless of diabetes. Or maybe because of it. I consider this a lot. And I try to let things go. But days later after the visit, I find I'm still struggling with the contradictions of my meeting with my doctor. A1c up, but don't do anything differently. Live your life, but keep you diabetes in control. I know that I can do this, that in fact it's what I do already. It's what I've done since I was diagnosed. I know this fact, but I still feel uneasy about it. I get that you just have to let go of the worry to live well. But I'm always wondering what and how much I should let go. Is it a slippery slope? If I give up caring about an A1c I'm not happy about to "live my life" will I give up caring about carb counting or a 280 blood sugar over time? Given the years that I've been doing this very delicate dance between caring and not, I'm not sure what the perfect place between them is. I'm frightened by the physical and emotional cost of not knowing that place for sure.
So where I've landed is I'll keep focusing on blood sugars, carb counting and correcting. Of course I will. It's who I am. I'm also thinking about going on the sensor again, maybe after the next A1c, depending on the result. I'm also going to continue try to accept that this is what diabetes is. Not a grade, just a disease that flows and changes. I live a life, a good life, with a disease that flows and changes. A life I love but also struggle with. One that is good in spite of AND because of diabetes.
I've always loved birds but have never been able to bring myself to own one. This morning I realized why.
Last week was frustrating for a number of reasons. The usual work stuff, people, politics, everyday things really. That coupled with an underlying anxiety about the state of the economy that everyone is feeling and well, it was just a tense week overall. My team also moved their offices to a new configuration last week, more open and thankfully, up against the windows so we now all have a beautiful view of trees and sky. I'm loving the new lay out though getting there exacted a particular, physical toll on me. Five insulin reactions on the move day. Five! It's not like I was moving boxes or anything. No I was just getting things organized, moving this pile here, my rolodex there. As my coworkers settled into their new digs, I did so while battling the dull headaches, sparkles in my eyes and vague disorientation of low blood sugars, one after another.
In the middle of that night I had a hefty rebound from all those lows. Nothing dramatic, just the usual kind of thing that happens after a day like that. The next day was ok, but I was tired. Again, nothing dramatic, and again, just the usual kind of thing that happens with diabetes. Up and down, lows and recovery. And so it goes. I used to get so sad about this and do so still at times, but far less now thanks to blogging and a new, deeper acceptance of my life as a diabetic. No, more than anything now, I can recognize what's happening, note it, and then get on with life. It's better this way. Much better.
A couple of nights ago though, I did came home very frustrated and upset. I laid down on my bed before dinner and cried. Just let it out. All the anxiety, the fatigue, the heightened emotions of the week. After a few moments I got up and washed my face and sat down to dinner with my husband. I walked him through my day, my week, my feelings. I ranted about the need for meaning in my life, my classic mid-life dilemma. "Is this as good as it gets", I asked. "I've been such a girl scout, a model diabetes patient, a great employee my whole life and this is as good as it gets?" Never mind that I was tired and frustrated, at that moment everything felt dark and confusing.
And then my husband said something that shed new light on the situation, as he's done so many times before. "You know, your life is a little like that of a caged animal, in great part because of diabetes." Huh? I was stopped in my tracks, captured by the images those words brought to mind. A beautiful bird in a cage, alive and singing, but not able to fly. An exotic animal in the zoo, pacing from one end of its enclosure to other, back and forth. With that one sentence the conversation stopped and I thought, yes! Yes, that's how it feels at this point in my life, mid-life, with all the normal stuff that comes with this stage. The time of reassessment, the search for meaning in my life and work, the poignancy of the idea that if all goes well I still probably have less time on earth ahead of me than I've had so far. Natural stuff for this time in my life all made more significant by 22 years with diabetes and all the little limits that add up to a less spontaneous life. Yes, I'm alive and lead a full, rich life. It's a very good life. But yes, too, it's been a bit like a life in captivity, a life with sharp edges and physical limits and a set of rules the wild animals don't have to contend with. Food comes on a schedule, exercise is prescribed and if you're lucky, you get all the medicine that's needed to stay well. You can live long and with health, but its always within the limits of diabetes.
As I said at the beginning of this post, I've always loved birds but have never been able to bring myself to own one of them myself. For me, keeping a bird in a cage has always felt wrong. I don't fault others for doing so and I understand that lot's of birds have been raised in captivity and don't know anything otherwise. But I've never been able to quite make the leap that all the wildness of birds is gone and that they don't really yearn to fly regardless of how they've been raised. So though I adore birds and would love to have them in my house, I just can't bring myself to do so. What I realized this morning is that maybe it's because somewhere deep down inside I know how a bird might feel in a cage. Who knows if I'm right about that but for me that's where it comes to. I can empathize. I think I know how it might feel. And given that knowledge, that feeling, in my life where I can, there will be no birds in a cage.
Photograph by one of my favorite artists, luke stephenson.
It's the New Year and a time for reflection and promise. I've been trying to think about my diabetes differently lately. Less of a place of sorrow and regret and more of a source of creativity and possibility. More of a reason to have the best life I can. It occurred to me a few months ago to try an experiment. I asked myself, "what would it look like if I flipped the premise I've been living with to see what diabetes is giving to me as compared to what it takes from me?"
Wow, now that's a question! Now let me just clarify for a minute. I'm not going all pollyanna on you here. I'm not saying it doesn't take, but rather that it is undeniably here in my life so the question becomes, how can I use that fact to make my life better?
So much of growth comes from the little things adding up to new behaviors or outcome. Last night just a moment occurred for me. Nothing huge in it's own right but on balance, a pretty big shift in the scheme of things.
Enough said? There it is. I wonder, have I said about everything there is to say about my experience with diabetes? Is there anything left to be said about the subject, at least by me?
There are days when I feel just battered by diabetes. Both physically and emotionally. These last couple of weeks have been tough, dealing with routine changes from holidays, "celebratory" meals outside my usual diet, challenging medical procedures as well as the standard ups and downs of life with diabetes. I've had a couple of highs and lows that were off the chart, particularly hard on my body as well as my spirit. This morning as I lay in bed before I started my day, I realized how emotionally worn out I am by all this physical challenge. I'm tired to my heart of having to constantly deal with this disease. I know that this feeling will pass as my day takes on momentum and I get on with my regular life, but for now, at this very moment, I need to acknowledge how I'm feeling. A little shaky and a bit emotionally bruised from all the "dealing".