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?
I've been thinking about hope lately.
For obvious reasons, given the recent election of Barack Obama as our next President, as well as other reasons related to diabetes too. But I'll get to those in a moment. I have to say first, that when Mr. Obama's campaign began, I was quite surprised by his choice of the word hope for the focus of his messaging. Don't get me wrong, I loved it, but I admit that I was also worried that it'd be perceived as soft or naive in such tough and cynical times. Hope. Really?
And then something happened. The word and idea caught people's attention and spoke to their hearts. It's almost as if people said, why not hope? Audacious, yes. Or maybe just amazingly insightful. People have always wanted and needed hope. And for so many reasons, this particular call for it, at this particular time, inspired so many of us to believe that a true change was possible. Hope was exactly the point. And ultimately, hope (and a ton of hard work and effort) lead to a profound, new reality.
My best friend called me the other night, all excited about a news segment she'd just seen on msnbc about some exciting research for type1 diabetes. The piece used words like "promising breakthrough" and "possible cure", interspersed of course with lot's of disclaimers and caveats. I tried to share in her excitement but found myself tempering my enthusiasm in spite of myself. Given the reality of how many times I've seen and heard this kind of thing before, I've learned to keep any real hope about at cure at arms length. Though I found myself saying yes, yes, it does sound promising, inside I was thinking, "Well maybe. I'll believe it when I see it."
The truth of the matter is that I've pretty much given up hoping for a cure for diabetes. It doesn't really help me with the day to day of dealing with the disease. Diabetes is here and boy is it real. Hoping for a future without it has always felt somewhat futile and disappointing. It's been a nice thought that's never come to be.
And then I got to thinking about this election. In this case, hope turned led to the reality of change. Though I know that politics are one thing and science another, hope, and the unrelenting belief in progress that it embodies is the same. Hope endures. Hope inspires. And at the end of the day hope can be the fuel for profound change.
So with that in mind, I watched the clip my friend had mentioned another time. And though I'm still not getting my hopes up too high, I find myself feeling a little more hopeful. Even though it might not be this particular research that gets us to a cure, maybe it will be the next one. Maybe it will be one that comes from research now that we have a new President who actually believes in the promise of stem cell research as a possible cure to diabetes and will likely use his executive powers to reverse the former administrations ban soon after he takes office. In 2007 Mr. Obama said, "I am frustrated...that we are preventing the advancement of important science that could potentially impact millions of suffering Americans...My hope, and the hope of so many in this country, is to provide our researchers with the means to explore the uses of embryonic stem cells so that we can begin to turn the tide on the devastating diseases affecting our nation and our world."
Hope. There it is again, the word and idea. There it is again.
Sometimes I get pretty heady about trying to deal with diabetes. Some days it so totally sucks to have it that I can hardly contain myself. Other times, I barely notice my diabetes. No highs or lows to speak of. Just humming along. Today is one of those days. So much so that I hardly noticed that I was hardly noticing it. For what it's worth, I think this is a very, very good thing. Really it's the goal, in the end. Not noticing because there's nothing much to notice making it easier to notice everything else.
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.
What's in a number? With diabetes, so much and in so many ways, nothing at all. At times I feel like I'm drowning in numbers, blood sugar readings, insulin dosages, carb ratios, A1c's. I'm swimming in numbers to the point that on some levels I'm numb to them. I'm really commited to my diabetes care but at the same time so buffeted by the sheer volume of numbers I have to navigate to take care of myself, that they can start to loose meaning to me. More accurately actually, they start to loose their impact. I notice them and I react, but it's pretty rare that they actually stop me in my tracks anymore. And on the whole, that's probably the healthiest way to be. I can't imagine reacting strongly to every low or high, every numerical detail I have to deal with in living with diabetes.
Which isn't to say that once in a while a number doesn't catch me off guard or send me for a loop now and again. Yesterday was one of those times. I went to my quarterly check up with my doctor, downloaded my meter, weighed myself on the scale and pricked my finger for my latest A1c. Then on to the examination room to discuss with him how the last few months had been. "Good", I say, all upbeat and positive. "I feel better about my diabetes than I've felt in ages". I mean better emotionally of course, happier and more at peace with all that diabetes brings to my life. He says he's glad about that, starts to check my feet, update some records on the computer while we talk. And then he let's me know my A1c number. It's higher than usual. Still good, but much higher than I like it to be. My poor doctor was almost reticent to tell me the A1c results because he knows how seriously I take my diabetes control and he more importantly, knows I'll be bummed by the jump in the number. He also knows, probably better than anyone, that this number is only a moment in time. I know it too. I know it in my head at least, but for some reason, this time, I also seem to take in stride emotionally. I was unruffled and composed. We're both a little surprised by my reaction actually. We discuss why my A1c might be the number it is, adjust my basal rates at 2AM and 5AM and out I go.
I make it all the way to my car, pull the keys out of my purse and am about ready to turn on the igniton when, bam, I start to cry suddenly and hard. The tears, the exasperation, the disappointment, the guilt, the frustration, all come streaming out at once. In my head I know it's just a number, just a moment in time. This A1c is one of thousands of numbers before it and one of thousands to come. But it's not my head at work here now. It's my heart. It's the deep grief and fatigue I carry around because of never, ever, ever being done with this dance with diabetes. Less about the actual number, the hot tears that came so suddenly were about working so hard to do it right and yet again, knowing that I hadn't.
Today is better. Today I woke up with a far better blood sugar, thanks to the adjustments we made on my night time doses. Isn't it funny, but today I feel better because of a number. A fleeting, moment in time number. It makes me smile at how silly that is and yet I understand it too. I'm working at letting these individual numbers mean less to my overall mood. I'm working at it and probably getting better at it too. I guess I'll never quite find the perfect balance between caring enough, and not so much that it ruins (or makes, for that matter) my day. But I'll keep trying.
(The video above is by one of my favorite artists feist who's song, 1-2-3-4 is a playful, fun celebration of numbers. Apropos of nothing, but somehow perfect for this post. Enjoy!)
I'm heading back from the art center design conference at the moment, sitting in the airport, bone tired. It was a pretty good conference in a number of ways, interesting speakers, a wide range of topics discussed and the opportunity to see people I've come to know over the years but only see at this sort of event. As with any of experience like this, there were some very special presentations and insights I'm taking away and will ponder for days to come. Tops on that list for me was an unexpected exchange between the moderater john hockenberry and one of the last speakers of the event, aimee mullins.
john hockenberry is truly the best moderator I've seen at the many conferences I've attended in my career, bar none. He's brilliant at providing insightful analysis and personal thoughts throughout the event which serves to connect one speaker to the next and keeps the flow and energy of the event high throughout. He's also funny, charming and entertaining in his own right. And, he also happens to be a person who lives with a wheelchair because of a spinal cord injury, which on one level has absolutely no baring on anything, and yet on another more personal one, remains utterly significant for me. I remember the first time I attended this conference and watched this man command the stage with such intelligence, skill and humanity. I remember being moved and surprised in spite of myself. As a person who has struggled with the invisibility of my own health issues, it was truly a revelation to see another person whose physical differences couldn't be hidden, present to the world so wholly and comfortably in his own skin. I remember thinking that I was being offered an opportunity to learn something about my own journey with physicality through his.
Well 4 years later, this is still the case. This year the conference invited an amazing woman to present, the world class athlete, actress and model, aimee mullins, who also happens to be a double amputee. Very accomplished and stunningly beautiful, this woman who'd I'd seen from afar in many magazines and art pieces, was a real force of nature in person. Self confident, strong and positive without being pollyanna or denying of what her physical experience meant, I found myself rivetted by her talk. Again, like 4 years before, I felt as if I was being offered a rare opportunity to learn about my own physical challenges through another person's experience and view. And that felt powerful and precious, like a gift being presented to me by the universe.
But, I'm getting a bit ahead of myself. Before ms. mullins spoke, mr. hockenberry introduced her as he had done with all the other speakers. But this time, unlike the others, he began with a personal story about his own experience in rehab soon after his accident. As he told the story of having an intellectual realization about his body's new, strange reference point and consequent adjustment to moving through the world in a wheelchair instead of a walking person, and of trying to engage the attending physician in conversation about this idea, only to be tacitly dismissed by the doctor. I noticed a pitch in his voice that I hadn't heard before. It probably wasn't obvious to most of the people in audience I imagine, but I heard it immediately. It was that deep, quiet, shock of realizing you'd become something different than you were before, that you were becoming someone objectified and abstracted. In his voice I heard that horrible feeling of being made invisible, of having one's new life experience ignored and dismissed. mr. hockenberry was describing his new physical experience to a person who now only saw him as paraplegic (other) and not as an intellectually curious person too. I may be projecting or all wrong here, but that's what I thought I heard, quietly, underlying his story and voice. He went on to desribe this moment as the beginning of a profound isolation of experience, that in the absense of interest or curiosity on the part of the doctor he was trying to talk to, he entered what he thought was a very singular and particular journey alone.
And I immediately knew what he was talking about. Though in different circumstances and with a very different physical condition, I knew that feeling. I knew that loneliness and feeling of invisibility and dismissal too.
mr. hockenberry then went on to describe how he had met ms. mullins 30 years later and how their proceeding conversation about their personal experience with physical disability was a revelation to him. He described how he quickly realized that here was a person who understood what he was talking about to the disinterested doctor so many years before. Here was a person who was not only fascinated by the ideas of different physical vantage points and the dynamics of navigation, but one who had also developed language and philosophy around it. She fundamentally understood his intellectual curiosity around his physicality and also seemed to embody the fact that the intellectual and philosophical exploration of the experience was key to living life fully and whole. What followed was a remarkable hour of two interesting and accomplished people discussing their physicality, their exploration of it and their development of a philosophy and sense of opportunity around it. I sat in the audience and watched in amazement as these people talked about ideas I'd grappled with for so many years. It was so strange and wonderful to watch two other people consider, explore and even disagree about physicality, disability and the idea of differentness because of it, in public and with such vigor. It displayed a new normalcy, some of my normalcy as a person with a chronic illness, for all the world to see, publicly and without pity or shame. I felt so validated in my own intellectual instinct and curiosity around my own disease process and journey because of this. And beyond that validation, I was lucky enough to witness a real and robust exploration of ideas and viewpoints that I have rarely seen or participated in. Suddenly I realized how unique and unprecedented this was, that this public conversation had moved far beyond the usual idea of loss and struggle, the outside in view of disease and disability that normally defines the conversation, the one where grief and invisibility and struggle are the focus. Instead I was watching two smart, whole people having a knowledgeable and probing discussion from the vantage of inside out. They were demonstrating a new type of normal I'd never really experienced before. Not a less than normalcy but actually a more than view of normal, brought to bear because of this journey with the physical. Asset, not just disability. Opportunity, not just loss. And at the end of the day, what ultimately I take away from this event is that this journey of chronic illness is a profoundly human one, deep, exciting, personal, tragic and full of possibility all at the same time. The more that it's talked about, privately, publicly, intellectually, artistically, personally, the more that becomes clear. To me. To the world. The more it's talked about and explored the clearer the humanity of this journey becomes.
And that's a very, very good thing don't you think?
The other day I noticed something about what I notice. I always notice when I haven't done something right in terms of my diabetes. I notice when I don't correct a high accurately or I've over eaten to counter a low. I notice when I over bolus to cover for a treat or on the other hand, don't bolus enough to cover it. I always notice when I get it wrong.
Last weekend I had a bad low after a day full of gardening. One of those lows that feels like I'm never going to recover, sweaty, panicky, desperate. It's usually during a scary low like this that I overate in the immediate effort to get my blood sugar back to normal. Which was the case this time and I knew I'd pay later in the night with a rebound. At bed I was an acceptable 145 but as predicted was up later in the night with a 300+ blood sugar. At night I become very insulin sensitive and consequently need to take less insulin to cover a high than I do during the day. Which can be challenging to remember when I'm groggy and tired in the middle of the night. But this time I did remember and took the right amount for the night and promptly went back to bed. In the morning, my blood sugar was a happy 98 and I set about my day as I normally would. Walked the dogs, took a shower and got ready for work. And then a funny thing happened. I just stopped in my tracks. I realized something I hadn't noticed before. I had got it right the night before, pure and simple. Not wrong but right, as I had done so many times before. What was different this time was I noticed. I actually noticed that I had got it right.
What occurs to me is what a different feeling I'd have about having diabetes if I noticed all the little successes a bit more. Imagine if I noticed more of the times I got it right and celebrated those moments just as enthusiastically as I berate myself when I get it wrong. The sheer number of little successes it takes to keep my blood sugar in control easily outweighs the occasional mistakes. When I look at the picture this way it occurs to me that the noise and pain I've let surround my mistakes may really be out of proportion. If I let the weight of every 90 blood sugar or perfectly counted carb ratio or correctly figured correction bolus have more value in the overall equation of my diabetes control, the times when I don't get it right become so much more the exception than the rule. A small glitch, not a failure. A slip against a backdrop of getting so much right with a difficult disease.
And maybe at the end of the day, seeing it that way would really be getting it right overall!
I found this video of jill bolte taylor absolutely amazing and inspiring. It's a pitch perfect example of a person describing a physical trauma (in this case a stroke) from the inside out. Dr. Taylor also happens to be a neuroanatomist, so she's in a unique position to share her experience with an added level of technical insight and context. But it's her unbelievably humane and moving presentation of the story itself that really brought me to tears. I was spellbound and yet surprisingly comforted too.
One small warning for the squeamish. There's a short portion of the presentation where she handles an actual brain. It's a little creepy but it doesn't last for long.
Artwork by fred tomaselli.