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?
In the spirit of full disclosure I have to admit that I come from worrying stock, so I come by the behavior honestly. My grandmother was a worrier, my mother is a worrier, and yes, I'm one too. It's in our dna, if that's possible. Or at least it's part of our family culture, just like being political or not might be. Or using cilantro in your food. Or driving a certain brand of car. Some families do it one way, others another. In mine, worrying is just something we do.
So given the fact that I have a natural tendency to worry, it doesn't surprise me that I do so when it comes to diabetes. Living a long time with any chronic illness, and with diabetes in particular, what with all the details and vagaries you have to manage, presents lots of opportunity for worry. In the immediate: did I take enough insulin? Will that walk make me go low? Was their hidden fat in that meal that will send my blood sugars sky high in the next couple of hours? Yep, there's lots to get a worrier worrying here. And then of course there's the long term stuff to worry about. Complications. Physical things related to diabetes that you didn't know about until you start having it happen, like frozen shoulder or thyroid disease or whatever. Who knew until the doctor says "oh yes, diabetics have a higher chance of getting x". Yes indeed, chronic illness has so much that serves as fodder for worry.
Because I tend worry anyway, and because I have a disease that presents lot's of stuff to worry about, I am realizing how much I'm living in a low grade state of worry everyday. Worse yet, I'm beginning to realize that this worry state spills over into the rest of my life and quite frankly, is making me become something I'm not thrilled about. Every pain, every stiffness, every natural aging thing like needing glasses or having a mammogram every year or aching more after activity, everything makes me worry a little. Is it something serious? Is it something I need to see the doctor for? Is it yet another cause for worry? And then I say no, it's fine, don't worry. But inevitably I think "but what if I'm ignoring something I should be paying attention to". God knows one thing diabetes has taught me to do is pay attention to the slightest changes and details. How do I only turn that on for diabetes and keep it off for everything else? How do I know what is really worthy of worry? And more importantly, how do get some time off from worry when I never get time off from diabetes? How do I strike the right balance between appropriate vigilance and too much worry?
All good questions and not surprisingly now I'm worried I won't ever figure it out. Ok so that's a joke (but not totally)!
I've been feeling pretty good lately. My diabetes has been under good control and I've been feeling alright about it all. Feeling like all is well even if I have diabetes. And then last week I had one of those weeks. A spate of high blood sugars without a clear reason why. Was it that meal out with friends that kicked it off? Was it the angle of my site and the fact that the waistband of my jeans kept jiggling it out of the locked position? Was I getting a cold (after all I'd woken up with a sore throat one night)? Was it stress from work, stress from a few high blood sugars? Was it some bad choices I had made? Or just bad luck? After a few days and a few nights up dealing with the roller coaster, I was tired and weary.
What's amazing to me about this, is even though I'd been cooking along well for a such long time, it only took a couple of days into a bad spell and there it was. The weariness. The deep, deep, weariness that I forget about on the good days. There is was like a snap of the fingers. Right under the surface, never too far away.
For some reason, that deep weariness always surprises me.
I've since changed out my site and my blood sugars have normalized and I'm back to feeling fine. I guess it was the angle and positioning of my site. Or maybe I'd hit some scar tissue. Or maybe a I overcame a cold that never came to fruition. Whatever the reason, things are better now and the weariness has faded. And I forget about it again, for now.
Today is the 22nd anniversary of my diagnosis with diabetes. I am proud of how I've handled it but also so sad to that it ever had to happen in the first place.
This vintage British World War II poster from sfgirlbybay, which I have framed in my office at work, sums up my overall attitude about diabetes these days. Maybe it's because my mom is British so it's sentiment resonates deeply in my dna, or maybe it's just because it feels like it's the only choice I have, but there you have it. 22 years. Keep calm. Carry on.
A couple of years ago I fell down some stairs at work. I caught my toe on the edge of the stairs and fell out over them and landed on my wrist and shoulders as I tried to break the fall. Luckily I didn't break anything though I was very bruised and shaken up afterward. To this day, every time I go down those stairs I feel a little bit nervous. I literally have a physical reaction to something that happened to my body a couple of years before. It's like my body has a memory of it's own.
If that is in fact the case, that the body has a memory, I wonder if it can make the distinction between pain from accident or trauma or illness, and the ongoing moments of pain that it has to endure to stay healthy with diabetes. Does my body "know" that the endless blood tests and pump site insertions and removals are for it's long term good? My mind knows and it helps me override the apprehension I feel that second before the plunger clicks and the fresh quick set is inserted into me. But still I find myself waiting to the very last possible moment to change out my sites, resisting the insistent beeping of my pump reminding me that soon I'll be out of insulin. I know that this is in great part because I simply want to avoid the pain, however minor, the procedure inevitably involves. Which doesn't make sense on it's face. It doesn't make sense to my mind, that's for sure. Snip, snap, take out the old site, rip it out quickly and the immediate pain is gone soon thereafter. It itches a bit, sometimes it bleeds, but it's over in a few minutes. Same thing with putting the new quick set in, one, two, three and click it's in, burning a bit, sometimes stinging if the insulin is too cold but over in a flash also. What's the big deal? It's not so terrible yet I hate it just the same. I can't help but wonder if some of this is my body memory weighing in where it can. My mind may understand, but my body just reacts to the pain and tries, however futile that might be in this case, to avoid it in the future.
The other morning, just before I was fully awake, I noticed that the spot on my hip where I often put my sites was itchy. Even though I wasn't fully conscious, I found myself going through a little mental inventory before I let myself scratch the itch. Is that where my site is? When did I last change it out? Don't scratch it until you're totally sure. After the couple of seconds it took to scroll through those questions, I remembered that indeed, I had changed my site out the night before and the place that was itching was the old site. Check, I could scratch the itch without fear of disturbing the site or worry that an infection was starting there. Check, I could scratch the itch and roll over for a little more snooze time.
It struck me later when I was actually awake, that diabetes is so much about these little details for me. For some reason I notice the textural, granular things about the physical experience of diabetes, often more than the big stuff. These nuances, the strange bits and pieces that make up daily life with all the paraphenalia I need to use to survive, are what catch my attention at the strangest, most unexpected moments. Skin meeting sticky adhesive tape, callouses meeting dull metal, sparkles in my vision when I'm low, numbness in my tongue when I'm really low. After so many years, these physical sensations exist in a strange place within my consciousness, certainly within my awareness, but also less distinct because they're so persistant in their daily presence. They demand my attention and yet their demands are so commonplace that the volume is also subdued. These small details have become so quiet and yet somehow, so much more noticable too.
I owe Amy a big thank you for her kind review of my new little book aiming for grace: 20 things I know about diabetes. To be honest, I'm feeling a bit funny about even talking about it. More than anything, making this series of posts into a self published book has been a terrific exercise, a healing process, to be honest. The fact that there's a book that people can have if they'd like, is a very nice result of a personal exercise that's been helpful and positive to me as an individual. Making something from nothing has always really helped me for some reason. A piece of art, a story, a blog post, a book. Taking an idea or feeling from inside and pushing it outward into a real form that I can see and feel has always made sense to me. It's always made hard things less difficult to deal with.
That was the core idea behind the aiming for grace exercise I did a couple of years ago to commemorate my 20th anniversary of living with diabetes. It was so very helpful, 20 posts over a 2 week period. Surprises and revelations that I hadn't expected, confirmation and celebration of what I'd learned so far. It helped so much to see the ideas rather than just think them. Doing the exercise did exactly what I had hoped it would by creating a milestone and documentation of all that I knew so far. It honored my journey for myself.
After doing the exercise on my blog, I decided to make 10 one-off copies and have them bound in a book format to give to my family and friends and doctors, to acknowledge their help in my journey and to thank them for their support. There was something so amazing about take the idea further, from inside my head, onto the blog with it's virtual format I could see, to a book format I could touch and feel. The process somehow made the ideas feel more real to me and just as importantly, it gave the people who received the book a chance to interact with the ideas in a more intimate and personal way. I don't know what it is about books, but there's something about the weight and feel of a story in your hands, physically revealed with each turn of the page, each picture and phrase. Everyone, to the person, commented on how they had learned something more about diabetes because of the book, a result quite frankly I hadn't expected. These were people who knew the disease well or at the very least, knew me well, and yet because of the format, were able to interact and understand diabetes at a different level. Who knew?
Since I went through the exercise of making the one off books, some amazing technology has come to be. In the last couple of years the ability to self publish has become possible in unprecedented and relatively affordable ways. Thanks to services like Blurb, iPhoto book, and Lulu to name a few, it's fairly easy now to publish one's own content in a beautiful, professional way. Each company has a interface that makes it possible to drop your content into their format and then for a price, based on size, number of pages, and whether it's hard or soft cover, they will produce the book for you. Simple as that.
So what's happened is that the insight from my experience with making the aiming for grace exercise into a book has combined with this happy new technology of self publishing and voila, my little book was born. I kept thinking about how people internalized the ideas differently in a book format and I thought that other people might like to have the choice to see the story that way too. All the original content still lives on the site and can be read anytime here. What's fun is that now if someone wants to have it in a swell book format, they can have it that way too.
So much of being understood and heard is determined by how an idea is presented. "Know your audience" is one of the first rules of good presentation. With that idea in mind, I drew this silly chart as a way I might communicate to my doctor or nurse about how I was feeling about my diabetes. There are so many factors that go into the answer to that question that it's hard to explain succinctly and with clarity at a short doctors appointment or phone call. When I see my doctor we have only so much time to talk. We review my latest A1C, discuss lows and highs, check my feet, you know, the usual stuff. If we have any time left after going over all my numbers, my doctor will sometimes ask how I'm feeling about my diabetes overall. But because it's at the end of our visit, there's never much time to go into any depth to really answer his question. I usually say something like "I'm ok" or "this is frustrating but I can handle it", and then we're done and out I go back into the world.
But I know from personal experience how much mood, attitude and feelings play in my approach to my diabetes management. Feelings have real impact yet they're not quantifiable or precise or particular like a reading from a blood test or an A1C. So much of my approach around diabetes is about balancing, about landing somewhere on a scale between 2 places, 2 opposites, 2 variables. This drawing was a beginning attempt to capture how that might look in a picture rather than as a vague idea. If understanding has to do with presentation, would my audience, those amazing medical, clinical, data focused partners in my care, consider my feelings and attitude as a part of my overall control assessment differently if I shared it with them this way? Since my attitude and mood has such direct impact on my diabetes control, why shouldn't it be expressed in a language and format that makes sense to the medical world I have to interact with? And most importantly, would this added clarity around such a key factor in care mean that we would both have more information to act on? I think it'd be interesting to bring something like this to my next doctor's visit. I like the idea of interjecting feeling and attitude into the management equation to broaden the conversation beyond the usual clinical, numerical data points. At the end of the day, feedback, context, information, clarity and understanding can only help. And a little more help is always good.
My husband and I went out to dinner the other night. I got to the restuarant a little earlier than he did, so I took the opportunity to take a blood test before the meal. The waitress must have seen me do it because later on, after we'd finished our meal and were ordering dessert she said something to me about it. She said, "You're diabetic aren't you? You're going to go easy on that dessert right?" My husband has a sweet tooth and so we usually order one dessert for him and I'll take a couple of bites and that will be it. We'd done that very thing this time around, one tiramisu, two forks please. I was so surprised by the waitress' comment that it took me a couple of seconds to regain my composure. And when I did, I have to admit that I was pretty surprised by my own response. It wasn't a comment like "that's none of your business" or "excuse me but who asked you for your opinion?" No it was nothing like that. Instead I found myself explaining that I was on the pump and I could take a bolus to cover the sweetness, and that it was ok for me to have a bite or two. But I didn't stop there. No I just kept babbling on about how I get to have a few treats here and there. That I wasn't going to have a whole dessert, just a couple of small bites. Geez. I just barely stopped short of saying "no really miss waitress, stranger to me, I'm really a GOOD diabetic. Really!"
I haven't been able to shake this encounter. It's left a sour taste in my mouth that no two bites of tiramisu could ever wipe out. What's stuck with me is less about the presumption and frankly, rudeness of the waitress and much more about my own reaction to her comment. I'm a bit saddened by my need to explain and justify my actions to anyone, let alone a complete stranger. I'm surprised by how insecure and judged I felt. Where did that come from? I know in my heart that I'm dedicated and disciplined. I'm not overweight, I have good and consistent A1C's and I rarely overindulge in sweets. And yet, there it was, this overwhelming need to explain myself, out of the blue. I'm still shaking my head about it. I'm still surprised.
Image (ironically from googling tiramisu randomly) from ezeediabetes.