I've been thinking about what aimee mullins said about the opportunities her disabilities have presented her. On one level I recoil at the idea of seeing disability or chronic illness this way, fearing that the tired, "be positive", new age-y proselytising is just around the corner. But I don't honestly think she was just saying "look on the bright side" here either. Hm. Opportunity. At the end of the day, that hasn't been a concept I've every really considered in terms of my diabetes. Coping, trying to feel whole, aiming for grace, yes. Opportunity, not so much.
The other day, at a quiet moment, a very clear and simple question just popped into my head. If I were to consider the idea of opportunity in this experience of chronic illness and diabetes, what would that look like and mean? What is the opportunity, if any, does my diabetes offer me? The question just hung there in the air, quietly, lightly, without any judgement. It was a bit profound actually, to hold up this experience I've had, that I'm having at this very moment and turn it around to look at it from a completely different vantage point. What is the opportunity my diabetes offers me? I'd never asked myself that question. Never.
What happened next was surprising. Again, quietly, as if suspended in air, a tentative answer presented itself. If I look at my diabetes and all the hoopla and time I have to devote and details I have to focus on as my true reality, what comes up is this. Diabetes offers me the opportunity to gently, justifiably, kindly tend to my health. It offers me the chance to truly and deeply care for myself. It offers me a life path of nurturing and care, not unlike a gardener tending to their garden or a parent nurturing their beloved child. Diabetes offers me the chance to pay attention to my body, my health and ultimately, to life itself.
That's the answer that presented itself when I asked the question. There it was.
Now I'm not saying that this idea negates all the other things I feel about diabetes, the loss, the burden, the weariness. But it's interesting to add to the "hand of diabetes truths" the idea of embracing the opportunity it presents. I'm not sure I totally buy this yet but I'm certainly open to considering it. Up until now I've only seen diabetes as a thing that gets in the way of living a full life rather than a chance to profoundly celebrate living. At the very least, it's an interesting idea to hold in my heart for a while. And hey, if it brings me some peace and comfort in the process, it's certainly worth the consideration.
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 design matters, check out the wonderful 2nd annual diabetes mine design challenge. It's this kind of activism and vision that can bring about real change. I imagine somebody out there in the world, putting pen to paper as we speak, designing something that wouldn't have been designed before, something that will make our lives better, thanks to this challenge. One person, one challenge, one solution can bring about so much progress and positive change. Much thanks to amy for leading the charge!
Let the designing begin!
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 said it before and I'll say it again, design matters. Just because I have a chronic illness doesn't mean I don't have good taste. In that spirit, here are a few recent finds of products and prototypes that are shining examples of how medical stuff doesn't have to be clinical or ugly or boring. Say it loud sister!
This beautiful rfid medical alert bracelet prototype by doria fan makes my heart go pitter pat. I'd wear this beauty in a flash if given half the chance. Groovy, pretty and functional, what more could a girl ask for in a medical alert bracelet?
These beautiful alternatives to the usual over the counter drugs and bandages we use in our everyday lives come from the company help. Smart and simple design, elegant packaging and a wonderful philosophy behind the company, I know which bandage I'd pick if I had the choice. "While some health problems are large, complicated and frightening, most aren't the end of the world. A kind word and a little help can get you on your way again. Help Remedies was created to make solving simple health issues simple. We find the best solution there is, and take away everything else. By stripping away some of the complexity and fear mongering of the health industry, we hope to make the category friendlier and more accessible, and in doing so empower people to make their own health decisions. We think a little help, honesty and kindness will go a long way." Amen!
And finally, how cool is this simple, modern, sassy container by urchin for all the unending diabetes supplies I need to have hanging around? I love it's straightforwardness, it's overt utility. I love the fact that something like this makes no apologies for it's contents or job. Take that embarrassment! Bye bye shame. Hello groovy modernity. Hello groovy diabetes girl.