aiming for grace

inside out.

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?

healthy vs. normal.

For years people have said that even though I have diabetes I can live a "normal life". I've struggled with this idea for a long, long time but thanks to a bit of an epiphany a few years back I no longer feel that normal, in the most normal sense of the word, is really my goal. Though I know most people mean well when they say this kind of thing, for the longest time I reached for the state of normalcy that they were referring to and that I'd had before diabetes. I reached for it and failed dismally in the process, because of course it wasn't possible. And even though people do mean well when they talk about the "normal life" I lead as a diabetic, in the process of saying it, they are oblivious to (and unintentionally negating) all the hard work it takes to appear so "normal". Normal went out the window with 6 shots a day for 16 years followed by 6 years of life on the insulin pump, countless blood tests and the analysis of pretty much every ounce of food I've eaten and every moment of exercise I've done in the last 22 years. What's normal for me now is anything but normal in the way other people talk about it.

No, normal defined that way is not what I work so hard for anymore. Healthy is my goal now. Healthy with diabetes. Healthy in spite of diabetes. Healthy even because of diabetes. I want to be healthy and happy and comfortable with my life as it is now. My goal is to have wholeness and vibrancy and well being become my normal, and to not worry anymore about being "normal" like everyone else.

noisy momentum.

In my last post I spoke of a momentum I've been feeling around the idea of better design in the medical realm. The more I think about it, the more I think that something's afoot in the greater world of medicine and design. Something's definitely happening and I'm pretty excited about it to say the least.

Consider what the architect Michael Graves said of his first impressions of the hospital he found himself in after he became paralyzed and wheel chair bound in this Metropolis article written by John Hockenberry: "He likes to tell the story about how during the worst days of pain and uncertainty he pleaded to anyone who would listen not to let him die amid so much ugliness. After a lifetime of seeking beauty in everything he designed and obsessively making sure every detail in his physical space was selected to be purposeful and beautiful, he was suddenly trapped in a world of mundane medical objects. “Everything was ugly,” he says. “Nothing was designed. It seemed as though the makers of these objects never had to use them. There was no color, no style; nothing about any of the objects said that a human had made them. It was outrageous.” Graves said he once had his doctor come into his hospital bathroom, where he was trying to shave from his wheelchair: “ ‘Who designed these bathrooms?’ I asked him. He said, ‘Experts.’ I said, ‘Oh, really,’ and I had him sit down and look at himself in the mirror, which was too high, and then turn on the water, which was out of reach. It took him two seconds to get it." Graves, at another point in the article, articulates beautifully something that gets to the heart of the issue of design in the medical realm: "People who become disabled have to radically redesign their outlook about the physical world. They redesign their sense of privacy and their sense of independence. Yet in the products they have to use, design has abandoned them."

Amen.

Or consider what Virginia Postrel so beautifully articulated in this recent post (where she also kindly linked to a recent post on aiming for grace): "The more I think about the sorry state of health care aesthetics, the more I think part of the problem is that we have an "acute care" model of medicine in a world where chronic diseases are increasingly the rule. If you only go to the doctor occasionally, you won't care nearly as much about how things look as you will if you're spending a large part of your life in clinics of various sorts. The same is true of medical devices. A diabetic who uses a pump all the time for life will benefit far more from something that looks good than someone who has a one-time, or even short-term, encounter with some kind of medical gizmo." So insightfully put! Design matters more when you have to interact more with designed stuff. Especially when you have it interact with it 24/7. Especially when you have to use the stuff to live. Especially when you have no choice.

Amen again.

What occurs to me is that all this talk, this momentum if you will, is a result of a number of interesting, converging factors beyond the simple conversation about design. The first factor, and in my mind the biggest, is an idea I've touched on before after reading Jill Sklar's great book. When you look at the long history of human life and disease, the state of chronic illness is really a very new thing. Before the last century, people pretty much got sick and then they died. These were the times before antibiotics, insulin, vaccines, widespread understanding of hygene. These were most certainly the times before the internet or the human genome project. In the context of human history, the last 100 or so years are but a blip, and the state of living a life with a chronic illness is really a thoroughly modern phenomenon. It's an unprecedented, revolutionary thing. Science has made this modern state possible, but as is often the case with life altering innovation or breakthrough, the cultural institutions of the society, the technology surrounding the science and the realm of design, all follow behind.

The idea and experience of chronic illness is "new" when looking at the big picture of human history. Yet, as Virginia Postrel mentioned in her post, we live in a time where living life with a chronic illness or condition is becoming more commonplace. Again, thanks to advances in medicine and science, we are living longer than ever before in history, meaning that most people will be managing some kind of health condition at some point in their lives. An article by Thomas Goetz from yesterday's NY Times magazine put it perfectly, "As we learn more about disease and are able to identify it earlier, more and more Americans will fall under the rubric of 'patient'". Or as a woman quoted in that same article says, "Pretty much everybody I know over 45 has some kind of medical condition. Some people have had cataracts surgery, or they have high blood pressure, or high cholesterol or diabetes. Everyone has something. And if everyone has something, that really levels the playing field." The sheer weight and volume of more people living in that state of being, also contributes to a new awareness of the issues people with chronic illnesses face. I would posit that the result of this fact is an emerging awareness, a new sense of urgency and most importantly, a higher level of demand for a better experience around life with chronic illness.

Another key factor in this possible new momentum is of course the internet. At it's best the internet connects people who are sharing an experience such as chronic illness, allows them to share information, insight and feelings, and over time, amplifies their voice in ways never before possible. I know that's happened to me personally in writing this blog. At first it was such a revelation and joy to find others who knew the strange world of diabetes that I inhabited. Then over time, I found my voice change and become stronger as I not only understood that I wasn't alone in my journey but that my feelings and ideas about that journey were valid and true. My view of my experience became more real and as it did, my ability to analyze it and express it with some distance and clear insight got greater. For years I was stuck in the isolated and singular place of being one person with a chronic illness, lonely and struggling to fit in to a "normal" world I was no longer a part of. Thanks to the internet and blogging, I no longer feel alone and I now have a new philosophy about normalcy. A new normalcy. My idea of this new normalcy is defined by being whole with disease, rather than feeling less than whole because of it. I can't help but think that this personal journey is happening all over the internet, between blogs and forums like the diabetes OC, tudiabetes or diabetes daily, and media channels like dLife, and open source medical information websites like PatientsLikeMe, to name just a few examples. All these isolated, single individuals experiencing chronic illness, disease and physical limitations, are now starting to collectively add up to an amplified picture, source of insight and in the end, a much harder voice to ignore. It's definitely getting louder out there!

Given all of these factors, the relative "newness" of the chronic illness state in society, the fact that more e people are living in this state of chronic illness thanks to the advances in medicine and science and the compounding, amplifying ability of the internet, it feels like times just might be beginning to change. This convergence of factors might mean that the experience of disease will be considered as important as the science of it. It might mean that a new definition of normalcy can emerge in the process of this evolution. The momentum around new normalcy and better design and patient voice feels real to me. It feels hopeful and progressive to me. It feels like there's certainly a lot more noisy conversation on the way. And that can only be good in the long run.

defining normal for myself.

Lately I've noticed that I spend a lot of time navigating between feeling different and feeling like I'm just like everyone else. Normal in my living with diabetes. Different in my living with diabetes. Fully inhabiting my world, yet also tweaking my bloodsugars on the side, catching a low here, counting carbs there. On, off. Diabetes, email, meeting, lunch, diabetes, more email, more meetings, blood test, continue. Different, the same, the same, then different. It's like a lens on a camera focusing tight on a detail, then pulling back again to see the whole picture. Sometimes normal, sometimes different, whichever it is, I know on one level it doesn't seem to really matter. But then I remember what a long journey it's been to get to a place where I can see my life with diabetes, in all it's stark differences. I work hard at seeing it so that I can let it matter and count for something. That seems right to me and it's made me feel better in the long run.

Seeing the differences clearly however, does mean not being like most of the people I know, and having that be ok. Which makes sense to me too, because if being like everyone else means not having to deal with diabetes, it's not possible for me to do it anyway. So what happens is that the definition of normal becomes a definition I create. The definition of normal becomes one of being whole, healthy, contributing, alive, focusing in on blood sugars for a moment...and then back to email, just like everyone else.