Everybody’s Got Something: Reflections on Rare Disease Day
Today is Rare Disease Day, a day set aside by the National Organization of Rare Diseases and other international groups to raise awareness for this group of conditions. A rare disease is one that affects less than 200,000 Americans. Taken together, however, 10% of Americans have a rare disease.
I believe that number is going to grow.
With increasing scientific knowledge and life expectancy, we will discover more diseases faster than we eradicate them. Fine-tuning our scientific “vision” will allow us to see nuanced differences between conditions. Our increasing reliance on genetics for diagnosis and treatment will further personalize the lens through which we see conditions.
Me and the orphans
I have two rare diseases (sometimes known as orphan diseases), not related to each other. I was diagnosed with the first at age 6 and the second at age 15. Though eminently treatable (compared to many other conditions in the rare disease database) they do have a daily impact on my life.
That said, I consider myself lucky: lucky to have been born into a family that took my symptoms seriously, that sought the best treatment, and that could afford to pursue those therapies. I’m fortunate to have found a life partner who took it upon herself to learn more about these conditions than I know, and to stand patiently by my side as I continue to confront them in adulthood. She made the diseases “ours,” not just “his,” and that alone makes me confident I found the right person for me.
Coping strategies
In 1997, I set up a support group for one of my rare diseases. It’s an endocrine disorder with a relatively simple treatment. Untreated or undiagnosed, however, the symptoms can be insidiously devastating. Caught early, and treated reliably, the patient can have a semblance of normalcy. Otherwise, the disease becomes as much a psychological one as a physical one. The support group I set up was online: the Internet, it seems, was made for connecting just my kind of people together.
Today that group has 1700+ members, and I’m not very active in it as I once was. But the traffic on it is as vibrant as ever. Read the messages and you’ll see complex patterns: lots of similarities, but lots of differences, too. The disease is the same from person to person, but each one is equipped differently to cope with it. They internalize it in different ways, and use it to magnify their insecurities, or obscure their strengths.
For many members, the mere existence of a support group is therapy enough. In the early days, most of us expected to go through this condition alone. The doctors that treated us generally hadn’t heard of the condition, much less treated other people with it. With a support group came sympathetic voices, empathetic ears, and myriad information and advice.
Everybody’s got something
When I first set up the group and still watched the traffic on the mailing list I felt a strong bond with the other members: we share so many life experiences. And yet, I couldn’t help but feel that each of us was dealing with a different disease. That may have been the moment when I adopted “everybody’s got something” as a sort of motto, incorporating it into the philosophy of my early adult life.
It is about as close to compassion as I get, though not for lack of trying. No doubt compassion is hard work, but it seems as most people aren’t even trying any more. I can’t say whether people are feeling less for each other, but I can say that people aren’t doing much about it. I hope this doesn’t come across as cynical ramblings of a man with a few years’ experience under his belt. Daily interactions with most strangers reveal a stark lack of compassion. Daily accounts of global news show this playing out writ large.
The rare disease is a double-edged sword. On the one hand, the increasing specialization and customization of medical conditions implies a greater focus on “me”. As people are confronted with increasingly individualized conditions, where they may never meet anyone else with the same one, they are out of necessity turned inward. Each person faces his or her own natural disaster, not one that affects an entire community.
On the other hand, people with rare diseases realize that they aren’t alone. They see what I came to see: my demons look and act differently from yours, but they are no less significant, relevant, or impactful. It can be easy to dismiss one’s own plights (as my peer group does frequently appending tweeted complaints with “#firstworldproblems”) but plight is plight. Just because someone else is suffering from something, perhaps more devastating or more debilitating doesn’t make my suffering less important.
And in the context of me in my life (or you in yours) obstacles and challenges can’t be compared to those of another. It is this, the emergence of unexpected challenges in unique contexts, that gives us our united front. It is in this confrontation we find our compassion for others. Whatever I’m dealing with, you’re dealing with something equally complex, equally challenging, and equally consequential.
My rare diseases have taken much from me. But what they’ve given me is a perspective that I doubt I could have gotten elsewhere. That said, you don’t need a rare disease to have this perspective. Everybody’s got something, and not just a medical “something”. That fact doesn’t diminish what you have — the challenges in your life you don’t get to choose — but don’t let your own challenges distance you from other people. As we increasingly confront different things, we need compassion more than ever to cope, to make sense, and to heal.
Silly Amazon Prime Business Rule
A few weeks ago, my wife got an email from Amazon saying that she could no longer take advantage of Amazon Mom benefits. After a brief exchange with customer service, she learned that because she shares my Amazon Prime account, the Amazon Mom discount on diapers no longer applies.
We’re talking about 15% off diapers.
Seems like an easy fix: Make Sarah the Amazon Prime primary account-holder. Of course, this doesn’t appear to be possible through the Manage Prime Account.
So, now, for all the world to see, the email I wrote to customer service. I’ll be sure to post their response in the comments.
Currently, my wife and I are Amazon Prime members. The primary membership is attached to my account and shared with my wife. I’d like her to have the primary membership. Please let me know how to accomplish this.
Why do we want to switch?
My wife is no longer allowed to take advantage of Amazon Mom benefits through our Amazon Prime account. According to your policy, only the primary account-holder can use Amazon Mom benefits.Why do we care?
Frankly, I’m sorry to bore you with the details, but it’s your silly rule. In our house, Sarah’s in charge of ordering all the stuff for the kids. She stays on top of this stuff. I order the stuff for the kitchen — paper towels, garbage bags. But you already know this. You know more about how we run our house than my own mother. Not that she hasn’t tried to find out.The question is, why do YOU care?
Seriously, Amazon. The diapers come to the same house. We pay with the same credit card. Why do you care whether the Amazon Mom account is attached to the primary Prime account or a shared account.Thanks,
Long-time customer, First-time complainer
Dan
As someone who designs for the web, I’m no stranger to silly business rules. Remember when you couldn’t return stuff to the store that you bought online? This seems like that, only more arbitrary and more obscure.
Book Review: Meals in Minutes, by Jamie Oliver
My wife and I peg my transition to “family chef” at around the time our first son was born. Until then, we’d mostly shared cooking duties, but with her tied up in a strict baby schedule, it made sense for me take over. Cooking soon went from household responsibility to serious hobby.
The Secret Ingredient is Improv
For the family chef, the key to cooking is improvisation. Home cooks need to learn enough to work with what’s around the kitchen when we haven’t had time to shop. This isn’t an Iron Chef kind of thing: I haven’t been forced to cook with squid ink and styrofoam. But the family cook needs to know whether he can get away with making Meal A when he’s missing ingredients X, Y, and Z.
While the Best Recipe series has been a staple of our kitchen for more than a decade, Bittman’s “How to Cook” cookbooks were eye-opening. His approach is entirely modular, going beyond 1-2 variations for most recipes. He also lists ways to extend recipes and includes tables showing how to incorporate different ingredients. For me, Bittman’s books helped escalate my skills by giving me a broader platform for improvisation.
Enter Jamie
Jamie Oliver’s Meals in Minutes: A Revolutionary Approach to Cooking Good Food Fast
is quite the opposite. Each page is a self-contained meal, including three or four courses including dessert. The ingredients list at the top of the page covers all the dishes and the method intersperses instructions for each one. In short, you follow directions to prepare a meal, not to prepare each individual dish.
Jamie Oliver is not the kind of person I’d want to go have a cup of coffee with. He strikes me as a bit of a goofball. (Not that I’m not a goofball, just a different sort. To be fair, I’m not sure I’d want to coffee with Bittman, either.) But we see eye to eye philosophically, and Meals in Minutes culminates many of his ideas. In short, Americans should be cooking more. (Not eating more, mind you, cooking more.) Our cultural dependence on convenience and consumerism has made us–as a whole–lose perspective on what it means to invest time in our food. Beyond this, his message is one of encouragement: You can do this. For Americans who are stymied by the kitchen, he seeks to make cooking not just accessible, but meaningful.
To that end Meals in Minutes is a mixed bag. There are some things I love about this book:
- The design is beautiful. The method is easy to follow visually, and not having to turn pages is, surprisingly, one of the best things ever to come to my kitchen.
- The meals depart nicely from family cook staples like “chicken, rice, and steamed vegetable”. I’m making things I didn’t think would be easy to do.
- The recipes have a nice mix of fresh ingredients and pantry items.
- The method is efficient. Both recipes I’ve prepared in well under an hour.
- For more experienced cooks, Jamie’s recipes have some nice techniques you can borrow.
What Kind of Chilis?
Some reviews have criticized the format, since it’s not easy to make just one recipe. These reviewers, I think, miss the point of the book. Instead, the main drawback of Meals in Minutes is in the ingredients. There are some pretty obscure ingredients, and Oliver offers no guidance on substitutes.
I’m reluctant to experiment with substitutions since the balance of the method seems to depend so much on the ingredients. That said, I used jalapeno chilis instead of scotch bonnet in the Jerk Chicken. And when Sarah couldn’t find mixed organic mushrooms, we just used shitake in the Mushroom Risotto. (I know, I know, First World problems.) With the success of these meals, I’ll definitely use the book again.
What’s Next: Chicken Pie and Asian Salmon
There are at least half a dozen other meals in the book I want to try. (About a third of the meals involve red meat, and I only eat fish and fowl, so getting 8-10 meals out of the book is actually a really good ratio.) I’m a sucker for chicken pie, and Oliver’s meal includes that with some nice vegetable sides. He also has a chicken peri-peri meal with dressed potatoes and arugula salad. I’m eager to find a way to use frozen salmon in a recipe without it tasting like it was frozen. Meals in Minutes has two–asian salmon and crispy salmon–that look worth trying.
Bearing in mind that Meals in Minutes may send you on a wild good chase in your grocery store, it’s a worthy addition to the family cook’s bookshelf. It will inspire me to add new meals to the rotation and expose my cooking to some new ingredients. It will teach me to be more efficient in the kitchen, and add some new techniques to my repertoire.
Surviving Design Projects (Dan’s little distraction)
The quick version
Surviving Design Projects is a collection of ideas about managing conflict in creative environments. For now, it’s a blog that deals with three things: Situations — the circumstances that lead to conflict. Traits — the aspects of designers’ personalities that may contribute to or help them solve conflict. Patterns — techniques for addressing conflict.
Why conflict management?
The first edition of my book Communicating Design includes some thoughts on how to present and use design artifacts — sharing a site map with the programmers, for example. The second edition expanded on this, suggesting a repeatable, adaptable outline for leading discussions about design. From the outset, I knew that the artifact in itself was small consequence to the success of the design project. Instead, it was how the designer used the artifact to advance the project.
Advancing the project is more than just hitting milestones. It’s soliciting feedback and validatation. It’s helping the project team understand implications. it’s ironing out details in working sessions. In short, it’s getting everyone not just behind the design concept, but the approach to design as well. This ongoing alignment effort is where conflict is incubated. No team is ever perfectly aligned, and that’s where conflict emerges.
I’ve facilitated dozens of workshops on deliverables, and similar conclusions emerged from every one. Workshop participants report that their greatest challenges aren’t solving design problems or representing their ideas through artifacts. Instead, design teams the world over struggle to deal with the conflict that arises in these endeavors. They mention lack of engagement, or stepping on each others’ toes, or working at cross purposes, or general creative differences. They mention confronting demanding bosses and unreasonable clients. They roll their eyes remembering that one person who caused so much trouble.
Through these discussions about creating design artifacts, I learned that my initial efforts to provide a framework for talking about them wasn’t enough.
So, what have you been doing?
For the last several years, I’ve been thinking a lot about this, asking myself questions like:
Why is there conflict on design projects?
What are the different kinds of conflict on design projects?
What would it take to ensure a conflict-free project?
Are successful projects always conflict-free?
What techniques do we use to moderate conflict?
How can designers be more self-aware?
I’ve done a few things in the public eye on this topic:
- Co-facilitated a workshop with Chris on Difficult Conversations
- Presented some ideas on how to deal with difficult situations at the Web App Summit and at a NYC UPA event
- Wrote a few blog posts on self-awareness
- Presented a virtual seminar entitled Surviving Design Projects for UIE
Throughout this thought process, I sought a way to make the topic practical. Ultimately, collecting sob stories about challenging projects is cathartic but otherwise irrelevant to my day-to-day work. About a year ago, shortly after I finished the second edition of Communicating Design, I was reviewing some old notes and realized that I could capture conflict management techniques as patterns.
Patterns, situations, and traits
A pattern in interface design is a starting point solution for a typical problem. There might be a pattern, for example, for the log-in process, describing the basic elements of the interface and the flow of the interaction. Likewise, conflict management patterns provide simple starting points for approaching a difficult situation. These patterns suggest behaviors or things to say to deflate or redirect or avoid the conflict. Here’s an example:
Pattern: What’s your first step?
Ask colleagues what their immediate activity will be upon receiving a new assignment.
Use when:
- Employing a new methodology or technique, and you’re not sure how your team will proceed.
- Team members can’t offer specific answers about how they’ll contribute to the overall project or how they’ll address the project’s objectives.
Like design patterns, conflict management patterns have a brief description and a “use when,” which defines appropriate circumstances for trying the pattern. Upon developing them further, I’m confident I’ll identify other aspects I can use to structure them further. Many of these patterns are variations on some big themes like “listen better” or “start small”.
It was easy to identify other elements of conflict management — situations and traits. Situations are circumstances in which someone’s behavior is threatening to derail the project. I’ve also been thinking about how designers can be more self-aware — the traits that define our style of participation and contribution to design projects.
Where are you now?
These three aspects of conflict management — situations, patterns, traits — are described in my new blog Surviving Design Projects. At this point, I’m using it as a dumping ground to capture these individual elements.
What’s missing is the connections between them: how patterns apply to different situations, how traits may cause or avoid situations, and how patterns might challenge designers with particular traits. For each situation, I could point to half a dozen patterns that would help deal with those circumstances. For each pattern, I could tell a story about how it was used successfully. For each trait, I could talk about how different designers exhibit the trait differently.
What’s next?
To be totally transparent, I’d like to turn this into a book — a handbook on dealing with conflict in creative environments. Threaded with stories about how designers and design teams face conflict every day as a natural part of the process, the book would help them deal with this ongoing tension.
For now, I’m content to mould the bricks, but if you’re a publisher and think this is remotely interesting, please drop me a line.
Workshop: A visual approach to planning web sites
Join me in October and November for two workshops I’ll be leading the DC area. Each is a half-day on a Friday afternoon (when nothing good ever happens anyway) and we’ll dig into flow charts, site maps, and concept models–diagrams essential for planning web sites.
Here’s what we’ll talk about:
- How to create beautiful and effective diagrams describing the underlying structure of web sites.
- How to use those diagrams in planning web projects and how pictures can make the process more efficient.
- How to “level-up” your skills in flow charting and site mapping.
- How to walk through these diagrams with clients and colleagues.
Here’s what you’ll get:
- A four-hour workshop in a comfortable training room in the heart of downtown Bethesda (October) or DC (November).
- A workbook chock full of examples.
- A chance to win a copy of the 2nd edition of Communicating Design.
The workshops are $299 each, but with early bird pricing you can save 15%!
Visit EightShapes.com to learn more.
The Fun of Understanding
My son likes watching me play Scrabble on iPad. At some point between waking up and finishing breakfast every morning he says, “Let’s see what’s going on with Words with Friends,” which is the name of the Scrabble app. (He knows my opponents by their screennames.) The other day, he opened up the app and saw I’d played GEEK (on a double-word score for 20 points!) and asked me what it meant.
It took a moment. Geek is a semantic challenge, a modern word with multiple meanings. Here’s where I landed:
“A geek is a person with a strong interest in science and technology,” knowing that the word geek can be used in many other contexts, but I thought it was a reasonable starting point. The rest of the conversation may not be so interesting to you, but I record it here for posterity.
“I like science!” Harry has They Might Be Giants’ Here Comes Science album and listens to it religiously. He truly does love science. “I’m a geek… What’s technology?”
“Technology are things like computers and iPads.”
“I like technology, too! I’m a geek.” You are, son, and were the day you were born.
That’s just it, Harry was born into geekiness, which I realized as soon as he claimed his own geekhood. I also realized that the definition was much more subtle. So, I did what any geek would do and posted the following on Twitter:
HB wants to know the definition of geek. Your preschool-appropriate response?
The responses ran the gamut, and were perhaps a lesson in parenting style more than in the definition of geek. A couple guys (@daveixd and @yoni) provided dictionary definitions, which involves some kind of circus freak. Here were some of the more relevant ones:
@paintingblue: someone who presses lots of buttons and sits in a dark little cave happily drinking coffee. that is what i tell my 3 yr old
@vanderwal A person who pays attention finer points of interest and has incredible focus on a subject – could be a shark geek
@angelacolter I would say, “a very smart person who is good with computers.”
@nwhysel A tech geek can do weird, techy things and they temselves are odd and difficult to understand.
@willsansbury “People like daddy?”
@uxcrank Sandbox definition of Geek: “Someone who cares way more than you do about a thing or a kind of things.”
I love all of these definitions, but my favorite by far was fellow dad and author Gavin Bell:
@zzgavin someone who enjoys understanding how things work and how to change them, sometimes just for the fun of the understanding
That phrase, “the fun of understanding,” resonated with me. It’s the thread of what my group of friends have in common. It’s what drives much of our business strategy at EightShapes. It’s what helps me be a better parent.
It also extends the definition beyond science and technology. At lunch, I brought up the topic and my wife used “football geek” as an example. This isn’t a nonsense phrase: it’s a meaningful combination of words. Gavin’s definition fits nicely (except the part about “changing how things work”) because football geeks want to get inside the inner workings of the game, and they do so by studying every aspect. They do so because they enjoy it, but understanding the game in greater detail is, for them, fun.
Wikipedia’s entry on geek (perhaps I should have turned there first, instead of Twitter) elaborates on these ideas, and, of course, describes various controversies associated with the term. They talk about how a pejorative has been appropriated for self-identification, and how the term remains distinct from nerd and other similar words.
Anyway, during lunch, as my family reflected on the term, I couldn’t help but consider geekery in the larger context of America. The observable anti-intellectual trend runs counter to “the fun of understanding.” Is this what it means to live in a post-9/11 world? Is this the inevitable consequence of a two-party system? Does politics have to polarize the mere pursuit of knowledge, too?
A couple years ago, the Washington Post ran an article called the Dumbing of America, by Susan Jacoby. For people who make their living on technology, who were intellectually gestated in liberal arts academia, and who face the modern challenges of parenting, the first half of this article is an incredibly disappointing diatribe against technology. Pointing a finger at “video culture” as the cornerstone of anti-intellectualism in America is like blaming the automobile for the widespread obesity. One of the conclusions she draws, however, is interesting. America faces not only anti-intellectualism, but anti-rationalism: there emerges an “arrogance about that lack of knowledge”. More scary than what Americans do not know is that many have “smugly concluded that they do not need to know such things in the first place”.
Arrogance knows no boundaries. Does geekiness also include an intellectual arrogance? Does the emergent “geek chic” style point to something beyond self-identity, toward self-importance? Is this the connotation encoded in the politically charged word “elite”? I hope not.
I hope Americans who embrace intellectual pursuits see it as separate from a culture or style. I hope they see it as a responsibility to themselves, their country, and their children. I hope they understand it as their contribution to society, on par and just as meaningful as other contributions, and not something that elevates them above others.
Life without Cable
Summary: In which I geek out on our home entertainment set-up for those considering canceling their cable or satellite subscription. Wired just ran a story on this (not yet online), with a comprehensive guide to equipment and a cost comparison.
Home entertainment is at an adolescent stage, and I’m not talking about the content. Like a kid growing up, the adolescence of home entertainment electronics is a little awkward, a little different for everyone, and nothing quite fits right. Unlike the simplicity of cable with a set-top box, using the Internet to pipe content in to the home is a little complicated and a little messy, but opens up lots of possibilities. Still, shedding the predictable, simple existence of home entertainment childhood is now feasible.
My family dropped our cable subscription in January. We haven’t looked back. Our motivation was to save a bit of money, but one of the happy consequences is watching less TV, and watching more quality programming.
The set-up
Attached to our television is a Samsung Blu-Ray player with an internet connection and a Mac Mini.
The Blu-Ray player connects to the internet through the Mac Mini’s shared web connection. It provides access to our Netflix “play now” queue, as well as Blockbuster movie rentals, Pandora stations, and YouTube. We never use those, though, just the Netflix.
The Mac Mini has an Elegato EyeTV attachment, with a high-definition antenna. We pick up about 20 channels over the antenna. The EyeTV software allows us to record programming over the air. We mostly use it to record kids shows off PBS, but the selection of kids programming streamed over Netflix grows every day, making the broadcast content less necessary.
The one advantage to using the Mac Mini as a DVR is that I can move that content to the iPhone or iPad, which then gives us kids video on the go.
What we use
For watching broadcast television, we mostly use Hulu.com. I investigated other services, like Boxee, but the simple, web-based interface for Hulu was attractive.
My 4-year-old son gets to watch TV twice a week, and we almost always stream episodes of Kipper or Blue Planet through Netflix. (The kid is nuts for talking dogs and David Attenborough’s narration over obscure marine life.) Alternatively, he’ll watch a DVD of Mama Mirabelle or Thomas and Friends. Mama Mirabelle is a National Geographic show that’s broadcast on PBS, so we can also record it off the air.
We will occasionally watch streamed Netflix videos, usually movies or period dramas. Otherwise, we watch a lot of DVDs from Netflix, which is our primary method for watching movies.
There are a couple shows we like but unavailable on Hulu. These are accessible through the channel’s web site (like The Daily Show) or we pay for a subscription on iTunes (like Mad Men). If we can wait, we hold off until the show comes out on DVD.
What about sports?
Apparently, we’ve never met. Hi, I’m Dan.
Sports aren’t big in my house. We wanted to watch the Olympics but NBC’s insane restrictions about showing the content online made that challenging. Wired’s article has some good information about online subscriptions to sports. Frankly, forgoing cable and paying $120 to watch a full season of baseball on MLB.tv strikes me as a reasonable deal.
The consequence
Less television. Less crap. Just no other way to say it.
After spending some time with the new set up, I realized that one advantage is that there are multiple sources for content. This was not something I had thought about prior to life without cable. Between Hulu, network web sites, Netflix, Amazon, iTunes, and the antenna, we have lots of different ways to get to content. The same content (or, more specifically, episodes in the same series) is likely to appear in more than one of these channels. Those options give us flexibility, and we have an implicit hierarchy that starts with free channels. We can choose how much we spend on a show by paying more (for example, with iTunes) to have content that we’d otherwise have to wait for.
