My kids love to talk about superpowers — the ability to fly, to heal, to be in two places at once, or to have super-strength. We debate the merits of each one, which combinations we would choose if we could have two, etc.
I’ve come to realize that I have a superpower. We all do.
It’s our ability to connect, in real time, with our virtual colleagues and friends, all the people who have trusted us with their stories, all the people we have helped and who have helped us, even in small ways. No matter where you are, no matter who is challenging you, you have the support of a team behind you. But only if you’ve nurtured your network in good times so that they are ready to help you through bad times.
For example, an extended network of experts swarmed around me when I asked for advice on behalf of a friend in September. I captured the resources in a Storify: Palliative Care? Hospice? Rehab?
I love how Dan Fleshler, who is living with diabetes, writes about the connection he feels to his PWD community. In January, he shared why he believes donating his body to science is an extension of the online network that has been created through social media:
“The result is a community of bodies and psyches. Our very cells and neurotransmitters and stress hormones somehow seemed linked together with digital connections, as if they are part of the same shared, often infuriating Body.”
And then, this past week, I saw a community rally around Lisa Bonchek Adams, when she was blindsided by two columnists. As she wrote:
I think one of the things that has struck me is how quickly so many ppl could speak up for me because we have been a team for a while.
— Lisa Bonchek Adams (@AdamsLisa) January 15, 2014
We are never alone. That is our superpower. But again, only if we join in the conversation and reach out to other people. How do you see this playing out in your life?
Even though that we are living a huge wave of new technologies, I believe that the nature of these super powers is in our behavior. We are human beings and this is the real link between us! For this reason I believe that we are living a peculiar form of religiosity when we reestablish this magical connection. “Union Makes Force” a brazilian proverb says and I think nobody needs more Force than those who are weakened by disease.
Can you post the Brazilian saying in Portuguese when you have a chance? I love that sort of thing. And yes, I think it is magical, the connections we are able to create. When I first read your comment I thought you were going a different direction by using the word “peculiar”!
Sussanah, first of all, sorry for the late reply. The phrase in portuguese is “a união faz a força” (the union makes the force). There are many other phrases like that in Brazil (I think that is part of our culture). Another old saying like that we always use is “uma andorinha não faz verão” (one swallow does not make a summer). Whenever I can, I will use some here.
By the way, I just returned from vacation and I read the whitepaper written by Tom Ferguson and ePatient Scholar Editorial Team again (after so much time!). Congratulations for taking part in that wonderful work!
I think I will have to learn some Portuguese since I keep hearing more phrases I’d like to say with an authentic flourish. Hugo Campos taught me one about Larry Chu, executive director of Stanford Medicine X: “He has the cheese and the knife.” Something gets lost in translation, but I still love the image of Larry with all the keys, all of what he needs to make something happen.
As for the white paper, I’m very happy you’ve had a chance to read it. I was just looking at it again today. For those who haven’t read it, here is a PDF in English and one in Spanish. Tom was so far ahead of his time. We have not yet caught up to him!
I agree that we are never alone, as proven by Lisa Bonchek Adams. I have been an advocate for cleaner, renewable energy since watching natural gas production unfold in the Barnett Shale in Texas since 2004. I have stood my ground, fighting for my family, neighborhood, home, and took my fight all the way to Austin. We won our battle to keep the wells 250 feet from my back door. Yet in the years since, I have lost my health and my ability to care for myself. I am only 52 now. Over the Thanksgiving holidays, I took the long road trip to Florida to say good bye to my mother, before she passed away from lung cancer. On the 18+ hour drive home, a pro fossil energy person relentlessly tormented me on Twitter, despite my pleadings to leave me alone. I explained that I had just left my dying mother, they did not care. My friends, that I have never met, except through our common bonds of making a positive difference, a change to help our world, rallied around me to make this person go away as I sat in the back of our car and wept.
Jana, thank you for sharing this story. We all increase our “surface area” by being visible online, sometimes for the worse, but hopefully mostly for the better. I can’t imagine having to deal with a troll during such a sad time.
Jana, I’m moved by your story. Thank you.
I wonder, why didn’t you just block the tormenter on Twitter?
Thank you, Susannah. What an inspiring post! I love this image and your description of the strength in collaboration.
Hi Carole! I searched Flickr for an image with as many female superheroes as I could find. It was Corey Bond, aka roadkillbuddha, who captured this one — a 1987 birthday card.
The idea for this post sprang from something I wrote in an email a couple of months ago, telling some colleagues about how, when I was being challenged in a meeting, I felt their presence with me and spoke right up, cited data and (I think) won the point. I started noticing other examples of this “all together now” workmanship — and then this week, after seeing a community coalesce around Lisa, I had to write it.
I think that Lisa Bonchek Adams wonderfully illustrates the power of sharing. While I didn’t take to social media, it was only when I started to talk openly about my own health challenges that I started to find viable solutions. Thinking back, my path to much better health came from a collection of almost random encounters — a beach off the coast of Brisbane, a talk at a Quantified Self meetup, a Subway in San Jose, and running into several people with nearly identical sets of issues at health conferences. In each case it was choosing to share my own experiences that encouraged or empowered other people to share theirs. Through these discussions each of us built a deeper understanding that I believed improved our individual search. The ability to formulate better questions in any endeavor comes only rarely from a single genius intellect; it is far more often the work of community. The courage to be open is a superpower and I am in awe of people like Lisa or Sara Riggare who are willing to do so on a grand scale. They empower all of us.
Beautiful. For those who don’t know her, here is Sara Riggare’s site:
http://www.riggare.se
Visit and be inspired!
Thank you Susannah for this (as usual) inspiring post! I love the description of connecting as a superpower (at my wedding, my husband and me asked all of our guests to write their superpower in a book that we have kept and of course we gave our own superpowers as examples, mine being “to be able to deterring with extreme accuracy the ripeness of an avocado”. I am glad you told me that I have another one! 😉
Ian, thank you! You made my day, no, my week, with “The courage to be open is a superpower”! Apparently, I have at least three superpowers, I might need a cape soon 😉
On a slightly more serious note, people like the both of you, with all the amazing work that you do, makes my work easier since I know I am not alone.
You know, Ian, your story reminds me of some property of something on some Nova or Nature broadcast, about some lower life form (no insult intended, ha!) that is inert and makes no connections until something flips biologically and it somehow “makes itself known” to others.
To carry forward the superpower metaphor, I suggest this model:
1. Everything has some potential, which could be quantified, for connecting with useful others.
2. Unaided, a weak potential goes unharvested: no connections form.
3. But some changes cause the thing’s “reach” to be extended. Some changes happen within the “thing,” e.g. a critter emitting a pheromone, or your speaking up (changing your broadcast), or a patient going online to find info or others (changing your outreach). Other changes happen in the environment: the soil chemistry changes, or the internet expands the “conductivity” of the connection network, so a weak signal travels much farther.
When, in effect, a thing finds itself connecting with a faraway other in ways never before possible, it’s effectively a superpower.
No, wait – not never before possible – what makes it a superpower is that the connection was never even imaginable. “Fantastic,” in the sense of implausible, far-fetched, absurd – yet now real.
There. I like that. 🙂
I love this imagery – just sitting with it for a moment. Thanks, Dave!
I love your vision of the network as a superpower. It truly is. As an advocate for seniors, I help adult children help their aging parents —many of whom live far from them, and who work full-time, with families of their own. My underlying premise is that if you want to age at home then you need to tap into the resources in your own back yard, whether it be a home healthcare provider, or help with meals, transportation, your pet, or just a fabulous senior center or program nearby. I help the adult children and seniors create this network or “virtual community”. Once they’re prepared and enter this arena, even from afar, they will be able to connect with like-minded individuals and create an even more individualized team and network that they can count on with confidence and with a lot less stress. This holds true whether one chooses to age in their home, or in an assisted living facility. The key is creating the “superpower” that allows one to age as they choose.
Creating a supportive community around an aging parent — truly, that is a superpower worth cultivating. Thanks, Nancy!
For those who read French (or, like me, crib a bit by using Google Translate):
Super-pouvoirs by Philippe Ameline
Great post! I just had a call last night from a 71 year old woman who got my number because I run the local IBD support group. She said no one else would help her, that she was all alone, that her doctor only cared about her “bottom” and not about her emotional health. She talked about wanting to die. She cried and cried because her husband had divorced her and her grown children had abandoned her. She said her neighbors would not help, even though she had offered help to others for her entire life. My heart is broken for this woman, and I also identify with her. I share her fears and understand when she talks about wanting to die. My task now is to help her rebuild a network. It won’t be easy, but I have hope that it can be done. And I am very lucky because I have an awesome team to help ME so I can help her.
I have much I want to say about this later, but just one point here:
A superpower is being able to do something that transcends (what we THINK are) laws of nature, natural limits.
Sunday in London I visited Sarah Ezekiel, who at age 34, 7 months pregnant, learned she had ALS (known in the UK as Motor Neurone Disease). There are many stories between then and now, but I sat with her for three hours as she navigated the WORLD with blinding speed, using her eye-gaze computer. If you’re chatting with her online, not sitting with her, you’d have no idea she was grabbing things from the web, pasting them into Facebook, tweeting, texting, closing the living room curtains, etc, just by moving her pupils.
In hindsight I wish I’d Flipcammed the whole thing, but I was too captivated, too in the moment.
There are parallels between her superpower and all the other limitations we transcend because the internet connects us in ways that were physically impossible before. We thought they were laws of nature, but they were only limitations of our current structures.
I’ve also been recalling recently the 1988 book by Stewart Brand, “The Media Lab.” The title is double-edged: it’s about the very early days of MIT’s Media Lab, and it also asserts that the world is a media lab.
Two memorable concepts hit me back then: First, the idea of the “paperback movie” – he said publishers prevented piracy by making books cheaper to buy than to duplicate, and he predicted that as media got digitized, the same would happen with movies and music. (This was years before Napster, never mind iTunes.)
The second was the kind of thinking that happened in the “nerd scrums” (my term, not his) at the media lab, imagining what would be possible in the future. One example was “What would we do if we had unlimited free bandwidth?” In the era of 300 baud modems that was WAY out there, a science fiction world. (In 1990 I paid $1200 for a 9600 baud modem.) But today we sit at Starbucks with free wifi – certainly not unlimited, but actually watching movies come to us through the air.
If THAT ain’t a superpower that transcends natural limits, I don’t know what is. Except now it’s not.
Hell, my getting on an airplane the other day and 5 hours later landing in London is a pretty good superpower, which a century ago wasn’t possible.
We get to add superpowers when we figure out why something has been a limitation. Then, sometimes, we can engineer a remedy for it.
Susannah — if you have never seen Jim Gilliam’s 2011 talk at the Personal Democracy Forum called “The Internet is My Religion,” check it out. Similar message, and there wasn’t a dry eye in the place when he was done.
http://www.youtube.com/watch?v=-4WKle-GQwk
Yes!! I love Jim’s message. Thank you for the reminder.