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That Time I Was In Pain For 10 Years

In the last couple years I’ve gained weird insight into the constant chronic pain that defined my life from 15 to about 25. I’m 36 now, which is part of what makes it weird to me. I guess it’s incredibly normal and prosaic actually, you know: hey! We do learn things as we get older. Surprise! But also what’s weird is that the information seems so simple now. The pain was so all soul-consuming and perspective-distorting it is unbelievable and annoying that part of what caused it to continue was so simple and, worse, caused by my own brain and body trying to protect me. But there are mega magical lessons in this for me, despite how infuriating it is, so figured I’d share.

In a nutshell what happened was I got injured on my neck near a nerve that runs a lot of the communications and paperwork up in the brainal area and across the feelings system (technical terms). And that nerve hit the red button, danger!, and all my bones and muscles complied to come to the rescue. From what I can tell, they tried hard to build a fort around the back of my neck, bending vertebrae backwards to make a wall, dragging shoulder blades up to the ears, yanking the back of the head down and curling the spine ducked low. In pain I went to a thousand specialists of various flavours and tried to uncurl myself too hard in the opposite direction: yanking up and straight, arms tight next to the body, ribs pulled in close to the heart. And the nerves kept shuddering in fear, and getting twisted and plucked, the left side of my face and lungs jerking in pain like strings on fire, like a heart attack, etc.

Someday I’ll tell you the story of how it stopped, but for now it feels kind of boring especially since I didn’t really understand what had worked. Suffice for now to say, it involved a bunch of stuff most notably Alexander training, and after 10 years it lifted. And then, just last year around this time, it happened again. Not the migraine, thank goddddd; when I feel like that might come back I get all weepy and freaked out. 10 years is a long time to live with that and it’s made me jumpy with fear that it might come back someday for good. No, last year it was just the return of the bright gold line of pain along my left side from my spine to across my heart, like a band that won’t let me breathe. I went to the hospital and stayed while they did all the tests. Not a heart attack, good you checked, etc. The same old answer: it’s nerves and we can’t see nerves, or do much to help you with them when they go so subtly, so spectacularly awry.

What helped was to ignore the dictates of my red alert brain screaming hold still or else, screaming you are dying, screaming incoherently – a message that makes total sense in the face of nerve pain. But ignoring it in favor of a gentle jiggle changed everything. Bear with me. Shaking the pelvic floor (booty), shimmying the shoulders in defiance of the feeling that everything would shatter, wobbling the heavy head until it felt allowed to lift off of the top of the spine and float as it is miraculously designed to do… with a gentle vibration the knife loosened. The body escaped the constraints of the freaking-out mind. The infinitely vast and delicate nerves remembered how to find their way back into place. When that particular pain comes now I can literally shake it gently off. And the neurons begin to learn a new post-trauma pathway.

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Here are some of the lessons I try to carry with me from this experience: thinking about small repeated gestures and systems and tweaking them in the tiniest, goofiest ways changes stuff, sometimes in a big way; gentleness and joyful small action can defeat even decades of pain. Being angry that something so small and stupid could keep me imprisoned is not a good reason to stay there. Being grateful for any breath I get is not at all unreasonable. Sharing as much love and fun and as many ideas as I can while I have clarity, while I can find any perspective beyond a shadowing circle of pain, is just plain common sense.

Mega caveat: I know people who have lived with chronic pain so long and profound that this idea of changing it with posture, dance, and different kinds of thought about body is probably exhausting and insulting. Fair enough. If you know anyone like this too: please love them as hard as you can and lend them your strength, because they are using all theirs all the time in ways you can’t see. If you live with this, I love you and I’m thinking of you every day. Everything about my experience was probably different from yours except this bit: in pain you are in isolation. I know you are doing what you can just to make it to the next minute, but I also believe this: there are secrets in your mindbodyheart, secrets the world can benefit from if you can share your own weird world, and especially the stories of your seeking for ways out of the labyrinth. So much of the world is in pain, the stories of how we face and fight and are defeated and triumph and fight again are alchemical and will be how we unlock new ways forward… even if it’s just by one screaming dancing bloody two step at a time.

 

 

 

 

 

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Intersections: Ville et Numérique

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Below is the event description, full text (in French) and slides for my presentation at the first #Intersections. I was thrilled but nervous to be included: it was my first time giving a presentation at this level entirely in my second language, and I had written my talk from a deeply emotional place following the US elections. But after the talk I had some really inspiring conversations with leaders in Montreal who are moved to use their positions and their know-how to create digital and community links aimed at the greatest challenges we face. So let’s keep our hopes held high, keep reaching for each other, caring for each other, facing our fears, and building systems that reflect our values. It’s all we can do, and it’s everything.

Le Printemps numérique vous invite le mardi 29 novembre au Centre Canadien d’Architecture / Canadian Centre for Architecture (CCA) pour la première édition de sa nouvelle série de 5 à 9 : #intersections / transformations numériques. → intersectionsmtl.com

Montréal ville à l’honneur : Dans le cadre de cette première édition dédiée à la ville et au numérique, panélistes et participants sont invités à échanger sur la façon dont le numérique transforme nos villes, nos réalités urbaines et nos rapports aux autres. Le panel rassemblera 5 experts montréalais:
► Patrick Gagné, Associé et Chef de produit, Taxelco / Téo Taxi
► Stéphane Goyette, Directeur du Bureau de la ville intelligente et numérique, Montréal, intelligente et numérique
► Albert Dang-Vu, Président directeur général, Mirego
► Risa Dickens, Directrice de marketing et de communauté sénior, Yelp
► Jean Bérubé, Directeur du développement, Montréal en Histoires.

La discussion sera animée par Marika Laforest, Chargée de projet pour Plan culturel numérique et Lab culturel à Culture pour tous.

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Pour être honnête, je me débattais sur ce que je pouvais contribuer aujourd’hui. Je travail du côté de l’engagement communautaire avec des plateformes numériques – donc ma perspective n’est pas celle d’un ingénieur ou urbaniste.

Mais la chose la plus difficile pour moi c’est jours-ci c’est le climat politique dans lequel nous nous retrouvons suivant l’élection américaine. Quand le racisme, le sexisme et l’anti-environnementalisme prennent place au pouvoir, il me semble essentiel de se recentrer, se questionner, pour s’assurer que le travail que nous faisons s’enligne avec nos valeurs.

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La journée suivant l’élection, le PDG de Yelp, Jeremy Stoppleman, nous a envoyé un courriel qui disait en partie:

Nous ne pouvons pas permettre à la rhétorique politique de taire notre voix ou de vaciller notre confiance…Tous les jours, nous aidons des millions de consommateurs à connecter avec les “autres”, à qui ils n’auraient pas nécessairement confié leurs santé, leurs maisons et leurs estomacs. Bien que nous ne pouvons réaligner le pays ou le relever de son angoisse du jour au lendemain, nous pouvons encore construire des liens humains positifs à travers Yelp – un par un, personne à personne.

Pour moi, ceci est l’essence de ce qu’on fait chez Yelp, et que je crois dirige les projets ayant le plus d’impact sur une ville numérique. Bâtir la confiance, les nouvelles connaissances, bâtir des relations, bâtir la compréhension.

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Les projets “villes numeriques” ou “intelligentes” ne parviennent ni à capter l’imagination du public ni à avoir un impact positif et durable lorsqu’ils se résument à la collecte de données de surveillance, et ainsi accroître la segmentation et la division des villes.

Ce qui compte le plus pour moi c’est quand le numérique nous attire dans le réel d’une nouvelle manière. Ou, selon le point de vue de Yelp, quand les interactions numériques peuvent nous attirer vers des nouvelles parties de la ville, dans de nouveaux coins jamais visités, aux portes de petits commerces ou des humains, comme nous, travaillent d’arrache pied, non seulement pour gagner leur pain, mais pour rassembler les gens autour d’un festin inventée par leurs parents, leurs grands parents.

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Quand j’ai commencé avec Yelp il y a 5 ans on venait de dépasser 20 millions d’avis. Cette année, nous avons atteint 115 millions. 80% des clients qui utilisent Yelp pour chercher un commerce effectuent un achat, guidé par cette recherche, dans la même semaine. Une étude réalisée par Le Boston Consulting Group a révélé qu’une entreprise qui revendique sa page Yelp d’entreprise gratuite a, en moyenne, vu son revenu augmenter de 8000$.

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Une caractéristique moins connue mais essentielle à la croissance de Yelp en Amérique du nord a été le programme de gestionnaires de communauté. Sois à temps partiel ou à temps plein, des employés des quatre coins de l’amérique du nord sont charger de créer des nouveau liens dans leurs villes.

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Les gestionnaires de communautés de Yelp commanditent les festivals locaux – nous sommes heureux d’être partenaires avec Roller Derby de Montréal, MTL a Table, Fierté MTL… la liste est longue. Nous mettons en vedette ces partenaires et des commerces locaux dans notre bulletin électronique et à travers des médias sociaux.

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Aussi, nous organisons mensuellement des événements pour rassembler notre communauté hors ligne. Tout ça pour dire: nous explorons nos villes ensemble.

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J’organise ça localement, avec l’aide de Mariko et Géraldine, alors venez nous saluer et nous trouverons ensemble des moyens d’amplifier ce travail de connection en ligne et hors ligne.

En terminant, j’aimerais partager 2 projets Data de Yelp auxquels je suis particulièrement intéressé pour leur impact sur la communauté. Ensuite je ferai une petite annonce à propos d’une compétition locale que nous organiserons ici en 2017, et finalement je vous conterai une petite histoire personnelle et un peu embarrassante… just to keep it interesting.

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Donc premièrement, les projets de data: Il y a quelques années, Yelp a travaillé en partenariat avec le gouvernement des États-Unis pour lancer LIVES open data standard – une nouvelle norme de data ouvertes. Maintenant, des millions de consommateurs trouvent les points d’inspection des restaurants lorsque cette information est pertinente: lors d’une décision dans le choix de restaurant. Des études démontre que la mise en évidence de ces informations a un impact positif – les entreprises et les clients les utilisent pour faire des choix plus sains. I would love to see more Canadian cities adopt this standard.

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Yelp a aussi collaboré avec ProPublica pour intégrer les statistiques sur les soins de santé sur les pages Yelp des établissement médicaux. C’est en faisant un survol des pages d’entreprises de milliers d’hôpitaux, de foyers pour personnes âgées et de cliniques de dialyse que s’expliquent les statistiques, notamment le temps d’attente dans les salles d’urgence…Avec ça, les millions d’utilisateurs de Yelp ont plus d’information quand il sont au milieu des décisions les plus critiques de leurs vies.

Je suis super inspirée par ce qu’on peut faire prochainement avec la base de données et la communaute d’utilisateurs de Yelp.

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Depuis 2 ans, j’organise le seul hackathon de Yelp basé dans la communauté, et c’est ici à Montréal. Cette année, à partir du mois d’avril, nous allons mettre en vedette les meilleures applications locales. Nous inviterons les projets montréalaises d’intégré le API Yelp et à partager leurs innovations en ligne. Le public votera et les favoris seront célébré au gala Yelp le 8 juin au musée McCord.

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Donc, c’était ça mon annonce et voici ma dernière histoire à propos du monde numérique et de la ville. Comme plusieurs montréalais, j’ai vécu ici la majeure partie de ma vie sans avoir un médecin de famille. J’ai appelé d’innombrables endroits, mis mon nom sur plusieurs listes- en ligne, dans le système créé pour ca – et j’avais l’impression de crier dans le vide. Le sentiment de ne pas parvenir à prendre soin de soi-même peut vraiment nous rentrer dedans. Donc, j’ai fait ce que tout être raisonnable, presque Milléniaux, ferait, j’ai publié un appel à l’aide sur Facebook. J’ai reçu près d’une trentaine de commentaires inutiles, ainsi qu’un message très inattendu d’un gars que j’avais rencontré via Ok Cupid il y a genre 5 ans. Après 5 ans de silence, ce rendez-vous OkCupid m’a présenté à une jeune femme super cool, qui est devenue ma médecin de famille.

Je vous conte tout ça parce que j’aime bien rendre les choses personnelles et inconfortables. Non, je vous raconte cette experience parce qu’il m’a été essentiel dans mon travaille de me rappeler que la communauté est agnostique des platformes.

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La vie et la connection en ligne est comme la vie en forêt, il trouve un chemin. Et si nous construisons des systèmes qui ne correspondent pas aux chemins naturels et diversifiés de la vie, alors la vie va tout simplement contourner les systèmes que nous avons bâti en les laissant vides.

Les gens se retrouveront: sur Ok Cupid, dans des groupes Facebook, dans les sous-sols d’églises. Les systèmes qu’on créeit reflètent le caractère de la culture qui les constitue: si nous construisons des systèmes d’une maniere ouverts et réactifs; axés sur les valeurs; visant à rompre l’isolement, à mettre fin à la pauvreté; des systèmes suffisamment flexibles pour écouter et s’adapter aux endroits où les gens sont réellement, à qui ils sont réellement; les endroits de rencontre entre la ville et la numérique vont etre vibrant et plein de vie.

Merci.

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Building Community With Bad Dinner Parties

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Something I have come to accept about myself is that I am sort of a weird hostess. I’ve been known to have a pile of people over and then get them to help me figure out a meal, and even send them running out to grab things we’re missing. Like some sort of disorganized dinner party dictator. I like to invite lots of people, strange crossovers of people, people who have never met but who I think should be friends. For a  while I just invited women, and though I’ve come to think of these as power lady parties, it wasn’t really intentional. I just like seeing these particular kinds of connection happen: amazing women meeting in a non-competitive environment full of love and excitement. I like to introduce people by listing the things they do that I admire, and then leaving them all blushing and interested in each other. I like to have men over too, don’t get me wrong, and my favourite thing is when everyone coaches each other along to make something amazing that has no recipe, and then we all sit and eat together, and drink out of mismatched cups.

I started letting people help me clean up, and that changed my life for real. One of the hardest parts of hosting used to be that moment when everyone would leave and I would feel happy but drained and then I would look around at the hurricane disaster and wonder if it had been worth it. But I was the one who would say no to offers of help, and hustle people away from the dish piles when they tried. And one day instead of doing that I just… did the opposite. I let one person help and we did the dishes together. Quickly other people came into our orbit. They laughed and tidied and it all went quickly. And we had strangely intimate conversations, I think different kinds of conversations are allowed to happen when you are sharing in a mess and a project, and because you are allowing people to give back to you for the moment you have made, and they feel anchored by purpose, and it brings everyone closer.

Over time this makes a wide net of friends who have met each other, and made food together, and danced in the kitchen late night as we cleaned up together and confessed our secrets. Community happens in all kinds of ways and places but bad dinner parties are, in my disorganized dictator opinion, one of the best.

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Networking For Introverts

Jokulsarlon Glacier Lagoon Iceland photo by Risa Dickens

Jokulsarlon Glacier Lagoon Iceland photo by Risa Dickens

If you know me in person you might raise your eyebrows at the idea of me as an introvert, but here are a couple of quick things I’ll point out: if we have ever had a conversation at social function or at an event I organized, chances are good I tucked myself into a corner with you or sat down at your table almost like I was hiding out, and when you asked about how I was doing I told you the truth almost to the point of an overshare. I am not great at staying on the social level. I prefer conversations about feelings to conversations about most other things. I love planning events where people come together, and then there’s a big part of me that would be happy just to stay home and let everyone else connect. I am more comfortable performing then chatting with a bunch of people afterwards. And I need to schedule alone time in between meetings, and sometimes solo breaks during meetings, to recover.

Figuring out that I get my energy from being alone (introvert) but that I am driven by a the big value I put on connection and community helped me understand how these sometimes contradictory drives play out on my body, and then to to start to figure out tactics to cope and succeed. And yes even to network.

I stifle a flinch when I use the word network, I don’t know about you. I don’t like the way it’s usually used; too often it feels like making fake friends so you can use them, like a spider climbing up a web. Or it rings of a desperation bought and sold to people who are financially unstable: What you’re doing wrong is not enough networking! So pay to come to this networking event or buy this audio book on networking!

That said, here are my tactics for networking as an introvert. If you made it through the disclaimers above, then this idea already makes sense to you. For some reason you have to do it, and I’ve been there, and I feel for you, and here are my personal survivor tips, jotted down with mad love.

  1. Forget “contacts”: make one friend. You can defeat that bad, looking over each others shoulders for the most important person in the room vibe, by not playing that game. I tend to get to things early or right on time, and I look for other people who are nerdily punctual like me. I also look for people who, like me, are chilling on the edges. Ideally someone who seems to be fine on their own, unsure of why they ended up there, and whose clothes suggest they are quirky, thoughtful, totally oblivious to fashion, or totally playful with it. These weirdos are my people, and I humbly suggest you make them yours. They are, in my experience, some of the smartest people in the room. They are bad at networking and they think it’s funny that you are too. They are happy to have someone approach them, gently, and chat and laugh about how awkward networking is. I have met some crazy powerful people with this move, because unsurprisingly, very successful people do not need to work the room looking for something to prove.
  2. After you meet your new friend, listen to them. Ask them questions about their weekend, their lives, what brought them there, what they’re working on these days. Just listen and ask follow up questions. Remember, you are trying to make an actual friend, try to find things about them that surprise and inspire you, that are unexpected and beautiful, that connect with things you care about or that upend assumptions you have (we all have them.) Even if you never meet again you will have gained a little life-changing kernel of goodness from this upending, so your night won’t be a total waste of time.
  3. On that note, once you’ve made a connection and then maybe that person needs to circulate (or go home and hide under the bed) here’s what I suggest: go to the bathroom. I go to the bathroom a lot in big group settings because being alone even for a couple minutes lets my brain reset. After you leave the bathroom, do a lap of the room. Call it a victory lap, you made a connection! Champion. If you see people you know that you feel like saying hi to, say hi. If you feel like grabbing another drink and chatting with someone else who looks lonely and interesting, do it. If you feel like just walking up to a group of people and saying “hi, do you mind if I network with you?” Go for it. But you know what, if you don’t feel like doing any of those things and you just feel like going home, then darling go home. You made a deal with yourself at the beginning about one friend. Go home and add that person on some social networks of your choice and drop them an authentic follow up line and you will have done something small that is wonderful and huge.

Strong communities are not built by shaking a thousand hands. They are built one real relationship at a time, and real relationships happen between people who try to be honest about who they are. Be real about what scares and challenges and inspires you and you’ll still be alone, because we all are, but you might also see yourself reflected in new ways in the eyes of lonely others and it might help us as we float along… lonely, but together.

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Yackathon 2016

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An incredibly diverse group of participants came together over Yelp Montreal’s Yackathon weekend to compete including: post-doctoral neurologists, meteorologists, masters of engineering, urban planners, health psychologists, illustrators, and self-described ‘corporate drones’ fleeing their cubicles for the weekend (fly free!). In total 15 teams delved into Yelp’s open API and Academic Dataset over the weekend, and met our challenge to mash up our data with any other open data set.

Read More Here.

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