CUNY Graduate School of Journalism â€‹Translator: Gohar Khachatryan Reviewer: Tatjana Jevdjic Good morning. I want you to imagine for a minute someone else's shoes. I want you to imagine that you went to bed feeling completely fine, health-wise, mentally, doesn't matter, and you woke up the next day. You woke up and one of your eyes, your left eye, let's pick your left eye, isn't working quite right. It's blurry, its color is gone, pictures look a little bit like what's behind me. What most normal people do, is immediately panic, right? Something is wrong with you, you rub your eye, you wash your face, it doesn't go away. You talk to some friends and you say, "Have you ever woken up and your eye doesn't work?" And they you look at you like you are from Mars. "You should get checked out and keep distance from me." That didn't make you feel any better. About 3 AM you end up on the web, you search on Google for "eye not working", you end up on a website, probably like WebMD, or some other sort of heavy-handed resource. And that's the worst idea, because no matter the symptom, any of these websites convince you that you're going to die in 24 hours. Your leg hurts, you have gangrene. Headache? Brain tumor. "Go see doctor now, right?" So, you ultimately see a doctor. This isn't going away and you are a little concerned. And you go through a series of tests, somewhat embarrassing, or painful, or costly and usually a combination of all three. And then you wait, right? And that waiting is a terrible time. Because we know that something is wrong, but we don't know what it is. Eventually a call comes, maybe next week, and they say, "You need to come in", and here your heart sinks. "Oh gosh, if it was nothing, they would've just said, 'Take Tylenol, you'll be fine'." You go in, cold room, by yourself. The doctor, notoriously not very friendly, sits down and says, "I really hate to break this to you, but there is no nice way to say this. You just had the first symptoms of multiple sclerosis. And this is a disease of your brain, and of your central nervous system and this is going to be with you forever. And it's probably only going to get worse, you'll probably be in a wheelchair, have trouble talking, we don't know how bad it will get. Anywhere in your brain could get affected, and there is not really any medicines to treat it. Some, they cost hundreds of thousands of dollars a year. They have side effects that are just as bad as the illness, and they don't really change anything. So, well, good luck and I'll see you next year." The idea might be that this is ridiculous, I kind of made this up or I exaggerated. But actually this happened to a very close friend of mine about a decade ago. And this was a change that was unwanted, right? Certainly not the kind of change you wanted to embrace. And it led to a series of other changes that helped tens of millions of people. And that is what I want to talk about. So, multiple sclerosis or any illness, or any doctor visit, quite frankly, it's not a choice, it's not something you want, you get a feeling of incredible isolation. It is not just the physical brick that falls on you, it is actually makes you feel incredibly alone. Put yourself in a chair of someone with that. And yet, you are not alone, right? 2.5 million of people have multiple sclerosis. And 200 more will get diagnosed just today, while we are talking here. So, the point I'd like to make though, it is not just the multiple sclerosis. Every single person in this room here today, every person who will ever hear this talk, myself included, we've all had this moment, the "multiple sclerosis" moment, and by that, what I mean is, we've all been on the end of the call that we didn't want to get. Somebody is hurt, somebody is moving away, a relationship isn't working out. We've all felt this change that was not a choice, that was not desirable. And the fact that we as humans actually have this experience together, the fact that change is perpetual and is not always friendly, that's a huge hint on how we can embrace this change in this situation. So, let's talk a little bit more about change. Where I am from, California, change is viewed as the particularly fun thing. In popular culture in particular, change is considered a choice always, it is always very Facebooky, right? If you are bored with your surroundings, you go on vacation, change your scene, if you are tired of your coworkers, you change your job, maybe get more money, work with better people. Bored with your relationship? Find a more attractive partner. Those are the changes we talk about publicly, and we are very comfortable about them. But you know what? That's not the end of change, that's only one spectrum of it. Let just be fair and take 50 percent, to be generous. A lot of changes are going to happen while I talk here today in 15 minutes or so, and I promise I'll stick to that, but in 15 minutes or so, 500 people are going to be diagnosed with a life-changing diagnosis of cancer, right? That's a pretty big change, they didn't want it, they didn't sign up for it, nobody expects that. Let's get even deeper:
2,500 people are actually going to die. They started my talk alive and when I am done talking, they won't be with us anymore, hopefully, not as a result of listening to this talk, but the fact is: almost 3,000 people will die in 15 minutes on this planet. That's pretty impressive change. Now let's not be too morbid, but stay a little bit positive, too. So, 8,000 children will be conceived during this talk, conceived not had, so that's the fun part. Now for 8,000 people that change is "hey," that's potentially exciting and good, right? But 40 percent of those children are going to be a complete accident, entirely unplanned and perhaps unwanted. The big secret. So change, let's sum it up really quickly. It is not always something that you're excited about, it is not always a choice of yours, it is not something you can plan for or want. But I will say that perhaps outside of the case of death, change presents you with a series of choices, and actually identifying those is one of the major steps towards embracing and making the best of it. So, let's go back to my situation. Here is the close friend with an illness, and that situation, and the sort of isolation, and the lack of information really hurt me. It was just, how did you take people and put that type of hopelessness on their heads, and send them on their merry way. It's just not an acceptable thing, at least I thought. And so for my own good I started to look around, I started to go online, I did the WebMDs, I did the PubMeds, and it turns out that there's thousands or tens of thousands of people who every day go to work or go to school and their job is to eradicate multiple sclerosis. It's their mission. They're trying to find treatments, they are trying to find reasons, ultimately cures to help people. And to me it was a tragedy that this knowledge and what they were finding on a daily basis wasn't making its way to the patient or caregiver or loved one community. And so I started to uncover this information and it came at a fast pace. Every day, I would say, there was a new study. And I said, you know what, selfishly I am just sharing this myself and a few people affected by this illness, but that's not fair, why not put it online. And online it went on this website called ThisIsMS. Now I want you to look at this website. It's not what we think when we think of a website. There is nothing sexy, attractive, beautiful about this. This is like the museum piece of Web 1.0. And it's black text on white background. But first hundreds, then thousands and tens of thousands and eventually hundreds of thousands of people started to come to this website that were affected by this illness. And they came because I was moonlighting, and writing a story every night, right before I went to bed. Hey, there is this research study," or what have you. But they stayed because this was an environment, almost accidentally, an environment that put them in a virtual room with other people that had this experience in common. And that turned out to be incredibly profound. This is like many illnesses, something you hide all day every day. You don't want your coworkers to know, you don't want your boss holding that against you. Your family members might say, "Hey you look fine, you know, so I guess it is not that big of a deal." And so, you wear a mask. And this happens. The people around you are wearing different masks, we all are. And here people could take that mask off, at least in the context of this particular condition. And that was really amazing for me to see. And I like to point out again, this was black and white TV, I like to say, this was not your latest LCD, 3D TV, this is the lowest technology, a couple of hours a night of my time, and while it represented some change that I made in terms of reacting to this condition being brought upon a friend, it wasn't really a major commitment that I would say. But still, sometimes when you're dealing with something with profound power, the simplest solution can unlock it. And so, I did get to the point when the profound change came. After about a year of doing this, and again, an hour here, an hour there, really didn't seem like I was putting in that much effort, I got an email that changed my life in a very very fundamental way and ultimately changed many. And this email, the text is too small, so I pulled together a few of the sentences that really mattered, but here is how the story goes. This was a gentleman with MS and he reached out. And he had been diagnosed about ten years ago. And he was in a wheelchair, and his quality of life was abysmal. And in his letter he said he was at the point of taking in his own life the night before he wrote this email. So, at the point of suicide. And he said something got to him and he went to Google one more time, and he typed in "multiple sclerosis help," and somehow, he found ThisIsMS, the website I just showed you. And he said, "I stayed up the entire night reading," and he was like, "For the first time in this decade, I feel a glimmer of hope, and I just want to say thank you." And I've told this story, at this point, thousands of times, and I get goosebumps every time, because think about how simple that website was, think about how little effort I had to put in to make that happen, and think about this person credited it with at least indirectly saving his life, right? So four sentences that changed his life, represented the change in his life. Four sentences that changed my life, and ultimately changed the world, because when I read this, that's how I felt. Not sure I had water in my mouth, but I definitely felt like I'd been smacked across the face and every other body part, because, you know, I was on my way to work, to my regular job, when I read this. And it reminded me that the talents that I had and the effort I had, would apply in this sort of small way and it really changed someone's existence, right? And it made me do a lot of things, but one of the very first things I did, which was kind of crazy, is that I quit my job that day. I loved my job, I'd been there for 4 years and it was a wonderful situation, but I realized there was something else I could be doing. And so, why I quit
my job wasn't so I could continue just building this multiple sclerosis property. What I learned in building this is that I brought people together with shared experience, and it helped them through a change in their life. I like to refer to people far wiser than me in sort of contextualizing where I saw this could go. And so, the gentleman on the screen is the guy named Jimmy Valvano. He was a very famous basketball coach in the United States, but equally as famous for his very public battle with cancer. Unfortunately he lost, a long time ago, in 1993. He was among the first people to sort of speak out about it. And about a month before he passed, he gave an incredible speech, a speech that changed my life as well, but certainly the best I've ever seen. He said two major things and I'll sum them up. The first one, relatively obvious. He said, "If you want to know someone, you need to understand where they came from, where they are and where they are going, by purpose of their experiences, so their past, their present and their future, we are a product of our experiences in life." The next thing he says, actually far more profound to me, and what he said was, "If you want to live a great day," and this is counter-intuitive, "If you want to live a great day, you want to do three things during that day. You want to laugh, â€” okay, it's good â€” you want to cry, and you want to think." I'd really let that sink in, right? Why would a great day include tears, why would include sadness? And really if you do let that sink in, you go, "Wait a minute, as humans we are emotional creatures, and the fact that we can go from the highest of highest to the lowest of the lowest in the same day, and have the thought process to understand why we felt that way, is incredibly profound, is incredibly important, right? And it also just as valid to have a bad day, as it is to have a good day. It makes us just as human. And he took it to the extreme, saying, "Well, that's a good day, you do it every week, you have a great week. I know, if you do that for an entire life, while you may be exhausted, you would have lived an extremely full, perhaps the fullest possible life that a human could. And so, keep that in mind as I lay the foundation of where I took the series of changes to try to expand this. If you boil that down and say, "We all are products of our experiences, right?" So, you could think about what we all know on Facebook, right? The experiences we talk about are the really positive ones. We always look good, we are in bikinis and we are on beaches, we talk about friends we have, that's the good side of life, pictures of our kids. But what we communally tend to neglect in popular culture and social media, is that people are complicated, right? That same person that loves their kid, may be having a serious relationship problem at home, right? They might be having a boss that they absolutely can't stand, right? We are a very interesting, complicated creature. And if you take each one of those experiences, being a parent or being a rock climber, or being someone to battle with an illness, well, I just kind of showed you with the multiple sclerosis example, there are tens of thousands, if not zillions, of people that share each one of those experiences. But remember, if you tie this all together, they represent us, or at least, I hypothesize that they do. So you could actually even think one level further. If I tie all of those experiences together, and say "There's about 30-40 things that really make me me." There is probably people that have those 30 or 40 things, and I should probably know those people, because they will probably help me deal with change, and vice versa, I've been through the changes they've dealt with and I can help them. And so, the statement I have on the board right now is an incredibly rude one, right? This is not going to make you popular at parties, telling people, "You're not a unique snowflake, you're not special," This is a very common saying, particularly in California. "We are all unique snowflakes." And the idea that's based off of that is: every piece of water that has ever frozen from the sky is different at a crystal level than any other before it and after it. And we like to think that as humans we are also part of that tapestry. I am going to argue no, There is seven billion people on this planet, right? It will be 10 billion by the time our lifetimes are through, and there is 10 times as much of those people that have lived before us, an infinity of people coming after us, and each one of them is just as complicated and just as beautiful and interesting: they've laughed, lived, loved, cried, they have done all of those things. They've had experiences that we couldn't imagine. But they have had them, and so, this all led to my evolution. From starting with the community of multiple sclerosis, patients, caregivers, loved ones, to saying, "You know what, experience is what defines us, and every human goes through experiences that they want to share, particularly when change is not a choice, when things happen in our lives that we didn't want, plan for or desire. Finding those other people could be incredibly empowering. So, let me like ground this a little bit, this website exists and it is not a figment of my imagination. 12 million people use it per month. 24 experiences every person that comes there shares, and that runs, the sports, the politics to the series from disease to the relationships, that's a pretty great deal. And 25 million experiences have been shared on this site. So if I think, anything a human can go through, in my mind, I think it is being captured on this site. So, I like to also think that, if you take Wikipedia, which is an encyclopedia of human knowledge from event-based stuff, if you combine it with the knowledge we gained from experience, then you end up having the complete representation of humanity. If aliens come a hundred thousands years from now and they see Wikipedia plus the Experience Project. The metrics that I showed you about how many people used this site, how many of their experiences are shared, those are what we call
vanity metrics. They make me feel good, right? "I spent all this time and energy, I quit my job and I took all these risks and people used my property. That's fantastic, right? But the metric that matters when it comes to embracing change is what's up there right now, right? Four out of five of the people that use this site say that their life has changed for the better, and every study that we've done in every possible way has proved that there is a therapeutic value to connecting people based on their experiences. You're not alone with what you are dealing with. When change comes, other people have had it, you can help them, when they go through change you've had, you can help them. I'll hang my hat here, and tie this up by giving my sense of how you deal with change that's not a choice. First of all, find opportunity in change. Put yourself in that patient's chair when you've been given something you don't want. This is so hard, because you can put your emotions aside, you've got to say, "Well, this happened and it was inevitable." And I can fault myself or whatever I could do to question it, but it happened. And now I've got to do my next decision. So you've got to find the opportunity in that change. For me, it was saying, "These patients go through so much pain and suffering, and mentally, they don't know the optimism of what can happen afterwards." Next big step, you don't have to be perfect in embracing change. So maybe you come up with an idea. "Something happened, I wanna do this, to deal with it and make it better." It is awfully hard to paralyze yourself and say, " I don't have the time, I have a job." I can just tell that person, "Good luck with that, let me be supportive in whatever way I can, I can walk away." But I put up a website that, you know, is relatively embarrassing even to show, given its design and so forth, right? But think about the letter I showed you. If I didn't do that, if I just sat back, there would be one less person on this planet, and that blows my mind, and it really drives it home that you really don't have to be perfect. Now that's a devil's bargain, because if you are not going to be perfect, you have got to agree to the second point, which is, you have to improve relentlessly, what I call the relentless pursuit of perfection. So, don't be satisfied, don't let change become your new normal, right? For me if it was settling down and saying, "I affected one community, that's good," and I had stopped? We've heard tens of thousands of people that have credited Experience Project with saving their lives in all kinds of different situations. So improve relentlessly and build upon what you've done, because you now know more than anyone else. And the victimization question at the end. If change is not a choice, if we are not going on vacation, it's very easy to be a victim of it and just lay back. But really change is an opportunity, goes back to identifying the opportunity. And reacting to change is like a muscle, I view it as exercise, as you become better and better in dealing with this. You can become a very very powerful advocate for this ability to deal with it. And my last point is that if everything that I've said, you should know we are just not alone, whatever we go through, positive, negative, neutral, doesn't matter, there's people out there that understand us and get us, and we can use technology to bring them together. And that to me is probably the biggest step possible in being able to embrace change that is not a choice. So, with that I'd like to say thank you, I hope you found this an idea worth spreading. (Applause) Borough of Manhattan Community College.