Cancer, Social Media, and the Meaning of Small Things

On a crisp September day in 1995 — long before there was such a term as “Social Media” — I sat at my computer with my 28K modem, sobbing as quietly as I could, trying not to wake up my 3 month-old son. And I typed this question:

“I need to know how to help a young Mom with cancer. She’s only 30, she has three young daughters and not much time. Please, can anyone help me?”

In 1995 I had no MySpace, no TechCrunch, no Twitter; no Cluetrain Manifesto. @Scobleizer was probably just a mensch working at Microsoft. Bill Gates was a minor celebrity; people shook their heads about Apple’s tiny market share. AOL and Netscape were king, and when you loaded a website, you had to watch a blue bar while it loaded — long enough to grow a whole new hairstyle sometimes.

In short, I didn’t have the power tools we have today — the myriad complicated ways we celebrate of connecting to each other – our widgets, our followers, our networks.

What I had in 1995 was an amazing friend named Sabine with a buoyant smile, three young daughters… and terminal cancer.

What I also had in 1995 was access to AOL‘s chat rooms. Yep: chat rooms.

I had found the one that said, “AOLMoms.” I entered, waited for it to load, and typed my question.

I typed that question again and again as the chat scrolled down in front of me. And then suddenly:

“I can help. I am a Mom who has had cancer. I have survived it three times. What do you want to know?”

It felt like a miracle. Her screen name was MS_Tylee, and I’ve never forgotten her.

“Anything,” I typed back. “What would help?”

MS_Tylee asked me what stage cancer my friend had; told me about what kinds of foods would upset her stomach given the type of treatment she was getting; what kind of help would actually be helpful — laundry, little errands, child care and maybe meals on days around her chemo treatments.

I was so grateful. What she did was small for her — a few moments’ typing at her desk — but it was huge for me.

I printed off everything she said. Then I helped organize people who were glad to do anything they could. If you’ve ever dealt with cancer first- or second-hand, you know: you feel helpless. There’s this war going on at the cellular level, and you’re not really even allowed in the ring (even if you are the ring). So every day you figure out something you can do.

It turned out I’d need that knowledge: that same month, my mother was diagnosed with cancer. And then another friend — Dale, also a mother — a month later.

Sabine died the following June. She was one of the first people in my circle to have three kids; I learned so much from her about how to handle it. She was also one of the first people in my circle to have cancer, and I guess, to leave those children so young. As I grieved her, I just determined that I would take something from this loss; that I would help people the way that MS_Tylee had helped me.

I totally got it — long before there was Community Building software — about the Internet’s power to pluck just the right help, seemingly out of the air.

I also got that small gestures — things that don’t take much time or money — can make a humongous difference to a person who needs them. Offering to fold laundry or cook a meal. Or just taking a moment to call, even when you’re scared of what you might hear.

I learned to do what I could: sometimes it would be a lot, other times it would be small.

But it would be something. Because with cancer — or AIDS, or a sudden death, or a disaster — there are, often, no mulligans. No road back if you regret your inaction.

It’s what you can live with, you’ll pardon the expression. Or not.

A few years later, a friend and children’s author was diagnosed with late-stage breast cancer – with no health insurance. She fought hard, and eventually lost — but not before she and her family saw tremendous love and support, quite a bit from people they’d never met.

I bring this up because I have read and heard lately, several clarion calls – some, like Jeremy Pepper’s, really eloquent — for Social Media to quit its navel-gazing, its fascination with hearing itself talk, and actually do something besides vid-cast itself on Qik for a change.

See, it is pointed out, what you could do in the service of good — you with your thousands of followers; or you, who has made millions talking about the Web’s ability to connect. Or you — take a break from your videocast to shill for someone who needs help.

So true. But I’m not waiting for the Social Media stars or anyone else to make huge gestures – though it would be nice.

Instead we could do what the Web has always done best: a bunch of small gestures that people can live with.

The Web makes it easy for us to be outward, to have those moments when we shine outside of ourselves and afford someone else the benefit of grace — whether it’s of not feeling alone, or sending the equivalent of an overpriced cup of coffee via PayPal –because we can. Because both literally and figuratively, it adds up to more than it could possibly mean to us to put that actual cup of coffee in a cupholder and drive somewhere.

It’s your call. Maybe you click away from this page, shudder and never come back. Or maybe you click through to a link — read a story, send a good wish or small contribution, or put someone’s story up on your blog.

Or maybe you do nothing to help the people here, but instead take a minute to call someone who would just appreciate being remembered.

That’s all I’m sayin’. Just find the courage. Or the compassion. But it doesn’t have to be huge.

For me, I do this for Sabine. For my mother. For MS_Tylee. For all the many people we have lost to cancer and other illnesses, and for those who are still fighting. For Marc Orchant. For my friend Steve Koloskus (and believe me, he is a whole ‘nother story, and merits his own post sometime). For anyone who’s ever shown me kindness when they didn’t have to, through the Internet or otherwise.

Everyone has someone whom they know, in whose memory they are their best selves — cancer or no cancer.

And I will create a separate page to link to people who are waging these battles. You can decide whether to help. I’m starting with Lisa and Tricia.  And, though it’s not about cancer — eMOM.

The Internet was about connection long before it was about Friends lists. Or maybe I should say it was about Friends before it was about lists.

But either way, it was always about 1s and 0s adding up to something much bigger.

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18 Comments

Filed under Media Relations, Tech and hype, Uncategorized, Web 2.0

18 responses to “Cancer, Social Media, and the Meaning of Small Things

  1. We’ve come a long way from those chat rooms and bulletin boards, haven’t we?

    The most ironic thing for me having cancer for the third time, is that I never know what to say in those situations to another person but I know that not saying anything is even worse. I’d rather people tell me that they don’t know what to say or do then to just stay silent.

    I’ve found a tremendous amount of support on the Internet and I’ve just started to see how social media can be used for something good. Thanks so much for your support.

  2. alittleclarity

    I’ve learned that, too — that it’s better to say, “I wish I could do more,” than to ignore someone until you’ve figured out the “perfect” thing to say. (Which doesn’t mean that you should be an insensitive idiot, but…). Bottom line is that what people really want to say is, “I wish you weren’t sick,” or “I don’t know what to say,” but that sounds lame, so they end up saying nothing. Which as you say, is worse.

    I wish you weren’t sick.

    You can count on my support. If I can think of something else to do, I will. – Merredith

  3. Beautiful words Merredith. Thanks for an inspirational start to the day and for reminding me that the best writers are extremely generous with their prose.

  4. underheavens

    This was a very good post. I enjoyed it. Made me stop for a moment and think about my parents and my brothers, and that doing such a simple thing as giving them a call, sending them an email with funny pictures or an mp3 that I like, is a very minute thing to do, but again has such an tremendous impact on the one’s that feel “remembered” that it is worth taking a minute break from what you were doing, and just do it.

  5. Wow, that was an impressive piece, Merredith. Thank you. And Tricia thanks you too.

    Your blog post reminds me of something that Jeff Shinabarger said. Jeff is the mind behind the Gift Card Giver charity and was a guest presenter at my church recently.

    Jeff said there was never an idea he had that turned out great by doing it himself. It takes community to make ideas better. According to Jeff’s mentor, community is defined as working together, not being friends on Facebook. By working together, we learn about people, value their talents and our ideas become better.

    I made an mp3 file of his sound bite so you can hear it for yourself at http://toddand.com/blog/audio/community.mp3

  6. So I’m not the only one underwhelmed by the social networks that seem to amount to nothing but the same hoard of people running from place to place, spinning in the wind, yelling “look at me, look at me” and “me too me too” …

    yeah … what if there was something more … what if the network was actually a network of people with hearts who follow/attract people with hearts …

    well, i think you’ve begun your network of hearts by expressing your heart and asking others if they have one.

    as for myself, i have started by being selective in my adds. I am looking for real people having real conversation with other real people. And real conversation also means they know how to listen … and today, as always, real conversation includes acknowledging that they heard.

  7. alittleclarity

    Todd, thanks so much for that mp3 file. I like the idea of community being something “we choose to create.” It’s really true; growing up, I thought that community was something that just sort of happened — the church my parents belonged to, the school I attended… which was true. But while that is still true, it is also a choice. I was jazzed to see Tricia’s blog — I’m glad she’s keeping us all posted, so to speak.

  8. alittleclarity

    MarillaAnne,

    Judging by the blogs I’ve seen, you have lots of company being a bit impatient with social networks.

    I wasn’t actually trying to say that I’d had it with the so-called stars of social media; I think they probably get asked to help people quite a bit, and sorting it all out is exhausting. I actually have some compassion there.

    My point was really, why wait for some other person — celebrity or otherwise — to make a big gesture, when we’ve had for quite a while the tools for small gestures that can make a big difference?

    I have this image of people looking at their social networks, toes tapping, waiting for them to… hatch or something. Which they can — absolutely. But a social network is only as good as the hearts behind it, as you say; so if someone has heart and a blog, or a telephone, or email, or even paper and pencil — then just use whatever tools you have, and let the heart take care of the rest.

    Thanks for reading my blog!

  9. I spend a good portion of my day reading articles online for my job; mostly search marketing and social media nonsense, but I’m also active on Twitter, Facebook and a number of other social networking sites. Keeping up with all of these distractions seems important because it helps me accomplish my goals at the office. But then I come across a blog post like this and I’m suddenly reminded that all the noise and chaos that I take so seriously is in actually just noise and chaos and nothing more.

    I lost my aunt to brain cancer in 2004, the same night I passed my EMT exams. My good friend lost her 12-year-old niece to cancer this time last year. And my ex-wife beat cancer two years ago (we’re still very close). Cancer has hit close to home for me and I’m acutely aware that I could be next.

    My point being that we all need a good kick in the butt sometimes to keep us focused on what is really important in life. This is a post that I will bookmark and refer to on days when I feel overwhelmed with the “noise.” I am also forwarding to my family and friends.

    Thank you, Merredith for taking the time to share your story. Know that it is making a difference! Tonight, I will hug my son a little tighter and be thankful for the time I get to spend with him. I will try not to get frustrated with him when he gets cranky because I know so many people who would give anything to see their children being cranky again. I also know children who could give anything to see their parents get frustrated with them.

    God bless…

  10. pacer521

    Great post, I read it over and over again. I guess cancer is something that does make you hopeless, but there are ways to help.

    As far a social networks, 1995 was the year I was born in, and I am only beginning to truly understand the amazing depth that the internet really has. One of the flaws, though, is that there are people who have nothing to do on facebook and people like you in 1995 who really have a purpose. We need to fix that somehow, and it seems hard to me.

    pacer521
    http://culturedecoded.wordpress.com/

  11. alittleclarity

    Gary,

    I’m so sorry for your losses. When my mom was dying, it was like my heart broke every day — and you’re right, I wish I could have her back again, even frustrated with me.

    I am a little humbled by your comments, even as I realize that once again the Internet is doing exactly what it’s supposed to do.

    I’m hugging my kids a little tighter, too — and thinking of you and yours. — M.

  12. alittleclarity

    Pacer521,
    I went to your blog — and showed my daughter — and we agreed that you give us hope. As for how to fix social media and the world, we just have a sense that you (and people like you) will come up with something; and we’ll help if we can!

  13. This is SO well written and so well thought out. I really appreciate your candor and everything you do and have done. I am going to share your site on my Facebook group ‘Pancreatica Running Team,’ and would like to also share it as far and wide as I can, via my blogs and other websites. Thank you – for sharing, for caring, for being active and for doing the small things. They ARE BIG… you are just awesome!

    With Gratitude!

  14. pacer521

    thanks for the great compliments.

    About fixing social media, it is really hard to understand. As one of the commenters above me said, the internet is doing what it was meant to do. He raises a very good point. After the infamous train robbery (many movies were made of it), the robbers dashed into a crowd of thousands of running soccer fans who were all wearing what the robbers were — a black and white striped shirt. The police were then looking at thousands of identical people, and only five of which were who they were looking for.

    In the same sense, as a thirteen year-old, it is almost impossible to find someone I can relate to on the web that is my age and enjoys the same writing/blogging style as I do, instead of just blabbering garbage on facebook or myspace. But there is someone out there, out of the millions of kids my age. And without the internet, it would be IMPOSSIBLE to find them. With the internet, you could just say it is VERY HARD to find them. So my point is that we need to build off that. Many people won’t admit it, but the internet is still in the stone age.

    Finding MS_Tylee (and not putting you down or anything) was pure luck. And that really sucks. She was probably one of the hundreds in that chat room who actually could help you. And that’s why we need to create an internet chat room where you can find people in terms of an emergency that will really help you. This is totally do-able, but the only obsticle is filtering the people who don’t need to be in this chat room out and the people who do should get in without question so they can get to their problem.

    In the same sense, there should also be a chat room where you can casually meet people your age and talk to them (not talking about relationships here). This could be useful for everything from business meetings to my problem. I could go rambling more about this, but I guess thats not very healthy for this comment section.

    My point here is that the internet is endless, nothing here is impossible. Anything can be created and done. And as all of us are well aware, this is good and bad. The key is creating something else that forces people of all ages to grow up and help other people and get things done. If they don’t want to do that, they can go to facebook and then waist their life away

    pacer521
    http://culturedecoded.wordpress.com

  15. pacer521

    oh yeah and say hi to your daughter, and thanks for visiting my site

    pacer521

  16. Merredith, you’re right. There’s incredible power in the Internet to “do good.”

    Here’s yet another anecdote that proves your point.

    Our neighbor, affectionately called Jetcar Bob because he was one of the pioneers in putting jet engines into cars (actually set a Guiness book of record years ago) was rushed to the hospital with a life-threatning ailment. He fought like hell and made it through a 24-hour cycle.

    And he managed to hang another couple days when we heard from his wife. She felt if Bob could hear from the people who cared about him it could make the difference in his will to fight.

    We did more than leave a message for Bob.

    Thanks to the Internet, we sprung into action researching Bob’s exploits, the drag races he won, who he competed against, his circle of buddies, etc.
    From this research we built a list of people who would know Bob then again turned to the Internet to dig out email addresses and phone numbers. Hey, thank goodness privacy isn’t all it’s cracked up to be.

    We then contacted all of these folks with a simple message: JetCar Bob is in the hospital. If you care about him, email a note to his wife letting him know how you feel.

    The notes poured in, each one read to Bob by his wife.

    Bob recovered which his wife believes can be partly attributed to all the well wishers, some connecting with Bob for the first time in 20 plus years.

    Amazing.

    P.S. It still makes me cranky that Big Daddy Garlits didn’t reach out to Bob. Apparently the bad blood between the two didn’t dissipate over the years.

  17. Pingback: Recent Links Tagged With "cluetrain" - JabberTags

  18. Zoe Lewis

    HI MOMMY. YOU ROCK! Keep writin’!

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