Social media?

A woman in Portland, Oregon, has shut herself off from society in an attempt to show whether online interaction is a satisfactory subsitute for in-person interaction.  Newspaper to New Media characterizes it as a sort of experiment, stating that she aims “to learn how technology walls people off even while connecting them.”  Her site itself explains it as not an experiment, but as a kind of performance art, and her living quarters, showcased on a city street, are a companion piece. 

If it’s art, I’m not the judge (the only significant art I own consists of a handpainted pig on the wall and my children’s crayon drawings covering my office door like wallpaper).

But as experiment, I have a few things to say about this.  It offends me not as a scientist (as a scientist, I love seeing nonscientists try changing the variables to see what happens – the basis of some of the greatest experiments), but it offends me as a cancer patient.  Unless handled carefully, work like this belittles the vast experience that people who live this every day have.  That people who suffer from depression, agoraphobia, isolation, disesase, or compromised immune systems live with every day. 

There are many people for whom social media is not just a fun distraction on the commute home or between meetings, but for whom social media is a lifeline. . . their only interaction with the outside world, and one that is vital to keeping their own sanity.

I ranted in a blog comment:

How privileged, do be able to do this as an experiment.  Why not just ask those of us who have to live this, or a form of this everyday?  I’ll give you a hint: many cancer patients in treatment, with compromised immune systems, are largely confined indoors when treatment season (4-6 months) conflicts with flu season. Many of us have found solace, and friendship, and a way to keep up with our lives through social media.  I know I have.

I have, and I’ve written about the way that blogging is my window to the world, both as a mother of very young children needing frequent naps (remember those? as many as five a day for the littlest ones?) and then as a woman in chemotherapy, with an immune system not strong enough to fight off flu season, as in 2007.  My immune system is strong as I fight cancer this time (I have the white blood cell counts to prove it!), but it does take me longer to shake off infections; I’ve been down for a week with the latest preschool virus.

Which makes the count nearly 3 weeks that one or the other of us has had a fever and such, precluding playdates and coffees, and Mommy’s too tired for any activity after noon, so it’s been pretty quiet around here.

Very quiet.

Is online interaction a satisfactory subsitute for in-person interaction?  No.  Hell, no.  But some days, it’s the best you’re gonna get, and for that, I am grateful.

Know someone who is isolated from the world because of a new baby, an ailing family member, or the simple ravages of old age?  You CAN help make it better for them, not by “like”ing something on Facebook or RT’ing it on twitter – but with a simple phone call.  Go ahead.  Use those minutes on your cell phone this month.  Call Grandma or that nice old lady from the church who smells like peppermints.  Ask that shy mom with two kids under 3 to coffee at the park — or ask if you can bring her a treat from Starbucks.  Spend your facebook time today on the phone instead, or dropping by a friend’s house (after calling!), talking and connecting with someone who may not have any other contact with the outside world.  Do your own experiment, and find out whether that makes you feel better than another round of Words With Friends or bringing someone an item for their Facebook Farm.  And come back and let me know.  Maybe I’m wrong in the post above.  Maybe this is a good social media experiment in the reverse — and maybe, just maybe, your particpation could make someone happy.

…

Happy Thanksgiving, my American friends, and Happy Day-That-We’re-Alive to all of the rest of you around the world.  This year, as I have every year since 2006, I give thanks for not the institution of social media, but the friends that it has brought me and allowed me to keep through the isolation of early motherhood and severe illness.  You are so important in my life, and in the lives of so very many others. 

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The facebook purse game

I wrote a letter to Salon today. 

I was going to run it here, with expanded explanation and links, but I’m sick from the chemo tonight and need to lie down again before I vomit.  So here it is, along with suggested links for awareness, action, and where to donate.

Turning awareness to action

There are as many ways to fight cancer as there are types of cancer. You know that. You’ve already been touched by cancer, and your sharp, sharp memories are in many cases what moved over 35,000 of you to read, and 350 of you to comment on my last post. Your words are powerful. As I read the comments, I felt your pain, your frustration, and your triumph in overcoming the wounds left by this beast.

You spoke up, and said YES, I felt this way too. You spoke out and said NO, I loved someone with cancer, and she would have thought this fun. You told us YES, BUT I checked myself for breast cancer.  Awesome. But there was one more comment that was left over and over again:

What action do you propose? I would love to be action and not awareness oriented, but I don’t know how to do that aside from walks and fund-raising. (ShannonP)

Walks and fundraising are fantastic, Shannon.  They’re a wonderful way to show support and raise money to fund tests, provide treatment, and find a cure.  But there were so many other ideas in the comments yesterday — actions that I need to remember too are important, and to do more often.

I challenge everyone reading this today to try one or more of these ideas that readers left.  Comment today, telling us which idea appeals to you, and if you can, please come back and comment again, telling us what you did.

1. Donate. It doesn’t have to be about breast cancer. Donate to your favorite cancer-fighting organization. I like the American Cancer Society and the Inflammatory Breast Cancer Research Foundation, because they work to raise awareness AND fund research to find what causes cancer.

2. Educate. Take a moment and share what you’ve learned.  Call a friend and ask if she’s done her monthly self-exam.  Blog about cancer, and what action you’ll be taking to honor those who we have lost (Oh, Andrea, Lisa, Jenni, Katie, Ursell, and Sue… I miss you and I wish you were here to help).  Write a letter to the editor about the kind of cancer that moves you, and what you thought of the meme.  Post something on your FB page that does raise awareness.  You know your friends.  You know what that might be.

3. Advocate.  If you’ve ever said, “Congress should do something!” you can convince them to do it.  Join the Cancer Action Network for up-to-date information on what bills are pending in the U.S., and how you can take action.

4. Volunteer. Join the Avon Army of Women fighting breast cancer by participating in studies as simple as a questionnaire… and critical in determining the big questions, like who gets breast cancer, and what treatments should be standard.

That’s it.  Donate. Educate. Advocate. Volunteer.  Pick one or all, and I’ll meet you back here to hear what you’ve done to fight cancer.

Which one are you going to try?  Which one have you done lately?

In the name of awareness

If you’re on Facebook, you’ve seen the meme going around the past couple of days.  Women the world over are posting colors to their status updates.  Lots of black, some pink, some white, a virtual rainbow.  It’s a game that several of my circles (high school, local friends, blogging friends) are playing right now, and it looked cute if harmless.  I wanted to play.

I tracked the game back a couple hours and figured it out — they were writing their bra colors!  I put hands to keyboard and wrote … nothing.  Truth is, I didn’t know what to write.  I wanted to frivilously play along — the boys had gone to bed, and this was MY time, after all — but I couldn’t.  And why couldn’t I?  If you know me, you don’t have to ask.  But if you’re new here, I couldn’t play along by posting the color of my bra because I don’t have one.  I don’t own one.

Two years ago this month, I underwent surgery, you see.  I had a double mastectomy to remove the cancer that was trying to kill me.  In my right breast, Stage III inflammatory breast cancer, a fast-moving, deadly cancer that kills more than 60% of women in the first five years. (Statistics have improved somewhat since my diagnosis, but it’s still the second-deadliest cancer, second only to prostate cancer.) In my left breast, potential.  Potential that the same cancer would recur, as it was in my lymph system, coursing through my body, even as we tried to kill it with six months of tri-weekly, then weekly chemotherapy.

We had been through hell.  First the cancer, then the chemo tried to kill me, and both of them almost succeeded.  I was in bed for months, too tired to move.  I couldn’t leave the house for fear of infection during flu season — and we had to take my oldest out of preschool, to keep those germs at bay.  At one point, the taxol had ravaged my nervous system so much that I lost the use of my legs.

After all that, we had to wait for my body to rally after the last chemotherapy treatment and become strong enough to survive the surgery.  As each day went by, I would grow stronger — but so would the cancer.  and if it grew faster than my white blood cells rebounded, then the surgery might not happen, and the tumor would be inoperable again.

It was terrible.

But eventually the day came, January 23, 2007, and I was able to have my breasts removed.  I’ve never felt so relieved in all my life.  This was my one big shot at getting rid of (most of) the cancer in my body, and starting life anew.  This was it.  This HAD to work.

And it did.  I made it through surgery just fine (twittering when I woke up, and blogging about it the same day).  I went through the gory aftermath of breast removal, and the difficulty of explaining it to my children.  We found out that the second breast was not innocent at all, but fostering its own little type of cancer, Paget’s disease.  If I had not removed it preventatively, I could have been back in chemo within the year — if it were found in time.

So I have some history here.

But I tried to shrug it off and play along.  I wrote “None — In fact, I don’t even OWN one! :-)” and watched my friends play along in their own way, hoping I didn’t make anyone uncomfortable.

But what I saw was nothing short of amazing.  I’d forgotten for an instant that this wasn’t about my story.  This was about our story, and the Mothers With Cancer were coming out to play too.  Here’s what they wrote:

“Nude.”

“Nothing.”

“White, with pockets.”

And then, in the comments, some amazing things began to happen.  Their friends came out to support them, cheering them on.  Friends engaged me on FB and twitter too, talking about it, asking why I felt left out, and letting me know that the whole meme was staged by some women in the midwest urging awareness of breast cancer.

Really?

Awareness?

Aren’t we aware by now, people?  Don’t we know that we need to understand our own bodies, take notice of changes in one breast but not the other, and call the doctor when we see that something’s changed?  Don’t we know that we need to talk to our doctor about thermography or mammograms?  Don’t we know?

As I talked to friends on twitter about it last night, a single message came through from my friend and fellow survivor @stales.  She said something that struck me to the core.  She wrote to all: “Time for a little less “awareness” and a whole lot of “action”: the time to act is now: address the causes!”  She’s smart, that @stales.

Other cancer survivors joined in, telling me that they felt left out too.  After all, this was ostensibly an effort to raise awareness of breast cancer — but one in which breast cancer survivors themselves could not participate, and were reminded (as if we needed a reminder) that we didn’t need bras anymore, that most basic undergarment of women everywhere, that symbol of sexuality, for the simple reason that we had already sacrificed our breasts in a hail mary attempt to keep the rest of our bodies from dying of cancer.

That’s what it is, you know.  It’s not a choice.  It’s not just another treatment option.  Women have mastectomies, double mastectomies, reconstruction (or not) because we have no other choice remaining that will give us a shot at life — life with our children, our partners, our families, and our friends.  And so we tearfully bid our breasts goodbye.  We submit to surgery, weeks of the aftermath, drains and gashes where our breasts once were.  We submit to doctors and nurses and students gawking with surprise when we disrobe for exams (not the oncologists, of course, but we still need regular checkups like everyone else, you know).  We submit to months of physical therapy to rip the scar tissue off the muscles that stretch to cover our ribcage.  We submit to lymphedema therapy, taking up precious time, time that we fought for, time that we sacrificed for, but time that nonetheless much be used for even more medical treatment, to deal with the aftermath.

And then we go shopping.

Clothes that fit just a few months previously don’t fit anymore, you see.  Every. single. shirt. is stretched out over the chest, and most new ones don’t fit right either.  Princess seams, sewn to flatter the big-busted and small-busted alike only serve to remind us, the no-busted, that we are no longer princesses.  V-necks are flattering, but only if they are not too deep, cut to show no cleavage, as our cleavage has been taken from us as well.

And, for a while, the reminders are everywhere.  Every TV commercial with the Victoria’s Secret angels rankles.  Every low-cut shirt sparks the tears.  Every nightgown cut to flatter falls — flat — and we cry into our pillow.

We are aware, you see.  We are all too aware, and we work to escape the reminders.  Our friends dance around us for a while.  They don’t invite us to the pool (have you ever gone swimsuit shopping without your breasts?).  They are gentle, and careful, and form a wall of support around you.

But eventually, life moves on, and the wounds scab over, and the scars begin to form.

Until one day, one day, when a harmless meme rips them off, and you realize once again that you will never be the same.

Edited to add:  Well, this struck a nerve.  Over 35,000 people have read this post, and many have written in asking what action they can take.  Here are some ideas.