Posts from — December 2009

A post where Melissa gets all nice to doctors…sort of.

This has been on my mind ever since I started using Posterous as an annex space from this blog, instantly uploading pictures, sound files, stories, and videos from my phone. Where I would have had to wait until I returned home from a party or event, hooking my camera up to the computer, downloading and sizing the photos, slowly uploading them individually to my blog, they now are sent instantly and I return home with the whole night already blogged and commented on from people reading at home.

Same goes for using Twitter or Facebook while on the road.  These three pieces of software are but a few of the options out there for creating a lifestream rather than a static blog.

It’s a wonderful and scary new world.

The wonderful part is obvious–thoughts popping up in all corners of the world are accessible and exchanged in real time as events unfold. There is something raw about lifestream writing, unfiltered, unedited.

The scary part takes into consideration a larger picture. Whereas Tweets disappear into the ether and do not show up in a Google search (Twitter does have its own search engine) and Facebook status updates are somewhat protected, sites such as Posterous are not only open to the public unless set otherwise, but these posts are Googleable in the days, months, and years to come. They operate in the same way as a blog, but provide the immediacy of Twitter.

Therefore, when the circumspection afforded by the drive home to get to the computer or the emotional cooling off time after something hurtful has been said now ceases to exist, there is room for regret both on the part of the writer and the object of their wrath.

Doctors, nurses, clinics, and agencies have plenty to fear from the power that live-blogging affords. The online world has become the equivalent of the backyard fence, with bloggers constantly exchanging advice and opinions with one another. It can be a frightening thought in a consumer-driven area of medicine such as fertility treatments or in the area of adoption agencies (not to mention donor gamete or surrogacy agencies), knowing that the information once contained between two people at the backyard fence is now accessible to anyone Googling for information before making a decision about a doctor or agency.  And they are receiving that opinion out of context, without knowing anything about the speaker other than what is shared online. Get enough angry patients stating their thoughts online and the reputation of a clinic or agency can be sullied for future patients.

This, of course, has been true for years with the advent of blogging, but it is the immediacy of sites such as Posterous coupled with the Googleability of those sites that changes the playing field. Prior to this point, if a patient had a bad interaction with a doctor or nurse, that information was tempered with the time it took to get from the clinic to the computer. In that time period, the person may have the emotional clouds part to examine how their actions can affect another person. There are things I’ll consider doing while upset that seem simply hurtful in retrospect when I have time to calm down. Posterous removes the cooling off zone.

And while this may not seem like a problem for patients and therefore none of our concern (after all, it’s hard to feel a lot of empathy when you just ate $10,000 on a failed cycle), it is when you consider it through the lens of HIPAA.  Just as these laws have been set up to protect the privacy of patients, to ensure that doctors are giving the people they care for respect, the impulse needs to flow both ways if patients and doctors want to continue having a respectful relationship.  I am not talking about the micro-level–your relationship to your personal doctor–but an overall climate.  Doctors need to know they can trust patients in order to do their job well.

I think of it in the same way as traffic cameras.  They sound like a good idea in theory–making sure people obey the speed limit–just as stating your opinion online sounds like a good idea in theory–you could protect someone from receiving the same crappy treatment you received.  But the reality of traffic cameras and speed traps is that they cause more traffic accidents because people are focused on not getting a ticket rather than driving well.  Doctors need to focus on practicing medicine and not protecting their reputation.  At least, that’s my feeling.

While the idea of live-blogging pitfalls applies to all health care situations as well as other facets of life including relationships, family interactions, and education, I’ve been looking at it through the lens of infertility since infertility is an emotional disease that thins the skin as time passes in the family-building arena. When emotions are already running high and emotional reserves are depleted, small mistakes can feel huge.

I think there are many things doctors and agencies can preemptively do. A frank discussion can go a long way. Doctors can state their expectations about blogging in regards to patients during the initial interview, explaining why problems with the clinic should be brought to the attention of those able to remedy the situation rather than simply shouting about it on the Internet. Adoption agencies can ask those who are going to blog about their journey to keep their blog set on private.  Just as patients are reminded about HIPAA laws the moment they fill out the paperwork with a new clinic, patients should also be reminded that respect needs to flow both ways.

A way to register a complaint within the clinic (or agency) and have it heard (in other words, follow up given to the patient that shows the clinic is taking the complaint seriously) is key. Doctors should provide a clear-cut way for patients to give the doctor or nurses feedback directly rather than having them turn to the Internet as a way to voice their ire. Provide an email address for someone in charge of patient relations or an online form that patients can fill out after a bad appointment, with the patient understanding that their words are not going to affect their treatment at the clinic (or, in the case of adoption, agency). After getting this information, doctors should follow up with the patient in a timely manner, making sure that as they’re treating the physical side of infertility, they are also doing their part to make the emotional side easier.

Doctors and agencies finding poor reviews of their service online shouldn’t write off the words as simply angry spoutings from a thin-skinned patient. Instead, use that information to make tweaks in service and address concerns not with the patient directly (which doesn’t allow both parties to save face and feel comfortable), but with the clinic as a whole. For example, if a doctor is noticing that people are consistently blogging about the long wait between blood draws and result calls, shift the system so that expectations are set concretely (for example, “we will only call after two o’clock and will call before five o’clock”) and move bad news phone calls to earlier in the day before the good news or maintenance calls go out (hint: no one complains when they get a call however late with a positive beta).

What responsibilities do patients have to doctors with this powerful medium in place? How can doctors best address blogging and lifestream writing with patients? And what other ways do you think clinics and agencies can show patients respect and help defuse tension before it hits the Web by making tweaks to their clinic protocols and procedures?

I know some people have been confronted about blogging by your doctor.  Have others ever had expectations set by their RE or an adoption agency?  How did they do it?  If you were upset with your clinic, would you pause before you blogged or would you say fuck the clinic for ruining your day?

Somewhat cross-posted with BlogHer

PSA #1

If you write a password-protected or invite-only blog, please, please, please send out a mass email every time you update.  I know it sounds counter-intuitive: people don’t like to receive tons of mass emails, but password-protected blogs and invite-only cannot easily be added to a reader such as Bloglines or Google Reader.  Which means that people need to remember to check your blog daily.  Which means that more often than not, they forget.  Please, I’m giving you formal permission to send out emails–at least to me.

Send out an initial email to everyone who has an invite or the password.  Add the addresses via the BCC function of your email provider so no one can see the other emails (for privacy) and place your own email address in the “To” line.  Give them a heads up that a new post has gone up AND LINK TO THE NEW POST OR THE MAIN URL OF YOUR BLOG.  Please, please, please include a link.  If you want to go a step further, you can include the password again at the bottom of each email (if you have a password protected blog).  And then add a note stating that if the person wishes to be removed from this list, email you back and let you know.  Keep the list current removing those who wish to be off and adding on people you give an invite or the password.

And send an email like this every time a post goes up.  I promise, the ones that come directly into my inbox are treated just like a post in Google Reader.  In fact, they may even be read faster than those in Google Reader.

Just a friendly, blogging PSA, because currently, I keep clicking on blogs that haven’t updated and forget to click on others.

PSA #2

If you have a blog with Blogger, please check your profile.  It should include a link to your blog either in the space where you can list your blogs with Blogger or under the “my webpage” feature.  It should also contain an email address so that someone can hit reply to your comment and reach you.  The only reason not to include these things is if you don’t wish to be contacted or have people return to your blog.  If that’s the case, put that statement in your profile so when people click over, they understand immediately.

If you don’t want to list your main email address, create a secondary one with gmail that forwards to your primary one so you know when you have a message and can check that secondary email account.

I say both these PSAs out of blogging love.  Because we want to be able to read your posts and email you.  This is tough love–for your own good.

Should a PSA #3 be in the works?  I’m trying to think of other things I’ve noticed this week.  Feel free to add your own.

This is what someone needs to create: an image generator where the person can describe the image in bits and pieces to the computer program and it can sketch out the idea.  Wouldn’t that be an amazing program?  Doesn’t anyone want to get on making that?

I am deep in the idea of the next blog performance piece.  Allison has agreed to do the coding and I need to thank her publicly again.  First and foremost, she does amazing work.  She can take my dafook directions and fill in all the gaps of thought and pull together something amazing like the door project with me.  Her design site isn’t up and running yet, but you can contact her via her blog if you want her to do freelance work for your site.  Believe me, it is so much easier to turn over the work to the professionals than to bang your head against the table.

She is also building the image from bits and pieces and once that’s done…oooooh, this is going to be fun and interesting and emotional.

Can you tell that I’m super excited about it?

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I think I’ll spread out the explanations from the rooms of our house.  First and foremost, the door comes from a random neighbourhood in Dublin.  On one trip to Ireland, there was a transportation strike, so we had to walk through the whole city.  I ended up taking a lot of pictures of doors, as is the popular touristy thing to do, springing forth many door posters that hang in American university dorms.

Every time I crept up to a house to snap a picture, I half expected the door to swing open and have someone ask what the fuck I was doing.

So I’d just like to thank the owner of this house, a purple-doored brownstone close to the Jewseum.

So let’s start with room one.  We were all sitting in the car, waiting to meet up with my mum so Josh and I could celebrate our anniversary.  The Wolvog wanted a Lego robot and I agreed to buy it for him until I saw how much it cost and the age level for the toy.  The end of that portion of the story is that we built our own robot, one who currently resides in our kitchen and can actually move around the room by remote control.

Robot-T, also sometimes called Beatle (which is also the nickname for Simon Liverspot, our pet squirrel).  He is constructed out of two shoe boxes and a cough suppressant box all covered in aluminum foil.

As he was whining about his robot, I took out a recorder and told everyone in the car they could ask one question.  I’m not sure why I was going to bring up the robot for mine because that was simply poking the bear; especially after the Wolvog didn’t make it his question.  But Josh beat me to the punch.

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The Weekly What If: what if you could master a new skill with one hour of work (this is a magical pocket of time where you could fit four years of medical school into that hour or become a skilled musician or learn how to figure skate–all you’d need to expend is one hour of time and you’d have a mastery of the information)?  What would you choose to learn?  Would you change careers with your new-found knowledge, or would life continue on as is with simply a new skill in your back pocket?

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Not that you don’t have plenty of time to get on the Creme de la Creme list (after all, it doesn’t truly close for good until March 1, 2010), but if you want to be guaranteed that you’ll be on the list when it goes up January 1st, you need to have submitted your choice by December 15th.  Which is a little over a week away.  If you fill out the form after December 15th, you will go up as I keep adding to the list, but you probably won’t be up there when the first wave of people start reading on January 1st.  So if you’ve been dragging your heels on picking a post, I’d get on it this weekend.  If I were you.  I mean, I’ve had my post up there for eeeeeeeeeeeeeeeeeeeooooons.

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And now, the blogs.

Serenity Now has a gorgeous post about what to do with those infertility-induced emotions when you no longer necessarily need them.  She writes: “Infertility has changed me to the core. It’s made me sensitive to other people’s struggles. And it makes me want to take their burden FOR them. Because I KNOW that pain. I know how awful it is.  I can’t.”  It is about knowing how badly the person is feeling, knowing your own impotence to remove that pain, and drowning in those feelings yet again.

Banking on It has a post about Christmas cards.  The desire to not only be able to send out a certain type of card announcing news, but also the desire to be okay sending out one with her husband and dog.  I think it’s an interesting read from the other side–how those cards you’re excited to send out are taken by the receiver.  And how do we temper giving news with the fact that not everyone on your Christmas card list is emotionally in the same place?

Dreaming of Quiet Places has a post about life after divorce.  As she says, despite the fact that there are millions of women out there in the same position, people don’t know how to make small talk with her since they cannot ask about a partner or children.  I think the most amazing part of the post is the admittance of how “the prejudices of the world have been stamped in my brain and have become my own.  Unlearning them will be a big part of becoming comfortable in this new space called my life.”

Communiqué has a post about peeing on sticks.  And I love how she susses out what side of the pee-before-beta line you fall on.  Today is her beta day and I’m sending only good thoughts for a positive.

Lastly, Relaxing Doesn’t Make Babies has a post about pregnancy after a loss.  For me, the middle vignette was the most breathtaking, especially the end twist to the word obvious.  About how she holds back knowing full well the other side.  Except focusing on the middle vignette misses this gorgeous line: “In a way it feels like I’ve just been ghost-pregnant, still waiting for the reality of it to come.”

The roundup to the Roundup: Allison rocks and our next performance blog piece rocks.  What was behind Door #1.  Answer the Weekly What If.  Submit your post to the Creme de la Creme list if you haven’t yet.  And lots of great posts to read.

Show and Tell is wasted on elementary schoolers. Join several dozen bloggers weekly to show off an item, tell a story, and get the attention of the class. In other words, this is Show and Tell 2.0. Everyone is welcome to join, even if you have never posted before and just found out about Show and Tell for the first time today. So yank out a photo of the worst bridesmaid’s dress you ever wore and tell us the story; show off the homemade soup you cooked last night; or tell us all about the scarf you made for your first knitting project. Details on how to participate are located at the bottom of this post.

Let’s begin.

Every winter, I watch two movies: About a Boy and Love, Actually.  They are as close as I get to a Christmas movie (I’ve never even see It’s a Wonderful Life or A Christmas Carol–horror!).  They are not Josh’s favourite movies, therefore, I usually watch them when I know he’ll be working late.

And then it hit me this morning–this would be the first year watching Liam Neeson mourn his fictional wife in the film after he lost his actual wife, Natasha Richardson, this year.  And suddenly, I felt very awkward for some inexplicable reason.

I was complaining to a friend yesterday over coffee about something hurtful that was said to me this week in regards to infertility and pregnancy loss.  “Mel,” my friend said, “the woman was just feeling awkward about her news.  She had to tell you about the latest addition to her bounty of children, and she felt fucking awkward having to say it to you so she got oral diarrhea.”

Which led us into a conversation about a woman who lost her husband and the stupid things people had said to her after the loss due to the speaker’s own discomfort with death.  “But it’s not that hard.  You ask them if they want to talk about the person.  You ask them if you can do specific things for them.  You sit and listen.  You tell them that you’re going to bring over tea and ice cream after the kids have gone to bed and you’re going to hear her memories and look at pictures and help her grieve.  Or if she is the type of person who wants to be left alone, you send a card explaining that there is no expiration date for the shoulder to cry on.”

And yet, here I am, awkwardly shifting from foot to foot in front of the video case, not really sure what to say to Liam Neeson.  To observe that grief on film knowing that he also went through it in real life.  It’s stomach twisting.

It gave me more sympathy for the woman with oral diarrhea.

Off-topic, because I had meant to make my kum-kum my show and tell today for A at Are You Kidding Me who was the recipient of a kum-kum email discussion last night, here it is without further ado.

That is a two-cup pyrex pitcher to give you a sense of size.  It can boil a little under 2 cups of water at a time and then you push a button and the water comes out.

What are you showing today?

Click here or scroll down to the bottom of this post if this is your first time joining along (Important: link to the permalink for the post, not the main url for your blog and use your blog’s name, not your name. Links not going to a Show and Tell post will be deleted). The list is open from now until late Friday night and a new one is posted every week.

I’ll get the heart of the matter out of the way first as long as you promise not to click away to play with the door before you’ve read the rest of this post.

Got that?

If you didn’t get what to do the first time you saw the post, go to the door and click on it.  There are 10 hotspots on the door, linked to different rooms containing stories, sound files, videos, and pictures.  In each room, you are asked to return to the main door post and leave your answer to the question or a statement about what you saw in the main comment box.  The point was to create an additional 11th space that is read out of context.

After I finished the Door Post, I begged Josh to give me feedback on a scale of 1–10 with 10 being “that was really cool!  I fucking loved that and wish I had thought of it!” and 8 being “wow–that was bizarre and interesting and I’m going to be thinking about it for a while” and 6 being “that was neat; on to the next blog post” to 4 being “wow, Mel, certainly seems to have a lot of time on her hands.  I don’t really get the point of this” to 2 being “I clicked away after two seconds and didn’t even try to understand it” to zero being “that was fucking stupid and I want those minutes of my life back.”

Because I truly didn’t know where the project would fall on the continuum.

I mean, I loved the idea and Josh thought it was cool, but couldn’t really answer with a detached grading because he’s not seeing our life out of context like the average blog reader.  Allison who created the front door for me (and she is taking freelance work too and you can contact her via her blog–she is fantastic and can do all sorts of coding and website design.  She’s one of those people who you can say, “I’ve always wanted X on my blog” and she somehow makes it happen) didn’t run screaming from it (but she often humours me because she loves me and gave me a xylophone ringtone on her phone to prove it).  But I didn’t know how everyone else would take it because unlike a regular straightforward blog post or even the online Choose-Your-Own-Adventure, some would immediately understand what to do and others would probably find it frustrating.

My third grade teacher had this rainy day game that I both loved and hated.  She would make everyone close their eyes (and I always followed the rules and didn’t peek because I am a rules follower) and then would place this small figurine somewhere in clear sight within the room.  Everyone needed to walk around looking for it with the idea being that we often miss the things that are clearly in front of us.  If you saw the figurine, you had to keep walking around the room, pretending to look, and count silently to 10.  Then, you were to go to a designated area and sit down on the carpet.  There was always a few kids left milling around while the majority of the class sat on the carpet and I hated when I was one of those kids.  It obviously still bothers me if I can remember this today.  I didn’t want anyone to feel like that 8-year-old Melissa still walking around the classroom while everyone watched her, giggling because they knew the secret and I didn’t.

But if I stated too much, it ruined what I was attempting to do, which I explained here if you hit the doorknob as your first click (I assumed, probably wrongly, that people would try the doorknob first).  It was to give you that sensation of entering a home, knowing that you have permission to be there (perhaps the person gave you a key) but feeling uneasy nonetheless because you just never know what you’re going to find when you’re in someone else’s space.  That weird feeling of seeing life out-of-context and at the same time, finding your own understanding within the other person’s objects.  I love the idea of guessing the story, of moving from room to room uncertain of what you’ll find, and finding commonalities between two homes–yours and mine.  And there’s the part of me, even when I have the key, that makes me wonder if it’s truly okay for me to be inside the space at that given moment.  So I wanted the participant to feel that sense of unsureness as they tried the door.

So it is all about creating that sense of unease and wonder–of exploring a space that is not your own, but contains objects and thoughts easily accessible to any human being.  It is about what makes each house unique and what connects every home in its commonality.

I do love to twist the medium of blogging and whenever I see a way to meld an established art form or community-building event with this new medium of blogging, I grab it and see if it works.  So rather than a numerical rating, which doesn’t really tell me much about if I succeeded in creating any of these sensations, please give me feedback on how you felt (1) finding the door post and figuring out what to do and (2) exploring behind the door.  If it didn’t work for you, if you felt frustrated or upset by it, please let me know that and why.

I plan to do something like this again, though my next idea is farther-reaching and possibly more emotional (for me, for the other IF bloggers participating, and for the viewer) and probably won’t be ready until mid-winter so I have time to tweak it and do it right.

And yes, I also plan to explain the stories behind much of what you were seeing and hearing (my apologies to anyone who couldn’t hear the sound files–I can type up a transcript, but some of the point was hearing things that you can’t immediately understand)–including the day Santa Claus turned into an octopus.

Okay, so now click on the door in various places and come inside to explore.  And when you see the next one–the next performance blog piece, I mean–you’ll know what to do.  And please don’t forget to leave me some feedback so I can make the next one better while remaining true to creating an emotional reaction.  This part is actually very important, though the reason won’t be clear until you see the next performance blog piece.