I Love This Place

There’s no place better than the internet to be sick. No, really. The people around here are amazing. I would have had a truly miserable last couple of months without them.

Now, before I go on, let me just note that I might not have survived these months without the help of my husband. But if he doesn’t already know how wonderful he is, I’ve screwed something up badly. This particular post isn’t about him.

It is a bit about my “meatspace” friends, though. It’s about the people I met years ago who have told me my welfare is still important to them. It’s about the ex-boyfriends who have reached out (almost uniformly) behind the scenes to tell me they’re keeping up and hoping things go well. It’s about the people I don’t see nearly often enough who have reminded me that they’re there. Not only if I decide I need them; just there. (And about the ones who say, “Hi. We’re showing up with soup tomorrow afternoon. We can’t stay, but we want to do something.”)

This little internet thing also means that when I do see the people I see regularly, the whole thing doesn’t get derailed by me having to tell them what’s going on. I’ve posted relevant blog updates to Facebook, which means I don’t have to tell the story over and over again each time I run into someone who sincerely wants to know, “How are you?” Even my mother knows she can get all the information she wants and more online. When we talk, we can talk about something else, something that doesn’t involve me being defined by illness.

Speaking of not being defined by illness, this internet thing is great for that too. I haven’t been blogging as much as usual (hanging out inside my head long enough to articulate what I think about a topic hasn’t always been appealing or possible), but I’ve still been able to argue about important things and trivial ones. People have sent me wonderful distractions, things to make me laugh or growl or think, both in response to requests and through the passive magic of Twitter and Facebook, which make healing time vanish (and any other time as well).

Then there are the people I don’t know in meatspace or have met only briefly after getting to know them online. I’ve been the recipient of virtual hugs (none of them the least bit squicky) from a remarkable number of countries. One person offered to travel halfway across the country if she could be useful here. A couple said, “Here’s my phone number if you need to call someone in the night. I probably won’t be asleep.” Others shared their stories so that neither of us would need to be so alone in this.

Jason put out the call to my minions (old joke) and reminded me I haven’t yet run out of SIWOTI to deal with. Mike reminded me I’m needed for other things as well. All my usual bloggy friends have been faithfully sweet. People I’d argued with came out to thank me for arguing with them. Others treated our disagreements as the irrelevancies they are. People who have been reading me but not commenting delurked; people who have never read my words before empathized with a single post. And the admiral won’t let me forget I’m part of the crew, as though I’d want to.

In addition to all the wonderful people, there is also the opportunity that’s been provided to me to turn this mess into something worthwhile, something educational. I haven’t only been writing about this because it’s been difficult to write about anything else. I’ve also been doing it to provide a counter to some of the anti-vaccination hysteria going around.

The vaccine = autism crowd have some heartbreaking stories in their arsenal. While I sympathize with the stories–Autism Spectrum Disorders are not strangers to my family or friends–I also understand that they’re wrong in where they place the blame. I’ve been working for a while to counter these stories with the stories of what happens without vaccination. The big difference right now is that the story is mine.

The other difference is the help I’ve had spreading the story. Greg, as usual, has been amplifying my voice, keeping people up to date on my spotty posting schedule and saying exactly what I needed to hear. PalMD spread the word and added information on the medical aspects, both at Scienceblogs and on Daily Kos. Abbie gave me and others reason to hope that widespread adoption of the vaccines could effectively eradicate the most common cancer-producing strains of the virus. PZ Myers reminded his hordes that there are effective actions to be taken.

And on top of all that, the internet has been a great source of information. Getting good information has required that I be careful about my sources, but it’s been worth it. I was able to go into appointments with a sense of the range of things my doctors might tell me, which helped me remember what I actually was told. I was able to understand the severity of what was going on. I was able to think ahead of time about the decisions I might be asked to make. From beginning (“What’s this CIN 2-3 my doctor’s talking about?”) to end (“Why isn’t Vicodin helping with this awful headache? Oh, it might be causing it.”), I’ve had a much better understanding of where I stood.

All in all, the internet really is a great place to be sick. I wouldn’t want to do it anywhere else.

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8 Responses to “I Love This Place”

  1. November 11th, 2009 at 5:30 pm

    Mike Haubrich says:

    The response of your friends was overwhelming for me to watch and see. Often I had happy tears thinking about how well people respond when asked. Thanks to all who read this and supported our friend Stephanie.

    And for the record, for those of you who don’t know him, her husband is, like, the coolest guy in the world.

  2. November 11th, 2009 at 7:05 pm

    Kelly McCullough says:

    I’m very glad that if you had to be sick it happened with the internet there as conduit and scaffolding for support structures. And as always, should you need us…

  3. November 11th, 2009 at 9:53 pm

    Scott says:

    Glad to hear recovery is going well. Human interaction remains a fascinating thing.

  4. November 11th, 2009 at 10:25 pm

    Jason Thibeault says:

    Yeah… should you need us…

    :D

  5. November 12th, 2009 at 9:44 am

    Scicurious says:

    “Yeah… should you need us…”

    CUE MUPPET DANCE PARTY!!!!!!

  6. November 12th, 2009 at 1:47 pm

    Stephanie Zvan says:

    There’s a fair chance there will be muppet ballet this weekend, without me even asking for it.

  7. November 13th, 2009 at 9:19 pm

    khan says:

    Good to know you’re coming around. I never know what to say. The internet is a wonderful thing indeed.

  8. November 14th, 2009 at 7:32 am

    Steph's mom says:

    Mike, I too get teary-eyed watching the volume of response in the blogs. Good to know somebody else does.

    You’re right, Steph. This is a great source of info for a sometimes clueless mother. And Ben is the coolest son-in-law in the world. I only wish there were more like him a generation older, but it’s a great comfort to me to watch you two together, especially after my own marriage disaster. (He is the only person who has gotten me laughing hard enough for tears to run down my face, and all with a silly laser pointer in a restaurant.) I truly don’t mind that you are smarter than me, that way. On vaccinations, your niece’s mom has been inspired to follow through on getting your niece her full set of HPV vaccinations – and we all know how difficult follow-through is for her.

    As for our next conversation, what time is Turkey Day dinner, and I presume you want me to bring stuffing again?

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