Saturday 1 January 2011

New Year Thankfulness: Friends From The Ether.

I've never been big on the whole idea of New Year Resolutions, or New Year celebrations for that matter.  Why wait for one day in the year to set about making changes in your life?  Are the other 364 days in the year somehow resolution-challenged?  Why go to the effort to make resolutions that you know you simply wont keep?  Resolutions are about small egocentric goals.  "I will lose 10 kg", "I will join a gym", "I will give up smoking".  Move forward two weeks and you've gained another 2kg, you've already skipped your last three gym sessions and you've decided having only one cigarette with a coffee is enough of a step this year.  What is the point?

Where are the "I will endeavour to make the world a better place for all, one small step at a time" goals?  They seem non-existent these days.  Maybe it's just that I'm getting old and jaded.  Maybe it's my severe case of bah humbug that prevailed over most of December this past year.  Maybe I just need to find my elusive happy place. I think it's a little like Narnia.  Except my wardrobe is shaped a little more like this.

If I am to make a resolution this year (and I can feel every fibre in my body rebelling as I type) it is to make a conscious effort to be thankful. 

Give me an hour of your time and I can list off the load of shiteness that has come my way over the last few years, until you too will wish to weep into your Corn Flakes.

Oh how hath thee crapped on me oh universe, let me count the ways

That's easy.  Finding reasons to be thankful is not.

So today I am starting by saying thank you to all those people who have come into my life over the past four years via this computer screen, most of whom I have never met in the flesh (and could in fact be a greasy middle-aged guy who lives in his mother's basement, collects action figures and can recite the entire works of Shakespeare in Klingon, or Vulcan, depending on his mood) yet make my little world a better place.

Friends from the Lands of Blog.

Blogging has been an unexpected pleasure.  Before I became a blogger myself I thought people who talked about their "internet friends" were sad little people who needed to get a life.  Now I realise how wrong I was.  Friendship comes in many forms and blogging can provide an honesty and openness that you would never find in the real world.  It truly is a community.  You can put yourself out there, warts and all, and find that you are not a complete freak (well, I guess that depends on your definition of 'freak'.  I'm sure there are many who have read my blog who are convinced that I am a complete freak.  But that's okay, and I'm pretty happy to embrace my freakdom at this point).  The world can seem like a lonely place at times, whether you are ill or not.  Blogging is like a life line that wipes away that loneliness and connects you with a whole world full of people and possibilities.

I am always surprised by who reads my ravings.  I can be a little out there at times.  I tell inappropriate and frequently unfunny jokes.  I am yet to have an epiphany or see the light.  My grammar and spelling are consistently appaulling.  Whilst I truly appreciate the love, I have to wonder, why are you reading people?

I can understand why someone else who has Bob, or another illness, may read what I write simply to be reminded that we all go through the same emotions, symptoms, or issues.  Being ill is a lonely business, and often a scary one.  Those who aren't ill can provide much appreciated support, but there is a certain level of understanding that can only be found with someone who is, or has been, in a similar position.  When you are silly enough to pick an obscure disorder, it is even more fantastic to find others who are in the same boat.  Though I do wish we could have picked the boat that sails around the Caribbean, rather the one that floats in the porcelain drain.

But there are also a large number of people who read my blog who don't have Bob or anything even remotely similar.  People whose lives are completely removed from my own small sphere of existence.  People who are truly lovely and provide support or laughs as needed.  People whose own blogs fill me with delight and much needed distraction.  People whose writing fills me with awe, or have me snorting my coffee onto my keyboard.  People who take the time to connect.  People who are genuinely interested. 

There are a small group of bloggers that I would truly class as friends.  Who make me laugh, and cry. Who give support in the good and bad times.  Who simply seem to get it.  That fall into that category of people I'd love to have a margarita with one day, or coffee, or margarita and coffee, really I'm not that picky.  They are not necessarily people you talk to every day or every week, but when you do it's as if you only saw them yesterday and have known them a lifetime.  There are many others that I would love to get to know better.  Most are from completely different backgrounds and countries to myself, but somehow something clicks.  Somehow you make a connection.  There are people out there who are truly lovely.  People who I would never have met if it weren't for the blogosphere, and for that I am thankful.

Friends from the Book of Faces.

When you have a weirdo disorder it's damn hard to find anyone else who has it.  When I was first diagnosed I hadn't even heard of Bob.  Here in Australia there was no support or information.  Then along came Facebook.  I was convinced by a friend (who is no longer in the picture) to get onto FB.  I thought she was nuts, but decided to take the plunge.  Now I can't imagine not being on. FB gets a bad rap at times, much of it deserved.  But when you are bed or couch bound, it can become your link to the outside world.  It has allowed me to meet people from all over the world who have the joy of Bob in their lives.  It has provided resources and a sharing of information that I otherwise would never have found.

When I read through my list of FB friends and their information, on the surface it would seem we would have little in common except for being ill.  We are all from different countries, different religious backgrounds, different careers, family situations etc.  Many who like Twilight (that's just for you Cyndi) or even (shudder) Justin Beiber.  Yet there is an underlying similarity that transcends the differences.  A view of the world and an ability to laugh in the face of unrelenting crap that is more of a bond than any of the other stuff.  A group of people for who there is no sense of TMI.  Where you can comfortably discuss the less glamorous side of illness that would make other people blush, or gag, as the case may be.  Where you can make totally inappropriate jokes about your health  that would have others wondering whether it was time to call the men in white coats, and it's okay.  Some of these wonderful people I have known from the start, some are newer friends, but all make this journey a little bit more bearable and I am thankful that I have found them.

When your body is out of commission and your mind is about all you have left (insert joke about my diminishing brain capacity), the internet provides an outlet and a way of interacting in the world that would otherwise be denied us.  I for one, am grateful for the friendships I have made and the laughs and support I have been given.

Big Love People.  Big Love.

(Next week I get to meet some fellow Bobettes here in fair old Melbourne as we head out for lunch.   Very excited to finally meet face to face).  

The Very Thankful Michelle :)

Groove Armada,My Friend (2001)


  1. Happy New Year to my friend from the "Book of Faces" whose advice I've learned to trust, whose humor keeps me laughing on days that laughter doesn't seem possible, whose blog makes me want to blog more and write better, and who has all around become one of my best "not yet met" friends! HUGS!

  2. happy new year michelle. i cant agree more with your post. its a comfort to read what you write somedays, when im down and feeling wretched you put into words that make me laugh which is no bad thing. keep writing so pleased i found your blog. xxxx

  3. Happy new year to YOU, funny lady. May 2011 be a more healthful and pain free one for you. May Bob eff off to different climes on a long trip and you get some you time.

    As for resolutions, I like to keep mine reasonable, so I have a fair chance of not failing. Things like "I will eat only ONE chocolate bar every day!" and "I will clean SOMETHING, every week." After all "Something" could be me, in the shower, right? And that chocolate bar could be the size of an elephant. Win win.

    Happy new year!

  4. I laughed at the part about thinking that people who say they have friends on-line are just a wee bit sad and lonely!

    I used to think that too. Now I know that friends come in all shapes and sizes and that when you haven't been able to leave your bedroom for 3 weeks having on-line friends is a salvation!

    happy new year ;)

  5. I recite Shakespeare in Na'vi. Geez, Michelle. It's like we don't even know each other any more.

    Happy 2011. Let's kick it's ass.

  6. Tich tor ang tesmu, dearest Michelle! (For non-Vulcan speakers, that is "Live long and prosper"). Is it sad that I did NOT have to look that up, except for spelling purposes (and I spelled it correctly). I am, however, not greasy, nor middle aged (although my body does think that it is), and I don't live in my mother's basement.... I live in her guest-room. :D

    Your blog was one of the first dysautonomia blogs that came across, and thus, it was one of the first times that I read someone writing about experiences and symptoms that only I have had my whole life. Reading your blog was one of the first steps away from feeling so alone, so in the spirit of this post, I just wanted to say "THANK YOU!!!!" Perhaps I have said it before, but I have not said it enough.

    So, I'll live you with this: taH pagh taHbe'. DaH mu'tlheghvam vIqelnIS.

  7. @Erika ... and I'll respond with this:

    taH pagh taHbe'. DaH mu'tlheghvam vIqelnIS.
    quv'a', yabDaq San vaQ cha, pu' je SIQDI'?
    pagh, Seng bIQ'a'Hey SuvmeH nuHmey SuqDI',
    'ej, Suvmo' rInmoHDI'?

    And has Rusty mentioned that our wireless network is called The Borg Collective, our workgroup is The Federation, our computers are variously named: Hal, Battlestar, Gallactica, Firefly, Prometheus, Optimus Prime; and you've already quoted our security password :)

    Mr Grumpy

  8. New Years resolutions! Ha! I finally found one I might keep. This year I am going to stop recycling. Seriously. It's stupid. I am washing out tomato soup cans that will be shipped to the third world, made into cars and then sold back to me at astronomical prices. Not freaking likely. It stops here and it stops now.

    Happy Newest Year


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