Quirky’s Quest for Connection.

I don’t know if anyone feels truly connected…as snug as a bug in a rug within the community blanket. As much as I would love to, sometimes even I find myself standing back quite content to watch from the sidelines lest I am somehow consumed or engulfed by the need or pressure to conform. After all, some of us don’t play by the rules and while this can be problematic, it can also be much of our appeal. After all, you can get a bit bored or sick of the same old same old.

Not all of us were designed to conform and toe the line.

Not all of us were designed to conform and toe the line.

Yet, being an extroverted social butterfly, I can’t help myself. As much as I might withdraw to write, I am soon back out into the social throng.

“The way a team plays as a whole determines its success. You may have the greatest bunch of individual stars in the world, but if they don’t play together, the club won’t be worth a dime.”

-Babe Ruth

That said, at times, connecting has been very difficult fore me due to my ongoing health issues. Having any kind of disability or chronic illness, can make it difficult to access certain places and events. It can make long excursions out of the house difficult. Moreover, when you are unstable on your feet and unwell and trying to communicate that with friends and loved ones when you appear perfectly fine, it is easy to start feeling disconnected. That you don’t belong. You can feel like crawling deep inside your “shell”, your “cave” and not coming out.

This is why I truly value and appreciate blogging because it somehow seems to bring together and unite all sorts of people…just like hundreds and thousands…into an online world which has quite different criterion for belonging. Yes, we too have our benchmarks and expectations but as long as you can write and read other blogs, you’ll fit in fine. Oh yes! You also need to have something to write about so you do need to be at least somewhat interesting or have some interesting stuff around you…or a good imagination! At least, in my experience people aren’t judging you by how you look. What you wear, age or other more superficial benchmarks. They are meeting you. Perhaps not all of you and I know that even though I probably come across as an open book, what you see here really is a thin edge of the wedge. After all, this is my blog not my journal and my husband and kids need to be respected.

In addition to blogging, I also stay connected with people who share my condition through an online Facebook community. I have never met most of these people in person and would only pop in on average about once a month but I do know they’re there and I have become personal Facebook friends with a few people from the forum who I’ve come to consider friends.

“Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.”

-Marcus Aurelius

Our community faces some difficult challenges when it comes to staying connected. We all live with an auto-immune disease which falls under the umbrella of “myositis” and I have dermatomyositis. The incidence of myositis is rare at about 1 in 100,000 and living in Australia, I’m not swamped with “colleagues” and we’re geographically scattered and often immobile. This makes online forums an excellent way of becoming connected. Although being small in number, our group has been very keen to get the word out to promote Myositis in the community and to connect.

With this in mind, Wally Wombat was somehow conceived in the UK and came out to Australia via continental Europe to raise awareness. Wally is a small, blue stuffed toy wombat with a Union Jack around his neck and he has a red rose..a tribute to the girlfriend he left back in the UK.

Miss enjoying Easter breakfast with Wally.

Miss enjoying Easter breakfast with Wally.

Wally has been living with our family and I’ve taken him on quite a tour explaining who he is as we’ve moved around. Most people who know me know I have “something” but trying to expect anyone to remember the name “dermatomyositis” let alone what it’s about is a tall order. I know I’m very much speaking another language.

Wally had a close encounter with Lady.

Wally had a close encounter with Lady.

However, Wally opened many doors for me to share a quick blurb about myositis. Unfortunately, this probably isn’t going to put Myositis on the front page any time soon but perhaps it’s left an impression…an understanding or at the very least an appreciation of what it’s like to live with a rare condition…a “What????”

“Alone we can do so little; together we can do so much.”

-Helen Keller

I have written about Wally’s trip to the Sydney Opera House in more detail here: https://beyondtheflow.wordpress.com/2015/05/12/sydney-opera-house-new-perspectives/ So here are a few photos of Wally’s Rowena Tour and I’ll be giving you a spelling test at the end. That’s right! How do you spell dermatomyositis???!!

This post was written as part of 1000 Voices for Compassion, founded by Yvonne Spence and Lizzi Rogers. This month’s topic was “connection”. To read this month’s contributions click here for the link-up:http://new.inlinkz.com/view.php?id=527278

xx Rowena

Wally’s Rowena Tour

Wally seeking wisdom from an Aboriginal elder at Whale Beach.

Wally seeking wisdom from an Aboriginal elder at Whale Beach.

Wally sought help from the Force and consulted Yoda.

Wally sought help from the Force and consulted Yoda.

Wally was glad he wasn't a dog and did wonder about the scorch marks on the sign.

Wally was glad he wasn’t a dog and did wonder about the scorch marks on the sign.

Wally pictured with Alf from Homer & Away.

Wally pictured with Alf from Homer & Away.

Wally in Summer Bay, where Home & Away is filmed.

Wally in Summer Bay, where Home & Away is filmed.

Wally climbing the Opera House.

Wally climbing the Opera House.

Wally & I with the Sydney Harbour Bridge. Taken beside the Sydney Opera House.

Wally & I with the Sydney Harbour Bridge. Taken beside the Sydney Opera House.

Wally at the Lindeman's Estate in the Hunter Valley.

Wally at the Lindeman’s Estate in the Hunter Valley.

Wally flew in on a cup and saucer.

Wally flew in on a cup and saucer.

Wally catching the boat.

Wally catching the boat.

Wally was picked up by a magic carpet and has moved onto his next destination. He has been connecting people with myositis from all around the world together.

Wally was picked up by a magic carpet and has moved onto his next destination. He has been connecting people with myositis from all around the world together.

11 thoughts on “Quirky’s Quest for Connection.

  1. TanGental

    I think you have hit the nail, Rowena; being connected on line is a marvellous addition to the world of the small: groups, minorities, ideas, entrepreneurs. It’s allowed the likes of you and your fellow sufferers (is that the correct term?) to interact without the mediation of a professional and with the ability to ask complex, nuanced questions that a one off conference or book would fail to do. And bon voyage to Wally.

  2. roweeee Post author

    So true. Probably the correct term is something along the lines of “living with”. That’s what we used to refer to people living with HIV/AIDS years ago. I like the concept of “living with” because it means that I am not the disease. I am still myself. It’s sort of moved in and we co-habitate but we’re still individuals. I often talk about it being”my disease” , which I’ve been pulled up on so, as usual, the political correctness is a tough one to stick to and always “get right”.
    I actually ordered us our own Wally on ebay. He really grew on me and I’m a very nostalgic person, in case3 you’d missed the glaringly obvious not! Off to Sydney Writers’ Festival today and the sun is even out…yippee!

  3. TanGental

    You have the best time ever, Rowena! Get that keyboard fizzing! And ‘living with’ does sound right. Thank you. I knew I was being gauche…

  4. Minuscule Moments

    Rowena thank you for sharing Wally and some back ground on what you go through every day. I am thankful we have met. I value the friendships I have made online. Meeting some amazing and inspiring people like you just adds a certain quality to life. Especially since where I live, I do not have a group of passionate writers to hang with. Love all the quotes you shared here too.

  5. roweeee Post author

    Thanks so much, Kath. You are so thoughtful and encouraging. I’m in the same boat as you locally as well although I do have friends in affiliated fields. I also need some very grounded friends who can “take care of this bear” when I’ve over-stimulated the creative side and need to get nback down to earth.

  6. Louise

    I’d certainly agree the Internet has given all sorts of communities and groups in the world an amazing tool for connection – and connecting with people they’d never otherwise have probably found. It is a fabulous way to find communities it just wouldn’t be possible to have found before the Internet.

    I have to ask – where’d Wally go? Do other’s track his adventures when they land there and share back? Does he make it back to the UK to visit his girlfriend? It would be fun to have some Wally updates from time to time! I love the last one with him on a magic carpet – well done!

  7. Frank Smith

    Wally Was conceived by Myself in the UK in 12014 and made his first public appearance on the 4th of October when I took him to a myositis meeting in High Wycombe in the UK where he was handed over to Amber O’Connor a Myositis lady from Australia. from there Wally has travelled across Europe and is now in Australia where he is travelling around staying with various Host families before heading of later this year to travel around the U.S.A and Canada before heading to Scandinavia in late 2016 early 2017 and then back to the UK via Northern Europe. so a long journey ahead of him . He will be joined by his long term Girlfriend Rambling Rose and his Many friends in his upcoming series of book,s and his Animated Videos on you tube, these are now under production with our Myositis graphics studios “Film Scan Studios” Please support and make people aware of Myositis.

  8. Amber O'Connor

    Louise, if you want to read more about Wally and his adventures as an ambassador for Myositis, he has his own Facebook page. You will be able to follow each host and how they make him feel at-home, and what he learns from them plus how he communicates with others to teach them a few pointers about Myositis. We are grateful to have people from all over the world asking to be a host for Wally and as Frank says above, there are further plans for the future in terms of promoting Wally’s profile and that of Myositis. And yes, it was me who began his long journey through ten countries in Europe before bringing him to Australia. Check out his page to see where he is now. Just Google Wandering Wally’s Myositis tour.

  9. roweeee Post author

    Thanks, Louise. I’ve really valued the Internet and especially connecting with such a range of people through my blog. Through writing about my own journey through adversity, I have also been able to reach out and connect with others going through a range of experiences because they know I’ve been there. I still remember how completely isolated I felt when I was first diagnhosed with dermatomyositis and I never want anyone else to go through that hell. I hope they can connect with someone who can at least figuratively hold their hand and try to walk in their shoes.
    Hope things with you are going well. I’ve been redoing my son’s bedroom this week and I trhink you’ll appreciate the post I’m putting up later tonight. Take care xx Rowena
    PS Frank and Amber have pretty much answered your questions about Wally’s adventures.

  10. roweeee Post author

    Hi Frank,
    Thank you for explaining some background to Wally’s travels and for visiting my blog xx Rowena

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