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.
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.”
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.”
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.
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.
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.”
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
Wally’s Rowena Tour