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
As a compulsively addicted, forever-at-it, passionate writer, I’ve been trying to find sneaky, subtle ways of encouraging my kids’ with their writing without getting sprung.
As any parent will agree, as soon as you show more than observational interest in any of your child’s activities, it puts on the kibosh on them. You are the kiss of death and the worst thing any outsider could possibly ever say to your child, no matter how well intentioned their motivational efforts might be, is: “You’re just like your Mum/Dad” or even worse still “Ah! A chip off the old block!!” When I was a kid, those sort of comments were “stick-your-finger-down-your-throat-type” revolting and a instant death knoll to any kind of interest. RIP!
At the same time, I still want to do some writing with them and somehow pass on something of my box of magic tricks…even if it’s only enough to enable them to be competent writers and express themselves enough to cover school requirements. That in itself is a challenge anyway.
That said, if they were to show any interest at all in writing well…Yes, I’d still probably have to keep myself in check because, as I said, a bit too much parental encouragement can be a very damaging thing. We all need to wait for the butterfly to make it’s own way out of the chrysalis or it will never be able to fly.
Reading their eclectic writing efforts, I definitely felt I could help them but the real trick was HOW. I didn’t want to go on the rampage with the notorious red pen and turn them off writing for life but at the same time, I appreciated that I know a few tips or short cuts. I mean as much as I agree with Lennon’s quote, sometimes you you just want to cut to the chase and get to your destination without any hassles or impediments. There’s a lot to be said for taking the easy way out or what’s known as “The K.I.S.S. Principle”: Keep It Simple, Stupid!
I don’t know if you remember back to your primary school compositions or creative writing exercises but my Mum taught me how to spell enthusiastic when I was 11 and I soon found that when enthusiastic ended up in my compositions, there was that illustrious red tick and a VG (very good) in the margin and I was smiling like the proverbial Cheshire Cat. While too many big words wasn’t the way to go, judicious use definitely paid off. By the way, my Mum also gave me a Roget’s Thesaurus at the time and I soaked that up like a sponge. As you can see, I was a bit of a writing nerd even then. To make matters worse, I was also accused of reading the dictionary in high school but I still deny it.
As I said, I’ve been fumbling around trying to find some simple things I could do with the kids to nurture their writing and help them get ahead. Then, last week, I attended a meet and greet at the school and walked away with a very simple sheet about how to build a super sentence, which was fabulous. This also included working on similies, which can be a little tricky at first.
We started off with a simple sentence:
Yesterday, Bilbo had a haircut.
By asking who, when, what, how why, where and including a simile, our simple sentence expanded into:
“While most people receive scrumptious chocolates and stunning red roses for Valentine’s Day, Bilbo, our woolly Border Collie, received a free haircut and is now almost as bald as badger”.
I wrote most of this as an example.
So my ever-inquisitive daughter asks what a badger looks like and we jump straight to Google Images and she promptly tells me that a badger isn’t bald and is actually rather furry. Of course, this launches a new line of inquiry which has absolutely nothing to do with writing super sentences and I’m starting to suspect that my daughter’s taking me on another one of her circuitous goat’s trails. Yet, who ever said you had to stick to the narrow path to gain an education?
It turned out that the expression “as bald as a badger” comes from Victorian times when the original expression was: “as bald as a badger’s backside”. Badger’s hair was used to make men’s shaving brushes. Brush makers would trap badgers and take the hair from their derrieres and then set them free. Eventually the hair grew back however it wasn’t uncommon in England’s Victorian past to see badgers with bald backsides.
Quite an interesting bit of trivia really!
Well, as interesting as this explanation might have been, it didn’t have much application to a modern kid whose Dad uses an electric shaver or in the case of my husband…an electric beard trimmer. Although my husband has a very full head of hair, for many kids whose fathers shave off their receding locks rather than going for the finesse of the comb-over, a more appropriate simile would be:
“as bald as my Dad.”
So my daughter who is the master of asking tricky questions and really putting me on the spot suggests her own take on this simile. A simile which the rest of the world has left alone for at least 100 years. Her version of the simile was:
“as bald as a blobfish”.
At that point, my ire was raised and I was getting really stroppy…especially after trying to build a super sentence out of: “I am awesome”.
BLOBFISH????? WHAT THE???
Just when steam was starting stream out of both ears and I was definitely losing my cool, she looks up Blobfish on Google Images. My goodness!! It actually exists and it is as bald as a badger. While you can research the Blobfish yourself if you’re interested, it’s main claim to fame is being awarded the title: World’s Ugliest Animal in 2013. While it certainly looks odd, I wouldn’t call it ugly. It’s a bald, blobby, gelatinous thing which actually looks kind of cute in an alternative, dare I say “different” kind of way. It could even look a bit contemplative or spiritual. That said, it also reminds me of a lot of blokes you see walking around with bald heads.
“Life is what happens while you are busy making other plans”.
Yes, while the rest of the world might despise the Blobfish and think it’s ugly, we love it. Cherish it. Indeed, I am in the process of ordering a toy version for my daughter’s birthday. After that priceless conversation, we had to had to immortalise the moment! I just haven’t quite worked out where to store the moment because it is on the large side and her room is already bursting at the seams.
After processing all of that, “bald as a blobfish” is starting to appeal and dare I say that it even exceeds all my wildest creative dreams for my child. Why should she settle for a comparison which no longer makes sense when our dog could be as “bald as a blobfish” instead?
It seems that my wish has been granted after all and I’ll take the blobfish over a badger any day!!
“Two roads diverged in a wood, and I—
I took the one less traveled by,