Losing home

I am single. I live on my own. I rent.

I have the most beautiful, blessed existence. I adore my family, most especially my nieces and nephews who have all grown up to be remarkable young men and women. I have the most amazing circle of friends a girl could ever ask for. I live in a wonderful community and have a fantastic job in a workplace I love with colleagues I consider friends.

And yet, 4 days after I turned 45, I was suddenly thrown into a circumstance where I felt like a child again. You see, my Mum, my beautiful protector, my kind and hilarious friend, my elderly Mum who more often than not drove me completely crazy, passed away. I don’t think this reality has actually hit me yet, but what has smacked me in the face like a sledgehammer is the fact that I have just lost home.

I am not homeless, but I am struggling with my new understanding of home. For what is home? Is it the town you grew up in? Is it where your family is? The abode you currently live in? Maybe it is all of these things and maybe it is none.

For me, my mum was home. I would ‘go home’ to see mum. ‘Going home’ involved staying at mum’s house. We would make up the guest bed together (because making a bed with two people is so much easier!) and she would make sure I was all looked after. Towels were put out, electric blanket was turned on an hour before bed during winter months. We would have breakfast together; she would always wait for me to get out of bed, even if I slept in a few hours later than her. She would be interested in my latest art project and ask me to show her photos of what I was working on. She would crochet while I lounged about doing not much, the kind of ‘not much’ you can only do in the comfort of your home.

I would show her photos on Facebook; the latest pics of my friends kids, a family wedding and relatives in Holland. I would post photos of her on Facebook: mind you, she always had to fix her hair before taking the photo, approve the photo before posting, and I was absolutely obliged to tell her who had liked the photo and to read her any comments. She loved it.

And now she is gone. And so is my whole concept of home.

I am working hard at rebuilding home. Now home is Glenbrook, the community in which I live. A place where I have wonderful friends; one who I have known for more than 30 years and a good many more who I have known a little less than that. A place where I feel safe. A place which feels a little more familiar every day; where the baristas at my local coffee shop know my order and bins go out on a Sunday night.

But home is also Wagga, where I grew up and where some of my family live, and some of my closest friends in the world live too. Wagga is the place about which I know the old stories, the ‘remember when’s’ and there is no underestimating the absolute strength of memories and stories to bind us to a place.

What home is no longer, is Mum. And that recognition feels like someone just reached into my chest and crushed my windpipe. I find it hard to breathe if I think about it too much, this new normal. And it hurts like hell. I am a little lost, well more than a little if I am honest and the disorientation caused by me trying to readjust is dizzying. I know the waters will calm, I know I will find my way, but for the moment what I would really like is for someone to help me make my bed and wait for me for breakfast. That’s home.

So many clever people

When I was first diagnosed with MS (in November of 2010) I went in with the attitude of ‘information is power’ and I read everything I could get my hands on to learn more about this insidious disease.

Naturally, my ears always pricked up at the mere mention of those two initials, most especially when news reports would declare a ‘breakthrough’. But eventually, as time marched on, to that unending beat that only time knows, I stopped reading and I even stopped listening. It was all getting too much to fit into my brain and the roller coaster of emotions that came with hopes and dashed hopes was just too overwhelming. It sounded (and felt) like a whole lotta empty promises. The eternally hopeful, Miss ‘I’m going to be positive about this’ had turned cynic almost overnight. “Another development”. Whatevs. “Breakthrough in research”. Yup. “On the verge of…”. Heard it all before, sunshine…

And yet, I still knew in the back of my mind that I was the direct beneficiary of countless years of hard work and commitment to finding a solution. At the time of diagnosis, I had just four drug treatments available to me. Now, just eight years later, treatment options are in the teens and they are becoming more and more effective.

Just very recently one of my dearest gal pals sent me a link to an article about one of these breakthroughs. My darling friend prefaced the attachment with a disclaimer: she didn’t know anything about the validity of the article nor the work described therein, but she hoped that it was a link to the answer that I so desperately needed.

And just like that, my dear friend, my trusted confidant of 40 years, flicked a switch in my head.

She had retained the hope that I had discarded.

And so I read the article, and I learned that the researcher involved had been working in the field of neuroscience for like, forever. Her whole working life.

I’m part of a clinical trial at the Brain and Mind Research Institute in Sydney, where young neurologists make me touch my nose and hold my arms out while I walk on my heels. They take blood samples and do eye tests and examine MRIs. And they record every little detail and then they look for clues. This is what they go to work to do.

Some neurologists collect tissue matter, like the brains of people who lived with MS (after they’ve died of course!) and use them to teach up and coming neurologists or scientists or researchers or all three. People donate their brains!! And other people spend the rest of their working life see what that brain can tell us about the disease.

How dare I lose hope when so many very clever people have dedicated their lives to make my life better.

How dare I lose hope when people have the good sense to think ahead and donate their brain (did you actually read that? I said THEIR BRAIN!!) to science for research.

How dare I lose hope when very generous people work tirelessly to raise funds to allow all of this research to continue.

So many clever people, so many generous people spending their whole lives working to make my life better.

And so I hold on to hope, and I truly believe in my heart of hearts that it will all amount to an answer one day. And tonight when I go to bed I will say a prayer of thanks for all the very clever people.

The Cult of Pedagogy (and other terrific podcasts)

I am always a bit incredulous when people tell me they don’t listen to podcasts. I mean, really? Surely there must be something wrong. Mostly people follow up their ‘No, I don’t listen to podcasts’ with either ‘I’ve never got into it’ or ‘I don’t have time’. Neither of these statements make any sense. In the last twelve months I have learnt so much just from listening to podcasts and there is truly something for everybody. Google ‘Podcasts about…’ and then add your interest (sport, education, comedy, history, technology, religion, guinea pigs…) and you will find something. A quick search for ‘Podcasts about Education’ led me to this terrific site listing 30 fantastic education podcasts. Included on the list are greats like The Cult of Pedagogy, where host Jennifer Gonzalez dives into creative teaching strategies, education technology, and education reform. As she puts it, “… if it has something to do with teaching, we’re talking about it.” and TED Talks Daily where you can tune in every weekday for a new episode on anything from Artificial Intelligence to Zoology from the world’s leading thinkers.

Just give it a try. Listen when you would ordinarily listen to music – in the car, out for a walk, just kicking ‘round the house. So for y’all who say you don’t, won’t, have never, will never listen to podcasts, it’s time to shake things up a little and I’m here to help!

Ready, and go!

Revisionist History is probably my favourite podcast ever. The host, Malcolm Gladwell is brilliant. In each episode he revisits and reinterprets something from the past: an event, a person, an idea. Something overlooked. Something misunderstood. Get into the swing of Revisionist History with my favourite three episodes, all from Season 1: Episode 7 “Hallelujah”, Episode 5 “Food Fight” and Episode 3 “The Big Man Can’t Shoot”. And while I say these are my favourite three, all other 27 episodes are also brilliant but these three really struck a chord.

Rough Translation is another amazing podcast especially for someone like me who loves travel, culture, geography… How are the things we’re talking about being talked about somewhere else in the world? Rough Translation has the ability to transport you to far off places. Definitely start with the episode called “Anna in Somalia”. Do that and you’ll be hooked.

An insight into life behind bars, Ear Hustle comes to us from behind the walls of San Quentin prison. The hosts, volunteer Nigel (a female Nigel, who knew?) and Earlonne (an inmate) discuss many different aspects of life in jail. This is one podcast where it helps to listen in order so go back to Episode 1, Season 1 and listen to “Cellies” and continue your Ear Hustle journey from there. Just a warning, there’s no holding back on Ear Hustle and sometimes the conversation is a bit confronting. They talk about EVERY aspect of life behind bars, so if you are squirmish or personal matters make you uncomfortable, then maybe this podcast isn’t for you. But this podcast is really well done, the music from the inmates is amazing and I have found every episode to be completely intriguing.

There’s design in everything around us — we just don’t see 99% of it. 99% Invisible is a podcast about the thought that goes into the things we don’t think about. Episodes such as 322 – The First Straw and 313 – Right to Roam are a great place to start. But my favourite episodes in this podcast are 296 – Bijlmer (City of the Future, Part 1) and 297 – Blood, Sweat and Tears (City of the Future, Part 2) about the Bijlmermeer just outside of Amsterdam. You may know the Bijlmermeer as the place where El Al Flight 1862 crashed into the residential buildings in 1992, killing 43 people. The story about the inception, implementation and eventual redevelopment of the neighbourhood is a far more important aspect of this story.

When you find a good one, limited series podcasts are definitely my favourite. Sometimes they are as short as four or five episodes, other times they can be 12-15 eps. Some cracking limited series podcasts include:

• The Teacher’s Pet
• Intrigue: Murder at the Lucky Holiday Hotel
• Empire on Blood
• Unravel: Blood on the Tracks
• Missing Richard Simmons

And just remember, there are podcasts on pretty much any interest. Looking for something about your work, your hobbies, history, music, art… Get searching! And get listening! What are you waiting for??

Putting down the chalk

Almost 16 years ago I gave up the teaching game. I walked out on a career that I had wanted to take up for as long as I can remember. Teachers throughout my schooling had inspired and encouraged me and I wanted to be just like them. Mrs Halford with the suede boots and yellow hair, Mrs Sweeney, whose husband looked like Magnum PI and Mrs Lupton, who told me that we cried over boys, not Maths, all had an enormous impact on my life’s trajectory. Mr Mulrooney who was maybe the smartest guy I knew, and Mrs Fellows’, a fine teacher who also happened to be my sister, instilled in me a love of Geography, for which I will be forever grateful.

All these amazing people had positively influenced me in some way or another so of course I wanted to join their ranks. And yet, just five and a half years into my teaching career, I’d lost that very same passion and drive and I started looking for something else.

When I stop to reflect on exactly WHY I left teaching, I find it difficult to come up with a definitive answer. I was sometimes a little bored with what I was teaching and hell, if I was bored, what were my students thinking? I was uninspired. There were times I had felt enormously let down by leadership and times when I had felt downtrodden by parent matters. But none of these was a single, driving force. It was a culmination, and I realised I wasn’t doing anyone any favours by staying on; not my colleagues, not my students and certainly not myself.

But here’s the thing: while I left TEACHING, I never left EDUCATION. I went on to work in a university, first in a Marketing role and later in Events Management. I followed 7 years at the uni with a return to schools, initially in a Administrative Management position and I am currently working in a school in a Comms and Marketing role. Education, actually I should say Catholic Education, is so ingrained in my life; it’s something that I value above most other things.

And now, 16 years after stepping away from the blackboard, I find myself in a position where I am once again able to guide (a very small) group of students on a learning journey. I’m not going to use the word ‘teacher’ but rather ‘co-learner’ because I am absolutely certain I will learn as much from these kids as they will from me. I will be leading an interest elective unit aimed at building a ‘content creation team’ at St Luke’s Catholic College in Marsden Park. This course is part of the College’s ‘Adventure Learning’, a program enabled by a clever use of time which allows every student (from Kindergarten to Year 7) CHOICE in a course run for 1.5 hours each Wednesday afternoon. These courses are well outside of the traditional curriculum and include things like ‘Slime Madness’, ‘Design and make a Pokemon’ and ‘The Next Angry Bird’. My course will see students developing quality content, after identifying audience and learning about what types of posts are most engaging, for posting on the College’s social media platforms.

I am approaching this opportunity with an enormous amount of excitement and just a pinch of trepidation. I know that teaching is a whole different ball game now compared to what it was in 2002, but Adventure Learning isn’t your average lesson and St Luke’s isn’t your average school. It’s all different! The kids are super excited about being given the wheel when it comes to their learning and it’s impossible not to tap into that excitement. So here goes nothing.

Adventure Learning, here I come!

Stop yelling at people. Get busy talking with them.

While traditional marketing speaks (or screams) AT people “go there, do this, BUY THIS AND THEN BUY THAT”, content marketing is much more of a two way street. It is about providing interesting and valuable content for free, to ensure a really positive client experience, to build trust and a sense of community and ultimately loyalty to your ‘brand’.

Curating content for an organisation’s social media presence is a whole lot of fun and really rewarding, but it is an undertaking that can also be incredibly frustrating and enormously challenging. When that organisation is a school, it comes with a completely new set of trials; not the least being that for 12 weeks of the year, your main focus of your content (the students) are nowhere

to be seen because they are on holidays.

But this isn’t a time to relax and take your foot off the accelerator, in fact quite the opposite is true. How do you keep the momentum going during the school holidays? I am constantly searching for content ideas for schools and I generally come up with a whole lot of blanks. So I decided the time had come to generate my own list. I hope someone out there finds this helpful…

The first few things on the list are no-brainers: holidays.

1. Christmas. Send a Christmas message with a nice, Christmasy image. Send it on Christmas Day. Use a scheduling platform to schedule your post if you don’t want to actually do it yourself.

2. New Year’s Eve message. Build up some excitement about the year that is to come. Reflect back on the year that was.

3. New Year’s Day message. Same as Christmas: send it on the day. Make it full of hope and excitement for this year ahead.

4. Easter. Send an Easter message. Send it on the day. Schedule it if you must.

5. Australia Day. Get your best Aussie on. Wish all your community a very happy Australia Day. Please be sensitive to Indigenous Australians as this can be a time of deep sorrow for them.

6. If you work in a religious school, you should definitely have all the relevant religious days marked out on your content calendar as a matter of first priority.

• Are there any other holidays you can think of that fall during the school holidays?

Set challenges for students to be involved in every day during the holidays and then promote these challenges and remind parents of their existence! Some holiday ‘challenges’ could be:

Read something every day. Your school holiday posts around this could include promotion/reminders of the event.

7. Posing a question such as ‘What are you reading today?’

8. Ask students for feedback on their favourite authors (do this before they go on leave) and create a video.

9. When they return, ask them specific questions about the books they read and create a reading list for the following school holidays.

Other challenges could include:

10. Take a photo of your holiday. Submit your best shot.

11. Design a postcard for somewhere you visited during the holiday (it doesn’t have to be somewhere exotic or far away, the local park would be fine).

12. Calculate how far you travelled on your holidays.

Take your followers ‘behind the scenes’. It may sound mundane but keeping people up to date with what is happening at the school during the holidays is important.

13. Highlight a major cleaning or maintenance project.

14. Share photos of any building or updates taking place.

15. Share images of the school empty and quiet and remind students how much you are looking forward to their return.

Staff. Anyone who has ever worked in a school knows that staff don’t go on holidays in the same way that students do.

16. Share a photo of staff in working during the holidays, commenting on their commitment to the students.

17. Remind families that staff are in at the school, planning and making preparations or meeting.

18. Do a staff profile.

Quotes. A relevant quote with a great graphic.

19. A quote about reading or learning

20. Again, if you work in a religious school, a bible quote that is pertinent to your charism or some particular event or time in your religious calendar.

21. Something fun, and a bit light-hearted, to make people smile.

Sporting or other events. There’s nothing wrong with sharing news that is not necessarily related to your school, but may be of public interest.

22. If the Olympics or Commonwealth Games are on, go for gold! Post inspirational quotes or messages of congratulations!

23. If there is a sporting event such as a grand final, you can ask your followers who they are backing.

24. If there is a team or a person who is even remotely connected to your school participating in a major sporting event, be sure to wish them well.

More and more parents are turning to social media for updates and information. You could include posts such as:

25. Return to school dates

26. Reminders about uniforms

27. Upcoming dates for the following school term

And finally, just for fun, play around with your social media platforms a little. Remind people that you are there. Get nostalgic.

28. Post something about an event that is happening in the local area; a fun run, a charity event, a school holiday special event. Really become a part of the local community. If you promote local events, you may just get a shout out in return.

29. On this day. Have a look at what was happening ‘on this day’ in history. Who was born? What monumental historical event took place? What little fun fact can you find relevant to the day?

30. Throwback Thursday. Such a cool way to tap into the nostalgic souls among us. And it’s fun looking back through old photos too!

So there you have it. 30 ideas to kick off your holiday content creation. Have fun with it! Remember to ALWAYS include an image and keep the community building happening while the holidays are on.

The Human Goldfish

I’ve noticed something about myself lately and to tell you the truth, it’s a little disconcerting. I think I’m losing my ability to concentrate, to focus. My attention span is diminishing.

Long have we mocked the humble goldfish for its memory and attention span shortcomings, but seems we are well and truly catching up to our golden friends.

The only consolation for me is that it would appear I am not Robinson Crusoe when it comes to this matter. Could it be that diminished capacity to concentrate is a worldwide phenomenon? A 2015 study (with over 2000 participants) by Microsoft Corp in Canada indicated that our average attention span had dropped from 12 seconds in the year 2000 to 8 seconds in 2015. 8 seconds! Remember our ill-fated friends, the goldfish? Well they have an attention span of 9 seconds. They’ve got us trumped on the attention stakes!

It’s little wonder, with the amount of stimulation we are presented with in this day and age, at every waking moment, that some of us may have difficulty focusing for any length of time. I am guilty of multi-screening on a regular basis. And also of reaching for my phone at the drop of a hat; waiting for a coffee order for example. God forbid I spend three minutes of my precious time doing…. nothing!

But it’s not just screens. This stimulus is everywhere! Billboards, radios, bumper stickers, catalogues, movies, Netflix (what sort of commoner WAITS for a tv show to air, once a week? Ain’t nobody got time for that!)… the list is endless.

I should make it clear at this point that I have zero scientific evidence to prove that this en masse decline in attention is actually happening. I’ve not read any scholarly research papers nor have I conducted any studies of my own. My writing about this is based purely on my own experience and reflections (with the exception of finding the reference to the Microsoft Corp study). But if there is any truth in the matter, then I am asking myself two questions:

1. What are the implications for me, living my life, now in 2018?

2. How can I reduce the ‘noise’ and find more time for quiet mindfulness in my day?

My reality is that, as a major part of my work, I am creating content that contributes to the distraction or “noise” of our world. I am constantly trying to make content that is more and more attention grabbing, that might be glimpsed as people scroll through their social media feeds at a rate of knots. The irony is, that this very blog contributes to that noise.

I am permanently within reach of my phone. If I forget it, I feel as though I have had a limb removed.

I am very much a part of my own problem.

But what about for other professionals? Teachers with students in their classes who are used to being constantly ‘entertained’, transport drivers who spend hours on end on our roads, doctors and police who have to make life or death decisions, sometimes on the spur of the moment. Our ability to focus and react is a crucial part of our every day lives.

And of course there is the impact on relationships and our own well-being, but that’s a blog for someone with a whole lot more qualifications than I will ever have!

As for turning off the noise, reducing the distractions, shutting down the stimulation… I am going to try to practice more mindfulness. Meditation and art practice are a good place to start (for those of you who’ve never tried it, give colouring-in a go). There are so many little things we can do that might help us find some still. Go for a walk (leave the phone at home), turn off the TV, become more aware of your screen time, have a snooze, treat yourself to some pampering.

Of course, this could all just be some crazy imagining in my own crazy head. But I don’t think so. Have you noticed a decline in attention span? In yourself or in others around you? What do you do to shut out the noise? I think it’s time we did something about it, before we all become a population of human goldfish.

Telling the Story, Building the Community

Storytelling is almost as old as humankind itself. Using elements of oral language, gestures and basic paintings or drawings, storytelling predates writing by entire ages, but remains as relevant to human existence now as it did in its very earliest forms of being.

Some might say that storytelling is what sets us apart from all other animals on the planet. Stories can teach us about the most basic human survival, educate us about all manner of things and provide entertainment. Stories can pass on lessons of history and imaginings of the future. And in all this, stories help to form society and the communities within humanity.

Storytelling has come a long way; from cave paintings and Greek poets to Shakespeare and the introduction of radio; the potential for people to tell their stories to an ever-growing audience has become almost limitless. Of course, the advent of the internet and subsequent social media platforms has made publishing to the world an act almost anyone can undertake.

For the last eight years I have been ‘narrating stories’ via social media as just one part of my work in schools and over the last 12 months in particular I have discovered storytelling to be a fundamental tool in building a community in a brand new school. When St Luke’s Catholic College opened for operation in February 2017, our student body came from 31 feeder schools and our staff from an equally diverse background, so it was imperative that we share our story in order to draw the community together.

Using the power of social media for good has been beautifully apparent in the way Facebook, Twitter, YouTube and Instagram have been implemented to build the St Luke’s story during 2017. The response from parents was a clear indicator of the popularity of the platforms. Feedback such as “Really enjoying seeing the children during the day, it gives us a platform to talk about their day” and “We are able to follow what’s happening inside the classrooms even we are working and away from our children during the day” indicates that parents are happy to be kept in the loop about what is going on at school. Further, prospective parents advising that they chose to enrol their children at the College because they had been ‘watching’ the St Luke’s story on social media, would indicate that news of the College is spreading far beyond the reaches of our immediate community.

Of course, we recognise that the use of these platforms is far from perfect, but in the first instance, the use of social media to tell the St Luke’s Catholic College story has afforded us the opportunity to build a strong sense of community among the current families and to share the information with a much broader audience, ensuring continued growth at the College.

 

People matter and stories matter. People relate to stories, they feel a connection. Telling the St Luke’s story for the first 12 months of the school’s existence has been a privilege and I look forward to the next chapter. In the meantime, you can follow the St Luke’s story on any of our social media channels: Facebook, Twitter, Instagram, YouTube and LinkedIn.

Coffee, Art and Planet Earth

Through my very existence I am bad for the planet. I eat food (including beef and God knows that’s an environmental disaster in itself) and I produce waste. I wear clothes, I drive a car, I use electricity and sometimes, please forgive me, I drink coffee from disposable cups. 

I have an album of photographs on Facebook of the artwork that is often found on these very same disposable cups. Some of it is incredible, designed specifically for the shape of the cup, much of it is beautiful and it leaves me always, with a smile on my face. But lately I have been left wondering whether people judge my celebration of this art based on its canvas. So I need to set the record straight…

I have as much of an environmental conscience as the next person. I have created entire artworks out of rubbish. I am a chronic recycler, making sure I sort my household waste to maximise the amount that goes into recycling and minimise that which goes to landfill. I have been known to pick up rubbish while out on a walk, making sure that I recycle (or upcycle) what I can when I get home. Clothes too old or damaged to donate to charity are reused in a variety of art projects. I’ve recently begun experimenting with weaving a new rubbish receptacle (who knows, I might use it to collect my recycling) out of old plastic bags. I strike cuttings from plants and pass them on to my friends. As often as possible I try to buy fruit and vegetables from local farmers markets, but when I do get them from the supermarket, I buy as local as I can and I never use individual plastic bags. When given the option I never print receipts or bank statements. I grow my own herbs rather than buy them prepackaged and despite living in the Blue Mountains, where things can get very chilly indeed, I use a hot water bottle and extra blankets as opposed to the electric option. 

Perhaps the greatest gift I have given to the future of the environment is one that comes from circumstance: I have not had any children. I have not created any carbon producing, food eating, car driving, coffee drinking humans who will continue this pattern of consumption and waste production well into the future.

And so eco-warriors I thank you, I sincerely do, for your efforts in preserving our planet. But please don’t judge me for my appreciation of beautiful art and please don’t think that because I occasionally drink coffee from disposable cups that I am out there ravaging the environment in every other way possible. Please continue to share your concerns and attempts to educate people (I genuinely mean this) by modelling environmentally sound practices in your own day-to-day existence. The combined efforts of everyone can go a long way to making a difference. 

PS – I have just started putting plant cuttings into disposable coffee cups as inspired by the good folks at my favourite cafe. Let me know if you want any! 😊

Connected Disconnected

Scrolling through my social feeds recently I came across this animation by Steve Cutts:

Are you lost in the world like me?

(The irony is not lost on me, by the way, that I watched this one my iPhone and you probably just did too).

My heart sank and I was filled with a weird kind of dread that I contribute, in a massive way, to this crazy world of being obsessed with our phones and our irrational ‘Fear of Missing Out’ – a very real phenomenon known as FOMO in the digital world.

The very nature of my work is conducive to this digital world. I measure my KPIs by engagement, yes the 👍🏻, 😂 and ❤️’s matter to me; they tell me that I am reaching people, that I am connecting with them. So all of a sudden, I am full of self-doubt, wondering whether this work that I do is valuable or detrimental, wondering whether I am helping people or harming them. What sort of culture do I belong to, do I build?

Many people harbour a great deal of suspicion about social media and there is no doubt that in the wrong hands, it can lead to significant harm. Cyber bullying, hate crimes, calls to action for evil: all acceptable reasons not to dig on social media.

But I believe in the power of social media for good.

• I am determined that every relationship built or nurtured on social media is genuine, after all, what is the purpose of a shell of a relationship? Why would I spend the time I do if it wasn’t genuine?
• I see social media as a great way to support and champion causes that mean something to me. Just today, my Big Freeze 3 beanie arrived in the post. I bought it after seeing it on the Fight MND Facebook page.
• I use social media to share art and beauty and culture and creativity.
• I search out readings that are of interest to my work or personal life. This includes educating myself as much as I can about new research into Multiple Sclerosis.
• I find inspiration, for a new art project, for places to travel and things to cook, from my social media feeds.
• I seek recommendations, advice and information from my professional learning and personal networks.
• And social media makes keeping in touch with my family half a world away as easy as anything.

With all that I take from social media, I try also to feed back. I try to share interesting content, to support and encourage friends, to share information about businesses which I think are providing a great service or product, to share ideas and thoughts.

Believe in the power of social media for good. Make your connections genuine. Be purposeful in how you use social media. Use the THINK acronym: Is it True, Helpful, Interesting, Necessary and Kind? Respect others, in every way, from how they might react or feel about your posts, to acknowledging the ownership of their work.

We have an enormously powerful tool right there in the palm of our hands, let’s ensure we use it in the best way possible. For everyone.

The Invisibility Cloak I’d Rather Not Wear

On any given day, without notice or consultation, my body can launch a mutiny against me. A complete rebellion, a stop-work, an uprising, a revolt. At the helm of this insubordination is a nasty little miscreant called MS, or Multiple Sclerosis if you want to get formal about it.

MS is a sly, cunning and cowardly creature, because while it delights in creating utter chaos in its host, it is very cautious about showing its face or any sign that it has even been there at all. Only when it gets to its strongest does MS finally become brave enough to allow itself to be seen.

Now don’t get me wrong, I am grateful that MS has not affected me to the extent where my symptoms are visible, it’s just that you can start to feel like a hypochondriac when you are feeling really crappy but no-one can see it. People KNOW I have MS, but I’m pretty they don’t UNDERSTAND how it affects me (not that I would expect them to, I never understood MS until it took over my body). How can anyone understand fatigue when they have never experienced it? How do you explain that it is different to being tired? How do you describe the effort it takes to drag yourself out of bed?

Who can know the pain of optic neuritis except for people who have experienced it? How do I explain the driving force on my eye when everything looks completely normal?

And so it goes with most, if not all, of the symptoms that present themselves to me. A hand on fire, a stone in my shoe, that persistent prickly sensation that feels like I’ve come from the hairdresser and they haven’t brushed away the tiny pieces of hair they cut off.

The difficulty that arises from having an ‘invisible disease’ is a sense of isolation and going it alone, despite undying support from family, friends and colleagues. Unless something is really wrong, people generally think you are doing ok. The lack of visible signs of the presence of the disease means that it is something mostly endured alone. The frustrating part of all of this is that I don’t want visible symptoms; these will mean that my condition has deteriorated and that is what I am trying to prevent.

So how then do I reconcile the absence of visible symptoms with the sense of isolation? In the years since my diagnosis I have become braver at talking about my MS. In the first instance I was very secretive about it, I didn’t want anyone to know. Now I try to explain the condition and its impact on me. I blog about it and try to learn as much about it as I can. Information helps to demystify this curious beast and my own understanding helps me to make things clearer to others too. I campaign and promote and fundraise and I hold out for the news that they have discovered a cure. I believe in my heart of hearts that scientists will one day be able to regrow myelin and the scars that litter my brain, and create the chaos they are currently creating, will be no more. And when that day comes, MS will be as invisible to me as it is to you and that will make me one very happy person that ‘used to have’ a disease called Multiple Sclerosis.