LESSONS FROM STRANGERS

I'm almost one month into my three months of not driving.

So far I'm doing ok. I'm walking a lot, getting lots of lifts from family/friends and catching way too much public transport. 

After living in Melbourne for six months, public transport over there was not a problem for me. Where I was living, there was a tram just out the front of my house that came every 5 minutes which took me straight into the city. It was an absolute breeze!

Returning home to Perth, public transport is at the opposite end of the spectrum. A lot of extra time needs to be added on because most often you'll need to catch more than one bus or train to get to a certain place. And if you ask anyone who does this commute daily, they'll describe it in a furious manner with many expletives muttered in between

To give an example, the new Optus Stadium (still wondering why they couldn't have just called it 'Perth Stadium') will only be accessible via public transport. Cars can't drop people off close by like they used to at Domain Stadium/Patterson's Stadium/Subiaco oval. And because of this change, people are furious because they'll have to take many trains/buses to get to the stadium. Or as how other people describe it, 'they need to stop making Perth transport like Melbourne transport.' 

If you've read my previous post, you would know that I'm doing my best to put the phone screen down at the moment. Well because of this, I seem to be having more conversations on public transport with the people around me.

For example, last week I was chatting to a lady on the bus who was in Perth for a psychology conference. In the 20 minutes that I was on the bus for, we got chatting about each others' family and reasons for our chosen careers. She told me about how she had taken several years off work to look after her unwell child and was now finally in a place were she could return to study. She also told me about her husband who had studied acting at the Western Australian Academy of Performing Arts (WAAPA),  but turned down a career in it to take up professional photography.  Life for her and her husband had changed dramatically over the years, but together they just kept pushing through the tough times.

Today I had a chat with a lady on the bus who has been in Perth now for 24 years. Her and her husband came here for a holiday in 1994 and loved it so much that they decided to move their whole British family over here. She told me how important it was for them to embrace new and exciting opportunities because life is too short to waste them. If she hadn't taken the risk, she wouldn't be so content about life right now as a retiree.

With my 24th birthday coming up next week, these ladies have taught me two very important lessons:
- Yes, being 'unemployed' sucks. But, tough times do pass and this tough time won't be forever. I just need to keep plodding along. Something will come up!
- I need to get out of my comfort zone more. For me, getting out of my comfort zone is like being thrown in the deep end and not knowing how to swim out of it. It's difficult, but sometimes that's the best way to learn and become a better person.

Public transport in Perth will improve as the years go on, but like my conversations with these two ladies, lessons from strangers on public transport will help improve things for the days and years to come. I'm going to make the most of the next two months of not driving and try and learn from as many more people as I can. 

Until next time....

AT xxx 

RARE DISEASE BURNOUT

It's been 10 months since I posted anything. Why? It's actually really simple. I woke up one morning and the urge to write was gone.

OVERNIGHT I didn't want to share my life with CS anymore .
I didn't want to be different with all my ailments and tests and surgeries and nonsense AND
I especially didn't want to talk about my daughter Ashton any more. It was too painful.
Enough was enough. I had rare disease burnout.

I suppose in retrospect, I felt that if I went quiet the condition would too. Let's just say it didn't go anywhere.

Time is a great healer of emotions and not surprisingly that's why this blog is back. You see we're not done. We'll never be done. We have a role to play with advocating for this medical condition and we take that role seriously.

You notice I say WE. Yes, from now on this blog will be a joint effort and I will let my daughter tell her own story. There may be overlap. I am after all a parent of a child with a rare condition. I happen to have the same condition. 1 in 200 000 and we have 2 in this family of 4. Still does my head in.

So since we met:
-While actively trying to pretend I didn't have a medical condition, my mother was diagnosed with cancer. She is a private person so I will not discuss her condition. The only thing I want to say is that her primary cancer was in the bowel and this has made me question her negative CS diagnosis again. But it is really pointless to pursue this now. The months have been filled with being a daughter and helping my mother through this in any way I can. I won't lie. It's been hard.

- The aftermath of the gastric sleeve surgery from hell is an unwanted gift that keeps on giving. Despite another procedure to dilate ( open up) my stomach opening, eating is no longer a pleasure and causes me no end of grief. But...we will leave this for another blog post one day.

- things keep growing on me. Remember, a person with CS has a tendency to do this. At time of writing an odd shaped cystic lesion is growing on my stomach wall. I'm sure its benign but I'm off to the plastic surgeon next week to make sure. It's ugly and very annoying but unfortunately it's not alone. My arms are unsightly with scarring from previous lumps and more are about to join them as new lumps have emerged. These are usually lipoma ( harmless) and they are removed when there is a good reason. My good reason for this one is IT HURTS. My plastic surgeon is great. He takes them off when I've had enough.

- I'm meeting a new specialist in two months who supposedly can manage my condition for me. After managing myself for years I'm slightly cynical. This is gonna be good.

Till next time
ST

NORMAL LIFE vs HYPER REALITY

Do you spend too much time engrossed in social media? 

Do you find that you know way too much about a person that you've never met?

Is the first thing you do in the morning check in on Facebook to see what you missed overnight?

If you’ve said yes to any of the above, we share a very deep connection. 

Hi I’m Ashton and I am a social media addict. 

Yes that’s right , I am a social media addict. And after many years of denying it, here I am finally admitting it. It's become an unhealthy obsession and I've just about had enough of it. 

My addiction with social media started back at 11 years old when connecting to the internet required dial-up and hours were spent redesigning my Myspace page. Since then, the world of social media has exploded with everything ranging from Snapchat to Twitter. Over the years I’ve downloaded and used too many social media channels to count. I’ve had everything ranging from a Tumblr blog to Periscope, which is a live video streaming app.  

The other day I was reading a well known social media influencer’s Instagram page (yes another social media channel!) I’ve been following her page for a few years now and really admire how she’s made a name for herself as a business woman and influencer in society. Her recent post spoke about people making assumptions and forming uneducated opinions about her personal life and the effect it has on the people around her.

It got me thinking. Why are we so focused on perfecting a certain look and forming a certain opinion because of what we see through a social media channel? The majority of social media content I follow is full of glitz, glamour, bright lights and flashing cameras. I follow many social media pages where influencers are frequently attending lunches, are gifted products from PR agencies and are dressed in the latest designer gowns at formal events. How am I meant to be the best version of myself when I am viewing content like this? Why am I so fascinated with this content when all it is doing is making me feel inferior? Who cares if that top is from XXX and costs XXX? Who cares if you've been gifted a piece of jewellery that costs XXX? I can't afford that, so why am I feeling like I'm not living up to societies expectations because they are posting this content?   It's just not real, and I've had enough of it. 

While this 'hyper reality' life is something that we'd like to become accustomed to, we often forget about what these people have gone through to get in front of those lenses. We don't see the hours put in at the gym to perfect that particular look or the tears because they've missed out on important family celebrations/weddings. Or even the stress to get a babysitter/nanny so that their 'social status' was not missing from an event.

As you may or may not know, in the last year I worked as a social media manager.  To counter defend what I have said above, social media is a great marketing tool for businesses to use in terms of creating brand awareness and business growth. For certain businesses it works a treat and it’ll be a part of their marketing plans for years to come.  In my personal experience though, being on social media all the time and using it in a way that has an effect on your personal life is somewhat counterproductive.

There is much media commentary out there about the effect social media has in society.  However, what I'm finding that they don't say is that when you're constantly comparing yourself and making assumptions about someone on these channels, it becomes exhausting, and you may not even realise this. You are living in a world where the switch in your brain doesn’t turn off. You are living in a hyper reality world that serves no purpose than to make you feel like you aren't conforming to what is 'supposed' to be right in this world. 

One thing  that I’ve learnt as a person with Cowden's syndrome, is how important it is to 'live in the moment.' Although this sounds cliche, with a medical condition that unfortunately comes with numerous medical problems, I want to focus this year on living life to the full.  It’s time to put the phone down and embrace myself more in what life has to offer. I know that it is easier said than done, (I can hear those of you saying ‘yeah fat chance that’ll happen Ashton’) but it’s something I just really want to do.

If you have any tips on breaking this hyper reality cycle I'm in,  please let me know! 

Until next time….

AT xx  

THE ART OF FRUSTRATION

How am I feeling right now?

I’m frustrated. I’ve been looking and applying for jobs for a month and a half. My days consist of looking at my laptop, sending off job applications, going for my daily walks, getting rejection emails from those job applications and watching at least one episode of Will and Grace a day. All I want is money for rent, money so I can buy food, money to have a life and money to go on holidays. That dream of dipping my feet into the pristine waters of Santorini just seems so unachievable at the moment…

During my first year of my communications degree, it was stressed that we get as much work experience in our chosen future field of work as possible. At the time, I was highly invested in becoming a journalist, so I went off and completed work experience at my local hometown’s newspaper. Fast forward a few years later, and after completing jobs that just weren’t right for me, I’ve reignited with my love of writing and love of telling people’s stories.

Since returning to Perth, I’ve been applying for numerous journalism and communications jobs.  Although I have past experience to do with these areas and have the skills to complete the jobs, the feedback from those emails/interviews has been something like the following:

‘We’re really impressed with your CV, however there were people who had more experience than you.’

‘We’d love to give you a job, but we haven’t got enough money to have you on board.’

‘You don’t have the paid experience that we are looking for.’

After all the work I’ve completed in paid/volunteer work, I STILL DON’T HAVE ENOUGH EXPERIENCE! And that for me is frustrating, because I have worked really hard in the past few years (on top of everything I’ve been through!) to get to where I want to be.

As my days have only consisted of what I’ve stated above, I’ve really been struggling to get out of bed in the morning. And for me that is FRUSTRATING because I am a very happy, bright and bubbly person. Although I have been trying my best to get motivated to achieve something each day, my morning routine sounds a little bit like this.

6:30am: ALARM 1  - ‘I can’t be bothered. I’ll set it again for 7:00am. ‘

7:00am: ALARM 2 – ‘NOPE. I’m only applying for jobs all day. I don’t have that much to do!’

8:30am: AFTER SCROLLING ON MY PHONE FOR AN 1HR AND 30 MINUTES -  ‘GET UP, GET UP, GET UP. DON’T WASTE YOUR DAY.’

Here’s another point to add to my frustration. I can’t drive for three months. Yes that’s right. Yours truly had another seizure a couple of weeks ago and now can’t drive for three months. I’m desperately trying to think positively about the situation. If I go anywhere, I have to add on at least 30 minutes preparation time so I walk to the place or catch the bus/train. While it’s great exercise, I have moments were I just want to fire up my car engine and head off somewhere.

This period is tough and frustrating for me right now and especially when you have Cowden's Syndrome because you’ve got to think about your health at the same time.  This phase will pass, but I just don’t know when.

Now that I’ve got my frustration off my chest, I’m off to watch another episode of Will and Grace.

Until next time….

AT x

HOW ARE YOU GOING?

Are you OK or how are you going are the hardest questions for a person with a rare condition to answer. I get asked these question dozens of times a week and each time I stumble over my answer. You see they are usually asked because a person is genuinely being nice. Sometimes they are asked because a person is being nosy. And other times, especially in Australia it is just habit.

So how does one answer these questions without offending the genuine and do people really want to know the proper answer anyway? I find myself increasingly answering "good thanks", simply to get the situation over and done with. I find myself realising that people don't need to know and sometimes don't really want to know, so I feel I've saved us both the trouble really.

It really is quite exasperating because this ends up feeling like I have been issued with a gag notice. You must not and can not tell people the truth about how you are going, because in reality they can't possibly understand. Some gave up trying to understand my condition and my daughter's ages ago. They don't understand why we are not fixed, so when they occasionally slip up and ask how we are going, you almost see a look of terror on their face. OH NO, SHE IS GOING TO ANSWER. I think that people don't know what more to say and I get that. The first time she was sick I was 100% supportive but by the twentieth time, I don't know what to say to her.


Of late I have even started the "good thanks" business with family because for some reason I always feel like I am trying to out do their problems. And that is not fair. Everyone's reaction to their situation is relative to their experience. A lump in my body results in a systematic approach to investigation. I do it without blinking. A lump in someone else may elicit pure terror. Although the lump is more likely to be nasty in my case, I zip my lips. Everyone has to feel their own way and their own terror. A friend recently had a melt down because he needed a blood test. Oh LOL.


Maybe I should adopt my uncle's approach. When he came to visit us in Australia from Malta, he seemed completely baffled why Aussies use the phrase " how are you going?". His initially couldn't figure out why people always asked his mode of transport. After laughing my head off we explained it was a way of saying "how are you". Maybe I should just answer " by car" to everything, like he initially did.

A week in the life of someone with CS varies. My daughter and I have what we call "doctors weeks" where we try to make sure we use our time wisely to avoid the 450km trip back to the city. So between us it could look something like this - specialist visit, mri, blood test, endoscopy. I haven't made that up. That was a few weeks ago and its not unusual.

So when you ask if I'm ok this is what I want to say:

I'm worried about that lump.

I'm worried about the ongoing radiation.

I'm scared the nurse who bruises me will do the blood tests.

I'm terrified of more damage to my stomach.
I'm worried about the bills.
I'm anxious at missing work.


But I can't because it makes people uneasy and uncomfortable. I save it for the precious few who can still cope and for the majority I answer "I'm good thanks". It's not fair but its what I've got unless you want the " by car" answer.


Till next time...xxx
ST

WHEN YOU GROW UP

Growing up is hard. In a classroom I frequently have to remind myself that the behaviour of a student

will be different " when he or she grows up". I have to remind myself to be patient, calm, methodical and non argumentative when all I want to really do is slap their bottoms. It's taxing but it will be better "when they grow up".

Enter Sam a 14 year old boy with overactive vocal cords and quite possibly ants in his pants because he can't sit still. Sam is the class clown. He reminds me that we met last year in his old school and as I have deleted said meeting from my memory banks ( if it ever happened), I pretend to remember. Big mistake. He then proceeds to say something inappropriate to his mates who all laugh. He has a team. Game on buddy.

Sam twists and turns and talks out loud, especially when I'm talking. When reminded of correct behaviour he stops for a millisecond, before continuing. He then asks to go to the toilet and delighted to have 5 minutes peace I agree.

Sam returns and resumes his conversations with his admirers. Time to take out the allies. I ask him to move to a seat in front of me. He initially refuses as it would ruin his tough guy reputation. I focus my look on a spot between his eyes and he caves...momentarily. He gets his own back by announcing to the class that I want to get closer to him. I ignore and sit on my twitching palms. He'll be better when he's older.

I ignore the hand waving in front of me until there is some writing on his page. So he scribbles something. He wants to go to the toilet. " But you've been!" I say.  "No, I couldn't find it" he says, " so I came back".

Now this is possible BS or possibly true. These kids are new to this school. I take him outside the door and point out the boys toilets. He scoots down the stairs and I pray there is no deputy principal wandering. Actually at this stage, truth be known I didn't care.

He returns and sits himself in front of me. I ignore him and do a round of the room. I return as he has been trying to rev up his team from afar. He asks me if I'm aware one of my eyebrows is higher than the other. I ignore. He tells me my nail polish is pretty. I ignore. He turns round and engages with an ally. I react calmly and move him to a table and chair outside the room, on the verandah. He is mortified and now worried as the head of department is close. For a moment I feel sorry for Sam. He is just a kid and it will be better when he grows up. But there are 20 something others in the room and my sanity to contend with.

Years ago I taught a different Sam, a female one but equally argumentative and difficult. This Sam was with me for 10 out of her 30 lessons a week and though many times I literally wanted to kill her, she remains one of my favourite students ever. She was loud, pig headed, adamant she was always right and hard work. As I got to know her I realised she had the biggest heart, was super loyal and defended those she loved at all costs, even if she got suspended, which inevitably happened. When my daughter moved to college in Perth, she threatened to move in. I used to laugh but took it as a compliment of how far we had come. She was getting better as she grew up!

This week, five years after she left school, I received the most beautiful note which touched me deeply. Here is part of it:

And also I don't know if I have said it before but reading some of your blog posts and growing up a lot now I feel so horrible for how much of a brat I was in school for you. Knowing some of your stories and your sickness I feel like such a little brat (which I was) and feel terrible as back then you would have been dealing with and going through hell. I thankyou for all the love and support you still gave me regardless through it all. I hope you are well.

Wow...wow...wow
Talk about getting better with age! So glad for the gift of patience that has enabled me not only to deal with students in my career but also the hurdles my condition presents sometimes on a daily basis.

Till next time...xxx
ST

PENCIL PAIN

There is nothing more irritating to me than the sound of someone tapping their pen repeatedly on a

table and so when I found myself in this situation this afternoon, I gritted my teeth and waited for it to stop. It didn't.

Now the person in question is a 12 year old boy and my experience with this age group is that pretty much , NOT MUCH, resides in their head. I mean they have a brain and all that, but it's obvious that the brain is in a try before you buy phase. Let's call the boy Ryan because that's not his name.

" Ryan, I'd really like it if you stop tapping your pencil and use it instead to do some work".
" Ok miss" ( I'm eternally unmarried in public school).
I watched as Ryan looked me straight in the eye and started tapping his pencil again. This little sod is now upping the ante.
Take 2 - " Ryan please don't tap your pencil. It's very distracting to everyone ."
" Ok Miss"
Once more he looks me in the eye and continued tapping.
" Ok Ryan, make a choice, keep tapping and you'll lose the pencil and have other consequences OR stop tapping and do your work"
" But if you take my pencil, I can't do my work!" ( flipping 12 year old male logic).
" Make a choice!"
" I'll do my work"
" Good choice. Well done.
He then proceeded to once again look me in the eye and tap the pencil.
" Oh Ryan bad choice, 5 minutes detention after school.
"Why?" ( is this kid for real???)

" We'll discuss it after school.
Ryan then proceeds to do one whole minute work without tapping. He is joined at detention by another darling with over active vocal cords.
" Why have I kept you in Ryan?"
" Err dunno "
" Well maybe I have to let you sit quietly for a while till you come up with a reason."
" I didn't do my work".
" No"
" I talked too much".
" No".
" Any other reason you can think of?" ( shakes head).
Another couple of minutes to think while I dispatched vocal cords.
" Anything new Ryan?"
" Was it the pencil?"
Bingo.

The story concluded with a discussion about him looking me in the eye and deliberately doing the wrong thing. He repeated to me what he had done wrong and told me what he would do differently next time.

Hmm

Day 1 - school is back and the teaching of social skills and manners is up and running.

Till next time...xxx
ST