Living with Heart

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Ableism and The Bold & the Beautiful (yep, you read that right)

Profound words from Zende Forrester on The Bold & the Beautiful – “You know, you never really see sick people in this country, they’re always in hospitals or in their homes – out of sight. It’s almost like you can forget about all the hurt in the world.”

Well, never let it be said that I don’t plumb the depths of TV for meaningful quotes! And yes, it is a sad and tragic fact that I watch the Bold and the Beautiful. But I ONLY watch because I have a dear friend – who shall remain nameless – who also watches. Now this friend has a PhD in Literature, so by association, my watching the show is somehow elevating me to a more intellectual level. Now back to the quote.

Quite a powerful message that Zende Forrester is putting out there but really very true. (I think that’s his surname – but you never know with this show). A large portion of society just doesn’t see us and they are happy with that. It’s like we are physically invisible as well as having an invisible illness.

The quote makes a generalised judgement of what a ‘sick’ person should be doing. If you are sick you should be in hospital, in your home or out of sight. This attitude makes my head want to explode!!!

If you are really sick you should have a walking stick, a wheelchair, a plastered arm or no hair. There needs to be something physically present for you to be really ‘sick’. I can see all your heads nodding as you read this – been there, heard that and you’ve got the t-shirt to prove it. Yeah, it’s getting a bit tired.

How many times have I heard “But you look so amazingly well”. I’ve heard this from Physiotherapists, Exercise Physiologists even GP’s – health professionals that should know better than to push there ableist schtick onto me. If I don’t look ‘sick’ then I must be well. Damn – I wish someone had told me how easy it was to be ‘well’ – I would have tried it years ago.

I’ve come up with some witty responses to the above – things like “Yeah, it only takes $500 of medication a month for me to look this way” – but what I really want to say is “take one step in my shoes and you’d be on the floor mate”.

I am very lucky to have friends and family that mostly understand about my Psoriatic Arthritis – but do they? How can they really understand when I play the game and put on the front to make other people feel comfortable? To make it easy for them to understand? So I really play the ableist game. I put on the lippy, I put on the bright dress and I use valuable energy to flat out dazzle my friends. (Yeah – I know we went through this the other week and the dazzling could still be a warped construct of my mind).

I pretend – and I’m OK with that most of the time. But I do go to some crazy extremes.

For instance, if I need to take pain meds when I’m out, I look around and make sure no one is watching and surreptitiously start riffling through my ‘special’ medication bag. This ‘special’ bag resides inside my handbag and I can access any drugs in there by touch alone – which is a super advanced skill that has taken me a decade to perfect. I know the shape of panadeine, the roundness of panadeine forte, the little curve of codeine. So no one sees my ‘special’ bag but me. (Except for HotY – who sees all)

Once I have the meds in hand I do a quick sleight of hand bag to mouth and take a swig of my precious water. Going to all this trouble to disguise the medication I need to keep me functioning – is really just me pretending to be well. And that makes everyone comfortable. They can look at me and think “I know that Michelle has psoriatic arthritis but she looks really well so I’m going to just not think about it.”

This is something I struggle with – but I’m also OK with most of the time. I don’t want to burden my friends with the absolute reality of my illness – so I just pretend when I’m with them because I need the connections.

Friendship connections are really important for me and I do have amazing friends that I can share parts of my disease with – but I still do the ‘drug sleight of hand’ – even with them. There is only one dear friend – an ultra marathon runner – who has ever asked me what was in the ‘special’ bag. Showing her the contents was a bit like walking naked in a shopping centre…but she still embraces me even having seen the contents.

So what would happen if we all stopped pretending? I don’t know and I’m not sure that I want to find out. I don’t want my disease to intrude any more into my life than it already has, constantly creeping in like a surprise high tide carrying debris. I’m happy to use my energy on feeling content, on learning and living. If that means I’m playing the Ableist game – well, I can live with that.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective.


Parenting with Arthritis, Manifestos & a Benevolent Dictatorship

Parents are the bones on which children sharpen their teeth. Peter Ustinov.

This was written for me, my kids, my family. At one stage I had this quote on a sticky note on our microwave – it so resonated with me and HotY.

Parenting is like climbing Mt Everest – parenting with a lifelong painful disease is like climbing Mt Everest on a downward escalator, blindfolded with no oxygen. You don’t even know when you’ve reached the freakin’ top! It seems to be all just hard slog, fatigue and pain.

The only way that I’ve gotten through the last decade was by being organised, by choosing my boundaries really carefully, by constantly negotiating, by not sweating the small stuff and by making it very clear (like crystal clear) that HotY and I were in charge – totally. Our catch cry became “we run a benevolent dictatorship and we do not negotiate with terrorists”.

There were times we felt that our kids had been replaced by terrorists intent on destroying peace in our home. There were times we despaired that our kids would come out the other end – but they did.

That time Dizzle tagged himself on Facebook in a nightclub at the age of 16 – What.The.Hell. And then he had his fake ID next to his real one – really? As I cut his fake ID into 17 satisfying minuscule pieces I said to him ‘Are you seriously this unsmart! You’re making this way too easy for us’.

But it wasn’t easy. In no way was it easy. That was the front I had to put up. That was the face of ‘you’re not phasing me mate – give me your best shot’. That was me hanging on by one fingernail to being my version of the best parent I could be.

Each and every one of these confrontations sapped me of energy leaving my symptoms flaring. Pain, fatigue, stiffness and knowing it would still be there the next day. So how did we get through? Manifestos held the key for us.

If you go to the ‘WHO I AM’ section at the top of the page you can read about my parenting style of calculated neglect. My adult kids are the product of this – but there is a hell of a lot in between the beginning (sweet child) and the end (the self defining functioning young adult).

Manifestos – yeah the name gives it away…
On the fly – we had to create a way to parent that left no leeway for the kids to manipulate me when HotY was at work. The four of us wrote our first Manifesto when both kids were in High School. More commonly known as contracts – it’s a tried and true way to have a group agreement on behaviour, expectations and consequences. Basically an outline for living with each other in a – if not comfortable – then stable way.

We called them manifestos as a purely tongue in cheek ‘hats off’ to all those manifestos that came before. And being a benevolent dictator meant I was never going to be a Stalin or a Hitler – although there were times…

For us, these manifestos gave structure to after school hours, internet use and extra curricular activities. The four of us all sat down at the beginning of each term and would reassess and redraft a manifesto for that term. It would be written, edited and when all parties had signed then it was put on the fridge as a reminder to us all of the expectations.

The most vital point of this is that your teens need to have skin in the game. They need to have a say and be a full part of the process. In the same spirit we – as parents – needed to compromise. What the hell – stuff the small things, let them go. Gone – see you later. HotY picked you up from a party at 17 with the smell of alcohol on your breath – not touching that – got bigger fish to fry.

HotY and I would always have an end game in mind before we sat down to the negotiating table. There were issues that we were incredibly lenient about – we allowed consumption of alcohol while Gem & Dizzle were underage (within reason and in a controlled way) and we allowed boy/girlfriend sleepovers in Grade 12.

These turned out to be win-win issues because it provided a platform to discuss sexuality with both kids when the issue of sleepovers came up. If they wanted to have the sleepover then they had to be able to discuss contraception, respect for their partner, discretion, self respect, relationships ending and everything that goes with.

There were other issues that were lines in the sand. If either kid was not performing at school to the best of their academic and behavioural ability then the privileges started to disappear.

It was important at this stage to be realistic about what academic abilities our kids had. No use accepting C’s when the kid’s cruising and could be getting B’s. Also, no use expecting B’s when your kid is busting their guts to get C’s. Again, choose your battles.

These Manifestos were key in keeping everyone on the same page and minimising the after school angst that you all know about. I felt a real sense of calm if there was a Manifesto on the fridge – OK so that’s my uber controlling side showing again. But it was important for me if I was having a really bad pain day to know that there were still rules in place, homework guidelines for the kids to follow and a general direction.

The priority of these manifestos was 1. meeting school academic requirements, 2. meeting sporting commitments, 3.meeting family commitments and 4. controlling the often overwhelming social & social media lives that both kids had. This involved a massive amount of negotiation on social media use and a few ‘disabling of Facebook accounts’. By the way, do you know how hard it is to disable a Facebook account? It’s like you’re part of a cult and they won’t let you go. They.Have.You.

So that’s the framework of our parenting – and it sounds really cool. Like, I sound like an awesome parent and like the most benevolent dictator ever heard of. But you know that’s just the glossy colour enhancing filter I popped on. Reality always intrudes. Mostly, reality was named Dizzle – but Gem had a few spectacular appearances as well.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective.