Life. Oh. Life. Get off that straight ol’ line.

You know that scale that you measure life on? No, not sure?  Here are some:

The bathroom scale.  labelledpromoofftheleash

The work performance scale.

The pain scale.

The romance scale.

In my comedy show “Labelled” I discuss that straight line we imagine…about where we “should” be…and put it away…

Check out this 19 seconds of my show – Little Glimpse of Labelled – about the continuum of life explained by a neuro-divergent comedian.

What if I said that straight line between where you are and where you think you should be doesn’t exist? What if it all is bit in-between? What do you think it would it feel like to be okay with being in-between?  Liberating is one word I would use.

What if it was all just twists and turns that lead us to where…well where we are now?

If you are having a “should of”, “could of” kind of day – 

Give yourself permission to just take yourself off that old straight line…

You are enough.  

Activism and Stress

Okay short post (finally!).  I have been an activist since as long as I can remember.

But it doesn’t bring me stress.

I find that often people confuse my activism and seeking answers for injustice as stress.

It’s not.  It’s easy to confuse passion with stress.  But for me, passionately caring about issues is not stress.

“Working hard for something we don’t care about is called stress; working hard for something we love is called passion.” -Simon Sinek

For me it is stressful to go about in the world in ignorance and overlook injustice.

ACT-tivist.  Talking publicly about difficult topics is a form of activism.  Action rather than ignorance and releases stress for me – it does not cause it.   It brings me hope, happiness and satisfaction that I have not just stood by.

 

The Girl who Cried Blood Pressure and Gender Bias in Medicine.

That’s the Red Sea in the featured image.  When I was in my 20’s I couldn’t have possibly imagined ever being able to snorkel off the coast of Egypt.  But at 47 I did.

In 1993, at 22 I nearly died in the sea.  Off the coast of Noosa, on the Sunshine Coast.  My scuba dive operator (I was a Dive Master trainee) was so obsessed with completely the dives for a course that he did not think safety was much of a concern.

The result was two students who kept floating away and me chasing them.  I got the bends; a nasty combination of neurological and musculoskeletal forms.   Before I go any further…no, I didn’t “come up too fast” – it’s much more complicated than that and can take hours to experience symptoms.  That’s Hollywood bullshit.

Ever since my life has been plagued by all sorts of health issues related to being in a hyperbaric chamber after a delay of 28 hours before I could get treatment.

One of the issues is uncontrollable blood pressure (BP).  No matter what I do.  I could sell my soul, strike a deal with the druids, have an exorcism or launder money for the mafia to pay for a black market heart transplant and none would work.

For years I thought that my BP was related to the neurological trauma of the accident and subsequent treatment.  A couple of doctors with some specialist training agreed, but invariably most doctors (both male and female) didn’t pay any attention to my concerns.

In the last ten years I have had it confirmed via two specialist doctors and a lot of testing.  There is nothing wrong with my heart – my brain (in the driver’s seat of controlling my blood pressure) has rejected the notion that I need reasonable blood pressure to survive.  *Damn you, brain*

It’s extremely frustrating to be told by the medical profession that you do not know your own body.  Try that for over 25 years, only to finally have your viewpoint validated in 2013 and 2018.

I’ve done everything to keep my BP at bay.  Most recently I had a virus for a few weeks and my medication for hypertension did not absorb, resulting in a hospitalisation.

When I go to hospital I am a bit of curiosity for doctors, but until recently that hasn’t been necessarily positive.  Most of them won’t get to meet a survivor of Neurological Decompression Illness (NDCI) in their careers.

This recent hospitalisation this past week was the nicest hospital visit (albeit under awful circumstances) since like…forever.

I’m used to blank stares from nurses and doctors when I mention the NDCI, blood pressure and my constant battles with chest pain.  But this visit this did not happen.  In fact there was a great deal of knowledge about it and I was treated with respect – not suspicion or condescending disbelief.

The Huffington Post has recently brought up the phenomena of gender bias towards women as patients.  I found the article of interest about gender bias in the treatment of pain whilst sitting in a hospital bed.  I was going through what I go through every few years with the medical profession around the “mystery” of my blood pressure and associated chest pain.  It’s not a mystery to me, but hey…what would I know?

Laurie Edwards, in the 2013 NY Times article “The Gender Gap in Pain” writes:

The oft-cited study “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” found that women were less likely to receive aggressive treatment when diagnosed, and were more likely to have their pain characterized as “emotional,” “psychogenic” and therefore “not real.”

If you want to see the original study referred to above you can find it linked at the bottom of this post.

I know at times I have been referred for mental health services for describing the pain I experience as a post-bends patient, rather than take me seriously.  I even had one doctor refuse to take seriously dangerous blood pressure because he thought it was “emotional”.

Yet I can meditate and be totally chilled and still have massive blood pressure.

I am reminded of the time in 2009 when I meditated in the emergency room to prove to the young male doctor there that I was not merely “stressed out and emotional unnecessarily”.  I managed to drop my heart rate down so low he said he was “impressed” and yet my blood pressure stayed dangerously high.

He concluded that, at 39 years old and after years of arguing since I was 22 that I had no control over my BP, “that you clearly need medication”.

No shit Sherlock.

I did everything before the medical profession would take me seriously.  At one point I rode a bike 300km a week, went to the gym three times a week,  meditated twice a day, ate perfectly and lived only for my job and my young child.  I don’t drink or smoke, so that wasn’t a problem.  I didn’t have a life though.  And I still had fucking enormous blood pressure that resulted in chest pain and feelings of general malaise.  All of which I pushed through like the pain in the ass trooper that I am.

Since then I have just stood my ground, changed medications when side effects became a problem and changed doctors when they told me to try diet, exercise and other treatments for heart related hypertension.

I don’t have heart related hypertension – my heart is a fucking legend.  It has allowed me to trek 211km in the Himalayas at altitudes of 4600m no problem.  My heart has put up with average BP of 160/111 – 180/120 for extended periods of time because no doctor would properly medicate me.

This week my cardiac stress test result garnered the words “heart like a Mallee bull” from one of the doctors.  Because my heart could handle blood pressure of 240/140 during the stress test.  Gee…thanks.  Now let’s fix it so my heart and organs aren’t under so much pressure, eh? Yep, goodo.

Yet in the past,  I was often treated as though myself and my blood pressure machine was “all in my head”.  Interesting considering stress does not affect my shitty blood pressure.  It’s just shitty and between 150/110 and 190/120 on a daily basis.

This week a fabulous team at Alice Springs Hospital took all my concerns seriously.  I didn’t have to argue.  Wow. That was different.

One really cool young guy doctor knew a lot NDCI and reassured me that it was most likely that it had caused my struggles with BP and that it should be treated accordingly.

I was in hospital this week because it appears my medication hasn’t been doing what it should for the last 18 months or so.  I got a virus and for the last few weeks my medication wasn’t absorbing and I had bad chest pain and BP of 200/130.  I was admitted to hospital to sort it out.  It was scary.

But the result was that I finally have doctors permission to adjust my own medication dosage, with specific parameters, around my daily blood pressure readings.  Just like a diabetic does with blood sugar readings.

*HOO-FUCKING-RAY.* there is a little happy dance that goes with this…but I can’t replicate it in writing…

There is finally medical acknowledgement of what I have been saying all along.  I never had blood pressure until I suffered NDCI and now it is uncontrollable – no matter how much of a “good girl” I am.

I need to point out I am always calm when I present with massive blood pressure and chest pain, despite how distressing it is.  Why? Because from 2006 and 2009 they keep referring me as a mental health patient for being upset about chest pain – chest pain that I legitimately had because I had been getting around with massive blood pressure.

In case you didn’t know, carrying around really high blood pressure is shit.  I’m tired for no reason.  My ears ring much louder than normal.  I see a swarm of black dots.  Overy the years some doctors say that is typical with high blood pressure, some have said it’s anecdotal.

But, by fuck, none of those things happen when my BP is normal.  I know have so much evidence from the medical establishment that it is not “in my head” that it’s almost insane in itself.  But still I still have to explain that over and over again.

So now I work really hard not to feel or act emotional about my blood pressure when I present to a doctor, despite how crap I might feel.  I tend to get better response from both male and female doctors.  But the downside is that they then think I am exaggerating;  until they get the blood pressure machine on me and watch me over time.

Damned if you do, damned if you don’t.

So I suppose the moral of the of story is this: if you are female and experiencing pain, expect to be treated differently by the medical profession.  Be prepared for it and don’t tolerate it. 

Even better, if you find yourself having to explain the pain over and over again and it falling on deaf ears – don’t take it.  Print out the study The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain and shove it under their noses and asked to be taken seriously.  Then ask to see someone else and make a formal complaint.

Because a good doctor/s – like the team I had this week, they’ll listen and not treat you like a “malingerer”.

Don’t give up and don’t let any condescending medically trained poop treat you like a “hysterical woman”.  You are entitled to express that you are in pain in whatever way you need to (with the exception of abusive behaviour – that is never okay).  You are entitled to ask for help and to be treated with care and concern, not condescension.

Another way.

I’m currently transitioning out of a career I have had for the last 15 years into a new arts based one.

The move is from community service and anthropology, to speaking, writing and comedy performance.  It’s a big deal for me.  It’s the thing I didn’t do because I was young and believed what everyone around me said.

“Arts jobs aren’t real jobs

“You’ll never make any real money“.

Ironically these were people who would pay to be entertained while simultaneously running down entertainers, artists, writers.  But they didn’t want me in the role of an entertainer.

Now, I’m not sure what real jobs or money are anymore because in my experience real jobs and money have meant:

  • Stress
  • Stress
  • Stress
  • More stress

Arts work is honest work and is as real as you get.  I am reminded here of David Graeber and Bullshit Jobs.   Jobs created to maintain the status quo – i.e. keep the poor, poor, and the rich, rich.  Community service in recent years represents that – at least that’s been my experience of it.

You think you are doing something useful, but you are not and I am going to explain that.  I no longer feel that community service is honest in Australia. Sorry if that is offensive to you but this is why I feel that way:

  1. Successive government’s stripping away funding for human services.  So now you have to compromise so much that you get assaulted at work because you can’t provide a quality service on a shoestring anymore.  Government then blames the victims (the clients) when it’s them that are suffering the most and just in need of support.  Disadvantage is not a disease and it’s almost now normalised that homeless or jobless people will be automatically aggressive and we community service workers must deal with that or leave.  Which is what I will eventually do.
  2. Casualization of workforce.  Funding cycles are so tight and funding so limited now that there are really  no decent pay and no decent job securities attached to community service work.  There are a few, but even if you have a stable position, you don’t have a stable workforce to manage the rest of the programs.  And what workforce you have is so under-qualified or under trained because you don’t have the resources to support their professional development. 85% of your time as a manager is spent trying to get the workforce prepared to work with nothing in terms of resources.  Then you ask them to work with the most vulnerable whilst only being able to offer a partial service. It’s setting up people to fail.
  3. Hypocrisy and burnout.  Numbers 1 and 2 mean burn out rates are high.  Government hypocrisy is a major cause. Imagine sitting in a funding meeting for a vital human service in front of 3 government public servants who are paid collectively more to mismanage non-government contracts – more than the money you are asking for a team of 8.  They usually have very little understanding of the issues but dispense “wisdom” in true Sir Humphrey style.

So I’m going to make political statements through art forms.  I’m going to lift peoples spirits and assist the vulnerable in another way.  Through art, writing, comedy.  It can change minds and move opinions.

Community service for me is still part of who I am and it’s a while off before I can leave altogether.  But I don’t feel it is honest work anymore.  I don’t feel like I can continue to watch the hypocrisy.  I am not unaffected by it and it’s endless.

Maybe I will end up living in a cardboard box.  But it will be a well decorated one.

The GREAT FULL Heart

In my post yesterday – I talked about a grateful heart or even more so, a GREAT FULL heart.

I need to expand on this a little bit.  I aim to balance between difficult discussions and beautiful ones. I am a comedian as well as a writer, this blog uses humour in most posts, but overall it is meant to be “my mess in a message inspirational”. At least, I hope so.

If you go through the rest of this blog you see discussions about pain, loss, mental healthbrain injuries and other matters about recovering from trauma.

There are also posts about comedy, women in comedy, writing, hope and overcoming shitty stuff, travel and our senses, and love.

What do I like about gratefulness? I am changing some spelling here for literary effect…beware grammar/spelling police…

There is a direct correlation between gratefulness and people with great full hearts and happier, more fulfilled lives.  Go to any number of texts that I could list if you like…but I thought I would give my take on it.

  • Gratefulness leads to a bigger space for life.  A greatfull heart is much more likely to go and climb a mountain than complain about spending $5000 on a curved TV to get a better look at a mountain they think they cannot reach.  They are less likely to die on a couch in suburbia wishing they had gone travelling instead.  They’ll choose to enhance their life experience over living it through others, because they are inspired by the world around them.
  • Gratefulness leads to a bigger space for working with discomfort and overcoming it. The greatfull heart finds ways to minimise pain and measures ways to engage with the world in a way so that pain does not become an impenetrable barrier.  The grateful heart is pleased to be able to move – even if that movement creates pain.
  • Gratefulness leads to a bigger space for hope.  The greatfull heart is okay with working with issues that cause discomfort and the people that need great full hearts now, more than ever.  They do not care if the person receiving their energy is perceived as broken, lost, frightened, dangerous or considered diseased or dirty.  They do so without need for applause.  The result uplifts spirits and lives.
  • Gratefulness leads to less fear in the world.  The greatfull heart knows not how something might go wrong, but knows that from every wrong we can make something right. They will speak their truth and do not live in denial of the wrong in the world either.  They often refuse to be bystanders and are more likely to act to correct wrong with action.

Gratefulness = great full hearts.  Gratefulness goes beyond creating personal happiness.  Gratefulness creates positive change.

Dumping the bucket list in the bucket…

So many people are living for the rush of some idea of a future that isn’t grounded in the  right now. A future holiday.  A future job.  A future home.  A new smart phone.  And they forget to live in the meantime.

Like the ancient Pharaohs, it’s almost like a lot of people are stashing possessions for an afterlife – but in a twisted way that will just see them dried up, albeit pretty, corpses (maybe even before they die). Even the concept of a bucket list of travel experiences is used in this way, it’s not about enriching our experience through our lives, but towards some mythical end of life experience (which for many is too late).  I think we need to dump the idea of a bucket list and change it to the “Grateful heart list”.

In mentioning the Pharaohs, I mean no disrespect to Egyptian culture, I’ve just spent four weeks experiencing it and I love Egypt and the Egyptian people.  So the comparison between the Pharaohs lifestyle and modern Western materialism is very tongue in cheek of course.

Because folks, we Westerners are definitely not Pharaohs – late stage capitalism makes us more like consumerist addicted zombies.

I realised today that I haven’t had that kind of thinking for over ten years now and just how liberating it is to be free of it.

The irony is that since I freed myself of that kind of thinking all number of things I once dreamed about, happened.   Particularly in regard to travel and adventure (and on shoestring budgets too! I am far from wealthy in a material sense).

I do a running tally of all the “little” things I am grateful for every day, as much as I possibly can. This also means setting achievable goals for life’s experiences (like travel or study, not material things) that give me joy and a sense of contribution.  It’s all funded through meaningful community based work (in both community services and the arts) – work that I love (not dread).

I come from a family where travelling overseas was not common.  Not in my immediate family.  My Dad travelled to fight in World War II (he would be 95 his coming April if he was still alive) but for many of the generations before me, they didn’t get to travel like I do.  *I need to add that when I travel, I do not do “tourism”.  I use responsible and ethical travel options, homestays, support local economies and try and keep my carbon footprint as low as I can.  I do not do checklists of places to “say I have been there” and try to avoid hanging around in “cliques of foreigners”. I spend time with local people and immerse myself as much as I can for as long as I can (usually four – twelve weeks).  

Basically for the past three generations in my family – they travelled to (potentially) die in a war, migrate to another country, or flee a fascist regime.   They then built a life for themselves and future generations.  However for me I had to abandon the things they prized once settled in a place to achieve a more privileged form of travel.

I don’t have a mortgage and I don’t aim to own the latest in anything.  Happily, willingly.  When I move house it’s two small cars worth of moving.  I could pack up tomorrow and be in whatever location I desire, still earn good money and still contribute to any community.

I realise I am very privileged in this sense. I hope that my contribution to the world will mean that generations after me take what I have for granted. That is indeed my hope.

However I don’t own much.  What I do own is:

  • A heart full of respect for other people and their culture/s,
  • A passionate desire to see the world find some peace with itself,
  • A sense of joy at the beautiful little things all around me each and every day,
  • An appreciation of nature and it’s gifts,
  • A wealth of great stories about fantastic places and people,
  • Language skills in six languages now (from beginner to intermediate),
  • An ability to problem solve and feel good about my contribution to the world,
  • A university education (again something my immediate family were not privileged enough to be afforded), and,
  • A life filled with intelligent thoughtful work, art, comedy, writing, regular travel and adventure.

I don’t own a bucket list.  I threw that idea out with the ‘before you kick the bucket” bucket it came in.

What I do own is a grateful heart.  Let me rephrase that another way too.

A GREAT FULL heart.