The Business

I love the Flight of the Conchords.  Whenever I hear the word ‘business’ I want to just sing this song:  “It’s Bidness Time”… tee hee.  Here’s the song, because it makes me laugh so much.  But the business I’m talking about today is a very different kind…

The business of living is the opposite to what I have always thought. We think we know what this life holds for us. We’re that arrogant… or that foolish. We let the past and how things have always been build a logical picture of what will be. As if this life has a formula that makes solid, mathematical sense. Except it never does. Life’s twists and turns are complex, unpredictable and often quite weird. Less maths than chaos.  Less logic than creative. But we persist in thinking we know what’s coming. If only we could use that belligerent belief as a more positive force! But we don’t. We know better.

We map our futures and determine the course of our days as if we’re in charge. Pah! You know how it goes… because this happened, that will happen… because I’m this kind of person, that will never happen… because I’m doomed to failure I will fail… because nothing ever goes right for me… because our family genes are messed up… because good things only happen to other people… because that doctor said I could never… because there is only one possible pathway  (as if there is a sat-nav for the soul!)… because you can’t make a silk purse out of a sow’s ear… because. Just because.

And a thousand other silly statements we make to ourselves. A daily manifesto of negative expectations. Have you thought about being a little less human about it all? I’ve been trying lately to just stop analysing. To stop telling myself how it is going to turn out. To live in this moment instead of the next, or the last. I guess it’s part of the letting go. Humans are so expert at making meaning out of experiences. We test our hypotheses all the time with self fulfilling prophesies. Limiting ourselves based on what we know. But what about all the things that we don’t know we don’t know? The infinite combination of possibilities outside our ken?

A girl I have talked about a lot on this blog is Michelle Roger. I rave about her because she is truly wonderful. When I was lost in my diagnosis, her blog lit the exits out of my spiralling mindset. She’s been battling Dysautonomia for so long, she’s given it a name. He’s the unwelcome Bob, who lives with them. He’s an arse. He gives her jip. You can find her blog here. And even though her case is severe and complex, Michelle keeps doing the things she loves; anyway. She is a gifted writer who recently won a mentorship with Writer’s Victoria. She performed one of her pieces at the Emerging Writer’s Festival last year, and again this year. She’s been published. She carries on, and takes opportunities, even when most bystanders would say “how are you going to manage that?”. Somehow, that’s how. Somehow, anyhow. She’s a woman I admire. She’s a modern day Frida, making her art from the truth and pain of her experience. And she’s funny too, if you like a bit of the quirky/classy/smart, you’ll love her.

When I had a phone call yesterday from Vivien’s Modelling Management, telling me they’d like to sign me, and that 62 Models, here in New Zealand would too, my little brain expanded a bit. What an incredible opportunity! A whoppertunity! It’s so exciting to think that what I am, what I have; all of me, might be useful in a different way to what I thought. It aligns with my values around diversity, and being able to find the work that works for you. It gives me work in short bursts, with opportunities to recover in between. It will bring income back into our home. And one day, it might even be a platform for more awareness. A thought that surprises me. I never imagined this kind of thing. It was outside my experience and beyond my self-belief. I didn’t know that this opportunity could happen for someone like me. It wasn’t in the plan.

So. How will I manage? I don’t know. I just will, somehow! I’ll be picking the brains of my friend Helena, an established model friend who is also a Dysautonomia chick. I’ll take the advice of Claire, who had a classic response when I asked my friends that question yesterday. I am so fortunate to have a group of gals in my Dysautonomia community who have become very important friends to me. We chat online; they know all the ups and the downs of my journey, just as I know theirs. They get it all, and they are resoundingly positive. It fills me with good cheer. Claire said:
“-Silly! You’ll do it the way you do everything else – with a smile, kick ass attitude, and much complaining to us, about how fucking hard it is…” haha. Yep. I think I will. My girls have got my back. How much joy like-minded souls bring to this life. Solidarity and sisterhood. It’s important everywhere you go.

Last year I wrote a piece about my indomitable Granny (Her Stellar Career). It’s a good read if you have been feeling like your dreams are out of reach. She knows a fair bit at the ripe old age of 93. When I told her about this modelling thing, she twinkled and said “Dear, would you introduce me to them so they can sign me too?” 🙂  I think I’ve been learning her lessons. Because instead of sitting back and feeling like this life has passed me by, even though I might be forgiven for doing that, I am taking action. Like Michelle. Like Joyce. Getting busy with The Business of Now.

How are you at living in this moment?
Do you worry a lot about the future?
Do you think you know what it holds?
Let go a bit.  Let go and let life take you somewhere you never expected…

Michelle Roger: All the Feelings

Michelle was the first blogger whose work I read that wrote as if she was living inside my own brain. I found her blog before I fully understood what was wrong with me and I remember devouring post after post until I had finished reading her entire site. It’s a big blog too, Michelle’s been writing for quite some time!  Her posts were funny, irreverant, authentic and informative. I laughed myself silly, I cried, I wondered and I thought about things. She wrote about the issues no-one else seemed to talk about.  She made me want to write myself. I am beyond honoured to have Michelle guest posting on my site today.  She’s my blogging hero.  Here she is discussing the importance of being able to express even the crappiest feelings. I think this post is really important.  It originally appeared over on Michelle’s blog here.

Meet My Peeps

I’ve had a bit of an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it’s difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I’ve noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk it’s really rubbed me the wrong way. I’ve found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I’m all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don’t exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong, is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it’s tough and you might as well have said, “on my weekends I enjoy sacrificing small furry kittens to Beelzebub”. That is where the crazy lives. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it’s not okay in the face of the overwhelming positive brigade.

Say 'it's tough' and you might as well(1)

Sometimes what you need is one safe place to say it’s not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don’t need solutions. We don’t need to be told that we should stop being so negative. That we shouldn’t share. That we should always try to find the positive. Some days you simply can’t, AND THAT’S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same head space as we are.

In psychology there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or it’s lack, can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has it’s place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don’t need. We have a range of emotions for a reason and each have their place. We are all in different places in this illness journey and we can’t expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven’t experienced in a long time. My bradycardia was the worst it’s been in….well, to be honest it was probably the worst it has ever been. I experienced all the crazy scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabalised somewhat I realised I was over it. Really over it. I’ve been sick a long time. I’ve had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn’t scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone or crazy. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it’s place. Today I can laugh and smile again. I made it through. Today’s emotion losses much of it’s salience if it’s not seen alongside the darkness of last week.

Living with illness is a crazy ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don’t exist or minimising another’s experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that’s one burden we can change.

-Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

Distance Vision

Two glorious days.

A ribbon day; discovering my love for plaiting horse tails, watching the school team compete, seeing the grins on the faces of each rider, the immense pride as a ribbon is tied around their pony’s neck. Noticing that the ponies feel pride too, a slightly rounder arch to the neck, prettier steps, a job well done.  The company of good people, shared food and the smell of sweet hay.  A daughter, reading horse encyclopedias after lights out… long after she should have let her exhausted self go to sleep.  Such a special day, and I got to be there, standing for hours, because I could.  My friend asked me if I find the heat difficult to deal with.  Yes, but not like before.  My very cells zing with some kind of happy elixir as I think that thought.  Not like before.

And today, my two little riders out on horseback.  Me, sitting on the grass, breathing in the country air and swinging my head from arena to paddock to take it all in. There is such a joy bubbling up from within, I can’t contain it. I smile at everyone and feel like hugging them all.  They are all so precious. I see all of their individual facets like I am marvelling at gems I have not seen before. So beautiful; our humanity. So breathtakingly gorgeous.

Driving home I see the lines of traffic snaking out in front of me along the highway. It’s busy. We’ll be a while. I turn up my daughter’s new CD and relax into the beat. Megan Trainor, it turns out, is not all about the bass. There is much more to that talented young lady.  I listen to this song, ‘Like I’m Gonna Lose You’ and the tears spring up behind my sunglasses.  It’s beautiful.  It’s how I feel about all of this.  The beauty of people, of life, this way.

And I notice the clouds in the distance, glorious in the late afternoon sun.  I see them, so far away, and realise that seeing things far away is not something I am used to doing.  My long range view has returned; I am seeing the breadth and depth, the future of life. I am loving it all, because really, what more can a heart do, filled up with the beauty of all of this?   My world is expanding in all directions.  I exhale and let the tears track new lines, down my cheeks and across the corners of my smile.

Do you know how beautiful you are?  People?  World?

Screen Shot 2015-02-28 at 8.17.24 pm

Help, I’m Falling Apart


…the glue that holds our parts together, isn’t holding me!

One of the all time favourite picture books in our house is Tedd Arnold’s “Help I’m Falling Apart”.   It’s a funny little story about a boy who notices strange things happening to his body.  He is horrified! When his parents finally cotton on to what is causing all the distress, they sit him down and explain what bodies do.  His dismay turns into relief.  He is normal.

 

Tedd Arnold Penguin Books 2000
Tedd Arnold
Penguin Books
2000

I so wish the shenanigans my body has been up to were normal. I’ve been trying for a long time to have someone help me identify the cause of my Dysautonomia so I can treat it, and if we don’t find one, accept it.  I feel like we are closer to an answer than we have ever been. As you know, I can’t rest while there are still possibilities that might explain and inform. Something that might improve our lives!  I say ‘our’ because when I am well, my whole family will have a better life. Whatever works for me works for the good of all of us. I want to be ‘normal’ again, that’s all.  I’ve been looking for someone who can explain why my body does all these abnormal things.

You might remember that earlier this year I convinced my General Physician to refer me to an immunologist.  I really wanted to have a conversation with someone who had a passionate interest in auto-immunity.  I have always wanted to believe my problems are autoimmune in nature because then there is a treatment pathway.  I guess it is only natural that I want something that can be treated.  That’s human, right?  If I don’t have an auto-immune aetiology and that has been proven, then I can accept that and carry on with other investigations.  If all of them prove fruitless at least I will know that I didn’t leave a single stone unturned.

Today was the day of that appointment.  The immunologist, Dr Ameratunga was outstanding.  He got stuck straight into my medical history, listened carefully to my answers, took my assorted bits of paper with a promise to do more research.  And then he asked me if i would mind seeing another immunologist tomorrow who works out of his private practice.  The guy he wants me to see is a neuro-immunologist.  And just like that I am booked in to see him.  The neuro-immunologist has already seen my case and consulted on it from Wellington.  He works in Auckland one day a week. I am looking forward to meeting him in person so I can discover if there is anything further he can add.

And, I still have my little seedling of channelopathy hope perched on the windowsill of my mind.   How strange that after two years of languishing with no proactive assistance on all the other fronts, it looks like I am getting help with the other avenues of possibility too.  Lots of positive movement going on right now.  My head is hopeful. I wish it could translate some happy juju to my body.  Sometimes, even one appointment away from home can be too much for me.  Today, I can barely swallow my mouth is so dry.  I am typing with my eyes shut because my pupils are doing weird things. It is disturbing having my eyes open. Once, during a childhood argument my brother called me “A POO WITH EYES IN IT” (best insult ever).  And that is exactly how I feel.  Like a large lump of amorphous refuse. Blinking at the assault of light on my eyes, horrified by the discovery that I am in fact, a poo.

Before I left his consulting room, Dr Ameratunga said “we need to solve this”.  And I cried.  No tears though, they don’t seem to be working today.  Just that chin tremor moment.  I hope he didn’t see. It’s a big rollercoaster ride and finding caring doctors is pleasantly overwhelming. By the time the hubster and I were back in the parking lot, I wasn’t the only one with a tremoring chin.  “What a good morning!” he said, incredulous.  I smiled through my fog. I so sometimes wish I could choose when to have energy and vitality and enthusiasm.  If I could, I would have chosen that moment.  Because that’s all good stuff, right?  I’m making progress on a few fronts.

I just feel too exhausted to celebrate.