Wanderer of the Void

Hi.
I'm Leisa.
It's been a while, hasn't it?
A long while.
My last blog entry was a rant and it was over on another one of my blogs that I had forgotten even existed. This entry isn't a rant....and it's firmly placed on a familiar writing platform to me. This is more automatic writing of no particular eloquence, breaking rules of spelling and grammar and sentence construction.
Once upon a time I read the blog of a woman and her four daughters who, after an unspeakable tragedy, wandered from place to place, exploring, connecting, re-organising their lives into some form of random structure. I used to envy them, wishing I could just move around from place to place, not needing a base but just free to move wherever the wind blew, connecting with new people and places and things only to move on again.
Be careful what you wish for. It may come to you....but not in the way you imagined and not in the way you particularly like. I've been moving around from place to place for a number of years now and it's not fun. It's not exciting.
I am surrounded by so many beautiful people who I adore. I am performing and being sought after to work with. I am creating. I am being paid to do what I love. Sometimes I will do it without being paid because I love it so much. I love the adrenaline. I love the feeling of creating something. I love the feeling of co-creating something. I love even the feeling of talking about possibilities even though those possibilities may never happen. I see more shows. I engage with more art. My mind is open to new things and experiences. I challenge old ways of thinking, formulate new thoughts and ideas.

I am so fucking lonely I can't stand it any more. I look down the barrel of a future I never imagined nor planned for and I am filled with terror. Absolute, white hot, soul crushing terror. I long for the end but lack the courage to follow through. I've done 18 years worth of therapy only to come out with an outcome I didn't hope for.

I divorced a person I still love. Do you know what that feel like?

I fell in love with someone who I knew right from the start would never stay. I was ok with this until I was forced out of the easiness that was us by someone who saw and still sees me as a threat.

I hate with a passion I never dreamed possible. It's so intense that it both terrifies and excites me.

I look in the mirror and I don't know who I am anymore. The characters on stage feel more safe to be than the one in the mirror. They are fierce, confident, assured, loved, affirmed, safe. The one in the mirror walks home in the dark on her own, gets into bed alone, rises alone, eats in silence, works and does it all again the next day....day after day after day.

The skin hunger has reached an unbearable level. Do I still exist if I am untouched? It doesn't feel it. I resent those that say...."but in spite of all the problems and trauma I still hold them and fall asleep." That fuels the hate. I pay to be touched. I pay for it. Shaitsu. Thai. All above board. But I hate the fact that I have to pay for it....and the hands doing it don't know me at all....but anything for some kind of grounding. Anything that tells me I exist.

I don't think I do really. I am simply the product of some higher beings insane imagination.

I'm also starting to hate the letter S at the end of words. There's a reason for this.

Inside yet outside

In the bubble.

I've been rethinking the use of my protective bubble of Protego Totalum.

It has served me well for a number of years now, and still does. I no longer look for the eyes that are looking, for the not so surreptitious smart phones taking photos. I don't look so I don't see.

I realise though that Protego Totalum has meant that I've missed out on connections; of looking into the eyes of other souls and seeing. More often than not, walking down a crowded street without eye contact has been the loneliest feeling.

So I've decided to take that barrier down - still not looking for the eyes that are watching, but looking for the genuine "I see YOU" connections. There has been a radical increase in the number of "Good mornings!" and warm smiles and gentle faces. My heart is warm and full.

Looking for the good is so much easier. You find more of it.

Protego Totalum still serves when I deliberately put myself into situations where the idea is that you invite people to watch and observe. As I concentrate more on my dance practice and my desire to be an artist, these situations and opportunities are becoming more frequent. I started a dance class on Friday with a friend; one where moving by instinct and with intention is the focus - no choreography, pure flow. We sit and observe each other from the side.

At first I was terrified. My fear of being observed, watched, maybe critiqued was triggerd on a large scale and my first instinct was to bolt for the door!. "Leisa you are pretending. You are not a real dancer. You are shit!" screamed my inner critic, but then I stepped out there and just let it go and followed the dance and it led me places I didn't know existed. At that moment I was actually right there in the Protego Totalum bubble where I was safe and warm and protected and yet totally able to let people see.

I sat on the sidelines and watched and witnessed those beautiful moments in others where you see them find it, and you're able to breathe and say, "There you are! I see you!" I love those moments. They're pure joy. Wonderful to see in a stranger, pure delight when seen in a friend.

I've decided to take risks and sign up to new things and explore interests that once upon a time I would've been too afraid to pursue because the thought of being so exposed in a group of strangers was terrifying. When I've faced the terror and done it anyway I've found it's not so scary after all. Most of all I've found joy and connection with other beautiful souls. No strangers. Just friends I haven't met.

I'm getting proud Stella! I'm getting proud by practicing every single day. I wish you were here to see!

More classes, more workshops, more exploring.

There's a whole world out there beyond the bubble.

Life Lately

Photo taken from a session at Weave. Credit: B N Karim

Silence on the blog front. I'm just going to write this as is.

Over the past six months I have had both the best times while living through the worst time of my life.

How contradictory is that? How can that even happen?

I can't even explain it myself. Right at this very moment my body and my mind are trying to reconcile those two truths - being in the worst time of my life while having the best time of my life.

My health has been terrible. I got the 'flu in about.....August I think. I'm not talking about a cold. I'm talking the 'flu, where even my skin was aching and I got this racking cough that sometimes threatened to crack ribs. Some would say I was trying to cough up a lung. 

Despite a recent chest x-ray that gave me the all-clear I am still coughing.....and it's the middle of November. I've only got myself to blame. I just kept on going....because there were too many things to do. I didn't do what my body needed me to do. I didn't rest. I didn't rest because there were opportunities that presented themselves where I got to finally do what I've dreamed of doing for as long as I can remember.....and I didn't want those opportunities to pass me by. I am, after all.......almost 50.........(shhhh.........I didn't just say that!)

But that's not the worst thing. And that's not the reason I lived both the worst and best times of my life.

On October 14 I got a phone call that a mother never wants to get. One of my children was involved in a serious road accident.

I don't want to go into the details, because that's their story.......but after an extended stay in hospital where bones were put back together and other issues were resolved, they are home and physically doing well.

They dodged yet another bullet. We all did. Sometimes the impact of that still catches me unaware. People say to focus on the fact that the worst didn't happen and they are well and are on the way to recovery...and for the most part I can do that.....

...but there are times where my mind heads back to that night and the full realisation of things hit and I realise what a bullet we did actually dodge. I haven't yet processed everything officially with the people I need to see. Part of me is scared to. Everything just sits there under the surface and I suppose it's the reason for my current state of.....drift and disconnection.

As all this was happening I was involved in a show with Weave Movement Theatre. We were in final rehearsals for our two week season that had been scheduled for months.

Some may call me crazy, some may even think that it was as though I didn't care, or that I wanted to escape.....but I didn't pull out of the production. I kept going.

For the first time ever....I also took care of me....in some strange way.

It was the best thing I could've done...even though I was so very exhausted. Over a month I possibly slept no more than three hours a night. I ate breakfast and then ate sporadically. Over the course of two days following the accident I lost two kilos. I'd get up and go to the hospital. I'd spend time at the hospital and then go to rehearsal. When the season started I'd alternate between the hospital and the theatre, going home to shower, eat a little something, catch a few hours sleep and then head out again.

It sounds torrid......but during the worst time of my life I was having the best time of my life.

How does that even happen?

I think being in the show actually saved my life.....or at least my sanity. I felt as though I was living two lives. There was life at the hospital, where I'd watch numbers and feel scared, feel white hot rage at the circumstances that had my beloved in there and all I wanted was for her to come home and be ok. I was filled with anxiety.

Then I would get to the theatre.....and go on stage under those bright lights and the smoke machine and the plastic bags and the costumes and the pumping music and I'd be fully THERE. Nothing else existed. Everything melted away and I felt centred and strong and grounded AND I KNEW EVERYTHING WAS GOING TO BE OK. For those 75 minutes I knew it was all going to be ok. My daughter was in surgery while I was performing in our Preview show and for those 75 minutes I felt safe...and I knew she was safe....but the minute I stepped off the stage and the preview show was over I was in Mum mode. I got out of my costume and high tailed it to the hospital and spent the next few hours in the waiting room.....pacing....pacing....pacing. She didn't get out of surgery until well after midnight.

The performance kept me sane and focused.

I was also having the best time of my life because for a couple of months - with rehearsals and then the season - I was part of something. I felt a sense of connection and community. I think that's what I love so much about being a creative; that you band together with a whole lot of other creative people to make something bigger than all of you - something that you all bring together and share with MORE people. In dance and movement there's also an element of trust that is shared with each other. I have to trust *this* person enough to know that when they lift me and then whip me around their shoulders I am going to be safe....and that THEY are going to be safe doing so.

Being a part of the cast meant that for those few awful weeks I felt safe and nurtured. There were arms to hold me when the terror threatened to take me away, there were laughs to be had, people to get to know and connect with and relate to. They all became my safe place; my family. We had rituals that fed into my need for life to be safe and predictable - presetting the props and costumes, warm up, cast pre-show pep-talks and yoga with dirty feet and plastic bags.

I miss all that.

I dreaded it ending. I still hate that it ended. I just wanted to keep on going and take it on the road - despite the fact that one of my fellow cast members said that it would be like "herding cats"!

I hate that I connect so much, because the emptiness after it ends is almost too much to bear. I've always been that way. With SSPA I would get "Post camp/convention blues" for MONTHS. I haven't changed much.

Despite the fact that I have other exciting projects in the wings, leads to follow, events I've said yes to and things that may yield hope and promise of a life direction I've yearned for since I was a little girl....I feel empty.

I go home to an empty house....well, apart from the dog.

I openly admit that right now I hate this single life. I don't really know how to do it. I'm practicing...and there have been people about lately who have been kind and patient and indulging as I have tried out my single legs. Does that even make sense? I surprise myself by saying yes to invitations to events where I know nobody except the person who invited me. I surprise myself even more by having 30 minute interesting conversations with random people at a bar. I realise that I have held myself back over all these years....worried about things I didn't need to.

Today I am finding it hard to have hope. I keep asking myself, "Is this all there is for me now? Having all these amazing things happen and yet still going home at the end to my dog?" I don't want it to be this way anymore. If going through the best time of the worst time of my life taught me anything it was that I am ready to move forward.

I just don't quite know how to do that.

Clowning around

I was asked to be a parent speaker at a conference for The Humour Foundation last week. If you don't know what they do, go to the website and have a look, but THF is responsible for the wonderful work done by the Clown Doctors and Elder Clowns. I was asked to be a parent speaker because Clown Doctors have been a part of our lives since they first careened into the Royal Children's Hospital many moons ago.

I had such a lovely time at their conference. What a wonderful bunch of people! I felt so welcomed, so at home and so grateful for the wonderful bunch of human beings that bring so much joy.

My speech made the clowns cry....and they gave me a standing ovation. I broke the clowns, people!

After my speech they made me an honorary clown!

And then we had a raucous game of Bogan Bingo. Folks, you have not played bingo until you've played Bogan Bingo with a bunch of clowns!

The following is the transcript of my speech.

Hi everyone and thank you for having me. Yes, I am Leisa and I am Mum to four now adult children – Sarah is 29, Chloe is 26, Tim is 25 and Riley is 20.

At first when I was asked by Jo to come and speak I didn’t really know what I was going to tell you. I have no words of wisdom to impart and know nothing about clowning other than the fact that my children can tend to get highly embarrassed with my antics down at the local shopping centre – groovy dancing in the aisles, lip synching to the music they play over the PA and having conversations with automatic tellers.

So….I’ll tell you what your impact has been on our story.

The Royal Children’s Hospital has been a part of my life, our lives, for as long as I can remember. I went there as a baby, when I was six and again when I was 14. I was fortunate not to experience any complications in regards to my condition so my own visits to the hospital were few and far between, however my memories of being there are seared into my brain – and not necessarily in a good way. Appointments and treatments didn’t seem as child focussed or holistic – and of course back then there were no such thing as Clown Doctors who I am SURE would have made my visit a whole lot more memorable in a GOOD way! In the 1970’s the focus seemed to be on the clinical side – diagnosis and symptoms and wanting to know if I was reaching all the expected milestones rather than who I was as a person.

I’m glad I didn’t go there too often.

Most of my dealings with the Royal Children’s Hospital were as an adult – as a mother. Our first visit was a prenatal visit in 1986 and then became regular occurrences after the birth of our first daughter back in 1987.

We never expected that the Children’s Hospital would become such a big part of our lives. As you can see, I was born with a form of dwarfism – the most common form known as achondroplasia. My husband at the time was also born with dwarfism – a different type to mine. Both of us enjoyed relatively healthy childhoods with very little or no medical or surgical intervention. When we decided to have children we had no reason to expect that our children would not have the same experience.

It didn’t work out that way.

The Royal Children’s Hospital became a big part of our lives for almost thirty years. In the early years of raising our children, every few months we would spend an entire day at the Children’s as we’d have multiple appointments at several clinics. You name it, we’ve been there – ultrasound, x-ray, MRI, medical photography, neurology, neurosurgery, bone dysplasia, genetics, spinal and scoliosis clinic, respiratory, urology, encopresis, physiotherapy, Day Surgery, the Operating Theatres, Recovery, Inpatients, Outpatients and the dungeon – which is what Sarah used to call the room where they’d make her spinal brace.

We used to know the old hospital like the backs of our hands and I used to joke that we’d been almost everywhere except Intensive Care.

It wasn’t such a joke when we ended up there too after a frantic dash to Emergency one morning.

In the early days of our life at the hospital we learned the waiting game, and that appointment times were only guidelines. Your appointment may have been scheduled for 9am but if you were seen before 11 it was a good day. Back then PAGERS for parents weren’t even something considered. You get a PAGER now if you get tired of waiting and want to wander off and play in the playground or go and look at the meerkats! LUXURY!!!!

No, back then it was sit and wait – and over the years we learned to prepare for a day at the hospital. We armed ourselves with snacks, drinks, books, art supplies, toys, activities and changes of clothes. It was like packing for a weekend away! We learned to wait – and I guess that’s why they call us patients – because you learn to be PATIENT and wait your turn. Over the years I would people watch and learned how to pick a NEWBIE from a mile off. After 15 – 20 minutes waiting they’ll get up and enquire at the desk, mentioning the time of their appointment and the length of time they’d been waiting. I’d chuckle to myself and say, “There’s a new one. Sit down love. They’ll get to you…eventually…”

I don’t know when we first encountered the Clown Doctors doing the rounds. I know I had a few kids by then though and was a well-seasoned and tired hospital parent.

There were a group of irreverent clowns careening down the corridors towards the lifts – making noise and merriment, commenting about silly things, making jokes with children, parents and staff alike and bringing with them an element of fun. They stopped and talked with us and I specifically remember Dr. Peg who was blowing bubbles and eating them as they floated down, telling the children that they tasted like strawberries. She then became distracted and started rummaging about in her coat pockets. She pulled out a sample bottle, containing yellow liquid.

“Mmmm….!” She said……”Urine sample!”

And proceeded to drink the lot in one gulp!

Hospital visits, for me at least, became a lot more fun.

When I was preparing to speak today I decided to do some research and ask my children for some of their memories of the Clown Doctors – after all, the children are who you’re there for, right? It’s a CHILDREN’S HOSPITAL so the focus is on children, I would assume.

Each of them told me that they remember the Clown Doctors being there, they remember talking and laughing with them….but they were so overwhelmed with everything that was happening to them that they found it difficult to focus and fully engage with them. Their thoughts and worries were focussed on their wonderings about what was happening to them and listening out for the one word they dreaded the most – SURGERY.

But please don’t think your antics were in vain. They weren’t. Please don’t think your spending time with is was wasted. It wasn’t. You helped enormously.

You helped me – their mother. And I wanted to let you know how important that was and is – helping the WHOLE family, not just being there for the kids – for although the actual procedure or surgery or condition is happening to the child and the focus should naturally be on them, the situation is affecting the WHOLE family.

And a Mum needs to be there for her child – and the other children too if there’s more than one. Yet sometimes – often in my case – she becomes so overwhelmed with the enormity of what’s going on that the relief of the Clown Doctors coming on and easing some of that tension…..well……it’s invaluable….and so healing…..even for the mother.

Honestly, after interacting with you, engaging in your silliness and sharing a laugh I felt a little more relaxed and ready to continue supporting my child.

So, I wanted to say Thank You.

Thank You for being there.

Thank you for bringing your brand of silliness that helped so much in lessening the tension.

Thank you for prescribing a truckload of chocolates for a four year old girl who was waiting to have both her legs surgically broken and reset with pins and screws and a wicked looking frame that we learned to manage.

Thank you for helping me learn that to cope with the trauma of the whole thing we needed huge doses of fun and silliness along with the midazolam, the diazepam and all those other drugs ending with PAM.

Thank you for listening for heartbeats in foreheads, and elbows and knees and big toes.

Thank you for trying to climb IV poles, running away with wheelchairs and looking at charts and telling kids that they had the biggest and smartest looking brains you’d ever seen.

Thank you for coming to see us after we had just endured the scariest and most horrible times in Emergency – where we went right to the edge and came back again, where people worked intensely and quickly, where I heard words I didn’t want to hear, saw things I didn’t want to see and was possibly more confused and terrified than I’d ever been my entire life/

Thank you for your gentle and beautiful brand of humour after we transferred out of ICU and back onto the ward. Your presence was so calming and reassuring. You broke the tension. You brought back smiles and giggles. It was your presence that assured this mother that things were OK – that the terrible night we had endured was over and we were back on the road to recovery. All you had to do was be silly. You blew raspberries on the windows, you knocked things over you juggled random things and then you flattened your faces against the window, making my girl smile the most beautiful smile in the world.

Your presence at the hospital is such an integral and important part of hospital life. You bring life and fun and silliness to a place where sometimes people can get lost in uncertainty and fear. You calm nerves, bring distraction, dissolve tension and help us all to remember that life is good and silliness and laughter is a vital part of getting better and healing.

All my kids are not kids anymore and they have graduated from the clinics at the Royal Children’s Hospital and attend adult clinics at the Royal Melbourne and Monash. They’re all responsible for their own medical care now and they do it on their own. This Mama has had to learn how to relinquish that “control”.

However I did accompany one of my daughters to her visit to the Spinal Clinic as an adult at the Royal Melbourne. It felt as though we were at square one – starting all over again. The building was unfamiliar, we were unsure of where we were going, the corridors were darker and the walls were plain and missing all the bright, happy art work we had been accustomed to for so long. We felt nervous and small.

And one of us commented……

“You know what this place needs? Clown Doctors. I’d feel so much better if Clown Doctors were here!”

And it was in that moment that I realised how important you guys are. You really are.

So thank you.

From the bottom of my heart, thank you for being there.

My darling girl.

Maya earlier this year.....at our most favorite place in the world.
27/10/2007 - 14/09/2016 

My darling girl

My darling girl

You're all that matters

In this wicked world

All that matters

All that matters 

My darling (girl)

My darling (girl)

All of my sunshine

And all of my joy

You're all that matters

All that matters.

Well I can't stop the pain

When it calls

I'm a man

And I can't stop the rain

When it falls my darling 

Who can?

My darling girl

My darling girl

You're all that matters

In this wicked world

All that matters

All that matters. 

My darling friend

My darling friend

All we've got going

Is love in the end

All that matters

All that matters.

Lyrics by Mark Knopfler.

Last Wednesday - September 14 - I held my Maya and sang to her as she crossed the Rainbow Bridge. 

I told her how much I loved her. I told her to go and find Lucy and run on the beach. I told her that I'd go to the beach and feel her with me.

I held her as that thundering heart stilled and she was filled with peace and my own heart broke and shattered into a billion pieces. 

I wrapped her up and took her to my sisters place and buried her near the dam, under some trees and camellia bushes that were blooming in beautiful pink shades. I placed a stone at her head. My beautiful nephew will be making her a better marker soon....

My darling girl found her way into my heart when I first met her in November 2007. She chose me. She plonked herself on my knee that day and kind of said, "You're my Mum. I know you'll love me just as I am." She knew I needed her as much as she needed me. 

And on the day she left she let me know it was time to let her go, as hard as that decision was to make. 

I will miss her forever....my little shadow.....

My darling girl...

When it comes from within

I've been thinking about this post for a week. I've written it several times in my head. It will possibly come out on the screen nothing like I planned in my head...but that's ok. Maybe this is the right telling.

Last week someone called me the M-word. In itself I guess that's no biggie. I mean, it happens. I get annoyed, I move on.

But this one came from within the "disability club" and it was deliberate. This person knew my name - my actual name. This person looked me in the eye as I did something kind and said, "Thank you little midget....oh, I mean, Leisa."

I arked right up. I didn't yell, or scream or get obnoxious, but I felt the hackles rise and I told him that there was no way I was going to stand for it. It was rude, mean and the same as calling someone the n-word. He said it was a slip of the tongue. I told him it wasn't. He knew what he was saying.

After the incident I pondered for a while. Would people have thought I should've been a little more lenient because of the type of disability the name-caller had?

My answer is no. I respect my new friend as a person, a fellow human being. I expect the same courtesies from him as I do the rest of the human race. Just because my friend has a particular disability doesn't give him an excuse to be rude because, "He might not know what he's saying." He knew exactly what he was saying and he needs to know it's not on in the same way everyone else needs to know it's not on.

I don't believe in rules for us and rules for them.

I have to admit that I was hurt. I thought they would have known better. He too would have been subject to obnoxious words used to describe his condition over the years. Back in my day people with his condition were called all sorts of things that were "acceptable" back then but are totally inappropriate now.

Back in the day the M-word was once the moniker they assigned to people like me. Not anymore. I won't take it from anyone.

These are a few (one) of my favorite things

Make way for the swans!
Image source

When I drive in to work my favorite part of the drive is around Lakeside Drive in Albert Park. Drivers have to be alert when making their way around that lake as there is a large population of Black Swans, as well as many other water birds.

(It's one of the big reasons I am so anti-Grand Prix!)

The speed limit around the lake is 50kmph and I'm pleased to report that most Melburnians seem to keep to that limit - and for good reason too. The swans get right of way in traffic - and by the way they stroll across the road you have every reason to believe that they know they own the place. They take their sweet time just waddling across, stopping to check out the scenery or perhaps wondering if they really do want to cross the road after all. Meanwhile, traffic banks up as they make up their minds and make their way across.

For some reason, I don't mind just sitting there and waiting for the swans. I don't even care if I'm terribly late for work. The swans are a bright spot in my day and serve to remind me that there are more important things to care about in this fast world.