Memories of the medical kind

My dear friend Carly Findlay published an emotional post the other day entitled Feeling like a freak on the opposite ends of the spectrum. In it she speaks about the different types of staring and curiosity she receives - both from strangers in the street and also from the medical profession.

I guess in this way I have been relatively "lucky". I have the average garden type variety of dwarfism called achondroplasia. Although it is still rare, occurring once in every 15,000 to 40,000 births, on a scale of 1-10 with 1 being BORING and 10 being "OMG! This is a new one we haven't seen before!", achondroplasia would sit down the end of the boring scale. Yes you can have your nuances and there can be issues, but in many cases it's, "Congratulations Mr & Mrs X, your baby has achondroplasia! Take him/her home and love him/her, we'll see them often enough to take care of anything that crops up!"

Well....that's almost what my parents were told and I was most certainly told something like that when I asked, "What should I be watching for?"

As a child I really only saw the specialists three times. Once when I was diagnosed, once when I was six years old and then once when I was about fourteen to check up on my dicky leg. Maybe they would have liked to see me more often but we were in the country and, according to my mother I reached all of my milestones on schedule, was healthy, seemed to be well-adjusted (apart from being an anxious little thing!), so she and Dad had no reason to make the arduous journey into the Big Smoke to have doctors poke and prod and tell them what they already knew.

However, the appointment when I was six hasn't really left me with the most wonderful of memories; in fact it followed more along the lines of what I would imagine research consultations would be. There was the measuring, the weighing and the, "Well, what's she doing Mr & Mrs X? How's she doing at school? Does she have friends?"

And then there were the x-rays......

And then I was taken downstairs for a series of photographs......

It was all fine....until they asked me to take off all my clothes.

All of them.

My mother wasn't in the room at the time. She tells me that she had stayed behind to talk to some other doctor, or social worker, or someone.....but my Dad was with me.

I remember them asking me to take off everything and I helplessly looked at my Dad, not wanting to stand in this room of strangers in my Birthday Suit. I was six years old, not a baby. I was ashamed, humiliated, dreadfully embarrassed.

And this was back in the day when parents never thought to question doctors or any other figure deemed to be one of authority....so, after the doctor suggested that my father help me....he did.

And I stood for those photos....and I smiled for the photographer, because that's what you think when you're six - you have to smile at the camera - but I was so terribly, terribly scared and embarrassed; so much so that I blanked out the rest of the time there.

I'd always known that those photos were in existence. Somewhere in the back of my mind I was always aware of them. It wasn't until I was a mother of three children and we were all at the hospital for a check up one day that I saw them again and realised why six year old me blanked out the rest of the memories. That day when I was 25 we were all at the hospital also being interviewed for an article being written about a new computer database that would assist specialists make more accurate diagnoses. We were lucky enough to go into the lab where the system was and have a look at some of the contents.

I think I remember someone saying to me, "I think some of your photos are in here too!" They looked into the files and there they were....

Oh, my eyes were covered with the characteristic black rectangle that was supposed to preserve my anonymity (and they also did it to protect their own backs because no one had contacted me to ask permission to use the photos), but there I was. Six years old, looking nervous and scared and very, very exposed. Not only that, but the photographer had taken close ups of ALL of my body parts.

ALL of them.

And I wouldn't have been standing for all of them either.

I'll leave you with that for a minute........................

No wonder that little six year old blanked out the rest of the session.

To cut a long story short I thought about those photos for days....and ended up calling the hospital and having a chat with the Social Worker who had known me since I was little. I asked them to take the photographs off the database seeing they hadn't sought my permission to use them and I asked to have the original photographs sent to me. It took me a while to feel ok again.

When I became a mother, the memory of that day ensured that I was very protective about the amount and type of documentation kept about my children. Yes, they had photographs taken at one point, but I was present and ensured that they were appropriately covered in the right places. I have refused most research and only allowed their cases to be presented at conferences if doctors have assured me that they remain anonymous. Never have I allowed my children to be in a room full of doctors discussing their case. Ever.

In my files at home I have ten black and white medical photos of a little six year old girl. Her little mouth is smiling, because she's in front of a camera...but her eyes are not. She was scared and confused and so terribly, terribly embarrassed.

That girl is me.

Mind games of the mouse while the cat's away.

Ok...ok...so these are possibly hamsters! Drunk hamsters! Tee hee!

My personal trainer, Kara has swanned off to China for....ten days?

Lucky Kara! :)

Now, you would think that while the cat is away this little mouse is going to play. I mean, despite the fact that we have a month's program written up, who is here to actually check that I'll follow it? Oh folks, this thought has flitted through my mind on more than one occasion! Yes it has! Who would know if I followed the program or not? I could just say that I got up and ran a 10km or worked on my abs, or my core, or went to the pool!

No one would know!

Except me.

And that's the thing. I hold myself accountable. No one gets the guilts more than me if I don't actually do something I'm committed to. If there's a 10k on the scedule, regardless of the fact that my mind might protest and say, "Shhh! Only do 8k. No one will know. Eight kilometres is still a decent run!" I push on and do it anyway and at the end of the 10km I feel as though I have achieved something.

So I'm working on my arms and my abs and my legs. Oh my goodness! Death Jumps! I hate Death Jumps, but please give me more! Last week I ran a total of 23km and swam 2km - all in the program.

On Saturday, Kara has slotted in a 17km run.

S-e-v-e-n-t-e-e-n k-i-l-o-m-e-t-r-e-s.

I can't even pretend I'm not intimidated. I keep looking at that distance and feeling chills. Truth be told, I'm scared. I haven't done anything further than 15km since April. Actually, the fartherest distance I've done since then is 12km. Kara thinks I'm ready.

I realised this morning that I am letting my own mind defeat me. I've already decided that it's too far and too hard and if I keep on with this attitude then the distance will be too hard and I will fail.

Seventeen kilometres is only two kilometres further than fifteen - and I've done fifteen. I can do fifteen...so I can push on and do seventeen. I can think of the elation I will feel when it is done. That will spur me on. I plan to run the entire way, but there's also the option of doing it in intervals after 15km - say, 5min walking/10 min running. It's achievable.

These are the mind games of the mouse while the cat's away.

A-Z of Me - aka A Narcissistic Bit of Fluff

Hey! I'm not saying anyone currently participating in this little gem in the bloggy world is a narcissist! I'm just making that my title for the sheer fun of it!

There's a list of bloggers who have participated, including Jackie, Mrs Woog and Sam. Go over and give them some love, ok? Only after you've read this though!

So, without further ado, I present to you the A-Z (I'm thinking this is said A to Zee, rather than the Australian version of A to Zed!) of ME!

A - If you were an ANIMAL, what would you be?

A dog. Honestly, I find myself personalising the devotion my dog Maya shows me...and it scares me. I'm too loyal for my own good.

B - BOOKS - What's on your reading list?

I'm currently reading We Need To Talk About Kevin by Lionel Shriver. I'm only a few chapters in. I don't know how I feel about it at the moment. 

Next I will possibly read Face The Music by Paul Stanley and then Game of Thrones - A Storm of Swords. I've been trying to be diligent with my reading of actual books.

C - COMPULSIVE - about anything?

It's a compulsion that the sound level on the TV or in the car is a multiple of 5 - like 5, 10, 15 etc. Failing that, it needs to be an even number, but this is done very reluctantly.

I'm also starting to note that I have to put on my left sock and left shoe before I do my right foot. 

D - DREAMS - Do you dream in colour? Remember your dreams? Keep a dream journal?

I dream every night, although I don't always remember them, nor do I keep a dream journal. I haven't noticed if I dream in colour. I might try and become aware of that....and I do believe that's possible because I was dreaming the other night about a lynch mob surrounding our house (don't ask) and then all of a sudden I realised I was dreaming because I couldn't remember how the scene started - kind of like that scene in Inception where Leonardo Dicaprio's character makes Ellen Page's character aware that they were in a shared dream by asking her how they got to the cafe they were sitting in.

I do have recurring dreams - mostly about flying in planes and trying to get out of the way of enormous ocean waves. (this is a dream that has recurred since early childhood following an incident on the beach with my Dad)

(PS Since writing this bit I've had a dream about being at Dancing Ground and noticed that I was carrying a bunch of radishes that were definitely red and green!)

E - EATING - What's your usual snack?

Fruit, toast or crispbreads with tomato and cheese.

F - A few of your FAVOURITE things?

Running - of course
The beach/the ocean - swimming in it, walking along it, sun worshipping on it, watching the sun come up/go down....everything about it.
Crochet
Disaster movies

G - GIGGLES - What/Who makes you laugh?

Joan Cusack makes me laugh so much I almost pee my pants.

I simply love this woman! She also plays some amazing serious roles but she is a comic genius. I mean, that labour scene in Nine Months! How she contorts that sweet face into that crazed, labouring nutcase! It makes me lose the plot big time!

 I also love Carl Barron and Jimeon. Laughing until my face aches is one of the best feelings ever, I think!

H - What is my major HOT Button?

Haters and Trolls. Why? Why would you bother? If you don't like something/someone, there's the little X in the corner - please click away! Don't release your poison on someone just trying to live their life the best way they know how. How about dealing with your own stuff by doing some counselling, or some yoga, or a good, long run?

Passive-Aggressive comebacks/responses. Say what you mean! Don't sugarcoat your sarcasm!

Being micromanaged - you do your job, I'll do mine.

Gossip - please leave me out of it. I don't want to know, nor will I participate in it. 

I - I AM

I am OK - just as I am.

J - JOBS - What do you do? What have you done? What would you like to do?

I describe my current role as being a general all-round dogs body for an Arts & Disability Organisation. I'm the face you see when you walk in the door, the voice that answers the phone, fixer of photocopiers, stationery bitch, Phantom Dish Washer, organiser of food, interpreters, taxis, flights and accommodation.

I have been a wrangler of infants, (st)rangler of primary school children and a data entry chick. 

I wish so much I was a midwife! Or a doula.

K - Also KNOWN As...Aliases? Screen names? A nom de plume perhaps?

• Leisa
• Prowdy
• Neb
• Mum/Mama/Marmee/Ma/Mummy
• Hun

L - I LOVE

Him

Them

Life

Running

M - How do you feel about MEETING people? Do it all the time? Rarely? Parties or 1-on-1?

I have a bit of a soial phobia. Truly! I can come across as confident but I'm actually very shy. I mean, meeting Hugh Jackman and Peter Dinklage was terrifying and for days afterwards I wanted to bury myself in a hole from sheer embarrassment thinking I looked like an idiot. 

As I am a receptionist I am meeting new people every day, but it's not something I am confident with. 

I don't like big parties - just small gatherings and one on one meetings with really good friends. 

N - What's the story of your NAME? Were you named after anyone? Do you go by a nickname? Any aliases?

My mum just liked Leisa and liked the different spelling. Leisa or Lisa was not a very common name at the time, although if you meet a Leisa or a Lisa they are possibly born around the same time as me. I was going to be Leisa Marie - and I am a few months older than Lisa Marie Presley so I would have been the original - however my grandmother stepped in and practically made my mother change my middle name to the hideous one it is now, which is very Australian and very bogan!

My nickname is Prowdy.

When my brother was born and as he learned to talk he would refer to me as Dar-mae...and I kind of wish that had stuck.

O - OBSERVANT - What's around you right now? What do you see?

I can see my computer screen, the Police Station across the road, the bare wall in front of me that used to have some wonderful paintings displayed, the phone is to my right, along with some files. To my left I have folders, files, the key locker and general mess. Way over on the left of the room there's a sculpture that was done in one of the programs and I think it's a hideous thing. I wish someone would trash it!

P - Who are the special PEOPLE in your life?

Him

Them

My family

The two Carly's 

Kara

Q  -  Any little QUIRKS about yourself?

I'm just all out quirky!

R - What do you like to do for RECREATION?

Run! Like, der! 

Read

Crochet

Paint

Bushwalk

Swim in the ocean

S - Do you SING in the shower? In the car? For your friends?

I sing in the shower. I literally belt out songs in the car. I don't sing for friends, although I have been known to storm the stage when a band has been organised for an SSPA function, grab a mic and sing along with them - particularly Video Killed the Radio Star. I also love a good karaeoke session!

T - What is at the TOP of your To Do List?

Get a new job.

U - Any UNUSUAL experiences?

Oh gosh, there are possibly hundreds - and growing up Pentecostal I guess you could hint that every Sunday was unusual!

V - VEGAS, VIENNA, VENICE, VLADIVOSTOK - How far have you travelled? What's your favourite city?

The farthest place I have travelled is Los Angeles as recently as March this year. I can't say that it's my favourite city, but it's interesting!
I love Melbourne. It has my heart, as non-beautiful as it is!
Sydney also has a special place in my heart now too. It's beautiful!

W - WINTER, Spring, Summer, Autumn? What's your favourite season? What makes it special?

My favourite season is Autumn - which, for all you readers in the Northern Henisphere, runs from March to May in Australia. (or thereabouts) Melbourne has beautiful Autumns! It's still warm enough to go about in shorts and t-shirts if you want and sometimes you can still go swimming, but the nights are becoming more comfortable to sleep, the days are bright and beautiful. It's just lovely.

X - Exes?

Only teenage exes....and I don't think they count because they never went beyond hand holding and kissing.

Y - Any secret/deep YEARNINGS?

I don't think this is really secret, but I LONG to chuck it all in, get a camper van or something and go on the road; travelling, exploring, meeting people and stopping off to earn some money by fruit picking, selling some of my craft or living in community where assets are shared.

I would also LOVE to do backing vocals for someone on stage.

Z - ZERO to ZENITH - Where are you in your life? Still growing? On an upward or downward curve? Just skating along?

I am still growing, still learning, still excited at the prospect of all this life I have in front of me.

Spelunking about in the cave space

Image source

I've been quiet on the blogging front lately. I know I shouldn't really even mention that fact and should just blog on as though there has been no absence, but...well...there you go. I mentioned it.

Truth be told I'm hanging about in some kind of cave right now - a'la Gollum-like almost. No...not really...but I still can't get that image out of my head. When I was going through some really heavy stuff a number of years ago I couldn't help but watch the opening scenes of Gollum in LOTR - Return of the King and go..."Yeah mate, I get it." 

I'm getting sidetracked....LOOK! Something shiny!

I've got a number of posts sitting in various states of completion in my Drafts folder...but somehow I can't bring myself to finish them. Blogging is such a curious thing. How does one do a blog without making it too much like a diary? How does one write blog content without the population of the interwebz knowing all the inner machinations of the author's life? Am I too much of an over-sharer, a whiner, an over-thinker? How much of the daily goings-on of the household do I share before it starts being too intrusive on the privacy of the people I love so much?

These are all the things I have been musing on lately. There are times when I regret starting a blog. There! I said it! I am torn between wanting to develop my writing, develop this blog and make it start taking me places and just wanting to chuck it all in and disappear into obscurity.

I think I've said this before.

Truth is, life's just throwing some curveballs again lately (when does it not?) and so I've retreated back to the cave just to have a quiet space just to get through it. I'm like that proverbial little duck you see floating on a pond. On the surface all seems calm and serene, but underneath the water those little legs are paddling furiously to stay afloat!

Image source

Sidenote: I adore ducks!

Sometimes I find myself wondering if these life curveballs will ever stop. Somehow I don't think they will. I'm learning to deal with that. I spent a long time back in my younger days ranting and railing about what I perceived as the unfairness of it all, but I don't do that now. It is what it is and I have learned to accept and sometimes even embrace whatever comes along as opportunities to learn and grow. I've been participating in a writing project over the past year called Letters to Myself, where I have written to my younger 13-year old self. Writing to my 13-year old self made me realise what a pivotal time that was - kind of my Sliding Doors moment - and that if I had've made a different decision that year my life would have been completely different. 

The thought of that actually scared me. 

As a result of writing that letter to my younger self I realised that there isn't one aspect I would change. Not one, regardless of the curveballs that keep being dealt as a result of some of those choices. 

But going back to the cave...I realise I really need it sometimes....and, at the moment, most times. The world out there can sometimes be too big and too sad. Robin William's death today has rocked me, really rocked me. I think the fact that he succumbed to the despair that he felt is the thing that's really hurting....and I think the thing that I can relate to the most. On the surface, Robin seemed like a hilarious, happy-go-lucky kind of guy....but underneath the surface I get the impression that he too was paddling furiously just to stay afloat....and one day he just couldn't keep paddling anymore. 

My cave provides me with silence and solace. A place to just stop and breathe for a little while. There's no one else in there except me...and I can't begin to tell you how much I need that sometimes. In my cave I'm neither upbeat or depressed; I just am. Quiet, thoughtful, restful, contemplative. I do a lot of crocheting, a bit of writing and some organising of my space. It helps. 

Standing on a golf ball

Yes, that's what I'm doing.

Have you ever tried it?

Apparently it's good for releasing muscles that run from your foot, up your leg, around your hip and....somewhere else.

My PT would be able to explain it because she's the expert but I don't have a clue.

I've been standing on this golf ball for the past half hour; not just gently rolling it under my foot - no siree Bob! Full on weight bearing of the wincing kind!

But gee my leg feels better. This left knee of mine is the one I have to watch. It's the leg that was deemed crooked all those years ago so the weight doesn't distribute evenly down the leg and the outside of the knee cops the brunt of it. It's a typical achondroplasia thing. Bowing of the legs is quite common. Back in the 80's there was talk about having tibial osteotomies and getting the leg straightened but we opted not to have it done. I'm glad we didn't. Back then the procedure was a little more primitive than it is today and the results wouldn't have been as good.

Over the past week, since the 10k my knee has given me some grief so there's been no substantial running for me apart from a couple of 5k's whilst I was away over the weekend.

But hooray for golf balls! Sweet relief! I might even head out for a good run tomorrow. I've missed it. My PT has set me a 17k in two weeks time. Longest run ever. Eek!

Journeying to here

I write this "as the Manly Ferry cuts its way to Circular Quay." (Reckless by James Reyne.) Its a bumpy crossing as we come out past the heads. I'm enjoying it. The rockier the better. Put me on a boat/ship and I'm fine, but if I was in a plane this would be a different tale...

My partner has a migraine today, however he has encouraged me to head out on my own and explore, rather than just hang about the vicinity of the motel while he sleeps it off. This will serve to be of benefit to the both of us. He will have some much deserved peace and quiet whilst I explore this most beautiful city. Sydney really is lovely.

I've been pleasantly surprised by the affordability of public transport in Sydney. For a tiny $2.50 I have a ticket in my hand that will enable me to have a return journey on the ferry across to Circular Quay, then another ferry ride and bus trip over to Taronga Park Zoo. This lirtle ticket will get me anywhere in the city today! The possibilities are endless!

Once upon a time I would never have embarked on such an adventure on my own. I would have been far too scared that I would have become lost in an unfamiliar city. Now I am filled with confidence, knowing that there is always a kind stranger to point me in the right direction and would be more than willing to help. I am confident in my own abilities to stay safe and find my own way about. I am keen to explore and have my own adventure, content with my own company.

I have come a long way on this journey that I was once so reluctant to have to travel.

Having a break

My partner and I have been in Manly, Sydney since Thursday night.

Its been the break I needed.

Lots of rest, lots and lots of sleep, a bit of sightseeing, a bit of running...and happiness.

See you when I get back.