I wrote this blog Sunday 22nd October.
Do you reach inside and find the beauty or accept that skin and shape and lumps and bumps are but an illusion you must not fixate on?
That bump filled with brain fluid was not there before. The under layers of skin were not torn and stretched from the swelling of a saw and staples.
It is 2012 and the only story you know that tells of such things is Frankenstein. A monster. A craniotomy will do that. Little children cannot come in to visit. It is too distressing. Grown men you have known for years are reduced to tears when they see you, and they struggle to hide it. That thing- that expression. It is a pity and sadness. Yet everyone says you look great, you look fine.
They tell beautiful lies to help keep you grateful for the life you have. The life you hold that keeps your heart beating is what is so important. Their hearts shine true in that moment.
In those months after a craniotomy, I was not a monster, just a little broken. But no longer a girl, no longer a woman. No longer a dancer of ballet, of quick human movement and a painter or a poet. No longer the protector of my children at night while they slept. I prayed each night they were okay. That I could trust those loving them on the daily to make sure they looked at them in the eyes and told them they were loved and safe. Like I did.
I think of myself sometimes when it was tough in the third person.
I think it has been a way to compartmentalise. I was a grateful survivor, and yet a soldier of war with battle scars she did not ask for. She did not volunteer for. Yet she did not fight anyone off, she walked right in and took the needle and signed the forms. She wanted to run, she wanted to scream and hide and say no. But she could not. The inner confusion and turmoil, to damage oneself to live. What a notion.
To say goodbye and kiss the heads of your children, to get in a car and drive to a big bustling place. To get your head shaved and your body naked under a cotton gown not knowing if you will kiss their heads again.
Consequence is a word you hold in your hand like a strange seed you found. Which garden shall you plant that in? The one that faces the north and screams of Victim or the one that says Growth?
Then there is the now.
When I lose myself in the energy of the room, I forget about what I look like, what anyone looks like. It’s because I can feel everything, the love, the humor, the frequency of those around. Things like traditional beauty or prettiness or ugliness or any such appearance do not concern me. Until someone takes a photo. Because then it’s like an ugly little version of my surface just got captured in a bottle and can’t get out. Unless you smash it with a delete button. And then there is the fear with social media, that someone else will share the little version of you and others won’t see your energy, they will see the damage the war did. Why does it matter what they think and see?
Blindness was freedom from all of this. It was a relief. I did not need to see myself; therefore I did not have to validate my appearance. It didn’t matter. Out of sight, out of mind.
No makeup, no hair, no eyes to see the damage. Those super hearing marvel style skills were too much fun and the challenge of learning my environment in a new way all wrapped up in the happiness of still being on the planet surpassed any vanity.
Until my vision returned.
So much joy. Because I got to see my children’s smiles again, the pictures they had drawn for me. The sky windows- puddles in the ocean. So glorious and full. My husband, my family. Their physical, visual picture was mine again to capture with my body’s camera- the eyes. I was not prepared for the trauma of seeing myself again and finally understanding why my little boy cried so much. He wanted Mummy to look like Mummy again, and why the grown men cried. Why the mailman did not recognize me at the door and asked me who I was. I told him it was me and he said it was so sad. I asked him why and he said I was so pretty before… but don’t worry you will be again. And the nurse saw my picture on the wall and asked who it was.
”That’s me.” It is one of my favourites. It doesn’t look like me anymore.
Society tells you it does not matter it does matter it doesn’t.
Like this barge going back and forth between the shores of depth and shallow. Which one is it? Why do we get so distressed with scars and physical damage? We hero worship the survivor and yet as a species we spend millions on maintaining and enhancing the symmetry of the human appearance. A world that celebrates the beautifully broken on one hand and shining perfectional beauty on the other. Where do they connect? For surely beauty is unique, not a blended image of sameness.
Where is the distinction or balance in this? It used to baffle me, now it intrigues me and mortifies me all in one. I now believe when people speak their perception of what beauty is to them, it reveals the contents of their heart.
Then I got the all clear. Then the all clear was taken away. An inoperable option. Not an option. The lack of an option. We can’t do anymore. How much longer do I have? Not sure. Ok.
So we walk that walk. As a family and yet the unshakeable truth sits within me- LIFE IS FOR LIVING. Not for fear. It is the walk of the possibly dying. Because we all are. So it counts. Every day counts- it’s not a cliche. It is the essence of every single molecule and particle, shape, symmetry and pattern that exists for life to prosper. There’s a whole lot of work going on in the living here and in whatever comes after this version of life, there are many more of this I am sure also. But death is real too, and it might just be that death is but a doorway to another life.
So now I live in this one, I rejoice. I choose to live a life that is full with no excuses, to feel my way intuitively, guided by my understanding and perceptions, hoping to keep them as precise and sharp as possible to be valid and true. I listen to the guidance I receive, and I do my best.
I love within an inch of my being, and I hold those I love dearer than my own heartbeat. The patterns of nature and the design of our world intrigues me, as does geometry and physics, the gleaning of the matrix that supports the whole system has captured my fancy in a way unimaginable. The gifts of the spirit are abundant and my cup runneth over.
Yet still, this undeniably human desire to be physical as I was before the surgery haunts me every time a picture is taken, every time I look in a reflective surface, each time my body won’t work the way I want it to. So I will be grateful, and I will work on trying to mend that broken part within. I will be grateful for the scars and the bumps and distortions, I will be thankful for the migraines, the weird inexplainable seizures, the sleep apnea, and the blood pressure, the brain fog, the short-term memory and the fear of the sound of chainsaws, the narcolepsy stuff and the heartache and even the scar dandruff, because all of this means I am alive. I breathe. I eat. I love and I live. I am surrounded by good friends and family. I live in a country that is not war inflicted and where I can live this life this way. Because we all have our path to walk.
And I could not have captured this view of real life unless this had all happened. I choose growth and the power of the inner spirit guided by my God to overcome all and sit in Grace.
Why? Because you see restoration of the spirit and growth cannot happen without trauma.
Regardless of what any doctor might say I am going to live.
Because my chapters are not written by humans.
October 23rd this happened:
Neuro clinic appointment.
My brain has healed.
Option 2 Happened. (Bye bye Tiffany)
Car Park: screaming and crying hysterical woman spotted ranting loudly in Major Melbourne Hospital. Blue eyed man pacing in shock with what witnesses say was a a look of dumbfounded oblivion.
Incoherent phone calls to family.
Sister may have fainted.
Shock (hot water bottles, blankets and sister needed for this one)
Humbled like a small pebble in the bottom of a deeeep ocean. Feeling so small.
More Joy (don’t freak out the kids)
“Mum- we have run out of milk again”
No more fear- running under the moon
Crying (lots and lots of crying)
Dehydration from crying.
“Are you sure you got it right dear? You didn’t get confused?”
Parked outside Flight Centre and considered flying and climbing something really big and shaving my head at the same time and screaming ODONNELL RULES. (That was a weird moment) rang one besty who told me to do it and the sensible one said go home and sleep.
Spontaneous outbursts of laughing
Sat up in bed next to my sister while we planned our nursing home antics. (We will be room sharing)
Persistent need to kiss my children and it’s now giving them them shits.
Uncontrollable smiling – it’s a little creepy
Life is good. I need a new word. There are no words. I think I am going to faint and cry and I don’t know what.
Bucket list is ticked…now WHAT?