Brave – What Does This Mean To You?

Tuesday 15th February, 2022

I don’t like today, so I sit here with a coffee, cradled by this massive fig tree because it makes me feel small. Like the mountaintops of the Great Dividing Range used to when I was a child mustering with my beautiful Dad. I like feeling small according to nature, in this big world where our problems can outweigh our reality. When I feel ‘small’ it puts things into perspective for me. I am one human in a big ol’ world. This life went on before me and will after me. It makes me feel safe somehow, at peace with ‘what is’. No judgement…. Just me, my dad and the mountains.

But today, it’s just me and this big old fig tree, cradling me, securing me, no judgement.

It’s check-up day, my least favourite day of the year. Since my first neurological episode almost four years ago I have ridden a rollercoaster of emotions and trials. The initial year was hard. I was unwell. I soldiered on regardless. It was hard on my family and friends. There were a rare few gems that I clung to like a life-jacket as I was tossed and turned from specialist to specialist, test to test, looking for a magical cure – neurologists, psychologists, chinese medicine doctors, naturopaths, acupuncturists, chiropractors, massage therapists. I have read every book about MS I could lay my hands on, tried every diet and therapy.

I have beautiful family and friends who listened, stood by me and offered support beyond expectation. In the beginning I was open with my diagnosis, I was willing to share my journey.

Then the judgement. I heard rumours of people who said I was making it up. “She looks fine”. “She uses it when is suits her”. The whispers of “she has a disability”, “she might end up in a wheelchair”, “she is a risk”, she is a liability”, “she has a condition”.

A condition? What is a fucking condition anyway?

I want to scream at the top of my lungs “WHAT FUCKING CONDITON??????”.

So, about a year ago, the regret and embarrassment set in. I regretted ever telling people about my MS diagnosis. I am embarrassed about what happened. I don’t want to be treated any different than I ever have been in my whole life, so I delete every trace of MS on all my socials. I don’t do the 50K in May in 2021, because I don’t want people to look at me as the woman with MS. I don’t want people to whisper and gossip, because the fact is I very seldom even think about it, so why should anyone else?

But I know these opinions and comments are merely because people are uneducated and afraid. Afraid of how I might change. Afraid they are losing the me they know. Afraid of what to say. Afraid of what to do, how to act, how to show compassion.

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So now I’m sliding into the small round cocoon of the MRI machine. I’m naked; no metal so no jewellery, no bra, no hairband. Just a gown, a blanket, earplugs (because this machine is damn noisy), and a cage that’s locked over my head, and another that presses heavy on my chest. The cannula the ‘kind man’ has inserted in my arm ready for the contrast is aching as I kind of must bend that arm to fit on the small, cold sliding ‘so called bed’ I’m lying on. In the other hand I have a buzzer in case I am claustrophobic, have a panic attack and need out. The ‘kind man’ has put some earmuffs close to my ears and asks, “in case the music is working today (because it hasn’t been), what music would you like to listen to?”

“Relaxing country”, I reply a little embarrassed, as who listens to country in the heart of Sydney? And what country is relaxing? It either makes me want to dance or cry. There is not much in between for country music and me, but what the hell! This is my brain and spine scan. My hour of a complete invasion of my space. I cannot hide in here. I cannot nod and smile and tell anyone who is kind enough to check in that “I’m fine, I have had no symptoms for over twelve months, and I think I’ve been misdiagnosed. Maybe I’ve even healed, these lesions have disappeared. I read where that can happen you know”.

No, I can’t hide in here. This machine can see everything. Even though I look fine on the outside, it will see the truth.

I close my eyes, as I can’t look at the cage that is so close that I will go cross-eyed if I try to focus on it. Even the tiniest movement like swallowing can affect the image and they will have to do it again, so I lie dead still. For a whole HOUR!. (sigh…)

First I concentrate on breathing lightly so I don’t move too much, then I start to replay the most beautiful memories in my mind. Things I want to relive over and over, and for that hour I do. I relive the beautiful moments of my life so far. It’s a precious hour, and that hour in that MRI machine becomes my super-power. If I can do that, I can do anything.

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The elevator takes me up to the fourth floor, the Neurologists office. I wait patiently. It’s a weird moment in time. I know this next hour will change my life. I’ll either have no change and be able to believe all the ‘holistic’ things I’m doing are working and keeping my MS at bay, or I’ll have a change on my scan and my life will start a new journey.

I know this moment is not new and is familiar to many people. Whether it be waiting for the results of a test, a scan, or the news of a loved one. These are the moments in time we cannot unhear, we cannot take back, and they change us forever. Every single person will face hardship of a certain kind in their lifetime. I guess how we face this hardship is what makes us who we are? That’s what I tell myself anyway.

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The neurologist is very pragmatic as we look at the images of my brain on the computer screen. There’s not a lot of empathy and compassion in his delivery style. He says it how it is, does a quick physical exam which is all perfectly normal (that’s the good news), then takes me to the MS nurse who is left to mop up the pieces. I guess that’s what they are trained to do.

When the MS nurse is finished doing more tests and loading me with information for my new journey, passing me tissues and answering my insistent questions like “but I’ve had no symptoms”, “I’m doing all the right things, you know diet and exercise, reading, journaling, meditation’, “am I the only one who reacts in this way?”, she sets a date in a few weeks to touch base and sends me on my merry way. Just another diagnosis in the day of a neurologist and MS nurse.

But this is not just another day. For me at least.

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I leave the building.

The world is still going on out here? WTF?

People are walking hurriedly, talking on the phone, cars are still on the road, I can still hear a baby crying and god forbid…. birds chirping?

I can barely see because there’s some stupid fucking thing blurring my vision. “and no it’s not a lesion” I yell on the inside. I put on my sunnies, I somehow cross the street. I kind man slows and waives me across, “thankyou god for kind souls right now” I think. I walk through a park that boarders a beautiful cricket field. “Camperdown’s number one, Pete has played here” I say to myself. I wish my boy Pete was here right now, and I was here watching him open the batting instead. He’s an old soul my boy. He would hug me with the real genuine compassion and understanding that he seems to be able to display to all he meets. He would ease this pain.

I contemplate driving over town as he’s the only family I have in Sydney right now, to his boarding school and getting him out for the afternoon. No, I can’t. This is my journey, and I can’t burden it on anyone else. This is my moment, when no-one else knows this news. I need to feel it. I need to sit with it. I need to cry. To hurt. To contemplate. To deal, before I share this news with the people who this will impact as much as me.

So, I sit under this big old fig tree again, and I write my insides. I want to pour my insides into this computer so they are not so inside anymore. And slowly I am soothed by the birds chirping and the baby crying. Although a fork in the road I will be O’k. I know it…

Will this change the way people perceive me? I’m not sure?

Me being vulnerable in this way is scary. But it is also brave.

My brave used to be being stoic, nodding and smiling and making out I’m ok.

But I think it’s time for a new brave.

And if people drop off, that’s ok. The people who matter will stay, and some new may even enter. Life changes constantly, people come and go, and bravery comes in all kinds of packages. Today, sharing this story is my brave…..

🤍Lynda

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