Time is a tricky thing when it’s what we measure events or a lifetime in. It’s tricky in the fact that it feels unrealistic and made up. Eight weeks doesn’t feel like eight weeks. I mean, what is eight weeks supposed to feel like? Really? 42 long meetings? Five binged TV seasons? Or is it more like molasses through fingers, or something that trickles through you like rain? Is it measured by the lines in someone’s face or the greys now covering most of my face? It feels hard to tell.

But it’s travelling. And travelling fast.

Throughout that time, I’ve had so many friends say to me that they have had Mum come to them in some way. I know it’s their beautiful way of connecting and grieving, and at the beginning of my grief I felt very much a supporter of this sentiment — how lovely, and that’s so great. She was so social, so of course.

But the more it kept happening, and then the way it started to occur with the most random of people, I kept thinking, OK… well, that’s all well and good, but if you feel her next time, maybe just let her know that, on her busy schedule, it would be good for her to visit her kids too once she’s done visiting those around her, ’cause they would love a visit from her too!

It made me laugh that I had such an adverse reaction to it. Because it’s not the fact that people are finding solace and grace in connecting with their own grief in ways that are touching and beautiful; it was that somehow I couldn’t control the narrative of it all.

I had the same reaction internally when we got some lovely news.

Mum had donated her eyes after death. We found out she has given sight to two people — one in their 70s and one in their 50s. A beautiful gift. One befitting of our mother and one that sparks so much joy. That those sparkling corneas that saw the world with such openness are now glistening in someone else’s eyes in the world. And bringing light to another.

It’s a glorious thing. And the news should be rejoiced in.

But the news got shared, and I did not like it.

And I kept trying to ask myself why.

Not because of the beauty of the act or the information being shared, but because, for some reason, I wasn’t consulted about the sharing of it. The things we get to hold on to change for each individual and are very different for another.

And this is the funny thing: it doesn’t matter. In the grand scheme of it all, it is news that should be shared and adored.

But what has been the most fascinating thing to me, as the distance gets further from the fact that she has gone, is that information sharing becomes so sacred amongst a tight family unit. And I think it’s what can tear those units apart. Amongst a family struggling to hold onto its grief, small things become large and communication becomes key.

We are all processing our grief the best we know how, slowly and with confused care, like some awkward hug trying to offer solace but failing miserably. It’s a fascinating human study and one that, if I’d continued my psych degree, I would delve into more — how we all process it differently. The hurt is real. You can feel it just below the surface, always present and just within reach.

My last treatment went longer than expected. A new doctor and not-my-favourite senior doctor were on duty that day. I will keep reminding doctors who come into a room where you are facing away to say hello and address you — the patient — so we can all be friends. I know they have a task to do, but seriously, if you are talking to everyone in the room, maybe acknowledge the patient.

This senior doctor is a repeat offender. One whose arrogance resonates in the clacking of his dress shoes whilst everyone else wears sneakers or Crocs. It’s a power move to ensure you hear him coming. And boy, does he irk me.

They had the needle slightly in the wrong place, so they moved it with a calculated “sorry”, annoyed that I’d pulled him up on his behaviour.

We also have a history.

He was the one whose table I was on when I was in so much pain I passed out in January. His recollection of the events was very different as he told the other doctor what happened. I thought it best not to correct him there whilst he had those needles in my back again.

It was all fine in the end, but just a bit shit of an experience. But that happens, right?

Sometimes you need to let it all go. Let it get out of the system in ways you didn’t think you were holding back.

Apparently my body did just that for me.

Whether it was some bug I picked up or some bad piece of rice or chicken, my body physically said, “No, thank you,” and wanted me to start this renewal trip I’ve taken in a way that encapsulated both inside and out.

Thank goodness for Imodium.

I may have chopped that up like I had some nasty coke habit in the way that I was digesting it, but it sure did work wonders.

It’s never nice to start off with a shit story, but often stories do start with a shit story to get through to the good ones.

I kept thinking of the bonuses. I’m going to feel so much lighter at the end of this trip, and I was imagining the superficial calls of, “Ben, you look great! What did you do?” type conversations I was going to have.

But really, I was just enjoying the release of something.

I’m not sure if it was food-related, but it felt like my body was letting go of something it had been holding on to. Sometimes it’s necessary to let go in order to find a new normal, a new place to centre yourself. Like it was mining its way through to the core of the problem to begin again, to find the oil of success.

I had booked a short little holiday a few months ago. I haven’t really had a holiday that wasn’t work-related for a few years and was complaining about it to anyone who would really listen.

One of my mates from my masters said he would come and meet me somewhere.

We discussed a time.

And a place.

And I said, sure.

And on a whim, I booked my flights.

I had doubts. I’m not going to lie. Not because I didn’t have faith in my friend, but because he works in the arts industry, which is notoriously hard to plan time away from and schedule in advance. Plans change.

I found a deal at a resort where the plan was not to do much.

Chill out.

Not make decisions.

Relax.

Breathe.

Have a moment.

Then Mum died.

And it felt so serendipitous.

Here was this time I had allotted to go sit and relax and just take stock of the world.

Right on cue.

And to do it with a mate I hadn’t seen for seven years.

It has been lovely.

Time to take stock. To sit and sleep and immerse myself in water, by the water.

For me, there is something so calming about the sound of the sea thrashing down in the distance. Seeing the waves crash and rebuild themselves.

Ever changing, ever growing.

Never the same.

Forever changed.

I have had daily massages. Which feels so overindulgent, but also violent to your body — to beat it senseless each day. But I change up where we do the beating so it doesn’t always feel so tender.

And I’ve eaten well.

I feel I’ve barely touched the surface of tiredness and discussions. A week is a flash in the pan. Like I’ve been seared like the steak I had for dinner last night.

And I know how privileged I am to be able to do this, but it has been invaluable.

To disappear for a moment.

And it raises so many questions for me.

Is it to avoid dealing with things?

Is it to have just a moment to find myself again?

Is it to force myself to turn everything else off so I can find out what I’m really thinking and feeling?

I’ve slept.

I’ve let the sound of the waves crash down and wipe away the noise.

I feel good.

It feels hard to say that when you are in mourning.

But I do.

I head back tomorrow.

Who will give me my daily massage?

Where will I have my daily swim?

It’s hard to believe it’s been five weeks since Mum died. Time stopped and whimpered into existence, rapidly stealing days and weeks from us without us even noticing.

It trickled through some of the year of firsts already. The first family celebration without her was Joshie’s birthday. A week post-funeral, it was a gorgeous day, but a day when such a presence was clearly missing from the group. Like some great void. And the pain so deep and raw amongst the joy and celebration.

My first treatment day without Mum sending me her usual message of emojis and good thoughts beforehand. My first showing of a new work without Mum in attendance, and without an early morning chookas message, as usual, telling me to believe in myself.

It’s a weird time in the period after someone dies. You are thrown into the planning stage for a funeral you don’t know how to plan, and you’re wading through the thickness of a grief that is real and unexpected. How do you make decisions when you can’t think straight? Then come the tidal waves of love, affection and support. It is beautiful, yet overwhelming. So many calls. So many texts. So many flowers. People overwhelmed and shocked as much as you.

No one tells you that grief takes away your ability to sleep. I don’t remember that from the movies. I remember people in big sweaters lying on the couch with tissues, but I didn’t know you just never slept. That everything you go through is heightened by how little time you have had to rest and recover. And that everyone in your family is going through the same thing too.

It feels like some sort of cruel joke that sleep gets taken away from you. Ironic that “rest” is stripped away, yet it’s the very thing you need to get by. It’s a few hours here, a few hours there. Consistent wakings in the night. Not enough to give you functionality. But enough to give you false hope.

For me, it turned a corner so that all I could focus on was the funeral. Like some determined show producer, this was going to be the best show ever—one that Mum would have been so proud of. The venue was the hardest. A death in winter is cruel. Nothing looks great in winter. But we found a space, something that had meaning, that had history with us as a family. Then there was the music, the flowers, the speeches, the coffin, the catering, the order of service, the pallbearers, the photos, the videos, the order, the details. The details, the details.

Focus gives you distraction. Gives you a coping mechanism.

The funeral was gorgeous. Everything we could have asked for. Mum would have loved it. The footage is still live until the end of the year if you want to watch it: https://www.vividstream.com.au/live/susan-noble

Post-funeral, it felt weird trying to get back to a new normal. I tried to work, but focus wasn’t a thing I could do. My body was so tired from the lack of sleep. We all need rest to function, but mine really needs it for my nervous system to function properly.

I was dubious going into my 23rd lumbar puncture after the week I’d had, but it was also the first time going into a hospital since Mum’s death. It was a new team at the hospital that day, and it was filled with students. I know I wasn’t my jovial self. Once I got inside, there wasn’t anyone I recognised until I saw Emma, the Charge Nurse. She said hello, as always. But otherwise, today was new nurses, all trainees or people on placements. All my usual people who make me feel safe weren’t here today. And that’s OK. It’s a new normal. Remember?

The nurse who stayed with me was from RMIT. We spoke throughout the whole treatment, something I rarely do. She used to be a jockey until she had an injury and changed careers, going back to study as a mature-aged student. Mum’s family had a history with horse racing, and it felt fitting that I was speaking with this jockey-turned-nurse, who distracted me from the procedure that day. It was lovely and a wonderful conversation. And smooth sailing on the treatment side of things.

The following week I was down in Geelong, doing a development of a new work we were creating with some new collaborators and some I’d worked with before. It was an extraordinary week, but I realised I barely slept while I was there. I think the stress of holding a room together during this time was too much for sleep. But in terms of the project, I was so proud. Proud to be a facilitator rather than the leader of the project. It needed guidance, yes, but I wanted this project to be female-led and female-focused, and it would have felt very weird to be the only male voice in the room dictating structure rather than helping to guide. I loved it and the people who came to contribute, and I cannot wait until we make more of it. To go from a seed of an idea to about 60 pages of dialogue in five days is incredible, and I think it’s something so exciting. So here goes.

But what became apparent as I was sitting in my car, openly weeping on Friday morning from exhaustion, grief, lack of sleep, excitement and fear of what was happening, was that grief is a fickle thing. It is a fog of loneliness that comes in and out like the tide and strikes when you least expect it. It slaps you across the face or gently caresses your cheek as it walks past you, when you go to text them or wonder why they haven’t called.

I know that it takes time and tears. And there is nothing wrong with the time it takes, so I’m going through it with this new normality—or this new normal of life without, or life from a different view. Slowly and surely, as the haze and fog begin to clear, if only slightly.

Words are hard to put down when they’re fuelled with meaning. They find a way to push out a narrative and sum up the parts of how you feel.

What started as a regular Saturday turned into a day I don’t want to exist. Maybe that’s because of the daze I’m in. Like some underwater haze of space and time. A moment where everything has stopped, but everything has quickened.

I awoke to the news that Mum had been taken to hospital overnight in an ambulance. Not feeling well. Some chest pains. A call to check in reassured us everything looked okay. But then a call from my siblings changed the course of the day, and therefore my life.

“Mum’s had a massive heart attack and is being moved to ICU. You should get here soon. It’s more serious than we thought.”

Most of you know my mum. And love her. She is supportive, loving and kind. She is there to remind everyone that they are okay. They are strong. They are wonderful. All the traits she possesses.

Today wasn’t her day.

When I saw her in a hospital bed with an oxygen mask, I witnessed a woman I didn’t recognise. She was struggling. To survive. To push through. She’s resilient and strong and a fighter. She has been through so much and constantly amazes us with her stamina and determination.

Today just wasn’t her day.

Mum had been to the doctors three times this week, fearful an infection from her cellulitis was coming back. Knowing that she nearly got wiped out by that two years ago, she was eager to know what was going on. But it wasn’t just that.

She had an infection. But they weren’t sure what or where, and it became evident that the heart attack had opened up a vulnerability her body couldn’t fight.

She was trying, joking with looks and occasional words with the extraordinary ICU staff, who had already fallen under her charm, just as everyone does. Or did.

Today just wasn’t her day.

The chest X-ray showed she was in heart failure, and her body—the one that bore me and my beautiful sisters, the one that had carried so much—was shutting down, and we needed to say our goodbyes. This isn’t supposed to happen.

Today isn’t for that.

Mum fights back. She is a fighter. She pulls through.

She is dying.

As a family, we surrounded her like the army of a castle, ready to fight off the fear and doubt and send her off with love, encouragement and bravery. Her skin felt clammy. Like it was rinsing infection out of its pores, hoping to wash away the fears we never thought would happen.

Not today.

I told her I loved her. That she was the best mum I could ever wish for, and I thanked her for everything she gave me. I wanted to tell her I would be okay. But I couldn’t trust that sentence. I wasn’t sure I would be. I’m still not.

My beautiful mum, Susan Noble, left her body at 6:45 pm, shrouded by the love of our family and her brothers. It was beautiful and devasting. What a privilege to be there with her. What a privilege to share this moment together. What a privilege to bond together like some marvel universe team of action herow where we touch hands and everything goes bright. But then the coldness in the hand I was holding chilled the air.

She was peaceful and loved, and we are in shock.

I know this occurs all the time. Death is a journey we all go on. But today was not the day I thought it would come for my number one fan.

I don’t know what is happening.

I sat with her and our family for hours, thinking she would just wake up. Even back at our family home I kept thinking we’ll see her tomorrow. I still do. But we won’t.

Because today was not her day.

A testament to the woman I adore was the reaction of the staff. They held her. They hugged us. They said to her, “You are one of the most special people we have ever met.” And they wept.

Strangers who had become so integral to this day in our lives. Who helped us go through our hardest moment, cried as they left her, impacted by the grace and joy she brought them in the few hours they had known her. And that is imprinted into my DNA -the reminder that even at her weakest, she still inspired. And I’m not sure why that surprises me.

I’m not going to lie. I feel very vague right now. Lost somewhere between reality and sadness.

What a woman we knew.

What a woman to have in our lives.

What a woman to remember.

Today just wasn’t your day.

But how many days were.

Here’s to life

And the days we leave behind.

Before the day isn’t yours to take.

x

.

There has been so much in the media recently in Australia about MND. With the big Freeze, the death of the iconic Neale Daniher - founder of Fight MND, that it’s hard not to have a reaction to all of it. To feel like this thing you have that sometimes feels like a dirty little secret actually exists and be reminded of the severity of it all. What is known and what is not. What is inevitable in the end.

Talking with friend the other day we spoke about end of life and what the plan was. The type of discussions single friends have thinking how are we going to get through the later years.. Is it commune style living? Some village to share together? I said, what are you going to do, as there is a likelihood I won’t be around then. They told me to not think like that. But to me that’s not a negative, thats not a dire outlook on life, its a potential reality that I will not live that long. Don’t get me wrong if I’m up going at 80 then great but sometimes facts are facts.

The reminder in the media of people dying with this disease, consistently tells me how cruel and quick it can occurr. And it’s a matter of fact. Sure it’s not great. But it’s also a truth that is undeniable. Life can be shorter than what we expect it to be.

It’s hard to not have a response and discover thoughts and feelings when you are reminded of it so consistently in the media. Its not like I’ve supressed the feelings I have about the journey but it is a constant reminder when you see those blue beanies, or see a new story on the news that hones in on severity of cases or news to build an audience to get involved. A marketing and fundraising ploy to push towards the goal.

The feat of what Fight MND has done in terms of level of research, awareness and further knowledge is nothing but extraordinary. It’s quite the achievement and a reminder of how do we spend our time? Are you the type of person that jumps in and becomes an advocate, fights with every fibre for something or just live a life that is what you intend it to be?

Legacy is a odd thing. To me I used to believe that we could manage the idea of what we left behind. That it was something people could work for. Manipulating the final image of the person. But i feel the intentions of what we want people see doesn’t come from the actual facts but the reaonsing behind it. We are remembered for the way we handled situations, our list of achievements, the way we interacted with each other or the way we didnt, what was said and what at times wasn’t.

People do great things. They pursue something so noble that we see their drive and their pursuit as something so amazingly special especially if it comes at time when they should be weak and unwell. But what about those just getting through their day? Barely coping but stepping through life amongst their community to get through the days and final hours? Is there a difference? Or is all perspective?

The pursuit of what is important changes consistently. Before I think I was extremely driven for a career for something bigger than i could ever imagine. And it took me around the world and showed me how hard it can be and maybe not all dreams are meant to be reached or rather what you thought was the dream wasn’t the real dream after all.

Time shifts our focus. Well time and circumstance. I am different because of what is happening. Not only in the physical sense but also mentally, spiritually. When the ground shutters your point of view becomes like an etch a sketch being wiped clean. It’s a way to learn from what you have done but begin again.

I just went away for the weekend with some of my cousins up the country. A glorious wintery getaway with open fires, laughs and good company. A well needed respite from life and consistent deadlines. And a true reminder of what you take for granted in your own home and the habits you fall into to make life easier. Especially when dressing and showering. When the power goes from your legs, a lot of thing we take for granted, standing for long times (in shower or post shower) your lack of balance and fear of falling escalate from a slight concern to a full worry that you could slip at any moment. When you’re in your own home you get used to the little tricks you have learnt to avoid these things. The door frame you lean against, the places to hold when feeling unstable and you realize why some people find it really hard to get out of their own environments and discover new. It takes some mental problem solving so figure out what works and what doesn’t. And how much energy that takes away from you. Rest becomes more and more important. A recharge to make up for the extra drainage of power. Like an old iPhone model constantly losing speed as the day goes on. It’s something I need to remember. Exhaustion is real and paying attention to it helps. Because when you don’t. Mistakes happen. Just not yet…

As I type away, I’m sitting in the hospital here awaiting my 22nd spinal tap. The last one - a month ago, Went well and quick. Had one of my favourite teams on. There is something weirdly comforting that I’m here so much that the staff get excited to see your face. It settles the ease and makes you feel safe. And I do love seeing them and catching up each month. Like seeing old friends. But friends who are all there to look after you. As I look around at the other patients worried and fearful of what their medical imaging will show. Knowing there is a mystery to solve and many questions running around in their head. I want to assure them that clarity brings focus. It may bring peace of mind but it may not be what you want to hear. And knowing allows you to process. Fear hides in the shadows of uncertainty. It allows thoughts to permeate and evolve into something bigger than they ever should be.

And so I wait. Ready to be taken in. Aware of what I am in for in theory, but trying to keep those worries at bay, trying to stop the fear from everyone else to wrap itself around my own thoughts.

Everything will be alright

My GP is a bit of a legend. She’s one of those thorough doctors who checks everything and just tells it like it is. No sugar coating. Like a Band-Aid being ripped off type of feel. When I saw her last week, she told me that the more I go through treatments, the more side effects will start to show. Great, I thought. I had enough shit to deal with, but now there’s more gifts coming my way. Amazing. What a lottery.

Unlike Oliver Twist, instead of asking for more, I would like to fling that bowl back in the face of Mr Bumble and say, “No thank you. I’m full. Right up to pussy’s bow.” I’ve been getting a lot more headaches. Piercing in some way. Enough to be more annoying than manageable. Headaches weren’t something I used to get, but now they are a constant in my life. Add to that some fun dizziness. That feeling when you feel a bit off for a moment. Like the idea of gravity is trying to conspire against you. Not that I fall, but the laws of physics don’t apply for a moment. As if I’m an image being downloaded on dial-up in the late ’90s. It comes on sometimes when I stand or just when I look in certain directions. Apparently it’s to do with the consistent change of my spinal fluid levels each month. And the more I continue with them, the more those side effects will come up like persistent weeds destroying my deteriorating flower bed. I probably should have read the warning label more carefully at the beginning, right? I could have applied for a refund. Surely there was a detailed sticker I overlooked?

It’s just part of the process, right? A constant reminder that things evolve and change, and it’s not always for the better or for the ease of the situation. But it’s a new normal. New challenges. New bonuses. Luckily it’s mainly the week of and week after the treatment where they flare up, but it’s new and happening. What a bloody gift to have. But then again, it’s better than the alternative, right? And there’s the rub. The reminder that nothing is forever.

There have been a lot of those thoughts recently. Not in the negative sense, but to enjoy the present. A pal shared some personal news recently, news that is hard to hear about a friend. When it hits you, you are hopeful and understanding, of course, but it’s the things you don’t want people to go through. And news you don’t want to hear from friends. Reading their eloquent words was a reminder of why we turn to the power of language to help deal with things. Deal with the process, the facts, the feelings, the fear, the information to share with others, but also to allow yourself the ability to structure a sentence and figure out the story you wish to tell about your life and the words you wish to leave behind. It’s not necessarily how you plan it, but the more I write about it, the more it serves a purpose for coping.

I thought for a moment about the reaction of others. When I was leaving an appointment the other day, I overheard a person talking to my practitioner I had just met. They were being very nice, saying, “Yeah, he’s a good guy.” (Obviously.) And then I heard, “The way he’s handled everything is so… I don’t know how I would be with all that he has gone through so quickly. But he takes it in stride.” The lift doors shut and I tried to work out whether I was flattered or over this type of conversation.

What’s the alternative? There are moments of unexpected tears and moments of not being okay. I have been called strong and stoic so many times because of what I’m going through. And something about that has irked me. Consistently. I keep thinking, what other way are you supposed to deal with a situation that changes your life? You can be sad and depressed and angry — and I was that. I have been that. I still kind of am that sometimes. But we manage to be outside with a different shadow in front. A different role to play to get through the day. That moment. That party. I think people project their own fear onto you and it becomes a new way of dealing with taking on other people’s reactions to you. I got pretty angry at a good friend who kept saying it. It felt like it was something bad. Like it wasn’t okay to be fine. Like I was supposed to be upset all the time. The quote was, “I know you have been changed by this because you’re different.” I felt like saying, “No shit, Sherlock.” Of course I am. I will be forever changed by it, not just physically, but also when you are confronted with your own mortality, you change. You see things differently. Your reactions are different because the new normal is the new normal. I remember another pal who was riddled with cancer always talked about how the language of fighting around disease troubled her. As it was never about fighting; it was living with it.

It’s an odd thing to be annoyed about. It comes from a good place for sure. From a language we are taught to share. To reassure others. To make sure we tell them how well they are doing. But it doesn’t always feel that way. I would imagine it’s something like grief. The way we discuss it and automatically ask, “How are you doing?” when we all know that question is impossible to answer. It’s too large, too overwhelming. “How are you getting through all this sanely?” “How are you this very moment today?” These questions are a good way to compliment and also allow the person to respond in a way that’s manageable.

I don’t know why I have a bee in my bonnet about it. But it’s an infestation. Or maybe it’s a reminder of how light the shell is. That any break in it opens up the horror of reality. Or maybe I am weirdly okay. And have occasional moments of not great. I have done too much work and spent way too much money on therapy not to be. Things make sense.

In other news, after seeing three extraordinary projects in Melbourne this week, I was both inspired and reminded of the lack of disabled awareness onstage and on our screens. As I use my wheelchair more and more, to see yourself reflected in the industry is a huge deal. And when it’s not there, it’s disheartening. And a reminder that the barrier exists. I’m watching a UK comedy right now as I’m typing this; there is an actor in a wheelchair in a wonderful guest role. I remember her from a musical where she was extraordinary too. I always feel the UK does it well. But here, it feels unattainable and not okay. We cast from the pool of sure things. The pool of “this will sell to an audience.” But does it? I’ve been finding it hard to keep that flame burning when it feels not out of arm’s length but now a step away. Physically.

But it’s giving me fuel. Fuel to create my own stuff. It just gets annoying when you are consistently creating everything to suit you. Like you’re trying to put a square peg in a round hole.

It’s a joy.

One last monologue — let me just go on a bit of an angry tangent right now. If you don’t have an accessible parking sticker, please don’t park in an accessible parking bay. The other day, it took me 30 minutes to find a park for an appointment. Thirty minutes because vehicles parked in accessible bays didn’t have any passes. The first was a delivery vehicle, who said, “I’m just picking something up.” I don’t care, mate. So am I! And just because there’s a space doesn’t mean you’re allowed there. The second time it was someone just running in for something. What entitlement. I’m sure most of us have done it. I definitely did it years ago because I was just going to be quick! “I’ll just be a moment. I’m so quick.” But now, as I’m on the other side, I get it. It’s stuffed up. It really got my back up. Rules don’t apply to all of us, right?

I am two more treatments in since we left off and not much has changed if I’m honest. Since ending one of my medications (Diamox) that was reducing my spinal fluid, the treatments have been going much better. A sense of normality in a way. My spinal fluid is back to a normal steady flow. Hello. And we are back to routine. A monthly painful jab for about an hour. Lots of headaches and some dizziness. My new normal.

The last one was a reminder to don’t judge a book by a cover. Its a habit that is hard to break but its good to be reminded of. On meeting a new doctor, I assembled an idea of how he would treat me in the room. After 19 lumbar punctures, you start to know the people and can take valid guesses on the type of behaviour some people will exhibit. I did so thinking here we go, another one lost to arrogance and know all. But then on the table, I was wrong. This new doctor was caring, compassionate and personable. It was a lovely change. Don’t get me wrong there are an amazing collection of doctors that work on these treatments but there are some that have their own ego in their way. And so when you meet the unexpected, its a joyous suprise. He even came to check in between the next procedure and just see how I was. I like being proved wrong. I like being treated like a human. Not just a number at the hospital. Some patient who can think for himself.

Imagine that. Its like people who start pushing a wheelchair with you in it without asking. Moving you around like you’re lost the ability to use your arms too. Its a testament of what you learn over your years. I remember doing accessibility training 20 years ago for a front of house gig and being told to always ask first if someone needed help. Never assume. They said. It always stuck with me. You may think you’re helping but a simple question is needed. Let me know if I can be of any assistance. Now being in a wheelchair most of the time, I realize how much that chair becomes an extention of your body. Its weird to describe how intimate it is. This object that becomes part of you. It makes sense in some weird way. An object that has become your mode of movement. Like some new legs. An object that feels someone’s touch or lean.

The lessons we learn over time.

I’m another year older. Which happens each year - we get it! But this one felt different somehow. Like it was some weird sort of accomplisment. A step in the right direction. A slice of normality. Like I should have felt good about hitting that goal, rather than not. Some special achievement that I’m still here. Still going. And I wasn’t sure how to take it, if I’m honest. Why celebrate hitting a birthday? Isn’t that what we do every year? We grow older? And wiser? And age. That’s normal. To continue on.

I never had the feeling when I hit the major numbers that people start freaking out about. I witnessed it in others but I sailed through 30, and soared through 40 with excitement, ready to take on the world and go with the adventure life was taking me on. Now at 45, it hit me. Something was different. And it wasn’t the age. It was just that I’m still alive. Just over a year post diagnosis and after a year of saying goodbye to some pals, to get through another year just felt like I won some competition I never entered. Don’t get me wrong - I’m happy to still be here. Still moving on. Its just a different feeling when you’re involved in something you never thought was going to be the case.

Theres a suprise around every corner. It’s hard to navigate those minute shifts when they keep occuring all the time. Unexpected new thoughts.

A few of my doctors have asked me how I’m going or the more favourite question currently is do you think the treatment is working? I do want to ask - isn’t that your question you need to answer? I don’t know what’s happening. There is no gage to check. No checklist to follow. No timeline of major events. Do I move differently to what I used to? Yes. It got worse. I use a chair alot of the time. But that also is a reaosn why my legs aren’t as strong as they used to be. I’m still able to walk a little but not long distances. I work them alot with my physio every week. They aren’t as steady as they used to be. And it’s not out of pain, it’s out of strength. The legs buckle, I can’t hold myself up and I fall. It’s strength. I get more headaches than I used to. My vision is worse. So is it working? I’m not sure? I remember them saying that after 2 years it showed to significally slow down the symptons. Two years is in December. And then if i didn’t have it - what could I have been like? There is no way to know. I’m here. Another year older. And still going. Also how is my knowledge the best? Am i the most qualified in this conversation?

So many thoughts. So many questions.

This isn’t helped when you’re working your face off. Years have gone by when the festival life allows you to distract from feeling anything you need to feel. Healthy if you know you are doing that for a reason. You’re working all the time so you don’t have face any truths because you don’t want to. If it’s a concise choice it works. It serves a purpose. When when you start to realize that that that coping mechanism doesn’t serve you as well as it used to you realize that the list of problems in your way. And when that begins, it’s like travelling through the boat ride into Wonkaland in Willy Wonka. The Gene Wilder version. Some acid trip of a boat ride where everything starts flashing through your head.

And maybe thats where age becomes part of it. The older you get the more you realise you can’t use the old habits of yesteryear. Or maybe it’s just from years of good therapy. You realise more what you do and why you do thing. But whatever it is something is changing.

I am becoming more sensitive. Which is crazy to me as I thought I was pretty sensitive before. Give me a tear jerker commercial anytime. But the vulnerability is down. And I feel it all now. So deeply. So heavily. All emotions. Big bold huge emotions. I’m just getting better at understanding them and not hiding behind them anymore. I think I got scared a long time ago that being sensitive wasn’t good. Actually acknowledging how you feel is pretty damn healthy actually.

And so that’s where the learning comes from. From knowing where you are now. There is a freedom that comes with it. All those thoughts you used to have, those steps, those common instances are out the window. Now you can do is be free. Those insecurities that were worthless, and made me feel not fit for most things, I get to throw away because they no longer serve me well. They no longer serve hiding behind what’s what is scary.

Because the scary has already started. It exists with the excitement, with the joy, with heartache, with the love, with the knowledge and the suprises. And so to feel like you have hit another year, is probably a new normal. But instead of a year maybe it’s focus just needs to be another hour. Another Day. Another Week. Another month. Another friend. Another party. Another dinner. Another laugh. Another kiss. Another season.

It is life. Giving you a chance to to remember that time is special. It takes things away from us but it also gives us the things we hold tightly. Birthdays, anniversaries, the time this happened, the moment that occurred, the moment I saw their face.

Just got to find the moments. And march to your own beat. Just don’t lean on my chair!

Its hard to know when everything falls into place. You hope it finds you in a state of ease, a time when you can appreciate the facts and understand the truth. Sometimes it skips the easiness and through the challenges you find yourself clearing the reeds to see the sun, lighting the way of fact through the hardship.

Its probably ridiculous to most people but to me the fact that its not normal to have a spinal tap every month only occurred to me last month. For so long I think I’ve denied the truth of the matter. Maybe to be braver than I am, or to delude myself in thinking it wasn’t too much on my body but the trauma of the new years dilemna of having a seizure and fainting during that treatment really slapped me into a reality.

Oh how scary it is. And how painful it is to go through it every month. And how taxing it is on the body. 16 spinal taps in a year is alot. Alot to bare and alot to go through, and I had forgotten or protected myself from understanding that fact.

The 17th spinal tap occurred in January. Abrehensive before hand would be understatement. I was remaining positive but definitely deeply worried that the next injection would be as terrifying as the last. Even though my specialists all said they think it was just a once off. A one time of excessive pain that the body just shut down for the moment. Won’t happen again. Great. Can’t wait.

The treatment went well. It was long. But careful. The drug that I had been taking to reduce the level of spinal fluid in my body has slowed the timing of taking spinal fluid out of my body each month to a glacial pace. An agonizing drip drip drip rather than a gentle flow. I’m off that drug now, but its effects are still slowing down the systems in my body. I remember when I first started to have these done, when the doctors were quick in getting into my spinal fluid sack, then the whole treatment would take about 30 mins. Now the 90+ minute journey of needles in the back is not so easy.

This time the staff kept me talking throughout. One to distract me from my anxiety but the other to ensure we didn’t have a repeat of the past. As the treatment went on, I was doing ok. But as we turned the corner into the similar time as last time, I had some type of fight with the way the body remembers the score vs my anxiety and started to feel faint. They went into manic question time. Do you have a pet, what' was it’s name? Cat or dog? Anything to keep me busy, and awake. Look over here whilst we finish it off. And it made me realize that’s what I’ve been doing all this time. Protecting myself like a rub of the tummy and a pat on the head so I didn’t have to deal witht he fact that each month,, it is painful, scary and tiring.

The honest truth is ok to feel. To acknowledge. How tough and tender we all feel.

This past month I said goodbye to a friend who was going through a very painful journey and it brought up a lot of things for me. She was remarkable. Though the horrendous pain she must have felt, how positive she was about things. And clear of thought. I’m so thankful to have had the opportunity to sit with her and some dear pals for many hours where we laughed together, reminised, and spoke about life in its honest, humorous, and its grace. It was a special moment. And in a week she had gone. And that is life. A wonderful pal gone but not forgotten.

There are a few friends I’ve lost throughout the same disese trajectory we have shared together and it is a very hard thing to be reminded of our own mortality when you lose someone. It feels a little more pointed when you have something underlying your existence. And then comes guilt for thinking about yourself rather than sitting in the mourning. But that probably is just mourning.

Now on the eve of my next year around the sun, my birthday, I look at the year ahead as a change. A lesson to be learnt from the reality that is sinking in.

Perhaps the trauma my body goes through every month is alot. Maybe resting as much as possible is the best thing i need to do now in my life. Perhaps my priorities that I’ve used to either hide or distract from my actual reality isn’t serving my intentions anymore. Maybe its time to understand what is actually happening and be ok with it.

Maybe a new day is dawning again.

I purchased a print to celebrate. One because it supported someone I know, that reminded me of Scotland and a brilliant year of my life, and two for the work itself. A symbol of reflection, of fun, but also how we paint with the colours of our world to show each other how beautiful it is.

What a gift.

Artwork is by Alice Masters-

https://www.alicemastersart.com/

When you get to stop for a moment from the consistent noise and distraction of life and tasks, the stillness grabs a hold of you, and it allows you to just take stock of what’s been going on, where you are and invites the thoughts you’ve been hiding away with busyness to flourish and take bloom. Sometimes for the best. Sometimes not so much. Like those shadowy figures from the movie Ghost, they appear in the everyday whisking you away to some place you don’t want to step into.

Its a a real slap into reality. All those months of distracting myself with so many tasks and to dos had finally stopped and now it was time to to take stock of everything that just happened.

It was a whirlwind. What I jammed into a few months was alot to say the least.

Three big work trips of long hours and intense situations for the Volleyball World Championships in Bangkok, Manilla and Adelaide. Such amazing memories, such amazing opportunities, such amazing times. So much Volleyball full of exciting and unexpected surprises. Occasional downtime but working hard to get everything done.

In between the three week stints at each stop, instead of resting, or taking stock I thought it best to do the opposite. Push myself to the limit and make sure that I do everything I need to accomplish something. I travelled back for each treatment. Threw myself into a new develepment of The Dilly Dally of Death & Dying through the City of Kingston with Krystalla for a few days each time I came back so we could work on a new script and bring in some of the extraordinary ensemble from our first season and build it into a new tighter version. Which meant writing time. Writing whilst you have 7000 other things going on in your head and also talking about your life, as it is based on some of my experiences, was not at all easy. But I’m glad it happened. It forced me to try and look at things when I was at my most exhausted. When the guard was down. And I think we are in a much better position now because of it. We wanted to do a bit of a public showing of it but it just needs the final touches. And maybe some new music. Our first season was full of crowd favourites, but we are looking into creating some new songs to add into the mix too. Why not?!

I also did MEMBER for Melbourne Fringe which went quite well. And I moved house.

I did all the things you’re not supposed to do all in succession and with limited time. Stressful. Big things.

So when i got back from Adelaide about to start a new contract I was a bit shell shocked at what was happening with my life.

How did i do that? And how long can I sleep for??

I think, like many of us, we use the idea of keeping busy to avoid what is happening in our life. Whether its making a decision, not processing your emotions or admitting whats happening, or putting off something you really need to do, I’ve been a consistent partaker of the game. A seasoned professional in the sport of the avoidance of reality.

But the more I go on, the more I’m aware of what I do and why I do it. I think for most of the time it was always about avoidance of feelings. Not being comfortable with feeling the way I felt about things. And that is ok if you know you are doing that and you’re keeping busy because of it. But what I’ve realized is that behaviour I’m used to doing isn’t serving me well especially now. I need downtime between things. I need a moment. To regain strength. And just chill. And this is good to know.

Because when the merry go round stops. And you have been nonstop for months, when your feet land it really just slaps you in the face. Reality. Tiredness. Time. Some old habits have to die so we can move forward.

And to know that at the end of a year is a good reminder to remember…. remember what is important. What you need and what you want and what you have.

Going into my 15th Treatment under Fluroscopy in the afternoon. Everything this time was slightly different. It was in the late afternoon, which isn’t normal for me. Was offered not to wear a gown and just lift up my shirt. I mean what do you mean? Not wear that fashionable back to front blue gown with the back flaps open? Who doesn’t love that shit. Then was asked if i wasnted to put some numbing cream on now. I was like what is going on. I didn’t think by 15 times, everything i knew about what happens as soon as I enter the doors was out the window today. It’s gone rogue! This one was a little sore to find the right place but what took the time was the extraction of my spinal fluid. It seems that now I’m on Diamox - to help me reduce my spinal fluid on my brain, one of the major drawbacks is how long it takes to take out of my body. So instead of the usual average of 30 mins, this treament went for 1 hr and 30 minutes because of how long it took to extract it. It was like a Glacier melting. Drip, drip, drip. So so slowly. The doctor called for backup. His supervising doctor. I know his voice and reminded him to come say hi to my face again. It is fascinating that so many in the healthcare are not great at the bedside manner. And I’ve made it my mission to remind them to say hey when they can. Introduce yourself. Put the patient at ease. I reminded him I told him off last time so don’t let me do it again. And he did pop around from staring at my back to come see my face (I’m not allowed to move as I have giant needles going into my spinal cord) and saying hello. Just nice to know whose talking to you. He was very apologetic. And lovely. But it makes me laugh everytime like oh come one legends. Do better. We waited it out and just took our time letting the CSF (spinal fluid) and then continued with the process. I had a bad headache afterwards but all good.

Let’s go to sweet 16. That was scheduled for New Years Eve 2025. Thinking it would be a similar experience to the one before with the very slow extraction rate of the spinal fluid, i was ready for a moment. A very slow moment to finish off the year. But it wasn’t the moment I got.

When I went in around 920am it was fairly quiet. Nor many people around but some of my favourite people who I like to see when I head to that hospital were there which always puts a smile on my face. A nurse I hadn’t met launched into the usual questions. No introduction no bedside manner no fun times for me. But what I did take from the very over explained introduction was that its happening under CT Scan today. Whoa whoa whoa. Hold on sister. We no longer do this through CT scan but fluro right? Apparently not. I said lets start this again. What’s your name? Hi there name of person. I’m Ben. Lovely to meet you. What questions would you like to ask? To some this could be rude but really to be in hspital and be treated like a number not a person is triggering and I hate it. I see it every month. So many patients terrified and some people who are not good at bedside manner giving them news or explaining things without some personal grounding. I observe. I listen. That’s how I work as an artist, to take in snippets of the world around me. So when i see how people barely interract its hard to watch. Yes, some people just want facts but it is nice just to have a moment of connection then go through that. Anyway rant over for now.

A Bit of a chat and a nearby legend, stepped in and tried to assist and see if there was anything that could help. They knew me and wanted to see what options were open. But everything was booked. to CT scan it was. Sure. let’s do it.

Doctor came out to to go through all the scary stuff the what ifs. It’s always the same. After 15 goes by now, i could probably tell you most of them by heart. Sign your life away then get on with it. As we moved into the CT scan soon with the 3 people in the room, i realized why i hate CT scans for this procedure. The bed is uncomfortable when lying on your side. It’s a curved bed and I generally have to swagger to the top of the curve to lie on my side. Then it’s the consistent in and out why they try and find the way in so they can take a photo and hope the best they are following the right path. Like a map. But it felt like it took forever. The numbing injection was painful. Always is. As expected. On our way to the get into the spinal fluid, I got a sharp nerve pain down my left buttocks around my coccyx. Let the Dr know as you do. Then when we got into spinal fluid. It was very very faint drip. Probably from the diamox again. There were moments of sharp nerve pain like an electric current through my body that changed in consistency. But eve present. Apparently they normally use an extraction tool that helps to suck it out but it wasn’t working so he had to let it drip slowly. After a long time he managed to get it all done. Now it’s time for the tofersen. The usual drug that I have that should be administered into the same point. As it went in, it felt different to normal. It felt like it was spreading around my coccyx area into the buttocks. Not normal. I thought. Then my ears went blocked. Odd. I thought. I said quickly “Ears are blocked”. Then I looked up my eyes were blurry and was about to say something until

………………………………………………………………………..

I jolted awake and saw there were about 10 people in the room deeply concerned. My fabulous nurse in the room was like do you have diabetes? No. I said. Sleep Apnea? Not that I’m aware of. “is everything ok?” “Did I fall asleep”? I could sense something wasn’t right. The nurse was very good at picking up cues and said you’re ok… You just had a little sleep and we tried to call your name but you weren’t waking up”. Oh I’m so sorry. So sorry everyone. Apologies.

A new face in the crowd asked me, “can you tell me where you are and to your knowledge what just happened prior to this?”

I said of course I was having my tofersen injection by spinal tap and started to feel a little faint and now there are alot of you in the room here in this hospital.

My nurse said, great, it’s all good, we moved very quick so all the sharps were out the way. You just gave me us a all a shock.

I said, did i fall asleep during the procedure? (thinking oh god… were those needles still in my spinal cord?)

Yes. But all is good. But we are going to take you to the Emergency Ward to do some tests because it’s not like you to have that reaction so we just want to do some tests to see if there isn’t anything else going on.

That’s when I knew things were more serious and there was more to this I didn’t know.

Rolled through to Emergency, the nurse took me through with all their staff and did a handover. This is where i found out more information. When my eyes went blurry she say that my pupils went dialated and I start to have a seizure, worrying them that I was having a reaction to the medication which was odd because i had 15 treatments prior. Then I fell into a deep deep sleep, snoring like a sleep apnea where I could not be woken at all. 90 seconds was the total time i was out. But this new information was enough to scare the shit out of me.

In Emergency, the gentle, caring and beautiful Dr was a calming presence to state we are going to to do some blood tests, an SCG for the heart and a brain scan just to see some more information. He asked for some information and I explained all the feelings I felt prior to the pass out and his initial thoughts was lets see what the results say but his initial idea was that my body went through some severe nerve pain and the pressure in your body just said no and passed out. Mainly because you remember exactly what has happened and where you are etc but let’s see if there is anything there just to check.

Then comes the wait. Letting people know and the shock sinking in so the tears would come.

And they came. Those scared tears of what was that? And the thoughts of what if its more. And feeling lonely. Not alone but just a thought of who to call. My family of course.

I let the family know for sure. They are the solid rock that grounds me and supports me and are always by my side. And popped it on socials. I usually put my treatment one up there but opened with a some other info there too.

I think when you are sick and scared is when you really think about who is there to be there? Especially when you’re single. And those friends showed up in droves for sure with offers. Pals who would drop all to come and help. Who have got your back. Which is special and beautiful and I’m so grateful.

But it was the first time in a long time there was definitely a thought of who would be there to hold the hand (other than family) that can share your fears with me as my loved one? And that intrigued me. That through it all that was still there. The need probably to be held and cuddled and have intimacy in terms of affection with. And it surprised me.

My results came back clear. Bloods were very healthy. White blood cells were raised in my Cerebral Fluid but that’s a byproduct of my treatment and has been flagged previously. Heart was good and nothing in the brain. Nothing I said? As in no brain? The new doctor joked and said yeah nothing in there at all! We will have to do some surgery. Kidding. No all clear. Get out of here. Go hit the clubs. We laughed and said the only thing I’ll be hitting is bed.

So New Years Eve was a very different feel than usual. An expected term of events. But what it did allow me was some reflection. Some clarity. And some reminding.

Nothing is ever what it seems. Meaning I cannot assume I know how things are going to go. Just live in the moment.
Value those around you. Those willing to look after you and check in and follow up and spend time with you.
Understand where your boundaries are. Where you need to relax and have time by yourself is not selfish, its just what you need right now.
Don’t always be a hermit though once you have rested. Invite people over… get things happening.
It’s ok to cry. Crying doesn’t always mean something is wrong and has to be fixed. It just means you are feeling something and it can come out whenever. Its not something to be afraid of or shyed away from. You’re emotional. Be fucking emotional.
Life can change in a flash. So fucking enjoy it.
Finding the balance of rest and enjoyment can be difficult but doable.

So to you here, thanks for reading. See you next month!

Here’s to Auld Lang Syne
Robert Burns
1759 –1796

Should auld acquaintance be forgot,
And never brought to mind?
Should auld acquaintance be forgot,
And auld lang syne!

Chorus:
For auld lang syne, my dear,
For auld lang syne
We’ll tak a cup o’ kindness yet
For auld lang syne.

And surely ye’ll be your pint stowp!
And surely I’ll be mine!
And we’ll tak a cup o’ kindness yet,
For auld lang syne.

Chorus

We twa hae run about the braes,
And pou’d the gowans fine;
But we’ve wander’d mony a weary fit,
Sin’ auld lang syne.

Chorus

We twa hae paidl’d in the burn,
Frae morning sun till dine;
But seas between us braid hae roar’d
Sin’ auld lang syne.

Chorus

And there’s a hand, my trusty fere!
And gie’s a hand o’ thine!
And we’ll tak a right gude-willie waught,
For auld lang syne.

Chorus

I’m behind on filling you all in on life. Apologies. Life has been manic to say the least.

I got back from Bangkok, for 4 days to have my spinal tap, and do two days of a play development then flew out to Manilla to do another Volleyball tournament for a few weeks then came home, finished off the development, had another injection, performed at Melbourne Fringe and moved house. Do I like to keep busy? Yes, yes I do. Have I always done this type of thing? Yes. Is it getting too much? Hell yes!

There is definitely a level of distraction used when you’re going through something. I’m aware I use that busy busy nature to not deal with how I’m actually feeling about things. It’s sometimes a conscious decision. Its sometimes isn’t. A visceral gut instinct to do it because I think it protects me. As I chip away at my own understanding of my habits and protection methods, you get to see how afraid you can be. And the things you do to protect that from getting out.

Let’s start with the accomplisments. Manilla was great. I saw the hotel and the stadium. Not much else. A typhoon was nearby, we got the very strong winds, and rain but no where near the devastation of other parts of Philippines. I sang at Karaoke with my colleagues. I took my hired wheelchair and got pushed a lot by random strangers wanting to assist and forgetting to ask and worked worked worked.

We have been developing a new draft of The Dilly Dally of Death & Dying and had the privledge of working with some fabulous actors again to play with some new ideas to help with the new script. Because of the work load whilst away, I couldn’t get the time off to concentrate on doing some writing on my off time but still played with some new ideas.

Then we did a one week season of MEMBER at Melbourne Fringe at the Meat Market in North Melbourne. It was a such a joyous experience to get back on stage with wonderful artists. Stephen and I had only performed 4 times in San Francisco with this show, and this was a lovely continuation of that collaboration, with a new team of working with my old pal Bronwyn on lighting and our new pal on Tech. There is something about coming back to a piece of work you have done many times in your life. It lives somewhere inside you and although my movement choices have changed due to limitiations, the work has become stronger in me because I have to find other choices to communicate with the audience, I’ve been through more, so the subject hits harder, and I realize that really if i concentrate on just telling the story then I don’t have to worry about anything else. We had a lovely week. I’m not saying that the show isn’t taxing. This show takes it out of me and my nervous system. And it’s exhausting. I can barely move my body afterwards because when you are playing someone who cannot express their emotions it affects your body. And for me, when my body has difficulty moving anyway, it’s a lot.

The run was a dream. We got nominated on the first performance and then came the Awards night. Not only did we win the Geelong Creative Development Award which is some cash and inkind studio time at Geelong Arts Centre and mentoring from the programming team which is so exciting about building future projects

We got a 2nd award. The NZ Touring Award which supports us going to the NZ Fringe in Wellington to do the show.

So bloody wonderful. Such a suprise and joy to get those two awards and be included.

And thats not the only thing we had won. Earlier in the month, I was so lucky to be one of the recipients of the Arts Pay Foundation Grant Round supporting the creation of our new version of The Dilly Dally of Death & Dying.

I had been an incredible mix of extreme highs and achievements. And so much gratitude for opportunities.

Then sprinkle on a move. If moving is in the top 5 stressful things to do in life, this wasn’t probably the time to do it. 5 days after I returned from overseas trip. I do thank my planning brain for packing boxes about 3 months earlier but boy oh boy, what a time. It also brings a lot of things up when you move, especially when you don’t have the capacity to actually physically move alot of the items yourself. Also its about finding your voice. I get really frustrated now when people don’t listen to me. Or what Im trying to say. And that comes from the very strong likelihood that there may come a time in my disease trajectory where my voice is taken away from me. So if people don’t listen to me now when I’m articulate and considered, how is that going to go when it comes a time when I can’t verbally communicate and therefore they don’t hear what I need to say. I’ve done enough work on myself to know that its usually from other peoples anxieties and their need to help. And this may sound harsh but it’s true, if you are ill or different to what others perceive you are not responsible for other people’s anxiety. That is for them to work on. Its their issues they need to address themselves. Overstepping is hard. It comes from a good place in theory but the method is never the best. As it’s their own fear taking over and they are usually subcounsciously giving it to you to hold. The need to check in, the need to baby or sometimes over care for someone who is on their own journey with what they need. Give it back. Because you don’t need to deal with it. That’s what therapy is for. To work on your own feelings and challenge the way you deal with things.

This was also not helped with a recent trip the optomistrist. I got my first set of real glasses this year for my birthday and my lack of focus (literal focus) and as the year has progressed I’ve been worried about my eyesight getting slightly worse. I found a fabulous one locally who was extremely thorough and raised concern about my swollen optic nerve. He said normally, if someone walked in and showed this type of swollen optic nerve, he would tell me to go to the hospital and get an MRI quickly. There can be many causes but sometimes it does show signs of a brain tumor. Basically go get it seen to. Luckily my Neuro appointment was in a few days so send him the images of my optic nerve and waited for instructions. (oh and I got a new prescripton- my eyes were getting worse just with age and what my eyesight was doing).

I got an MRI and saw a Neuro-ophthalmologist (Neuro & Eye specialist). What was clear, I had swelling in my optic nerve and it seems its coming from too much fluid in my spinal fluid. And where there is too much, it looks for a way to come out. The eye was the goal! And was starting to give a bit of pressure. Good news was the MRI was clear - no brain tumor in sight, and all very clear. Also all the eye tests showed that the pressure wasn’t affecting my eye sight or causing any issues. It all seemed ok but we still have to reduce the amount of spinal fluid.

The test was at the next treatment - they would put a gauge on when they got into my spinal fluid sack. If the pressure was over a specific amount (40) they wouldn’t give me my treatment of Tofersen. But if below that they would give me my usual treatment.

The rise in spinal fluid can be a symptom of the drug or when carrying excess weight. And skipping a treatment could be fine here and there. But overtime, we don’t want to skip too many.

The other thing would be instead of drawing out 10ml out of Spinal Fluid this time, they would take out 30ml. It would probably give me a pretty horrendous migraine/headache and I would need to be lying down for a possibly 2 days. Good times.

I went in for my treatment this week knowing all this and the pressure was 33. So it was under the max but over the normal which should be around 25. 30ml of spinal fluid was taken out (it was a slower process as it takes time to take it out - it has to be gradual - then they put the usual 10ml of tofersen back in. Apparently our bodies create about 300ml of spinal fluid a day so its quick to get you back on track. I was shocked I didn’t have the scary headache. I spoke to one of the nurses who is doing a study on the drug and she said that they have found that when they use a specific needle (basically has a blunt head ) doesn’t cause any headaches. If that’s the case, that is amazing. I was out of it for a few days but definitely on the mend now.

I’m taking more medication to help to reduce the excess spinal fluid increase… I opted for the one that didn’t give me cognitive symptoms like trying to find the right word. I thought no thank you - not in my line of work.

I’m feeling much better now that i know what the levels are now. For a while it was terrifying about the what ifs. Like I said in the last episode/entry - the constant living with isn’t this enough? I don’t want anything else i’ve got enough to deal with prophecy. But life just throws you curveballs. And I can either catch them, run from them or ignore they ever existed. And there is no harm in any of those coping mechanism as long as you know you are dealing with them and aware of the way you are dealing with them.

Now it’s been a year of treatments, I get asked a lot if you think it’s improving? I still don’t know. The treatment doesn’t really show much return until 2 years in. Do I feel weaker? Yes. I can’t walk too far. My Balance is off and i use a wheelchair on longer distances. Its a very fancy wheelchair. So if i look at that. Yeah. i think i’m getting worse. And that carries with it a mixed back of feels. But then if i think back to my NDIS yearly review and going through some of things I was suffering when i started with my Support Coordinator - There were about 4 things, I no longer suffer from. It was such an interesting conversation as, my Support Coordinator is with MND and when they usually review, there is often symptoms that don’t go away, they get worse. So they were baffled. And I was reminded, that some things have improved. Like the pins and needles in my legs and hands. Some numbness. etc. So the juries out. And maybe it’s just a day by day thing. But it’s ongoing.

The last thing I want to share is something we shared with the casting industry recently. Seeing i’ve been around a while and have had many auditions over the years from wonderful people, they have an idea of what i’m like physically. This year, I’ve been asked to audition a few times for coaches, players etc for rugby or football and that’s no longer a skill or feel of a character i can play unless they are in a wheelchair or sitting down the whole time! So we talked about doing a new introduction to the industry. Nothing bored me more than a talk to camera that was like “hello i’m now disabled”. So I thought about an idea to play with the ole 73 questions to vogue style vibe. I wanted to make it fun and show people how i move now. I brought in the perfect host, my dear pal Andy to help and for the final word, I wanted to share it with you. Its supposed to be tongue in cheek, fun, honest and entertaining.

So here it is for you to enjoy!

See you next time!

You’d think that when you get a shit disease. And let’s face it. It’s pretty shit. That you can be sparred the other stuff too. A couple of weeks ago I have had a pretty bad stomach virus that has had me wish I never wanted to see a toilet again.

A constant up every few hours whilst sleeping, quick run to the bathroom and so much white bread that I felt like I was 15 again and carb loading like no ones business.

Its not been great. And when you’ve already got a disease that makes you naturally tired all the time because your body works harder to just function, losing sleep with a gastro experience was not pretty and a little rude if I’m being honest. Haven’t I got enough to deal with then putting up with this shit? Figuratively and literally.

It was the dazed and confusion of it all. With not much sleep and not really eating for a long time, I could barely function properly and through that haze of thinking came of thought, is this what the end will feel like? Having no energy, not really knowing what was going on and this overall feeling of the body shutting down? Maybe? Who knows really but for now, that’s nowhere where I am. I am recovered now. It was 10 days of hell, but it really brought some thoughts and feelings with it.

There is an aloneness in being sick. For me, I felt the need to withdraw and subtract. To rest and not engage. It was too hard to and yes although family and friends were all there to help and check in, as a single man living by themselves, you do realize how alone that feels. There is an intense loneliness that comes on when you are so ill, one from the need to be alone and rest and another when you know you are physically by yourself. You are the only one dealing with what you are going through. And that’s a constant struggle. It’s difficult to ask for help when you are so independant and have been for about 20 years of your life. Someone who follows their own path and bulldozes their way through life. But it’s also difficult to learn to change that behaviour. Behaviour which you thought protected you somehow but really just built walls around the vulnerability of being cared for.

I’m in Bangkok currently on a joe job for Volleyball World - the world organization of volleyball - here for the Women’s World Championships and its been a refreshing and wonderful thing to be reminded of the caring nature of others. To get around at work, I’ve taken a wheelchair, as I can’t walk too far anymore, and there is a constant want of help from others. “I can push you”, “do you need any help”, which is lovely. There are times when its not needed and I want to continue to grow strong and push myself on the wheelchair but there are other times when it’s exactly what I need. And that’s the balance. Of finding the time that you need to be reminded of your own strength and building of those muscles, and the other when surrendering or really - accepting the assistance of others allows you to rest and be cared for. Its also a reminder to know when to ask for one and deny the other. And that is a continual battle. But one I’m trying to figure out.

It’s something I’ve been juggling since I started with NDIS (the Australian National Disability Scheme). Here I am trying to be independent and do what I need but there are certain things I can ‘t do and miss doing. Maybe I’ve said this before but there is nothing I loved more when travelling than walking down the aisles of a supermarket and just browsing the options and different variety of things in another country. I haven’t walked down the aisle of a supermarket in years. And that’s just a small thing. Learning how to give over to assistance of others to help you do an everyday task was a real shock at the beginning. And a challenge on my own determination to keep on going and to probably deny what was really going on for me if I’m honest but I’ve learnt to deal with this more and more. To push through vs to give over. The same battle told by different words.

My plan with the NDIS is up for yearly review and it’s an interesting thing to look at your achievements and goals and see how you are tracking with that. In a way there was a big acknowledgement to say I’m still going strong. As strong as I can. My beautiful support coordinator reminded me of the fact that I continue to work overseas and that is huge for what you are going through. And its a statement that I never really appreciated before. I am definitely pleased that I’ve been given the opportunity to still travel. 3 countries this year (Philippines coming up) to work or perform is amazing. And that i can still go and work eventhough i can’t walk so well. But there is the other side as always in my head that says, of course I am - why wouldn’t I be? The fact that I’ve got to fly back to Melb to have my monthly injection between Bangkok and Manilla is just a fact to me. But it is something to be proud of. The positive way of going yeah - that’s life. I met a Swedish team member in the lift yesterday who said, what happened to you and I said, Oh I’ve just got ALS. She said, “just”? in a what the hell type of way. “Oh yeah, I guess it’s pretty shit but that’s life right?, you just go with what you got”. I’m very aware that my carefree delivery of it wasn’t to shock or disarm it was just a fact. A matter of fact. I have this. It’s what it is. Get over it. The thought of it does make me laugh. Of course its so much more than that. And i have so many feelings about it. But sometimes facts are just facts. Not what I wanted. `it’s what I got. What am i going to do about it? Simple logistics. Naive perhaps. Maybe just delusional positivity. Maybe just how to cope. Maybe all of the above.

Updates on treatment

This last one was under Fluroscopy again. Had a lovely team on. Very good communicator of a doctor. Slightly rough. Had two extreme nerve pain situations down my left leg as the needles went past the point of the local towards the spine where all the nerves lie. They said, that can happen as the nerve sit around it. I bit my tongue as I wanted to say, yeah, but 10 times before that its never happened with other doctors but that’s ok. Other than that it was fine. Sore back for a few days from the needles sticking in. I do get asked if its working by pals. Right now it’s a long goal. Have I noticed a change for the better. Honestly no, but `i presume it’s working. It’s stopping toxicity from going into my body so over time, the less toxic protein in the nervous system the better right? So lets see.

Updates on life

My show is back in Melbourne. The same production we took to San Francisco is doing a mini season (5 shows only) at Melbourne Fringe. Tickets are selling well and if you want to see me in stage again come along. Tickets are here: https://www.melbournefringe.com.au/whats-on/events/member

We are also working on a new version of our show THE DILLY DALLY OF DEATH & DYING through Kingston Arts Centre. There will be public workshop if you want to get involved with the show. Check out www.fairlylucidproductions.com for more details in the next month!

Thanks for reading!

Again, if you have any questions, please let me know. Nothing is off limits.

The winds of change have arrived. Shifting and moulding consistently. What we think we know and how we think can and should be altered like the tectonic plates we stand on. Sure they may be microscopic at one point or another or otherwise they could be like a tidal wave ready to crash everything we know down to the ground to begin again. There is an evolution of sorts, a swing, a pivot, a new beginning that occurs in the way we see things over time.

Whatever your phrasing we all understand the concept. In theory. Whether we practice it or fully commit to its reasoning is up to you.

My consistent hospital visits remind me to adapt, or rather force me to. Waiting for a procedure that is urgent in terms of my life and helping me in theory live longer is not urgent on the day at a hospital where people are fighting to survive in that moment. My procedure usually gets pushed back a few hours. The last one was about 2.5 hrs of chilling out before going in. In fact I’m typing this now in a big leather chair with large arm rests in the middle of a waiting room where I’m privy to way too much information about other peoples lives and medical complications.

It’s a fascinating character study of those who care, those who are frightened and those unaware of the severity of the situation. I secretly love being there. Taking it all in. A new found respect above the already admired professionals in our health care system. From those in admin, transport, nurses, doctors, consultants. There are those who are open and beautifully and naturally present and caring. And there are those whose function is the medicine. The practicality. Method is their care. And there are those (only few) too arrogant to care about either. Then there are the patients and family members.

I feel like a fraud sometimes sitting here. I’m here all the time. I in theory know what I’m about to get into. Most don’t have that luxury. Most are sick and weak and are there for further testing. Unsure of what is happening or what tests are like or where to find a vein. Everyone is anxious, you can feel it. The waiting game to be seen and wonder what is wrong, if you’re ok, if you’re ready to go home, if this is the beginning of something more sinister.

The energy in the room changes every moment. Some days everything is behind, every procedure, every check in and you can feel it’s a bad day for everyone. Most people are still absolutely pleasant of course but you can feel them wanting to catch up and finish this day off as soon as possible. Other days it’s fun and silly. It depends on so many factors. The first couple of times that was the vibe. A feeling of ease when you are at your most vulnerable. Which was a lovely way to ease into it. Lately it’s the other end of the scale. People are still lovely but there is a level of underlying stress. Things change. Maybe that’s because I’m used to it or its because I have something to compare it to. What we do experience and what we learn can inform each other. It changes the answer of whether a glass is half full or not dependent on the moment.

Our knowledge winds back in on itself like this stunning architectural feature at the Art Gallery of Ontario designed by Frank Gehry, the staircase that provides a functionality (of moving people from floor to floor), but allows an experience of standing back and taking it all in to find a new perspective.

Since all this began I found it hard to do anything creative. More as an actor rather creator or writer.

I mean we created a play about the experience. We were creating a play about life and the death and the fear of talking about. And my life found a way to seap into it. Creativity gave me a way to navigate and understand my thoughts and feelings that were coming up. It was what I needed at that time. And the team we had was an absolute joy. One of those crazy times when everyone involved came with open hearts and supportive arms to hold each other up and work through our own insecurities. It was bliss. In that show I played a heightened version of myself. But it wasn’t performing. It was me. Where I was. And how I felt. I was open and present and telling my truth as it was then. But it wasn’t acting to me.

When I went to San Fran for the festival to perform I was petrified. I hadn’t ‘acted’ since the rug felt like it had pulled out from me and I wasn’t sure that I could do it again. Doubt creeps in when you least expect it. My performance training started at a dancing school when I was young so I had always related performance to being able to run around if i needed and when my mobility changed to not really being able to walk unassisted how could I do what I knew anymore? How could I really be present without everything working the way I used to know? The glass was half empty.

But I went back to basics. I threw myself into an Alexander Technique one on one before hand and was reminded of my body and what I can do rather than thinking of what I couldn’t. I think its easy sometimes to go with the bad rather than the good. When you are consistently reminded of the limitations of what you know, you can easily swing into the oh I can’t mindset. This session was a game changer for me. It woke me like I was coming out of a cloudy fog of reality. I was so positive about other things and getting through but this was a small roadblock I needed to get through. The show itself and the run in the states of a show that I’ve performed quite a lot, a show were 13 characters seep out of me felt like coming home but to a new residence I hadn’t been to before. New things were found because the impulse of moving around the stage was forced into performing from a chair for the whole show and I got to explore telling the story again. Communicating with an audience and working on my objections in a way I had forgotten how to. Back to basics brought me to life again.

But with it also comes questions. To get work is hard enough. Its about talent, and timing, and connections. Sometimes it’s hard to see yourself on certain things. TV, movie. Can I see myself in this? There’s doubt. Its hard not to pigeon hole yourself as a performer based on your look, your feel, your experience so far. In Australia, my casting is usually chubby funny guy to put it bluntly. “Man, slightly unkept, bit of a fool, has comic timing”. Its specific. And general. It’s the usual. I remember when I went to do my Masters in the UK my teachers kept saying, that’s not you. You are have more than that. It was a constant weird conversation of what I do get work as vs what they saw in me. And they are right. But now I also think… wow, I’ve gotta add in a disability into the mix now. And that may sound horrendous and it’s no judgement on disability at all but its rare to see people on tv and film and the stage with a disability. It’s changing for sure. But it’s very slow. So when you start thinking of trying to get work prior when that was hard enough and then add something new into the mix, its hard not to think, oh no, this is going to be impossible. And I hope that is completely wrong. For sure. But it is a thought that the dreams you had when you saw yourself as one thing change when you physically change into something else.

So my drive for performance work has definitely wavered. For years it has been a sole focus. My career. Everything drove it. Every decision, every thought of what I could and would like to achieve. And for the past 9 months, I’ve lost that. I’m not saying it won’t find it’s way again into a new version, but for now, its changed its perspective or it’s place in my life. Focus is about getting through the moment rather than the future. And that seems correct for now. Even though they go hand in hand.

I’m still discovering what I need. In that work, you need to communicate what you need in access requirements but if you’re still working that out yourself, you need to take the time to experience and find it. I’m trying to do that and that’s kept me from putting myself out there more than I usually would. Reflection and discovery. Out of the loss of something comes the clarity of other.

What do I really want? Who am I really? What do I leave this world with?

Big thoughts. And time to think.

For now there is this vision of sitting in a nice house or apartment looking out at an ocean or body of water, and writing and cooking and gardening and enjoying this time. Hoping I can find that again. I have no doubt it will come back somehow. I just don’t know in what capacity that will be.

It makes me whole. And if San Fran was any indicication. I’m ok at it too. So that’s also comforting.

So this month is about looking at the two sides of the coin. Whether what is right or not. It’s about being able to look at something and find your truth in it. And the reality that that changes all the time even when looking at the same focus point. What we see today may change tomorrow. And that’s ok too.

As for those for the update on the treatment this month. My 11th injection so far. It was a different one for me as it was done under Fluroscopy rather than Cat Scan.

This is what a Fluroscopy looks like. The bed and the xray move around you. It feels very high tech. Also the bed can jolt you around a bit so that’s the weird part. Especially when you have to be perfectly still.

This months edition was a little late due to an emergency. So waited for about 2.5 hrs past my appointment time. As we went in they decided to go between my L3 and L4 of my spine rather than L5 and S1 so it was a little higher than normal but they had a clear pathway so that was fine. The Local injection was jarring as always. Then the needle went into towards the spine pretty easily however, part of the flurocsopy machine hit the needle sticking in to my back. Like a light touch, but enough to be like, whoa nelly, be careful there. Because that part of the machine wasn’t sterilized they had to take the needle out and put another back in. I got another local and they did it again. The only person able to put in the medication is the consultant so we waited for them to finish their emergency and come administer the injection.
A word for all consultants, when you have a patient who is lying awake, looking away from you, maybe just come around and say hello to their face so they can see who they are talking to. Just common courtesy to say Oh hello there, rather than have already touched you from behind and give a few minutes before they actually say hello behind you. I nearly said something and will next time. I just hate that.
That being said, for the last 10 times, I have had a headache as soon as they have entered into my spinal fluid or have administered the drug into the spinal fluid. But as the consultant said all done, I was relieved to know that no headache had occurred. So a win for no face consultant behind me. You can come again. The site of the injections were tender for a few days post but apart from that it was a pretty successful if not long wait session at the hospital.

My next one is in two weeks! Wish me luck. I’m enjoying the pick ups afterwards too. Each month I mix it up who picks me up (someone has to sit with me for an hour afterwards and I can’t drive post injection). It’s such a lovely way to see people and hang out for a moment.

Till next time x

We learn that the more you do something the easier it gets. It’s a simple fact that I’ve lived my life by. Do do do or die die die. 😉 Practising a skill makes you more equipped. It makes you more confident. It makes it easy.

Going into treatment must be the same. I am going in every month, I am going to get used to this. Every trip will be easier to get through because it will get to a point where I know the perfect way to make this effortless. That feels like a project. A challenge. And I love a challenge. I will rise to that occasion. The competitive nature will kick in and I will nail this. I’ve got this!

The most questions I get asked is about the treatments I’m receiving. How are you? How are they going? Are you feeling better?

In my head I think I put treatment equal to the word fix. A cure. A solving of a puzzle or an end to something. Some completion of a problem rather than the real description. Which is receiving medical aid for an illness. The provision, coordination or mangement of health care or services. Sometimes you have to change the way you think.

Lets get into the nitty gritty. This month we are going to really talk some medical jargon. A lot I had to look up and some I know from experience. So strap in.

I’m very thankful for my treatment and I’m very lucky to receive a drug called Tofersen.

Tofersen was developed to treat amyotrophic lateral sclerosis (ALS)/Motor Neuron Disease (MND) associated with a mutation in the superoxide dismutase 1 (SOD1) gene.

Again… just as a recap - Healthy SOD1 proteins help break down toxic byproducts produced during normal cell processes. These byproducts must be broken down regularly so they don’t damage cells. Mutations in the SOD1 gene are thought to cause the protein to misfold and clump up (aggregate) within motor neurons and astrocytes, the types of cells involved in ALS/MND development and progression. These clumps (aggregates) may interfere with healthy cell functions or may cause other necessary proteins to misfold and lose their function, damaging the nervous system and leading to the development of MND/ALS (als.org). Which is what I have.

In 2022, after an extended trial it was found to lower levels of SOD1 protein, lower levels of neurofilament light chain (a marker for nerve damage) and participants who received the drug earlier and longer - lived longer than participants who didn’t.

I’ve got this in the bag!

So how is it administered?

It is administered through a lumbar puncture under CT Scan. The doctor inserts a thin needle into the space around the spinal cord in the lower back and injects the drug after taking out some spinal fluid.

What is a lumbar puncture/spinal tap?

A lumbar puncture collects fluid called cerebrospinal fluid (a fluid that surrounds your brain and spinal fluid).

You get asked to lie on your side in a curled-up position or to lie on your stomach. This position helps your doctor access the space between the bones in your lower back (vertebrae). After your back is cleaned in that area, local anaesthetic will be injected into your lower back. Once the area is numb, the doctor inserts a thin, hollow needle between two bones in your lower spine. You do feel some pressure as the needle goes in.

A small amount of fluid will be collected. Once the procedure is complete, the needle will be removed and then they cover it with a bandage.

Talk me through what happens when you are there.

So now for the real talk. Generally my treatments are in the morning. I arrive 30 mins prior to ensure I’m there on time and relaxed. I’m not allowed to drive so I usually catch a cab there. Then -

• Meet with the fabulous staff and take a seat inside where I have my blood pressure checked and pulse taken and go through the usual hospital sign in experience (what meds are you are on etc, what’s your details again, who are you?), take your top off and pop on a very sexy blue hospital gown.

• Wait for someone from radiology to come by and go through what we are doing and run through the risks before you are asked to sign the agreement that you’re aware of all the things that could go wrong but there is only a very small percentage that is the case.

• Then it’s time to go into CT Scan

• The doctors and nurses change to who is on shift, so its not always the same people doing it. Of course I have my favourites. I mean who doesn’t. But you deal with who is there at the time.

• The staff will usually go through how the doctor wants to deal with it today. They all have their own technique. Some prefer you on you stomach so your back is up and your feet are going in and out of the CT Scan. Others prefer you on your left side feet going in and out of the CT Scan. (this is my favourite). Another had my head going in the CT Scan and lying on my front. Hated that. I try now and talk about what I prefer. When you have had so many, you do know what works for you and what doesn’t.

• Once in position, you get your blankets on or extra pillows to keep you still and you go in and out the CT Scan so they can find the easiest way to get to where they need to go. This is things like avoiding nerves etc because you don’t want to hit those! For me it’s usually quite low down the spine near the L5 and S1. Its the closest area from spine to the skin. Less distance to travel. I mean the simple thing to know is that if you are a bigger person (carrying more weight, the longer it takes to get to where they are going). Occasionally I have had it between my L4 and L5 it just depends on the doctor that day. And if its there, I’m usually lying on my stomach.

• Then the area where they are going to insert the needle is cleaned and marked up with a little skirt. A little barrier they place on the back like a rectangle to keep it clean.

• Now comes the local. This is the crap part. It probably is the thing that hurts the most. But only for about 40 seconds or so. Sometimes a nurse pats your hand and tells you you’re doing great. Others just let you go through it. Its a sting in the back because lets be honest a large thin needle is being driven into your back.

• The doctor sitting behind you as you look to the wall away from everyone, waits for the local to take affect, to numb the area and chats with the others about what they need as the nurses prepare the utensils and doses.

• Then they come back and focus on you and put a thin needle slowly into your back bit by bit. Then stop. You aren’t allowed to move. The bed slides into the CT Scan so they can see where they are going and to ensure we are on the right path. Sometimes it isn’t. So they have to pull the needle out and start again. The path needs to be clear of nerves and for some reason in my head I always thought there would be a perfect way. There is an ideal path set out we just need to find it. But it changes. It changes to how you are that day. How your back is. How the muscles are around that area that day. How the doctor is doing that day. There are so many variables that it changes each time. You’re aware of the needle and if it has go through muscle it will hurt. I’m not sure if I have a high pain threshold or not but I think I’m ok.

• When they get to the point they need to go, they then insert a smaller needle within the needle and extract 10 mls of spinal fluid. The first time it happened it felt like they had tapped into my life force. I felt it in my head. And all through my body. It was an odd sensation. I haven’t had it for a long time. I do remember my headache started as soon as it was in. The doctor said, we are in your spinal fluid now and I wanted to say, I know. I could feel it. But now it changes. Sometimes I know they are in there, other times I don’t. The last time I had it done, I got a tickle in my throat when they were in there which caused a cough which mean that the needed went out of where it should be so we had to find it again. So it just depends on the day. I’ve been asked to cough before when they were at the fluid but nothing was coming out and for some reason that starts it. You start to wonder, did i have enough water today… maybe that helps. Fluid = fluid right? Who knows. Once they have their 10 mls, they take this off for testing to see how things are going.

• Now it’s time for the drug itself. Usually 15 ml of Tofersen is then put into my system through the same means. If the headache hadn’t started prior it starts now. As soon as it enters my system, the headache always starts for me. It’s not huge but its about 7 on the scale of 1-10. Sharp. Annoying. I never in my life had headaches or migraines until I started on my medication. Its just a fun side effect. But I was told that i should have some coffee, or cocacola or dark chocolate to help. And also lie down obviously. So win win on those fronts. I only used to have an occasional coffee it was served in a martini glass with some vodka and kahlua. Oh boy, how things change!

• Once completed with the dose, they remove the needle and pop on a bandage. A big square bandaid type seal.

• When in the room (CT Scan) that procedure can take anywhere from 30 mins to 60 mins depending on how well they get into the spinal fluid. Most have been around the hour mark, but occasionally you get a lucky everything worked out fabulously and we were lucky at getting it down quickly. There is no rhyme or reason. Just a lucky day when everything aligns.

• We say our thanks and then I move on to a bed on my back and get wheeled into the waiting room to rest for an hour, whilst i have my vitals checked, have chats to the nurses, eat a sandwich or crackers and check my phone alot.

• Once cleared I head on out, get a pal or someone to pick me up and drive me home and we catch up for about an hour before I get on with my life or relax.

How do you feel afterwards?

It really just depends. There’s the headache for one. It happens every time. I usually have a couple of panadol and it’s all fine. When I started having them done it was when I was very busy at work so I would have treatment and then after the catch up/pick up with my pals I would go back to my desk and work and be fine. As they go on I get more fatigued. There are days that the fatigue hits early in the night and I just need to rest or go to bed early. Other times its not much at all and all it is, is feel a little tender on my lower back because of where they put the needles in. But the saying I keep saying is “its about an hour of not great for hopefully a lifetime of good”. I definitely am a bit weaker for a few days post. So I just try and relax as much as possible.

Does it get easier?

I thought it would. Practise makes perfect right? I’ve learnt that it doesn’t. It depends on how you are feeling that day. How your back is that day. Did I sleep enough last night? Am I relaxed? How late are they behind at the hospital? What the energy in the room is like? Did someone else have a bad day or evening prior. There are so many possibilities of things that are out of my control and so I just have to give over to it. I try and meditate whilst it’s happening. I say a mantra of something like “you’re ok, let the needle find it’s way to where it needs to go. You’ve got this. This is all to help. you feel stronger”. But that also takes focus and skill. To stay connected and relaxed as long needles are shoved in your back.
What I’ve learnt is what I like. I like to be calm. I like to have a warm blanket as it gets cold in the room, I like to have a pillow between my knees and under my head whilst I’m on the table. I like to know what’s going on. I need the doctors to communicate with me during the procedure so I know when we may be approaching a muscle that it may hurt as we puncture it or if there are complications and its taking longer than it should. Not knowing or having other people talk about me, for me, like i’m not present is very much not what I enjoy.

Most of the doctors have been amazing. One wasn’t. When asked to communicate with me, they said they would try. They didn’t. And so now all of them get my feedback. We work together. I am here in this room. I am present and am in that room once a month for potentially the next year and a half if not longer so let’s figure this out! Most doctors need to learn how to talk to patients or rather how to listen to them. Some are amazing - hence my favourites.

Has anything bad happened?

Not really. Althought there are a chances of things happening and definitely I have had two of those. One is the headache. That is a given every time. That’s not bad, that just feels like it should seeing they are playing with the levels of spinal fluid that go through your brain etc.
The other was a spinal fluid leak that I had one time. Normally if they know they inject blood into the site and it heals it up like an internal bandaid. However when it happened to me there was a lot going on. I was exhausted. And stressed. I had travelled back to Melbourne to have the treatment done and had fallen over at the airport. Usually when you fall over your body sends all the healing to the parts where you fell to protect it. I then had my treatment done and if it happened then my body was probably too busy helping the parts that fell that it couldn’t protect the leak that occurred.
I flew back to work a few days later and everyone i knew was sick with a flu like I had never seen, so when the whooshing sound around ears started going consistently like the feeling you were in the loudest wind tunnel you had ever walked in and the only thing was to lie down horizontal for it to stop spinning, I just thought I was getting this horrendous flu. I wasn’t. I most likely had a leak. I thought I had some inner ear infection. So that’s good to know the diference now so I can get that fixed quickly if I had to. Most of the time when you’re going through this, everything is new so you just don’t know until it happens. Which is a constant joy ;) But it has caused me to listen more to my body than I ever have before.

Is it working?

That’s a great question that I just don’t know the answer too. The studies that were done on this drug originally looked a brief period and showed no signficant difference but when they extended the study to look over two years, it showed major differences. I’m six months in. So I can’t tell you.

I feel weaker currently. My balance isn’t great anymore and although I walk with two sticks I can’t walk too far without getting exhausted. I can’t walk unassisted. I have to hold onto something in case. My left foot rolls onto the left side because the functionality to turn it flat on the ground isn’t there. The message from my brain is there its just not making its way to that spot. But we work on my balance and functionality with my trainers, physios etc.
I’m hoping to have a manual wheelchair soon to give me more access. In my head I had this real stigma against wheelchairs because I had associated them with giving up I think. But weirdly its the opposite. I took one when I was over performing in San Fran and it was a game changer. It gave me more flexibility, more ability to do things on my own terms. I wasn’t concerned about falling or not having the strength to get back to where I needed, I was safe and ok and in charge. And that was amazing.
So is it working? I’m sure it’s doing exactly what it needs to be doing which is stopping the toxicity in my body. And the less toxicity I have over time will only hopefully help my body do what it needs to do.

How many has it been?

I’m now up to number 10. I’ve had nine lumbar punctures within six months. Three the first month then one every month after that. In numerology the number 9 is powerful. It symbolizes completion of some sort. And maybe thats where we are at. The completion of a thought that no longer exists. That before - I imagined this was the golden answer to solve all my problems, that hopefully it would wipe away all my fear and anxiety but really it’s something that assists in the aid of it. It helps slowly and surely to improve the path ahead.

And for that I can only very grateful to be part of a program that can provide that.

Any questions you want me to answer? Or topics to talk about… Pop em down below. And thanks for reading.

Here’s to health and happiness

As a kid I used to think I would die young. It wasn’t a hope or a wish. It was more of a thought. Probably a call for help. The death in my head was never from something horrendous, more like something sudden or something quick. Something unexpected. Something that would make people feel sorry about me leaving this mortal coil. I remember thinking it. Hoping that it would happen somehow. In some way, so people could see what they were missing out on. It never really played out a like a scene that I could cling on to but I remember thinking it might happen. Unexpected and unclear. Everyone was sad. Distraught that someone had been taken before their time. That I had died before people got to know me. Upon reflection it was a thought of a scared boy wanting to be liked and be popular and thinking the most dramatic thing he knew could happen from what he’d seen on tv or film etc. It was what he knew. It’s what I knew and for some reason at that time what I wanted. That was a very very long time ago now.

But I think about that now - in the middle of this all. And so that sits in my head as I wonder - did I manifest it somehow? Or did I know deep down something may happen? Or am i just trying to make connections because joining thoughts allow us to process the why’s. All valid questions and thoughts. I’m probably leaning into the last one.

However - I’m jumping ahead.

Last year, I weirdly felt like I came out or rather had to come out to the world as disabled. Its’ a weird thing to think about. But life had given us a weird time. We were locked away for many years and I came out of that time different to what people expected. I would go to the theatre or something and there would always be someone almost like clockwork that would say, “what happened to you? did you fall down? Were you drunk? Dancing too hard?” It was always odd behaviour I thought. What a random thing to say. And you don’t know me at all do you? I rarely drink. I rarely have for long time so that’s not it, and no you idiot, i did not fall down or have a fall or trip over…. it made me so angry that the common denominator for most people was to joke about it. Mainly because we don’t really want to hear the truth. It’s easier for people to make it a joke. Because reality is too much. We make light of something because its easy. Or maybe a better way to say it is - its easier not to feel things or hear the hard stuff.

So after some deliberation I thought, you know want I want to talk about it and I was about to see some people I hadn’t seen for many years. At the time of that ‘coming out’ last year (2024) - I was creating a new work about death and dying with my company Fairly Lucid Productions. We had all been through so much over the past few years and we didn’t know how to talk about it. But for me, what I discovered in the development of it was it was also a way of me coping with what I was going through. So I had to become accustomed to being more honest.

With a post on instagram describing what happened to me over the past few years and to alleviate any awkward conversations with friends (mainly for me answering questions). It started with these words:

“For those who haven’t seen me for awhile - some things have changed. Life has thrown me some major hurdles over the past few years. And so this is to assist when you see me next, so it doesn’t come as a shock or at least alleviates the awkward banter.”

What it alleviated was the ability for others to really have a conversation about it. In my quest to be more open, I was actually stopping the conversations because I think to me it was still too difficult to comes to term with. Why me? Why now? Anger and sadness. All rolled up in one. Multiple feelings all at once. And although it was good to tell people I didn’t realize that three months after that… all that I thought and knew was about to change again and I would have to do it again - come out with more information about what is happening. Hence why we are here now.

So - lets go back in time.

If we take ourselves back to 2020 at the start of the year, life in theory was pretty fabulous. There were rumours of something happening overseas, but in the summer of Australia, things were ok. I just moved back from the UK after doing my Masters at Royal Conservatoire of Scotland, feeling on top of the world. I never had been more confident in terms of what I could do but also so fearful about what is next. I was turning 40. I was severely in debt thanks to international school fees but a commercial I had shot many years before went to a new region and wiped out all my debt, and popped me in the best position for the year. I worked out with my housemate at the time so much I never looked better - thanks Sarah! Yes the world was caving in around us as COVID hit and lockdowns became the new thing to do. But i was at my fittest, happiest, luckiest - I landed some new acting gigs in Melbourne thanks to my new svete figure and confidence boost and was just doing fabulously. Those first 6 months were weird yet wonderful. Despite being locked in, as I sat on St Kilda beach and looked out to the endless horizon of the bay I thought this must have been the same feeling for many, out there beyond that horizon so many possibilities can exist. I wonder what will come my way.

I moved house to a glorious spot and was ready to take this new energy into the next endeavour. Walking on our 1 hr allotted time out from our lockdown around Maribynong River, my walking buddy said “what’s with your limp”. “What Limp?” I said stupidly, thinking nothing of it. Must have just pulled a muscle in my home gym and that F45 at home routine.

When a practioner asked me to stand on my toes - something i could normally do in my sleep from all the years of dancing as a kid, I tried to rise up on my tippy toes like the ballerina I thought I was in my head and realized, I couldn’t. I wanted to. But my body was just not letting it happen. Weird.

What happened? Did I forget something? Did I imagine something happening?

The first neurologist I saw uttered the words, “as an actor, you didn’t notice your body changing? I find that that weird that one who has such knowledge of movement didn’t notice”, I thought maybe they are not the one for me. Maybe the fact that we’re locked in our houses all day and all I do is walk upstairs, downstairs, to the desk, kitchen, toilet, couch and bed doesn’t give me the greatest testing ground for my movement skills. But then there was definitely the thought of - why didn’t I? Why didnt’ I notice.

Fast forward to endless specialists, CT scans, spinal taps, x rays, blood tests, nerve conductive tests, many neurologists, we came to the conclusion after a few years when nothing got worse, or got better we put a diagnosis on it. It stabled. I had a foot drop on my left. The brain pathway going to that leg between my knee and my ankle just wasn’t working. I could walk - I just was prone to falls. Which I’ve done more than I like to. I get it now. How falls take away your confidence. At this time the diagnosis was MMA, (sadly not the mixed martial arts variety) but a benign version of motor neuron. No one knows how it’s caused & there are no treatments so it is a world of unknown possibilities. And although it can’t really be a set in stone diagnosis, it was a very educated guess.

Medicine is a funny thing. I think in my naivitity I thought there is always someone who knows the answer. But sometimes answers are guesses. Just ideas - yes based on a wealth of information but it’s not definitive - its not locked in stone. And that baffled me. I always looked to that profession to know everything. And not to get me wrong, the people who work in that profession know so much information and have great instincts but some idea in my head that I had since I was a kid had now been broken. And that intrigued me.

For me, it never quite sat well. Maybe because there is the question of - is that right? There is no test for it. There is no definitive answer. So how do we know its right. Somewhere deep down, I wasn’t sure. And although it felt like a pilot light in my body rather than a full fire of an idea. It burned somewhere inside that maybe there was more to know.

I went back to Edinburgh in 2023 and performed a full season of my play MEMBER. I could walk ok but not too long. I wasn’t great with stairs. I could only go one step at a time. Right foot. Left Foot. Hold the rail. Repeat alot. I rehearsed two weeks in Glasgow and then moved to Edinburgh. Each city I lived in a 3 storey walkup. Not great but to be honest I’m not one to shy away from a challenge. Even the bloody rehearsal venue was up a full flight of stairs. Note to self - stop forgetting you have access issues when producing a show! I’m not sure if it was the show, the consistent stair climbing but my body was getting slightly off balance. Slightly frail. A pal of mine had started to use a stick and suggested I grab one to help. I thought why not. It will definitely help with those damn cobble stones. I took Ubers everywhere. Getting to and from venues were too difficult. Public transport wasn’t an option and walking a distance wasn’t good either, so your budget blows out a bit just to get you around easily. I had the best time. And the hardest time. And the best holiday afterwards. I noticed that when the adrenaline of my body from the opening few performances really affected my nervous system and therefore my balance. I needed to hold onto chairs and anything i could grab because my legs felt weak. But the more i relaxed the more i was manageable. I came back to Australia so proud of what I had accomplished and so tired in the same breath. Also stuff economy travel on long haul!

A year went past and I couldn’t get on top of how tired I was. I always thought i was just trying to find a time to rest. I am my own enemy in taking time out. I love working, I thrive on keeping busy, so I was just keep ticking through next project after next project. I was looking for the next endeavour. If this is how I move now, and this won’t change, then what do I want my life to look like. I came up with a plan. To move interstate. I had a business plan that would take me into my next chapter of my life, and would fulfill me personally and professionally and gather up all my skills from everything I’ve ever done. It was a good plan. I got prepared. Got everything ready. So many big things. But also a time to just heal and get away for a bit. A change of pace. And I couldn’t wait.

In 2024, I was off to Europe for a wedding, a 50th and a challenge to myself to have fun and enjoy. The day I was flying out I had my yearly check up with my neurologist. It was the first time he had seen me using a cane. He asked me how I was doing. I explained I felt tired a lot. He looked concerned. We did some tests and after many years of things not changing, I realized it wasn’t just me feeling tired. My body was having more of a hard time working. My left leg had now weakened and the right side, which had been my rock and the most stable was now starting to detoriate too. Oh shit. This is bigger than I expected. Something wasn’t right. And I knew it. As I was flying out that day, we decided to get some tests done when i get back. But for now, upon doctors orders was time to not worry, just to have fun on my 4 week holiday and go through everything when I return! Just enjoy yourself.

Impending doom. Joyful thoughts. Don’t think about it. Fine.

When I got off the flight in London after sitting myself in Economy as usual, I got a cab to the hotel and thought I’ll just cross the road to get some water. I started to walk and as I took a few steps, my body felt it would collapse. Right. Not so great. I went back into the hotel.

The doubt started to seep in. How am I going to to do this? I spent the first week recovering, relaxing and stretching and catching up with pals and family members after getting ubers to join them.n Seeing shows and feeling inspired. But going from one destination to the hotel. Hotel to another spot. Uber loves me. Feeling weak takes the winds out of your sails. How the hell am I going to this? This trip was going to be difficult - there were a few stops that would be fine for sure. But then I was taking myself to Venice - not great for the accessibility and some other big destinations. What am I going to do?

I’m a determined fellow. I don’t do things in half. I got another stick because it was taller. The one I had wasn’t my height. I just grabbed it from Amazon. I didn’t know any different. So for that first week in London I locked in every appointment possible for when i got back to Melbourne so I could get the answers I needed. And just enjoyed the time of quiet. My cousin reminded me - you’re not the first person with accessibility issues travelling so do the research and you’ll be fine. Onwards and upwards right?

The trip was amazing. The wedding, the birthday, the sights, the bank balance (terrifying)! I cried when i got into Venice. It felt like it wasn’t in my reach and it was taken away from me but through determination I made it. And I was so proud of that fact. I took a private boat with a scissor lift. One word of advice… Putting someone with balance issues, on a scissors lift, on a boat, that is sitting in choppy water with no rails is ridiculous, but I grabbed that burly italian sailor like no ones business and life just got better after that!

Trying not to think about things is difficult. It permeates the air around you and ferrets itself like a parasite not wanting to move. You know you shouldn’t think about it. But you also have an active imagination. And you know that something isn’t right. You can feel that somewhere - in you. Like some clarity of thought. What I have is more than what I know. So you flit between the good and the unclear. The moment and the fear. And try and find a balance of taking everything in. Because who knows what is going to happen next.

I arrived back and thanks to my forward thinking/planning and great admin skills I went into a multitude of tests and appointments pretty much straight from the airport. I think I had a CT scan the day I arrived home. I wasn’t going to waste any more time waiting for answers. I was going to hit every test quickly and efficiently as possible. I sent my bloods and saliva off for genetic testing in WA. (side note - is that where they all live? Why WA? so many questions). I met with so many different people. It was a busy time.

Then at 7.30am on 3rd September 2024, I had a telehealth appointment where I was informed they had found something through my genetic testing.

Finally an answer. A true scientific answer. Something definitive. Medically clinically sound. I could lock this away and finally have clarity. There is nothing as satisfying as clarity. The diagnosis was that I have a genetic disorder that gives me a mutated SOD1 Gene. We all have the gene but mine was faulty. What that means is that my gene secretes a toxic protein into my nervous system, and that in turn gives me Motor Neuron Disease. I’m sorry.

Silence. Defeaning like glass shattering. Wait… what?

I remember researching it back in 2020 when this all started. Because my symptoms came on very quickly, my medical team were worried it was MND. But there is no test for MND really. There is I guess. And that test is time. Watching and waiting for the body to change. If your body starts to shut down over time… then you have it. So for 6 months, during lockdown into 2021 I waited and studied every thing in my body mainly to see if my speech would go next. It is the most terrifying waiting game. When you are working from home and haven’t talked to anyone in days, waiting to see if you can talk properly you start to think… has something changed or is that just because i haven’t said a word for 5 days. Wild the more I think about it. That through all that time (2020-2021) going through lockdown and a diagnosis, waiting and watching. Having the most successful professional life whilst going through the most terrifying waiting game was a lot. But at that time… the waiting game showed nothing had changed. A victory. Now crudely taken away with reality.

Cut back to 7.30am on a Tuesday morning (I was born on a Tuesday… is that a sign?), with a very gentle, factual but caring Geneticist, who said, “you’ll talk to your neurologist tomorrow…. I know it’s a lot to take in but i’m just really sorry.” All I felt was numb. I finally got those movies where people are in shock and they can’t really make out what everyone is staying it’s just muffled noise.

When you type into google mutated SOD1 gene the first article to come up said this to me:

ALS. Isn’t that that icebucket challenge all the celebrities used to do back in the day? I know that one! Is that what that was all about. Oh i’m famous! I never did the challenge. Probably should have - would that have helped?!

When you read “death is within 3-5 years” you stop reading. Well I did. I know Google won’t tell me the truth of what the journey is for me. I can’t find my answers about my medical history on a google search. I will wait to speak to a professional who has all my test results and hopefully a plan of attack. I had to wait till tomorrow. To talk to my actual doctor, my neurologist who would have known more and more then I could piece together from the internet.

All I knew was I didn’t really want to tell anyone because I didn’t have the facts. For the past few years, facts were hard to come by…. everyone asked well what does that mean. And because there was no “real” diagnosis, some of the facts were non existent. I wanted to know everything so I could communicate it. This was happening to me and for me to understand it. I could then share it everyone else. I know how those around me can react and I needed to get all the information first. It is also about control. When your body starts taking control away from you unexpectedly, controlling the things you can in life becomes extremely important to you. And that is hard for people to understand because support or love or their own knowledge is their way of helping but to me, if I don’t have control of certain things in my life anymore, then what do I have left?

I was told the diagnosis, but was told I’d have more information and options when I spoke to the Neurologist. So I didn’t say anything to anyone. It wasn’t how I wanted to start my day either. I knew I was getting an answer but I don’t know… I just didn’t really think that was going to be it. I was silent and dazed until I met one of my close pals that day for their birthday and I felt it rise out of me like an emotional vomit. The facts. I cried. And then apologised. Happy Bloody Birthday pal! It’s not the present I wanted to give you at all. Right. So i am actually terffied.

That night I was in rehearsal for the play we had created about death and dying. Apt! Our director and I chatted about it on the ride over to rehearsals and I opened up to the few cast and crew in the room that something was going on and I may not be ok today. It was a relief to share but also I had nothing to hold on to in terms of clarity. I didn’t know what the doctor was going to say, i just had the feeling of knowing there was an answer but I didn’t know what that answer actually meant on me… if that makes sense.

The next day I went into my neurologist and asked to record our session.

Basically the main points I took away is these words in my head - I’m going to inundate you with a bunch of information so you can listen back. You’ve got a mutation of your SOD1 which in essence a type of Motor Neuron Disease. It is a slower neuron disease that is in your genes. It accounts for 2% of MND so it’s very rare. The silver lining to the whole thing is that in the last year a treatment has come out for it. For 98% of people MND is untreatable but this rare case has a treatment that involves genetic therapy in the spinal cord. A treatment given each month as a lumbar puncture that blocks the abnormal DNA. The studies have shown that over a 2 year period it did slow progression, and there were some cases of improved strength … and that’s the first time I’ve seen an improvement with any MND. Everyone has their own disease trajectory. And the worst thing is the MND label as what’s associated with it. The way I try to look at it is just try to see yourself as not a typical MND patient that we know of and we have awareness of, and if anything it's a slow one. It's still a neuropathy. And it's the only thing that's treatable. So if you had to have one…. I don't know. That's the spin that I look at it with. My hope is that this treatment gives you a life expectancy that is normalised.

I left confident of a future and clarity about the disorder that was seeping through my genes. And terror of whats next. And doubt of what if it’s not? I’m very lucky. My medical team is amazing. They had someone on this treatment already in Australia and I was put on it very quickly. But the fear ahead of it was a lot. What was it going to do to me? What was it going to feel like? What actually happens? I guess I’m not moving now right?! How can you leave your support network and family at this time. Time to find a new dream.

The telling of people close to you is hard. You present the facts. And share your feelings. There is no real ability to remain poised or tough when you are talking life and death. And your feelings about it.

Over the past 5 years I’ve done so much work in therapy discovering how i feel and trying to ascertain what I’m feeling all at once. You learn your habits, your responses, your behaviours that you have put in place to somehow protect you. Most of them don’t. The perpetuate hiding away from how you really feel. And like an onion, you try and peel them back to find the truth of the matter. How you feel.

I am an ongoing process. I’m still figuring it all out. But aren’t we all.

But for now… this as my come out is what I have and what I’ve been through so far. It’s going to be a place for me to talk about the experience, the treatments, the concerns and the stories.

The title comes from the drug that is inserted into my spinal cord each month. On it it reads “For compassionate use only”. The definition of compassionate is a feeling or showing sympathy and concern for others. This newsletter is allowing me an explanation. In the concern of others, it allows me to share my thoughts and fears and be present with all of it. At times it may be ugly it may be fine. I have no idea. I don’t know whats ahead and what will come out. I wish I had written this when I was going through it. But time gives clarity. I’m playing in restrospective.

I’m extremely optimistic that life is what it is for me as it is. I’m good and healthy. Yeah, my walking is a bit shit but I am doing what I’m doing and for the first time since official diagnosis I’ve had a moment to sit and process because I jammed life full of distractions and amazing accomplishments for the first 7 months but now… as we take it step by step, can we truly see through the beginning of an idea and find hope and understanding.

Ben

x

Ps. Leave me questions if you feel like it. I also started this for my dear family and friends who always ask how I’m doing each month. So here is where I will write updates and go through how things evolve

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