001: For compassionate use only

001: It all comes crashing down

Its funny the things that stick in your head. Those things that float in and out of the subconscious like some entity that changes with the current of your mind. Some moment or idea to recall. Its a constant thought of whether they existed as you think about them or have they been edited into something more tangible to suite your narrative. And do we ever know the answer.

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.

Why would you look back??

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:

The canonical role of superoxide dismutase 1 (SOD1) is as an antioxidant enzyme protecting the cell from reactive oxygen species toxicity. SOD1 was also the first gene in which mutations were found to be causative for the neurodegenerative disease amyotrophic lateral sclerosis (ALS), more than 20 years ago. ALS is a relentless and incurable mid-life onset disease, which starts with a progressive paralysis and usually leads to death within 3 to 5 years of diagnosis.

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