From the sidelines to the front line: A mother’s reflections on tackling spinal cord injury (SCI).

July 26, 2023

The reflections of Cheryl Harvey, as told to Melissa Hall 

Saturday 6 April 2003

Ben caught the ball, buried his head low and ran forward.  Watching on, I thought to myself that although he wasn’t that big, he was really determined.  

I couldn’t really see what happened next in the gangly mess of arms, legs, boots, and testosterone that is an under-17 ruck, but all I knew for sure was that a player had gone down.

My first reaction, as always, was to look for Ben’s headgear. Next to me was Helen Beer, the mother of one of Ben’s closest friends, also named Ben.  I turned to her and said “I can’t see Ben.”

“He’s there,” she responded.  It didn’t really register for me that she was talking about her own son.

Still scanning the field, I remember saying “the kid on the ground still hasn’t moved.”

One by one, the boys extracted themselves from the fray to stand with their respective teams, where they watched on anxiously.  There was still no sign of Ben’s headgear amongst the group, and my search grew more frantic by the moment. He wasn’t with them.  He wasn’t standing.  Before I even thought to move, I found myself at the sideline. 

The boy on the ground lay completely still, and the referee stood close, hand in the air, signalling everyone to stay back.  I took my chance to enter the field.

As I approached, Ben was lying conscious and calm. I entered his line of sight and before I could say a word to my baby boy, he uttered the four words that no parent wants to hear … “I can’t feel anything.”

One parent was already on the phone to the Queensland Ambulance Service, and it was immediately clear to everyone that something was very wrong.

The referee repositioned himself to behind Ben’s head, and immediately I yelled “DON’T MOVE HIM!”

“I’m an Emergency Physician,” he casually replied. 

“And I AM A MUM!” I was firm, but I was his mum, and I was terrified. 

Surely this guy could not be for real …. Surely, none of this could be real.

I rang Doug, I could feel that I was starting to lose it.

6th April 2023 marked twenty (20) years since the fateful day that then-St Joseph’s Gregory Terrace student Benjamin Harvey suffered a catastrophic spinal cord injury (SCI) playing his beloved sport of rugby union with Taylor Bridge Rugby Club (now UQ Junior Bullsharks).

I’m sitting with Cheryl at the dining room in the family’s Seventeen Mile Rocks home as she shares excerpts from the daily diary entries that she made during the acute-phase of Ben’s recovery and rehabilitation journey at the Princess Alexandra Hospital Spinal Unit.  For those who are unfamiliar, this is a process that takes the better part of eighteen months.  Today, Ben lives with a diagnosis of C4 incomplete quadriplegia.

“It’s funny reading through these tonight” she tells me.  “Not in the ha-ha way, but in the way that I remember working with young adults who had dealt with complex trauma in their lives, and they used to talk about the concept of a ‘flashback’.  Things that trigger these deeply repressed memories of a smell, a feeling or a place, and take you right back to a deeply traumatic experience as though it were happening all over again.  I had a theoretical understanding of what that meant at the time, but as I read these journal entries now, I can smell the grass on the field, I can feel my heart sinking, and I can picture it all vividly as the day it happened – it is like it has transformed my dining room!” 

There’s a lot that Cheryl has experienced in the past twenty years, and a lot that she wants to share with other families who find themselves embarking on the physically, emotionally and often financially straining journey of adjusting to life after SCI.  Though her reflections sometimes capture feelings of loss, heartbreak and guilt, there are also strong themes of resilience, hope and celebration.  

In her own words

That was twenty years ago.  I think an accident like this is every mother’s worst nightmare, and it is not a stretch to say that at that time, it was the worst day of my life.  If you must look for positives from that time, one would be that Ben was our youngest child.  It must be so difficult for parents whose eldest child suffers a debilitating injury or illness. How do you then meet the needs of younger children?  My daughters were strong women – then and now, but I can’t deny that there is some guilt that I feel about the fact that I went missing from them for a while.  Ben was the undeniable focus.

I could write so many words about the ways in which Cara and Kelli have been the glue that has held the rest of us together and motivated us to continue to look forward, but I could never truly do them justice.

For me personally, it was not the medical professionals that helped navigate this journey, but the support so many strong women.

It was the physiotherapist in the Intensive Care Unit who told me rather bluntly what the future would look like living with a spinal injury. Radical candour was what I needed at the time, and I felt like no one was giving us any information.  Her advice galvanized me into action. I researched everything I could about spinal injuries.  Like most people, at the time I naively thought the spinal injury was all about loss of movement, but soon came to realise how little I knew.

It was the mum who contacted me, whose son had suffered a similar injury a few years prior.  She was an absolute godsend.  She was a great sounding board as she knew exactly what I was going through and feeling.  Her advice to keep a journal proved invaluable. Not only was it therapeutic but it proved a helpful record of events Ben’s treating teams.  I had a dossier of Ben’s progress and setbacks, which proved useful in identifying some major concerns before they materialized. I am sure the doctors appreciated my diligence (..or maybe not 😊).  I learned to trust my mothers’ intuition and the right to be heard – but that in itself is another story.

It was the amazing support from the wonderful mothers at Ben’s school, “The Terrace Ladies Group,” who left meals for our family for months.  I don’t even know who they were.  Meals just turned up each day, and it gave me one less thing to worry about.  This act of giving has completely altered my mindset.  After experiencing others reaching out, I realise how important it is to let people know that you are there for them, if they ever need help.

What was also interesting, was the people that you would have expected you could rely on for support, but who seemed to disappear.  Or worse, the ones who stopped talking about Ben as ‘Ben’, but instead categorising him as a ‘them’ – a disabled person – a commodity.  Though hurtful at the time, in hindsight, I believe that it was probably their own inability to cope with the enormity of the circumstances, rather than thoughtlessness.

Times were tough but Ben’s resilience got us through.  I should have known that things would be okay when whilst still in ICU my fifteen-year-old son said, “I don’t care about my legs, but I hope I get my hands back.”  What?  Such incredible maturity.  How a young boy could adapt as he did, I don’t quite understand. How he could continue to be such a chilled out human being is still a quandary to me. I believe that having the security of having a loving family and an amazing network of friends who supported him no matter what the future held was important.

Those same boys, who are now extremely successful men, are still a big part of his life.  Perhaps most impressive are the achievements of Ben’s closest friend Dr Timothy O’Shea, who holds a PhD in Medical Engineering and Medical Physics, and has dedicated his career and his life to finding a cure to SCI, leading the research team at O’Shea Laboratory – Boston University.  It might also be fate that Ben’s teammate on the day of his accident, Dr Ben Beer, is now an Orthopaedic Surgeon specialising in Spinal Surgery.

As a mum, what is most special to me is the fact that these same men will be right by Ben’s side as he gets married in September.  Yes, yet another strong female has come into our lives.  Ben has met a wonderful girl who looked past the wheelchair to see my son for the handsome, personable, resilient man that he is.

So, twenty years after the worst day of my life, I am looking forward to what is going to be one of the best.

_________________________________

Ben Harvey is the founder of disability consultancy and SCI advocacy organisation Roll Models, and will be the keynote speaker at the Hearts in Rugby Union Bledisloe Cup Luncheon on 5 August 2023, hosted at Ballymore.  Touching on themes of resilience, and mate-ship, Ben will share more about his journey and the skills to succeed in times of adversity.

Tickets to the Hearts in Rugby Union Bledisloe Luncheon are available here: https://lnkd.in/gZcQ5MD6

If you already have plans that day, consider whether you’d like to support the Hearts in Rugby Union Raffle is for you instead: https://lnkd.in/gfruUkmT

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