An Ability to Make the Impossible, Possible

Have you ever wondered how far belief can take a person? We live in a society of labels. Of Men and Women, of Rich and Poor, of Black and White, of Gay and Straight, of Disabled and Abled. Although none of these labels define who we are as people, they frame the way that other people, and society as a whole, view and treat us. So what can we do? We can challenge these labels, and break free of the constraints that these social constructs place upon us.
 

Meet Martyn

Martyn Sibley is a 30 year old guy living independently in London. He has a beautiful fiance, has earned a Masters degree, drives a car and has travelled as far as Australia. He has SCUBA dived and runs his own business… He also happens to have Spinal Muscular Atrophy (SMA). Diagnosed since birth, Martyn cannot walk, shower by himself, or lift anything heavier than a book.

As someone who has never let a label restrict his dreams, Martyn, in his own words, has decided that his goal in life is to “inspire, inform and change the world around disability issues.” and is leading by example.


Childhood

SMA is a genetic condition, meaning that Martyn has had it since birth. He’s never walked or known any other way of life. Despite this there has still been a share of the hard times, times where in comparison to friends and society he’s realised he’s different and has had to come to terms with his disability.

As a young child it was hard knowing I wouldn’t play football for my beloved Tottenham. As a teenager it was hard to party, meet girls and imagine a great career.

Fortunately, Martyn got through these negative phases and found a way to see his disability as something to be overcome, rather than a restraint. He has developed into an adult who never sees a brick wall, only an obstacle, and loves his life and the people he shares it with.
 



Blood Ties

Family and friends are important to all of us, but for Martyn, the most facilitating thing his family have done is to look through his disability, and only see him.

Ever since I can remember my family, friends and colleagues never saw my disability. Of course they’ve had to help me, do things differently, and be aware. They’ve just done what was necessary and off we went.

Martyn’s mum in particular was a very strong, positive and encouraging influence in his life.
 

She found my flying the nest difficult because of our bond, but she’s a big reason why I’m so out there and happy now.

Making the Impossible, Possible

Because of his upbringing and support from family, Martyn has always lived with an attitude of making things possible; Where others would look upon his condition and shake their heads, Martyn nods and always finds a way. It was his decision to start blogging however, that truly refined this stance on life.

I was at a Fundraising conference for my work with the disability charity Scope, and I attended a social media workshop. A guy called AJ Leon spoke about telling your story, building a community and making a call to action. He also spoke of living a life of purpose.

This struck a chord with Martyn, and he really took Leon’s advice to heart. Ever since, he has written, posted pictures and recorded videos on his website, www.martynsibley.com. By not only continuing to do the things in life Martyn loves and cares about, but by also blogging about his journey and experiences, he has realised that he has found his life’s purpose; Changing the world through inspiring others to make their dreams possible too.
 



The Beginning Of Many Adventures

Living with SMA has made every major life event more complicated for Martyn. Going to University meant he had to grow accustomed to strangers doing his personal care and travelling to Australia meant funding PAs, getting on an aeroplane with a wheelchair and exploring new terrains. The complications Martyn faced on these adventures didn’t stop him. Instead, the more challenges he overcame, the more he believed was possible and the more he realised that so much could be done to improve the accessibility of everyday tasks for those in need.

Flying a plane over Stone Henge and SCUBA diving in Tenerife was awesome. However some days getting out of bed, accessing a local cafe and seeing a gig is made difficult by our still inaccessible world. Luckily I love a challenge and get a buzz from showing the world what is possible. We need to ensure the basics aren’t so tough and include everyone in everything.

From John O’Groats to Lands End

Following the blogs, the projects and travels a few things came together. Martyn, and his fiance Kasia, supported a Polish project where a lady went 2500km by wheelchair. At the time he was also an ambassador for Britain’s Personal Best and so Martyn decided that putting together their own version of the project made sense.
 

 

Following a couple of frantic months of logistics, PR and sponsorship planning; Martyn and Kasia headed to John O’Groats on September 4th 2013.

You can see the videos and pictures on my blog, but needless to say it was amazing! With Kasia on her bike, me in my wheelchair, the sites of Scotland and dramas of breakdowns in Bristol – we had it all. The media coverage and funds for our charities was fantastic too.

It was the day after Martyn returned from Lands End that I met him at the Britain’s Personal Best reception. The chair still covered in mud and Martyn and Kasia clearly exhausted, you couldn’t ignore the excitement on their faces of having conquered yet another challenge.


The Road Still to Come

In the coming months Martyn’s doing an accessibility review at Center Parcs, a Social Sector exchange in Tokyo, 3 months in the Catalan and a month in Poland. “That should keep me busy.” he added, before I asked him to tell me where he can see the future taking him more long term.

In general I’d love to be a dad, travel South America, write the novel I’m planning and basically have fun!

Overall, I’m living my life by my principles, educating society, inspiring disabled people and leaving a dent in the universe. I just want people to live their life by their own principles, and leave their own dent!

Meeting Martyn has been incredible. His passion and determination to live life to the max and to help facilitate others in their goals, whatever they may be, has been an inspiration. It has also been a reminder that whilst anything is possible, we all need to pull together as a community, and society, to help others achieve their dreams.

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Zero Waste Heroes

There are 5.8 million people in the UK living in poverty right now. Yet each day, over 14 million meals are thrown out by the food industry – enough to eradicate hunger in the UK entirely.

Several weeks ago at Britain’s Personal Best I met Lotti, a women who, along with a wonderful team at PlanZheroes, is on a mission to do exactly that. This is her story.




Lotti’s Story:

As children, Lotti and her sisters’ home life was very comfortable. Her parents were Austrian Aristocrats and they lived on a large estate in Slovenia, until World War II shook the continent, changing their lives forever.

“Duty and serving your neighbour were of great importance to my parents. When I was 17 years old, I was sent to become a nurse in the Second World War. I nursed for three years in the German army.”

After the end of the war in 1949, her family’s estates were taken by the communists and Lotti and her sisters found themselves penniless in Italy, without a home and without their Mother who had died in 1945.

Never having had to enter a kitchen before, let alone prepare a meal, the girls didn’t know how to cook and had no money to buy food.

“It was awful to see my younger sisters so hungry. At that time my Father sent them to school with an empty military-style lunch container. After the school lunch they would empty all the left overs from the other school children’s plates to reheat and eat at night. We all chewed sunflower seeds. My sisters often cried.”

Lotti managed to get a job at the British military hospital in Trieste. She would take porridge oats home and a large hard ball of Horlicks which they made last for as long as they could. With her newfound appreciation of hunger, Lotti began to organise distribution of leftovers from the ward to the hungry who queued at the back entrance to the hospital, it made no sense to her that it should go to waste when people were in need.

In 1947 Lotti married an Englishman and moved to London. Although leaving the post-war hardships behind, to this day she retains her fear of hunger.

“I am never without food when I go out, even if I am just going to the post office.”

img credit: Chris Devers


Greatly affected by the amount of food waste in the modern world, Lotti can’t understand how so many people still go hungry.

It was with London Citizens that she found fellow enthusiasts with whom she could establish PlanZheroes in 2010. In 2011 the project was recognised by the Greater London Auhority and Lotti was voted a London Leader.

The Problem:

In the UK each year, the retail sector alone produces an estimated 1.6 million tonnes of food waste. Add to this an estimated 600,000 tonnes of food-waste from the hospitality sector, about two-thirds of which could have been eaten with better management, and you get 2.2 million tonnes of food being thrown out per year, the equivalent weight of 14 million meals per day!

PlanZheroes estimate one third of this waste is surplus food; food still in consumable condition but isn’t or cannot be sold. Why then, is it not given away?

“My research showed that food businesses were only too willing to donate but did not know how.”

The Solution:

PlanZheroes’’ action plan and underlying idea is rooted in a simple principle: Community.

What PlanZheroes have facilitated is a platform where food outlets and small charities and community groups can connect via an interactive map, together reducing surplus waste, and helping those in need.

“We believe there is always somewhere a food business can donate their surplus food so it can be distributed to those nearby who need it.”

As of today, 150 donors, including caterers, bakers and hotels, are solidly linked to a similar numbers of recipients, ranging from church charities, school breakfast clubs and soup kitchens, sharing food, which would otherwise be headed straight for the bin.

All PlanZheroes members are volunteers, helping to spread stories of success and possibilities to inspire more businesses and charities to connect with one another. At present the team are working on producing a new map and mobile app, making it easier to find where and when food becomes available. They’re also working on a way to quantify the food offered to monitor and measure impact on waste prevention and social change, health and wellbeing.

Image Courtesy of Greg Funell


Lotti’s Personal Best:

The journey’s well on the way and Lotti is determined to reach her Personal Best Goal; To engage 90 volunteers and to help inspire and build 900 connections between businesses and charities before her 90th birthday next year. I have complete faith in Lotti’s pledge, and I hope this post will raise some awareness to inspire more zero waste heroes.

There is 2.2 million tonnes of food going to waste each year… but it doesn’t have to stay that way.

Interested in learning more about PlanZheroes, signing up or volunteering? Click here.

Hundreds of Skinheads

This morning my creative writing class ventured into the depths of unknown territory… the Patcher’s Lodge Retirement home. The idea was that over lovely cups of tea and bikkies we would be joined by some of the residents and hear their stories, which we would then use as inspiration for some creative pieces we could later perform for them.

However, upon arriving at the lodge, it would seem that almost none of the residents been told to come and join us, so our lecturer obtained permission for us to go and knock on a couple of doors, and see if anyone was interested.

Leaving my voice recorder and belongings in the lounge, thinking I’d be returning in no time I took the elevator to the first floor and, feeling a little uneasy, I knocked on door number 5… no answer… I started to head back to the lifts but figured I should give number 6 a go while I was there.

I knocked.

Coming.

I waited.

Coming.

Louder still

COME IN!

Oh, he’d said “come in”… I wasn’t sure whether I should enter or not but he knew someone was there, it would have been rude to walk away.

Opening the door and stepping into the flat my first impression was… Beige…

The door into the living area was open and I could see an elderly man, whom I soon learnt was named Rob, propped in a recliner couch facing the telly. I headed in and noticed he wore a yellow t-shirt on which a few crumbs had fallen from his breakfast toast. He was almost bald with a few whisps of hair sprouting from his head and had huge, black-rimmed square glasses propped on his nose.

“Sorry, I didn’t mean to be rude and shout at you, but I can’t get to the door”

My gaze travelled to his legs, mostly hidden under a red checkered blanket, but I could tell they were small and withered, and at any rate hadn’t been used in a long time.

He wouldn’t be coming back down to the lounge with me then. But I was there, and had interrupted him, I thought I may as well find out if he had any stories he wanted to tell me.

“That’s okay, I’m a creative writing student from the University of Brighton, we’re here this morning to speak with some of you, hear any stories you’d like to share with us and then use it as a starting point for some work. I wondered if you’d be interesting in having a chat with me?”

“Oh yes, I don’t mind you staying for a moment at all!” The man’s face had brightened and he gestured to an empty arm-chair.

I took a seat.

Without needing much prompting, he launched into his story.

“One of the most memorable stories I have is that I was once in a Musical” he started.

“I used to be in musicals as well!” I responded quickly, glad for this initial common ground. He chuckled to himself and continued to talk.

Living in East London and donning boots with his jeans rolled up and a clean shaven head, Rob passed as your typical skinhead of the 60’s, however, Rob had always had an affiliation with the Salvation Army. Members of the Church had devised a musical to raise money, and Rob was happy to be involved.

The story was about members of the church and a group of up-to-no-good skinheads who they managed to get on to the straight and narrow, the leader of this group being an ugly blighter named Freddie the Dip. When the roles were being selected each person in turn shook their heads at the mention of Freddie and said, “No, I don’t think that one’s for me”, until Rob’s mate piped up:

“Rob here’ll do Freddie, it’s a perfect fit, and with the mug that Rob’s got, he won’t need no make-up or nothing!”

Rob was laughing at the memory and I couldn’t help but laugh too. Here was an old man, bed bound, who had a fantastic sense of humour, especially if he was at the brunt end of the joke. In fact, later in the conversation he said it himself,

“When you’re home bound and immobile, or crippled by an illness, laughing doesn’t take it away, but it makes it easier.”

I could see the joy that Rob was getting from telling me these stories, and I was under the impression there were a few more where that one came from, so I decided to stay a little longer and see what else he had to say.

I learnt that he had travelled to the Middle East, Norway and all over the continent in his life, I learnt funny anecdotes about groups of skinheads he was involved with when he was younger, together we laughed over the clothes he used to wear, the mischief they got up to, and how he and his mates compare with young boys today. I learnt that in 1977 he’d left East London and moved to Hove with Kathleen, his late wife, who died after only 7 years of their marriage and I learnt that without Kathleen, and with no other family, Rob had focused his energy on his friends, the Salvation Army and helping others. He’d even worked as a carer for the elderly and those with Dementia, before he starting needing help himself.

He told me many stories of his involvement with the Salvation Army, emphasising how accepting they are as a Chuch, and how they reached out to others in ways beyond liturgy and preaching, not being a fan of that “nonsense” but rather of connecting with others, and helping those in need.

“It’s not about the religion” he told me. “It’s the people that matter.”

In Brighton Rob had become a member of the Salvation Army Congress, for which one of his mates, Paul, would take the mickey out of him.

“Why’d you go along to those things?” Paul would ask him.
“Why don’t you come along one day and find out?” Rob’d reply.

Paul did exactly that. Expecting some of the Church members to be a bit funny about Paul’s appearance, Rob was surprised at the amount of fuss over his friend. Paul was fussed over so much, that even if Rob wasn’t headed to the Church one day, Paul started to go without him.

“Do you know the song Hundreds and Thousands?” Rob asked me. I shook my head. “It’s a children’s song from the Church, but it’s a lovely little tune.”

He explained that the songs verses talked about all the thousands of flowers and birds and children in the world, ending with the phrase “God loves them as much as he loves me”.  A twinkle in his eye I could tell that this sweet story was headed somewhere interesting, so I help my tongue and let him continue.

Rob had created his own verse to this song in a pub once, when challenged by a mate to explain how the song was relevant to him and the others sitting around.

“Alright then, come up here and I’ll show you how it’s relevant to you” Rob replied, before breaking into a newly created verse which has since been sung by skinheads in roughened East London pubs, and in the Church alike, it was probably my favourite of the stories Rob told me today, the verse goes something like this.

“There are hundreds of skinheads, thousands, millions,
and yet their names are written God’s memory,
there are hundreds and thousands and millions of skinheads,
but God loves them as much as he loves me”.

On finishing the verse, Rob started to tear up. Apologising profusely, he wiped his eye. I stood up from the chair, grabbed his hand and asked if he was okay, letting him know that I would have to be on my way in a minute, but asked if there was anything I could do for him first. He apologised again and asked if I could make him a cup of tea before I left.

While the kettle boiled I heard him call to me from his chair.

Can you come again?” he asked me. “Your friends would be welcome too, girls or fellas I don’t mind, but please come again.

My heart ached. What saddened me the most was that this old man was all alone, he had been house-bound for 2 years, and had no one left. No family, no friends.

He had such wonderful stories, and had done some wonderful things in his life. He had donned the steel capped boots and roughed it out in East London in the 60s, he’d travelled to the middle east 3 times, been to Norway and all over the continent, had performed as Freddie the Dip in East London, married a beautiful woman and moved to Brighton, he had worked as a carer for the elderly and those suffering from Dementia, done amazing work with the Salvation Army and was now sitting in his flat, unable to move, reminiscing and laughing with a girl he had just met about the good old days. He didn’t feel sorry for himself, he just wanted some company, and a bit of a laugh.

“I’ll come again.” I promised, and I will. As an old man told me today, it’s people that matter.

 

Images attributed to: Vinoth Chandar and Paul Townsend
 

The key to Humanity, It’s all in the heart

I just finished reading a novel written by Immaculee Ilibagza, a Rwandan woman who had hidden, had been hunted, and survived the Rwandan genocide of the 1990’s.



Despite the absolute atrocities, of which this book leaves out very few details, the book is not a devastating one. It is not a horrible story. It is a story about love, about hope, about faith, and at its absolute core, about forgiveness.

 

Immaculee herself had seen and heard terrible things during the months she was kept in hiding. Squished into a tiny, hidden bathroom of a Pastor’s house with almost 10 other women they lived on tiny morsels of food scraps and remained seated on the cold, hard floor, without space to move, for weeks on end. She heard stories of her parents’ merciless slaughter and of the torment and shame her brother was put to before he was also killed. She went through absolute hell, seeing the mountains of bodies and being hunted herself; not by strangers, but by neighbours and old friends, all because of a history of racial tension between 2 tribes of Rwanda. It didn’t take much propaganda to convince the Hutu majority that Tutsis were to be killed. That no man, woman or child Tutsi was to be left alive and any Hutu who refused to accept the Government delivered guns and machetes were to be labelled as “moderate” and killed as well. Media propaganda and lies were all it took to turn a previously peaceful nation into a war zone, and friends and neighbours into blood-thirsty killers.

In the time Immaculee, a Tutsi, spent in hiding, and then in the French refugee camps set up in Rwanda, she handed herself over to God; to prayer, and realised that she could not live with the surging hatred and a will for blood and vengeance in her heart. Whether she lived through the war or not, she learnt she could not survive unless she learnt to forgive.

Reading Immaculee’s story made me think very deeply about human nature. Never having considered myself religious, I still completely understood this book. It holds such a core theme surrounding God and Catholicism yet I never once felt sceptical, or distanced from Immaculee’s belief. Wherever Imaculee talks about God and about prayer, I found it natural to substitute her belief of God for my belief in humanity, of positivity and the power we all have to achieve our dreams and goals. She says in the novel:

“I was living proof of the power of prayer and positive thinking, which really are almost the same thing. God is the source of all positive energy, and prayer is the best way to tap into His power.”

Now while I don’t necessarily believe in God, I do believe in the power of positive thinking; not in the visualise a parking space and there you shall find it kind of way a lot of self help books preach us which many take the mickey out of, but in the aspirational sense; In the positive nature of love and hope; In the power of dreaming, and the fact that anyone can achieve great things, if they have the dream and the belief they can achieve it. So, whenever Imaculee was talking about God, and about prayer, my mind naturally converted her belief in God to my belief in humanity, and in the power we all have to achieve our dreams and goals. Like Imaculee says in the quote above, at the heart of it I honestly believe they are essentially the same message and belief, simply wrapped up in different packaging.

Immaculee achieved great things. Not only did she survive against impossible odds, but she saved those with her as well. She taught herself English whilst trapped in that bathroom, she got her dream job at the United Nations in Rwanda following the war, she returned to her village to mourn for her lost parents and brothers, burying them and grieving with her remaining relatives and friends, she met the man of her dreams, and she eventually escaped Rwanda to America, where she became a mother to two beautiful children. Imaculee thanks God for providing her with her strength and faith, and for setting her on the right path, but she also believes it was her responsibility to walk that path. Religious or not, we all have hopes and dreams, and we all have the ability to achieve them. Horrible things happen, and we have to acknowledge our situations. We all long to love and feel happiness, often we will (and should) feel sadness, and occasionally we will feel anger, but we always have the choice to melt the anger away. It’s not easy, but this is the one thing Imaculee achieved which surpasses all others, and which I honestly believe is what would rid the world of the troubles it faces everyday.Forgiveness.

Anger and vengeance is a never ending cycle. It traps those caught in it and never lets them go. It consumes them, and infiltrates their minds and their hearts. The only way to end the cycle, is to forgive. To forgive others for what they have done, and to hope that they realise their wrongs and find a better path. I don’t believe this means befriending everyone who has wronged you again, far from it; but you can forgive them. Rid yourself of your bitterness towards them and you can truly let them go, and let yourself free in the process. Think of Jesus, think of Ghandi, think of Mother Theresa. These leaders and many others which go down in the history of different faiths and cultures, all believed in stopping the cycle of hatred, with forgiveness and with love.

I believe in the power of humanity. I believe at heart we are all good. Sometimes people just lose their track and need someone to show them the right path. For one person that role could belong to their God, to another, it could be a stranger, or a friend who points them in the right direction, and for others, it could be nature, a book, or simply the mysterious workings of the universe. Whatever you believe, believe in hope, believe in the good in others and learn to forgive.

Imaculee’s closing words touched me more than any others in the book, so I decided I will close with them as well…

The love of a single heart can make a world of difference. I believe we can heal our world by healing one heart at a time.
I hope my story helped.


Image courtesy of Antonis Kyrou

The Big C

Imagine the Unimaginable:

For many of us the thought of knowing your lungs were filling with cancerous growths is simply unbearable. It’s unimaginable to think that one morning you could wake up, run your hands along your neck, your breast or your spine and feel your heart sink as you found another lump. For Matt Storey, and 1 in 2 other Australians, these feelings are all too common.

I met Matt about 4 years ago now, and have followed his journey the whole time. I wanted to write about Matt not because of what he’s gone through, or what he most probably still has in store, but because of his attitude to life, and his uncanny ability to make sure people are smiling and laughing, no matter how serious his situation, and often at his own expense. It’s this selfless kindness, and Matt’s unique perspective on life and friendship which makes him, in my eyes, extraordinary. I hope I can share a little bit of Storey’s magic with you, and I hope you will join his cause.


Meet Matt:

Matt was born and still lives in Newcastle, New South Wales. A self confessed sporting nut, Matt’s a dedicated Newcastle Knights supporter, cricket fan, and has always had a special passion and talent for swimming amongst all his other sports. As his teenage years came to an end no one could have thought that his incredible fitness was hiding an internal killer.

Matt meeting Aussie Cricket legend, Michael Hussey

Initial Diagnosis:

In May 2008 Matt started having night sweats. Initially thinking nothing of it Matt realised there was a problem when he had to lay towels down to sleep. After a series of tests, and at 18 years of age, Matt was diagnosed with Hodgkins Lymphoma. His body was literally littered with tumours.

This marked the beginning of what has become a 5 year journey; a journey through the years his mates would spend studying, working and partying, a journey in which Matt would be fighting a silent killer, and unimaginable odds.

Matt started a course of chemotherapy in August of that year which lasted until January 2009.

After his first shave… smiling from the get go

Despite a strong response to the treatment, and months spent catching up on student life, working and generally improving his fitness, a scan in June showed Matt had relapsed. News which would be devastating to anyone, Matt took the blow, but stood right back up, and kept on running.

It was a bigger shock when that scan came back positive than my initial diagnosis after responding so well to the Chemo… It was devastating news to hear but I woke up the next day fine and I was genuinely thinking “Right, Let’s do it!” There was no point in having a whinge, that wasn’t going to change anything-we just had to get on with it.

Getting On With It:

Said so casually, in reality “Getting on with it” meant more chemo, followed by a stem-cell treatment using his own, harvested stem cells. Another relapse was to follow the first lot of chemo but after more chemo Matt finally had the stem-cell transplant in February 2010. His body took a fair hit from the transplant, taking longer to recover than from therapy. Stubborn as he is, Matt continued to push through, going back to work and preparing to re-enter University when a post treatment scan in May finally tackled Matt to the ground.

A third relapse meant that Matt, now 21 years of age, was down to his last shot for a cure. This shot was presented in a treatment plan including another stem cell transplant, but this time the cells would be from someone else. A bone marrow transplant from a donor Matt had never met.

In order to find a donor, my blood had to be tissue typed. I was lucky enough to have two complete matches. One was a 39 year old mother of five from Australia, the other a young man living in Germany.

The German man was chosen as Matt’s donor and the transplant went smoothly, as did Matt’s recovery. 3 months later, Matt had another post treatment scan. This time, though, the scans were clear.

I don’t think I’d ever been more nervous in my life before getting the results of my 3 month post-transplant scan in February 2011. That said, I felt different about this one. When it came back clear, I don’t think I’d ever been happier in my life.

The doctors gave Matt the all clear to get back into the pool, regain his fitness and head back to his job as a swimming coach, which he more than readily did. Getting fit again was tough. Matt only made 500m on his first run, but kept at it, and within a month was running 4km in under 22 minutes. It was at this point Matt got in the pool. 500m on his first swim hurt like hell, but within 6 months Matt was working 30 hours a week and swimming 30 km a week. This kind of recovery was unprecedented; the doctors had never seen anything like it.

Fall Number 4:

He kept up this routine until his one year scan in November 2011.

I remember sitting there nervous again. Being perfectly honest, I had a bad feeling about this one. I don’t know why, I just did.

Matt’s instincts were right. He was facing his fourth relapse. This time the news was gutting, and this time he almost couldn’t pick himself up to keep running…

It was the kids Matt coached who kept his spirits from falling.

Matt with his team of swimming troopers

“They’re the best bunch of kids to coach and train with. The day after I got the result I was taking them as coach to district championships. It was my first carnival as coach and I was really excited about it. I had to play a bit of a poker face that weekend but having the kids around that weekend was great. And they definitely got me through November and December.”

In December Matt was given what’s called a Donor Lymphocyte Infusion (DLI), where extra cells which were harvested from the bone marrow donor are used to try and evoke a bodily response to fight the relapse. When even more spots started showing in scans, Matt underwent another DLI in February 2012. It was a week or two after this DLI when Matt developed a cough. The cough got worse, as did Matt’s condition. A scan showed a mass in Matt’s lungs. All tests came back inconclusive. April 2012 and still no diagnosis.

I was given 3 bronchoscopies, all a few weeks apart, and all results came back as inconclusive. I knew this would be the case. I was getting sicker and sicker, and we weren’t getting a diagnosis.

They had no choice but to do an open lung biopsy. Against all hope, the biopsy remained inconclusive. They didn’t believe it was Hodgkins, but that it was more likely a spindle cell tumour. If it was this tumour, and if it had spread, Matt was facing a death sentence.

As scans were sent around Australia, Matt’s condition was worsening. He had to stop work after collapsing one day, and to get anywhere needed a wheelchair. Matt had been sick from treatment before, but nothing like this.

“Check out my new wheels”

Talking to my nurse, at this point on a scale from 0-5, where 0 is nothing wrong with you and 5 is deceased, I was at a 3. Nurses were talking to me about end of life scenarios i.e where do I want to die etc. I knew this conversation was coming. I was getting worse and worse, and with nothing coming through from other pathologists, I knew death was a very real possibility.

But Matt wasn’t done with life yet. He started having night sweats, and found lumps in his neck. Recurrent Hodgkin’s was brought back as a possibility. A call in September from 2 pathologists confirmed recurrent Hodgkins. Matt found out that his lungs were practically full of lymphoma, and had he not been as healthy as he was the sheer amount of them would have killed him. Again Matt’s fitness had saved his life.

The Price For Time:

Despite this diagnosis meant Matt was essentially incurable, it meant that he was treatable, and a new drug called Brentuximab was recommended by his doctors due to its limited side effects and clinical trial results. No longer part of a clinical trial or on the PBS, Matt is the first person in Australia to have to pay for this drug. At over $13, 000 a dose, and an expected 16 doses, that reaches a total in excess of $200,000: Matt’s price for time.

A week after his first dose Matt was out of the wheelchair, and two weeks later he was back in the game, doing most things without an issue, and the lumps in his neck were almost gone. The Doctors and nurses were stunned, and Matt was stoked.

He started improving drastically and in November 2012, after his third dose of Brentuximab, a scan confirmed what Matt was feeling. He had shown an amazing response to the treatment, with over 50% reduction of the tumour in his lungs and lymph nodes. This reaction meant that if continued, Matt would have a chance of another transplant, another chance for a cure, another chance at life.

Matt with his parents, and sister Ashley

Another Chance:

Despite the cost of the drug, you best believe Matt is giving this chance his all! After 5 relapses, open lung biopsies, Chemotherapy, Bone Marrow transplants, and a lot of time and pain, Matt still refuses to give up, and that’s what I love about him.

His discipline, and mental strength is something else which I truly admire, and Matt explained that a lot of this he learnt through swimming.

Some of the sets we used to do were physically brutal and you had to stay strong mentally to get through them. The easy option in some of those sets was to throw in the towel, but watching the older guys when I was younger push through them made me want to do the same, and since then I’ve never thrown in the towel.

I asked Matt how he gets through each day, how he can continue to joke about getting nurse’s numbers and his “sexy scars” and he tells me he owes a lot of it to his friends and family, but especially his Mum.

“There’s no doubt the person that has helped me the most is Mum. Me and her are alike in a lot of ways, and she’s been as solid as a rock through the whole thing, which I definitely think I’ve fed off. She’s the one person I’ve always felt safe talking to about my thoughts, views and feelings on the whole situation.”

Perhaps not so ironically, Matt’s chance has finally come. Now in complete remission Matt is scheduled for another bone marrow transplant to take place next month. The donor, his Mum. If the transplant fails, Matt will return to Brentuximab, but if, finally, Matt gets the cure he deserves, any remaining funds from the Matthew Storey Foundation will be donated to a similar cause or charity.

After reflecting on Matt’s story I am reminded of the old Japanese legend of Daruma, closely associated with the Japanese proverb, ‘Nanakorobi yaoki, jinsei wa kore kara da’, loosely meaning:

“Fall down seven times, get up eight, life starts from now”.

Named after an ancient Chinese Zen Master, Bodidharma, the Daruma Doll is a symbol of self-discipline and positive outlook. Weighted at the bottom and rounded in shape, the doll will always roll back up when it’s knocked over. This, in a nutshell, is Matt.

Never, Ever Give Up:

Matt like all of us has many dreams, goals and aspirations. He wants to help the kids that he coaches reach their full potential and grow up into the fine young adults that he knows they’re going to be. He wants to see the world and see the Newcastle Knights win another Premiership. Most of all, he wants to go to the World Transplant Games, win 5 gold medals and break 5 world records!

Matt’s story teaches us something special about the world we live in, something that is blatantly obvious, and yet we seem to forget so frequently. Life is fleeting and in the end, each of us will die; we can make of it what we will. We can choose to pursue our dreams, or not. We can choose to help others pursue theirs, or not. It’s really that simple. I asked Matt for a piece of advice he could share with the world. Here it is, in his own words:

“Don’t plan too far ahead, enjoy each day, and, most importantly, never give up.”

Matt, like Daruma, teaches us to NEVER, EVER GIVE UP on our goals and dreams, even if you’ve been told you’re dying.

The Choice Is Yours:

Today is a new day to get back up, and certainly an opportunity to hoist someone else up with you. For the past 4 years I have followed Matt’s progress and have joined his cause. I’d now like to extend an offer for you to do the same; the choice is yours.

Visit the Matthew Storey Foundation website and donate here

His chin up, still smiling, and not losing hope


A big thankyou to Matt for letting me share his story, and another big thankyou to my girlfriend Dani Brown for giving me a kickstart with the post and helping me write it.