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Fate & Courage : Manish’s Story

July 23, 2014 , by Casey Ann Seaniger, 2 Comments
Fate & Courage : Manish’s Story » My Dreams Mag

 
At the tender age of 25, Manish Subedi has been through hell and back.

A chain of extraordinary events began to unravel in 2008, changing the course of this young Nepali’s life in an unimaginable way. Manish’s story begins with a journey abroad, a life-changing diagnosis and a battle like no other. Traversing from loss to hope in a fraction of time, Manish’s fate would ultimately rest upon a gift of a brother.

Six years on, Manish is now reflecting upon his journey and the shining light that must have flickered ever so mellifluously in his shadow from the moment this ordeal began.

His story is one of courage and fate.

 

image_7A Life-Changing Diagnosis

In 2008, Manish had the world at his feet. He’d just moved from Kathmandu to Sydney after being granted an Australian student visa. It wasn’t long before he was beginning to settle in to foreign life while sharing a house with friends. By 2009 he’d found work, fell in love with a Nepali girl, Meeli, and married her with their parent’s blessings in a simple ceremony in Australia in March 2010.

Shortly after, Manish moved from Sydney to another city 4000km away, Darwin, to pursue a Bachelor of IT while his wife stayed in Sydney for work. A month later, he felt fatigued and was bleeding from his gums. He also noticed darkened, red rashes over his hands and shoulders.

One morning, Manish was meant to go to university at 8am but didn’t wake up until 1pm. That afternoon the GP ran some tests while Manish went back to work. He was stung by a call telling him to go to the emergency ward immediately.

At that time I was still thinking nothing that bad could happen to me,” Manish says. “I was young and healthy, I was only 23 years old.”

After spending a week in hospital, Manish received life-changing news. “You have Acute Lymphoblastic Leukaemia (ALL),” the doctor Aakash told him. “The cancer is an aggressive one.”

The words struck him like a lightning bolt. “Cancer” was all he heard.

Being that young, the dreams which I thought I had back home about coming here and pursuing my dreams,” he says with a strain on his face…“they were all gone.”

 

The Battle Of All Battles

A long way from his terraced home in Chabahil in the Kathmandu Valley, the four walls of a hospital room was now his new home. Manish felt ostracised from this foreign land and culture more than ever before, made worse by the daily reminders of nurses bringing him plainly boiled hospital food.

The absence of his family was growing more palpable and he missed Nepal deeply. His refusal to accept cancer had kept him from telling Meeli of his diagnosis. He finally mustered up the courage and his wife soon arrived in Darwin.

When I first started chemo I was strong, I thought I could face it,’’ he recounts of those early days. The vulnerability in his eyes is raw. “Other times I was hopeless and thought I would give up.”

Manish underwent two rounds of chemotherapy and during the second round ended up in ICU. He pulled through but he wasn’t responding well to the treatment. Doctors said his best chance of survival was to undergo a bone marrow transplant back in Sydney. Night after sleepless night, his bones ached for his mother country.

 

imageThe Legal Nightmare

Aside from the physical and mental battle of dealing with cancer, Manish was stuck in a David and Goliath battle with an insurance company after they refused to cover him when he moved from Darwin to Sydney.

Desperate for treatment, his Australian friend, Angus, suggested he try changing hospitals. He approached the Royal North Shore Hospital and staff promised to get him the treatment he needed. Through the help of a lawyer, provided free by the Cancer Council charity, the insurer finally agreed to pay his hospital and chemotherapy costs.

I was crying, I broke down,” Manish blurts out.

Manish and Meeli celebrated with their favourite dessert: Laalmohan.

Around the same time, the Nepali community in Australia had begun rallying in support of Manish, raising funds for his treatment and to bring his family to Australia. Together, Meeli and Manish’s strength rose and hope endured once again.

 

Saṅgharṣa Garna

After three rounds of brutal chemotherapy, the toll on Manish’s body was beginning to take force. His lungs were deteriorating as an infection in his blood spread to his chest, and he’d lost nearly 85 per cent of vision in his right eye.

Rapidly losing weight, he started hallucinating as a result of bleeding inside the brain. “Sometimes I would see God Shiva, on the hospital walls and he would be doing Namaste to me,” Manish says.

One day, the hallucinations disappeared and he saw his mother’s face in front of him for the first time in nearly six years. “That feeling of seeing my mum’s face gave me hope.”

Within two days an infection had spread through his body and Manish was back in ICU; but this wasn’t like his other trips to ICU, this time his kidneys had collapsed. He was given a 10 to 15 percent chance of survival and doctors prepared his family for the chance that he might die within 24 hours.

They told Manish’s mum the news through a Nepali translator.

You know how a mother must feel when their child is in front of them dying?” Manish cries out, as he motions forward toward me, his voice whimpering.

image_6I freeze – I don’t want to answer his question – I can’t, no answer will suffice. Silence is the only answer. The quietness between us lingers as I imagine a mother wailing over a dead son on the ghats of Pashupatinath on the Bagmati River.

Staring blankly into the air, Manish remembers being later told what his mother said to the doctors. In an imposing tone, Manish’s mother looked the doctors in the eyes and said: “My son will survive, I really have faith in God.”

Day after day she waited by his bedside, watching the rise and fall of his every breath, hoping her prayers would be answered. The sensational doctors and nurses worked tirelessly on Manish, never giving up their shared will for him to survive.

Over time, with the best treatment available and Manish’s fighting attitude, his white blood count improved and he started gaining sensation in his body.

My fingers were moving, I was getting more of that consciousness…which was life.”

Slowly recovering, Manish left ICU and returned home. He got to enjoy his favourite foods of dhal bhaat, khasi ko masu and kukhura, and on some days he mustered up enough energy to leave the house with his family.

This trademark stoicism was also evident at a cancer fundraiser in 2013. A day after coming out of ICU, and barely able to wheel his own wheelchair, Manish was determined to attend.

Out in the fresh sun, life’s simple pleasures felt like luxuries again as he felt the warm sun bite his cheeks and the soft, green grass entangle through his legs. “I was breathing fresh air and stretching my body,” he says, remembering that day with ease. “It just felt so good to be alive.”

At home that evening, he vomited all night.

His social worker reminded him how, on that day, he’d brought hope to others fighting cancer. But as Manish knows, it’s not just about having hope. The daily side effects of constant vomiting, seeing his hair fall out and growing frailer by the day slowly eroded away at him, as did his self-confidence.

Chemotherapy kills everything, even your willpower,” Manish says. “Sometimes I looked at the mirror and wondered if that was the same person looking back at me.”

 

A Mixed Match

Manish’s ultimate aim was always to undergo a bone marrow transplant. Doctors in Australia had begun finding Manish a bone marrow donor but over time the prospects grew weaker and weaker.

They looked at Caucasians, but there was no match, they looked at the bone marrow registry in Australia, there was no match,” Manish explains.

They looked up in Europe, but there were no matches.”

In a last ditch attempt, they asked Manish if he had any siblings and both of his brothers were tested.

image_1In a remarkable twist of fate, Manish’s brother, a medical student, was working at a haematology ward in the United States seeing other leukaemia patients get bone marrow transplants.

He was tested but the news wasn’t what they hoped for. The match was known as a mixed match; a match of only 50 percent.

A mixed match is a complicated and rare transplant, they only do a few of these transplants,” Manish explains.

If it was 40 percent match they wouldn’t have done it. But brother was 50 percent and 50 percent is the minimum.

He (brother) was happy to come for the transplant. He knew what a new life meant to me.

His brother booked his flight ticket to Australia along with Manish’s father who’d been too afraid to see his son until now. On the day of the bone marrow transplant, Manish was in high spirits to receive his brother’s priceless gift.

I was hoping I’d be wiser like my brother too,’’ he said laughing.

In true Manish fashion, the transplant wasn’t straightforward as Manish battled a fever and complications, but finally, the transplant was deemed to be a success.

 

A Time For Reflection

According to the Cancer Council in Australia, in 2010, 319 people in Australia were diagnosed with ALL and in 2011 nearly a third (97 people) had died.

It’s this reminder that makes him count his lucky stars.

When asked if he thinks he would be alive if diagnosed with cancer in Nepal, Manish is blunt.

I don’t think I’d be alive if I was in Nepal,” he says.

Awareness about cancer is low in Nepal, Manish explains, especially among younger people and manish believes Nepal lacks the same high quality chemo services which he received in Australia

But at the Civil service hospital Department of Clinical Haematology in Kathmandu, Chief Dr Bishesh Poudyal, says with the hospital seeing six to eight new cases of acute leukaemia per month, cancer services in Nepal were improving.

 

The Road To Recovery

The physical reminders of Manish’s cancer remain as he battles with only 15 percent sight in his right eye, as do the mental scars.

A lot of my friends have died,” he says with a desperate strain on his face, seemingly like only what a sufferer has felt. “It’s really hard to see people dying around you. One day, they’re here and the next day, they’re gone. Many of them were older but somehow they had fulfilled their dreams. For me, I was young, I still had dreams.”

Those dreams are now at the heart of everything he does because he knows what a precious privilege it is to be granted a second life.

I am an example that miracles do happen,’’ he says smiling as his cheeks widen.

Two years after his transplant, Manish’s brother’s chromosomes began counting100 percent.

Now in remission, Manish has begun educating the Nepalese community in Australia about preventative health and in the future plans to share his story with cancer victims in Nepal. “I tell them if you’re feeling unwell, go to a doctor and get a check up, don’t risk it.”

Manish is currently working in aged care and would like to be a nurse.

I feel I’ve got my soul back after helping and feeding the older people.”

He also plans to go back to Nepal and marry Meeli under traditional customs and rituals.

He is grateful for the support of the Nepali community, his doctors and nurses, the Cancer Council, the Leukaemia Foundation (which provided him and his family free accommodation for 18 months), and of course from his family and friends.

image_3

Manish’s story has shone a light into the hearts of others around him and while the memories of his cancer journey remain forever etched in his mind, his renewed vigour is now a constant presence in his life.

The invaluable lessons he has learnt along the way continue to shape him as he strives to be a better person.

Before cancer, I was focussed on money, PR, all the superficial things,’’ he says. “But surviving has made me more compassionate. I really know myself now after cancer; my strength and my willpower.”

He has a message for those stuck in the rigours of daily life.

Don’t take life for granted. Be funny, be bold and do good to others.”

Wise words, indeed, from a man who gambled with his life and won.

 

****

Text by: Casey-Ann Seaniger (Australia)

About the author: A jack of all trades but master of none, Casey describes herself as a newshound, political junkie, storyteller and bibliophile who is not fond of the status quo. She is fascinated by the stories of ordinary people from around the world and finds herself home sick for places she’s never been. Casey has an interest in Nepal and is learning Nepali. Casey has a Bachelor of Journalism (Hons) and works as a journalist and intercultural relationship blogger in Australia.

Read her blog at www.whitegirlinasari.wordpress.com

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2 comments on “Fate & Courage : Manish’s Story

  1. shubham says:

    Truly inspirational

  2. Nitesh Raj Pant says:

    “Real Hero”and Winner Manish Subedi. Thank you Casey-Ann Seaniger (Australia) for detailing the story. Looking forward to see you soon Manish.

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