“’Men don’t cry’ that was the phrase I was bought up with. I grew up in a physical town, ‘tough’ was what I tried to live up to and that meant not to cry, not to complain, just get on with it. That’s what I thought I was meant to do.
I was a physical kid, loved sports, loved pushing myself and loved the feeling of ‘overcoming.’ Once in my teens I obtained a job as a line mechanic (installing power-lines and fixing powerlines) and I was also one of New Zealand’s fastest 800m track runners.
I was strong, fit and extremely determined and focused to represent my country in running. This is all I knew, running and work, that was life to me. Then at the age of 23 I was blindsided, at the peak of my athletic career. I had become the fastest 800m runner in the country. Two months later I was running a different race, one that would change me physically, mentally, emotionally and spiritually, forever.
I was diagnosed with Acute Myloid Leaukemia, a word I never knew existed, cancer! What the? Me, tough, strong fit and fast Josh, no way. People like me didn’t get cancer. I was so naïve, I had no idea, no idea this was the start of my life where I was about to understand what real pain was, what crying was really like, to understand who I really was.
I had seven months of chemo, it was a nightmare, shitting myself, spewing up, in constant pain, I lived on morphine and cried so much I could sink a ship with the amount of tears and the howls. What was happening to me, what were these tears about, why did I want to die? I didn’t know how to talk, how to say I’m not ok, because I wasn’t. I looked at myself and saw a weak pathetic alien. I hated the person who looked back at me, or was it I hated where I was?
I didn’t know how to control my thoughts, one night when I was allowed out of the hospital for a week, I was staying across the road in a small apartment where the hospital puts you up for recovery during treatment. I could not control my thoughts and I lost myself completely. ‘Fuuuuuuucckkkkkk’ I would scream in my head; ‘die you loser, you useless piece of shit, you’re good to no one!’ I walked to the balcony in a rage of frustration, anger, sadness, confusion. I had lost myself completely. I was in a dark hole; ‘Jump’ I said to myself ‘jump’ you fucking coward, just do it, no one loves you, you don’t even love yourself, do it.’ As I put my leg over the rail wanting to end my life, a soft, still breeze swung upon my head like God was talking to me. The breeze swung my head to my mother’s empty coffee cup sitting half drunk on the table. Mum had left to go and get the groceries. I felt her warm lips upon me as she’d left them on that cup of hers. Kissing me, saying ‘I love you Josh.’ My loving mum who brought me into this world, I felt her love sweep into my heart and embrace me as a young child.
I came back and sat on the chair. I cried and cried, my hands were on my head, sweat was pouring down my face, ‘why is this happening?’ I motioned to no one. I needed help and to be strong you need to ask for help. I summoned my strength and decided to get help from a psychologist. I sat with him and his words ‘Josh, YOU don’t want to die, it’s the situation you want to die.’ And that was it, in a nutshell. I didn’t want to die; I loved life, I had dreams of going to Mt. Everest base camp, becoming a skydiver, etc. I just hated the situation I was in. I loved my mum and family so much, so I decided to grit my teeth and go through the pain to find myself again.
Finally I had finished treatment through four rounds of chemo which was five months in isolation. I loved nature and was excited for the time to connect again. Back in my home town of Greymouth, New Zealand I connected with friends, family and nature. I stayed strong and decided to live my dreams. I went to basecamp and became a solo sky diver all in 10 months.
I was alive and free, happy with who I was, loving life for what it had given me.
Then my body started to deteriorate, I knew I had cancer again, I knew what I had to do this time. it was going to be harder as my Dr. had instructed me I would need an allogenic stem cell transplant if I relapsed. And sure enough I had.
I sobbed to myself quietly, accepting it but deeply disappointed. Treatment started again but this time I had found a girl, a wonderful girl to share my pain with, someone to hold my hand. Her name was Clara, we met on my travels overseas and she was here with me to fight this disease together.
As soon as the chemo started, I fell ill. I was sent into ICU where I was placed in a coma, my family were told I might not wake up.
I had contracted neutropenic sepsis. I was dying. After 10 days I stared to turn around, I had come back to life. The tube was out but I couldn’t talk or walk. I was so weak and fragile, like someone had replaced my body with someone new. The following week I had my transplant stem cells transplanted from a young girl all the way from Germany. It wasn’t a perfect match so there was a high chance of graft rejection, graft vs host disease (GVHD). During my transplant, I was in a semi conscious state. I did not know where I was; hovering between the sky and the earth. I loved my life, I wanted to carry on and soon I was back.
I developed graft rejection. I was on on medication to hold the rejection off but now I had lost myself again. After 18 months, Clara had broken up with me and I fell down the dark hole once again. I loved her and now I had lost her. I was on my own but I had my mum, my brother and sister and two special friends. I knew how to talk and now I knew how to cry. I would carry on having high meds I developed Trigeminal neuralgia aka the sluiced disease. The pain was immense, it’s described as the worst pain known to man. I cried, howled, swore to God and swore to myself. And I fought. I carried on.
After three months in hospital. The Gvhd had developed a lot worse, the normal medication could not hold it any longer, I was then sent to Melbourne Australia to receive a special treatment called ‘extra corporal phototheresis.’ (E.C.P) This would help down regulate the graft rejection (GVHD). I had a purpose, to survive. I held onto it like a child holding his mother’s hand. Like my life depended on it, every bit of love I had for life, my family and for what I would do when I broke away from those invisible chains of this disease. The ECP went well for 8 months until I started to develop heart problems. I had numerous heart attacks and had to receive a stent in my left main artery. How much can a man take. I carried on,
Soon, the ecp had my gvhd stable. I would fly between New Zealand and Australia. The gvhd had glued my body together, it had taken the pigmentation away from my skin and my face looked like a chess board.
Though my body had changed, my soul hadn’t. I knew who I was; I was alive and surviving. On one flight to Melbourne I sat next to a pretty girl named Sibille. We spoke and hung out for the week, Sibille was a cancer nurse. We fell in love. She is empathic, kind and caring and extremely lovely. I love her to bits.
My fight was worth it to find this girl. The love of my life. Though I look differently and I’m not the same person from the outside, I grit my teeth and preserved. I held onto love like my life depended on it because it did. I found a special girl, Sibille whom I have been with for three years. I still get treatment in Australia and I still continue to fight. I will still continue to cry ‘as a man’ and a still continue to love.”
This story was submitted to Love What Matters by Josh Komen of Greymouth, New Zealand. Follow his journey here. Submit your story here. For our best love stories, subscribe to our free email newsletter.
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