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When motor neuron disease came into my life

Madhubala Christina Fendel. Photo supplied.

Timothee Diers

There are events in our life that we call ‘life changing’ and there are events that are life-markers: scars from trauma and bad experiences that never heal. But there are also events that transform us, that lift us out of an unthinkable event. This is such a story, and it is mine.

It all started in April 2015 when my wife’s voice began to change. After eight months she was finally diagnosed with Motor Neuron Disease (MND). That year and the four months following can only be described as the most profound chapter of my life. 

I can now look death in the face. I have seen it. I have witnessed the coming to the end – its nuances, the rays of hope, believing a miracle may happen.

The care giving – nights and days, for months with little food or sleep, losing hope, the heart breaking over and over. At the end, I would sleep on the floor beside her bed and turn her every half hour since she could not move.

And she was alert. Her mind, as far as I could tell, was not affected. She could not speak for the last 11 months, but she could communicate by writing, and finally, by slowly typing on her mobile phone.

She had a feeding tube for the last five months through which all liquids and nutrients were fed. The deterioration happened slowly, and then quickly. 

Looking for the miracle

We travelled for nine months around the world looking for the miracle, hoping that someone, somewhere, would crack the code to heal the incurable disease. We went first to India, then to Germany, and finally to Southern California for cutting-edge stem-cell treatments. We travelled into Mexico for experimental treatments not yet allowed in the US. We saw healers who guaranteed that she would pull through.

We did everything we could, and in the end, we came home. Back to the Pocket Road, back to our beautiful home in the rainforest, surrounded by nature and our friends. It was an unbelievable journey, and we met beautiful people, all wanting to help.

She died in my arms on 5 April 2017.

I could tell you of our 18 years together that began when a mutual friend showed her a photo of me in Corfu, and she fell in love.

After five months of correspondence I flew from the States to meet her and we started our life together here on the Pocket Road. Our love story was, in the beginning, and for the most part, like a fairy tale, but the miracle we were looking for at the end turned out not to be physical, but an inner one.

Life choices

The year following her death was pretty hard. I felt the knife in the heart. I know the dark place where people go when their partners die and they give up living. I came to a crossroad – to shut down, or to move forward with love and acceptance. I chose love.

Just before the anniversary of her passing, I journeyed to the south island of New Zealand for my own designed vision quest – to find myself. I rented an old van and went into the mountains. I stood in those old beech forests under towering mountains and claimed my life again.

People have told me that MND is the most horrendous disease that can happen to someone, and that it is a mistake in the plan of life. This is what I say: that this disease was a gift. It demanded everything; it demanded surrender to something bigger than us. Our hearts broke over and over. Finally there was nothing left to break and there was only love. I know now this is what is eternal. To say that it was a mistake is to discount those two years that taught us that love is the most powerful force in the universe. I value those days. I honour them.

The morning she died, something opened, and the space in the room was indescribable. Beyond religion and spirituality, it was tangible. During the months that followed, many events happened that I couldn’t dismiss as coincidence or things I made up. Some would call them miracles.

My day will come, as will yours. And my wish is that I spend these remaining days in love and awe and wonder, and that I see each moment as a privilege to be lived in.


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2 responses to “When motor neuron disease came into my life”

  1. Warren says:

    A very sad story. I have recently learnt of a good friend who is just over 50 years old and has been diagnosed with this horrible disease. Prior to knowing this, we communicated a lot via messenger etc so I didn’t actually have a conversation with him so it wasn’t until we actually spoke over the phone that I realized how it had already affected his speech. I am now making it my business to visit him and sit down and talk to him face to face and enjoy each others company. No one deserves this disease and I admire his and his families courage as they tick off the bucket list. My thoughts are with anyone who has been exposed to this illness.

  2. Ellen Sackett says:

    Thank you for sharing your beautiful story Timothee.

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