Marilyn's Story - IMNDA

Marilyn’s Story

January 23rd, 2023

Hi, my name is Marilyn O’Connor and I live in Cavan. I am an author of several books and film scripts, and I also wrote and directed two award-winning short films. I was a public speaker on domestic violence and for years I trained on Gardai Siochana on domestic abuse awareness from a victim’s perspective. I am a mother of 4 children and a grandmother of 2 beautiful children.

I loved gardening, adored cooking and playing my guitar, wearing makeup, doing my hair, dressing up, wearing heels, and generally enjoyed living independently and freely.

On the 24th of August 2022, I was given the devastating news that I have motor Neurone disease. This has affected me in several ways but particularly with the loss of both my hands and arms.

When I came out of the hospital on the day I received my diagnosis I had a meltdown and that evening I just wanted to end it all. I was full sure in my head I was not going to face this next chapter, and, in my head, I started planning to go to Switzerland and have euthanasia. It was not the fear of dying but the fear of what lies ahead having this diagnosis at such a young age.

The fear and shock were so overwhelming as up to now I have been living a healthy life, conscious of a healthy diet, looking after my body, meditating, walking, and generally caring for myself. But now I can’t feed myself, dress, shower, brush my hair or put on my makeup. I can do very very little for myself anymore and will never be able to be independent again.

Somehow, I have overcome all these negative thoughts and emotions and I am now embracing my journey ahead and finding ways of coping as best I can.

One of the positive things that has happened since my diagnosis is I have learned to accept love. I was always the giver and found it very difficult to receive and I realise I have hurt people by not acknowledging how much they love me.

Although my diagnosis has been very recent, I have prayed, and I have meditated, and I am experiencing the most unbelievable peace and acceptance of my diagnosis. Peace and acceptance that no words can explain.

I know as this disease progresses, I will face new challenges but with this peace and acceptance in my heart and soul, I know it will help me cope and deal with every challenge that comes my way. I will do this also with the love and support I have from those close to me.

My mission and my reason for sharing my story is to raise awareness of MND in women. For every 10 men diagnosed 7 women are also diagnosed, although less common it is a huge statistic. There are currently just over 420 people registered on the Irish Motor Neurone disease association register with approximately 150 newly diagnosed every year.

Currently, there is no cure for this disease, but we will never lose hope that a cure could be found soon.  I want to raise the profile of the wonderful work of the IMND association, and I am planning a fundraising event after Christmas. The funds will go towards MND for purchasing equipment, increasing more specialist nurses, and finding a cure through research. I am hoping people will lend their support to help raising funds for this worthy cause and I will be setting up the links where people can send their donations through to MND directly.

I am also posting my journey as long as I am able to talk on the MND website and I welcome you all to join me into the future and support me on my path of living the best life I can live for now.


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