Marilyn’s taking one step at a time

A Cavan woman has spoken of her devastation at learning she had an incurable, debilitating disease, writes Michael Keaveny.

Marilyn O’Connor from Crossdoney was diagnosed with Motor Neurone Disease in late August. It came as a complete shock to her, as she had very few symptoms beforehand.

I worked in Harry Corry’s in Cavan and noticed a few difficulties lifting things etc. I was meant to have an operation for a trapped nerve in my neck”, Marilyn says.

“But my physiotherapist said weakness in my hand was not conducive with the trapped nerve in your neck. I think it’s a good idea if you saw a neurologist. There was nothing wrong with me other than I had a weakness in my hand and pain in my arm.”

Marilyn underwent tests on August 22 and, just two days later, doctors delivered the devastating diagnosis.

“I didn’t react. I just said okay and asked ‘how long have I got?’, which was a silly question because nobody knows how long anybody has got. It wasn’t until that evening when I came home and I was sitting here with my partner Adrian that the enormity of it hit me very hard.

“It was just so overwhelming. I’m not afraid to die. It’s what this disease does to you. It strips you of everything that you are. It takes away all your motor skills. Your mind and your hearing stay the same so you’re aware of everything that’s happening. The enormity of that... it was so bad I actually, totally irrationally, wanted to go to Switzerland and have euthanasia.”

However, Marilyn prayed that night and came to an inner calm that has stayed with her since.

“Getting distressed and upset and feeling hard done by, or feeling ‘poor me’, it’s not going to make me better. It’s not going to do anything. I can’t explain what happened that night when I prayed.”

The disease has had a major impact on how Marilyn performs simple tasks she previously took for granted.

“It feels like I have a pair of boxing gloves on and a brick tied to each arm.

“Sometimes when my voice gets tired, I sound drunk even though I’m not. Even though I can walk, occasionally my legs act up. They just start shaking and jumping all by themselves. I can’t control that. I have a great fear of falling,” she outlines.

“Everything that I am and everything that I love as a woman is gone. I’m totally dependent on Adrian. I can’t lift my hands. I can’t brush my hair. I can’t shower myself. I can’t dress myself. I can’t feed myself. I loved playing my guitar, cooking, and gardening. I drink from a straw because I can’t lift the cup. Going to a restaurant is a very excruciating ordeal for me. I still want to be able to go out. I’m a very tactile huggy person and I can’t even give a proper hug. I can’t lift up my grandchildren. I’ll never be able to lift them up. I don’t know if I get to see my daughters get married. Those things sort of pop in my head.”

Marilyn is hoping to make more women aware about MND.

“It is predominantly a man’s disease, but there are currently 417 cases of motor neurone disease in Ireland, and 40% of them are women.”

The traditional role of women is complicated further by the disease, Marilyn feels.

“Most women are the homemakers, they’re the caregivers, they’re the organisers... raising four children, going to football matches, giving lifts to dancing and doing the shopping.”

Symptoms too can be confusing for women.

“It’s difficult having Motor Neuron Disease and also having to go through menopause. I don’t know some of the symptoms I have. I’m thinking ‘is that because I’m menopausal or is that to do with my Motor Neuron Disease?”

Prior to being diagnosed Marilyn led a very active lifestyle. “I used to love having dinner parties, I adored cooking. I loved gardening I loved growing all my own vegetables, and I used to swim 50 lengths every morning. I would have been a very healthy eater. But it can hit anyone, they don’t know why people get it. To date there is no cure. There is a tablet I take and it’s to try and slow it down, extend your life for two to three months. Although there are lots of trials at different stages, there is still nothing out there. It’s a horrible, cruel disease.”

Marilyn says the supports in place for patients are good.

“There is a fantastic Motor Neurone Disease Unit in Beaumont Hospital. I have a physiotherapist, an occupational therapist, a speech and language therapist, specialist nurses, and a psychologist. They have a unit up there and it’s got every person that you would need to speak to. The Irish Motor Neurone Disease Association is also fantastic,” she praises.

After receiving so much help with her condition, Marilyn wants to give something back and has organised a Valentine’s Ball the Cavan Crystal Hotel on February 10 in aid of the Irish Motor Neuron Disease Association to support the “wonderful work they do”.

“I wanted to inject some of my personality into it so,” explains Marilyn, saying she hopes people will dress up and raise as much money as possible.

“My aim is to keep my legs strong between now and February so I can walk into the ballroom and have a dance.”

Marilyn’s outlook on life involves taking things one step at a time.

“I take every day as it comes. This is the truth. I wake up every morning and I find something to be grateful for. You know, I am grateful that I can still put one leg in front of the other, even though I walk like a duck. I am grateful that I have somebody in Adrian who loves me so much and is willing to take such good care of me. I am grateful that my voice still works. I am grateful I have a roof over my head...

“Going forward, whatever I’m dealt with, I’d like to think that I will keep this peace and acceptance I have in me because I can’t stop it. The one thing that I can control is my attitude towards the Motor Neuron Disease and how I deal with it.”

Tickets to the event can be bought by searching ‘Dance When You Can Valentines Ball’ on Eventbrite.