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Opinion: 'Being stuck in a wheelchair without hands or speech is such a challenge as a mother'

Emma Fitzpatrick writes about how she doesn’t care for statistics – and focuses on what she CAN do, rather than what she used to be able to do.

Emma Fitzpatrick

EMMA FITZPATRICK WAS diagnosed with Motor Neurone Disease in 2010. 

She is now 47 years old and lives in Kinsale with her husband Jonathan (Jonnie) and their two children Rowan (9) and Alannah (Kitty) who is six. 

She started writing her blog – Shape Shifting Emma – using the Tobii Eye-Gaze computer in September 2012. Here are some of her recent blog entries and you can read and see more here

Reflections on Christmas 2013

Posted on 6 January 2014

I was wondering about how I was doing this time last year and both Jonnie and Mum reassured me I appear stronger and more content. There is truth in their observations as I feel more able to cope and I recognise my limits with tiredness before they get out of hand and the whole house is affected. Yikes when that happens!

Jonnie did a fabulous job of the turkey and ham thanks to some YouTube advice from Gordon Ramsey early Christmas morning. Lucy [Emma's sister] did fabulous veggies, Tomas made heavenly sherry trifle and Mum laid a beautiful table. The kids were delighted with their seemingly-endless amount of presents and the day flowed with the usual sense of hibernation that only this day brings.

Being stuck in a wheelchair without use of hands or speech is such a challenge as a mother.

A fellow sufferer who I’ve been in contact with described it as “raw grief”… Not being able to wrap a present – unwrap one for that matter. Not being able to share the joy spontaneously with the kids early Christmas morning is a bummer. However, without dwelling too much on what I can’t do, I am often spontaneously surprised by joy too.

Kitty, for the second year running, came into my room with a present for me to open after she opened her first one. Her thoughtfulness is something I‘m so proud of, she’s such a wonderful little girl.

We get to snuggle sometimes at night too if she sleeps downstairs. She puts her little hand in mine and I lift my leg to make way for hers. Then she serenades me with songs and one-sided chat.

How I wish my voice was alive for those extra special moments.

“I like myself”!

Posted on 14 February 2014

Recently I’ve been discovering lots of things. I hit a low patch when both big toes got infected and ingrown. When the doctor took one look she hurried to her bag to write a prescription for antibiotics. The thought of taking them was depressing as I knew how they wreak havoc on my system. Also, they have a habit of putting me off my food and the prospect of losing weight from my already thinning body was turning me right off.

So I spent the weekend with toes immersed in salt baths, taking homeopathy for infections and imagining healing energy was running through my feet. When the chiropodist came on the Monday she was happy enough with them and I didn’t have to take the antibiotics. Yay! What a great feeling of accomplishment I had!

Then other changes started happening with my body which worries me as I had a year or more of practically no change. I noticed after sitting in my wheelchair for a few hours or more, my bum and shoulder blades were getting sore. This pain on my pressure points was a result of having no ‘padding’ on my bones, I was told, but nobody seemed able to advise me on how to overcome this.

It was only when we suggested an alternative cushion to sit on that they came up with the goods. Now I’m in bum heaven but the shoulder blades are not!

Mum came up with a great idea of putting a layer of sheepskin between me and the chair and that has really helped. But the physio noticed when I was doing my bi-weekly stand that the shoulder blades had actually moved inwards through lack of use.

Well what d’ya know! Who would have thought these bastions to flight as I‘ve often thought of them, could be affected by the constant sitting. I felt my wings were well and truly clipped.

Wayne Dyer [a motivational speaker and self-help book author] says trust in your true nature. Kids too “know what to do” he tells us. If there’s one thing I’d like to pass on to mine, it would be to teach them to trust in their own nature; learning to listen to themselves in front of any decision big or small.

So I’ve been trying to remember when they ask me for more screen time or another biscuit to say, “What do you think is the right thing to do?” And despite an obvious cheeky answer they usually know when enough is enough.

When all that anxiety was rattling through my mind about the toes and shoulder blades, plus the concern about losing weight, I got a bit overly consumed by it.

It was only after a while – when I was less ‘consumed’ – that I realised I had actually missed myself!

I like myself and feeling joy would have always been a huge part of who I am.

Getting to like yourself isn’t easy but learning to trust in your decisions and listening to your inner nature helps. I thought about how long I’d been on that path recently when my cousin asked me about my thirties and what I’d discovered in those years.

I told her that I’d learnt to trust in my gut instincts. I knew when I met Jonnie in a popular bar in Cork on the eve of Valentines sixteen years ago, I’d discovered a gem! It felt right to be with him. So I went with that feeling.

Another important thing to me for the kids is their music education. This is something I can actually do, thanks to the wonders of modern technology. I can bring up rock and roll masters like the great Jimi Hendrix on my eye gaze, or the fantastic King of reggae Bob Marley.

Pop seems to have taken over the music world these days so I need them to know what’s what and who’s who! It’s fabulous for me when they sit on my lap and we listen to something together. Divine time! I heard somebody wise say recently, “Do what excites you.”

Music excites me, and I’m thrilled to be made aware of it again seeing as there’s so much I can’t actually do.

Pro Cal Junkie!

Posted on 19 May 2014

At the last meeting with the consultant at the hospital in Cork she was delighted with how well I’m doing. To be honest, it didn’t mean that much to me as I feel it’s just luck that I haven’t popped my clogs before now.

However, since diagnosis almost four years ago I’ve never really thought I would go to my grave prematurely.

Ignorance is sometimes bliss as I have to admit that I barely knew anything about this disease and preferred it to stay like that.

I only found out recently that 75% of people with MND die in the first three years.

On that awful day, I clung to the words: “It affects everybody in different ways”. And to this day, that sentence is my saving grace. I’ve heard of many people living with this condition for many years so I refuse to buy into the statistics.

I mentioned recently here that my shoulder blades etc. were getting sore after a while in the wheelchair. With this in mind, I asked the consultant if I could speak to the dietician while I was there. Lucky I did because she recommended bumping up my calorie intake via a product called Pro-Cal. Now I’m a Pro-Cal junkie! A month on from taking it regularly after meals – mixed with a smoothie – I no longer get pain.

I even remember voicing my concerns to Lucy prior to our recent Dublin trip about not being able to stay in my chair for long periods of time and how this would affect the visit. But it didn’t and you know how the holiday went? It was a great success! And I felt really comfortable in my chair.

After a recent course of antibiotics, my breathing was affected. The doctor recommended using an inhaler temporarily. I was extremely worried, more than ever. The doctor was taken aback by my concern.

“If my breathing goes,” I told Lucy, “I’m screwed.”

Four days of terror followed. Not even the doctors words of reassurance that it could be a post chest infection blip helped. I honestly thought I was on my way out. I was terrified. In the past four years, I have not been scared of dying but now I was. I found myself longing for the time before the infection when everything was OK and manageable. I didn’t realise how lucky I was before.

Thich Nhat Hahn, a Buddhist poet, talks about the “non-toothache” – that is, the remembering of how good it feels NOT to have that horrendous pain in your mouth.

Only when everything passed a few days later could I experience the non-toothache again.

A major coughing episode seemed to loosen and clear the airways, leaving me free to get over my panic and continue getting on with my life.

I’ve been feeling so well since then with a “no toothache” attitude to life.

The Irish Motor Neurone Disease Association (IMNDA) is the primary support organisation for people living with MND, their family and carers. The vast majority of its income comes from fundraising and the generosity of the public. 

On Saturday 28 June, The June Ball takes place in the DoubleTree by Hilton Hotel, Burlington Road, Dublin 4 to raise much-needed funds for the charity. Drinks, food, free wine, games, bands, DJs, a raffle for Garth Brooks tickets and more…

Tickets can be purchased online for €90 here. For more information, check out the IMNDA’s website and @thejuneball on Twitter. 

Column: How I live my life with Motor Neurone Disease

Read: Longford-Westmeath TD Nicky McFadden to be laid to rest today

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About the author:

Emma Fitzpatrick

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