Emma Fitzpatrick was diagnosed with Motor Neurone Disease in 2010. She lived in Kinsale with her husband Jonathan and two children Rowan and Alannah (Kitty). Emma kept a blog – Shape Shifting Emma – she wrote this by using the Tobii Eye-Gaze computer. Below are 3 of Emma’s blog entries, you can read more at http://shapeshiftingemma.wordpress.com/
Reflections on Christmas 2013
Posted on January 6, 2014 by Shape Shifting Emma
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’s truth in their observations as I feel more able to cope and I recognize 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 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 or unwrap one for that matter, or 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.
Giving Thanks and Stuff
Posted on January 21, 2014 by Shape Shifting Emma
I found myself in a church in Blackrock the other night at a removal. My neighbour‘s mum had suddenly passed away after a massive heart attack, it’s so sad and unfortunate for those left behind. The church had a lived in feeling, a lovely sense of life about it. I couldn’t hold back the tears when I saw the coffin and distraught family members following it down the aisle. My heart was breaking for poor Annemarie. I remembered my own Dad’s funeral fourteen years ago and how sad everybody felt at his too, sudden departure.
The priest said something about guardian angels that touched me. I thought about Jonnie as my angel and how lucky I am to have him here especially now in my hour of need.
No matter how unfortunate my life situation is right now, I find it hugely helpful to give thanks for all. Family, friends, neighbours, carers, home helps, Jonnie’s job which he loves and all that I am able to do.
Every two weeks a lady called Ann comes to do energy work on me. Its’ official name is bio energy and it involves scanning the body’s subtle energies or aura and seeing where it’s blocked. She works with the chakras too, again seeing if they’re imbalanced and then putting them right. I believe this to be really helpful. When living in France in my twenties I also practiced this kind of energy work. I remember living in a rural part of the Pyrenees where no other Irish person had lived before it seemed. Apart from dedicating the best part of every day to painting and making intricate collages myself and a friend also did this kind of energy work on the locals. I remember one elderly ‘paysan’ Francois getting attacked by a swarm of bees, his hands all swollen and sore. I put my hands over them and wished them well. He seemed to get instant relief and the following day, I was his absolute hero as he said I had cured him! My prize was part of a wild mountain boar to cook and a gallon of red wine! When I think of that I only wish I could cure myself now!
Saw the film ‘Gravity’ the other night. I really thought it beautifully shot and directed. When the female lead touches earth at the end I deeply felt her relief and love of being able to feel sand on her toes again. Oh how I long for that feeling!
“I like myself”!
Posted on February 14, 2014 by Shape Shifting Emma
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 had me worrying after 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 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’s really helped. But the physio noticed when I was doing my biweekly 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 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 thing important 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 listen to something together, divine time! Somebody wise I heard say recently said “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.
Emma sadly passed away on the 27th of February 2015. Her amazing blog has recently been made into a radio documentary. To listen to this documentary you can hear the episodes by following this link.
