Saturday September 15th 2012

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This morning at ten the ladies came to get me up and shower me. This is a service much valued by me. These carers are friendly respectful and fun. Most have seen me travel down the most challenging road of my life, seen the changes last year when I could drive to the sea or collect my kids from school to no longer being able to walk or talk.

This disease most cruel has taken with it the use of my upper and lower limbs. It has also took my voice. Thanks to a great speech therapist along with the fantastic CRC  [central remedial clinic] I have an eye gaze computer. No payment is necessary for this machine that has given me a voice. It’s invaluable. Writing with my eyes, I stare at a letter and it comes up on the screen. Yes, its amazing! There might not be a cure for MND yet but a big high five for those who created the eye gaze.

So, this morning a stand-in lady came. The other lady has been here from the start. Stand-in has been here before and to put it politely she wouldn’t be my favourite. I’m referred to as ‘she’, not by my name which is Emma. The most upsetting moment was when she said ‘shove her back there ‘ referring to me in a post shower state. It’s ignorance pure that makes a person speak like that to another. But I was horrified! I couldn’t even stand up for myself. Writing this is a vent thank god. But I will be making sure I don’t have the misfortune of working with this person again.

Here is a lovely quote my cousin Nickey shared with me:

“In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”
Lao Tzu

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8 responses »

  1. Emma,
    It is a privledge to know you and your beautiful cousin, Nickey. I have worked with Nickey for many, many years and through out that time we would talk with each other about our families and friends, so I feel I know you a little bit. I do love the quote from Lao Tzu – it hits all the right points in reminding me what is important. Thank you for blogging about your life. It gives me a small glimpse of your world and an important reminder to us caregivers not to impersonalize the people we care for. Thank you for sharing that. I think you are a beautiful, courageous woman. I can only imagine your suffering, but I see your spirit shining brightly and am thankful that you have this amazing eye machine.My love to you and your family. I hope I hear more from you!
    Janine Marley (on the other side of the pond)

  2. Emma,

    And another hello–a quick one, it is late here–and warm greetings from someone else across the pond.

    Please keep writing when you feel inspired to.

    Niki’s Boston friend,
    David

    (And the important question of the day is whether it is Niki, Nickey, Nicki, … no one knows, least of all Nicola!)

  3. Hi Star,

    You ARE the STRONGEST person to have ever crossed my path. I am so,so happy you have set this up to share your stories! It is a total pleasure to read ( even though it can raise my blood levels at times with stories like in this one ) . You certainly have had a very interesting life so far & have so much to tell!!! Thank-you for being the coolest sister IN THE WORLD & for keeping a smile on my face. Je t’aime,
    DOL xoxoxoxox

  4. Emma (aka Gus),

    You have a wonderful way with words – what a piece Em. I am so proud of you. Fight on and write on! Love galore…mella

  5. Greetings from Spain. This is Paz, Ana’s cousin. I have heard a lot about you from Ana. It’s great you can share your experience with the world. I was amazed to read about your eye gaze computer. It’s wonderful how technique can help in diseases like yours. And well, regarding that stand-in lady, it’s a real pity those kind of people choose to be such a misery even when they have the chance to give love and support to other people and in that way make the world a better place.

    I would like to tell you that your posts will be read, that you are not alone. Maybe I won’t write a comment every time you blog something (I’m usually pretty busy with my work and things) but be sure I’ll read it all with interest and I’ll try to send you some virtual Spanish sunshine when I can.

    All the best

    MPaz

  6. Hi Emma Bear! Lucy told me about your blog a few days ago. I haven’t seen much of you since the glory days in Sandymount in the late eighties but reading your words this morning brings back vivid memories of the gorgeous young bear with the twinkle in her eyes 😉 Thanks for brightening up my day. Dermot

  7. Hi Emma, Wayne here. Long time no speak. Just met Lucy on south william street a few weeks back and she just passed me on the link to your blog today and i just enjoyed reading it there. Your positivity is pretty infectious.Keep it up.Good to connect with you on facebook too. Your kids are gorgeous. I’ve four daughters myself, the eldest, Faye, was twenty yesterday…What the hell happened there?? Anyway keep writing, its good stuff. Especially love the Lao Tzu quote at the end! Looking forward to reading more! Cheers Wayne

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