“Why is This Happening?”


Very low this week. I can’t stop crying. It might be hormones (PMT). Nonetheless, it stinks!
Colm Murray ‘s passing (RIP) this week was very sad. He was diagnosed with MND the same year as me. I remember not wanting to listen to him talking about it that year 2010 on the “Late Late Show ” as the shock of my condition was sickening me. In fact I couldn’t listen to anything about him on the news this week, it scared me to the core. I opted to listen to Mr Dyer instead. More life-giving. And I focused on thoughts of others living with this condition for many years. Also my husband reassured me he thinks I look way better than this time last year. I feel well overall thank God. I feel I have many years in me yet.

At night, in my dreams, I still walk and talk. (God be with those times!).

I feel like saying to everybody: “don’t you realise how f ing lucky you are to be able to do those basic things like walking and talking?” It is so crap that I can’t. People don’t seem to realise how lucky they are.

I nearly went out of my mind on Saturday last when this computer broke down. It just stopped working. Imagine the stress; Saturday morning, house in a chaotic mess, kids squabbling over TV and I planning writing this, texting and emailing for ireland! But none can be done. I can’t even vent frustration or contact a pal. Poor Jonnie has to endure my anguish. I go into my bedroom and again, cry myself senseless. Luckily Mum took the kids to Kerry. We planned this earlier in the week and Jonnie and I were looking forward to a weekend on our own. Mum had come from Dublin to help us for a few weeks while waiting for our new aupair. She was doing a fantastic job, giving me breakfast every morning, texting for me, looking after the kids etc. She’s really amazing. so when they left, I went into meltdown. I couldn’t believe our weekend was kaiboshed. How could I possibly manage without my voice? 

Sunday was a new day. Jonnie had been asking me to try an alternative form of communication which is operated by a switch placed on my head rest. A screen, similar to the eye gaze, only smaller, brings up the letter when the switch is tapped. I gave it a try and despite the unbelievable slowness, I felt like a small miracle had taken place. With ‘Head Gaze ‘(as somebody named it!) in tow we headed off to Cork city that evening to watch a movie in the wonderful Triskel Arts Centre. We were ushered in to ‘Christchurch’ which houses the arthouse movies. Jonnie got a drink and brought it in to the ‘pew’ seats, We were in our elephants! (i.e. element!) It felt like the first time since diagnosis that we were really having a good time ‘out’ in the big city where our hearts had first met. It didn’t even matter about the movie, just being out, holding hands was enough. Knowing that we can still go out and enjoy time together is so good.

The following day, Monday, before collecting Mum and the kids from the train we went to U.C.C. An old friend who is a photographer and living in England, is in an exhibition “Modern Families” in the Glucksman gallery there. But, unfortunately, it is closed Mondays so we didn’t to see Trish’s work. Instead we roamed about the ‘Alma Mater’ stopping at a bench in the main quadrangle in front of the Boole library. I broke down again using the head gaze to tap out what I was feeling: “why has this happened”. I only finished college under thirteen years ago and look at me now. Jonnie, very wisely, pointed out how much we have since then: two great kids, a lovely home. Then a sentence that would transform things for me “you can choose you know, choose to live this well “. I tap out “really helpful thanks ” and armed with renewed strength we leave the University.

Little do we know what the week has in store for us. Two days later Mum trips in our back patio and fractures her pelvis. While Jonnie takes her to hospital Maria, our new aupair, who arrived late the previous night, is stuck head first into Irish family life. I am sure the poor girl, who was also suffering from a sore throat, didn’t know what hit her. If I was in her shoes, I’d probably have legged it back to Gran Canaria! She is left with the task of looking after me for the afternoon. I’m worried sick about Mum and completely stressed out. She kindly asks if I need anything. All the while, still with head gaze and unable to contact anyone and too pissed off to tap out “can you text Jonnie?” (my phone is so complicated) I can’t even begin to answer her.

Ana usually comes every afternoon but unfortunately she is suffering badly at the moment with her wisdom teeth. She rarely misses a day but on this fateful day she can’t make it. Sh**! “WHY IS THIS HAPPENING!”

Today August 13 Tuesday: Mum is recovering in an apartment which forms part of a care facility down the road two minutes away from us.
I was without the eye gaze for five days and I nearly went out of my mind. Now it’s working again but still not well. There ‘s a replacement on the way but I’ve been waiting all summer. The worst part about not having it was feeling trapped, locked in what seemed like a prison in my head. All that awful stuff going on and not being able to say anything, no wonder I couldn’t stop crying. It was hell.

Ana’s tooth has eased off now but she needs an operation to fix it.

The aupair is still with us!

5 responses »

  1. Oh Emma , my heart is broken for you. I can relate to all the above and how hard it is and I don’t have MND . I don’t know how you find your inner strength.
    Jonnies sentence ” you can choose you know ” is very true. You still have choices.
    I am lying here awake thinking of you and crying thinking of what you have put behind you over the last three weeks.
    But as you said tomorrow is another day. Thinking of you always.
    Cal x.

  2. Wow Emma, amazing post to wake up to as I get ready to take over from Shap at the hospital as felix has been re-admitted. He needs strong intravenous antibiotics for two weeks to treat an infection in the space where his pacemaker sits. I was very stressed and thinking after spending july in hospital with Felix getting over surgery, when will this ever end? now reading your words I feel very humbled.

  3. Morning Star,
    Speachless…….now I understand why you said ” survival ” last week. Knew nothing of the eyegaze trouble …. ( what is taking sooooooo LONG with it ) ?????
    Can’t wait to get back on Sunday to you all. Need to smother Mom with TLC & I know how amazing you & Jonnie have been to her since she fell. It is great that she is close by hein?! Feel so useless when I am away from you. Winter is only around the corner ( sorry! ) but it means back together again for more regular hang outs at yours or ours by the fire, sipping tea & eating cake!!
    Apart from all the bad stuff that happened it was glorious reading about the things you and Jonnie did together. Looking forward to having the kids for 2 night sleepovers at ours so you guys can do so much more of that. You are the MOST beautiful couple I know,most inspiring, most fun, generous , caring, cool & soooo much more. You deserve a GOLDEN GLOBE award :-))

    A dimanche :-))
    Dol xoxoxoxo

  4. Oh Emma, I have been wondering how you are, and had emailed Lucy to see if you had had your eyegaze fixed as you said it was playing up. I had been checking in to see how you were, so was very pleased to see this, but am so sorry that you have been experiencing such isolation – Eyegaze really is amazing technology, but not when it doesn’t work!!!
    I can’t believe that Toni has fractured her pelvis too! how did she manage to do that in your back garden, it doesn’t seem like there would be room 🙂 I know that sounds ridiculous but it seems like a very safe place! Wishing her well too! Very pleased to hear the upsides of your very bad week, of you and Jonnie out and about enjoying time together, what with Ana and her Wisdom teeth, the Au Pair and her sore throat, it really seems that you all can only have a better week ahead! and I truly hope you do! Sending lots of love, thinking of you always, Rach XXXXXX

  5. You forgot to tell everyone Em, that despite the tears, the sadness, the frustration, the isolation, you still managed to organise the most thoughtful present of beautifully planted roses for myself and John and had them ready at our door last Thursday! An amazing friend, an amazing woman. Living and loving better than most of us. See you soon Gus, so delighted you will have Lucy on Sunday. Big shout out to all in Kinsale. I think of you everyday and wish this wasn’t your lot xxx

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