Tag Archives: SMA

My adversary

by Sheonad, Touch & Tickle

There are signs everywhere you look – road signs, shop signs, café signs – they convey  information and can only be thought of as a sign if we attach meaning to them.  They tell us which way to go, where to have a coffee and, sometimes, that we may be unwell.  Yes, there may be signs if we are unwell…

Signs can be medical and objective, being noticed by others and detected by GPs, but perhaps missed by us.  If you think about it, a sign isn’t a sign when we cannot read it or don’t understand it.  Sometimes we are blind to what is closest to us.  I missed my signs – I thought they were the sign of a busy life – and didn’t stop to read them, missing their meaning.

There may signs – known as symptoms – that hint at the existence of something undesirable, like illness for example. Symptoms can be physical or mental and are subjective evidence of a person’s condition.  Again, I ignored mine, too busy – or unwell?  – To know better. I did see them, peeking round the corner, but hid away from them, thinking that I was doing so well, thinking that they were all part of my “normal”, choosing to ignore them.

Over four short weeks, they were there, showing themselves, nagging at me, taunting me.  A few more tears here and there; a temper short and frayed which found me shouting at the girls; the lack of concentration and motivation; a sadness which hovered over me no matter what; feelings of inadequacy and an inability to cope; an exhaustion so deep and dark that I thought I would never get out of it; and the overwhelming sensation that, no matter what, life was hopeless.

For goodness sake!  How could I be so blind?  There was a history; there were triggers evident; this had not come out of nowhere: I had post-natal depression after Eilidh was born and her diagnosis with SMA was a huge blow and a life changing event.  Why didn’t I see it coming?  I could have stopped the downward spiral…  I could have stopped it from getting worse.

Amazingly I actually thought I was coping with my life rather well: a working mum of 2, living an unfamiliar life with a disabled child and managing somehow to make it wonderful. How naive of me!   I realise now that it was more of an “I’m OK. I’m doing a really good job of pretending that I’m ok, so please don’t interrupt my performance.”

And then one morning last week, I woke up and realised that it wasn’t a bad dream, that the symptoms were real and that my life – real, raw and laid open in front of me – was hurting. I couldn’t bare it any longer; it was too much and I broke down.  My tears fell and my heart ripped open once more.  I thought that I had beaten you – my adversary, my depression – when in fact you stand beside me, a symbiosis: you are here.


A curly haired, sophisticated country girl with a taste for exquisite gin, Sheonad is a medic, a mum, and a dab hand at photography, knitting baby hats and sparkly leg warmers.  She lives in Scotland with two crazy beautiful girls and a very sensible, loving husband.  She is currently living an unfamiliar life with a disabled child who has Spinal Muscular Atrophy and managing somehow to make it wonderful, despite wanting to wake up and realise it was all a bad dream.  She doesn’t hide from the truth so take her straight without ice, and knock back a glass of the good stuff.

This post was originally published HERE and used with permission.  Part two of this post appears HERE.


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