I always joked about you being a bit blonde, even though your hair was as black as the night until the grey started to come through. “It’s not grey” you’d reply with gentle humour when I’d tease you as we sat over a lingering breakfast with the newspapers. “Those are strands of glitter growing from my head”
And you’d laugh, green eyes sparkling as you looked up from whatever you were reading, and the room would light up with your smile. Was it really only six months ago that was our reality?
The kitchen is a darker place now. Somehow, even on the brightest of days, neither the warmth nor light of the sun seems to penetrate our new life which is an altogether more somber affair. As I look across the table I still see your head bent and the increasing strands of glitter growing from your head.
For a fleeting moment, a smile brushes my mouth and I go to tease you, but then I remember with a sharp stab of searing pain that you are no longer You. That you cannot answer, that you do not understand, that you cannot laugh.
Silently I get up from the table and I walk round to you. Gently I lift your head and reposition it upright between the padded rests in the special wheelchair in which you now sit. I wipe away the moisture from your mouth and chin, and I say “There you are darling, that’s better, now I can see you and you can see me”
But your eyes are vacant, looking without seeing, without comprehending your surroundings, without knowing me. To look into your beautiful green eyes now is to peer into unfathomable darkness. Their sparkle is gone, though the colour remains. And for the second time in as many minutes, I feel the stabbing of my heart.
We had so many plans; I still have your notebook filled with all your ideas for our much anticipated month-long trip to Italy next summer. Your excitement explodes from the pages, it’s filled with pictures torn from travel brochures, quotations that moved you, restaurants suggested by friends, a million and one things that you wanted to do, see and hear.
Your joyful love of life is almost made real again as I hold that book.
When they told me at the hospital that you would never be able to move, communicate, or think independently again, I didn’t understand what they meant. Because all those things were what made you You, they were your very core. I asked them to tell me again, and again what that really meant because I could not imagine that you could live without them, that you would simply be gone.
No, no they told me, several times as if explaining to a small child. Your wife is, in all other ways, perfectly healthy. Looking back now, I understand why it takes so long to become a Consultant; to be able to deliver such a statement without a hint of irony must take years of RADA style teaching. It was, they explained, just that your brain no longer carried out all the functions needed to live an active and engaged life.
Your body it seems was, and remains, in robust health. Indeed, when the carers dress you in the morning in the clothes I take an age to choose for you every night, they often comment how beautiful you must have been. Your skin is soft, and still fits your body like a supple leather glove, not too tight or too saggy. I loved your body, the feel of it, the way you moved. Never one for abstinence, you ate what gave you pleasure, adored to cook us your latest recipe discovery, savouring every mouthful. You were refreshing in a sea of people always worrying about what food passed their lips. “Life is too short” you would say “to not enjoy good food and wine and the pleasure of sharing it with people you love”
How right you were. As I take another packet of indeterminate liquid mush from the cabinet and attach it to the tube that now gives you the pre-determined nourishment you require so as to not die, I am so glad that you did live life on those terms, for now, there is no pleasure for you at all. And that makes me sadder still. There are days when I don’t want to do this, I don’t want to prolong this non-living life, this limbo, that society has consigned you to.
I hope with every fibre of my being that you have no idea at all of what is actually happening, that you are not screaming silently inside yourself in a way that I cannot hear in fear and rage at it all, and most probably at my ineptness, for it was always you that cared for me. Other days I don’t want to do this for selfish reasons, because I have no life either. No life with you and no life without you.
I am in limbo too, except I can sense and feel and experience every second of this living hell. It eats away at me, it tests the love and loyalty that I have for you.
Increasingly it makes me question if this situation is the best thing for either of us, you and me just existing minute to minute, hour to hour, day to day. I crouch down beside you and take your cool, lifeless hand in mine; and I talk to you as if you can hear me still and offer me comfort. “I’m tired my darling girl, tired of all this. My heart breaks for you every single day. I’m so, so sorry, I don’t know how to keep doing this.”
Tears fall silently down my face, I’ve never spoken to you like this before, I’ve always tried to be strong for you. But, today, I can’t be and I lay my head on your lap and let the tears come.
A rare beam of sunlight slowly makes its way across the kitchen table, it’s gentle warmth touches us, and for a moment I imagine I feel you squeezing my hand in that reassuring way you always did when you just somehow knew I needed you.
I gather myself and stand up. Leaning down I kiss the top of your head and the strands of silver glitter that flow through your hair. “Thank you my love,” I say. And I clear away my solitary plate and cup, and together we start another day.
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