On December 12th this year, my sister Shona will be 40 years old. Sadly, there will be no party.
The last time I visited Shona, I snuck into her bedroom without her seeing and sat on the window sill, just out of eyesight, hoping to spend a few minutes in silence with her. I read the diary her carers keep outlining her moods and any issues and noted that she hated me more than usual today, and had been shouting out loud, to no one in particular that I was evil, and must be put to death.
Five minutes later she spotted me, and screamed at the top of her lungs at me to get out, flinging her sippy cup of coffee against the wall and kicking her legs at me until I gave in and left.
This is not the relationship I thought I would be having with my only sister.
No matter how hard I tried to catch up as a child, Shona always remained a solid 18 months older than me in spite of this we bonded over a shared love of Ambrosia creamed rice, fancy pages and erasers that smelt like strawberries.
Personality wise we were total opposites, Shona was a soft and gentle soul, happy to go along with whatever everyone else was doing and stare dreamily at the clouds on the way. I, on the other hand, had a steely determination to succeed at everything, even at that stage. I always competed with myself, as Shona had no time for my bullshit, and felt I was a little dramatic for her taste. She wanted to be a nurse, or a vet, I didn’t know what I wanted to be but whatever it was I would be the best, that was for sure.
I remember vividly the first few times I noticed that something wasn’t right. One day, when we were 14 and 15, we were out cycling our bikes when she literally fell off onto the road, for no reason. A nice man who was passing put her bike in the boot and dropped her home. Sometime later, we were out walking on one of our adventures when she suddenly sat down.
“I can’t walk”.
“Stop being stupid”, I answered, “Get up”. She didn’t get up and eventually I had to go get my Dad to carry her home.
Not long after that, her right eye suddenly, and almost overnight, turned almost inwards. From there everything happened very fast, she was taken for brain surgery in the UK after which she spent months in the National Rehabilitation Hospital.
They were trying to save her life. It was a long shot. They managed to prevent her death, but as for the life she was left with, you wouldn’t wish it on your worst enemy.
For the past 25 years, Shona’s condition has worsened and she has spent the last 6 years in full time nursing care, unable to feed, dress, clean or care for herself in any way. She is hugely troubled, hears voices, and can be violent in ways you would never think her capable.
It’s a strange situation to be in. I have lost my sibling, but was never given an opportunity to grieve. Our future together has been taken from both of us. Now, I am almost constantly consumed by guilt.
Guilt because I envy those people who lose a sibling suddenly and unexpectedly. Guilt because I envy the pure memories they get to cherish while I struggle with the loss of someone who is, physically anyway, still here. I am jealous of those who don’t have to watch a loved one slowly deteriorate whilst fighting a battle they will never win.
Guilt because I dread going to see her. It takes every ounce of emotion I have to still see glimpses of that wicked sense of humour overshadowed by her illness. Guilt because I spend all my time with her thinking about how quickly I can leave without feeling too guilty about leaving.
Guilt because I remember all those fights we had as kids, and the times I pushed or hit her, wondering if I, in any way, contributed to her illness. For many years I blamed myself.
Guilt for surviving. Guilt that the illness chose her and not me. Guilt whilst thinking about how much better a mother, sister, daughter or friend she might have made than me. Guilt when I take my own life for granted.
Guilt because every time she takes a turn for the worse, I wish that she would stop fighting and go, because her life is misery, and it’s hard for me to watch.
I have lost the sister I thought I would share my life with. We will never laugh, cry and dance together, share late night phone calls, Friday night cocktails or girly shopping weekends. I have lost potential nieces and nephews, cousins for my children. I will never get to steal her favourite top, tell her my cooking is better than hers, make her wear a godawful maid of honour dress that she would never forgive me for.
In 2016, I launched Shona, The Survival Kit for Girls, a non -profit organisation aimed at helping young Irishwomen who are struggling, and hopefully helping them to live their best lives.
Once or twice a week I get an email, or a phone call from someone who addresses me as Shona. I like it, it makes me feel like we are sharing an experience, that people know who she is, and that her life has not been wasted.
She will never know. But I will, and hopefully I can appreciate it enough for both of us.
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