On 3 November, close to 9pm, I received the text from my mum telling me that my younger sister Laura had passed away.
I had said my goodbyes to her on my own during that day, so I felt lucky to have been able to do that. I was also lucky to have had many supportive friends and family who helped me a lot in the following weeks. A lot of the time I would look on the internet to find advice on grieving, when I realised something – there were hardly any articles addressed to the siblings of special needs children and adults who had died, and the particular challenges that come with having and losing a special needs sibling. This article is for them.
I am one of those siblings. Laura had special needs and many conditions, her main one being that a part of her brain didn’t grow correctly, meaning she couldn’t walk or talk properly and was mentally much closer to a child than the 19-year-old she was.
As a child I didn’t really notice anything different in Laura. It was normal life for me and that was that. My mum always told me that Laura had ‘problems’, which was all I could understand as a child, and I accepted that. As I grew older though, I saw all my friends doing things with their siblings and wondered why Laura couldn’t do the same things with me. That’s when I realised that she was somehow ‘different’ to other sisters.
When I talk with friends that have special needs siblings, they often agree with me that life seems like a series of weird, endless paradoxes and contradictions. It’s a feeling you can’t really understand unless you have a sibling with disabilities, even more so if they are your only sibling – in some ways you feel like an only child, despite knowing that you’re not. Your parents are either working or looking after your sibling and so can’t spend much time with you. You feel like you’ve missed out on so many things others take for granted.
But then you feel proud you’ve experienced unique things, and you feel a constant, nagging loneliness that stays with you as well as an immense feeling of companionship, affection, pride, sometimes embarrassment, in equal measure. These feelings occur at the same time, battling each other continuously.
Since Laura’s death, I’ve realised what a unique group I was actually a part of. Recent studies have shown people like me are subject to more emotional issues, anxiety and stress than others, but also that we are also more prone to develop positive emotions such as empathy, tolerance and maturity. Growing up with someone ‘different’, I often asked myself why people cared so much about other people’s so-called differences. I could never – and still don’t – understand things like racism, discrimination and hatred towards others for their skin colour, beliefs or other attributes. Laura taught me that, and she taught me to passionately detest anything that doesn’t inspire kindness and understanding between human beings. She taught me that better than any of my university lecturers.
When she died, the paradoxes continued. Had I lost a sibling? Well yes, but not in the same way as other people. I didn’t grieve for the same things, for the ‘normal’ memories siblings experience with each other, because I simply never had those. In a way, I suppose I had already grieved for the things I feel I missed out on, and still do.
Some people say to me, ‘well you might have hated each other and fought all the time’. We might have, indeed probably would have, but they miss the point – I didn’t even get to fight with her and even that, as strange as it may seem, is a loss.
I will never see her succeed in life, comfort her when some guy has broken her heart, see her walk down the aisle at her wedding or give me a niece or nephew – but that isn’t entirely because she died, I believe I wouldn’t have seen these things if she were still here, and I was already grieved for that when Laura was alive. Loss, in all its forms, is something siblings of special needs people learn like a second language.
Instead what I will miss are her beautiful blue eyes and wide smile, her shouts in the morning when she woke up, and picking up her toys for her when she threw them on the floor – which now I think about it I believe she did it on purpose. She was the one who ruled our house, and now all that’s left inside both the house and me is an emptiness.
What got me through grieving was poetry, both reading and writing it. As a student of religion, I loved religious poems, and it was mainly Buddhist and Muslim poets that offered me the most solace. The beautiful words of Rumi and Hafez on wine, love and loss were a comfort – and as a Buddhist, the Buddhist teaching of impermanence or ‘Annica’ helped a lot too. On Christmas Day, the first I ever remember without my sister, my mum brought me a book of Zen poetry and one in particular got me through that day. It was by a Chinese Buddhist-Daoist poet known as Han-Shan and reads as follows:
“A telling analogy for life and death.
Compare the two of them to water and ice
Water draws together to become ice
And ice disperses again to become water
Whatever has died is sure to be born again
Whatever is born comes round again to dying
As ice and water do each other no harm
So, life and death the two of them are fine”
To all siblings of special needs children and adults: our life is a blessing and a curse. No one but us can understand the unique feelings that come with being a special needs sibling in the way that we can. We should embrace the paradoxes, learn from them, grieve for them, but above all be glad and proud that we had them and that we’ve become better people for it.
Know that all that we experience only makes us a more loving, understanding and forgiving person. As well this, know that we’re not alone despite what we may sometimes feel and that there are many more like us who do understand.
Be proud.
How It Feels is a recurring blog series which aims to shine a light on people’s stories, covering subjects where voices are rarely heard. If you want to get involved, please email ukblogteam@huffpost.com.