Whenever I’ve been asked to describe my life being the younger sibling to someone with a disability, I always use the same analogy: It’s like walking into a film that’s halfway through.
The reason I use this analogy is because I have only been around following my sister’s illness. My images of life before I was born have been formed from hearing different accounts at the time by family members and friends.
My name is Steven and my sister is Rhianna. Rhianna is seven years older than me and in 1990, at the age of five (before I was born), Rhianna was diagnosed with an aggressive brain tumour which was moving onto Rhianna’s spine.
Rhianna made a miracle recovery and is now 40, however, the effects of the tumour, along with the intense treatment have left Rhianna with several disabilities that have affected, and will affect Rhianna for her entire life.
As I grew up, I knew Rhianna was slightly different, mainly because of the amount of hospital appointments Rhianna had. But other than these I didn’t really see my life as a brother different to anyone else. It was hard sometimes because Rhianna did have mood swings and get quite emotional, but these tiffs were just the same as any other siblings.
Our mum, Linda, has been Rhianna’s constant carer since Rhianna’s diagnosis and post-treatment, but my mum has always made sure to make time for each of us. It’s probably having Rhianna as my sister that’s helped me understand the importance of being patient and selfless.
My dad, Tim, was around as well, but he went out to work, so mum was the main carer. But after my mum and dad separated (they’re still close friends) during my teens, in the mid-2000s, I took on more of a carer role for Rhianna, along with my mum.
I can’t deny that it wasn’t (and isn’t) hard because it is. However, I love my family, especially Rhianna, very much, so I never felt put upon or frustrated by the situation. It was something I wanted to do, to help Rhianna as much as I could, and help make our lives slightly easier. That sort of leads me to our lives today.
Over the last two decades Rhianna’s physical health has decreased significantly, most notably following the 2020 pandemic because Rhianna was classified as high-risk, leaving Rhianna (and my mum) near enough housebound.
That’s why improving Rhianna’s physical health is the toughest challenge we face today. It’s made harder because Rhianna gets tired very quickly and Rhianna’s muscles are very weak. But me and my mum are trying our best to grow Rhianna’s physical strength as much as we can.
It was also the uncertainty of the 2020 pandemic that led me to become joint power of attorney for Rhianna, meaning I had more control over Rhianna’s wellbeing and affairs, which is something I’ve done quite a lot since 2020.
So, although my life as a younger brother hasn’t been (and isn’t) what many would typically expect, I feel incredibly proud and lucky to have an older sister like Rhianna. Rhianna is the kindest and strongest person I know.
No matter how many blood tests has had, tablets Rhianna has needed to take or operations Rhianna has undergone, Rhianna has never complained. Rhianna takes everything in her stride and while we do occasionally argue, I couldn’t wish for a more caring and loving sister than Rhianna.
And that’s my advice to anybody who has a sibling with a disability. The strength it takes for our siblings to wake up everyday and live their best lives, with a positive attitude, outweighs any concerns or troubles we face.
Never forget how lucky you are to have a brother or sister and while it may be tough sometimes, it just makes our bond as siblings stronger.
Thank you reading our story and if you’d like to say hello to me or Rhianna, feel free to connect and message me on LinkedIn – Steven R. Jackson | LinkedIn.
