Real Life

One Day: I found out my baby sister had an incurable disease

As part of our One Day series, we speak to a variety women about pivotal days that changed their lives. In this, we hear from Emily, about the day she found out her 21-year-old sister had a life changing illness.

By Ellie Hooper
#OneDay Woman's Weekly NZ
“My younger sister was lucky enough to gain a scholarship to a university in Thailand in March 2011. I was wildly envious and also extremely sad at the same time. Here she was my baby sister and my best-friend - off on her own without me for the first time. Truth be-told even at 21 with our 18 month age gap, she was always so much more of an adult than I could ever hope to be.
November rolled around only 8 months after she had left, exams had just finished and I was relieved that the pressure of study was off for another 4 months. I went to bed content with this knowledge - only to be woken at 5am with a text message from my Dad.
“Your sister is in hospital,” it read. I saw the message half asleep and thought “must be food poisoning” but something nagged me to call anyway.
“Why are you awake?” asked my Father – probably assuming I had been out partying all night.
The words that he said next stopped my heart.
“Your sister has had a seizure”
I began rambling off all sorts of questions, desperate to get more information from him that he just didn't have to give.
My dad, it turns out, is the worst person to speak to in a moment of crisis because he acts like it’s just any other ordinary day, not one when his young daughter's health hangs in the balance.
I hung up on him and decided to try her phone instead.
She answered, to my relief, but the moment I ask her if she’s okay, she breaks down in tears. My sister is tough and rarely tearful, so to hear her like this was even harder.
I could hear the terror in her voice as she told me the doctors are taking CAT scans and will let her know the outcome of them. I stayed up all night worrying about her. Then I got a call.
“The doctors think I have Multiple Sclerosis….” she says breathlessly.
My sister, with MS? She's too young, I thought. There's no way. At 21, she seemed invincible – not someone who would be suffering with a serious disease. As later research would reveal however, MS most commonly affects women from the ages of 19 – 35.
Emily's sister was admitted to hospital after a seizure
It took every single ounce of me not to pack my bags and fly over to be with her. I felt sick to the stomach, like I was living in a nightmare. She was so young and healthy - how could this happen so fast? Looking back however, there were a lot of signs. Symptoms she would complain about that we all brushed off as nothing.
My sister is now 26 – she takes medication every single day to prevent her seizures and the other symptoms she has. Looking at her you wouldn’t have a clue. But she fights a struggle every single day. She wakes up tired, has no energy and is now living with the knowledge that her lifespan has been cut by 10 years or more. She has made me appreciate how strong someone must be to live with the condition and how common it is.
I feel sad knowing I need to make the most of my time with her, that having kids for her will be a struggle, and that sometimes simple tasks can be extremely draining for her. But she has also made the most of what she has. She’s taken the opportunity to travel as much as she can with her dream job, and do the best she can with the time she has.”
If you’d like your story to be included in our #OneDay series, drop us a line at hellowomensweekly@bauermedia.co.nz.