Hate is such a strong word.
I don’t think it should be bandied around lightly but I can say without a millisecond’s hesitation that hate Multiple Sclerosis.
The filthy scourge has been a spectre in my life for twice as long as it wasn’t and now I don’t even remember what a life without my darling Mama slowly falling prey to its insidious claws feels like.
These days, it’s something that we rationally deal with. We know now that Mum is permanently wheelchair bound, and we try to make life as simple as possible because we also know that simple daily tasks can be time consuming, arduous and exhausting when you can’t stand or walk.
Day to day we understand the struggles, the tiredness and the unreliable coordination and Mum handles it all with grace and style and a wonderful sense of humour.
But some days are worse than others. Some days there are falls, or the lack of coordination results in injury.
My mother’s independence is impressive. Sometimes my mother’s independence frightens me. because falling or hurting yourself alone is scary. And it’s not a rarity.
People with MS struggle with incontinence and keeping your dignity in tact not easy. Keeping your humour in tact is imperative, because some days it’s all you have.
I fucking hate Multiple Sclerosis.
I reckon the only person who hates it more than I do is my Mama.
MS has stolen many things from my Mama. She loved long walks and she was a fantastic dancer. Not ballroom, lounge room. A house party was her Broadway and I used to love watching her boogie as a child.
MS has not been able to touch the fact that my mum is a sensational Nana but sometimes my children get curious about why Nana is not like other Nanas.
“What’s wrong with your legs, Nana?”
“Why can’t you walk, Nana?”
They are tricky questions to answer, so we tend to say that Nana has a disease that stops her legs from working.
MS Australia and the Australian and New Zealand Association of Neurologists (ANZAN) – is launching an Australian-first educational comic designed to explain complex medical information about MS in a format that children will understand and engage with.
When I was asked to take a peek at this book I thought it was a fantastic opportunity to explain in greater depth what’s wrong with Nana.
We schnuggled up in bed with the comic and I let them know what it was about and that we were going to talk more about why Nana can’t walk. We were ready.
Kiks is at the stage of ‘why,why,why?” when we read and D Man was really confused about who the goodies and baddies were, which is kind of the point.
MS is when the goodies, your immune system, get confused and attack your myelin sheath which act like the barriers on the side of the nerve highway, thereby messing up the message going to your body.
Ultimately I think this comic was a tad advanced for my gang, but we’ll read it now and we’ll reread it regulary over the years so they’ll grow up kind of getting it, until they totally get it.
MS sucks, but it’s not a complete mystery. It’s just an arsehole.
With 23,000 people in Australia suffering from Multiple Sclerosis, and 1 in 20 people being affected by it, I’m sure that many people could read this and get a greater understanding of what the hell is going on.
I knew about the disease as a kid because primary school made us do the MS Readathon. One year I kept all of the money I raised because buying lollies was more important to me than finding a cure for a disease I didn’t understand.
Because now I understand more than I would ever wish upon anyone in the world.
The Medikidz comic book series don’t just cover MS, they cover an array of illnesses to help kids understand their’s and their loved ones diagnoses, and you can find more about them on their website.
If you want to find out more about the hateful MS or donate to help find a cure, your can check out MS Australia.
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