World MS Day 2017 #LifeWithMS

Last month I published It’s Been Three Months. Last month, after hitting publish on that bad boy, I made a conscious decision to stop with the monthly updates.

I stopped, I took a step back and I looked at what I was doing, at what I was writing. I really looked at it. I was giving a bunch of strangers on the Internet a full-on, completely unfiltered account of what is arguably one of the most painful experiences I have ever and will ever go through. Was I even okay with that?

I’ve read many, many blog posts on losing a loved one – both before and after my mother passed away – and I know that this kind of writing does help. Knowing that there’s somebody out there, a real person, who’s already been through what you’ve gone through, who knows exactly what it’s like – it helps. A lot.

But it got to the point where it felt almost as if I was giving monthly pregnancy or baby updates, except my pregnancy was grief and baby was death. That is an absolutely absurd sentence but I don’t think there’s a better way of describing it.

Writing about grief ‘on demand‘ is hard. Conjuring up all of the thoughts and feelings that have plagued you for the last however many weeks and somehow forming them into words is really, really hard. And it’s draining. It’s so bloody draining.

So after my last little moan about the unfairness of life and death, I decided that it’d be the last. At least for the foreseeable future. If I ever felt the urge to write about it, I would, but if not then I wouldn’t. Simple.

And here we are, one month later with a “my grief has been alive for four months post.

This is different, though. See, not only is it just over four months since my mother passed away, but today, May 31st 2017, is World MS Day.

World MS Day is ‘celebrated’ on the last Wednesday of May every single year and there are currently 49 countries who ‘officially’ take part. It’s one single day that brings the worldwide MS community together with one common goal – to raise awareness.

If you Google “What is MS?” you’ll have your pick of descriptions and explanations, many of them overly-scientific and complicated, almost all of them rigid and impersonal.

It’ll most likely start with “Multiple Sclerosis (MS) is a neurological disorder…” and end with “There is currently no cure but there are treatments available.

Let me give you my own, dumbed down explanation of exactly what MS is.

Multiple Sclerosis (MS) is a neurological disorder. Multiple Sclerosis (MS) is a #%!@. Multiple Sclerosis (MS) took my mother away from me.

The thing about MS is that it affects different people in different ways. Some people will live a long and relatively healthy life with MS. Some won’t.

My mother was diagnosed when I was about 4 years old. From what I remember, it hardly affected her for the first few years. I mean, it obviously must have in some way or another, but it wasn’t blatant enough for me to notice.

I was about 10 or 11 when it started to become obvious that she wasn’t healthy like the other mothers at school.

First, she was using a cane. Then it progressed to crutches.

She had to come to my Year 7 and 8 cello recitals in a wheelchair. The school had to let us park our cars in the teachers’ car park so we could use the back door with the ramp to get the chair in and out.

She wasn’t well enough to come to my Year 9 cello recital.

Eventually, it got to the point where she was totally bedbound. She couldn’t eat. She couldn’t drink. Sometimes she wouldn’t remember my name, or she couldn’t say it. She couldn’t talk anymore, communicating only by blinking and laughing. Then the laughing stopped. Then the blinking on demand stopped. By the end of her life there was very, very little she could do.

Her body was there, and her mind was there, but she was unable to get either of them to work for her, to do as she wanted.

Long story short, watching someone as strong as she was suffering from something as insidious as MS is not nice. It’s horrible.

The thing about MS is that, more often than not, it’s a long-term thing. Like, a really long-term thing.

My mother used to absolutely hate it when people gave her pitiful looks when they found out she had MS, when they saw her in her chair or saw her struggling to pick something up.

It’s not a death sentence,” she’d say. Yet people would still cover their mouths in shock and utter “I’m so sorry” when they initially found out.

But, like my mother used to say, MS is not a death sentence. Neither is it something you can just bounce back from.

It’s not like many other diseases and some forms of cancer. You can’t beat it. You can try and live alongside it, but you can’t beat it.

It just becomes something you live with.

And because of that, it becomes the norm. For you and for others around you.

It’s a bizarre situation to find yourself in. You’re the girl with the ill parent, but at the same time you’re not.

It used to annoy me an unimaginable amount when people – mostly teachers at school – would pull me aside with their serious faces and say “How’s Mam doing?”

Fine” was always my go-to answer.

You can’t go wrong with “fine”.

She was never “fine”, but the real answer wouldn’t have been appropriate.

It annoyed me that people asked that question – asked how she was doing – when if they knew anything about MS, they would know that she was not okay. She would never be okay again, so what exactly did they expect?

It annoyed me, even more, when people didn’t ask.

When friends would hear she was in the hospital again but would just awkwardly avoid the subject should it come up in conversation.

I think, in a lot of cases, the general consensus was that we were used to it by now. My mother was used to being hospitalised – myself and my family were used to her being there – so there was no need to ask after any of us, really. We were used to it.

But you can never get used to something like that.

No matter how many years, how many repeat visits are made, you will never get used to having the person you love more than anyone else in the world get taken into hospital, not knowing if she would come out again.

Similarly, a little while after she passed away, I was talking to somebody at work and they asked whether she’d been ill. I said that she’d been diagnosed with MS when I was 4, so had technically been ill for 20 years.

Their response?

Oh, so you had plenty of time to prepare then?


No, no, no.

It doesn’t work like that.

You can never have enough time to prepare for something like that, and I think even now, four months after her death, I’m expected to be more okay with it than if she’d passed away suddenly, been hit by a car or eaten by a wild lion or something.

For as long as I can remember I have lived with MS. I have watched my mother struggle, I have watched her fight, and I eventually watched her fight end. But throughout it all, I was blessed. I was blessed to have been able to witness her strength, her tenacity, and her bravery.

I am blessed to forever be part of the MS community.

Just because she’s gone, it doesn’t mean that #LifeWithMS has ended.

MS will always be a part of my life. 

In memory of my mother, I will be running the Cardiff Half Marathon in October.

I hate running. Like, with a passion. My level of hatred towards running is extreme.

I’m not one to ask (or beg) for money from strangers, but should anyone wish to sponsor me to go through Hell, you can visit my JustGiving page here.