Category Archives: Emotions

The Trouble Is, You Think You Have Time …

… and the truth is, we don’t.

I used to wonder when the last time would be that I’d push my son’s pram, or bathe him, or was allowed into his bedroom without a polite knock first.

The thing, is we don’t know until we look back and realise it was the last time. We just assume everything carries on as before, until it doesn’t.

Which is normal when you’re bringing up a child. We may look back and feel a bit teary, but we look forward to the next stage, the next achievement. There will always be something new to celebrate.

It’s the same with our wider family network: me and my three siblings have all been getting on with our lives, coming together, celebrating milestones and knowing that whatever happened, we were all parents, bringing up our children.

I caught up with my brother in July when he was on a flying visit before heading back home. A glorious, joyous conversation filled with so many plans for the future – my University studies, his desire to start a blog and network to share everything he had learned over the years; his spiritualism, meditation and mindfulness. The classes he taught and had brought kindness and understanding to so many people. We drank a lot of coffee, laughed until I cried and I was secure in the knowledge that he was happy and fulfilled.

He was beaming from ear to ear and I can confidently say I have never seen him so happy. We had a long hug before he left and had made plans to meet again very soon.

He died a month later.

Despite his incredible travels, learning and teachings, he finally found peace at home, alone.

So far, I have avoided the pain of his passing. Every time he comes in to my mind, which is almost every minute of every day, I push it away. It is far too raw and painful. However, these last few days have been harsh. I can no longer avoid his passing. I wake up numerous times each night and his absence hits me again and again and again, like a hammer smashing my heart.

He will never visit me again. He will never again do his crazy dance. He will never fill my house with his presence. I will never hear his gentle voice drawing me into conversation.

The last time I saw him, after our hug, he hoisted his ubiquitous backpack onto his shoulder, smiled broadly and headed off down my path.

If. If.If.

If I had only known.

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Autumn Equinox

In September last year, I found myself in a field somewhere in England.

Up one lane, down another until I spotted a fluttering Buddhist flag and was surrounded by people in camper-vans and tents, all celebrating the Autumn Equinox.

I’d been invited by my brother, so I duly brought a blanket and some food to share, eager to catch up with him, his partner and his toddler. He also has two other children, one in his 20’s and one in her 30’s.

I helped prepare the communal meal, slicing baguettes and stuffing with cloves of garlic, while someone else peeled potatoes and carrots. All the while, we were catching up, laughing and joking, the way siblings seem to do.

I joined a workshop and banged some drums for an hour which was surprisingly therapeutic. My brother, as always, did his crazy dance around us. He was surrounded by a multitude of friends.

Before I left (I just can’t do camping), we all stood in a huge circle and placed something we had found from the forest in a pile in the middle. Then, we went round each person, asking how they felt. I messed up, but that’s fine. I think I said I was a cloud.

The abiding memory is of my brother wishing for a beautiful year ahead for everyone. We lit the fire of everything we had laid down and took stock, sitting back, chatting and laughing.

My brother was happy and vibrant. We promised each other that next year, I would bring a tent and stay.

Except I didn’t.

The Autumn Equinox this year was September 23 and my beautiful brother had been dead for over four weeks.

There is no word to describe the death of a sibling and it’s not something I ever thought about. But in all honesty, as one of four siblings, I felt as if one quarter of me had been sliced off and laid in his grave along with his beautiful wicker coffin.

His celebration was beautiful. After the ceremony, we walked behind his coffin, through woodland, to his grave and laid him to rest.

And now we pick up the pieces. There are no set stages of grief. Right now, I only feel a sense of horror that my once such alive brother is no longer with us.

It defies logic.

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What Is Grief?

I’ve written about the MS Grieving Process in my blog; our health is compromised, our lives change and we need the chance to mourn.

It’s a terrible, horrendous time more often than not, especially as we’re usually fairly young when we’re diagnosed.

I thought I knew how grief felt – because of MS, I had already lost my dad at a very young age to a rapidly evolving form of MS back in the 1970’s and then my partner and my job disappeared when I was diagnosed.

Now I know, I knew nothing about grief

The grief of losing a sibling is beyond anything I have ever experienced.

My brother died two weeks ago and we are heartbroken.

In my head, I race through memories, his quirks and his mannerisms. I can conjure him up in the blink of an eye. I can hear him speak. He was so utterly vibrant, it’s difficult to imagine him inanimate.

We spent 46 years together. And now, he is gone. The realisation that he no longer walks on this earth is bizarre.

Grief is cruel, breathtaking and vicious.

We are all living in a new world now, one in which my brother does not exist. And that blows my mind. His Celebration is two weeks away and he will be buried in a woodland near to where he found true happiness.

I last saw him in July – he’d driven up from Down South and we had a fantastic catch up. He was full of plans for the future, asking lots of questions about starting a blog where he could share everything he had discovered over the years. He had helped so many people through his quest for enlightenment.

I’m in the shock stage. I know he is gone, but am finding it hard to accept.

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Public Speaking and Other Horror Stories

I am not, by any stretch of the imagination, a public speaker.

It’s something that has always terrified me.

I trace this back to moving from Scotland to Wales when I was 14, and asked to talk to my English class in a new school about some topic I was passionate about. The girl before me spoke about The Body Shop and smashed it.

I mumbled and stuttered through an excruciating two minutes and swiftly sat back down again, cheeks flaming.

Since that time, I vowed never, ever to speak to an audience again.

Until MS.

Why did MS give me back a voice I lost?

For one, accent doesn’t matter. Second, a slick speaker is all well and good, but sometimes it is just as important to hear from someone like me, an average person , saying it as it is, mumbling and pauses accepted.

During my work in raising awareness about MS, I have been fortunate enough to speak at MS conferences in Hungary, Greece and Denmark. When I say speak, I mean talking with passion to audiences, voice wavering. I always keep in mind that if I can survive a two-hour lumbar puncture by a Doctor who has never done one before on a live patient, I can survive anything (true story). 

And that’s the thing about passion – at my last conference, we were talking about Patient Focused Priorities, something I’m, well, passionate about. We had all chatted beforehand, ran through some scenarios, but to be live (it was live-streamed), to be there, at the conference, for that twenty minutes, I wanted to give my all.

It could have gone either way. I blow-dried my hair (taming the unruly curls), I dressed in smart black trousers and a grey top and made my way to the conference room. I was led to a bank of dials and switches and mic’d up (bit embarrassing, muffin top). Then I sat down, heart pounding.

It seemed a good idea weeks before, so we agreed, as I was in Scandinavia, I would explain my background. In Norwegian. A language I used to speak fairly fluently until MS blasted me with a massive relapse of the speech part of my brain, which I’ve been told is quite unusual.

However, me and my wonderful Norwegian host began…

Reader, it was amazing. My Norwegian was awful (to be expected) but our rapport carried us through,

Looking back, I think it is the same for all of the conferences I have spoken at. I’m not coached, tutored or subjected to a round of interviews: I’m invited because I am me, living with MS.

I would like to think that a genuine speech about someone living with MS is more effective than any PowerPoint slideshow.

I may mumble, stumble and fumble, but I get my point across.

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Has MS Changed Me? Hell, yeah …

I’ve been thinking.

MS has almost taken me back to my wild teenage years, when absolutely nothing held any fear.

Take a train to Austria after your last A level? Yup.

I travelled the world, got into numerous scrapes, came out alive and picked myself up. Crossing a river in The Gambia in a sinking ship springs to mind.

Then, when I was 26, I had The Teenager and life naturally took on a more sedate pace.

Which continued for the next 18 odd years.

I settled into a nursery/school/rugby/the many other activities routine. I was in a job I loved, working with a wonderful person but it had no future. However, it was close to his nursery and school and that was all that mattered.

Then, MS. An explosion, obliterating life as we both knew it. I remember a conversation with The Teenager, as he stood on the threshold of High School, when we discussed how we should approach the MS imposter. By this time, I had had my first treatment of Lemtrada and was back on my feet, just.

We decided we should throw ourselves into campaigning and so it was that we attended our first march, against austerity and benefit cuts (‘I’m Not a Scrounger, I Have MS’ placard) back in 2011. The Teenager came with me and was delighted to hear the speakers swearing. He then came with me to awards ceremonies, meetings and discussions. He was interviewed, photographed and involved in all the media projects.

I had changed jobs through this time and was subsequently sacked from it after my diagnosis. The Teenager went through the whole legal case with me, alongside navigating the high school system. But we came back stronger. I got a new job, enrolled in a Master’s and he knuckled down to studying.

Life wasn’t at all easy – I had to sleep a lot, which I think is frightening for an only child with one main parent. I know it still scares him.

Every single event or speech or article I take part in is a blast into the unknown. Public speaking terrifies me. Seriously. Yet I keep putting myself out there and campaigning for disabled rights and acceptance. Most recently, I have been shortlisted for a Wales Online Digital Award and am due to speak live at a conference in Copenhagen at the end of the month. Gulp.

So has MS made me more brave? Erm, yes. What is the worst that can happen when the worst has already happened? I’m still terrified of public speaking, I would like more Photoshopping, a rapid weight-loss solution and a Master Class in public speaking.

However, when I am on stage, I am … me.

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