Category Archives: Emotions

Picking Up The Pieces

The unexpected bereavement of a sibling is quite honestly the toughest trial I have ever been through.

How can I equate his incredible vibrancy with the gently quiet procession from his beautiful funeral ceremony, through the woods  and down to his final resting place amongst the trees?

His final journey took fifteen minutes, his coffin carried in front of us. My son held fast to my arm as I stumbled and slipped. Not once did he let me fall. I was near the front, inhaling the scent of sage and comforted by the gentle chanting, leading us down and down, deeper into the wood.

And then. A final goodbye. How to describe the lowering of a coffin containing someone who had so, so much more to give the world? I can’t.

And now we are back in real life, real pressures and deadlines. Moving on with life feels like an utter betrayal. Each day that passes is one more day he did not live. We move further and further away from the day we were all alive, together.

Cleaning the house seems trivial, yet I wander around with a duster. I rearrange ornaments. I light candles.

I’m back in work and the simplicity of it soothes me. Yes, I can do this and yes, I can do that. I can begin a task and end it, tying it up neatly. I can reply to emails. I can print off important information. Food is bought, consumed and reordered. I meet with friends and worry that my eyes frighten them, as they are full of pain and incomprehension.

I look at the chair he sat on in my kitchen. The path he walked up. The place I had my last hug with him, if only I had known.

I look at the plants on my kitchen windowsill and know that he saw them too. I turn the candle he gave me for my birthday, two weeks before his death, in my hands and cannot, just cannot believe this was the last gift he ever gave me. It’s so … solid … and he is not. It’s so real, earthly.

Grief is a curious creature and we all approach it differently. Part of me is energised, wanting to make the most of life, to do what he now cannot. The other part of me wants to curl up and cry. I’m caught between these two forces.

Right now, as long as I can keep running my house, keep on working and keep on studying, I will be ok. He would not expect anything less from me. But the underlying sadness bubbles away, boiling up and spilling over.

At the moment, it is quite literally one foot in front of the other.

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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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