Category Archives: Emotions

Apr 20 2021
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Emotions

Endings and Beginnings

The last 20 months have been the hardest and most painful in my life.

Losing first my brother then my mum within 18 months, and with a global pandemic rearing its ugly head in between has been challenging on every single level. At times it felt as if my entire world had brutally shifted on its axis.

Life changed beyond all recognition. I made the decision to come off all my MS symptom medication (I took advice from my wonderful neurologist, but decided to go cold turkey – I was in such an enormous amount of pain, what was a little more?)

Just as I was thinking about reconnecting with the world last March, it started to shut down. It seemed cruel and ironically similar to the first years of living with MS; an inaccessible world, yet this time everyone was going through the same emotions and fears, shut at home with no idea of when we could all be together again and live life as it was meant to be lived.

We all felt disconnected and yet in ways more connected than ever. My son moved back home for six months, continuing his university studies and starting work for the NHS. We bonded in a whole new way, living as two adults in a small cottage, keeping each other buoyed up as the pandemic played out. We adapted, shared our frustrations, found new ways to get through each day.

And that’s what life came down to in the end, putting one foot in front of the other, and if we made it to the end of the day having done nothing else than get through it, that was an accomplishment in itself. We grew and learned together and looking back on it, we have come through it stronger as our little team of two.

There is no easy way to deal with grief, but taking joy in small moments helps – snowdrops blossoming, an unexpected gift dropping through the letterbox, sitting outside with a coffee watching the clouds pass.

There are tendrils of new beginnings; picking up work and studies again, reconnecting with family and friends on a deeper level, the start of a new relationship.

Right now, I am still in the each day at a time stage, but as each day passes, it gets a little easier.

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Jan 05 2020
6 Comments
Emotions

20/20 Vision

No one was more relieved than me to see the back of 2019.

I had a meal at a restaurant with my close, shattered family on New Year’s Eve, got home, tidied the house and went to bed, missing the fireworks, the ‘auld lang syne’ and best wishes for the year ahead. I slept though it all.

It was a truly dreadful year in so many ways and I can only hope that this year will bring some semblance of joy.

I miss my brother with an indescribable pain and I don’t think I will ever be able to put those feelings into words. This year would be his 50th birthday. Yet, and yet, we must take him with us and move forward.

It is not about forgetting him and his incredible legacy, it is about taking all that he learned and taking that, and him, with us. He was a remarkably charismatic and inspirational person, someone you felt connected to as soon as you met him, and he left no one out – he was a friend to everyone, something I could learn from. His vibrancy was utterly infectious.

How can we bring his legacy into what we want to achieve this year? It won’t be easy, but when I last saw him, we spoke about my PhD, the conferences I’d taken part in across Europe. I encouraged him to start the blog he’d always talked about.

After falling apart, I would like to think my brother would encourage us to fall together. Life is short. With that in mind, I have picked up my PhD. I have apologised to friends I’ve let slip. I’ve been hibernating, in absolute grief and pain.

My brother had searched the world for answers, found many, implemented most and carved out a good life, all the while looking after so many other people.

To describe his loss is almost impossible to put into words, but we have to.

Dec 01 2019
12 Comments
Emotions

If you can’t talk, cry

One of the most important conversations I had with my brother was shortly before he died.

We spoke about our shared childhood, our grief and our plans to make our futures (and those of our children) much, much better. I had been though a bad time that summer and he implicitly understood.

He didn’t make it.

At the time of his death, I was on a huge dose of medicine to cope with my MS symptoms, mostly nerve pain. After he died, as the pain was so great, I decided to come off all my MS symptom medications; after all, what did it matter when grief was consuming me. I talked to my fabulous neurologist and we devised a tapering plan over six months.

I did it in two weeks – I do not recommend it – but my pain was so massive I didn’t feel it mattered, I would cope.

I went through the detox, I coped and friends rallied round, as they still do, insomnia being one of the lingering effects to deal with.

Stopping medication – I was on 600mg Pregabalin daily, as well as two other meds – made me cry. I cried over a McDonald’s breakfast. I cried about a Wateraid advert. I cried over everything.

But mostly, I cried about my brother.

He was incredible, always wanting to help those least able to shout in our society. He cared passionately about the underdog and championed their cause. He made so many friends, I lose track. Anyone at his funeral would bear witness to this.

We did many things over the years – he teased me, he goaded me, he laughed. But he always, always had my back. He was so proud I was taking my PhD and looked forward to my graduation as he knew how hard I had fought to get this far. We talked about him starting a blog to share his experiences of helping others.

And then he died.

The pain is indescribable. He was so vibrant, so alive. So here.

And now he is not.

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Oct 15 2019
6 Comments
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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Oct 12 2019
12 Comments
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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