Tag Archives: grief

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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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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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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Denying the Anger of Bargaining with Depression and Acceptance?

griefI don’t know about you, but the so-called ‘5 stages of grief’ annoy me.

It’s too neat, too … sanitised and packaged.

MS is anything but.

So, you get your diagnosis (of this life-altering, incurable illness) and then you seamlessly glide from the Neurology Consultant’s office onto this Grief (for your old, pre-MS life) Conveyor Belt, at the end of which you happily reach Acceptance and proceed to remain a valuable member of society? And you have the leaflets to prove it.

Yeah, ok.

This concept was devised by Elisabeth Kubler-Ross in 1969, primarily in dealing with terminally ill people, but has since permeated everything from illness to divorce to coping with not having your smartphone to hand for 24 hours while it’s being repaired.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

In the right hands, it can be a useful tool, especially if you make clear that we can go through the stages in any direction, not necessarily in this order and we can boomerang between all of them for years. In the wrong hands, it can be yet another pressure to conform to what is deemed ‘normal’. You’ve got MS? Go through this and you’ll accept it. You’ve not accepted it? What’s wrong with you?

In my own case, I never once denied I could have MS. In fact, with a family history of it, it was my first thought when my body failed spectacularly, despite the initial diagnosis of a stroke. Anger? Self-pity, yes. In buckets. I’d like to add this to the ‘stages’.

Bargaining? Never entered my mind. I’m confused to what it actually means. If I do this, I get that result?

Depression is almost a given for any life-changing illness, so I think that goes without saying.

Acceptance? It comes and goes, probably in tandem for each relapse. Just as I think I’ve adjusted to MS, it throws a curveball.

There is no magical formula to coming to terms with MS. I wish there was. Just as MS is unique to us all, so are the ways we cope with it. So, resist that conveyor belt and be true to yourself. If you want to scream and shout, shut yourself away for days eating nothing but ice cream or you fancy painting the town red, do it.

Should you ever reach Acceptance? Have I ever climbed Everest?

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