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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Oct 03 2019
4 Comments
Emotions

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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Sep 10 2019
18 Comments
Emotions

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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Aug 01 2019
10 Comments
The Teenager

Farewell To The Teenager, You’ve Been Amazing

If-I-could-I-would-give-you-the-world

I started this blog back in the Bad Old Dark Days of 2012.

Just diagnosed with MS after long, agonising months of full-blown symptoms, The Teenager was also at the start of High School.

We were yet to face the full force of my eventual legal employment battle, although the bullying I was enduring at work was horrific.

I had to squeeze in my first Alemtuzumab treatment when The Teenager was on holiday with his father, and I had less than 48 hours to recover and appear ‘mum’ before he came home. It wasn’t ideal, but we made it work. Three times in total.

Looking back, we both had to grow up pretty quickly, The Teenager a lot more so than me. I was/am a single divorced parent, shouldering the vast majority of care. He was vulnerable, unsure of his place in the world. The once active parent he was accustomed to was a distant memory as I struggled with ever-worsening mobility.

And that’s the thing – this blog has always been about both of us; MS does not exist in a vacuum – it touches everyone around you. We argued, fell out, sulked, argued some more, but ultimately, we always met somewhere in the middle, after discussion, time and a lot of readjustment. I was adamant that his childhood would be as minimally disturbed as possible. A big ask.

Readers who have followed our story from the beginning will remember the School Uniform Wars, his very short-lived job as a newspaper boy, the endless rugby mud, his tantrums and the moments of blinding self-awareness. Our cottage, our cats and the low ceilings (he’s now well over six foot tall) have all featured, and will hopefully continue to do so.

He came with me to my first march against austerity, although a little embarrassed. He’s been to award ceremonies for our blog in London and visited Amsterdam twice to take part in a hack with MS firmly at it’s centre. He took his Google Maps and aged 15, worked his way around the Dutch city so well that he guided a bunch of mates a couple of years later for a mini-break.

I could go on, but I won’t as he would be modest. He knows he’s amazing and he knows that you guys know it too. We sometimes posted queries, asking for advice and you answered quickly and with a lot of common sense, especially when he was going through a really hard time a couple of years back.

So here we are. August. The Boss’s birthday, then mine, then Christopher’s. It will be odd not to refer to The Teenager. Someone wisely suggested calling him the Ex-Teenager and I quite like that.

On the cusp of 20, the only thing I can do is thank him for being so open to new experiences, so willing to go through difficult times and come out the other end wiser, more confident and a son I am so very, very proud of.

Jun 29 2019
8 Comments
Daily Life

Honestly? MS, Again and Again and Again

Just when I think I’m doing a pretty decent job of faking it with MS, I discover that no matter how hard I try, it will always make its presence known.

When I say ‘faking it’, I don’t mean denying I have this illness, it just means that I try to hide stuff from the people who mean the most to me.

Yesterday, this hit home in an unexpected way; I had been at work and once back home, I put the fan on to cool down the house.

When The Teenager came home, he found me semi-relaxed, reading a book and being blasted by a formidable Arctic chill. So what followed was surprising:

‘You ok?’

‘I’m great! Fab fan! You ok?’

‘God, it’s depressing.’

Hmm, did he mean something had happened when he was out? Or was it the state of the world? Politics? No.

‘I just feel so sad that you have to sit in front of that thing to feel ok. It’s depressing.’

I tried to explain it was all good, I felt fine, I was just dealing with a symptom.

‘Still crap.’

I understand where he’s coming from – he’s had a fair old journey as the child of a single parent with MS which hit right when he started high school. He knows my MS foibles inside-out, but no matter how much he’s witnessed over the years, I’ve never relied on him as I wanted him to blossom and grow despite MS. The same wish I have for myself, I guess.

Of course, he will always have this hanging over him, as I am his main parent. He reads too much on the internet and stores it up until it explodes in fear and anxiety. I will always provide a safe harbour for him to come back to when he needs to.

I guess I am the Great Pretender. I refuse most offers of help, I push myself to the point of exhaustion and in some ways, I gain a lot of satisfaction by doing that and stuff the consequences. Yet within myself, I have somewhat calibrated MS to suit me; I go to work when I’m at my best MS-wise, I catch up on paperwork when I know I can engage my brain, I write randomly, whenever I can and I now accept that when I can’t, I can’t. No matter how frustrating.

When that happens, I’m stuck on the sofa, or in bed. Lying flat in a cool bed sometimes brings more relief than any meds. I realise my life has shrunk, but in a bizarre way it’s also grown. Without MS, I could still be in a dead-end job with a dead-end partner, cycling through life with no real care or direction. Life has been honed down towards what is most important, and that’s been a huge learning curve. I’ve discarded all thoughts of what I should be doing, could be doing, ought to be doing. I now choose.

So yes, MS happened. It’s not the best, it never will be, but I will try for as long as I can to continue to be the best parent I can, above everything. If I could only reassure The Teenager more, I would be happy forever.

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