Category Archives: Emotions

Oct 03 2019
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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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Jun 15 2019
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Emotions

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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May 03 2019
4 Comments
Emotions

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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Mar 26 2019
8 Comments
Emotions

Leave No-one Behind

Some of you may have seen my tweet about my dad yesterday.

It would have been his 76th birthday, but MS took him from us shortly after his 35th, back in 1978.

Of course, MS was vastly different back then – no DMD’s, no MRI’s, no MS nurses and no real understanding of the illness. A severely weakened immune system with no way to stop it meant that people like my dad were susceptible to normally-treatable illnesses.

Thankfully medicine has moved on in leaps and bounds over the following decades and a diagnosis of MS is no longer seen in the same way it once was.

When I was diagnosed in 2012, there was an abundance of medicines, support, online help and a plethora of organisations who reached out and helped me through the Newly-Diagnosed forest.

I count myself as immensely lucky to be living in these times. My medication held back the onslaught of the worst that MS could throw at me, and I was able to see my son through high school and into university. Unthinkable for a lot of people just a few decades earlier.

I admire the drive to cure, and the medicines which are life-altering for so many people. Yet, we must also concentrate funding efforts on living with MS. Many people with MS cannot access treatment or are ineligible for DMD’s. Money must be found to support people, and their families, who fall in to this category.

I know first-hand the utter loneliness and isolation MS can bring. The depression (rates which are a whole lot higher than for the rest of the population), the despair. We need to ensure that every single person with MS, whether they may benefit from the shiny new medicines or not, are supported and cared for.

Families too must be supported. Child-carers should never exist. Partners of people with MS must have access to support. But we know this simply does not happen. Benefit cuts, gruelling re-assessments for our incurable illness, lack of work options, a non-supportive, primarily able-bodied society. These all combine to make life with MS an all too often uphill struggle.

No one should face MS alone, whether it is the person with MS or their child, or their partner or their family member. In amongst the joy of new treatments, we have to reach out and gather everyone who lives with or is affected by MS with us.

My dad was apparently a bit of a cheeky monkey (so that’s where I get it from). Once a keen mountaineer, an industrial chemist, a father of four and a husband, I hope he has left behind a legacy that I can do a little bit to move forward.

As I said in my tweet, I miss him more as each year passes. I will never be able to talk with him, the one person who would understand what MS has brought into my life. He remains ‘back then’.

But I’d like to think he would want to look forward, to a future where no one is left behind with MS.

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