A Year of Eternity

Grief is retracing the steps of this time last year.

That year is almost over and then it will be another year, as that particular day ticks over.

Utterly unfathomable in its ridiculousness.

A whole year without them? It’s preposterous.

That a person so vibrant, so full of life and so mindful and caring of others is no longer here is beyond reason. In amongst this year’s illnesses, birthday celebrations, small daily triumphs, even a pandemic, there is always grief.

I would like to say it gets easier, and yes, the raw, visceral grief of losing a sibling lessens its grip, but it is pushed deeper within and takes up residence.

I know the paintings he liked in my house, the coffee pot we had our last cup from, the table we sat at this time last year. I remember the plans we shared and were excited about and our last hug and farewell, although I didn’t know it then. The jokes, the laughing.

I miss him and I don’t think that will ever end.

How could it when we shared so many experiences no child or partner will ever share.

It has been a long and painful year since that day, and there will be many more to come. But we will smile when we talk about him, and laugh when we share stories and anecdotes. And that is how we will get through the next year.

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The Teenager

MS crashed into our lives in 2011, just as The Teenager was starting High School.

Unusually for MS, it came without warning – just a huge, life-altering Big Bang over the course of a weekend when my entire body collapsed inside, my mind scattered in all directions and my very being imploded; I couldn’t walk, talk or function.

For better or worse, my son was with me, all through the endless search for answers, the waiting, the eventual diagnosis, an employment tribunal, three courses of Alemtuzumab and their brutal after-effects, ongoing treatment and figuring his own way through life.

It was a learning curve for both of us, navigating entirely new scenarios, but we hadn’t envisaged this.

I went downhill, both in health and my mental state. One evening, I took him to a neighbour as I couldn’t cope. That was the day I decided to pick myself up and do something different and fight my corner after over a year of work-place bullying – to deal with a potential court case on top of Alemtuzumab was daunting.

We did it and I took him to Manhattan with the tiny pay-out, eager to show him where I had lived for a couple of years to make up for, well, everything; to show him that I had experienced a life he too could have – the possibility of travel and adventure.

He had missed out on having his mum on the rugby sidelines, the parents evenings when a friend would go in my place, the trips to the seaside I couldn’t take him to, but I was always there to hear his trials and tribulations, even when I was struggling to cut vegetables or clean the house. We managed. I slept as much as I could when he wasn’t there, attuned to his key in the lock, sitting up quickly and hiding the blanket.

He’s been a huge part of my blog, with his consent, and even now as he approaches 21 this week, he’s proud. Proud of all we have achieved together, our little family of 2 – sure, we’ve had our low points and arguments, slamming the fridge, the front door, the usual teenager nightmares. Yet, without him, there would be no blog, no book and I certainly wouldn’t be taking a PhD.

After that low point, I had two choices.

Give in and accept whatever came my way or stand up and fight back. As with so many health scenarios, we fought back. He came to protest marches, meetings, film-making, speaking on camera about his life as a child of someone with MS and many, many other things.

This week, The Teenager turns 21, a real milestone for parents.

I’m incredibly proud of him and how he has grown into a confidant, articulate and compassionate adult. He stepped up to the pandemic, moving back from University in March and taking a job at the biggest hospital in Wales for three months, before moving on to our building sites.

Now he is back in his University town, ready to celebrate his birthday, and I will take time out to think about how lucky I am to have a son like him.

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What I’ve Learned in Lockdown

As we are slowly coming out of this strange time, have I learned anything?

My initial reaction would be no, I’ve been too fearful, too worried and too anxious.

However, I really want to stay positive, so here are the things I have enjoyed:

You find out who your friends are

This is so similar to MS – you really do. Those you thought would stick by haven’t and vice versa. I called a friend weeks ago for a catch up and am still waiting the return call. In the same way, I have had the joy of catching up with people I haven’t heard from for ages.

Your Boss takes you shopping

He sourced and told me about the quietest shops and took me to them when I couldn’t get shopping slots. Along with my younger sister, who has been leaving food for me every week since this started, I am so grateful.

You have a garden

It’s random, filled with skip-dive plants and those rescued from home renovations, but I love it. I have never appreciated it more, now that we spend so much time at home.

Your son can cook

Yup, after he was told by his Uni to go home, he has been cooking a family meal once a week, a good chance for us to catch up and chat through everything that’s happening in the world.

Your son steps up

As well as finishing his Uni year, he’s also almost completed a 12 week contract with the biggest hospital in Wales, in housekeeping. I’m truly proud of him.

You keep writing

Despite the lack of coffee shops and places to write, I have had great support, especially from Russ Gascgoine, who has been sending messages to keep my writing on track. Not only that, we have had invaluable catch ups on the phone.

You teach Creative Writing online

We have run courses through MS Society Scotland and it’s been fantastic; we have uncovered hidden talents. Plus, we are starting a book club.

You shop local

Just that, shop local, if you can. For me, they are far easier to access than supermarkets and you know you’re supporting local businesses. As more shops open on Monday, I’m looking forward to staying local.

Telephone Bookcases

These have sprung up all over Cardiff and I take a bag of books every week (I’m reading a lot right now). Brilliant innovation and long may it continue after this is over.

For all of us, Covid has been problematic. If we can keep the togetherness that has bound us together over the last three months, perhaps we can look to a brighter, more local future.

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Rewinding The Disability Clock?

At the beginning of Lockdown in March, once my sheer horror and fear of it had subsided somewhat, I was quite hopeful, positive even.

We were all in this together and the whole world was suddenly available at the touch of a laptop key. Everyone I had ever tried to explain the feeling of being ‘stuck at home’ to – due to MS and the treatment I had for it – now knew what I was talking about.

Excellent, so far so good. Progress?

And so it continued – local groups sprang up, offering much-needed help and support. The TV, internet and newspapers assured us we were Never Alone and  I truly hoped disability rights and awareness would finally be advanced by decades, now we were all in the same boat, unable to access even the most basic services.

Now we are in June though, and I’m increasingly anxious. I’ve been fortunate to only work with one other person in a wide open space throughout this time, as well as having my University student son move back home for the duration.

However, for the last two weeks there has been a subtle but noticeable shift.

Unable to access supermarket shopping slots when I needed them the most, I’ve been queuing, waiting and working up the courage to face my MS nemesis. Before the pandemic, shopping in real life was a total no-go area for me, but now it is a necessity.

The first problem are the queues; I simply cannot queue without a walking stick or leaning on something. The second problem is the weather. I can’t deal with the heat, or Uhthoff phenomenon. Once in the shop, I’m pushed forward by the people behind me who probably wonder why I can’t decide what to buy. They jingle their coins in their pockets, sigh loudly and shift from foot to foot in an exaggerated fashion. Or they just brush past me, muttering vile insults under their breath.

My hands tremble, I lose my balance (impossible to use a walking stick and carry a basket simultaneously). Once at the queue for the checkout, it’s the same. We are of course rushed through after waiting in line and I drop most of the shopping I’m buying. I try to explain, but they’re busy and the queue behind me is growing as is the animosity.

Two weeks ago I had to ‘prove’ my disability to a man outside a supermarket, who was in charge of the queue. He had a high-vis jacket and a fat book of rules. After a loud, public conversation, and showing my MS Society card which states I have MS, plus my son’s NHS staff card, I was grudgingly allowed into the shop. The same thing happened today – I was harangued by an elderly gentleman who wondered why I was being too slow through the shop’s newly-introduced one-way system.

I can’t do it.

In many ways, I feel more disabled now than ever and I wonder why we are not being heard in amongst the conflicted messages from government . Casting my mind back to my diagnosis in 2012, I had the same fears, and without knowing it, I could kind of blend in, just about. Now, that’s impossible. My anxiety levels are rising and everyday things I once took for granted, with a huge MS exception, are almost out my reach.

So I stay in my house and study and chat to my son. My boss picks me up and takes me home again. My world is very small, despite my large Zoom window.

Once it was my MS treatment which shoved me onto the sofa, now it’s the world.

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Hunkering Down In Lockdown

I was off work for a week during the dramatic escalation of Coronavirus here in the UK and had felt quite cocooned, my usual MS problems combined with a trapped nerve I was receiving treatment for having kept me at home.

Going back to work was unreal: it was the same building site, luckily secluded with only one other person working, but everything was different. I looked around, remembering the Good Old Days when my main concern was picking up milk on the way home. It was utterly impossible to take in, that the world had changed so much and in such an unexpected way. Driving back through an emptied capital city just reinforced this. Life would never be the same again.

I cried. I cried on site and I cried when I got home. Watching the news and seeing country after country across the world close down was utterly beyond comprehension.

Fast forward a couple more weeks and my son is now home from University, still studying online and now working as a housekeeper with the NHS. He makes his bed in the morning and cooks for himself but I am banished from our living room when he works out, huffing and puffing with my weights and kettle-bell that served just fine as a doorstop for many years.

There is much talk about the ‘new normals’ – something all of us with MS have had to adapt to over the years, regardless. It is heartening to see so much online and, wow, accessible. For once, the world is perhaps coming to us. So this is a very unreal situation for those of us who are quite at home with being, well, at home, because we have to.

For me, I have strategies in place. Concentrate on small pleasures, make a list, watch the clouds go by. Now we are all doing the same thing, it’s quite wonderful. The media is full of ideas, hints, tips, opinion columns, all aimed at Me. Us. Suddenly, museums are open, there are online lectures, I can travel the world, dip in and out of talks with the cream of authors. In a way, it’s amazing.

Yet, can this last? If you are on furlough, are worried about your job or have you always been at home, what happens next? Will these wondrous interventions such as tele-medecine continue? What we thought could take years, has taken place in a matter of weeks.

So, it looks good for us? Or does it? The benefits system has yet to catch up. A lot of us cannot access carers. There are no groups, no access to the work we once took pride in. Where do we figure in this seismic change?

We cannot be forgotten during this. I know there are a huge amount of fantastic interventions in place, but there are always people behind the figures and we cannot forget this. I can’t think of a time that is more pressing for an understanding of MS, bar my dad being diagnosed back in the 70’s.

MS charities may go under but we need them more than ever. Engage, if you can, take part in discussions with them and if you have the energy, fundraise. They need us as much as we need them.

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