Author Archives: stumbling in flats

Stepping Into The Future

Grief has overwhelmed me since last year.

I am nowhere near over this but I know I have to take small steps to a different kind of life.

I have been poleaxed, hermit-like at home, bar a few special occasions. This has to change. I know now that I will always be carrying this grief; it may alter slightly but the ramifications of it never will.

Losing a sibling through grief changes you irrevocably and I can see that I will never be the person I was before. But I have to start looking after myself and my little family alongside treasuring precious memories.

I have been spiralling into somewhere I do not want to go. With a huge debt to my friends, I am starting to engage with the wider world once more and I want to stay here. At the turn of the year and decade, I am determined to bring some semblance of joy back into my life, and my son’s. He is the one who made me think; he came back for the University Christmas break in early December and his infectious zest and energy lifted me and our little cottage out of the fog.

I realised the other day that I have been blogging about life with MS since 2012 (The Teenager was 13, he’s 21 this year!), and you guys have seen me through ill-health, exams, the good times, the bad times and now the awful times. I feel immensely privileged to have this platform. You’ve been everywhere with me.

It’s too easy to feel we are alone when we are most vulnerable. I know, I felt that way. You, along with my close friends, have pulled me through yet again and I am beyond grateful.

I am trying to embed positive habits in 2020. I have started a journal-writing course with Mab Jones, which is an excellent way to reflect. I am changing one small thing every day to shake up my routine, something I first heard about through RD Laing’s literature – although there is a whole lot I don’t agree with him about. I am awake early every morning so I build in some PhD study time before starting work.

Very, very small steps. I will never, ever forget my brother. How could I? Yet, if I can incorporate some of his beautiful personality into our lives, surely this is a step in the right direction?

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.

The Human Side of Politics

I rarely write about politics, although I have taken part in other media regarding the utter disregard the national political narrative seems to have for disabled people, despite the fact there are 13.9 million of us in the UK.

Since the global recession, the optics have been cleverly shifted away from the very source of the problem – the finance sector – to the most vulnerable of its victims – us. And when that ‘us’ have no voice, it’s a recipe for right-wing thinking.

Slashing disability benefits was a good place to start and allowed the media free reign to wage war on us, and how. We were cast as the ones draining the economy, not the foolhardy bankers. It’s a staggering leap, but the press and public latched on to it with a vengeance.

Living in a marginal seat, I’m going to share my experience of my previous MP, Labour’s Anna McMorrin and her Conservative predecessor.

Long story short, Anna McMorrin displayed a deep compassion not often seen in today’s politics.

A few years ago, I noticed that the parents of a local school took every disabled space in the main car park, behind the shops where I live, twice, three times a day. I asked a few of them why they did this as there were plenty of other non-disabled spaces. Their replies were illuminating:

‘Disabled people don’t go out this early’

‘It’s only for five minutes, what’s your problem?’

‘They’re all scammers anyway’

When I met my Conservative MP canvassing for votes outside those shops one day, I approached him and asked him if he would help with this matter. He told me it wasn’t his problem and I should speak to the school involved. When I said I already had and was told, ‘it’s not my problem, speak to your MP’, he couldn’t get rid of me fast enough and in an extremely dismissive manner.

Fast-forward to October 2017, five years after I was awarded a lifetime Disability Living Allowance(DLA) due to my diagnosis of Multiple Sclerosis. Until MS is curable, it makes sense; it’s a progressive, degenerative illness.

I received my ‘invitation’ to reapply for the new Personal Independence Payment as DLA would be stopped. I went into a tailspin – for five years I had tried to remain positive, focus on the positive and, well, be as positive as I could be living with MS. Now I was invited to write endless answers about how much MS had negatively impacted my life and would continue to do so.

It was a desolate, soul-destroying experience, picking apart my life in minute, excruciatingly personal detail. I went in to a deep depression and had to ask for further time to complete the paperwork. However, I was blessed to have wonderful support in Stuart and Marie Nixon who held my hand and kept me sane throughout the whole experience.

I submitted the paperwork on Christmas Eve 2017. On 13th February 2018, I had a face-to-face assessment at home by a Capita representative. I could write endless blogs about this car-crash, but suffice to say, she somehow observed that I was absolutely fine (without any Quality of Life measures or fatigue measures undertaken, amongst many other complaints) without taking her eyes off her computer. In fact, she appeared stressed, hurried and short-tempered and told me she had had a long day and I was the last on her list.

Of course, the next month, my benefit was reduced drastically. I send a mandatory reconsideration letter. This was turned down. I sent an appeal for a tribunal, and was informed at the end of June 2018 that it would be held at ‘some point in the future’.

And then fate intervened; someone who reads my blog met my MP, as-then Labour’s Anna McMorrin, and told her of my case. This person (still anonymous to this day), emailed me, urging me to contact Anna as she could help me. I didn’t hold out much hope, but was running out of options, so I called her office and spoke to a lovely case-worker, Lauren. I sent documents over and waited for the rebuttal.

It never happened. Instead, Anna and her team fast-tracked my appeal, moving it from a normal PIP tribunal to a District Tribunal Judge. By this time, I was in hospital for a hernia operation, as if MS wasn’t enough. After two nights under observation, I came home to a letter – in my absence, I was awarded PIP.

To add some context to how much this means to me – the loss of DLA meant I was perilously close to homelessness. In preparation, I had already contacted shelters and advice-lines as to what my next steps could be and the outlook was bleak. I have no partner to fall back on and due to MS, I work part-time so all living expenses were my responsibility, with the added stress of factoring in time off for MS problems. I spent endless hours working out the figures and they simply didn’t add up. It was a tipping point.

In short, Anna McMorrin has kept me in the house I have made home for me and my son for the last 15 years. I am not in a shelter, awaiting rehousing. I have breathing space, so I can pursue my dreams of further study. I feel safe.

My body might continue to conspire against me and it does so on a daily basis. But to know that I still have my own personal space, and to keep hold of the only home my son has ever consciously known, means the world.

I believe we have a Conservative candidate parachuted in from London. He may well have grown up in Cardiff. I grew up in Glasgow, left as a teenager, but would never claim to understand the intrinsic social problems there now. I do not want this person to represent me.

Anna McMorrin restored my faith in politics and for that reason, I will support her all the way, as she did for me.

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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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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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