the boy in the bubble

Earlier this week marked the third anniversary since I left my previous job. It's pretty mad that it has been so long!

After only a short time I felt that I wouldn't be returning to full-time traditional employment.
It hasn't been easy - as regular visitors to this blog will know. I had to spend quite a long time navigating the benefits system and applying for jobs, on top of applying for PIP (twice) and having the mother all relapses.

It has been pretty trying - to put it mildly. And not just for me but my wider family, especially Mrs & Little Ms D.

However I really do feel that I've turned a corner. I'm working a lot at present and I hope it'll continue!

---

 

Obviously there's a really important election taking place today. The last ten years of democracy have been hugely disappointing for me. The Conservative and Lib Dem coalition. A narrow general election win for the Tories. Ten years of austerity. Brexit. Trump.

This might be the most important one yet. For the future of the NHS in particular.

Previously I've been suckered in by what I have seen on social media. I am well aware of the fact that we live in our own echo chambers.

My feeds are filled with people who think the same as me, the same as your own. But I'm trying not to let myself be tricked again.

A friend of mine from university has worked as a corporate lawyer and is a successful businesswoman. She has been clear about her intentions for this election which has been incredibly heartening to see. Just because you are well off doesn't mean you have to stop thinking about other people. And left-of-centre values are not necessarily anti-wealth.

She has been trying to engage with the opinions of others and recently asked the Tory voters on her feed if they could explain to her why they would be voting that way this time. It was a noble idea but people questioned her intention to understand the other sides' motives and got pretty defensive. And people started on about benefit scroungers, magic money trees and the like.

So after biting my tongue for a while I done wrote a thing:

Soapbox alert. I've been following various parts of this thread with great interest and increasing respect for Suzanne in trying to raise the level of debate on this issue.

I'm not interested in niceties or understanding the other side's point of view. I'm a supporter of the policies and values which are aligned with the Labour Party. I'll be voting for them.

I'm a self employed person with a disability. Being disabled is not a lifestyle choice, it's expensive. I've got first hand experience of negotiating the labyrinthine Kafka-esque nightmare of the austerity-era benefit system.

Ever tried applying for PIP? It's demoralising and utterly depressing. Being questioned and doubted in my own home, and being turned down for this benefit after previously having a lifetime award for DLA (SPOILER ALERT: It's a chronic illness, I'm not getting better) almost drove me to suicide.

And I'm one of the lucky ones who has a support network and whose first language is English. People who vote for the Conservative party are effectively saying that they do not care about me or the security of my family, or for anyone else in a similar position.

It's inhuman to assume that Labour policies will encourage people to sponge off the state. And it's arrogant beyond belief.

I was not born disabled, I was diagnosed with MS at the age of 32. This could happen to any of us.

I have continued to work and pay into the system which benefits us all. There but for the grace of god and all that. Look outside your window sometime.

My preference is clear but I don't really care who you vote for. This version of democracy is the only one we've got and I stand by it.

And party allegiances aside, I hope that whoever gets in can do something to stop the UK being so utterly divided.

See you on the other side!

the blogger's conundrum: an ongoing series

Despite appearances to the contrary, I think about writing something here several times a day.

But... well.

See if you can pick the meat off this lot!

I had an MRI scan recently

But I got into the scanner bang on time for my appointment. And as I mentioned last time, it was almost entirely pleasant.

The only bummer was when I had to redo a section because my legs were spasming all over the place.

My last Tysabri infusion was a bit odd

For some reason I'd been booked onto the system on a day when hey didn't even do infusions. Dramarama.

Except not. Because they got me in and out even quicker than normal. Ok I had to sit in a normal hospital ward with some genuinely ill people.

But still. Hardly the stuff of misery memoirs, right?

I recently had a minor medical procedure

It was nerve-wracking but still. No more than 20 minutes of mild discomfort.

Undoubtedly an odd experience. But MS has given me a higher-than-normal tolerance for weird medical appointments.

Not the sort of content which will get me a book deal. Worst thing is, I've not been able to go swimming for two weeks.

Christ. That's it!

I've had some podcast meetings and enquiries. And it seems to be ticking along quite nicely. Could always do with more, so if you know anyone, get them to get in touch via The Podcasting Editor website.

My MS seems to be behaving itself mostly. Sleep can be hard to come by. And I've been waking up pretty stiff most mornings. But the lack of sleep won't be helping that will it? Or the lack of swimming.

If it's ok with you, I'll try to keep it this dull from now on.

that’s not MY MS...

Parents everywhere will know the "That's Not My..." series of books. If you don't have kids, the pages have different textures and readers go through a process  of elimination - that one's too bumpy, shiny or furry, etc. - until you discover the correct monkey, dinosaur or robot (for example). 

Wow, I sucked the joy out of those sweet little books, right?!

However I've been reminded of them recently.

A couple of years ago I read Jon Ronson's brilliant So You've Been Publicly Shamed. It's all about internet shamings, predominantly on Twitter, where someone speaks out of turn or makes a poorly thought-out joke and, because it doesn't fit in with the accepted view of a particular echo chamber, the other members pile on top of them.

Listen to an abridged version of the book read by Jon Ronson on the BBC.

I picked up on a tweet recently, by someone that I follow.

It seemed pretty innocuous and chimed with my own thinking, so much so that I shared it myself.

However, the original tweet didn't fit so easily with the accepted narrative of a small corner of the Twitter-sphere. Some users picked it apart and got pretty angry. I won't share grabs of their messages, for reasons that will become apparent (and I got permission from Mr S before I started writing this).

Some felt that he was being ableist and didn't understand MS (they could've found out that he has the condition himself). Some reacted as if he was saying that the way they were living with MS was somehow incorrect. Some felt he was basically saying that all the things they were living with weren't that big a deal.


One of the things people are told when they receive an MS diagnosis is that everyone's MS is different. Which is why some people call it a "snowflake" disease - not in the current Trump-presidency alt-right Brexit-era sense of the word.

My initial thinking was that the people responding to the original tweet were denying Mr S' own experiences of living with MS. Plus I've traditionally had a bit of an issue with people who seem to live entirely through the filter of their illness. Perpetually blogging and tweeting about it. Everything was fine before I was diagnosed, everything has been shit ever since, no one understands, no one cares.

My original plan with this blog was to write about how those people had forgotten about the unique nature of MS. About how everyone's "journey" (that bloody word again) was their own. And what did they think the newly-diagnosed would make of these perpetual micro misery-memoirs?

However, I now see that by writing that blog I would be denying them their own experience of living with MS.

Who am I to judge them?

Truth-be-told, my gut instinct is that I agree with Mr S' view. I still don't think it's particularly healthy for people to endlessly repeat the same narrative and have MS as the centre of their being.

But then, I don't think it's massively empowering to (by way of a not-at-all random example) ignore the reality of your increasing mobility issues. Which is exactly what I'm doing currently.

If all the tools of social media had been in existence and so ubiquitous when I was first diagnosed, I can guarantee I would've been using them in exactly the same way that some people do. For God's sake, even an old fart like me has been keeping this very blog going for over 10 years now!

There is a kind of reflexive-perma-moaning which (no matter how understandable) will likely continue to stick in my craw. But I don't have to read it. And if it works for you, more power to you.

It might just be that YOUR MS isn't MY MS.

careful what you wish for

Oof. Crazy busy!

1. I - bizarrely - have a nice and growing number of clients for my podcast business. And I'm getting paid!
2. I'm still not used to talking about my "clients". or my "business". Weirdness.
3. Most of these are just editing jobs so far but I also launched a whole podcast and got it onto Apple Podcasts, Spotify, Google, Stitcher...
4. I'm actually really good at this!
5. Even though I'm LOVING doing the podcast work, I recently applied for another job. I didn't get it but it was nice to go for an interview and not have EVERYTHING riding on it.

All of this is despite the fact that I officially "have limited capability for work and work-related activity". This is from my recent Work Capability Assessment (WCA), something which I probably should've had for my Universal Credit claim way before now.

The first part of this involved filling out... ANOTHER FORM!

Well, it has been a while.

This one was pretty intense. But once again I used the Benefit Advice Essentials Facebook Group for some advice. And as before it was really helpful.

At first glance I thought I could take a good run at the form. But looking at one of their information sheets, it pointed out two things:

• Parts of the WCA form are directly related to parts of the PIP form.
• The Department for Work and Pensions (DWP) could use the information from a WCA form to make decisions on PIP applications.

After reading this, I made sure that anything I wrote on the WCA form didn't contradict anything I'd put in my last PIP application.

I got it done and submitted, then spent a couple of weeks stressing about having to have another face-to-face assessment.

And then I got a letter through the post, saying, as above, that I have limited capability for work. With no need for an assessment.

Which at first seemed like a bit of a result - woo-hoo, etc.

At first.

But then I realised. I hadn't lied on this form. And thinking back, I didn't so much as bend the truth at all on my PIP form.

And then I thought - so maybe I really am that disabled.

Don't get me wrong, it's great that I should get the support I need, especially as I try to establish my new of working.

But nevertheless, it's a bit crap, innit?

(It's that kind of penetrating insight which you keep coming back for, right?)

employment, work culture and MS

One of my favourite podcasts is Beyond Today from BBC Radio 4. The idea is that they talk about one topic from the news every weekday - as they put it, they ask one big question about one big subject.

A recent episode was called "Is the way we work bad for us?"

This was prompted by an office-space company called We Work which has a kind-of Utopian vision of the future of work. But some people say that it creates a culture of 'hustle porn' - people needing to be seen to be busy and competitive and be defined by the way that they work.

This episode also looked at how the quest for perfection has infected many aspects of modern work culture, leading to a crisis of burnout among young people.

I really enjoyed this episode of the podcast (to be honest, I enjoy them all) but I did spend a lot of time thinking "Tell me about it!"

my work history

I was diagnosed with MS 14 years ago. At the time I was working full time in arts marketing, something which I managed to keep doing until December 2016.

I don't want to go into how that played out again - my employer was basically pretty understanding about my health (up until the point when they weren't). But eventually it became unfeasible for me to continue.

Like most people with MS the main thing I deal with is fatigue. The act of leaving the house in the morning - making breakfast, washing, shaving, making lunch, travelling into the office - was one of the most exhausting things I'd do each day. Meaning that I could be wiped out even before I'd made it into work.

Even so, when I requested a day a week where I could work from home (something recommended by a Community Occupational Therapist), I was expected to tell my boss exactly what I was doing and what I had achieved on that day. My remote working was viewed with suspicion, despite the fact that I'd been in post for over eight years at this point.

Since leaving that job I've had a handful of short-term contracts but have struggled to maintain any consistent level of employment.

For a recent freelance contract I'd been open about my health during the recruitment process. Even so, I was expected to go into the office on most days, despite the fact that all of my role could've easily been done remotely.

Why is remote working still viewed with suspicion in the U.K.? Particularly as the primacy of an office-based work culture can effectively keep disabled people and those with a chronic illness out of the workforce? Never mind any macho hustling!

the way forward?

Interestingly, friends in America have shared news stories and links to organisations that seem to point to a more realistic path. See THIS LINK for a story about the value some US Businesses are placing on disabled workers and remote working.

It should be fairly standard practice - but in this country at least businesses might talk about social responsibility and reducing their carbon footprint (for example). And it doesn't seem to make a difference to working and recruitment practices.

The people I know who are either disabled or have chronic illnesses don't want to sit at home living off benefits (despite some media portrayals!). I want to support my family and I also want to keep my brain active. But work will have to fit around my illness and hospital appointments.

Kathy at FUMSnow.com is just about to launch her Patients Getting Paid course, which will help chronically ill people to find legitimate work opportunities that accommodate their health conditions, wherever they are in the world.

A recent FUMS podcast episode was about Chronically Capable, "a platform that strives to connect the chronically ill with meaningful remote work and flexible employers".

This sort of thing is amazing. Why don't we have anything like it in this country?

my (future) glittering career... hopefully

I've really enjoyed the work I've been doing editing the FUMS podcast. And y'know what? I'm really good at it.

Some of the interviews necessarily come with audio issues - dodgy sound quality, even moments where the audio has totally dropped out. I've been able to fix these to the extent that even I can't see where the edit is. I've also started creating additional bits of background music when it's needed.

With that in mind, and with the support of Kathy at FUMS and Jackie (Queen of GSD), I'm currently exploring the idea of working as a Podcast Editor (see the lovely website Jackie designed for me at https://podcastingeditor.com).

If I can make this work for a while it will be perfect for me. So if you know anyone who might need my (very reasonably-priced) help please get in touch!

nights that won't happen

David Berman (photo by Cassie Berman)

Silver Jews are a band that I liked and admired for many years. When they first came out, I was very much a fan of Pavement, with whom they (sporadically) shared band members and a similarly fairly loosey-goosey approach to instrumentation and recording.

But gradually the lyrics got to me. David Berman - who has died suddenly aged 52 - was a poet who wrote songs, rather than a songwriter whose songs came to be seen as poetry.

It was obvious that Berman was a man who struggled with depression and addiction. Yet the words were darkly funny, beautiful, heart-wrenching.

So Silver Jews became a band that I loved, eventually providing an unofficial soundtrack to my 2017 relapse. Long time and eagle-eyed visitors might remember the many posts from this period with titles taken from their songs.

They split up in 2009 in bizarre circumstances. And Berman disappeared from view, aside from a few sightings and rumours of recording sessions.

He resurfaced this year under a new name, Purple Mountains. In the intervening years his battles remained constant and he'd split up from his wife and former band mate Cassie. But the wit was undimmed.

The Purple Mountains album is up there with the best of his work, melodic, mordant, melancholy. But despite the journey the songs travel - through divorce, depression, addiction and grief - it seems to end on a level of acceptance and hope. He even talked in interviews about going on tour.

When I read the news of his passing on Thursday morning it was still a shock. I honestly haven't been as devastated by the death of a stranger since the other DB.

No cause of death has been announced yet. But it's hard not to surmise from the details we "know" about him (who can really know what goes on inside another person?) that - intentionally or otherwise - he ended his life.

I know that I and many other people have taken comfort from the way he would report from his front line with courage, clarity, dark humour and endless empathy.

The tragedy is, it appears that his words weren't enough to save him as well.

One particular lyric which has been going round my head since Thursday morning is from Pretty Eyes, the last track from Silver Jews' second album, The Natural Bridge:

I believe the stars are the headlights of angels
Driving from heaven to save us
To save us
Look in the sky
They're driving from heaven into our eyes

That's how he sings it, anyway.

On the lyric sheet it reads, "Won't you look at the sky?", not "Look in the sky". I guess it just sounds rhythmically neater.

But in the written lyric, he's pointing to the sky, imploring us to look showing us that it'll be ok. That salvation - of whatever sort you might need - is coming.

I wish he had been looking too.



I hope there are enough links in this post for you to explore David Berman's work.

There is a brilliant article about the recording of "The Natural Bridge" on Stereogum.

no sympathy

I've noticed that when a celebrity comes out as having MS, the response of the online community can be a little... troubling.

Initially there's support for 'one of us', a new member of our own wonky club. Plus they're shining a light on our condition. They're demystifying it for the general population. They're showing that life doesn't need to end after an MS diagnosis.

And then... we can often seem to turn on them.

Selma Blair is the most obvious recent example. She came out in a really public way with some upsetting symptoms for anyone to deal with, let alone a young woman. Poor mobility, speech problems. Hard to deal with when you're an actress, right?

I think the snark started when she was spotted using an Alinker walking bike. These are pretty expensive bits of kit, with crowdfunding being the way most people are able to source one.

Did she even have to pay for her Alinker? Is she being paid to be seen using one?

Just recently she has appeared on US TV and Instagram sharing her experience of Stem Cell Treatment. And there've been some pretty harsh comments.

Things like:

"These people have all the advantages. They can't compare their journey to ours"

And:

"They're playing the victim card. I have friends who are dealing with worse and are more inspiring"

FULL DISCLOSURE: I know where this kind of thinking comes from. I'm not judging, it's only natural.

But the thing that can be missed with reactions like this is the fact that Selma Blair is a young parent who has been blind-sided by a life-changing diagnosis.

I think we can all empathise with what she's dealing with. And I speak from my own experience that I have been willing to try anything if there's the slightest chance it can help (hello, Reiki!).

And the fact is, if money were no object, wouldn't you be willing to try anything for the sake of your health?

At the very least (and I'm hyper-aware that this might not show me in the most charitable of lights so bear with me!), I'm quite happy for Selma Blair and Jack Osbourne to be the guinea pigs for Stem Cell Treatment.

Let's face facts, as amazing as it potentially is, it's not yet a fully proven treatment.

Look at what happened to Caroline Wyatt. The BBC journalist paid to have stem cell treatment in Mexico in 2016. And following six months of feeling good she has eventually arrived pretty much back where she was in the first place. In an interview with the MS Trust earlier this year, she said:

"I do know people for whom it has halted progression, equally I know people who've been worse as a result and I know of one person who died."

So I'm more than happy for research to carry on. And for that research to be robust and trustworthy, we're going to need test subjects.

Any results - positive, negative or indifferent - will feed into future treatments. As if on cue, this (from the MS Society) popped up on Twitter earlier today. More please!

We're all dealing with the same beast, regardless of any financial or social advantages - so let's try not to pick fights with each other.

Or as my pithy yet degenerate friend SwissLet put it in a recent comment on this very blog, "Don't be a dick".

It's a lesson I could do with heeding myself.