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.

scenes from the waiting room

Or "What is up with people?"

I wrote this a while ago but I'm publishing it here because I have a couple of hospital appointments coming up over the next week. I hope posting it will mean I can avoid the sort of person I talk about below!

At the hospital for a Tysabri infusion earlier this year there was a guy sitting next to me who was having a loud phone conversation about how shit his life is. About how progressive his MS is and how few options there were for managing his condition.

But he didn't do it in a self-pityingly morose way. It was like he was bragging about how hard he had it. Like the chronic illness version of Monty Python's Four Yorkshiremen sketch.

I get that this might have been some kind of coping mechanism. But surely that kind of chat should be reserved for home. Or the pub. Not in a room full of people, presumably with the same condition, who are battling those same persistent thoughts about progression and increasing disability and decreasing life options.

Maybe it's just me.

But there were a couple of young people on the ward that day. Maybe they were recently diagnosed? And they looked shit scared.

Bet that didn't help.

Shortly afterwards I saw an older guy giving himself an ulcer by stressing about how the busy nurses were ignoring him and seeing other patients before him. Which obviously didn't make them see him any quicker.

I mentioned this kind of thing to a nurse when I was getting a blood test recently. I said that surely this kind of thing never happened to her.

She said you'd be surprised how much mouth she gets from patients - about waiting times or the environment in the clinic - immediately before she sticks a needle into their arm. You would think they would check their attitude before confronting a nurse who has the power to make them very uncomfortable indeed.

I try to be a nice patient - especially when having a blood test - so the worst I get is a nurse who jokes that it's her first day on the job. This happens pretty regularly.

I always think it's pretty obvious that those who are disrespectful towards the people who are there to help them - nurses, hospitality staff, shop workers - have never worked in the service industry.

Talking about this with some box office staff at the Arts Centre where I was based earlier this year, one of them proposed a new type of National Service. One where people have to do 6 months to a year working in the service industry. Or what is sometimes called a McJob.

I think that overall levels of empathy would only be increased if this was brought in.

seems legit

meeting with my neurologist

I had my annual MS MOT earlier this week. If you're anything like me, you'll have waited all year for a precious meeting with your Neurologist so you write a list of topics and questions in advance.

And after going through them - and doing the "follow-the-tip-of-this-pen-with-your-eyes" trick - you get outside and realise that only 10-15 minutes have passed.

The good news is that the last couple of MRIs have been good - no new lesions, no sign of Progressive Multifocal Leukoencephalopathy (PML) - and he's really pleased with how things are going.

Which is great because you've spent the last few weeks in a state of insomnia-induced high-anxiety. Is this a new symptom? Is my mobility worsening? Or does MS simply continue to be a fluctuating and endlessly slippery bugger?

As I've mentioned before, by the time my infusion comes around I can really feel ready for it. And one of the things worrying me was a feeling that this pre-infusion feeling was getting longer.

When I mentioned this, my neurologist said that this was a "placebo" - I think (HOPE) this was a slip of the tongue and he meant psychosomatic. And anyway, how's YOUR Greek?

So that's cool.

Having said that, when I had my infusion a couple of days later, I felt bloody great afterwards.

This was probably helped by the fact that this infusion (my 23rd) was the quickest one yet. I was in and out in less than 90 minutes, including pre-infusion observation, magic bag o' Tysabri and post-influsion flush.

If things continue as they are (no disease activity on a disease modifying therapy I can get on with), I don't see any need for me to change my medication. Especially because the next option for me - Ocrevus - would involve me having a Lumbar Puncture, something which I've managed to avoid so far.

Even though Spinal Tap is one of my favourite films ever, I really don't fancy it.

LOLZ from the clinic
I wore my FES to my last infusion - but obviously I pulled my shorts up hastily after a trip to the bathroom.

Which resulted in me looking as though I was giving my junk an electrical charge.

extreme new treatement for MS

wheelchair envy

To sort out my little blueberry toes, I recently had to get a blood test. I always find there's a real sense of camaraderie in waiting rooms. People just chat and pass the time waiting for their number to be called.

Any frequent reader of this blog will know that my attitude to my wheelchair can be described as ambivalent at best (if not downright hostile).

When I was getting it I learnt that if your chair can fold up and/or come apart it tends to add to the weight. So there's a payoff for the convenience.

But in the waiting room on that day I noticed that the woman sitting in front of me had a super snazzy set of wheels.

After passing the time of day, I had to say, "Excuse me for asking, but is your wheelchair as light as it looks?"

She told me it was and was made of titanium. The frame is also totally rigid, although the wheels can come off.

It's a Quickie like this one (stop sniggering at the back).

I said that my own chair was super heavy. And even though I genuinely wasn't angling for it, she asked me if I'd like to have a go.

As a glasses wearer I've always hated when people ask if they can try mine on so I said no thanks. But she insisted.

Please note that I find propelling myself in my chair totally exhausting. It's so heavy!

But this was like going from an old car to one with power steering. I only had to brush my hands past the wheels and I was off.

With her encouragement I went off for a scoot around the hospital. In a couple of minutes I covered a lot of ground, zipping down corridors. The difference between it and my own chair was astonishing.

When I reluctantly returned her chair she said that it had been custom made to her specifications. And it had cost around £4,000 to get one in the UK.

Ouch.

Don't be surprised if I reinvent myself as an Instagram or YouTube influencer in the forthcoming months.

yes my pretty, one day you shall be mine...

live music and accessibility

Last weekend I had pretty much the perfect disabled-person's gig experience.

A friend spotted that the buzziest of current UK buzz-bands, Black Midi, were playing at a nearby art venue. Along with another friend, we've been listening to them for the past few months and we were lucky enough to get tickets - they don’t publicise their gigs and have a minimal online presence.

I offered to drive because I wanted to take my wheelchair - pretty handy having somewhere to sit and I wanted to make sure that I wasn't too fatigued for the drive home.

The venue's website states that they "have an accessible building with lift access on all floors". But I've been burned before so on the afternoon of the gig I called them up to make sure that it was going to be ok. (Yes, it was last minute but we only found out about the show a few days beforehand - like I said, minimal online presence).

The person I spoke to could not have been more accommodating, telling me which entrance to use and that there would be somebody waiting in the (closed) shop to take me and my friends down in the lift.

Through past experience I wasn't entirely convinced that it would all pass off so painlessly. But I'm pleased to report that everything worked beautifully. There was even another person waiting for us when we got to the bottom, and once we were down there it was all beautifully flat.

I stood for both sets - using my sticks or leaning on the back of my chair - and both bands were brilliant.

The support act were Nottingham's own Rattle and during their set Black Midi's Tour Manager came up to ask if I wanted to go to the side of the stage for the headline set. I was really pleased to be asked but I'm a bit Old Skool (as well as just generally old) and I like being in the middle a bit further back. It turned out that the position he was offering me was directly behind the drum kit and, as Morgan Simpson beats the crap out of his drums, my ears would still be ringing now, a number of days later.

I caught up with the Tour Manager at the end of the night and thanked him for his consideration and for the fact that they had come to a venue which was so insanely accessible. In recent years, I've had to miss a few of my favourite up-and-coming bands because they've played at a venue which is only accessible by stairs (with toilets only accessible by more stairs). Yes, I can get to Arena venues and bigger spaces but sometimes you want to go somewhere up bit more up-close-and-personal, don't you?

He expressed dismay that this was still going on - "Isn't that sort of thing illegal now?"

Well, yes, technically. It should be the norm that live experiences should be accessible to all shapes, sizes and capabilities. But we all know that this don't necessarily make it so.

I love going to gigs and I don't get to do it as often as I like. It's still mildly frustrating that we have to call up in advance to ask questions and lay out the details of our needs to complete strangers. But this goes to show that it can be totally worth it. And an increasing number of places accept the Access card as proof.

By the way, the gent who let us in at the start of the evening was even there to let us out at the end of the gig. Bravo, Nottingham Contemporary. And many thanks to my lovely mates who pushed my wheelchair for me when I needed it.

If you want, you can even hear a lengthy email I sent into the lovely Marc Riley on BBC 6 Music the following day - it's a long email but he read the whole damn thing (with a few interjections of his own) from 09:20 here.