Friday, 20 April 2018

temporary skin art

I decided to treat myself to a bit of skin art for the summer months.

I've always known that I'm too indecisive to ever settle on a permanent design for a tattoo. So this kind of MS-specific temporary skin art is perfect for me. If I change my mind I know it'll be gone soon enough!

People ask if it's painful but the lucky thing about this kind of application is that you don't even know it's happening until it's done. So no need to worry about the discomfort in advance!

Rather than get it done at home I went to a new place for this one - I simply lost my footing and fell onto my Mother-in-law's kitchen cupboard.

The whole design is just over 3 inches wide. It's pretty abstract and the colour's already started to fade but I'm still really happy with it.


What d'you think?

Monday, 9 April 2018

from our own correspondent

Nearly two weeks since the end of HUConnexion18 - it all seems like a strange and beautiful dream now, that we did THAT and met so many awesome people.

There were some great moments and I really want to get these down and out of my head before too much time has passed.

God forbid that it could feel like I'm banging on about it even more than I am!

1) THE PEOPLE
The first time I went to New York I was worried that the incessant "Have a nice day"s would be too much for my hard-won British cynicism to take. It turned out, I loved it - it seems fake in this country but to my surprise people genuinely seemed interested in other people's experiences and stories.

I've been writing for Health Union / MultipleSclerosis.net for around five years now and it was great to finally meet people who I'd only communicated with by email (who were so amazingly welcoming and grateful that we'd made the journey). Similarly, the other contributors - just fantastically positive and proactive, regardless of how far down the road of their health "journey" they might have travelled.

2) LOVE THE LURKERS
There was one session which was all about the different communication needs of health communities. The bit that stood out for me (as the writer of a sporadically-popular blog that gets a tiny number of comments*) was that the people who visit a site and don't leave a comment actually read posts and can get the most benefit from them.

* because obviously, everything's ultimately all about me, right? Yeesh, what a loser...

This reminded me that community is what happens when you talk to someone (face-to-face, online, whatever) and the other person JUST GETS IT. And this also reminded me about how important that feeling was when I was first diagnosed. 

3) OWN YOUR STORY, DON'T LET IT OWN YOU
On the day we came home there was an AMAZING session led by Laura Hope-Gill, whose own late-onset deafness prompted her to focus on the healing power of what she calls Creative Nonfiction.

Her talk was about the fact that we all carry these stories with us, about our own tragedies and the trauma of our diagnosis. And these are important to us and the way we deal with the situation.

BUT we have the power to decide what form our story takes - it's not the only story we have to tell, so we shouldn't get stuck in a loop, endlessly writing and rewriting our trauma. I made a note of this quote from Laura's talk but not its author:
The bad news is you’re falling. The good news is, there is no bottom.
I LOVE that!

Laura also talked about the importance of listening properly to others' stories - the way she talked about it, when someone tells you their story it's really a privilege.

I know I'm guilty of responding immediately with a quick-fire, "Oh, I know, that's happened to me...", because I like to think it makes the speaker feel less alone. Key takeaway quote:
Self-disclosure, sometimes mistaken for mirroring, is not listening. It is a substitution of one's own for the other's experience.
All it does is shift the focus back onto you - it is not helpful.

One more quote from Laura's session:
The world will come to an end. But love and beauty will remain.
Heavy. But overwhelmingly positive.

Much like HUConnexions18 itself. And I've not even covered all of the sessions that well-and-truly squeegeed my third eye. I've already started planting seeds to ensure we get an invite to the next event in 2019.

And anyway, we also managed to do a bit of sight-seeing, as proved by this picture of me hanging out with Benjamin Franklin.

(Although I should've tucked my shirt in...)
 

Saturday, 31 March 2018

a lovely time was had by all


We left Philadelphia and HUconnexion18 on Tuesday afternoon, landed in the UK on Wednesday morning and I've been trying to make sense of my notes ever since.

Despite an almost hallucinatory level of exhaustion and displacement, we had a fantastic time. We met some amazing and inspiring people and made a number of new friends along the way, both Health Union staff and fellow patient advocate contributors.

I'm still trying to unpack all my thoughts and the lessons we learned. There will likely be a number of disparate blogposts about our three nights in Philadelphia - about the logistics of travelling with a wheelchair, about owning our own stories of chronic illness as opposed to being doomed to endlessly repeat the story of our diagnosis, and about the value of community and the validation that comes the first time somebody just gets it.

On an entirely personal level, the fact that we were able to travel so far on our own is a massively big deal.

If you had told us last summer, when I was up to my ears in relapse, that 9-10 months later we would be travelling over 3,000 miles to attend a conference, we would've laughed in your face. But now we know we can do anything we set our minds to.
my new besties - spot the British teeth!

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Monday, 5 March 2018

how do you think it feels

This morning I got a bumper fun pack from my friends at the DWP. This contained:
  • Copies of both of my PIP applications
  • Notes from both of my assessments
  • The DWP's notes on the applications, including the rationale for turning me down in each instance
  • Their responses to both of my requests for a Mandatory Reconsideration
All topped off with the following charmingly abrupt statement:
I've considered all the available evidence and considered which descriptors apply for each activity... I agree with all the descriptors selected.

I oppose the appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.
It was not a great start to the day.

Every time I get one of these - and since January 2017 there have been a few - I immediately go into a mood of equal parts rage and despair.
"I don’t know if I can keep doing this any longer"
I can't help thinking that this is exactly the response they're counting on.

I end up ranting to whoever is closest to hand (apologies to the divine Mrs D), then firing off messages to my Dad or on Twitter [FULL DISCLOSURE: it's usually always both].

Then I take a deep breath, look through it all again, listen to the thoughts of the people around me, and think:
"There's no f**king way I'm giving up on this now"
I wish they'd let me stop! I'm not trying to bilk the system and I can think of a million things that I'd much rather be doing.

But if that's the way it has to be... 

Friday, 23 February 2018

a philadelphia story

"who let the miserable limeys in?"
Next month I'll be attending HU Connexion 2018, a health advocate conference in Philadelphia. This has been organised by Health Union, the people who run the Multiple Sclerosis website I write for occasionally.

To be honest I haven't written for the site for a while so I ignored their first few emails about the conference. Plus it's in America. Which is, like, a long way over there.

But the site administrators got in touch a couple of weeks ago and asked if I could write something about being a father with MS. After writing the article (first objective: make Mrs D cry; result: success) I mentioned the conference in an off-hand, "wouldn't it be nice" kind-of way. And everyone I told about it said I had to go for it.

By this point we'd missed the RSVP date but thought it was worth a punt.

And we found that not only had they extended the date but they would be delighted to have us there. So they're paying a good chunk of our travel costs, feeding us and putting us up for two nights at a pretty nice looking hotel in Philadelphia.

It's not somewhere we've ever thought of going but it looks a really cool city with a lot of history. And it's not every day someone offers to pay a good whack of your travel to attend a really interesting looking conference.

I just hope that the positivity of these advocates won't put people in the UK (myself VERY MUCH included) to shame with our constant griping and competitive disability point-scoring.

HUGE thanks to the team at Health Union who responded (really quickly) to all of our requests. You really helped us out and we can't wait to meet you!

And massive thanks to our American correspondent Ms. CrankyPants for giving me a bit of local knowledge and letting me know that (apparently) the Philadelphia 49ers have recently won the Super Ball FA Cup final.

Good to know, I certainly don't want to look stupid, do I?

Tuesday, 13 February 2018

the father of a PIP applicant speaks

When I'm writing this blog it's a very self-centered thing,  a way for me to sort out all the thoughts in my head and log my experiences and problems. If we're lucky then we'll have people around us who are also going through these tribulations alongside us.

A few weeks ago my Dad said that he had something he wanted to write. Here it is. 


History Repeating Itself or What Goes Around Comes Around?

My wife says nobody will wade through the potted history bit to get to the point I'm trying to make, I hope she's wrong! Here goes...

Before World War Two Germany was in dire financial straits. The powers-that-be decided they needed a scapegoat and decided on the Jews and all others they deemed a burden on the economy and society. During the war these same people came up with "The Final Solution" and subsequently handed the implementation of this policy to the SS.

With ice-cold logic the SS realised they could achieve their objectives more efficiently by utilising some of the inmates to organise the low level day-to-day running of their concentration camps. These inmates, known as Kapos, were often more brutal than the SS in the treatment of their fellow inmates. They were rewarded for their efforts with better food, accommodation and the removal of the fear of torture and death.

As the war progressed it became apparent, to the people at the top, things were not going to end well. Many started to distance themselves from the "The Final Solution", claiming it was not what they had intended and denying all knowledge of the death camps. The SS, realising they were in the frame for blame, again utilised their ice-cold logic. They came up with the now infamous mantra, "We were only obeying orders".

Well, that's all right then!

At the closing of the camps the Kapos gathered together expecting to be rewarded with freedom and congratulated on a job well done.

Consequently, their masters executed them. The SS regarded them with even more contempt than the other prisoners.

So much for old history.

Fast forward to the beginning of the 21st century. With the global financial crisis, the UK finds itself in dire financial straits. Austerity becomes the buzzword and the powers-that-be need scapegoats. I know what we can do! We'll use the same old reliable fall guys. Lets blame all our woes on the immigrants and the "liabilities" who depend on our inflated welfare budget.

Who are least able to defend themselves and least likely to kick up a stink if we attack them? You've got it! The people on welfare and the sick on disability allowance.

We have a solution. We'll get rid of Disability Living Allowance (DLA) and replace it with a policy that is so difficult to qualify for, that many claimants will just give up when faced with its complexity. Some may even die before they get a result. We’ll rebrand it to placate the general population and we’ll call it Personal Independence Payment (PIP). Makes it sound like we are actually helping people.

RESULT!

The DWP can implement this new policy. They have the organisation to carry it out. With their faceless upper echelon, all they have to do is gather the data and make judgements from on high. No need to meet the claimants. No need for empathy. No need for sympathy. That’s pretty cool logic if you ask me.

How are we going to get all the data from the claimants? Easy. We’ll "out source" it (another new buzz word. It means palm it off) to organisations like ATOS. They can train people in 6 weeks, who are ten deemed qualified to make judgements and write reports on people they've met only once. It won't matter what kind of disability they have, or what their personal circumstances are. We have a one-size-fits-all qualifying criteria.

Anyway, ATOS are incentivised. The more claimants that fail to qualify for PIP, the better ATOS will be regarded and rewarded.

We are present day now.
PIP is failing, as indicated in the news recently that all claimants dismissed with mental health issues must now be reassessed. The original instigators of PIP are wringing their hands claiming it was not implemented as they intended and recriminations are in the offing.

The DWP will not doubt say they were only following instructions when some of their judgements are reexamined.

As for organisations like ATOS, no, they won't be taken out and shot. However, for the many times they have misinterpreted and misrepresented the claimants they have interviewed they should hang their heads in shame.

I'm not saying the government are Nazis, or the DWP are as ruthless as the SS, or that ATOS are as craven as the Kapos. But the similarities in the modus operandi are frighteningly similar

Just for the record this is not the ranting of some raving Corbinista. Just a political middle of the road father who has no truck with extremists of any persuasion.

I'm just in the unfortunate position of watching my once confident and proud son become embroiled in a vindictive and unforgiving system that is denying him financial assistance that he never envisaged needing. This policy is destroying, both mentally and physically, the most venerable and need-worthy in or society.

I am not so naive as to expect life to be fair. Or to think nice things always happen to nice people in the end. Or even that justice and right will always prevail.

But one thing history has shown is that eventually, for all injustices committed, someone has always been found accountable and the truth eventually comes out.

Friday, 9 February 2018

tempting fate

Plot Spoiler Warning! This blog discusses a recent episode of Inside No. 9
image from "Tempting Fate" from Inside No, 9
As anyone with even a passing knowledge of this blog will know I have long been a fan of the work of The League of Gentlemen. Two of The League - Reece Shearsmith and Steve Pemberton - have in recent years created a series called Inside No. 9, which to my mind is even better than their first TV show.

In a lot of ways it's kind of like a more horrific version of Tales of the Unexpected - a lot of the shows have unexpected twists in them but there is also still a lot of their trademark dark comedy.

On a number of occasions the twist at the end of an episode has reduced me to tears - the classic episode 12 Days of Christine and the more recent Bernie Clifton's Dressing Room being amongst the shows that immediately spring to mind. When they avoid relying on shock twist endings, they can create some incredibly moving mini-plays.

Maybe it's to be expected when each episode is a self-contained half-hour playlet but unfortunately they don’t always hit the mark.

The last episode of the current series, Tempting Fate, particularly stuck in my craw. This told a story of three council contractors as they attempted to clear the flat of a dead hoarder. At one point it was revealed that one of the characters - played by Steve Pemberton - had a tragic home life, having a young, wheelchair-bound son (Charlie) with MS. This was introduced in a particularly clunky manner, with the youngest council worker mistaking it for M&S - har de har har.

Eventually a large amount of money is found in the flat, with an inevitable confrontation about who should have it. In the struggle Steve Pemberton's character says that the money is a godsend as it would "pay for Charlie's operation".

Which made me and Mrs D shout out, "WHAT OPERATION?!"

The whole thing just ended up making MS the laziest of all plot devices. It was as though they just grabbed a medical condition off the shelf and didn't look into it any further - "Oh, MS will do. It's all basically to do with wheelchairs, isn't it?"

It was so disappointing! A feeling only added to when Charlie appeared towards the end, saying "Look daddy, I can walk!"

I know that Inside No 9 didn’t set out to make a definitive portrayal of MS and I might not have noticed (or been so sensitive about it) had I not had a vested interest.

I guess it's like the worst thing your parents can ever say to you - "I'm not mad with you, just disappointed".

But a previous episode (Series 3's Empty Orchestra) featured a deaf character (and performer) who wasn't simply viewed as someone tragic to be pitied. In fact, in the final scenes of Empty Orchestra, she ended up putting her bullies in their places and even bagging her (hearing) man.

I just think it would just be nice if they could handle potentially sensitive plot and character devices with that level of thought.