philly state of mind

One this day four years ago, myself and the divine Mrs D arrived in Philadelphia to attend the HU Connexion 2018 Event. That whole weekend (we flew to the USA for a WEEKEND) seems like it's from another planet. 

1. We boarded an aeroplane
2. We went to another country
3. We stayed in a hotel
4. I spent a day and a half, in a room that was filled with over 100 people from all over the world
5. Not only were these people all clinically extremely vulnerable, but nobody wore a mask
   

Madness!

I know I've spoken about this on more than one occasion the past. In fact, I spoke a little about it on a podcast that I was on recently. 

But talking about it on that episode, it hit me again how very important that short trip was.

We were in a pretty rough place at that time. It was just over a year since I'd lost my job. Since then I'd done a bit of short-term freelance work. And then promptly had the most physically and mentally debilitating relapse of my life. 

At the same point in 2017, I was going through the first of my two attempts to get PIP. I think by early 2018 I'd been turned down for the second time, so we were heading down the tribunal route. 

As well as all this,  I was getting no closer to finding meaningful work. And the month before the conference, Mrs D's employers decided that her job was actually a temporary contract. So that was that. 

The idea of going to Philadelphia had been rumbling under the surface since the start of the year - initially I was thinking about going with my Dad. 

But when we found about Mrs D's job, with everything else that was going on, we just thought sod it. Her last day at work was the Friday, and we flew out early Saturday morning.

And the whole trip gave us a massive boost. We could actually travel on our own, with a wheelchair.

Admittedly we didn't go that far while we were in Philadelphia but still. Baby steps.

Later that year we retuned to Italy (with my wheelchair) for a great holiday. I got my PIP settlement. And I got another temporary marketing contract, which helped to keep the wolf from the door.

Obviously - and perhaps most importantly - I met Kathy from FUMS and Patients Getting Paid in Philadelphia, and through her I now have a job that I love and am actually good at, which I can do from home. 

So yes. It was an important break for us. And because of that, Philly will always have a apecial place in our hearts.

up, up and away?

First off, I know there was a big one-year anniversary yesterday. This post is about something else. And I know that my privilege is that the past year has left my family and I mostly unscathed. 

Three years ago today, myself and Mrs D nervously made our way to Philadelphia for a one-and-a-half day conference. Our first time travelling with my wheelchair, and our first time in years travelling just the two of us, even now it seems mad. But it was so needed. 

December 2016: I lost my job and gain a whole mess of financial insecurity. Also at this point I was finishing the first of two failed PIP applications. Good times. 

January to June 2017: I begin engaging with the U.K.'s Kafka-esque benefits system. Dispiriting, especially when combined with applying for many jobs. I eventually got a short term marketing consultancy position. When this ended in June I ran headfirst into two back-to-back relapses, with two separate courses of steroids. As I'm recovering I have my first face-to-face PIP assessment. I think it went well. It did not, and in July my application was turned down. 

August 2017 to January 2018: I reapplied for PIP alongside applying for a number of different jobs. None of these applications were successful, and I was turned down for PIP in January 2018. We then began the appeal process. 

Around this time I got a message from Health Union about their conference in March in Philadelphia. They were offering free accommodation as well as meeting a chunk of our travel costs. For a one-and-a-half day conference. What a mad idea. Who ever thought of going to Philadelphia?

By February we'd received a number of knock backs so it seemed like we had nothing to use. Which is where we came in. 

We flew from Manchester early on Saturday morning, arriving in Philadelphia by lunchtime. A bit of sightseeing on Sunday, a full day at the conference on Monday, finishing at lunchtime on Tuesday, one last wander around, flying overnight and getting back home mid-morning on Wednesday. 

It still seems mad that we did it. But everything seemed to pick up following that short trip. 

In May I got my PIP award (and a couple of years later I reapplied and it was changed into a 10-year settlement). In Philly I met Kathy from FUMS and this obviously led to me following an entirely new career path. 

But the main thing was, it really gave us a huge boost. It was a crazily short trip, and fairly decadent. But at that point we really had nothing left to lose. 

In this case, it was a reminder that travel really can broaden our minds, and showed what we, personally, could achieve. I'd happily go back there - just as soon as I can think of an aeroplane as anything other than a high speed tube of death, crammed full of germs.

podcast editor for hire

After having over a year between jobs, I've now got another role to go alongside my photography festival work.

One of the people I met in Philadelphia last year was Kathy. Truth be told, she really took me under her wing during the conference and was just super friendly and helpful. She's also quite the potty mouth so we got along fine.

I asked her why she only had nail varnish on her middle finger. In answer she flipped me the bird and said, "F you MS".

It turned out that Kathy is also responsible for a podcast called FUMSnow and at the end of last year she said that she might be looking for a new editor. After asking what it would involve I said, "well, I could do that".

She gave me a few files to have a go at, plus the show-notes and related blog post to write. I really enjoyed doing it, taking the raw files, scrubbing them up, giving them a light audio polish and sticking them together. And she must have been impressed because she offered me the role right away.

The first episode I had a hand in was published last week.



Stevedomino. The gig-economy writ large. Will work for food.

If I can be of any assistance for anything like this, you knows where I ams!
 

writing in other places

I've been doing a bit more writing on MultipleSclerosis.net recently. Here are links to some recent posts.

The Visible Man
Obviously this was prompted by the realisation that I no longer have an invisible disability, mostly due to an increasing acceptance of the role that the wheelchair has in my life.

Yeah, yeah, yeah, I know it's just another tool to help me live my life.

Still hate the thing, obviously.

The UK National Health Service
When we were in Philadelphia, I was amazed by the questions that people asked me about the NHS. I guess it's only to be expected when the moron in charge tweets such thick-headed things as this:

So I thought I'd put them straight. And writing that article made me immensely proud!

(It was also pretty eye-opening to talk to one single parent at HUconnexion18 who said that she frequently had to make a decision about whether to pay for her MS meds or feed her children)

---

One reason for this place-holder post (as opposed to the usual high-quality, well-informed guff I normally put out) is because I'm working on a big post about my experiences of the PIP application process.

Not in any way because I'm some sort of expert (two applications submitted, two applications turned down is quite the strike rate). But it could be helpful to anyone going through it now.

life in the city can be so hard

Aside from griping about PIP (still waiting for my tribunal date), banging on about Philadelphia and HUconnexion18, I've recently been doing some really exciting work with an old friend.

He's a member of the Department of Social Services at Loughborough University and he got in touch to see if I would like to co-author an academic paper for an upcoming conference.

But wait a minute Steve, I hear you cry. What kind of Academic qualifications do you have, aside from an unwavering belief in the rightness of your opinions on music?

Well...

The conference is on DISCO and he wanted me to analyse some musical extracts as part of the paper. We've met up a few times to discuss our approach and he sent me some music.

does "independent scholar" just mean "opinionated git"?

And parts of my brain which have been dormant since I graduated with a borderline-useless degree in English and Music have woken up!

I've been analysing melodies and orchestration and putting forward my opinions about what they actually mean in conjunction with the lyrics.

It has been so cool to be working on this so I'm eternally grateful to John for getting in touch with me.

Even better, our paper has been accepted for the conference at the University of Sussex next month.

Sadly I won't be attending (these things are EXPENSIVE) but I think John will be much better at presenting our paper. I have been known to waffle, especially when nervous.

I'm hoping this will open an entirely new career for me - ideally involving lounging around and pontificating about music.

Maybe I'll eventually appear as a panel member on Front Row. Or (LIFE GOALS) as a talking head on a BBC Four music documentary!

We can but dream.

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...)
 

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!

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?