Post Thirty Seven. The Invisible Ones.

My request for the band Suede – please help to make live music accessible for your disabled and/or chronically ill fans who live in permanent lockdown.

I have a request for the music industry. I would like bands to start live streaming at least one performance from each tour, as standard. Not just in times of Covid, but always.

I’m kicking off my campaign (if I can call it that – so far it’s just me screaming into the void) with the band Suede for no other reason than timing. They just happen to be the band taking up the most space in my head at the moment, because they’re who I’d next be seeing live, if I were able to.

I was a teenager in the 90’s and I was obsessed with Britpop, a British music and cultural movement that grew out of a desire to place the spotlight on British indie music over the American grunge scene. Looking back, I actually have some reservations about Britpop, not with the music, which at the time I felt had saved me from my tween self whose musical tastes were, questionable, but with the movement as a whole. I didn’t recognise it back then, but now I see the nationalistic overtones, the whole ‘Cool Britannia’ thing that was so embraced by Tony Blair and New Labour, which gives me the cringe, and the overwhelming whiteness and maleness of the scene, it doesn’t sit quite right with me anymore. So while the movement may have been, in Brett Anderson from Suede’s own words, “…a laddish, distasteful, misogynistic, nationalistic cartoon“, and I think we can agree it’s best left in the past, I am still very fond of a lot of the music from the time.

Despite my fondness for the music though, I rarely listen to it anymore, not unless I’m feeling particularly sentimental. The one exception is Suede. Suede I listen to not for the sake of nostalgia, but simply because they’re great. Their last three albums, since they reformed after splitting up, have been sensational, with their last album being, in my opinion, an absolute masterpiece. Unlike many bands who seem to get a bit lost the further away they get from their heyday, Suede, since their comeback, have been consistently strong, it could be said that they just get better with age.

My current top five albums in no particular order:

The Blue Hour, by Suede

Enter 4, by Hjaltalín

Team Dreams, by Sóley, Sin Fang & Örvar Smárason (their 2017 collaboration)

Island Intervals, by Death Vessel

Hvarf/Heim, by Sigur Rós (a compilation album)

Click on the album titles to listen to these on Spotify.

As a young teenager I’d heard of Suede, but it wasn’t until the release of their third album, Coming Up, that I really got into them, which happens to have been twenty five years ago this month, and I was sixteen years old. My friends and I had managed to obtain almost complete control over the jukebox in our high school canteen, and I still can’t listen to the song ‘Trash’ from Coming Up without flashbacks to our usual lunch table, next to the jukebox, obvs!

Despite Suede featuring heavily in the soundtrack of my teenage years, for some reason I never saw them live, and I have no idea why. I had pretty relaxed parents who were happy to let me go into Edinburgh or Glasgow, even on a school night, to go to gigs, usually at the Liquid Room or the Glasgow Barrowlands. My friends and I always got there early to be at the front of the queue to ensure we got a place right at the front by the barrier. I’ve held many a sweaty hand of various Britpop singers, and I almost always managed to get hold of one of the setlists that had been taped to the stage floor. I have so many wonderful memories of the gigs I went to in the 90’s, but none of Suede, and that’s something I really regret.

With that in mind, it perhaps wasn’t surprising that when Suede announced a tour to mark the 25th anniversary of the release of Coming Up, I excitedly booked a ticket. I’d finally get to see them live, and I’d get to relive the 90’s with the promise that they’d be performing Coming Up in full. There’s a bit of problem though… I have severe ME and I’m predominantly housebound.

So why did I do it? Because I’m addicted to my old life, the life I had before ME. The desire to do the things that make me happy never went away. All I could focus on was the idea of getting to see Suede perform the album that I first discovered them with, and my natural instincts kicked in.

I’m not completely detached from reality, I was fully aware that I may never get to use the ticket. When a situation like this arises though, I can’t help but make myself believe that a spontaneous and miraculous recovery isn’t completely out of the question, and I certainly can’t go if I don’t have a ticket. That’s how I manage to justify it.

But after the anticipation, buzz and excitement of securing a ticket, comes the depression and anxiety as I scold myself for being stupid enough to put myself through this again. Because I’ve done this before. It turns out that I have a pattern when it comes to this particular situation…

  • I see an announcement about a concert that I’d like to attend and…
  • I check when the tickets go on sale.
  • I check the dates of the concert to ensure I don’t have a hospital appointment that week.
  • I go to the venue website to check out access and look for the seating plan to find out where the wheelchair spaces are.
  • I look to see if I’ll be able to book a wheelchair space online but somewhat ironically accessible tickets are never available online (ahem, accessibly), so I email the venue to ask how I go about booking an accessible ticket and hope they reply before the tickets go on sale and sell out. *I can’t call them because speaking on the phone triggers my migraines and I already average eighteen migraine days per month.
  • I find out where the closest accessible parking to the venue is and check that I can use my Blue Badge there.
  • I find someone who can drive me and accompany me using the free companion ticket that tends to come with an accessible ticket.
  • I check the refund policy, because it’s not like I can sell a wheelchair space on Gumtree and there are always so few wheelchair spaces that I want to give someone else the chance to buy it if I can’t go.
  • If, by the time I have all the information I need (which can take a few days because this stuff is never made freely available on their website and emailing back and forth takes time) and the tickets haven’t already sold out (which has happened), I book my ticket(s).
  • I spend a long time hoping I can actually make it this time. Every time I don’t crash as badly as I think I will, or I don’t have a migraine when I usually would, I start to wonder if my ME is improving.
  • But inevitably I conclude that I won’t be able to go, so I contact the box office and either get a refund or lose the money.
  • My mental health will then suffer as my heart aches for everything I’m missing and I’ll feel increasingly resentful of all the people who have the privilege of being able to do the things they want to do.
  • I’ll tell myself to never do this again.
  • I’ll do it again, because life is just too tempting.

This pattern that I follow is driven by my longing to live my life as I did before ME, and even after seven years, letting go of that is not as easy as you might think. Saying that, if you found it difficult not being able to do the things you usually enjoy during lockdown, then you may well have an inkling of understanding. The longer it goes on doesn’t make it any easier by the way, well it hasn’t for me.

So this is exactly what I did when Suede announced their Coming Up anniversary tour. It was originally meant to be in October 2020 but Covid forced them to reschedule, which they did for April 2021, and then Covid forced another change of date, to November 2021, performing at The Usher Hall in Edinburgh on 3rd November.

I might have been the only person who was delighted by the repeated postponement of the tour, because the further away it was, the longer I would have for my miraculous recovery. Now it’s less than two months away, and I won’t be going. That’s pretty much a complete certainty.

The day of the concert will be difficult for me. I’ll have to avoid social media so I don’t see photos or mentions of the concert – deliberately isolating myself even further than I already am in order to shield myself. Then afterwards I’ll be too sad to listen to Suede for a while because it will remind me of missing the concert, and everything else that I’m missing because of this illness.

Online events don’t have to be just for lockdown.

However, there is something that Suede could do to save me, and others like me, from this cycle of emotional trauma. With every tour they go on, they could live stream one of their performances, for a fee, if they wish, I’d pay for a virtual ticket, to allow their housebound fans to participate in the live music experience.

If I knew from the beginning that attending the concert virtually was an option, it would save me from repeating my ridiculous pattern, the crushing disappointment that it always brings and the subsequent crash that my ME will suffer.

My hope is that the live stream would also be made available to tickets holders for a time after the initial event as well. This would allow those of us with energy impairments and/or fluctuating conditions time to watch it after the live stream, or in short chunks over a few days, if that’s what we need.

Importantly, I would also hope that when the band address the audience, they include those of us at home. This would give us a sense of belonging, allow us to feel included, part of the experience, and as valued as the audience that they see standing right in front of them.

Of course it won’t be the same as attending a concert in person, there’s no substitute for the energy or the atmosphere, but it’s the best doable solution that I can think of. It will go a little way at least in closing the gap between live music fans who are housebound due to disability and/or chronic illness, and the bands that they love.

What I’m proposing isn’t particularly radical, but it’s something that we all know can be done, lockdown taught us so. So now it’s just a matter of, do Suede and the music industry at large want to make their live shows accessible to housebound fans? Yes or no?

I’ve tried to make contact with Suede’s people in the hope they would offer to trial my idea on the upcoming tour, but they’re proving to be impossible to reach, or at least impossible to elicit a reply from. I tried Twitter and Facebook, and heard nothing. I emailed the manager of Suede’s fan club, The Insatiable Ones, and asked if they could help. They liked my idea and forwarded my email to the band’s management, but they didn’t respond.

I genuinely thought that my proposal might be something that Suede would consider. Last year, to compensate for the postponement of the tour, they regularly shared old live performances on YouTube. So they do seem to recognise the value of making their music accessible, but sadly it seems that this was only for the time when it primarily benefited fans who were temporarily stuck at home. When it would primarily benefit disabled fans who are permanently housebound, it seems it’s less of a priority.

“…people seem unable to acknowledge that everything they’ve found hardest about the last year is just a way of life for many of us. And now they’re “back to normal” and it feels like we’re forgotten and left behind all over again. It’s hard.

@lornamcfindy, Twitter

At the start of lockdown it was heartwarming to see how communities rallied to support their vulnerable neighbours, and how society opened up and offered online opportunities that disabled people have dreamt of for years. I’d hoped that this new more accessible society would stick around, but now that non-disabled people have decided it’s time for life to go back to ‘normal’, there’s been a noticeable shift in attitudes towards vulnerable/disabled people. This is something that I’m finding incredibly difficult to witness, traumatic even, to see the world opening back up for most people, while closing down again for disabled people. Knowing that access to such events was always possible, but that it was only done (mainly) for the benefit of non-disabled people, for the short time they needed it, really stings.

My guess as to why this is happening is that disabled people just aren’t high on non-disabled people’s radars, if at all. Unless someone is disabled themselves, or they care for a disabled family member, or they work for a disability organisation/charity, generally speaking, people don’t tend to consider disabled people.

The last concert I went to was in Reykjavík, Iceland, in December 2017. As I was planning the trip I asked in an Iceland travel based Facebook group if anyone could tell me the rough cost of a taxi from the bus terminal to the street where my Airbnb was. I made it clear that I’d been to Reykjavík many times before and I knew it was a short distance. These are the replies I got…

If the weather is good and you don’t have a lot of luggage walking is easy.

I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.

You can walk there. It’s about ten minutes.

No one considered the fact that I was asking this question for a reason. No one considered that I would need to take a taxi (for what I acknowledged to be a short distance because I’d been there before) because I am disabled. They all assumed that walking was an option, even when I’d given them a pretty big hint that it wasn’t. For the full story of this little holiday read Post Twenty Three. Wheelchair’s First Holiday.

Perhaps this ableist attitude stems from the fact that disability tends to be a foreign and scary concept for most people. They hate to think that it’s something that will ever touch them, so it’s easier to pretend it’s not there at all, but disability can happen to anyone. It’s the one minority group that anyone can join, it could happen to you tomorrow. It doesn’t matter how healthy you are, how much yoga you do, how many wellness blogs you subscribe to, how many vitamins you take, or how ‘clean’ your diet is… whether through an accident or injury, genetics or bad luck, you could become disabled one day.

Disability is not as far away from most people as they think it is, so it’s best not to pretend it’s not there. Instead, acknowledge it, welcome it, and be active in creating a more accessible world. Then if you yourself one day become disabled, you’ll have far more equal opportunities to participate in society than those who came before you.

The Social Model of Disability

The model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.

The social model helps us recognise barriers that make life harder for disabled people. Removing these barriers creates equality and offers disabled people more independence, choice and control.

SCOPE

Sadly it’s a common attitude of non-disabled people though, that disabled people have no interest in the world around them. That we aren’t well-rounded autonomous human beings with hobbies, interests and passions, just the same as non-disabled people. So they have little in the way of motivation to make the changes that would allow disabled people to fully participate in society.

The only reason I can think of why live-streaming events isn’t the norm, outside of a pandemic, is because the people who make events have simply never considered that there’s an audience. Either they genuinely don’t know that housebound people exist, or they they fall into the camp of “why would disabled people want this?”. They’ve been so well conditioned by a society that dehumanises disabled people, that they don’t realise that disabled people crave joy and variety from life as much as they do.

And perhaps that’s part of the problem. Cultural prejudice around disability means it is still too often assumed that disabled people do not actually “have a life, just like anyone else”: that they don’t have careers, relationships, interests or children.”

Frances Ryan, The Guardian

We’re lucky to live in a world in which the knowledge and technology exists to allow online access to events, so why aren’t we fully embracing it? Thanks to lockdown we all understand the value that it brings, so why wouldn’t we want to open up the world and bring joy to those who are forced to live in permanent lockdown?

I don’t know how to reach them.

While I had little luck with Suede’s management, I’m wondering if I’d have better luck with the band members themselves.

I could really do with this blog post somehow falling into the laps of Brett Anderson, Neil Codling, Simon Gilbert, Richard Oakes and/or Mat Osman. I don’t have a clue how to make contact with them though, not with the impenetrable wall that is their management standing between me and them.

So please PLEASE share the crap out of this post!!!

On the remote chance that I can make contact with Suede and they agree to trial my idea, I’m hoping I can use that as a launch pad to start a proper campaign, and have other bands/artists/musicians follow suit.

It would make me deliriously happy if this could happen in time for the Coming Up tour, but I expect it’s too late now. I believe they have a new album in the works though, so maybe then…

I’m quite sure that Suede have the power to make this happen. I can only hope that they value their invisible fans enough to be the band who lead the way in improving access to live music.

Wouldn’t that be a tremendous thing!

~

UPDATE – Friday 17th September

After publishing this post (on Tuesday 14th September) I contacted Suede’s manager directly (I managed to correctly guess his email address!) to explain my situation and I included a link to my blog. Yesterday I received a lovely reply.

It was a really encouraging email.

He likes the idea a lot and he understands how inclusive and significant it would be for the band’s disabled/housebound fans to be able to access Suede’s live shows via a live stream.

As I suspected it’s too soon to be able to make it happen for the Coming Up tour in November, but he and the band’s tour manager are discussing how they might be able to make it work for future tours. Though they can’t make any guarantees.

Overall I felt it was a really positive response.

He also commented on how well I explained my situation regarding gig-going, how well written it was, and that I got my message across incredibly well, which was very kind of him.

I’ll share any further updates if/when they happen.

~

For my personal ‘best of Suede’, click here to take you to a Spotify playlist I made recently for a friend. It’s in chronological order and includes 1-3 songs from all but one of their albums, and 2 b-sides. All of my favourites!

~

NEWS

ME Science & Research

The Guardian. UK to launch world’s largest genetic study into chronic fatigue syndrome

DeCode ME: The ME/CFS Study

Health Rising. The Cortene Drug Trial Results for ME/CFS Are In.

ME/CFS Skeptic. InTime: the results of Cortene’s CT38 trial.

Doctors With ME. Founding father of Human Genome Project joins Doctors with M.E. with leading evidence based policy expert as Honorary Fellows

ME In The News

The Guardian. We’re about to see a wave of long Covid. When will ministers take it seriously?

The Guardian. Apparently just by talking about it, I’m super-spreading long Covid

The Atlantic. Long-haulers are fighting for their future

The Times. Link between long Covid and ME could transform the lives of sufferers

General Disability & Chronic Illness

Forbes. We Need To Rethink The Penalties And Rewards Of Identifying As “Disabled”

Huff Post. Wellness Culture Is Ableism In Sheep’s Clothing

Metro. When spaces are made accessible for disabled people, everyone benefits

The Guardian. Disabled and clinically vulnerable shut out from return of live music and theatre

Post Twenty Three. Wheelchair’s First Holiday.

FYI. This is a really long post (7400-ish words). I considered splitting it in two, but it’s one story and I’d rather it be contained to one post. I know this will be hard going for those of you with ME, I always write these with our cognitive symptoms in mind, but ultimately I have to do what feels right for me. I would also like to give you a heads up that I bring up something in this post that may be upsetting for some people to read, and may be triggering to those who have experienced suicidal thoughts. I’m not writing about this for shock value, for sympathy or for pity. I simply want to be honest about my experience of living with ME, what it’s done to my mental health, and how I cope with it.

I haven’t yet shared the reason that prompted my decision to purchase a wheelchair. While my ME has been slowly deteriorating since the onset, it’s not that I had a sudden and drastic deterioration that left me with no option but to become a wheelchair user. I’m mainly house bound, and technically I guess I’m mainly bed bound, given I’m in bed for more than half the day, then I just transfer to the sofa. I think I’d accepted, and become so accustomed to this life, and my limited mobility, that it just didn’t occur to me that there was another option. It’s not even that I had previously thought about getting a wheelchair and discounted it, it honestly never crossed my mind, not once.

But then, in May last year, my favourite band, Sigur Rós, announced a series of concerts in Harpa, a stunning contemporary concert hall in Reykjavík, Iceland, between Christmas and New Year. Since I discovered Sigur Rós I had dreamed of seeing them perform in their homeland (Iceland, obviously), it’s been one of those ‘must do before I die’ things. So when I heard about these concerts of course I desperately wanted to be there. I began to wonder if I could possibly manage it, but it seemed practically impossible. The sensible bit of my brain knew I shouldn’t go, to not over-exert myself, to listen to my body, to do the wise (but depressing) thing and let it go. But then there’s the bit of my brain that is addicted to my pre-ME life, that wants to have fun, and do stuff that makes me feel happy and alive. I knew that if I decided not to go, the envy and devastation I would have felt would have impacted heavily on my mental health, which has already taken quite a battering in 2017. It was an impossible decision. Generally speaking my ME is far worse, and has much more of an impact on my life than my depression does. But when my depression has been at it’s absolute worst, there is nothing I have ever experienced that has been worse or more frightening than that. Frankly, this past year, my life has been in far more danger due to depression, than to ME. Although, saying that, I only have depression because of the life that ME has imposed on me, so it all comes back to ME in the end.

I eventually decided to put my mental health first, and make a dream come true, which, given ME has robbed me of all my dreams and goals, is something I never thought could happen anymore. As well as the concert I was also really excited about returning to Iceland. I had been five times before, and before I became ill I had even considered moving there for a while. The first time was with two friends at the end of 2013 for New Year’s Eve and I fell in love with the place. We went on a few day trips and did lots of exploring in Reykjavík. Desperate to go back I returned in September 2014 with another two friends, it was just for a long weekend in Reykjavík and was a kind of send off/celebration for my upcoming job in Antarctica. Then of course my illness took hold of me and I had to withdraw from Antarctica. With my would-have-been Antarctica departure date looming I needed a distraction, so with short notice (two weeks) I decided to go to Reykjavik for Iceland Airwaves. This is a music festival that takes place every November and I had wanted to go since my discovery of the greatness of Icelandic music (you can read more about this in my previous post Post Five. Music & Dad & ME). I had been to Iceland three times at this point but I still hadn’t seen much outside of Reykjavik, apart from some day trips, and I really wanted to explore more of the country. So, my mum and I began planning a two week holiday for June 2015. We were going to rent a car, stay in campsites and drive round the Ring Road (the road that runs around the island and connects most of the inhabited parts of the country). We had booked the car and planned our route, but as June got closer, and by this time I had been diagnosed, I realised it would probably be too much for me. So we discarded the road trip. But so I could still get an Iceland fix we went to Reykjavík for a long weekend that June instead. Before I was diagnosed, I had also arranged to go back to Iceland Airwaves in November 2015 with a friend. I did a lot of worrying in advance about how I’d manage, and while I managed less than my first Airwaves, I felt remarkably well, considering. That was my last holiday.

So this trip to Iceland for Sigur Rós was the first holiday I had planned since being diagnosed with ME. I knew it would be a bit of an experiment. My ME has deteriorated quite considerably since my last Iceland trip, so this would be a very new and unknown experience for me. I figured I would either discover that I can manage some light travelling, and it would open up more opportunities, or I would find that I was too ill to travel and to stay put in the future. It was while I was figuring out how I’d manage the practicalities of this trip, i.e getting around Reykjavík and the airports, that I first considered a wheelchair. At first I looked into renting an electric wheelchair in Reykjavík, but then that wouldn’t help me in the airports, and I really wasn’t keen on using an airport manual wheelchair, in which I would be dependent on someone else pushing me. Then I thought, if I were to buy an electric wheelchair, I could use it at home too, maybe it would help me get outdoors a bit more often. And if you’ve read my previous wheelchair posts (starting from Post Sixteen), you’ll know the rest.

Even after I had decided on the wheelchair though, and had raised the funds through crowdfunding, I still had massive doubts about the trip. I was excited, but I also felt incredibly anxious about it, and I wondered if I’d made a terrible, and expensive, mistake. I came very close to cancelling the trip on a few occasions. What sealed the deal was when the rest of the programme was announced (Sigur Rós were also curating a festival ‘Norður og Niður’ to run alongside their own concerts). There were many great acts in the programme, but there was one in particular that I was really excited about. They don’t have a band name, so it’s a bit of a mouthful, but they are three Icelandic musicians, all with successful careers as solo artists and/or in various bands, Sóley, Sin Fang and Örvar Smárason. During 2017 they collaborated together on a project in which they wrote, produced and released one new song every month, at the end of the year each of those songs would make up an album. I like their music individually and in their bands so I did anticipate that I would like their collaboration project. I was right, it’s a gorgeous, kind of melancholy, but utterly beautiful collection of songs. I also loved the concept of releasing one song per month. In what was a terribly difficult year for me, these three Icelanders gave me something to look forward to each month.

This is the beginning of the difficult bit…

I have never gone into this in any real depth, I may have hinted towards it previously, and I’ve only told a handful of people (my GP and counsellor being two of them), but I’ve yet to state it outright. Here it goes… for the last two years, I have battled with suicidal thoughts, and sometimes, it’s become more than just thoughts, I’ve made plans (and by plans, I mean DIY plans, not my Dignitas membership, which is an entirely different matter, something I’ll expand on in a later post). But, and this is important, most of the time, I don’t want to die, especially not by my own hand. It’s just that, living with ME is hard, except that’s putting it mildly, it’s hell on earth. There’s a reason why ME comes out at the bottom in quality of life studies when compared to other major illnesses (Click here to learn more). ME devastates lives, it’s destructive beyond anything a healthy person could imagine. My world is now so small and my life so limited, and I live in almost complete isolation and constant pain. Most of the time, my existence can barely be considered living. But, during a year in which my life became, at times, just too painful to bear, this music, this promise of a new track at the end of each month, was something to hold onto. That seems to put an awful lot of pressure on these musicians, which is not my intent. It’s not that I wouldn’t be here now if it wasn’t for them. If I hadn’t had their monthly musical treat to look forward to, I would have found something else. That’s how I cope with this, I’m constantly having to find something, anything, to look forward to. I force myself to find something to make this existence worth living, all in the hope that I can keep this up until science catches up, and a cure, or a treatment is found.

Anyway…

Even with this marvellous announcement, I still wasn’t sure. When I bought the two tickets for Sigur Rós (for my mum and I) I had thought that the festival events were included in the price, I was wrong (or maybe Sigur Rós could have been clearer). To see Sóley, Sin Fang and Örvar Smárason I would have to purchase a four day pass. That’s a lot of money for only one concert. Then they announced a one day pass, which was a better option of course, but, I would need to buy two, one for me, and one for my mum, who is also my carer, and I couldn’t go without her. As much as I love Sóley, Sin Fang and Örvar Smárason’s music, I couldn’t justify the cost of two day passes for just their concert. Given my ME based limitations I knew that their concert would literally be the only thing I did that day, and I couldn’t spend £150 for the two of us on top of what I’d already paid for Sigur Rós. So then, and I’m not sure what gave me the guts to do this, I’m notoriously bad at asking for help, I reached out to Örvar Smárason on Facebook and explained my situation. To my amazement, he replied to my message, and he couldn’t have been kinder. He arranged two complimentary day passes so that I could attend their concert. He didn’t have to do this, and I seriously can’t thank him enough. I would also like to mention, and thank, a very nice chap called Darren who works for Sigur Rós. I believe he runs their social media (when he’s not answering my numerous questions about accessibility). He also went out of his way to assist me and I’m pretty sure that even without Örvar’s assistance, Darren would have also made it happen. So both of them, in my opinion, are absolute stars.

So it was all decided, we were definitely going. Now that the trip was confirmed, I began planning all the other bits and pieces, and I found, to my dismay, that organising a holiday when taking a wheelchair into consideration is unbelievably stressful. There are so many obstacles, and so many questions to ask, it’s unreal. Information that should be freely available, is more often than not, not. I really had to dig, push and pretty much harass in order to get my answers. It was a pretty unpleasant and thoroughly disheartening experience. The ableism I encountered was shocking. While ME is classed as a disability under the Equality Act 2010, and I am certainly extremely disabled by my illness, I have never felt more ‘disabled’. And by that I mean, never have I felt more of a ‘second class citizen’ in my life.

Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.

One of the first enquiries I made was the cost of taxi’s in Reykjavík. On previous trips to Reykjavík, on arrival, I had always walked from the bus terminal to my accommodation, or taken the shuttle bus (no longer an option as buses are now banned from certain parts of the downtown area – which is a good thing for those who live there). This time, I knew I wouldn’t manage the walk, even with the wheelchair, as my mum would then be left with both suitcases, also, the pavements in Reykjavík might too icy for the wheelchair. In the event of icy pavements I would also have to get a taxi from our apartment to Harpa for the concerts, also a very short distance, and pre-ME, easily walkable. I’m in a Facebook group for tourists to Iceland, so I asked there. I made it clear that I’d been before, that I knew the distances I was asking about were very short, but could anyone tell me roughly how much a taxi might be. Now surely the only response to that questions is either, no response, or a helpful answer. But no. This is an example of what I got…

“If the weather is good and you don’t have a lot of luggage walking is easy.”

“I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.”

“You can walk there. It’s about ten minutes.”

Right. Not helpful. It apparently didn’t occur to these people that I was asking this question for, you know, an actual reason. I’m very open about my illness, for the sake of advocacy, but, when I write or talk about it, it’s when I choose to. I didn’t feel I should have to share my medical history to the members of this group for a simple question about the cost of taxi’s. But in this situation, to get an actual answer that was relevant to my question, I felt I had no option but to give them more information about my health than I wanted to or felt comfortable with. They had clearly made an assumption that my mobility was the same as theirs, it didn’t occur to them that maybe I had different needs than they did. It really doesn’t matter how ‘open my eyes or heart are’, that ain’t gonna cure my chronic illness. This is what ablesim looks like, and it makes my blood boil. I had many other similar encounters in this Facebook group so in the end I abandoned it as a safe place to ask questions about accessibility.

Now, the venue, Harpa. Where to start. I had expected that a contemporary concert hall, in a country known for its progressiveness and inclusiveness would be a bit better with the whole accessibility thing. Wrong. Getting information from them was like pulling teeth. In the very first email I sent them, to the box office, in which I referenced Sóley, Sin Fang and Örvar Smárason’s concert, the reply I got was this… “Is this performance suppose to be here in Harpa too?”. And that was it. Not only did they not respond to ANY of my accessibility questions, they apparently didn’t even know that this concert, for which they had already begun selling tickets/passes for, was happening in Harpa. This was the beginning of what was a mainly long, disappointing and frustrating journey with the venue. They continued to ignore my emails and only acknowledged me after I went down the route of publicly shaming them on Twitter. Even then, while they did help me out on one matter, they couldn’t, or wouldn’t, answer my questions in regards to accessibility. In the end I got the information I needed from Darren (the Sigur Rós guy).

One of the things I needed to know was where I could securely store my wheelchair during the Sigur Rós concert, which was seated. I’d need my wheelchair before and after the concert, but not during. Harpa does have a cloakroom but it isn’t staffed, it’s based on trust, which I like, but, while I was ok leaving my coat there, I was not ok about leaving my brand new £3000 electric wheelchair there. Harpa told me that there was nowhere else I could store it, so I wouldn’t be able to bring it. I refused to believe this, the building is massive, there had to be somewhere safe it could go. It was Darren who then assured me that I could bring it, and they would find somewhere for it during the concert, even if it was in the production office. I also wanted to know if there would be a wheelchair platform in the standing venue for Sóley, Sin Fang and Örvar Smárason, so I’d be able to see them. On this matter Harpa simply ignored me. Again, it was Darren who told me there would be a platform (that turned out not to be the case, but more on that later).

The communication with Harpa, or lack thereof was I think the lowest point of planning this holiday. The venue should be able to answer these questions, and it just baffles me why they wouldn’t/couldn’t. Since I graduated (from the Royal Scottish Academy of Music and Drama, if you’re interested, I studied Technical and Production Arts), and before I began working for Cyrenians (Edinburgh based homeless charity), pretty much all my jobs were in the theatre/arts/festivals industry. I’ve worked in box offices, front of house, marketing, admin, event planning and venue managing. I’ve never been in a situation where I could not, or would not, respond to an accessibility enquiry (or any enquiry for that matter), even if I didn’t have the answer to hand, I would have found it. I do wonder, after the service I received while actually there (which was good, apart from the lack of wheelchair platform, which was really bad), maybe, while they are (sometimes) equipped for disabled customers, they’re mainly just really bad when it comes to communication and customer service. Saying that, one of the lifts in the building had a chair in it, which meant not quite enough room for my wheelchair, which made that lift kind of redundant.

I had a few issues with EasyJet too in regards to my special assistance request. I was told at the time of booking that someone would contact me to get more information, such as the model of wheelchair and type of battery etc, to ensure it would be allowed on the plane. I waited, and waited, and really began to panic, what if I showed up at the airport to be told my wheelchair wasn’t allowed on the plane, what would I do then?! My efforts to contact them weren’t very successful. But I eventually got a call, less than a week before departure, and again, only after I publicly shamed them on Twitter. I’m not a fan of publicly shaming, I would never do it to an individual, but with a company with shitty customer service, sometimes it’s the only way.

Our flight was on Thursday 28th December. It was my my first time using the special assistance service at an airport, and I was pretty nervous, but I really cannot fault them. All the staff involved made for probably one of the most stress free airport experiences of my life. The special assistance guy, the EasyJet staff, security, everyone was incredibly helpful. And, importantly, for me, there was no hint of condescension or pity and they didn’t infantilise me. I was getting ‘special treatment’, but I still felt I was treated as an equal. This was also the first time I’d used my new wheelchair in such a public place, I was nervous about that too, but it was totally fine. After my bumpy experiences on the wonky pavements of Peebles, the smooth surfaces in the airport were a delight! I also found that when a crowd of people notice a wheelchair approaching, they automatically part to form a space me for me to glide through, I felt like the Queen, or Moses. I also didn’t get any funny looks, that I noticed anyway, when people saw me get up from my wheelchair and walk, which was a relief. It’s almost as though no one gave a crap about me and my wheelchair! I was able to roll right on up to the door of the aircraft where I folded up the wheelchair and put on its travel bag. It’s pretty nifty, the bag, it has long handles and allows for the wheelchair to be moved like a wheelie suitcase, using it’s own wheels. My mum and I got to board the plane first and my wheelchair was safely placed in the hold.

Oh, I almost forgot. In my last wheelchair post I’d mentioned that the wheelchair was proving difficult to fold and unfold. Despite the tutorial videos it seemed like the only way was to take the full weight of it and give it a massive shoogle, which I struggled to do given the weight of it. It turns out there’s a knack, and on my last practice before the trip I mastered it. I expect the more it got used the looser it became which made the folding and unfolding process so much easier. Phew.

It was a straightforward and boring flight, luckily I had downloaded a David Attenborough documentary about a famous dead elephant onto my iPad which kept me occupied. On arrival at Keflavík Airport we were met at the door of the aircraft by a nice man with a manual wheelchair. He wheeled me inside so we could wait in the warmth for my own wheelchair. I’m still not keen on manual wheelchairs, but I complied. Although I almost got strangled by my scarf when it got caught in one of the wheels. As the wheelchair man untangled it my mum told me the story of Isadora Duncan, the ballet dancer who died when her scarf became entangled in the wheel of a car she was riding in. I paid more attention to the dangling ends of my scarf from then on.

So that was me back in Iceland. Hooray! I then pretty much spent three days in bed. Hmm. It was definitely not the kind of holiday that I was used to. I left the apartment a total of four times. Something I constantly worry about is being judged. And this worry isn’t unfounded, I frequently have people judge and make assumptions about the state of my health based on how I look and by my activity. I’ve had people insist that I was ‘doing better’ simply because I was wearing make-up. So I can’t help but wonder if there are people in my life who think that because I went to Iceland, I must be ‘doing better’. The same people probably don’t understand the adjustments and sacrifices I had to make in order for this holiday to happen. So, to ensure no misunderstanding, I’ve provided you with a breakdown of my daily activity while in Iceland. Oh, and if you’re wondering, the only way you can know how I’m feeling, is if I tell you.

Thursday. We took the bus from the airport to the bus terminal and from there we took a taxi to the apartment. This is when we learned just how eye-wateringly expensive the taxi’s are in Reykjavík. It cost around £12 to go roughly 800m. In comparison, when I take a taxi to go to the doctor in Peebles, which is around the same distance, it costs £3.50.

Friday. The day of the Sigur Rós concert! While my mum went out exploring, and to the supermarket, I stayed in bed all day to give myself the best chance of feeling not terrible that evening. Knowing I wouldn’t mange to eat out on this holiday (I was already massively overexerting myself by being there, adding restaurants into the equation with the sensory input would have been a bad idea), and to ensure our food would be Phoebe-friendly (which means no refined carbs, no refined sugars, no refined oils, no gluten and vegan) we brought most of our own food and topped it up with fresh veg from the supermarket. After resting all day and having dinner we set out for Harpa at 7pm-ish. The pavements weren’t as icy as I anticipated so I decided to give my wheelchair its first foreign test drive. What proceeded to happen was a 300m white knuckle ride along Bergstaðastræti. I found that Reykjavik’s pavements are not so wheelchair friendly. The uneven pavements had the wheelchair veering into the road. The dropped kerbs are not dropped enough, at one point the wheelchair tipped forward almost throwing me into the road. I was close to tears by the time we reached Skólavörðustígur, where thankfully we found a taxi to take us the rest of the way. This is where my foldable wheelchair comes in very handy, it’s so easy to fold it up and pop it in the boot. Pretty much every taxi driver we encountered marvelled at it! After that stressful journey, by the time we reached Harpa I felt quite shaken, which wasn’t ideal. But we found a quiet spot and had I some time to rest and de-stress before the doors opened. Then, and I had been dreading this, it was time to find out what would happen to my wheelchair. Thankfully it was all good. There was a small room between the auditorium and the stage which could only be accessed by staff and was the perfect spot to keep my wheelchair while minimising how far I would have to walk to my seat. It went so smoothly, and the staff were so helpful, it was as if they’ve dealt with this exact situation many times before. So why the box office told me it couldn’t be done? Who the hell knows.

Now, the concert. This was my seventh Sigur Rós concert, and while they are always incredibly good live, this was by far the best I have ever heard them sound. They were just so exceptionally good. I have no idea how three people can create what they do on stage. Granted they have some backing track (on previous tours they’ve had additional musicians on stage with them, this tour has been just the three of them), but I don’t think I’ve ever seen any band work as hard as they do, especially the drummer. I mean, he can drum while playing the piano, at the same time. I can honestly say that this wasn’t just my best Sigur Rós concert, this was my best concert of all time. I’m so happy I was there. While I would have loved to stick around after the concert and soak in the atmosphere, it was time to go. I had been out for around three and a half hours, which is the longest I’ve been out, since May I think, at my mum’s birthday/fundraising party. Oh, and before we left, I saw Jarvis Cocker in the foyer, which was pretty cool.

Saturday. Again, I stayed in bed during the day while my mum went out. I had no appetite at all that day, I think I felt a lot more anxious than I’d realised about that evening’s concert, more specifically, about using a wheelchair platform for the first time. I didn’t know what the gradient of the ramp would be, so I didn’t know if my wheelchair would handle it. I also worried that I might feel on display, sitting in my wheelchair, raised above everyone else, on my own, and sticking out like a sore thumb. Anyway, we took a taxi to Harpa, and, this made me feel quite fancy, I got to queue at the VIP/Guest Pass bit of the box office! We had some time before the concert so, thanks to the guest passes, we were able to briefly explore the cordoned off areas which had some exhibits, and various other interesting and weird stuff going on, I expected nothing less from a Sigur Rós curated festival. We didn’t explore for long as I wanted to join the queue for Sóley, Sin Fang and Örvar Smárason. It would have been a right bummer if having got the free day passes to then not get access to the venue because it had reached capacity. Now, remember how I was feeling anxious about the next bit? Well, turns out I didn’t need to. There was no platform for wheelchair users. I was mightily pissed off. No equal opportunities or reasonable adjustments for the disabled in this venue! I got chatting to a woman who also planned to use the non-existent platform, and I was interested to learn from her that in the venue right next door, also standing, there was a platform. So clearly the venue had the means, and had recognised the need for it, but when it came to this particular hall, they…forgot? Thinking alike we went to the very back of the hall, in the hope we might see over everyone, that didn’t work out, all I could see were people’s behinds. I was extra glad at this point that I hadn’t paid for the two passes. I didn’t feel I could complain though, given I was there for free, and it’s not like they could have set up a platform there and then anyway. But I did expect better, someone made a bad judgement call, which resulted in disabled fans being denied the same experience as able bodied fans. Since having the wheelchair, I’m learning a lot about the world.

But on to happier things. Ultimately I was there for Sóley, Sin Fang and Örvar Smárason, and while I tend to enjoy seeing the band I’m listening too, my ears do work, so I sat back and enjoyed the music. You’ll have gathered how much this concert meant to me, and it was really really lovely. It was a shorter set than I would have liked, just six songs, but that couldn’t be helped. Again, I was delighted that I was able to be there, especially as it was their debut performance, which made it feel that bit more special. After the concert we had a little rest in the foyer and admired the view (Harpa is stunning, inside and out) while the crowds dispersed. I then spotted Örvar in the crowd, so I rolled on over to say hello and to thank him, which I was really pleased to be able to do in person. This was my last evening at Harpa and I had hoped I’d meet Darren too, to thank him for putting up with me and my ten million questions, and to put a face to the name, but it wasn’t to be.

This is kind of off topic, but, while chatting with Örvar I learned that he had previously toured with the Scottish band Belle & Sebastian, with his band Múm. Afterwards I was thinking how funny it was that Belle & Sebastian popped up in our conversation, they keep doing that. I’ve been aware of them since I was a teenager, I actually have most of their albums. But it’s only since I’ve had ME and became part of the ME community that I found out that Stuart Murdoch, the founding member of Belle & Sebastian also has ME. In fact, if it wasn’t for his ME, Belle & Sebastian wouldn’t exist. It was during his time, isolated by this illness, that he began writing songs to express what he was feeling. When his health started to improve that’s when he began to look for musicians to form a band. They formed in 1996. All these years, and I’d never known.

“To talk about ME, it’s my life story. The biggest thing that’s ever happened to me….Every song I’ve ever written is about ME.” Stuart Murdoch at an Action For ME event March 2016.

Sunday, New Years Eve. Again, I spent most of the day in bed and my mum took a day trip to see some of the sights outside of Reykjavik. I did however venture out late afternoon to meet a friend for coffee. I found a coffee shop nearby that was open (most were closed for NYE), and not wanting another anxiety inducing wheelchair experience I walked. Luckily I had brought my walking stick with me. As well as meeting my friend it was also really nice just to walk, to use my legs, albeit unsteady and weak legs. One of my favourite things to do in Reykjavik is to walk around and explore. It has some of the prettiest houses, most of them lined with corrugated iron, and painted pretty colours. So that one hour outing, with the short walk there and back was my only proper Reykjavik ‘fix’. Then of course I went back to bed and stayed there until it was time to head out for the fireworks at 11.30pm-ish. I don’t like to generalise, but, Icelanders are crazy about fireworks. You won’t find perfectly choreographed displays though, they do their own thing. They buy their own fireworks, and then they spend the night blowing them up; in their gardens, in public squares, outside the church Hallgrímskirkja, on the street, on the surface of a frozen pond… I have experienced the insanity of NYE outside Hallgrímskirkja before, but on this occasion I needed somewhere with a seat, and less crowded. So we went to Tjörnin, the frozen pond, which wasn’t far from our apartment. It was a great location to watch the fireworks from, with almost 360º views of the firework lit sky. It was so cold though, and we were both pretty exhausted, so we didn’t stay out too long. We were however treated to a continuous stream of fireworks throughout the night!

Monday. We went home. It was a fairly uneventful day, the same as Thursday but in reverse.

I’ve been home for over a month now, and I have of course had people ask me how it was, and if it was worth it, and I don’t know how to answer. It’s really hard to get excited about the good bits of the holiday, while I’m feeling so dreadfully unwell. I went on this holiday knowing, with absolute certainty that I would suffer on my return, it’s not a matter of ‘if’, it’s an undeniable fact, it will happen. Post Exertional Malaise is THE defining symptom of ME. Going off topic again, but while I’m here, the word ‘malaise’ is so misleading in the context of PEM. Malaise is defined as ‘a general feeling of discomfort’, which is not in the least bit descriptive of what I experience after I’ve over-exerted myself. PEM is a severe worsening of all my symptoms, and it’s brutal. When I think about how best to describe it I immediately think about my worst ever hangover, but combined with my worst ever flu, with the fever, the sore throat, the headache, the aching body, the overwhelming weakness and lack of strength (to the point where I cannot lift my head, my arms, my legs, my entire body), the lightheadedness. Now add a migraine to the mix, along with cognitive impairment, bladder cramps, sleep disturbance, hands that feel as though they’re on fire (Raynaud’s Disease), painful skin, painful joints, painful muscles, ice pick headaches, loss of balance, disorientation, vertigo, orthostatic intolerance and severe sensitivity to light (photophobia) and sound (hyperacusis) in which overexposure makes it feel like my brain is going to swell to the point that it’s going to burst out of my facial orifices. This maybe begins to describe how awful it is. It’s when I feel my absolute worst, and when it drags on, I wish it would kill me. It’s basically a living death, and given I can reach this point by simply washing my hair, having a conversation, or cooking a meal, of course I was going to crash (a colloquial term for PEM, payback is another one) after Iceland, and it’ll probably be a matter of months before I’m back to ‘normal’.

Last year, when I was planning this trip, I needed it to feel alive and to give myself something to look forward to. I also needed it to help me figure out my limitations. Like I said earlier, I was also treating this holiday as an experiment. Before I went, I didn’t know how I would cope while being there. But I got through what little I did by using my wheelchair when I could, I paced myself and rested between activities. I’m sure I was also, to some extent, running on adrenaline, which of course isn’t sustainable. I also didn’t know how severe, or not, my payback would be. I hoped that by making sensible choices and sacrifices my payback would be minimal, which hasn’t been the case. So while my payback has been severe, I have learned something about my limitations. If I hadn’t gone, not only would I have had some emotional fallout to deal with, I would always be left wondering if I could have managed it. Now I know.

Unbeknown to anyone else, while I was planning this trip I did have it in the back of my mind that this could be the last time I go to Iceland, or on any holiday for that matter. And based on how little I managed while there, and what I’ve experienced since I returned, I think it has confirmed it for me. If my ME continues to deteriorate, or even if I plateau at my current level of disability, I don’t think I could do it again and I don’t think I want to. I fear that I have done permanent damage to my health with this trip. Holidays are meant to leave you feeling rested and refreshed, they should not leave you feeling so unwell that you begin to compose your letter to Dignitas. But this is the basis of ME, we are punished for doing the things we love.

I also learned something that I wasn’t expecting. I thought that just being in Iceland would be enough for me, but it wasn’t. It was frustrating being in one of my favourite places, the city that I had once hoped to live in, and not be able to see it. Reykjavík was right there, being dangled in front of me, but it was out of bounds. On this occasion I had a very specific reason to be there, but there would be little point in going back to Iceland, just for the sake of being in Iceland. It seems it’s easier to cope with what I’m missing, when it’s not right in front of me. It does upset me though, if my ME doesn’t improve at all, I’ll never get to see the rest of Iceland, and that makes me feel really sad.

Saying that, however, I wanted to fulfil my dream of seeing Sigur Rós in Iceland, and I’ve done it. And for all I know these concerts could be the last they play in Iceland, I don’t know what the future holds, for the band or for me. What if I hadn’t gone, and then they split up? What if I hadn’t gone, but by their next tour my ME might have deteriorated so much that I can’t attend? It was important to me to take this opportunity, however harmful, while physically I still could, the last hurrah before ME destroys me completely.  There’s something really special about seeing a band in their homeland, and in such an intimate venue (1500 capacity, that’s small for them) and they were better than I’ve ever seen them before. That was potentially a once in a lifetime experience. I was also at the debut live performance of the music that literally kept me going last year. It meant a lot to me, to be able to go and support Sóley, Sin Fang and Örvar Smárason, as they supported me. It’s amazing that I achieved these things, and I’m SO pleased I was there.

So while I spent the majority of my time there in bed, I guess I can consider this trip a success? I met my main objectives, I managed the four things I set out to do. Although I didn’t manage the other eighteen things that I had on my wish list, had I felt well enough (in case there’s any doubt, pre-ME, I would have managed everything on my wish list, plus some). But, because of just how badly I’ve been suffering since my return, I still can’t decide if overall, it was worth it. I think, at the moment, the people who are asking are just going to have to accept my very non-committal vague non-answer, that I don’t know.  I expect, when, or if, I recover from this crash, I’ll be able to answer differently. In the meantime I’ll snuggle up in my beautiful and cosy knitted Sigur Rós blanket (Christmas present from my mum) and my wheelchair will soon be adorned with a Sigur Rós Norður og Niður patch, which will forever mark it’s first holiday, and make it the coolest wheelchair in town. I would have liked a random encounter with the band, and have them sign my wheelchair, but hey ho, we can’t have everything.

After that long read I think you deserve a treat! So here’s a link to the finished album by Sóley, Sin Fang and Örvar Smárason, Team Dreams. I hope you enjoy it as much as I do, and if you do like it, you might want to consider buying it! 

 

NEW BLOG THING!!!

At the end of each post I’m going to be sharing recent research, news, articles etc on the subject of ME, or anything related, that I think are worth reading. I haven’t posted for a while, so I have quite a few saved up.

The Independent. Time for Unrest: Why patients with ME are demanding justice.

http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html

Nature International Journal of Science. A reboot for chronic fatigue syndrome research. Research into this debilitating disease has a rocky past. Now scientists may finally be finding their footing.

https://www.nature.com/articles/d41586-017-08965-0?WT.feed_name=subjects_genetics

The Courier Mail. Australian scientists prove Chronic Fatigue Syndrome is real and have discovered a test for it. 

http://www.couriermail.com.au/technology/science/australian-scientist-prove-chronic-fatigue-syndrome-is-real-and-have-discovered-a-test-for-it/news-story/2f62ddcf2d5a625b0c1f185fc649bbf0

BBC News. I had it all – now I create a new world in a single room. As Prince’s art director, Michael Van Huffel became used to working at all times of day or night. But 10 years ago the debilitating neuroimmune condition ME left him barely able to move – since then he has had to find very different ways of making art, within the boundaries of a one-room apartment.

http://www.bbc.co.uk/news/stories-42404500#

The Independent. New Migraine Drug Hailed As ‘Incredibly Important’ Breakthrough.

http://www.independent.co.uk/life-style/health-and-families/health-news/migraine-drug-erenumab-headache-treatment-important-breakthrough-a8084181.html

Farewell – A Last Post from Anne Örtegren. Anne was a Swedish ME sufferer and advocate. She recently chose to end her life in Switzerland by Assisted Suicide. 

http://lobel.nu/anne.html

Journal of Translational Medicine. Improvement of severe Myalgic Encephalomyelitis symptoms following surgical treatment of cervical spinal stenosis.

https://link.springer.com/article/10.1186/s12967-018-1397-7

Interview with CFS/ME researcher Dr. Nancy Klimas.

https://www.cfs-me-network.com/2017/09/13/interview-nancy-klimas-cfs/

The S-Word. A blog post by Jamison Writes.

https://jamisonwrites.com/2018/01/26/the-s-word/