Getting My Life Back

A rare moment where my personal & professional gig-going life comes together in one blog!

Alt Text: A selfie of a white woman with long brown/blond hair, wearing red/brown rimmed glasses & a black puffa jacket with a fake fur hood.  She is outside a music venue.  Above her head is the venue’s sign which says: ‘The Mission 22nd April.’

Let’s face it, I’ve been to a special hell & back in the past two years.  I’d like to think that I was pretty resilient, but I’ve been tested mentally & physically to the max, especially around monthly treatment times.  That’s why I’m not too harsh on myself when I get ‘off’ days, you know, those days when you have to stay home & rest.  Sometimes being disabled has felt that I’ve been clinging onto life, a bit like I was scrabbling around in the dirt with my hands, trying to get a grip so that I could pull myself up.  But once I’d had the cancer diagnosis, it got way harder – now it feels like I’m at the cliff face with my legs dangling as I struggle to put one foot in front of the other.  Legs dangling, hands scrabbling, not fun.

But now I’m having less difficult days.  Slowly but surely, I’m doing more which is quite positive.  However, something happened last month when I had to really challenge myself to see if still had my adventurous streak.

I’ve always been quite a daring person.  I like to surprise people.  I love doing the opposite of what others think I should do & I love proving them wrong.  I think quite a lot of disabled people are like me in that respect because the majority of us are sick of the public’s poor perception of us.  But what’s increasingly evident is that my adventurous streak always wanes when I have bouts of severe poor health.  This is because they’ve coincided with a change in mobility levels.

The aging process speeds up when you have an impairment.  I frequently joke that I was the only kid at school who ran the 100 meters slower each year until I was so useless at PE, that I swapped this lesson for extra music & art lessons.  I didn’t walk until I was about 4 – great timing as I was just about to start at the local primary school.  I first started using a wheelchair when I was about 25/26.  I don’t exactly remember because it was a slow transition & actually quite a relief because my feet were all busted up & I was in so much pain that I was blacking out.  But of course, being a wheelchair user isn’t easy because of all the physical obstacles (I mean, what d***head invented stairs?) & people’s negative feelings about being in a wheelchair. 

But when I first started using a wheelchair, one of my disabled neighbours lent me one of her lightweight wheelchairs to use & I found this so easy to push (unlike the heavy, ill-fitting chair that had been issued by the Wheelchair Service).  I’d also saved up & bought my first electric wheelchair.  I realised that I could have my independence once again.  The wheelchair epitomises freedom & don’t let non-disabled people tell you otherwise.  When I first went out alone in my electric wheelchair, shopping for clothes on Kensington High Street, my jaws ached when I got home.  This was because I hadn’t smiled that much in a very long time!

Anyhow, I digress, back to the challenging moment. 

I’m currently finding it hard to manage my increased pain levels.  My bones were rubbish in the first place & now they’re being further obliterated by the cancer treatment.  I have my alendronic acid infusion every 6 months, but this is like torture!  Seriously, it’s like my bones are actually breaking apart the next day, along with delightful side effects such as slurring my words, my teeth killing me & having flu-like symptoms.  This lasts a full two weeks.  So what with my creaky & painful bones, I’m struggling to use my right leg & foot at the moment, which is a serious barrier.  My right leg actually works (my left leg is paralysed from the knee down) & I rely on it for all my ‘stand & transfer’ manoeuvres (a transfer is when you’re moving from bed to wheelchair, from wheelchair to sofa, etc.).  It’s a complete nightmare & I have no idea how long this leg thing will last…forever…?

I had a run of gigs at Shepherds Bush Empire in one week.  I was looking forward to this because gig-going is my favourite thing to do.  In fact, I love it so much that it’s actually my job – honestly!  22 years ago, I founded a charity called ‘Attitude is Everything’ which connects disabled people with the music & live events industries to improve access together.  It does sound like a made-up job, doesn’t it?  I can assure you that it isn’t, I set it up because I didn’t want disabled people to struggle when they’re trying to enjoy music like I did in the olden days.

Shepherds Bush Empire is my nearest wheelchair accessible venue & it’s one that I can easily walk to & back from, well let’s say roll to & from, very easily in my electric chair.  Once I’m there, the security show me round to a side door & then I’m in.  Bingo!

At the end of my little run of gigs was The Mission weekender.  They’re always storming gigs & it’s a chance to break out the teenage Goth in me – I love, love, love Wayne Hussey & The Mission.  I always see them with my best friend from school.  Unfortunately, he wasn’t well for the first night, so I made the decision to go to the gig alone.  I weighed up the pros & cons for a little bit.  In reality, I didn’t have any cons because I’d made the journey to Shepherds Bush Empire & back home again after seeing the Mystery Jets gig on the Tuesday night with another friend.  I didn’t get too tired during this gig; I could physically cope inside the venue.  There were many other pros too; my trusty old chair could still do its top speed (you have to believe the thrill & power I get when hurtling down the pavement, thrusting the joystick & seeing the people scatter before me), The Mission fans are kind & friendly; many of them have been following the band for years so I knew I’d recognise a few faces.  The security at Shepherds Bush Empire are supportive & welcoming.  The only doubt in my mind was about my leg not working & how tired I might get during the gig.

But it felt right to strike out for freedom.  What I’d enjoyed about my walk back from the Mystery Jets was being alone at night, having that space to myself, breathing in the night air, the emptying of my mind.

Because I’m disabled, these moments of being alone are rare because I spend a lot of time with people who assist me (they’re lovely, I’m not moaning about this) & I live with my boyfriend (he’s lovely, we have a great laugh living together).  But everyone needs ‘me’ time.  As a child & teenager, I spent long periods amusing myself & as an adult, I still need  regular ‘time out’ from others. 

Going to see The Mission on my own would give me the chance to prove to myself that I could still rock up at a gig, enjoy my own company, possibly have some friendly banter with strangers, & then roll back home.

I’ve had many nights staggering home or taking in London at night from the back of a cab, feeling absolutely free, feeling like the Queen of this city, feeling like it belonged to me, following the Thames to get home, criss-crossing over the bridges.

So, I charged up my chair, got my Goth gear on, gave myself a big hairdo & off I went to The Mission gig. 

Once I got to the venue, I was greeted by many beautiful human beings dressed in black, all of my age & older, & very, very visibly excited to see the band.  I recognised a few faces from the Killing Joke gig which was a week or so before.  In fact, I was wearing my Killing Joke t-shirt from that same gig.  I exchanged some friendly words with a lady who I’d spotted giving out fliers there, & now she was at The Mission giving out fliers.  She also very helpfully told me that there were still tickets left for Gary Numan, so I saw him at Wembley just after The Mission, too!  Killing Joke, Gary Numan, The Mission – yeah right, so I’m THAT old but are you all still punking it up nearly every night like me?

I quickly checked with the box office to see if it was alright ‘health & safety-wise’ to be alone at the gig in my wheelchair.  “If you’re happy, then we’re happy, & we’ll help in any way we can,” was the reply from the lady at the box office which was mightily reassuring.  Then I found the security guard who let me in.  Once inside & one sharp handbrake turn to the left, I was in the viewing area.  The accessible toilet, the bar & the merch stall were all nearby – what more does a girl need?  Naturally, I went straight to the merch stall for my first lot of banter for the night – all about previous Mission gigs, new t-shirt designs, merch in general, etc.

The gig was amazing.  There was another disabled couple on the viewing platform who were absolutely lovely & someone else offered to get me a drink.  Others around asked me if I was ok.  A couple of security guys were keeping a close eye, but they weren’t at all intrusive (one of them had the ‘Radar Key’ which opens accessible toilets but I carry my own & when questioned by security, I pull out the Radar Key with the desire to shout, “ah-ha, Sir, but I have my own,” as if we’re in some kind of crazy duel.  Or I’ve got “I’ve got the key, I’ve got the secret…” running around in my brain – only ravers of a certain age will get this!)  The couple on the viewing platform absolutely went for it when the band came on & so did I.  I was singing my heart out; their energy & adrenaline gave me energy too.  It also meant that I was able to stop other people from clambering in front of me & over me – they couldn’t get anywhere near me because I was dancing in my big, fat, sturdy chair.  To get near me would have resulted in a clonk from one of my flailing arms or crashing into my beast of a chair & coming off worse.  Ha!  What a top night I was having!

Then all too soon it was over & I found myself on the pavement in the night air.  I hung around for a bit, still dazzled by the lights & music, breathing in the scene before me of deliriously happy Mission followers.  But knowing that I was going to experience it all over again tomorrow (with my best friend), the crowd was thinning out & my leg was starting to hurt now that I wasn’t distracted by the gig, I started to make my way home.

So, I’d got over that hurdle.  Going to local gigs on my own once again.  Thank God, I’m starting to really live, I owe that to myself if nothing else.

Alt text: A selfie of a white woman with long brown/blond hair.  She’s wearing red/brown rimmed glasses, a white mask with a black & white sequinned mask on top if it, a necklace of a small back wooden cross, a black t-shirt with a red & orange flame on it & a black velvet hoodie.  She is inside the venue which has red painted walls.

Alt text: A selfie of a white woman with long brown/blond hair, wearing red/brown rimmed glasses, large silver hoop earrings & a black puffa jacket.  Behind her are trees & a couple of low-rise tower blocks, with building cranes with red & white lights, reaching up into the sky.  This is one of her journeys’ home from Shepherds Bush Empire.

Published by The Musings of Spu

I'm an Essex girl who went West to find fame and fortune. 'The Musings of Spu' is the home of all my creative output, whether that be my writing or the 'stuff' I've made.

One thought on “Getting My Life Back

  1. Thanks for sharing as always Suzanne.

    Good on you for getting out there and enjoying life. Inspiring stuff👍🙏🏾


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