Personal Stories

Remembering What it is Like to Get Out

Getting Out Again

I was really looking forward to meeting my friends for the first time in 14 months; however, it wasn’t without a huge wave of anxiety. After all, I had only been out with them once in about 3 years due to the multiple hospital admissions and symptoms of superficial siderosis. We went for a meal in January 2020, just before the pandemic started and put everyone’s life on hold, but for me, things had been on hold a lot longer.

Many thoughts were running through my head, ‘How will I communicate now that I am fully deaf?’ ‘Will I be able to move from A to B without falling?’ ‘What if I see people I haven’t spoken to in a while, and they think I’m being rude because I’m not acknowledging them?’. All these thoughts were looping around in my mind, but it was something I really wanted to do.

My mum dropped me at Dan and Joe’s place to walk over to the pub near where they live. I could never have done it alone. Crossing the road and not hearing cars passing by is pretty much a recipe for disaster, but luckily my legs held up, and Dan and Joe walked with me.

Typical Welsh Weather

The weather was pretty rubbish as it usually is in Wales, grey sky, a bit of drizzle and very cold. Once Dan, Joe and I got to the pub, we sat outside at a nearby table. It was a very different atmosphere to the one that I remember, as it was all outdoors with social distancing, and mobile phone apps were used to order drinks to the table. I found it good that you could now pay by card rather than cash, so having a pocket full of loose change was now a thing of the past. I don’t drink alcohol anymore; it’s just Diet Coke or Pepsi for me these days, anything to help keep my head in the best condition that I can.


The Lads

The speech to text app was very handy, and luckily, we weren’t required to wear masks outdoors so I could lip read. It takes some getting used to lip-reading someone you haven’t spent much time with, but I got there in the end with a bit of assistance from the speech to text app. Dan was having fun with the app anyway, singing songs into such as ‘All Star’ by Smash Mouth and that really annoying tongue twister ‘How much wood could a woodchuck chuck…’. I won’t carry on as it’ll probably get stuck in your head if it already isn’t.

Moving on

Dean eventually turned up an hour late, but I couldn’t have forgotten about that as it was always the norm for him to be a late arrival. After a drink or two, we walked (albeit slowly) to the city centre, to Le Pub, a venue that I hadn’t been to since it had moved location. It was actually quite refreshing to be outdoors under a canopy with heaters, even if it was a little chilly. The boys looked after me, and my anxiety had really died down by now; I was content and comfortable. I knew that I would be once I got there, but there was always that tiny element of doubt at the back of my mind.

Going Home

After a few hours sitting in the cold chatting and laughing over some of the stupid things the speech to text app was coming up with, I sent my dad a text to pick me up. A short while later, Joe walked me over to the nearby layby to meet my dad, who had just turned up in his car. It was quite the change, as back in 2016, I was helping Joe around Download Festival, but he’s a good mate and returned the favour to make sure I was okay.

It did me a world of good to get out. I had wanted to go out with my friends for so long, and now I had actually done it. Having a rare and debilitating illness such as superficial siderosis makes most things difficult, but Dan, Joe and Dean really looked out for me and made it a great night.

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Rhys Holmes

Rhys Holmes is a feature writer at Living with Superficial Siderosis and the U.K Director of the Superficial Siderosis Research Alliance. Rhys is a former musician, data analyst, shop assistant, and childhood footballer. In his spare time, he enjoys watching his favorite football team Liverpool FC. Follow Rhys on Twitter @RhysHolmes

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