We welcome back Hamish as he shares his thoughts on getting out and about with FOP.

AccessIBILITY

“Early April 2019, a couple of weeks shy of my birthday, I broke two metatarsals in my left foot. I knew in that moment, it was a life changing moment.

Before the fracture, with the assistance of my carers, I had a relatively active social life.  Going out always involved meticulous planning, I’d check to see if a venue was ‘Hamish friendly’.

Many places are suitable for wheelchairs but not necessarily my physical needs.   As my FOP journey progressed, it became apparent, in most cases ‘Disabled Accessible’ generally meant wheelchair friendly but not for those who could walk using an aid or two in my case.  This was a source of significant frustration at times.

My favourite past time was playing a round or two of indoor crazy golf – the clubs were too short, so I used the tip of my crutch to hit the ball! Ten-pin bowling was another favourite, using the slide I’d knock the ball with my crutch once I’d lined up the slide to where I wanted it to be. I’m sure anyone with FOP or a physical disability can appreciate the importance of adapting, finding our own ways to still do certain things.

I also enjoyed shooting pool – I even purchased my own cue. Instead of using the rest, I’d ‘borrow’ the hand of my carer to act as a guide – it was equally both entertaining and amusing.  I am also an avid fan of sports and went to numerous matches to cheer on Northampton rugby and Northamptonshire Steelbacks T20 cricket team.

I had not gone away be it abroad or in the UK since I lost the ability to sit on normal chairs when I was 17. With the support of a carer and my best friend Max, I was able to experience several weekend respite breaks. I would book two hotel rooms and perch on my stool in the corner at night. When I became too tired, I’d sleep on my riser, recliner armchair in the back of my van, with my carer or Max, camping out next to me.  It may not have been ideal by any means but living with FOP brings about countless challenges which require thinking outside the box.

My recovery and subsequent rehab from the fractures meant being bed bound for 6 months, and a further 3 months of physio to walk and build up my strength.  Little did we know, the world as we knew it would change forever in 2020 with the outbreak of COVID-19.  Like countless others, I was told to shield having been classed as ‘clinically most vulnerable’.

I had spent the previous 9 months recovering from the fracture, only to then go into lockdown and told to shield. This was a mentally draining time – I did not have the luxury to go out for fresh air or a walk in the park, as physically I was unable to.

It’s now 2023, and although the lockdowns have thankfully eased and there aren’t any restrictions on travelling or socialising, FOP has taken its toll. Painful bone growths have formed on the ball of my left foot which makes walking or standing troublesome.

I’ve been unable to set foot inside a supermarket or shop since the fractures.  I make a conscious effort to go out with my carers once a week, usually for a drive in my specially adapted van.

I am blessed to have my memories and the support of my wonderful family, friends and carers. The world has learnt to live with COVID, but sadly, FOP remains as big a challenge as ever for us all.  My physical lockdown is relentless, a willing mind trapped within the confinement of my body.

However, in my experience, whilst we are extremely limited physically, having an open mind and being determined to live life brings about hope, and opens up opportunities that may have been closed.”