I am not alone

I went to my first ‘muscle cafe’ the other day – a singular name for what was a gathering of muscular dystrophy sufferers for whom muscles are a distant memory! It felt a bit like an Alcoholics Anonymous meeting as we all introduced ourselves: “Hi, my name is Ian and I haven’t had properly-working muscles for six months”. “Hi, Ian”.

It was actually a rather wonderful event (organised by the neuro-muscular team at our hospital in Bristol), and I got to meet some amazing people, some of whom have had muscular dystrophy from birth and others who, like me, developed the condition in later life. They all have experiences to share and it was good to be reminded that I am not alone – I have joined a new tribe.

Being part of an identifiable tribe is important for a sense of belonging and well-being. In truth we each belong to a multitude of tribes, a kaleidoscope of affiliations in which the colours intermingle and create unique patterns. Some of those identities have a stronger pull on our consciousness than others.

For me my identity as a Christ-follower, a father and a husband remain core distinctives which are immutable. Others that I have previously embraced such as finance professional or London cyclist (I loved being part of that tribe as it felt quite edgy, dicing with death on a daily basis) are demonstrably transient and are instead being replaced with new tribal identities such as muscular dystrophy man and occasional shepherd. As a consequence my life is taking on a different hue and I impact people around me differently.

The transition from one tribe to another is not an easy one. Ask anyone who has gone through the process of retiring from a position where they held some prominence, be it a job or a role within a team, and they will tell you it is a type of bereavement.

I used to be, indeed still am, a devotee of the English canal system. As well as enjoying traveling on our own boat, I latterly volunteered with the Canal & River Trust. It was great fun working as part of a team of like-minded people: messing about in boats and playing with ‘big-boys’ toys’ as we helped keep the canal and river around Bath clear and safe for boaters to use. Unfortunately I had to give it up after just six months as my failing muscles meant I was becoming a danger to both myself and my colleagues.

Clearing debris from a weir on the River Avon

Although that time has passed I still can’t get it out of my mind. I maintain links to my old way of life through social media links such as Instagram, but I have become an observer, like a child peering through the window of a sweet-shop at wonders that are out of reach. (I do though get to go to the team’s Christmas lunch, and I was humbled when they moved the venue solely to accommodate my accessibility needs).

Accessibility is becoming an increasing obsession. We have had to have our garden path modified to provide wheelchair-friendly access to the house and have started discussions with an architect about modifying the inside of the house too for a time when I am unable to walk.

The long and winding road from the house to the driveway

My new tribe tell me that I need to anticipate being highly disabled and put in place NOW the modifications I will need further down the line. That is the sort of advice you can take from your own tribe: they are honest discussions that encourage you to face reality and not hide your head in the sand. For someone who lived their life by the motto ‘never do today what you can put off doing until tomorrow‘ it is important advice to take on board!