Prologue

What I mean when I talk about “progress“

I really wanted to use another noun, “journey“, as my theme for this book. But hearsay (and Google) informs me that this word has fallen out of fashion. Why is this? Could it be that, for many, it has an overly earnest and saccharine sweet taste? Has it received bad press as the undesirable parlance of the out-of-touch and ‘privileged’? The interview between Oprah Winfrey and Harry and Meghan was broadcast this weekend, which I’m sure was littered with similar superlatives as well as salacious tabloid fodder.

Jodi Rempel, US-based freelance blogger says, “Don’t worry, I’m not about to go into a long-winded etymological rant of the word (journey) or make a robust case for suitable alternatives from the thesaurus“. But I worry – because I still consider myself as young and intelligent (!) and with ‘leftie’ leanings. So to disassociate myself from icky evangelism seems like a good option.

In any case, one of the many synonyms for “journey” is “progress“ which my (alter) ego is much more comfortable with. When searching Google for this word, the first page shows a “movement for the Labour Party progressives“ and “software for great digital experiences“. That seals it then, “progress“ it is!

Many things in my life have progressed over the past 10 years. I sometimes say to people that I don’t know which is changing the quickest, my Buddhist practice, my MS or my age. Let’s take these three points then – and compare them against the definition above.

One of the central Buddhist teachings, is that of ‘conditionality’. In his very pithy summary, the Buddha is attributed as stating, “This being, that becomes. This not being, that does not become. From the arising of this, that arises. From the ceasing of this, that ceases”. This seemingly straightforward summation of life becomes more and more profound the more attention that you invest in it. Many books have been written on the subject matter and this won’t be another.

My second musing is the way in which my condition of Multiple Sclerosis has shown ‘onward movement’ in the last decade. Again Google has done the work so I don’t have to!

“Multiple sclerosis is a lifelong condition that affects the brain and nerves. There are many possible symptoms of multiple sclerosis. These include tiredness, vision problems and problems with walking or balance.

On 30th December 2010, I was diagnosed with relapsing remitting MS. Several years later in November 2017, I was re-diagnosed with a ‘progressive’ form of the condition.

Finally, my age. I was 34 years old a decade ago. Physical fitness was a hobby that my brother and I shared. We completed several marathons and countless other running events. We also hiked and cycled regularly and I considered physical fitness to be a major part of my life.

On the 10 year anniversary in December, I wrote a short piece to mark the occasion…

“I am sitting in the car park of the McDonald’s. I am on my way to visit a friend for the 10th anniversary of my MS diagnosis. I feel happy and a touch emotional. It strikes me that I have everything I need to be happy.

“I have my blue badge which affords me priority parking. It is 1.5 degrees outside but I have my favourite hot chocolate here. My feet are throbbing slightly with neuropathic pain but my painkillers will kick in soon.

“I can see messages of love from friends new and old; they are commenting on my Facebook status that I wrote earlier. My eldest daughter Caitlin, “Happy 10 years of ms, what a journey, I’ll always be so proud of you xxx”. From my friend Tom, “I’m really impressed with your determination to keep going and deepening your practice in the face of the limitations you face..” And Mahasraddha, “I am full of admiration and respect for the tremendous journey which you have engaged with. Such an impressive man!” Thanks all!

The beautiful – impermanent – shadow of all four seasons have danced across my desk in the creation of this book. I have drawn from medical letters, memories of friends and family, Facebook, blog posts, diaries and old photos.

I learnt that there are three areas of my life which I hold most dear. They are my children, my Buddhist faith and my health. They are precious and priceless and require commitment, integration and a good deal of effort.

Now over to my best boys Primal Scream now who in 1991, sampled Peter Fonda from their classic track “Loaded“;

“We wanna be free, we wanna be free to do what we wanna do. And we wanna get loaded. And we wanna have a good time. And that’s what we’re gonna do. We’re gonna have a good time. We’re gonna have a party!”


Tom Llewellyn

Hello! My name is Tom Llewellyn and I’m a former long distance runner. In December 2010, I was diagnosed with relapsing remitting Multiple Sclerosis. Several years later in November 2017, I was re-diagnosed with a progressive form of the condition. I now use a walking stick to get around. I write about my journey with the condition of MS – and also of life – documented over the course of several years. Much of the subject matter is about my scars and my healing. Not forgetting Public Enemy and DJing!