The time is now

The time is now

I am not sure why it has taken me so long to get down to writing this first sentence. I have always wanted to get the most out of life that I can, in whatever way I can, while I can. I have been threatening to start a blog for years but I always put it off it as a project for “the future” somehow maintaining the illusion that I had endless time ahead of me yet. But it seems time is in short supply now, perhaps more for me than for most. The time to write is now.

I wanted my future to be longer. I didn’t want to write out of a sense of urgency, a slave to life’s unrelenting frogmarch. For me, it was important to start writing before the opera of my life (or should that be soap opera?) reached the final act. There was so much to say. I needed Five Acts – the show must go on, and on, and on! Yet here I am, the curtain is about to rise on the final act, that proverbial lady with an elevated BMI is warming up to warble. The orchestra and the stagehands are already on overtime, the lights are overheating and extinguishing themselves one by one with a little puff. The curtain must come down sometime and of course, the show cannot go on forever. The time to write is now.

I know less about my future now than I ever did. There is little that medical science has left for me now: curative treatments are non-existent and even standard treatments have to be administered conservatively to prolong their efficacy. What I do know is that the time to write is NOW.

Yet even these jarring revelations about my deteriorating health may still not have been enough to kick-start the process but for several other recent events all of which together sounded like the universe whispering in my ear, “Do it. Do it now. The time to write is now”.

A few weeks ago, I was interviewed for two programmes commissioned for ITV and the BBC, both celebrating the 70th anniversary of the NHS through personal stories. In 1973, I became the first person ever to survive a bone marrow transplant from an unrelated donor. The transplant was pioneering and made medical history. The breakthrough would never have happened without my mother and her battle to find a cure for the primary immune deficiency I was born with and which had just killed my brother at age two and a half. The search for a donor and my miraculous survival was followed by thousands across the world thanks to blanket coverage by the UK media at the time. Being asked to take part in these programmes so many years later made me think that there might still be some interest in the story and about what has happened since.

My transplant success was the catalyst which led Shirley Nolan to start her search for a donor for her son Anthony, building on the work of my mother and ultimately leading to the establishment of the donor register which now bears his name. The power of social media was brought home to me when Anthony Nolan recently shared my Instagram post about the 45th anniversary of my transplant on their own feed. As a result, people commented online that my story was an inspiration to them and it gave them hope for their children who are having or have had transplants. I got more than one hundred likes in response to a Facebook post featuring a picture of me as a toddler with my donor. “Time to start writing #doitnow” wrote a very good friend to me that same day.

A similar message came from an ex-colleague I had not heard from in years who had been very poorly lately. She had followed my recent trip to Australia and New Zealand on Facebook from her sick bed. She touched me deeply by telling me, “you were a bit of an inspiration from afar” knowing as she did what it had taken me to get there following my most recent bout of major illness and surgery.

And finally, in the same week I was contacted out of the blue, also on Facebook, by a good friend of my mother from years ago, who worked with her and supported her throughout the time my brother and I were so sick. I am finding it very cathartic to reconnect with people who knew my mother and have first-hand accounts of what happened to me during those early years. It is part of my own process of making my peace with some of the events that have changed the course of my life.

So, universe, you tell me it is time to get writing. But it is my show and I say it’s all about quality not quantity. And WOW, what an amazing show it has been. No, wait: what an amazing show it still is, even if it has been – and still is – a bit of a melodrama at times: colourful and exciting, inconsolably sad and hysterically funny, unpredictable in the extreme, scarily and achingly painful, frightening and overwhelming. Most crucially (schmaltzy moment coming), I am lucky that my life’s script has contained an abundance of joy, love, friendship and laughter. These are my Four Elements, through which grief, pain, illness and death are somehow transformed into a determination to defy expectations, to survive against the odds, smile in the face of adversity and make this show run.
I don’t know how long the curtain calls will last, or where this all will lead – I know there is much to do; there are places yet to be travelled, people to meet and learn from, operas and shows to see. There’s a blog to write. Perhaps you may join me in making the most of it all and sucking out all the marrow of every last bit of life. There is no time to lose. The time is now….

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