Right at the centre of the thinking behind this blog is the fact that three people a day die every day in the UK waiting on the transplant list. Today, my first piece of writing is a very special one. During William’s long life journey, since being told he would need his first transplant, to where we are today, waiting for his second, we have met some absolutely amazing people! I will write more about that in a future post. As we arrived at Birmingham Children’s Hospital for William’s first transplant assessment, another family were living a very tragic chapter in their own transplant journey, just down the corridor from us in PICU or children’s intensive care. I was lucky enough to meet the wonderful Nyila and Zulf a year or so later, when I was doing a photography exhibition about transplants and organ donation. Nyila and Zulf are among the the most beautiful and stoic people I know. People like them inspire me every day and show me that it is possible to keep breathing in the destination our path in life takes us, wherever that may be.
Here is Ubaid’s story, as told to me by Nyila:
Ubaid was born full term at 38 weeks but, due to complications at birth, he became very sick. He was first operated on when he was just three days old. It was then he was diagnosed with NEC, necrotising enterocolitis, a condition that causes part or all of the intestines to literally die and rot. As a result, Ubaid had to have most of his small bowel removed and was given an illieostomy, and incision in his tummy through which the end of his remaining bowel could be bought out to allow his waste to drain.
Ubaid did not have enough bowel left to enable him to absorb sufficient nutrients and was kept alive by TPN, an intravenous feed given through a tube into his heart, containing all the nutrition, fluids and electrolytes he needed. Ubaid suffered numerous life threatening complications and infections and eventually, in December 2007 when he was just seven months old, Nyila and Zulf were told he needed a liver and small bowel transplant. He had his transplant assessment in February 2008 and the couple were able to take him home for the first time in his life and wait for the call to say organs were available for him. His life expectancy at the time was just six to eight months. Nyila was reluctant at first to even put him on the transplant waiting list, knowing that there is a shortage or organs and that this was even more acute in ethnic minority groups such as Asian and Afro Caribbean. Can you imagine what it was like for a young mother to feel that way - that she didn’t want to even list her baby son for transplant because her own community were so reluctant or apathetic to support organ donation! However, Zulf wanted to give Ubaid the chance so he was listed for transplant.
The family had a great five months at home, free of the infections that had come so close to proving fatal for Ubaid during his earlier months on TPN. During that time, they waited every single day for the phone to ring to tell them a suitable organ donor had been found, all the time knowing they were drawing ever close to the end of his predicted life expectancy. Nyila says;
“But I really didn’t want someone else's child to die. I just couldn’t get my head around it. it was heart wrenching.”
On August 18th, 2008, Ubaid went into end stage liver failure. After ten days in PICU, he was slowly slipping away and all his organs began to fail. Nyila explains;
“He left us on 28th August, 2008 in my arms at the tender age of fifteen months with his extended daily all around him. I am forever grateful for those 15 months. So many more have had less than us.”
Today, three more people, like Ubaid, have died waiting for a transplant. Today, as you are enjoying your evening and reading this blog, three families and three sets of friends are heartbroken because no one said yes to giving their loved one the gift of life in time.
Click here to sign the organ donor register and, please, tell people about Ubaid today and tomorrow at work. Please share his story and help us to prevent history from repeating itself too many more times.
2. Kaleidoscope (A very early draft of a poem)
Frozen in myriads of fractals
Crimson with green
Indigo with amber
Time held, unmoving
Even a tremble
would jolt this ordered spectacle
Stunning in perfection
Then the wind blew time
And the colours burst
Shards of broken promises
Crashing and spinning with
Jostling for their position
in the next alignment
3. Eat Pray Love
During what will forever be referred to as the ‘tantrums, tears and brandy evening’ I was challenged by my good friend to spend this time surrounding myself in positivity and abandoning books, films and TV that could be detrimental to maintaining a spiritual sense of well being. I have had Elizabeth Gilbert’s much celebrated book ‘Eat Pray Love’ on my bookshelf for years. In fact, it turns out I have had the audio book on my Kindle for a while as well and the movie is on Netflix. Yet, I hadn’t so much as picked any version up. I decided this would be a good book to start with. I haven’t finished it yet, in fact, I have only finished the first section where she is seeking comfort and pleasure in Rome and finds it predominately in the Italian language and food.
Already though, I am finding so much inspiration that I can no longer read or listen to the book without a notebook and pen at hand. I think there will be many themes and ramblings on this blog that relate back to this book. For example, I love her idea of keeping a notebook where you talk to yourself. It sounds a bit mad I know and Elizabeth acknowledges the same but when you really need huge questions answering, the kind of questions that you know deep down only you can answer, then what better than to ask yourself by writing the question for yourself and giving yourself the time, space and permission to answer. Of course, Elizabeth is a writer like myself so writing answers, even to yourself, seems the most natural way of doing it. I am going to start such a book and in it I will also write my dreams. I often wonder what they are all about and I think I am the best person to answer that too.
Elizabeth Gilbert set out on a journey to search for the answers to everything. It was the ultimate journey in self-discovery. To go to Italy to seek pleasure, India to seek spiritual enlightenment and to Bali to spend time with a toothless medicine man who ultimately reveals to her the path to inner peace and being able to love again after a messy divorce. I would love to jump on a plane to these countries, or something equally exotic, but we can’t leave the UK mainland whilst active on the transplant list and on most days at the moment I consider it a triumph if I have made it to Croydon Centre, or even to our cosy, local The Oval Tavern (definitely worth a plug here) to see friends for a drink or to listen to their band. My instinct to nest in situations like this is something I am very aware of and I have tasked a handful of close friends with the job of dragging me out, kicking and screaming, if they don’t see me often enough. This is a task I am happy for anyone to join in with.
A large proportion of my day is spent looking after William but when he is at school, and when he is in bed, I, like Elizabeth Gilbert, can take time to go on my own journey of self discovery. I wanted to explore Kaleidoscopes in my writing because that is what it feels like on the transplant waiting list. It feels like we are in the phase where all the glass beads are spinning around and they haven’t yet resettled. We don’t know when or how they will resettle. However they do, we have to remember that it will be beautiful. It always is eventually. But, for that, I have to make sure I can see all the colours and, for me, that means going on my own metaphorical ‘Eat, Pray, Love’ journey.
The comfort and pleasure bit is easy. It’s in fellowship with friends and family, it’s in sitting at my desk with a lovely pen and stationary writing, it’s in incense and coffee, brandy and Jack Daniel’s Tennesse Honey, it’s in old, worn, cosy pyjamas and bed socks, it’s in Downton Abbey and move nights with Ellie and our dear friends Ben and Jerry… It’s in so many things. Like Elizabeth Gilbert, food gives comfort too, especially soups and squashes, baked potatoes and bean casseroles, so I’m lucky it’s Autumn and I like cooking. I think I’ve succeeded in knowing what I need to do for that bit. The spiritual part will be interesting. I come from a Christian tradition and am a Christian in my heart and soul, although a lapsed church goer for a number of reasons. But I am open to the theologies and philosophies of other faiths too and what they can tell me about my own understanding of God and my own spirit, within my own tradition and belief system. I’m looking forward to exploring this some more in my reading, thinking and writing.
If you are enjoying this blog, please help fund my Three A Day: Waiting project and get some lovely postcards and an anthology, limited for only those who support and invest in the project.