Day Thirteen

1. Pause and Just Be

Today has been a really lazy day but obviously one I needed to have. I am talking all the time about this period of life as a metaphorical journey and also a journey of self-discovery for me. We’re coming up to two weeks in now and it was clearly time to take a rest. I woke up feeling yukky and shattered and decided to read for a bit while I was waiting for our weekly TPN delivery and then treat myself to a dose. That dose ended at 1.30pm!

This reminded me of one of those quotes that are shared on Facebook:

Some days are all about your dreams, hopes and visions for the future

But there are some days where life is just about putting one foot in front of the other

And that is OK.


I have modified it a little bit and I think I am going to write it out and stick it on my notice board and into my rescue box:


Some days are all about your dreams, hopes and visions for the future

But there are some days where you need to just pause and be

And that is OK


While I was having one of those 'pause and just be' days, Wills was busy at school, following up his newspaper piece yesterday by addressing everyone’s questions in a speech to his class all about his transplant, TPN and what it is like waiting for another transplant. He was open and honest and even got a bit emotional when he talked about how we had to give our beloved golden retriever, Oli, to another family because of our long hospitalisations and infection risks. He was given a cuddly dog by one of his wonderful teachers which is also called Oli and has gone to bed with him. The best thing about this Oli is that he can come with us to hospital.

2. New Life

Yesterday, I got to meet this beautiful little lady and have a lovely lunch and catch up with her parents.

They are an absolutely wonderful family and it was a fantastic to spend time talking about new life and all the endless hopes and possibilities that brings.  Hayley became pregnant at around the time Wills became unwell as the start of the year so we have been sharing parallel, but very different journeys. In fact, at the time we were waiting for the difficult and complicated decision to be made about whether or not the time was right for Wills to be re-listed for transplant, follows by what organs he should be listed for, Hayley and Matt were waiting for Beatrice to make her arrival into the world. She was far too cosy in the womb and so that day came a good while after her due date. Hayley and I often touched base on Facebook and wondered who would be first to get what we were waiting for.

As we were talking, we discovered our journeys were not that different at all really. I think waiting for a transplant is a lot like being pregnant. You have a packed suitcase in the hallway which, through not needed all the way through pregnancy, is very much the case in the last few weeks. Both, of course, are journeys towards new life and both have some fears and uncertainties, especially for the first time mum. In both, you spend a lot of time looking forward to the life that is ahead and all the wonderful things you will do. I think another key thing is that you never really get the journey out of your mind. I found it was the same in all my pregnancies and waiting for transplant both these times. Sure, I can get on with other things and I am not always thinking about the phone ringing and about what will happen when it does, but it is certainly there somewhere lurking in my mind all the time, just as my endless hopes and possibilities for my new baby, along with the fears about the birth itself.

3. Eat Pray Love - the end, and start of the journey 

I have finished Eat Pray Love and I’m a bit gutted to tell the truth. I feel like I have lost a friend who was on this journey with me, advising me on how to bolster myself with pleasurable treats, introducing me to new ideas about Spirituality and feeling the presence of my God, helping me in finding me a guru of my own and, in the final chapter set in Bali, helping me with some ideas on how to balance all of this. It is funny that I have had this book on my shelf and kindle for so long but never read it. It feels like I was meant to read it now. Had I have read it at any other time it would simply have been a book I enjoyed, was marginally inspired by and would have clocked some of the ideas at the back of my brain to think about again another time….and probably never got around to them a second time. Instead, I have so many ideas that I know I will share and refer to many times here in the coming weeks and months, if our journey takes that long.

In one of closing chapters, Elizabeth Gilbert looks back in her time in lone, silent retreat on a Balinese beach at a difficult time in her life, a year before she started the year long journey of healing and self-discovery. There was a lot for me in this chapter and I’ll leave some for another day. She tells how a central yogic idea is that the pain in human life is, for the most part, caused by words.

“I’m stressed, I’m scared, I’m lonely…” All of these become mantras and become a monument to them. This idea takes me right back to the night of ‘tantrums, tears and brandy,’ exactly two weeks ago tonight. My friend is a wise to these kind of ideas and was telling me just that,

“You keep saying you’re stressed, you keep saying this is hard for you….well, guess what, you keep saying these things and that is exactly what you are going to keep feeling. You carry on watching things like Eastenders and surrounding yourself in negativity and what can you expect to feel and experience? Surround yourself with encouraging and inspirational books and films and things that will make you feel positive.”

This is what caused hurt cross words, “What do you know about what I’m going through? How can you say these things, why would you say this to me tonight of all nights when I’m feeling so crap about everything.” I felt let down by one of my best friends, especially as he then left and made me feel as though he had just abandoned me feeling as low as I ever feel really. If you read my earlier account of this story, you will know that he did return…with brandy and we had a good long chat long into the night.

That night for me, is a bit like the night when Elizabeth Gilbert falls to the floor in tears and asks God to help her in her deepest hour of despair. But I can now see, that it was also like her retreat on the beach.  She talks of how the yogis say we have to stop talking, stop those mantras to be able to strip away the power of those words. I was alone in my room and stopped talking. I was crying so much I felt I was suffocating but it wasn’t the tears suffocating me, it was the words. On Elizabeth’s beach, she talked to God in meditation and He asked her, “What gives you sorrow?” and she answered. Then, “What gives you grief, anger, shame” To each question, she poured out her response. It was the same for me, in my silent tears I poured out to myself all the things I was stressed about, scared about, feeling lonely in… and then, I stopped crying and thought about what my friend had said. I searched my bookshelf for the kind of books he suggested, and found Eat Pray Love. I began reading it and got to the bathroom scene, describing just how I felt and have shared Elizabeth’s journey ever since, jotting down ideas, thoughts and ideas in a notebook as I go. We are parting company now but I have so much to take with me. I have a guidebook really, and a small pile and long list of new books to read.

As for those mantras, well the yogis say that we make our own joy too. I am creating replacement mantras; 'It's going to be OK, we can do this, this is the right thing to do...' And guess what, it works! I'm also learning meditation, yoga and how to find and enjoy silence (which I've avoided all my life, always falling to sleep with something on) - but that's for another day.



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