Tuesday, 11 March 2014

Life on Hold….

Wills is now well and stable but yet we still face many weeks in hospital. William's bowel is currently unable to get all the nutrition he needs and so we are facing a period on TPN, total parenteral nutrition - a feed delivered straight to the heart and into the bloodstream via a catheter in the chest (Hickman or Broviac Line).  This is a relatively complex thing to do at home and the process to set it all up takes time. We are in a hospital away from home and the arrangements can't even start to be made until we are in our local 'intestinal failure/TPN centre' in London. We should have transferred there last week but William came into contact with chickenpox on the ward and so is in isolation in hospital. There were no cubicles available for transfer so we've literally spent the last 10 days in a strange situation of having our lives literally on hold, in a kind of limbo transition between being treated here for an acute situation which is now as resolved as it well be and moving to a new hospital for arrangements to start the funding applications, planning and training for home. When we so arrive in our London our lives will continue to be on hold until we finally get home for good, although we do plan to be at home for as much of the day as possible.

Having a life on hold is a strange feeling but I've been doing a bit of thinking, reading and research and it's not really that unusual in they cycle of our lives to have times when we feel that life, or at least aspects of our life are on hold. I remember travelling back home from university on a coach, watching people out of the windows going about their usual life and feeling I was drowning so much in revision and exam stress that I was never going to live what I considered to be a free and normal life again. Transitional times in our life can be relatively short. I only had a couple of months of extreme 'exam stress' and then I was free to enjoy Glastonbury and the rest of my summer and start a new stage of life doing a PhD.  A transition that has been written about quite a lot is that to widowhood. There are some overlaps here with the situation I am finding myself in right now as many 'widows and widowers in waiting' are carers for long periods of time, having to place their own lives on hold for a while before their spouse passes away and they pick up the pieces of the life they have left. Other transitionary periods include waiting to conceive for couples desperate for a baby and, indeed, pregnancy.

We've been in hospital now for over two months but the earlier stages of this didn't really feel so much like a life on hold for me as William was more unwell and there were constant tests, changes in treatment, a period with a severe chest infection/pneumonia and surgery. It is now, when he is well enough to go home but we are facing a change to the life we live there, that we are in a prolonged transitional stage. I have come across some suggestions of things that we can do to help ourselves to cope with prolonged transitions.


Bernice Neugarten is a psychologist and one of the first to study adult development and ageing. She found that many 'widows in waiting' rehearsed in their minds the life they would live as widows in preparation for the transition.  Mental Rehearsal is something I often find myself doing for things like music performances and it's pretty effective too. As a freelancer, work comes to a bit of an abrupt halt when we're in hospital, especially when it's directly following Christmas when things slow down anyway. I kind of have a blank piece of paper to fill in my working life now and I definitely think it would be a good idea for me to plan and rehearse the kind of ways I'd like to fill it.

Go to Plan B

Some transitions cause you to reshape your dreams and go to plan B. I'm a stubborn woman and don't give up on my dreams easily. Of course, there have been things I have had to abandon. I couldn't hold down a traditional 9-5, or any kind of job really, that involves me being in a specific place at specific times because I can't guarantee I'll be there. I was at the start of a new and exciting theatre project when Wills got sick this time and I've had to shelve that for a while. It certainly won't be abandoned but I do know that plan A for it isn't realistic right now so there will be an element of shift towards at least a revised plan A. Plan A.1 I guess.

Acknowledging that life is on hold

Gail Shelly writes lots of books on passages and transitions in life. I particularly like her theory that we enter a new stage in adulthood at around 45, a stage full of new opportunities. That certainly helps me replace my feelings of 'I haven't achieved enough' with excitement for the things I still have left to do. In one of her books, 'Passages in Caregiving: Turning Chaos into Confidence' Gail says that labelling what it is you are waiting for can be rewarding. It is good for us to acknowledge that our live is on hold and allow ourselves the space and emotions that brings. This is an important point for me as I am constantly trying to do the things I would usually do in life when I'm often too tired, overwhelmed, emotionally drained or all of the above to do them properly. So, I fail, feel frustrated and disappointed in myself and less able to cope in general and the cycle continues down…

Live Life As Fully As Possible

Of course, during a transition when we feel our life is on hold it is only parts of our life that are on hold. We are still alive and breathing every moment of the days we are living in this stage and need to live those as fully as possible. I have some wonderful and precious times with William when we are in hospital. We have all day to talk, make things, play and while I miss his sisters hugely, these things are there to be treasured and it's important they are. Right now, he is with his dad (we're no longer together,  how you manage an ex (and his new wife!)  amongst all of this is worthy of a blog post all of its own), the sun is out in Birmingham and we only have a few more days left here so I'm off to enjoy a little me time. There will be precious little of that when this transition is over and the rest of my life is no longer on hold….

Thursday, 6 March 2014

World Book Day 2014

We've had a tough few weeks, hence the lack of posting lately! I have a list of themes and things to write about but it can be hard sometimes to write about things when you are in the midst of dealing with them and so haven't had the chance to enjoy the time and space to process what you think and what you can take away from your experiences. Events and emotions can just come at you bang, bang, bang when you are living in the hospital and it's a vacuum in here where every little thing adds to the chaos in your mind. That's kind of how the last couple of weeks have been, with lack of sleep due to William waking up uncomfortable after surgery thrown in for good measure. Last night I managed to get away from the ward at last and am refreshed after an evening relaxing at the ever wonderful Ronald MacDonald House and a good nights sleep. What a difference that makes!

I will revisit the things we've been through as I've experienced and the new things I've learned about life and myself over the coming days and weeks but today is World Book Day and, as a writer and one who devours books, I can't ignore that on here. Wills woke disappointed not to be at school enjoying the fancy dress parades and activities but I've left him now writing his 'Top 5 Best Thomas the Tank Engine Character Guide' with the school teacher so he's feeling a little better. Wills is Thomas obsessed but has also been enjoying reading books from the Horrid Henry and Mr Majeika series. It can be hard work getting him to putt down YouTube and read a book in here but the minute he has a book in his hand, after being told he has to read one chapter, he rarely puts it down again until it's finished. He has also been writing some new Thomas stories too as well as an adventure story about him and his best friends.

I am currently writing a novel that is set in the hospital and, although my brain hasn't been up to writing the kind of prose I'd be happy sending to an agent or publisher over the last few weeks, I have scribbled down endless lists of themes to address, situations to include and characters notes. It was the biggest silver lining to the cloud we've been living under when I decided to look at it as a golden opportunity for 'research.' I know once I get back into the writing it will flow gloriously with all the wonderful groundwork I've been able to do. The book was half written but another thing I've been doing a lot of over the last couple of weeks is reading and some of the books I've read have influenced me, and the way I think I should write the book, hugely. So much that a I'm going to completely restart it.

I was kept going through first 48 hours after an operation William had last Wednesday by reading the absolutely amazing "The Shock of the Fall" by Nathan Filer. I heard about this book at the start of the year when it was nominated for, and later won, The Costa Book of the year. It's a first novel written and is a very clever story about family, loss, guilt, mourning and mental health. Nathan is a psychiatric nurse and his observation of life on the psychiatric ward and community care through the eyes of Matthew, his 19 year old protagonist.

I don't want to say anymore because it would spoil it and I couldn't recommend this book any more strongly. It is a total page turner and made me happy I was up all night with Wills to read it. This book was the one that made me rethink how I was writing my own book and, although I don't want to use the same format Nathan has used in mine, there is lots I took away about how to address some of the situations in my own story.

While The Shock of the Fall became the friend that kept me going over the last few week, previous weeks have been accompanied by the girls finding out that 'Orange is the New Black.' This is a fantastic series on Netflix about a middle class woman, Piper Chapman,  who ends up in prison in the US for a crime she committed 10 years ago. It is hugely entertaining, as well as exciting and poignant at times and I could really identify with being 'imprisoned' with people who you wouldn't normally spend so much time with out in the real world. I loved it and was gutted to reach the end of the season. I really missed these women in my life when it was over and can't want for Season 2 coming in June.

When I was googling to find out more about the series, I discovered it was based on a book, an autobiography by the real life Piper (Kerman rather than the fictional Chapman). The series is very heavily fictionalised but almost every character and situation has its routes in the real life experiences Piper Kerman writes about.

I found it fascinating to see how the series pushed these facts and the path of  'what ifs' that could have led to the fictional stories in the TV series. Once again, I found this hugely influential in helping me to think beyond the things I experience, the things I've been listing and noting over the past few weeks and how I could push the reality and come up with scenarios that will make exciting and interesting fiction that is underpinned by the facts of the world I am trying to recreate and inform people about.
I can't wait to get writing now and can't think of a better day than World Book Day to get stuck back into my book.