Sunday, 23 November 2014

Day Forty-Four

1. Getting to grips with meditation...mostly at least

Today was the first day trying my new meditation technique alone. Ideally, I’d do this in the morning, first thing to set me up in the right mind set for the day. However, William has been waking at 4am ever since his health deteriorated at the start of the year. Thankfully, he plugs himself into his iPad so I don’t have to get up and entertain him but he is far too present when he is awake to enable me to clear my mind and meditate. My weekday routine is to get up, sort Wills, see him off to school and then take my time before I start my own day. At the weekend, I have to find the moments where I can and sometimes this moment doesn’t come until the children are in bed. Today I found my moment this afternoon, while Wills was at his dad’s.

There are a lot of steps to remember so it was a bit ‘clunky’ today. I was having to open my eyes to check instructions and to look at timings. I was really encouraged though as this method, ‘Integrated Amrita Meditation Technique’ given by Amma for those who have chosen her as their spiritual leader or guru, came far more naturally for me than anything else I have tried. It’s interesting to me. I found it relatively easy to empty my mind and focus on the meditation. I managed to feel energies and vibrations which was really exciting for me as I haven’t been able to experience these manifestations of meditation before. What I struggle with though is visualisation. I think, because I love words and writing and reading are by far my chosen and most comfortable way to communicate, I find that I commentate and tell myself things I should be visualising. I’ll be saying, ‘you are seeing….’ and explain all the detail of the scene to myself…and then this inner commentary interferes with me actually seeing it! I just can’t seem to stop that internal gabble, even now I am beginning to stop thoughts. Maybe once I know the routine better and don’t need to remind myself what I’m doing it will get easier to still my mind even further and see things. Or maybe I need to picture some of the things I am trying to see while not meditating so I have mental images rehearsed? I’ll find ways I hope and it is an interesting time learning something so new. And, it opens up a world of even more books and words too which makes me happy. I love the sound, intonations and vibrations of sanskrit and would love to learn and read some of the ancient words. It’s even more exciting now I can hear it properly too with my hearing aids.

2. There's a world outside your window...

While I was in Devon, I watched this Panorama programme about Ebola on BBC iPlayer.  In fact it was during the night I was awake most of the time as William’s stoma was pouring so much. Although Wills was fast asleep, being in the same room as him I was aware of how he was and couldn’t settle.

The programme follows a doctor from the UK who travels to Sierra Leone to work in an Ebola treatment centre. It showed the real human impact of Ebola, on families and children and through this mans eyes, as he witnessed it. It was absolutely heartbreaking and made me so sad seeing children alone when they were in pain and frightened. We saw a baby whose family had already died lying and dying alone. Other children are made orphans. There are just no resources. There are none of the things we take for granted. No IV fluids, no ventilators or other machines, no IV medicines. The staff try and get very sick people feeling so unwell and vomiting to sip water from syringes and eat bananas. Here, we would be able to hook up IVs and give the sickest people a complete break on life support in intensive care.

We are just so so lucky that we were born into a country where there is such a fantastic health service. We need to fight hard to save our NHS. Without them I wouldn’t have William at all. I fact, I’d have none of my children who were all born very prematurely, or even myself for that matter as I have had many a life threatening asthma attack.

Please do watch this programme. It is interesting and follows the life stories rather than the science. I just wish there was more that I could do than send a donation or buy the new Band Aid 30. I know there is a lot of criticism around that but I love Bob Geldof and really believe he does all he does with the right intentions. Live Aid was one of the memories of my youth and it opened our eyes to things we didn't really know much about or think relevant to us. Sure, those on the record could donate vast sums between them but it is about more than that. Young people love music and the people on the record and so that makes it a great medium to educate them and open their eyes to what else is going on. If there is a debate to come along side projects like this then it can educate them to that too.

3. Something Precious Inside

I haven't shared anything my novel for a while. This is my revamped chapter 1, thanks to the comments I had from sharing an earlier version on here. This is getting closer to the 'final draft' now and so this is all you'll be getting on here... If you like how it sounds you'll have to wait for me to finish and have it published. If you're really impatient or interested in it then do let me know through as I'm looking for some people to read and review it for me along the way.

Chapter 1

“Vanilla latte and a skinny lemon and poppy seed muffin? I think we need to kick this morning off with a Starbucks run if your night has been anything like  the way I hear it’s been.” Gill was standing in the doorway between my daughter, Sophie’s cubicle and Rainbow Ward’s liver and intestinal failure unit’s main bay. As she held the door open, our cosy little world was being invaded by harsh florescent lights and a symphony of bleeping drip pumps, nurse call alarms and at least four TVs blaring the CBEEBIES ‘Wake Up Hour’ theme tune a second or so out of sync with each other.
“Morning Gill,” I slurred, rubbing the burn of sudden light rush from my eyes, “Come in. Sophie’s still asleep so I’m trying to keep it calm in here.”
“Jeez Tess, will you take a look at yourself! I think you need a double espresso chaser too. In fact, make that a triple! Have you forgotten we’ve got a new kid on the block today? The new registrar? We’ll be needing our wits this morning!”  “I know, I’ve been worrying myself crazy about it all night. I mean, Jeremy might have been a prize geek but we know him and he understands the kids. I trust him. I actually feel physically sick at the thought of someone new taking over. But look at you! I can see you’re keen to make the right impression!” Gill’s chestnut hair had a tendency to hang course and frizzy but today, glossy ringlets bounced on her shoulders. She was immaculately made up and was wearing a smart floral blouse that actually looked ironed.
“Too right I am! We have to get off on the right foot with this guy. We need his respect right from the start. Trust me, I’ve seen several doctors come and go over these last eight months and one thing I’ve learned is that, if we want them to treat us as colleagues in our children’s care, we need to encourage it from the get go. Ward round is in two hours, you need to get yourself together Tess!”
Uuuurgh!” I groaned, pulling myself up from the camp bed to get some money from the little locker on the other side of Sophie’s bed.  “OK, I hear you. I’ll have a latte, thanks. Hold the muffin though.  My stomach isn’t going to wake up enough for food until at least lunch time.”
“Was it that rough a night Hun?”
“It wasn't the best. She’s been up half the night with horrendous nosebleeds. Jeremy would have been in by now and done some blood tests. I’m sure she needs a transfusion. I’m shattered! How was your night? How’s Charlie?”
“He’s absolutely fine. Quick, where’s the wood?” Gill stretched out and held onto both sides of the doorframe she was standing in front of.  “Touch wood! All we need is a nice calm and stable week and the big boss, Dr Hannah, has promised she’ll start making plans for us to get home at last.”
“Oh Gill! I’m crossing  all my fingers for you on my left hand. That half of of me wants nothing more than to see you finally take that gorgeous boy of yours home to his daddy and his sisters and see you all back together where you belong. But my selfish right side will miss you so much. What am I going to do in here without you?”
Gill first rescued me the day after Sophie and I arrived on the ward, following a terrifying five days in intensive care. I was taking all my stress out on the washing machine. It had stopped with the door jammed shut on all Sophie’s clothes. Gill walked calmly in, switched it on and off at the plug, tapped it three times on the top, pressed start and the water started swirling again.
“It’s a bit temperamental,” she explained, there’s a knack to it, like everything else round here and you’ll soon pick it all up, I promise.”
Later that evening, while I was warming up yet another insipid cauliflower cheese,  I learned that Gill had become to be quite the expert connoisseur of the full range of microwavable meals in each of the supermarkets within walking distance of the hospital.  I also discovered that she shared my addiction for syrup lattes. Our ‘Starbucks Runs’ have become legendary. Lattes to bolster us before the big ward rounds, surprise lattes, to cheer each other up after bad news, usually with cake thrown in because it would be rude not to really!  I must admit that lately, it’s been Gill treating me pretty much all of the time.
Although seven years older, Sophie is a relative newcomer to the world of intestinal failure in comparison to Charlie, who was born with a massive infection in his bowel eight months ago.  Sophie was fully initiated into the ‘TPN, or total parenteral nutrition, family just nine weeks ago when she went down to the operating theatre to get the Hickman Line, a thin white tube that delivers nutrition, electrolytes and fluids straight into her heart to be pumped around her blood stream. Like Charlie, she now has the badge of the ‘gastro kid’ on her chest where the end of her line hangs from its dressing.

Sophie may be the newest gastro kid on the ward but she sure seems set to make up for lost time. Somehow she has already managed to go through every life threatening complication associated with TPN. She has twice been back into intensive care when infections in her Hickman Line caused her entire body to shut down in shock and, four weeks ago, she went into irreversible liver failure as a direct result of the feed. I still find it impossible to believe that all of this started with a simple virus, virtually just a cold! The medical team here have been amazing. But it’s Gill who time and time again picks me up off the floor,  sometimes literally, and holds me up each day.
It’s strange really. If I had met Gill three months ago we wouldn’t have got much passed social niceties. She’s forty-six for a start,  fourteen years older than me and I tend to hang around with people a fair bit younger as a norm.  I had a Sophie-sized chunk bitten out of my career progression as an artist just when I was getting started, so I’m still at the stage of group exhibiting with recent graduates. My social life revolves around events and gigs where we gossip about the scene, who is going out, or been dumped by who, and talk about exhibitions, bands or films we’ve been to. I wouldn’t have known where to start with a proper adult like Gill. But I have never talked and and giggled this much with any of my art or uni friends and I’ve certainly never shared as much of myself with anyone as I do with her.
“Oh Tess. We won’t be for a while anyway and I promise I’ll come in and see you both loads. Come here…” I shuffled up to give Gill half the chair I was now sitting on and rested my head on her shoulder as she reached out to Sophie, still fast asleep on the bed next to us.
“Ach bless her, she looks exhausted. You both do.” Gill said, hugging me tightly.
“She’s sick Gill. I’m scared!”
“You need that transplant call Hun. This has to be your week. Wouldn’t that put the frighteners on our new registrar!”
“Oh, if only! You know, every morning I wake up wondering if this will be the day we get the call, or the day I lose her. Then every night I go to bed just thankful she has survived to the end of another day.”
“I know petal,  I know. Right! I’m going for those coffees. It’s my treat, and I’m getting you a muffin whether you want it or not.  You need it!  You’re not getting a skinny one either, you’re having a big fat double choc.”
“Fat is what I’ll be sitting around here all day drinking lattes and eating double chocolate muffins.”
“There’s nothing on you, will you look at yourself! You could eat a fair few muffins before you need to worry. Now, get freshened up, put on that red sweatshirt, let your beautiful black hair tumble down over it and slap on some of that gorgeous berry red lippy you used to wear. First impressions count remember!”

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