A Tilly Moment while living with ME - Sitting On A Bunch Of Keys

ME is Myalgic Encephalomyelitis

PEM is Post Exertional Malaise

I had packed the car ready for the two-hour journey for my son to have treatment. I have 101 things to say about that but will leave that for another day. Going anywhere for my son Angus, is like getting ready for the Olympics, so much training has to be done in order to do an event and should be an Paralympics sport as a ME triathlon event. Event 1: getting out of bed Event 2: dressing Event 3: travelling in wheelchair of a distance of 100 meters, not self-propelled but pushed.

It sounds far-fetched and when I explain about this to any medical professional, it is met with utter disbelief and lack of understanding. How can simple movements; innocuous as they are for any ill person, have such detrimental effects that it takes weeks, months or never to recover from. The science is there but is complex and too much money is to be made from “Cognitive Therapies” to ever look at the truth.

The only problem with those who have ME entering an event is that they may never recover from even the training. You think I am over exaggerating, sadly I’m not. Look at the overtraining of the Olympians and you will find ME symptoms. In fact, there was a paper that showed the similarities, there is also a paper that explains PEM when doing a hand gripping test. Fluff, I broke my promise - to save the science for another day. Back to the event of the Key sitting.

Angus had struggled to wake that morning and this alone in enough to make the next week a bad week for him. He knew the importance of the tests and treatments so tried not to moan too much. I had to help him get dressed; he finds this so hard to accept. For any 14-year-old privacy and dignity are keenly felt and how do you honour that when he is so incapacitated on some days? The physical exhaustion was taking his ability to be mentally alert and is the first sign of him reaching the over training state and I knew we were in for a quiet drive. My heart sank to my boots and it took all I had to pull those bootstraps up. But pull them up I did, with my stiff upper lip.

You know that dreaded question about who you would invite to a dinner party - alive or dead, well very often at these times I think a lot about this. Among my invited guests would be an alert Angus. You see he can, at the right time of day and when he is not suffering PEM, be full of conversation, asking questions that only a quantum physicist could answer; like what Dark Matter is and how did the big bang theory start. I normally retort with who wrote the big bang theory for the TV series. Only I have to quickly go on my phone and find out their names as I’m not good at remembering names “Chuck Lorre and Bill Prady”, I respond. We both giggle; which is not good for Angus and this pushes him deeper into PEM, due to laughing being like a physical workout and his aerobic capacity reached. There is research to prove that laughing can be part of your exercise regime – I kid you not.

I have my own way of explaining complex matters which Angus finds both funny and exasperating. I tend to break them down to my level of thinking and use everyday objects I’m familiar with. So here goes for a Tilly Moment explanation of the big bang theory (not the program).

In a dark room, void of all matter I flack my duster which causes a bang - we have particles and static electric - the beginning of life starts. It takes a few minutes for his stunned silence to explode with his indignation of “you cannot be serious mum”. The joy of it has to be experienced at least once in your life; seeing someone so depleted in ability and suffering, to still be able to laugh and put a good forceful counter argument together, of how wrong you are, is so delicious. However, the guilt after the event is very hard to cope with and it is Angus that then pulls my bootstraps up and reminds me, it is not my fault.  

On our 2-hour journey we normally stop for something to eat, another simple pleasure that most people take for granted.  A break from the movement, cars flashing by and the rolling countryside that makes it so difficult for his body and brain to cope. He can’t get out of the car so a drive through is the only option. Those few minutes have become precious to me, a few seconds of normal life and to glimpse at the growing understanding of the complexity of the life my son now has. I don’t think anyone could be prouder than I am on these journeys, even if he won the Olympics or world events, I don’t think I would feel the way I do on those few precious moments. To know and truly appreciate the complexities of ME, you have to live through it to understand why I am so dam proud of him and why this young lad is my ME hero of epic proportions.

When we arrive at the centre, we all eagerly await for him to recover enough from the journey for his banter to start. His unfolding personality and his humour that brightens up their day is another rare joy that we want more of. We can all see the incremental improvements and with just a blood test to go we then make our way out to start the journey back home. This is one of the handful of times my son in the last 7 years has had outside his home. There are no charities that showcase his illness by sending him to swim with dolphins or to theme parks. No personalities that want to go on catch phrase to support my son in any way. He has no elevating carefree times, just an expanse of time like ground hog day, where the only thing that changes is his age - going from child to young man in the same state.

Navigating the doors with his wheelchair we treat the journey out of the building and into the car like a slalom, which I am happy to report I am getting better at. Time trials next. He has to sit for a few minutes before he attempts to get in the car; because we have laughed so much his body goes into a whirlwind of refusing to do anything but keeping his world dizzy and crippled with chest pain.

While he summons up the determination to move again, I put the bags in the backseat and busy myself so he can take the time he needs. I have to wait for him to move trying to engage with him at this point puts him under pressure to do things against his bodies better judgment and causes more problems later on. When he has got himself in the seat of the car, I pack and lift the wheelchair in the back and tie it down. As yet I have been unable to get a blue badge; again for 101 reasons but mostly because just trying to get proper healthcare for him is like taking a Mensa test while doing downhill slalom at speed. I have found I have needed a fully operational office and know a system that is as fragmented and hidden as Dark Matter. Getting a wheelchair in a car in a normal parking spot is difficult, two herniated discs prove that.  I then proceed to find the keys that I have put in the endless pit of doom I call my handbag. No keys. I know I’ll empty it onto the backseat of the car. I find everything I have lost in the last 6+ months much to the amusement of Angus. But no car Keys. It’s not as though they are easy to lose either for the love of plucked feathers where are they.  I must have put them on the folded seat in the back of the car while putting wheelchair in? No keys near the wheelchair? No keys, In the bags, they may have dropped in there? No keys.

We start to giggle as I look all around embarrassed, in and out of the car using my phone as a torch. Taking my own advice that I give to others; I start to think and visualise what I had done since unlocking the car. Where did I put the keys? Did I definitely unlock the car; self-doubt creeps in. Could I have left them in the building? By this time, we had everyone looking for them. I eventually asked Angus to get out of the seat so that I could look under the seat to see; in a vein hope, if I had dropped them there. Knowing this would cause him more physical problems I apologised and felt so guilty. However, there on the seat were the keys. “How could you not feel them” I asked? It’s not like there was just one key, there was a pile of them. We giggled about his insensitive behind and remembered when he forgot the chocolate, I had brought him one day that he sat on and which melted and made such a mess.

The elation of the everyday is a short-lived joy but one that I hope, in time, we will have more of without the PEM. For readers that do not know the ramifications of ME and PEM probably do not appreciate what a day out like this means to me and Angus. Angus has been 95% bedbound for the last 6 years and ill and house bound for 7. The next morning, he could not wake until 11.30 and it took him until 1.30 to be able to speak to me. His lips looked as if he had gone in the dessert with no water for days and the pain was painfully written on his face. He asked me to leave him, to let him recover he needs solitude, quiet and no interaction.

Living through these times is the hardest to cope with for me. This is compounded knowing what my other two children were doing at his age. For Angus like all athletes it is part of his discipline and the price he has to pay. Unlike athletes he has no one patting him on the back saying he is amazing.  The feeling of inadequacy deepens for him. His bodies inability to live frustrates him beyond any endurance training.

This enforced solitude hurts beyond any words I have found or any analogies to equate it to. It takes all our strength of character to get through these dark times and he manages it better than me.

It can take weeks or months for his body to ease the grip it has on him and we both know from experience it may never come back. With the new treatment it fades in just over 2 weeks and back to the normal pain and difficulties that most of us would find intolerable, that he has had to learnt to accept as his new normal. We get ready for the next outing and one day; soon I hope, we will be going out to something he would like to do instead of doing something that he needs to do.

Like the opening of those glorious spring flowers now popping their heads out in the bitter wind, he starts his conversations and my heart leaps with uncontrolled joy on the inside and a loving smile on the outside.

The banter of a mother and son can be heard once again. The subject of my inability to keep safe hold of keys and his inability to feel those keys while sitting on them becomes a verbal tug of war and one of those family anecdotes you keep hold of and love the retelling of and long may that continue.

 

Needles in a Haystack

They are looking for tinny needles in a ravaged haystack! Jostling for funding making claim and counter claims, while people struggle to gain some sort of life. I thought to myself as I plunged the toilet brush down and around the u-bend, giving the toilet another good dowsing of cleaner.

This is defiantly going to be a defining Tilly Moment, I smile to myself. I took a few moments to watch the vortex suck the cleaner away. It’s like needles in a haystack on a farmyard of disgruntled animals, I considered with the loo brush suspended in thought. There are a lot of fluffy ducks; I chuckled as I attacked the floor with gusto, a Cockrill, a grumpy donkey that is flogged for being slow. A picture of an idyllic scene popped in my head as the idea gained momentum. Where there are animals, there is normally a lot of… well stinky manure to clean; that’s the story of my life I shruged as I turn on the shower with my determined furrowed brow. I pull up my rubber gloves.

This analogy sums up our knowledge of ME/CFS, Fibromyalgia, MS, coeliac and Alzheimer’s, I continued thinking as I rammed the double duvet in washing in the machine. The salesman had said it would take a king size duvet, but it don’t, frustration started to set in, coupled with my anger, I decided the best cause of action was to sit and write.

If you take the haystack as the central nervous system with the many complex issues hidden inside, that haystack contained within a farmyard (the body of the patient) with many animals (cells, organs, glands and limbs) around it, that are being damaged by ME/CFS (the needles). Even though it has been proven beyond any doubt the needles are there, not everyone accepts this – they cannot see/find the needles, so dismiss the damage being done, choosing to impart the blame to all sorts of behavioural disorders. I purpose it’s not their fault? They don’t appear to possess the intelligence to understand we still do not know all there is to know about the human body. I sip the hot coffee and think. Perhaps they are like the pre-Socratic philosophers who; bless them, believed that the world was flat. Philosophers are full of barmy ideas, but you cannot reason with them, they are all knowing.
Unfortunately the people that have proven the needles exist don’t know what the needles are made from, or how to find them. This means they cannot find the right magnet to locate or get rid of the needles before long-term damage is done.

The poor farmer (the brain or in our case Angus) has been running around shouting about the danger, but no one has been listening. His animals are being hurt (animals being the organs, glands and limbs) are in pain as the needles surge through his/their body. I hold the steamer in mid-air as I once again try to get rid of the toffee on the cooker. I think the Philosophers are barmy, I giggle as I start to write my outline of a story. Here I am thinking in terms of sheep and pigs as though it would make ME more understandable, well it makes it more fun, so I make a coffee and give the story my full attention.

The farmer, I thought needs all of his animals to be fit and healthy, as they make up the ecosystem which makes the farmer’s beautiful and diverse farm. But the longer this situation carries on the more dishevelled his haystack becomes, no matter how hard he tries to rebuild his haystack, another wind comes and blows it down. The animals then are left to forage around picking up bits of hay, and are then in danger of finding the tinny needles and consume them or roll around in them. No graphic illustration needed of what could happen to the animals.

Now the Mother of the farmer has being witnessing his plight, and has watched over a long period, helping as much as she can. She understands that the best thing for the farmer and his animals, is that a huge magnet, but knows the right one has yet to be found or made. Maintenance is the only option open to her for now.
She constantly runs around all the people she can think of to find out how and when the winds will come and bring yet more needles. Some dismiss her and don’t understand about the needles and the winds, which she is surprised about. The concept of winds carrying needles are not new – coughs and sneezes spread diseases.

The wind however is like a swirl of nature that hits at unreasonable times and by the time the disbelieving people come and see the farm; her farmer son has cleared up and hidden the damage. He is a very proud and hardworking farmer, which loves his ecosystem and wants it to work properly. He wants everyone to see the beauty of his farm and not the chaos. His ecosystem runs around plugging gaps as best they can, but they are fighting a loosing battle.

For now the farmers mother has put a huge cover over the haystack, she knows it’s not strong enough if the winds come down again, she knows the animals will nest, pull at and rummage through the haystack, but it is the best she can do for now. The ecosystem shows its determination, but how long can this now flimsy covering contain those sharp implements of destruction? She also knows the cover keeps the haystack dry and brittle and at any moment could burn out! Then how would they be able to sustain the farm animals? She has taken the farmer inside the farmhouse for a rest. But the farmer is all forlorn without his farm and the friends that help him to maintain it all. His mind wont rest, he needs to get on.

People come and go with their new brooms and sweep, taking all the good hay away with them. She shoos them away, but they come back with bigger brooms. She is a strong and determined Mother but that does not bode well to the people who still believe the world is flat and that, positive thought techniques is the only thing that could possibly drive a body to wellness.
At last it’s time to put the animals away for the night and the farmer and his mother start to run around the farm trying to catch chickens, the three Billy goats gruff, geese, fluffy and the not so fluffy ducks, find and catch the errant pig, convince the stubborn donkey it’s time to go in its stable and cuddle daisy the cow. They fall in a heap and laugh about their topsy turvy days. They dream separately for a while of the farm they know they could have.

When  the farmyard falls quiet and the farmer is asleep at last, the farmers mother goes out to the haystack and has a closer look, ties down, as best she can the flimsy covering. Sweeps the debris and pushes it under, hoping it will be contained and out of harm’s way. She walks slowly to the hill near the duck pond; her favourite spot. Her faithful dogs by her side, she starts to wonder at the magic the farm holds, as the sun sinks on another exhausting day, where the animals have ran rampant through the haystack.

She reflects on when they found a beautiful butterfly struggling to fly in the wind. How they both giggled with joy when they caught it, and put it in the huge greenhouse full of plants so that it could be free to fly without the winds hindrance. How it danced and bobbed around on the warm breeze of the ventilation fans. She hopes they will be able to see it tomorrow. But you can never tell with butterflies, fleeting beauties as they are. Perhaps she can draw one. She looks across the sky to see the stars and the silvery moon, there are a lot of things to marvel at and a lot of people that will never take the time to see what happens to be in-front of them. She hoped that she was not one of those people.

We had once been told that the world was flat and if we set sail we would drop off the end, and look how that ended, she smiled to herself. What if we just took the word of those people who said our world was flat? She remembered she had been told that infants didn’t feel pain when they teethed, and that nappy rash was most defiantly not caused by the infant teething, when it was so clearly the cause, she started to giggle. Scientists said it was impossible that Bees could fly, due to the aerodynamics of their shape, but they do. ‘I love honey’, the farmer’s mother laughed to herself. ‘Sometimes’ she whispered out loud, ‘we see and we don’t look, we hear but we don’t listen, we think we know, but simply, we don’t understand.’

Most people choose not to listen to her, for she is just the farmer’s mother, and no one will listen to her farmer son, as he is considered too young to know what the world is about. Worst of all, some think he would rather have a dishevelled farm with no ecosystem. How little some intelligent people want to understand, or open their mind to. But as always there is money to be made in muck. She sighed and her shoulders sagged.

She had read that Katerina Netolicka, a Prada Model, died from working out too much, she was only 26. Rowing as hard as he could didn’t do Andrew Marr any good either, and that Henry Worsley died after developing a serious gut infection, when he had pushed his body to the point of no return, he was only 55. He thought he just needed to rest and recoup. Why is it that we think we can push our bodies so hard with no detrimental effects? She mutters as she looks across at the purple huge that covers the slumbering farm, they don’t see the chaos because they don’t look for it, they can just deny it happens, because we all cover it up.

She looked out over the flat land with its shades of purple darkness and up to the moon, now plump and round in the sky, if only they lifted their chins and really looked at that the silvery moon, they would understand that this world is round, full and slightly surreal, and that’s ok! If only they could offer a blanket to keep her warm, so that she may enjoy the moon and not fight the cold of despair, it would be a help.


Change what you can, and learn to live with what is left, she softly said to herself.

Prof Julia Newman has found some very interesting needles

https://www.youtube.com/watch?v=0UFTngBp7ek

And here with Simon Ellis they give a good understanding to the full round picture emerging of the complexities of ME.

https://www.youtube.com/watch?v=auFEYiDrJts

They need all our support and encouragement! One day I feel sure, they will come up with an answer for us. A day where we can go to a doctor and feel confident they will understand, and do no more harm to us!

HOW DO YOU LIKE YOUR EGGS, FRIED OR POACHED?

I wrote this short story after a couple of conversations I had with family, friends and with a lady waiting in a doctors surgery. That chance meeting - fleeting though it may have been, thought provoking most definitely, made me smile and keeps me smiling. 

I hope this story does that for you too.

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"Now there are some things you just have to learn to live with, Esmay my girl!” I told myself as I did a double take at my reflection in the mirror – I was bemused by my altered shape. A mound of clothes lay on the bed, I’d tried the whole of my wardrobe on.

The very attractive surgeon had given me perfect poached egg boobs that suited my hips, and made me look in proportion. I’d taken a bit of convincing, the double mastectomy wouldn’t make much difference to me really I had thought. How wrong I was. Clothes flattered my shape now. It was pleasingly different, and I was glad I had taken his thoughtful advice. Was it all worth it at the age of sixty though? Soon to be wrinkled up, and too decrepit to move, let alone strut my stuff. I laugh at my own silliness as I strike poses in the mirror.  Was I sixteen or sixty, I sometimes wondered.

Was it God or my parent’s genes that had given me fried eggs as boobs, no it was Mother Nature having a laugh! Nature had a habit of rubbing salt into sore wounds. I would watch as they filled out when I was breast feeding to a lovely D cup, I liked Dave’s face when he saw them. I was always hopeful they would stay that way, but they deflated like balloons afterwards, looking not dissimilar to tassels on a stripper. For months afterwards I would mope around and my ego and libido would be as flat as my chest.

Now the artificial ones protruded from my body, disconnected, and I wondered if they would ever feel part of me. They looked good though, all dressed up and perky. That salt rubbed a little deeper when I think how Dave would have liked the look of them too. This new life of having a body shape I liked, without a husband to show it off to was just plain sad. He didn’t like the idea of me getting implants, but it’s now one of my life’s biggest regrets, we could’ve had a lot of fun with them. Now they were just for show, that sort of fun was a thing of the past for me.

Why had I agreed to go to this blooming dinner party? I close my eyes before I walk out of my cocooned sanctuary, and taking my resolve I set out to do battle once again with life and this new reality of mine. Kaz would not take no for an answer, if I tried to hide she would find me, if I found a plausible excuse not to attend she would dismiss it, so I might as well get it over with. She is my closest friend, support and my foundation. Full of life, fun and a great cook, a goddess, but was that going to be enough I wondered, as I walked the familiar path.

“It’s just the normal crowd they’ll help you through it. You’ll be fine.” Her voice popped in my head. I trusted her judgment, but I didn’t trust myself. I hope I wasn’t going to let her down. “You won’t let me down” she had earnestly told me. But I’ve lost the ability to keep my bitter sharp acid to myself, I was sure it would slip from my thoughts to my lips without any provocation. I had once prided myself on the empathy I could give, now I felt so sorry for myself, and I couldn’t endure my condescending attitude to others misfortunes, now that I understood the meaning of misfortune.

Pulling hard on my bootstraps I rang her doorbell.

            “You look stunning Esmay.” Vincent was honest and straightforward, so I knew he meant it, it wasn’t just a pleasantry. I smiled at him as he handed me a large glass of my favourite wine. He took me by the shoulders and squeezed as his wonderful reassuring eyes gave me strength, and his gentle kiss gave me warmth.

The familiar good natured chatter filtered through to the hall and called me to join them. I hesitated but Vincent, with his supportive hand in the middle of my back guided me into their kitchen. Kaz was cooking lamb, and an explosion of aromas hit my taste buds that did a little jig of joy. She floated over with appetizers. A one arm hug held me with love and I felt drained and just wanted to crumple to the floor. Vincent topped up my wine, and I ate an olive. They were such an attractive couple, I smiled as my heart dropped – I had been like that not so long ago.

People mingled through the large homely elegant space, and out to the garden. Like feathery wavelets, they parted and quietly babbled, eyes avoiding me in kindness. Each dear friends face, trying to control the emotion within. I kissed them, releasing the confines of empathy to a much easier to breath normality.  I joined in the babble, catching up with what I had missed.

I caught glimpses of a new face that moved amidst the familiar ones. Questions he was answering with his caustic politeness pulled at me, compelling me to listen. His voice – that was mellow and smooth had self depravation lingering in his undertones, a humour that I warmed to, and understood. Kaz stood in front of me and comically the striking man bent his head round, so he could keep eye contact with me. I broke the connection as Kaz offered another olive. I took it and looking past her, took a bite. He smiled a warm inviting smile, I focused back on Kaz. She was assessing how I was doing, happy with my progress. She looked over to where my eyes were being drawn to, we looked into each other, she smiled, winked, and offered another plump black olive.

Dave would say “offer Esmay a glass of crisp chilled white wine, with olives and you will see the lighter, sensual side of her come out to play.” I shook my head at her as our broadening smiles became mirror images.

            “His name is Albie, but don’t hold that against him.” I roll my eyes

            “How could I with a name like Esmay.” we both giggle, she touches my arm. I notice he’s making his way over to us. With sheer panic rising I grab Kaz and say a little too loudly

            “Sure I’ll give you a hand.” Albie’s eye’s narrow as I propel Kaz over to the oven.

            “You girls ok?” Vincent pours yet another large glass of wine for me.

            “She has clocked Albie, but run out on him.”

            “You two have set me up.” I accuse.

            “No we wouldn’t do a thing like that would we Vinnie.”

Vincent’s deep chuckle gave the game away. You have to love friends that care and I bit my lip hard. I roll my eyes and take a large sip, well more of a gulp.

            “The starter is ready people, go sit.” Kaz announces so I wouldn’t have time to retort.

She had sat Albie and me opposite each other on purpose, no doubt. We could access each other better that way. I knew how her mind worked, and she knew I would take full advantage of it. I was in the process of doing just that, when I got caught out by his penetrating stare. His jaw was resting on his thumb, as his index finger stroked from ear down to jaw in pondering strokes. It was sensual and provocative. I decided – or rather the olives and wine had, not to flinch at his perusal, but to give him the same consideration. I’m glad I did, for his eyes mellowed, seeping out their secrets, and humour.

Those plump black olives with their hint of chilli, readied your mouth for the caramelised goats cheese squares that Kaz had lovingly laid down for us. Albie’s eyes closed as the flavours devoured him. I found it very pleasing to watch.

I was in trouble again, he had noticed my intense gaze, and was now just as intently watching me, making me more aware; if that was possible, of my new appendages. I wasn’t used to having a cleavage. Every time I looked down all I could see were my boobs it seemed. My spatial awareness was a little off kilter too, and as I past my plate, I knocked the knife off with one of them.

I had recovered by the time the next course was placed in front of me. Nonchalantly I started to cut the soft succulent slow cooked lamb, the aroma of which danced a pirouette with the roast potatoes and lush deep gravy. Normally there would  be nothing getting in the way when cutting food either, but the still soar and bigger boobs made lifting the fork to mouth difficult. Food had to take a different path now, and raised the perplexing question of – should I go around and over the top, or underneath and through the middle. Childishly I was amused by the challenge, and I felt the wine take effect and a giggle escaped.

I let the conversation skip past me; it seemed to the annoyance of Albie, who obviously wanted to know who this mad woman was. Without being introduced and across the table from, he felt decorum didn’t permit him to intrude, which amused me even more. I shouldn’t have had those naughty olives with the wonderful wine; this combination always had a frivolous effect on me. Dave was right and Kaz knew what she was doing. Should I care? “Oh no, we think not!” said the wine and olives together.

Craig, bless him thought everyone knew about my circumstances as we were among old friends, forthright as ever, loudly stated from the other end of the very large table.

            “Looking good Esmay”, He made a schoolboys gesture with his squeezing hands in-front of his chest. “They suit you!” A sharp kick from his wife, and a held anxiety rippled around the table. I let out a forgiving giggle, which made the smile come back on Craig’s loveable face, and with relief let the tension go from everyone.

I really didn’t blame him, but as I looked at Albie his preconceived ideas stung like a bunch of nettles given to me as a bouquet. The tangible tension made every eye around the table go in our direction.

            “Men get motorbikes as a midlife crisis, women it seems get facelifts or new boobs” Albie’s disappointment gave out a stunned silence that looked sympathetically at me, which I answered in my new caustic way.

            “I thought with my new improved boobs I’d get a couple of tattoos, I expect you disapprove of them too?”

            “Depends what they are I suppose.” His eyes challenged mine. I waited until he took a good sip of his smooth red wine, before I answered him.

            “Well next week I’ll be getting tattooed nipples to go with my reconstructed boobs, do they count?” He spluttered and Kaz gave him a napkin. He was gracious with his reply.

            “Beats love ‘n’ hate, which is what I’ll be getting across my arse for that, I’m sorry I should’ve thought.”

            “You’re forgiven. I don’t know why the surgeon took it upon himself to give me pert poached ones instead of my flat fried ones. As far as I can see they only get in the way.” An eruption of laughter went through the dinner party. “He assured me though they would balance out my hips as nature should’ve intended. He didn’t tell me they take a bit of getting used to.”

            “They do, what I mean is not getting used to as I wouldn’t know, but balance out your hips” for the first time Albie smiled his true and honest smile, the one that people have hidden most of the time. It was glorious and heart warming.

            “Are you saying I’ve got big hips?” feigned upset hit my voice just at the right note.

            “Sorry big foot, and even bigger mouth, I’m not forgiven then?”

            You’re forgiven… but I think I should make you suffer a little. What is so wrong with enhancing them anyhow? I could’ve done with my D cup when my husband was alive, life would’ve been a lot more fun.”

            “My wife enhanced hers and died of cancer three years later, that was not fun.”

            “My husband died of testicular cancer without enhancements… at least I don’t think he had any that wasn’t much fun either, and well look what happened to me. Mother nature is a fickle.”

            “Woman.”

            “You got me on that one.” Breath held at our combined misfortunes,the black humoured tête-à-tête suspended our friend’s faces in contorted silenced laughs, until we released them with our own. The ripples of which eased the subject matter, unrestricting the concerns we all felt, and the opinions we all held. Twisting and turning those opinions altering their course.

            “Well Esmay, which do you prefer?”

            “Life is such a bitch Craig, what can I say, I’ve always hated fried eggs, much prefer poached. I made do for years; much good that did me. Now Dave said he preferred fried, but I wasn’t convinced. He always asked for two poached eggs on Sunday mornings.” The ironic innuendo made me laugh “now I’ve got them I don’t know what to do with them, but like you said they look good.” and I rose my glass in a salute, Albie made it a toast though.

            “Fried or poached, you have to love them.”

THE END

The Joy of Her

A while ago a very dear friend wanted some help writing down a story that contained her thoughts. She had cared for her mum through her illnes and as often happens when someone you love and depend on leaves you - so many emotions curl you up into a tight ball of sorrow, called grief.

Like the roses here (taken from Pearl's garden) as the tight buds opened up the beauty wrapped within the flowers uncurled, you could see the love blosom.

The Joy of Her

I see the joy of my mum in roses, her gentle ways, the way she wrapped us up in petals of love but I don’t think she knew how to nurture us as she nurtured her garden. I think that was our gift to her.
 
She was brought up in a time when no encouragement was deemed necessary I suppose, but it would have been nice to have heard the words ‘you did good!’ I sort of took it personally until I decided to plant the rose bush in celebration of her joy. I got to thinking; which is probably my problem of over analysing life, it’s the times we live in I think. We have to be accountable for each action we give a child these days, not the same for mum. She just wanted a family, it was enough and I guess we didn’t have to achieve to make her happy and being proud just wasn’t her thing, giving love was more my mum’s style.

As I dig the hole to bury the strong roots of the rose bush I have chosen and as I look at them I see my foundation from which my family has grown. Each branch strong and sturdy with shoots of beauty ready to flourish if I tend to them. It was then I understood why she loved gardening and arranging flowers so much. Lovingly you put everything you have into it, and at a distance – you admire. With us it was the same she watered and fed us, our every needs were met, and not until now – as my hands feel the earth have I given it a thought. She nurtured her grandchildren because she could not love them as she had us. She had to stand back and enjoy her love blooming through us to our kids. God I hope I can learn that lesson – how to back off and let my boys grow, enabling them to find their own roots so they too can bloom.

She had an acceptance in life that many of us take a lifetime to try to achieve, scholars spend decades trying to reach the Zen like state she found so easy. I’m not sure how deep the resentment of that quality goes actually. She had a profound inability to tell us off as children, I saw it as a weakness that always ended in laughter. Through her illness – that took her away from us bit by bit, she refused to try to understand it. That simplistic acceptance made me so angry at times. I now see it as a strength I envy.

Cooking, being with her family, holidays to Portugal, playing cards was her enjoyment but it was the looks and words she gave her grandchildren that was her joy. It’s what I miss the most and as I stand back and look on at all the rose bushes that glisten in the summers rain, for the first time I can see my glory. So why am I so angry? I have so often thought about this while in my garden tending my flowers and I think it was because I never told her or allowed myself to see it…. that I have finally seen and understood what she saw so clearly…. my beauty.

To Pearl and her family

X

I hope you  agree she did 'do good' and I'm very proud of her. Lots of love

Parallel Universe 5

Fifteen years of responsibility came tumbling out, of not sharing the burden or the joy. In the time it took me to fall asleep I know I spoke of loss but they all merged and mingled. In the middle of his bed I lay alone as I had over the years. I took no heed over his pleads to console until exhausted I quietly slept.

Voices and the pain woke me and my eyes took a while to focus. I flinched every time I remembered some of what I had said last night. My innermost thoughts and concerns rang in my ears and the contortions it caused on Ian’s face. I had never vented those emotions to anyone before.

I had to decide quickly what I wanted to happen, what direction I wanted my life to take and how to let go so I could guide Sophie so that she wouldn’t get hurt. I tried to move but the pain was intense and I had no idea where the painkillers were.

I assumed that only having one leg incapacitated would mean the other three limbs would oblige and help me out but silken sheets were slippery suckers and before I knew it I was sliding onto the floor. Boobs slipping their anchorage just as the door opened and Rafe and Ian came in. My bottom half was cocooned within the bed covers and as I grabbed anything to cover my dignity I fell flat on my face.

They ran to my aid, rearranged and straightened me out.

‘I was looking for my painkillers, my leg woke up hurting.’ They both smiled down at me. Ian went to find them leaving Rafe to sit me down. The room was elegantly beautiful and I sat taking it in as Rafe fussed around raising my leg.

‘You ok, you look…’

‘Like shit? I tried to give myself cheep Botox on the floor but missed and enlarged my nose instead.’ His concern left as his humour took hold of his face.

‘I have to leave soon, do you need anything? I can call back’

‘I’m sure I do but I can’t think of anything.’

‘Well call me if you do.’

‘Would but I don’t have your number.’

He gave me a business card and we both felt uncomfortable, unsure. In came Ian and put a tray on a writing table.

‘Have you boys kissed and made up?’

They looked over to me and smiled. I took the tablets that were being offered. They started talking business and it transpired that Rafe was Ian’s agent. Ian held off two shoots that he was due to do this coming week rearranging and rescheduling. Squeezing my shoulders and kissing the top of my head Rafe left. Now life was complicated and shit or was it shitly complicated? No such word as shitly but in my world there should be!

Coffee with warm milk poured by the type of man I find irresistible in attitude and looks, first thing on a Saturday morning without the kids, oh how I had dreamed of that! Always be careful what you dream for is a warning I should heed. All my friends that were divorced, divorced their feelings towards their ex’s. I seem to indulging in my every fantasy. He sat there studying me as I sat indulging my daydreams, well lets face it, that was as far as it was going to go, I might as well enjoy it.

‘I know you are going to be sensitive to any suggestion I make and suspicious but I think the kids should live here over Christmas. They are off from school; you need a few days of rest and a bit of a recoup.’ His face twitched when he knew a sensitive subject was coming and as far as reading me he was doing rather well but like all men he didn’t see the bigger picture. I tried to keep emotion or thought out of my face.

‘What do you think?’

‘You just want the kids?’

‘No I just assumed you came as a whole package.’ A nice touch I though using Sophie’s words against me so softly and gently.

‘What about after Christmas?’ He was confused I enlightened him to my thinking. ‘After they have lived in this space and had the life you are willing to give them for a week, what then? How will it be for them when they have to return home?’ I knew there was no room for all of us back at mine but I was concerned how this would impact on the children, mostly Henry.

‘Henry is so very young to understand that his father dies and Sophie gets a new one who lives in a house like this. When they have got to know you, what then? I could never offer them a life like this and your mother will not be able to stop herself from reminding me of that!’ He could have defended everything a thousand different ways but he chose to agree with me. But it was his next statement that had me in turmoil.

‘I want to help out, I don’t want to make their lives or yours harder than it needs to be or has been. I’ll do what ever you think is best I just want to be part of your lives.’

Parallel Universe Part2



A Short Story to go with your coffee

Ian who had made it to the door was greeted with.

‘Hello dad where’s my mum!’

Accusation or statement it was hard to tell. Ian’s mothers face was trying to catch up with her thoughts and she looked down at me with accusations and miss understandings flying from her eyes like a blame seeking missile.

Sophie stood there and you could almost hear the cogs turn her thoughts. Her face set on questions and connotations made as her grandmother was taking in how she could best manipulate the situation to her advantage.

Meeting each other for the first time, Granddaughter squared up to Grandmother both looking as though they were choosing their weapons. Sophie had the advantage as her defence could be used as a weapon. Somehow I pitied her grandmother but not enough to stop the shoot out, after all I had a ring side seat.

Because of my daughter there were a few things I would’ve loved to ask and never would, a lot I wanted to say but couldn’t, sometimes the sacrifices are hard as a mother. I was hoping the long talks we had had about my other life and finding her farther gave us a good foundation of understanding each other. So as the battle began my fingers, legs and toes were all crossed.

Francesca stood with her indignant upper-class distain oozing from her face and her passive aggressive nature turned to max. Sophie visibly braced herself, not with the teenage angst of earlier that morning but a growing experience supporting her strong determined youthful face. It was Francesca’s undoing to try to intimidate my daughter. Choosing the love of a new family as her weapon of choice was a silly mistake and Sophie rebuffed it, she wasn’t going to miss something she never had, now was she! But her attach on me acted more like a sharp boomerang she was incapable of catching.

‘Why has your mother never bothered to tell us about my granddaughter?’

Ian moved forward to deflect the verbal blow, but Sophie held up her hand to them both, new dad and auntie she was in this fight on her own. I held the cushion ready to duck behind, this was not going to be pretty I could tell by Sophie’s locked jaw and the intent stare the hunter was about to be hunted! Thrilling and sickening all at the same time, I waited with heart pounding.

‘The day my mum found out she was pregnant with me she came to you for support. She had just found your son in bed with her look alike’ Oh that hurt, I could feel the rebound from all three of them. The brutal truth hit them all at once. As they came back from the recoil she metaphorically hit a left jab thrusting and lifting their upper jaws to a pursed lip position.

‘My mum could have pleaded for you to listen, but you, without a thought, told her your son was better off without her. Her pleads would have been futile.’ Ian looked over to me; I hadn’t put it quite so brutally. Did he deserve the truth? Well Sophie thought so.

‘If she had asked for help’ her voice was now grown up and authoritative as though she was some psychologist reporting on an issue. ‘She would’ve been beholden to you’ calmly each statement was delivered. ‘Your disrespect brought about you being ostracized from me, at least until my mum thought I could cope with the rejection.’

‘I would never have rejected you.’ Pleading and appalled played to perfection for the most effect a sympathy vote but Francesca pained face made no impact on Sophie.

‘But you did, you rejected my mum!’

And for your information my mum didn’t just throw herself at the next available man, she loved my dad too much for that.’ Looking over to Ian, who to be fair was coming to terms with a daughter in his life quite well. ‘Oh no, she met her responsibility and concentrated her whole life on me. In fact if I hadn’t set her up with Bill she would have never had another man cluttering up her life.’ Sophie intercepted the next blow from ever leaving Francesca’s lips ‘and for your information he didn’t leaver her by choice… she paused for effect and for her grandmother’s one sided thoughts to catch up ‘He died!’ I didn’t tell Ian that either. Gasps were let out as the gut punch made impact. ‘Bill was a proper dad, he thought of me, of mum, of us! You have a lot to live up to and a lot to make up for if you want to be any part of my life.’

She turned to me as if I was the child and she the parent who had to tell of the hardship of life. ‘He has to be part of it mum, he exists now!’ I knew what she ment, for a long time now she had thought of him as this mythical character, a one sided person who lived in a story that I told her when she asked me too. I had to sever a little of the umbilical cord that held us together. Another frightening snip towards not needing me for her life support but just for advice, whether she took it or not was now her decision alone.

‘The thing is I have to make up my mind what I want from our relationships.’ My eyes and ears rang out with her word structure. ‘You see I have a little brother and we all come as a package.’ My heart pounded with their meaning- this I was not prepared for.

There was a kafuffle going on at the door again. I heard Henry’s little voice and a mellow humoured voice full of apologies over not being able to keep the little fellow any longer from his mum. Henry hugged me and peaking from beneath my arm he asked a simplistic question of Ian.

‘Are you going to be my new daddy? My daddy left me. He went over the rainbow to heaven. He can see me but he won’t come back. I miss flying my kite.’

What a mess my life is, I looked down with my burning eyes.

‘Sorry mum but you’re no good at kite flying. Dad said you’re better at dancing like the kite than flying one. But that was our secret.’

He embarrassingly buried his head in my chest while a rally of giggles rang out.

‘How are you mum, he muffled.’

‘I’m fine and dandy I whispered in his ear.’ He giggled his comfort giggle.

‘Well we have to go,’ Sophie looked at me coming over to cuddle us.’ I suggest you stay and have a well earned rest mum. You and Ian can thrash out how you feel but my mind will not change. He can bring you back home tomorrow and then we could get to know each other. We need help with getting ready for Christmas at least he could do is help me with that! But I don’t want to see you gran until I get to know my dad on my own’. Then down at her aunty Zara ‘and if you don’t mind I’ll give you a call when I’ve got my head around it all.’

David came in his face had a satisfied look about it with admiration. As Sophie bent down to kiss me goodbye she whispered.

‘How did I do mum? David was listening in on the phone so he could make sure we were ok. It was his idea for you to stay so you could talk about it all. Will you be OK?’

‘I’ll be fine and dandy.’

As they walked out the door though I wasn’t so sure, I was tired, in pain and had to explain/defend my life to people who I didn’t know anymore.

 My life was really shitty!

Parallel Lives

I do love a good start to a morning when the teenager in your life just grunts at you and dismisses you as one of the low life’s in their life that have to be tolerated. I stand slightly amused by the angst of teenagisum. Their new place in the world is uncomfortable, building into a fever pitch of anger the perpetrator unsure to why this boiling feeling is erupting, so it must be mums fault.

Lost books and fights with hair, just too much to keep hold of her sanity finally it all fell in tears and then came the frustration stage of self pity. I breathe a calming intake of patience and we make it to the car. I wanted to hug her but was afraid of the prickles that had been sharpened on that self pity. Henry shouted his love for her as she made her way to school and as she turned and smiled her humanity came back and sunshine hit her face. We seized our opportunity and ran, Henry needed a hug and so did I.

All the balance of life came back and we made it to the playground to line up. Just as I was getting a grasp on the day Henry got knocked over and ripped his trousers. He began to scream for England with the enthusiasm of an Olympic hopeful. He hates wearing other people’s clothes so it wasn’t very helpful when the Teachers Assistant came striding over and with authority told Henry, he will have to go and find a pair out of the spare clothes box. Henry’s horrified expression brought out the mother in me and I stared at the TA in that universal motherly way and she backed off. Luckily I had a couple of pairs of trousers I was bringing to the school that were getting a little small for Henry so disaster was averted and he went in, being kissed by his latest girlfriends.

My day carried on in this vein and by pickup time I was in no mood to think what I should cook for the evening meal so hurrying off to the supermarket to pick out what we fancied, I braced myself for the arguments it was about to cause. But to my astonishment they were talking, chatting, laughing and agreeing what they would have to eat. A flood of friends and acquaintances stopped and chatted and by checkout I was refreshed from my topsy tervy day.

The children had loaded everything onto the conveyer belt and I noticed the few additions, they looked at me pleading with those eyes that pull at your heart and taking full advantage of my momentary weakness, Henry ran off to get desert. Sophie’s eyes danced at mine and she offered to go and see what he wanted and not to worry she would make sure it didn’t cost too much.

Absentmindedly I looked up along the rows of shoppers unloading their trolleys and loading their bags with the rhythm that it causes, when I noticed a face looking back at me. Instantly I coloured at the intent gaze I was receiving and I knew I should know the face but could not place it.

Time stood in limbo as my mind filtered my history the assistant chatted as I searched my memory banks for the place or name the face belonged to but I just couldn’t place it. I paid for the shopping and turned to leave perturbed by the stare that followed me. Against my will I looked up and met those eyes that looked intently and instantly it dragged my memory to a parallel universe of my life. Two lives that once had been so close and that shared so much together now live totally separately. I looked across at what could have been my destiny. I never really understood why our marriage failed.

As the children come over Henry asks if he has to take back desert beings I had finished paying for the shopping. I smile down at the little fellow and I give him some money to go on self service. Forgetting the edge of frayed younger me that man had caused I brought myself back to my parallel universe, my now reality. Skipping and dancing Henry went with the money and with his sisters help paid and picked up the change running back to me with his accomplishment.

I could feel those eyes follow our every move, unnerved I checked my appearance in the window, not a great look when meeting your ex. But as we tumbled out of the store I had forgotten the other me that other life and we danced and smiled as sweets were held aloft and shopping bundled in the car. The children settled in their seats reading their magazines as I took the trolley back, thinking of the wine I had waiting nicely chilled and the book that I promised I would make time for. Friday night was going to be my night when an old gentleman pushed his trolley into my ankle that then hit the screw that impaled my leg onto the side of the trolley shelter.

His strength my flesh that impact. I stood there leg suspended on a two inch piece of metal wondering what I should do, feeling slightly sick. Children, dogs, book wine came tumbling down on me and the tears began to fall a small but significant ‘bugger’ left my lips and danced on the chilly Christmas air just as the charity organ began to play ‘We Wish You A Merry Christmas’.

A deep and hefty sigh mingled with my resolve and when I looked up to the voice that had indignation and asked me none too politely to move.

‘I can’t you have just clamped my leg to the screw’

Sore the blood bubbled, popped and spilled down my leg. I hadn’t eaten all day and I began to swoon. I’m a bit of “a woose” when it comes to blood anyhow. A face older than I remembered and sadder in the eyes, looked attentively into mine. So there I was impaled as our parallel lives collided into one again. A vortex of emotions flashbacks of happenings that had been my reality but felt like a whole different universe now and unrecognizable to the life I now lead.

As he held my leg gently he organised someone to ring for an ambulance, I could hear his voice, calming, gentle not like it was the last rime I heard it. I looked around at the bubbled and floating faces and found a friend who immediately came to my side. Our eyes locked helping me to focus on my reality pushing the fuzzy mixture of thought and wondering away.

‘Carol could you take the children and ice-cream out of the car and keep them safe?’

‘Will do’ she smiled ‘I’ll keep the ice-cream and the children safe.’ She quickly scanned the scene assessing and taking in what needed to be done with her efficient and caring way that comes so easily to her.

‘I’ll ring David and he can pick them up and I’ll come with you.’ We could hear the siren and she made her way to the children so they wouldn’t panic.

Ian looked at me and the years fell away crossing the parallels making one life sphere. Time, space, life, how strange it all is I thought as the paramedic pumped me full of pain relief that gave my mind more clouds of fluffy haze. They had me wrapped up and seated in their stretcher thing before I realised that my foot was free. My mouth muscles refused to work and I had to think how to speak as Henry asked what was happening. A picture of his worried face freeze framed. He had seen this scene before when his dad had died of a heart attack not even a year ago.

‘Henry they gave me wibbly wobbly medicine so they could take my foot off’ He screamed

‘Off the wire silly’ Sophie explained

‘You look like daddy, mummy’ my stomach lurched.

‘She’s just had an accident Henry; I promise she’ll be fine now. Let the paramedics take her so they can x-ray her foot then she can have a plaster on like the one they put on Izzy. Then she can come home’ Carol explained while holding his hand.

‘What to day?’

‘Maybe tomorrow, that means you will have to have a sleep over with Izzy. That revived him and his worry melted away into an excited adventure (he had never had a sleep over).

Sophie weakly smiled across at me not daring to come for a hug as she knew I would break down and cry. Ian went over to her and they talked. She nodded several times and looked down at me, wide eyed and sympathetic and blew me a kiss and then Carol took the children away so their backs were turned as they put me into the ambulance.

Slight panic (which was all I could muster with the drugs they had given me) as I realised I was on my own when Ian jumped into the ambulance too. I didn’t know which was the worst, being on my own or joined by the ex-husband of fifteen years ago that had never met his daughter and didn’t know she existed. My life was a bit of a shit really.

After all the kafuffle of x-rays doctors and such a splint was put on until the swelling had gone down and a more permanent plaster could be applied. The screw had chipped the bone a little and because it was on the Lateral Malleolus (the sticky out bit of the outside of my ankle) no weight could be put on it as the screw had acted a little like a chisel.

Like I said- my life is a little bit of a shit! A week till Christmas and the kids presents to buy and I’m going to be stuck in plaster. Now I was being held captive by my ex-husband who promptly took me to his home. He now lived five miles from my house. He had sussed that Sophie was his; hardly surprising as she resembled me very little and was a dead ringer for Ian’s little Sister and his mother.

He sat me down in his comfy sofa and elevated my leg as advised by the doctors and asked if I would like a coffee, beings I could not drink with the pain killers  I accepted but felt that I could have done with a little balmy juice and thought of the wine chilling in my fridge. Forlorn I looked around and on a wall a collage of faces hung prominent and proud taking up most of the wall with a beautiful frame of glass and enamel. Before I could focus on it more Ian strode in with coffee for me and a whisky and coffee for him. Like I keep saying, my life is Shit! I could have done with that whisky!

He talked after he downed the whisky giving me time to collect my thoughts and I was grateful of it. He slowly took me through his life and explained about the picture that had won many awards and many commissions for his work. He was and always had been an exceptional photographer.

All the women he had ever had a relationship with were versions of me not just in looks but in likes and thinking. Was he trying on every version of myself until he found the combination that he enjoyed…… liked……. Needed……..Loved? He still hadn’t found her his eyes were too sad for that to be true. As I looked through all the pictures it was amazing how different and yet almost the same people can look. We had been consumed by this idea when young and in-love. The idea that we are not as unique as we like to think our selves that there are copies of us all over the world or the universe. This idea wrapped around us, consumed us and in the end destroyed us. I had found him in bed, in our perfect home with one such look alike.

Those raw feelings floated around me but didn’t get inside me as they once had. They glided over my skin prickled the surface then abated. He was as gently as he possible could have been under the circumstances, trying to explain his behaviour that night. It was all so insignificant to me, what had been had been what it had ment to me no longer was and his life no longer my concern. Why he thought it was, dumbfounded me a little. But it gave me time to think through the ramifications for Sophie and the knock on effect for Henry. Sophie was intelligent and articulate and knew the truth as I had lived it and saw it. I’m not sure he would survive her altercations on the subject. Her debating and confrontation technique had me running for shelter and I was use to her barrage of self-truths. His reasoning of his search for his art would be used against him and knowing that soon the meeting I most feared was upon me I was not going to give him any shield to protect himself with or advice to help him through it.

He then broached the subject of Sophie and why I had not told him about her. With my eyebrows raised in disbelief I reminded him of the day I walked in our home and immediately knew something was wrong. I spared him no detail that his mind had forgotten. I took him through the events through my eyes and thoughts. How I grappled with the deceit from the one person who I thought I could trust and how the word love had become a farce for me.

To his credit he listened with intent and never interrupted, focusing on his hands rubbing his wedding ring that he still wore on his tallest finger on his right hand. When asked I told him what had happened when I went to see his mother when I found out I was pregnant to let her know and to find out where he had gone. How, before I could broach the subject she had explained it was all for the best our break up and never gave me time to explain the true reason for my visit. How after that day of immense hurt I decided they had given up all rights of knowing Sophie. I thought I had been loved as a member of their family and found out that I had only been tolerated. His face was bleak and ashen with the other side of events he had never contemplated before of hurts never imagined. And as I looked down at my vibrating phone the message came ‘on my way x’

I knew he would eventually ask to see her and I didn’t want a preconceived meeting with time to make the best impression for her. He looked at my hand then on to my mobile and then at me.

‘Did you need to ring them to tell them how it went?’

‘I’ve text already, they know!’

Noises and laughter outside the back door as it was flung open I could hear bags of shopping and for the first time considered if he was living with someone, had children. Women’s voices came out to greet him and he strode out to meet them.

I looked around the house, a women’s influence danced around but was not in-control. Again it was spookily similar to my tastes. Of all the people I though who would walk into the room I was not prepared for his mum and his sister. His sister was beaming and came over and sat next to me and I could not get over the similarity of my little girl staring back at me as a grown woman. Then as I looked up the grown woman turned into a pensioners face. To say it freaked me out was a little of an understatement and just as I caught my breath a knock at the door announced the arrival of Sophie. Oh this was going to be fun!

A tribute to Jim

When ever I have mentioned my brother’s suicide there are those who will tell me how wrong it was. Well I struggle with that sentiment.

My brother was full of life and capability stripped by his mental illness. We have a lot to learn about the inner workings of the chemicals released in the brain that induce conflicting thought and perceptions, one day; I hope, we will support those in this field and give these illnesses the credence they deserve.

The struggle Jim found himself with (As far as I understood it) was like an out of body experience. He had told me, just before his death that very often he felt as if he was looking down on himself while something else controlled his body and thoughts. He had researched the drugs and the effects and as a result taken his findings to a solicitor, reasoning that these drugs were to blame for the way he behaved and the ‘Stupid thoughts’ (his words not mine) he was having. He had convinced the solicitor and made us think too, about his treatment. The doctor he was under explained in simple terms, how Jim’s condition took hold and how the drugs affected and interjected his thought process which they hoped would pull him out of the deep depressions or the highs he was experiencing. I am forever grateful to that doctor who showed my family great compassion.

Though we stood firmly by his side I knew his struggle was monumental and it was crippled by the effect it had on those he loved, though our suffering was nothing in comparison with the one he went through daily.

I know he didn’t take into account the long grief stricken road his family would take, how could he? We all ride the wave of emotion in different ways and in this great fragmented country of ours we find it hard to cope with strong outpouring of emotions, preferring to keep them hidden and out of sight. I haven’t got a problem with that but we must learn to ride the wave and not suppress it, as these feelings can become a great big bully if we let them. Talk about what happens and not hide it, listen and not criticise or chastise, then grab hope and remember if we look closely enough, every problem has a solution; possibly not the one we would wish for, and sometimes you have to make do with what you have, after all, we are only human.

So on this night many years ago we lost my brother and Tilly’s Moments were borne. I vowed in that suspended moment of grief, I had loved deeply enough to live life for us both as best I could. To accept that I may not understand or agree with things as they happen but I would always carry my brother’s smile with me.

My Mum and Me

Muggy summer days

When the atmosphere is full of thunder

I pull from my heart my brother’s smile

With the song of blackbirds

Cutting through the melancholy air,

I close my eyes and see it there: -

His deep-broad smile

Upon that dimpled cheek

And his clear blue eyes

That still makes me weep.

I yearn for his voice

For his news and his thoughts

As I watch the thrush, sit upon her nest

And see the blackbirds pick

The worms that are the best,

I rest my thoughts for a while

And play in my mind a film of him.

As now I look out of my window

I see my son and daughter playing,

I can see us making up games

Our sounds

And I smile fondly,

As our mother must have done

Those years long since past

I try hard to listen to his sound

If I heard it, how would I be?

My love for my mother grows

Ever strong

With reluctance I carry on my day

I put back in my heart

What I had taken out,

And sealed it with a smile.

For though we have a pain

That

Follows us

We would not wish to have lived without.

Our thoughts now forged

Together

As one

My Mum and me x

So with a glass of wine I will hold it aloft and smile X