Lizzie Steel

Jump to:

  How a butternut squash tipped me over the edge

  Why this author has got all gritty

  Why I quit my job after two and a quarter hours

  Boys are better in books

  Enjoying the now

  The grief that keeps on giving

  What am I?


How a butternut squash tipped me over the edge    back to top

On the 2nd October 2017 I tried to peel a butternut squash, half way through a panic attack started which lasted for four days. In those dark and frightening days it would have been easy to assume that anxiety had won, that it had well and truly beaten me, but now with time and perspective I can see that it did not. Confused? Allow me to elaborate…

In May 2018 I had writers block. My second book was newly published and I was finding it hard to start my next. It was at that time that I noticed a shop nearby had a to let sign. I went with my Mum and had a look around. It was dank, decrepit, and had a less than ideal track record for the businesses that had used it in the past. Naturally we signed a one year lease and decided to turn it into a coffee shop. Can you see where this is going?

Through the summer we slaved away, juggling workmen, environmental health paperwork, and our own wild ambitions and on the 29th September we opened. The coffee shop looked incredible, our first two days were hectic but successful, we then closed for two days. It was on the second day that I was to be found at the coffee shop with four butternut squash. I don’t know if you’ve ever tried to peel and cut a butternut squash, if you haven’t, my recommendation is that you do not.

When I went into the shop that morning I was feeling what I would call fizzy, a general uneasiness registering in the pit of my stomach. People I had bumped into in the morning had commented that I must be delighted with the way the first couple of days had gone. I was delighted yes, but I was more daunted by the future. The future which suddenly looked like an endless stream of vegetables for me too peel, chop and make into soup. Suddenly as I was hacking at the huge vegetables my fizziness increased and a couple of traitorous tears leaked down my face. I wiped them off angrily, determined to pull myself together, determined to be OK and enjoy this incredible opportunity. The more determined I became the more tears leaked out. The fizziness was suddenly gone and was replaced by a genuine, overwhelming sense of doom.

Though blinded by tears and finding it increasingly hard to breathe I continued peeling. I wanted this, I reminded myself. What I was scared of, I don’t even know, my answer would have been everything. You may have seen my other article where I quit my new job after only a few hours, this was that all over again, only this time, I could not get out. I couldn’t quit when I was the boss, I couldn’t quit when I had sworn to my Mum that this was exactly what I wanted. I was trapped.

The peeling was mostly done and I moved on to chopping. The slippery squash flew straight off the board and onto the floor, and I joined it, my whole body trembling and shaking with the sobs that poured uncontrollably through my mouth. Reaching for my phone I called my husband at work and he got my sister to come to me. She sat with me for a very long time and normally her comforting presence would have been enough for me to calm down and move on. This time it was not.

She took me home and only when my husband arrived did I find the iron band around my chest loosen a fraction. I am married to a straight down the line, rational thinking, essentially unflappable man. He tried everything, he talked it through with me, he crushed me in his arms while I cried, he put on Jane the Virgin. I finally went to sleep but even in dreams my fears haunted me. In the morning he went to work and when I was alone again I shattered. Exhaustion was now added to my symptoms and I don’t know how I functioned that day, all I knew was that I was spiralling down and down and down. That afternoon my husband took me to the doctor and the next days are a genuine blur.

Remember I said this time I won? Well, I did. After four days of the iron band crushing my chest and my future seeming to be annihilated, the constraints loosened, my vision cleared and the crushing sense of doom I had been carrying turned into a slight fizziness again. When I had wanted to run I didn’t, and when I came out of the fog I still owned a coffee shop. I had weathered the storm. As planned we owned the shop for a year and then as planned we sold the business. Even the fizziness disappeared. Again, I won.

I saw a description of myself recently captioning me as ‘an author who struggles with crippling anxiety’. If all you knew of me was my articles that would be a fairly accurate analysis. In general I don’t love how much I write about anxiety, and on a day to day basis I’m not an anxious person. Before the 2nd October 2017 I hadn’t had a panic attack for a very long time and I haven’t had one since, so why tredge it up, why go over it and recall such a turbulent and disturbing time? My answer is simple, because it's real.

It is a very great honour that people take time out of their busy lives to read words I have written, either in my books or articles. There is nothing I love more than when they get in touch with me about what they have read. When I write about anxiety my notifications go through the roof. This is something that so many people struggle with, and it looks different for all of them. I am blessed with the ability to overshare and not really care and if that helps even one person, I’ll keep doing it.


Why this author has got all gritty    back to top

Prostitution, trafficking and modern day slavery... Why this author has got all gritty.

Putting modesty to one side, I love my new book. I love my characters, I love their journey, I love their progress. I miss them already, and closing the book on them was almost as hard for me as it was to write it in the first place. Parts of this story are harrowing, and believe me they took sheer determination to write down. The reason I struggled is because they are real issues, happening around us right now.

It is estimated that 45.8 million people are currently living in slavery across the world (Global Slavery Index 2016). It is also estimated that 600,000-800,000 people are internationally trafficked each year. Approximately 80% of these are women and girls (US Department of State Trafficking in Persons Report 2007). Just as I was finishing my first book, I read an article in the Guardian, "Why Men Use Prostitutes' (2010), the article is based on a 2009 study of 109 men in London who frequently used both trafficked and non trafficked prostitutes. The men they questioned were so brutally open about their feelings towards prostitutes and their experiences with them, that my imagination was sparked immediately, and Corina's character was born, encompassing aspects from prostitution, slavery and trafficking.

Corina's story is just that - a story, but whilst she may be a fictional character, her circumstances are mirrored by a modern global reality. It was my aim to shine a light on this crisis, and portray a realistic account of the life that women and girls around the world find themselves involuntarily living in. That was a difficult thing to do for a romance author and closet fluff-literature lover. It was important to me to honour the depth and breadth of the emotional crisis real survivors experience. Too often in popular culture women bounce back from cataclysmic events the very instant an attractive man arrives on the scene. The next thing you know they are 'normal' again, no scars, no inner torment, no psychological issues to speak of - the man who always says the right thing at the right time cures her immediately as she basks in the radiance of his good looks. Clearly this isn't reality.

I went to see an expert in the field of sexual abuse and dissociation. I went to her with this concern - I love a happy ending, but I didn't know how I could pull it off without discrediting the people that actually live through this kind of trauma. People are incredible, she told me, it is possible for them to make a choice to try and be a well functioning human. With drive and determination those brave people can pull themselves back from what they have been through, if they can access the right support. You would not believe people’s will to survive. I took her words and ran with them. Hopefully spotlighting healing as a journey with different landmarks and plateaus along the way.

I hope you love my story as much as I do. I'm going to go and sit in a dark room and rock quietly for a while now.

A Life More Complicated will be available from 1st March.


Why I quit my job after two and a quarter hours    back to top

Today at 8:30 I started a new job. Today at 10:45 I left my new workplace. Today at 10:52 I arrived at my Mums house and cried for 1 hour 34 minutes. Today at 12:26 I emailed my new employers and handed in my resignation.

Believe it or not, this is not the first time I have done this, not even the second. Three times I have walked out on my first day and quit a couple of hours later.

When I tell people, their reactions are always similar. A kind of wide-eyed mixture of shock, horror and confusion transforms their face and their voice normally becomes loud and high pitched as they ask me why I would do such a ridiculous thing.

As constant as the confusion from the people I tell, my answer is always the same, ‘it's difficult to explain’.

What I mean by that is, it's difficult to explain to people that are mentally balanced, rarely upset, and never shaken to the core of their being. It's very difficult to explain how I feel when I don’t really understand myself. It's also difficult to explain that I wish that the outcome had been different, even though it was me who caused it.

I first went to the doctor about it when I was at uni in my early twenties. Before the doctor suggested that I was suffering with acute anxiety, I had genuinely no idea that my reactions and what I was feeling had a name, and that I didn’t have to put up with it. I thought it was normal to go to bed and wake up an hour later in a breathless cold sweat with my heart pounding so hard it felt like it would break free at any moment. I had no idea that it wasn’t normal to weep like someone had died every time I set off on a holiday because despite wanting to go, it terrified me.

So there I was, a 22 year old bundle of nerves sitting with a very kind GP as he explained that what I had perceived to be irrationality was actually a thing. Knowing what I felt had a name, knowing how I felt was not uncommon and being given some strategies to handle it helped. It all helped but it didn’t take it away completely. For a long time the anxiety left me, life was less stressful, I learnt to notice triggers and catch myself before I blew things up.

But that was then. Now I’m 30 and I just quit a new job after two and a quarter hours for the third time. Why? Because despite choosing to rise above the twisting feeling in the pit of my stomach that told me to stay at home this morning, I went in anyway - it's normal to feel nervous on your first day. It's not normal to feel like a strap of iron has been placed around your chest so tight you cannot breathe. It's not normal to feel like the walls are closing in around you. It's not normal to start crying at your new job and then be totally unable to stop. It's not normal to be physically unable to do a job that rationally, I know I can do well and with ease.

I tried to beat it, I tried to rise above it and I tried to reason with it, but today anxiety crippled me and I quit my job after two and a quarter hours.


Boys are better in books    back to top

There is a time and a place for everything, well maybe not everything - I'm pretty sure murder, for example, is never acceptable. OK so, there is a time and a place for most things. I have a dirty secret, trashy books have a time and place in my life. I'm glad I said it... I feel lighter already. The thing is I'm a writer, so obviously I'm a reader too. When I was starting out on my quest into writer-dom every piece of advice was telling me I needed to read. Great, I thought, as I reached for my much loved copy of Twilight. Once I'd satisfied my taste for teen vampire angst, I returned to the advice for writers. 'Read material a level or two above what you hope to write'. Ah, sorry Stephanie Meyer, you're out. Not a problem for me though, as much as I love the trash, I love the classics, I love articles, I love academic study papers (secretly I hope someone catches me reading one and thinks I'm hugely intelligent). So, I read. Everyday I read a bit of something classic, a broadsheet article and something academic, everyday I write something, and everyday I try to silence the little voice in my head begging for trash.

Going cold turkey on the trash wasn't just because of the advice for writers article I read, it was more of a personal decision too, and I'll tell you why. It is my opinion that romance novels, (and films) are ruining real life for the women who believe them. I know what you might be thinking, the self-righteous woman who is writing this preachy article is also the author of a romance novel. I am, and I will not apologise for my book, I am proud of it, but it should come with a warning. WARNING: This book was written by a woman, therefore every male character within is inaccurately portrayed - do NOT expect men in the real world to behave like the ones in this book. Do you know what, I think I might actually get that printed on the first page.

If I'm wearing pyjamas and eating snacks then I'm in the mood for some comfort reading. If I'm in the mood for some comfort reading then one author I will go to is Julie Johnson. She is an indie author like me, and is doing really well which is great. I love her books, the romance is predictable but the storyline isn't. Anyway, its her tag line that I want to focus on. “Boys are better in books", Julie Johnson has this written everywhere, its all over her website, its in her books, you can even buy a cute Julie Johnson cup with it on. But heres the thing, that one saying encapsulates beautifully the entire problem with female-written, straight romance novels. 'Boys are better in books' Of course they are, they are written by a woman and women know what women want! They are written by a woman so none of the male characters are even slightly male! Yes they may be tall, have gorgeous eyes, hair you want to touch and just the right amount of stubble, but that's where the man-ness ends. As soon as our characterised Adonis opens his fictional mouth, everything is a lie.

I am married to Jon. Jon is a real man, he is tall and has beautiful eyes, his hair is... interesting and his beard, well, its a bit much to be honest, but to me he is breathtaking and I love him. Around 50% of the time that I speak to Jon he listens. Of that 50% around 25% of the time, he responds in an appropriate way. Sometimes, with prompting, the appropriate response goes up to about 35%. Maybe its the general difference between a man and a woman, maybe me and Jonny are the exception, but even after ten years together we don't always know what the other needs. The fact that in book after book after book in this genre we are faced with all thinking all feeling, maybe a little bit psychic male characters, only serves to poke the already annoyed woman who probably opened that book because her husband/boyfriend annoyed her. The annoyed woman enters that world, still pissed off because she didn't get a hug after a bad day, (I tell Jon everyday, most of the time if you want to get it right just hug me) and shes faced with perfection. In the story the heroine is crying and the strong man pulls her to him. He listens to her beautifully, he responds to her beautifully and passionately, simultaneously comforting and showing her that he listened to and took in every word she said, he then holds her close as she elegantly falls asleep with her mouth closed and without snoring as he watches over her.

Do you know what, there have been times what that has happened in our house. There have been times when it doesn't. Sometimes when I speak, I look at Jon and he genuinely looks in pain as he tries to understand what I'm getting at. It is when I come to Jon expectant that it all goes wrong. As you would hope for a writer I have a vivid and fast imagination, and it is my husbands worst enemy. He no longer tells me he has a surprise planned, because the second he does, I see a helicopter landing in our garden to take us to Paris for the weekend. He's actually talking me to the cinema. In reality some people are grand gesture people, and others are just not, I'm not going to say I wouldn't like a grand gesture, but I also like the cinema, and frankly once you have a child even going to Tesco as a couple is exciting, but that's a story for another day.

So my beef is this. The perfection illustrated to us in romance media is unrealistic and unhelpful; but what about the addicts who can't put it down? Are we allowed to make a time and a place for a romance novel? Obviously yes, you can do whatever you like (again, probably don't murder someone) but my recommendation would be to manage your real life expectations. This is not about thinking that men are rubbish, because they are not. What's the male equivalent of a feminist? Maninist? I am writing this as a maninist, men are great, really great. In all honesty they are better than the ones in the books, even with their out of control facial hair and toilet seat leaving up tendencies (men in books ALWAYS put the seat down). They are better than the men in books because they are real, and even though they will not say the right thing at the right time every time - when they do say the right thing at the right time, it is literally the best. It is the best because you've been waiting so flaming long to hear the right thing at the right time, you've given up hoping for the right thing at the right time so when it finally comes out... WHAM, it hits you like a train. Hes only gone and done it - hit the ball out of the park. If you're like me, you'll make such a big deal about it he won't do it again for a couple of years just because he can't handle the fuss, but its still worth it.

My next book A Life More Complicated will be finished this year, and even though I have written the main character, and even though he is a man, I have tried to make him as real as I can. By character (not circumstance) he is based entirely on the man I know the best, my own beautiful neanderthal Mr Steel.


Enjoying the now    back to top

We live in a fast paced world, there's no denying it. As an impatient person I love the speed of everything available to me, but on a more basic level I've had enough of the unrealistic precedent that high speed everything is starting to project onto real life.

As a little girl I was an utter cliche, I dreamed of meeting a beautiful person who would sweep me off my feet. We would be totally in love and eventually come back down to earth married with kids. My daydreams were very detailed and I still remember yearning for the day I would live in a house with… wait for it… a pale green carpet and cream leather sofas. High ambitions indeed. I'm relieved to say that as I grew up my dreams did evolve, but the most fundamental desires were still there; I wanted to be loved, and I wanted to reproduce.

When I was 19 I was swept off my feet by the most unconventional man I have ever met, Jonathan Steel. It was beautiful, but us getting together set into motion something that I didn't know existed until that moment. The drive of people around us, pushing us onto the next stage of life. Even at the tender age I was, and even after only a few weeks of being together, people began to ask me if I thought we would get married. Over the following months, those vague and sporadic queries evolved into, 'When do you think he'll propose?' As if after four months we were dragging our heels.

Thankfully Jon is a man consistently unfazed and unaffected by the world, judgements and pressures around him, however, just one year later he got down on one knee and asked me to marry him. I was delighted. 'When is the wedding?' People asked immediately. This time, it was a more natural question, more obvious, I was also so excited by the whole thing I didn't mind.

The next question was less expected… Adorned in my beautiful dress, just hours from the altar, I was asked the question that would eventually become my worst nightmare. When are you going to have a baby?

At the time I was training as a midwife, and for obvious reasons the thought of having a baby whilst witnessing what I was, was a frankly terrifying. I gave a vague answer in reply, brushing the person off as a little rude, and much too forward. Little did I know that it was a question I would have to answer repeatedly.

Looking back on that time, I have to ask; where is the space for contentment? If you're worried about getting engaged when you should be falling in love, if you're anxious about having babies when you should be enjoying your wedding day - when do you get to enjoy the moment?

I have many friends of the same age as me who are single… cue the shock and horror! An unwed 30 year old - preposterous! 'She must be so anxious about it', people say. 'If she doesn't find someone soon she'll never be able to have children!' I know that for some of my friends their single status is something that they struggle with, but for others of them, they are happy. Well, when I say they are happy, I mean they wake up in the morning happy, they drink their morning coffee happy, I'm going to go out on a limb and say that when they encounter someone who says to them - 'oh, you're single? I'm so sorry.', or 'you're single? Let me think who I could set you up with!'... I think right about then, their happiness may wain slightly.

Fast everything. Projected discontent. Surely if our lives don't look a certain way, or if we don't fit in with society's image of happiness we are destitute in our sadness - surely?

Back in my own experience, time went on and Jon and I talked and decided we would start trying to have a baby. For years I couldn't shake an inexplicable fear that I would find it hard to conceive. There was no medical or cycle related foundation to that fear at that time, but it still niggled away at me, before we were trying, before we were even together, the fear hounded me.

I felt so grown up that first month. I was a married homeowner (well mortgage payer), yet somehow 'trying for a baby' seriously made me an adult. When I got my period at the end of it, I felt like a had been hit by a truck. Logically I knew the statistics of conceiving in the first month, were slim for anyone, but for me it seemed to be a confirmation of my worst fears.

I experienced that same feeling for many many months. I am not going to say how many months exactly, though I do know; each crushing, debilitating and gut wrenching let down, is branded individually within me still, but I am not going to put a number on my months or years because I feel it's irrelevant. I can honestly say the disappointment was as significant that first time as it was with my penultimate period, yes there was more anxiety as time passed, but the basic pain was the same.

Anyway, life continued around us, people continued living, people continued questioning. 'Are you thinking of having kids?' 'When would you like a baby?' they would ask, as if I had any choice in the matter.

More time passed and I consider myself blessed that following multiple scans and tests we were given a diagnosis, and an explanation of what the issue was. Even though the diagnosis was bleak at best, I think I would have struggled with not knowing. It was then that we decided to tell people. The questions and expectations were too much, I told people of our struggle, thinking that surely if they knew they would shut up. I was wrong.

My new worst phrase was born; "You're only young!". One the one hand, they were right, at 23 I was young, however I still fail to understand the significance of that statement, as if time could heal a degenerative disorder.

I know this all sounds bitter, but I want to tell the truth, and the truth is I was. I watched as people around me planned their conception date, and pulled it off. I held newborn babies and smiled on the outside whilst my soul was shattering inside. I looked around baby shops and nurseries with friends and family as they were planning and preparing for their arrivals. I felt their babies kicking whilst the empty void inside me contracted with grief. This was a dark time in my life. Until then I didn't know it was possible to hear someone you love tell you they are pregnant without feeling anything other than elation for them. I didn't understand how I could be simultaneously happy for them whilst wanting to smash my fist through a brick wall.

People have since told me I handled the whole thing so well. It was clear to me when I heard that that I can mask my emotions better than I realised.

Then the impossible day came. On the last month of medication, and defying a scan I had two weeks before which told me the treatment had been unsuccessful, when it seemed that all was lost, when we truly thought we had reached the end of the road, a tiny pink line appeared where I had never seen one before. The pregnancy test shook violently in my hand. Millie, just a few cells big, burst into our lives.

She burst into our fast paced world, to an incredibly impatient mother, this girl had kept us waiting, but boy was she worth it.

When she was two weeks old, a well meaning person was visiting us. I pointed out a tiny outfit that she had already outgrown. Her reply broke me; "keep it for your next."

From that moment on, and for the first four years of Millie's life, I was insistent that I didn't want anymore children. When people started asking when, not if, I would have another one, I laughed and rolled my eyes - my list of reasons was extensive. It was only last year that I began to question my own judgement, I peeled back the layers of excuses and anxieties and there it was, the pain of the process. Still lingering on despite my beautiful daughter, fear of the monthly let-downs gnawed away at me.

We tried again. A number of times. The pain returned, as brutally as before, only this time I felt guilty for it. What right did I have to be sad, when I have a child already? On top of that, Millie noticed that her Mummy was crying a lot.

'Do you think you'll have any more?' My heart sinks. For a while I was honest and replied that we had tried but it wasn't possible. 'You're only young' was brought out again, but it was now coupled with 'but you had Millie?'

This article is not for people who are going through struggles with infertility, there are a million better articles and groups to support you. Just so you know, I have your back and this article is to benefit you. I wrote it for everyone else. It's for everyone who see life's great events as something to hurry towards and tick off frantically. Its for people who ask the dreaded questions, and for people who don't understand when a people say they are happy as they are. Its for people who don't allow others time for contentment.

I understand there is a curiosity in us, and actually most of the time people are just being friendly by asking these questions, they are just showing they are interested. My suggestion is this though, instead of focussing on what people haven't got, ask about what they do have. Ask about things you know are going well for others, focus on their achievements and use your conversation as a way to build the other person up, instead of drawing attention to what you feel is missing.


The grief that keeps on giving    back to top

On the 27th December 2002 everything changed. I woke up on that day still full of Christmas cheer and got out of bed to go and join my family for another leisurely holiday breakfast. My parents were not there. 16 year old me walked from room to room looking for sign of life, and when I found none I looked instead for a note explaining they had gone to the shops or something. There was no note. My brother eventually emerged from his room and was as uninformed in as me.

I was 16, my parents didn't need to tell me all their comings and goings but something within me knew that everything was not OK that day. By lunchtime (admittedly only a couple of hours after I got up), I was very concerned and began ringing my mum. No answer. I rang again, no answer. I rang again, my Mum answered and I wish that she hadn't, my Dad had had a heart attack.

My brother and I called my sister and huddled together, side by side on the sofa waiting. Eventually my mum came home and explained everything to us. Daddy was OK, he was being looked after, and he was comfortable. I went to bed that night, shaken but relieved. We had had a scare, but he was OK.

I remember seeing my Dad in the hospital, he looked completely normal and I couldn't really understand why he was still there. True to form he was hilarious, explaining that he was bored in the night and couldn't sleep so decided to play with his heart rate monitor, making himself as still and calm as possible to see if he could get his heart rate below 40bpm. He managed it , and promptly got so excited that it skyrocketed setting off an alarm and causing staff to run to his aid thinking he was having another attack.

That is my Dad. Funny.

If he had a heart attack and then got better, why on earth am I here writing about it 14 years later? Because he never got better. His heart got mended brilliantly and he was back to jogging and being hilarious less than a week after surgery, but he never seemed quite the same. When you live with someone, its very difficult to notice changes that happen slowly but there were moments even then, when my Dad made me very nervous.

One evening he came to my school to see me in one of my A level dance performances. I am not a dancer, in anyway shape or form. I thought performing arts meant I would be singing and acting, not dancing. Anyway, needless to say my performance was laughably bad, I remember bounding over to my him afterwards waiting for some kind of whity rundown of my rusty robotic movements, there was nothing. I went on to introduce him to a couple of friends he hadn't met before. That would have normally ended up with us all happily giggling within moments. My Dad said hello, and never quite met their eyes. I didn't know why, but a piece of me broke that day.

Those friends will have forgotten that moment probably minutes later but I don't think I ever will, it was the moment that I knew my Dad was not OK. I watched him closely from then on and those seemingly minuscule blips were becoming alarmingly frequent.

Fast forward a couple of years and in a random check up with a London doctor, he was described as having a 'mask-like expression". Three words that will also be with me forever, three words that were banded around for a while that apparently meant something really bad. I didn't know what.

Sometime later the first diagnosis rolled in. Parkinson's disease.

Apart from knowing Mohamed Ali, and Michael J Fox had it, I had no clue what it was. I thought his hand might start to shake and that would be it. His hand did start to shake, did I mention my Dad is hilarious? I remember being at a museum with my family and my niece and nephew were colouring in and moaning that it was taking forever, my dad walked up to the table, "give me a pencil" he said "and I'll just try and hold my hand still on the paper" the tremor had the picture done in no time. We all laughed but a piece of me broke that day.

When Millie and her cousins were small they used to love falling asleep on Grandpa, he literally calmed them instantly, with the tremors acting like the expensive swings we bought them. Grandpa would always fall asleep too though. If there's one photo we have duplicated a million times, its babies asleep on Grandpa. It makes a beautiful picture, buy the reality was that Grandpa couldn't stay awake to play with them.

My dad had watched my Grandma suffer with dementia in her old age, and it was very clear at that time that the memories of her illness were with him, and for the first time in my life I saw fear within my Dad as he noticed himself getting forgetful and confused. As much as the Parkinson's diagnosis had shocked and upset us all, I felt huge relief that he wouldn't 'lose his mind' like my poor Grandma had. That relief lasted no more than a couple of months. Another diagnosis was in. I didn't understand it at all, he had Parkinson's, his hand shook, how could he possibly have something else as well?

Lewy Body Dementia.

At least I had heard of Parkinson's, at least with that one I knew enough not to have to google it. Like a lot of people I use google a few times each day, never have a I regretted searching something as much as I did that day. It was like a terrible accident that I couldn't look away from; I read stories from carers and descriptions of this vile illness. Everything within me was screaming to shut my laptop but I kept reading with tears streaming down my face; confusion, forgetfulness, hallucinations... the list went on and each symptom I read broke me a little bit more.

Before that day I had worried about my Dads future, but from that moment on I started grieving. I started grieving because everything I read confirmed my concerns. The two diagnoses were meshed together seamlessly right in front of me. A piece of me broke that day.

With illnesses like that you don't get a schedule. There are varying degrees of severity that patients work their way through but sometimes people can get stuck on one for ages. A plateau. My Dad reached a plateau, and in that time I had Millie and he was able to continue working. Looking back now, that was really the last settled time in my family. Obviously we were all worried about the future, but the present was manageable. The doctors found a good balance of medication and we stopped panicking too much.

He had a hip replacement at this time, and we genuinely thought that if he could walk without pain that he would be granted a new lease of life, that maybe if he could get out in the fresh air it do him some good. Nothing is simple. The day I visited him in the hospital will remain amongst the worst days in my life. It was my first glimpse of the lewy body dementia that I had read about on the internet. He was suffering. There were no jokes, no games with heart rate monitors. Although he didn't even have a general anaesthetic, what I know now to be post anaesthetic psychosis was raging through him. Despite his medications it brought on vivid and frightening hallucinations to the point that he was scared to be in the dark or fall asleep. That evening my Dad begged me not to leave him there, he literally pleaded with me like a scared child would. There was nothing I could do. I had to leave him. He cried and a big part of me broke that night.

Some time later he recovered from the operation but due to the Parkinson's never used his new hip properly. My mum was working away in Hong Kong and my phone rang. I answered to my dad, "Hi Lizzie, I was just in the bathroom and I blacked out." He laughed, like it was the funniest thing he'd ever said. I heard the fear beneath his laughter. We went to see him and check him over, he had a bump on his head but was otherwise fine. This new symptom was very intimidating though. The problem wasn't that he had fallen, my concern was why. Why had he blacked out?

This black-out was the first of many, and marked the end of the plateau. Every time I saw him from that day on he had lost weight, it was falling away from him, each pound lost revealing a new and more frail version of my Dad. More tests were done, especially focussing on stomach cancer and it was a tense time within our family whilst we battled with uncomfortable thoughts. The reality was that a man that we all love deeply was only just beginning his suffering, would it be better for him if he could have a short sharp illness that killed him quickly? A piece of me broke when I had that thought.

For six months or so, the weight loss continued, and he became more and more unsteady. He emerged from that time entirely different. There had suddenly been a shift, the scales had tipped somehow and he was suddenly more his diseases than himself and a piece of me broke that day.

He was desperately struggling to continue with the work that he loved. My dad always told me that he would retire at 75. Always. "The reality is Lizzie", he would say, "vicars never retire". He was forced to stop at that time, and apart from a handful of sermons, he never worked again. A couple of months later we had a retirement service for him. People came from throughout the country, from various churches and communities he had served, the church was packed as he preached his last sermon. A piece of me broke at that service.

At the party afterwards there was an open mic, and people stood up and told their memories of my dad, they spoke about the ways in which he had helped them, and stories of his hillariousness. Did I mention my Dad is hilarious? They spoke about how dirty he was when he played football, how he used to play practical jokes that terrified his secretary. It reminded me that he was so much more than the frail man I was sitting beside. When I realised I had come to see my him as a person with dementia and Parkinson's instead of my Dad another piece of me broke.

For various reasons including in-laws, a broken tent and affordable housing my family as a whole migrated across the country. In their new house my Dad could have a bedroom and bathroom downstairs and my sister and I would be close by if he needed us whilst my Mum was away. Some days he had carers 3 times a day, but he still needed us. I don't know what concerned me more; how much he phoned us for little things or how much he didn't phone us for big things.

His weight had levelled out, it was low but steady. His once huge and varied appetite was now utterly diminished and he held on to the words of his doctor "eat whatever you want when you want – you need the calories", so three times a week my sister and I would take him his shopping list, always the same; horlicks, condensed milk, malteasers and 2 oranges to make him look healthy. We took proper meals too and left them in the fridge clearly labelled, only to throw them away the next time we would go round.

I could see my Dad trying to enjoy his family, but simultaneously being overwhelmed by it. Once the life and soul of our gatherings, he would often not come to the table and if he did he would slip away to his bedroom for some peace quickly afterwards.

Like me, my Dad has always been a keen writer and he had a story in his mind he wanted to write. For over a year he had been planning this story which included his three grandchildren as the main characters. He wrote the first chapter whilst he was on his plateau and planned the rest. He was convinced that he had done more however, and that somewhere in the garage was a box full of notes and plans. My Dad started fixating. The box in the garage full of his notes was one of the first obsessions, and a piece of me broke as he lamented its loss. A piece of me broke because even if the box of notes did exist and we found it – what would he do with it? Barely able to sit up there was no way he could type more than a few words, I offered to type for him whilst he dictated, "My mind doesn't work fast enough for that" he said.

A further two years went on which brings us to now. Like I say, its difficult to see gradual changes in someone you see constantly which is why I titled this essay the grief that keeps on giving. I forget you see, I get used to my Dad a certain way when he stabilises for a time. It might just be a few weeks, or a couple of months, but he still has plateaus and my cruel mind lets me forget that his are degenerative diseases. I forget and settle in to how he is in that moment, then wham out of nowhere, just like in the beginning I notice something. He says something, he does something or something happens that makes me realise hes going downhill again.

This is my Dad I'm watching degenerate. My actual real life hero. Did I mention I am a huge Daddy's girl? I'm talking about a man who when we had to move when I was in year 10, drove me all the way back to my old school every day for 4 years, it was 40 minutes away. My dad who taught me how to watch sports (i.e. with snacks), he taught me the offside rule and showed me how to get excited about watching other people running around. The man who somehow got me onto a plane to America on my own when I was having a meltdown about my gap year, the man who prayed with me and supported me for 30 years whenever I've been scared or worried. The man who noticed that I was desperately depressed, even though he was ill, when no one else did.

The thing with diseases like this, you can't plan anything, and you can't feel anything. How am I supposed to feel right now? My Dad is alive and I can talk to him and he can talk to me back. I have friends who would give anything for that privilege. My Dad is alive, but every day he is less my Dad and more his illnesses. This is the grief that keeps on giving, because every time I think I have come to terms with the sentence that has been placed on his head, I realise that actually I haven't, not even a little bit, and another piece of me breaks.

The thing with diseases like this is that nothing makes any sense. How can you miss someone who is sitting in the same room as you? Also how can he remember every word to most songs written in the 60'/70's, but not remember what he had for breakfast an hour ago?

The thing with diseases like this is that the steal what you love the most, from right under your nose. They have stolen so much of who my Dad is. They have stolen my mum's husband, they have stolen my daughter's grandfather, they have stolen him, but somehow left him behind.

The thing with diseases like this is that even though they steal from you, they taunt you too. Every so often they let my Dad come back, just for a few hours here and there. They let him back and we are shown tantalising echoes of who he was and who he should still be. I watch him on days like that and a piece of me breaks every single time, because I know that I should live in the moment and enjoy it, but I can't because I know that when I wake up the next day he will be gone again.

Through the relentless confusion, and barrage of other symptoms lies one small mercy. It is very very small, but I am thankful for it. My Dad has no idea how ill he is.

My friend sent me a photo the other day, and one quick glimpse broke me. The photo was taken in Italy, me and some of my family are sitting at a table having lunch, my Dad had been diagnosed but was still more himself than the illness. He is in the centre of the photo smiling, his face round and healthy and there is a wotsit in his ear. Did I mention that my Dad is hilarious?

He still is. The Parkinson's nurse came round the other day and my sister and I sat with my mum in the appointment. "Do you mind talking about your bowels in front of everyone?" the nurse asked. "Its fine" he said "they could do with a laugh".

The thing with diseases like this is that there is no timeline, no schedule. We know he is entering the last stage of Parkinson's. The last stage. It doesn't sound good, but how long is the last stage? I don't even know how his dementia is measured, but every day he is more confused than the last, every time I speak to him now a piece of me breaks.

The grief that keeps on giving, continues to give relentlessly.


What am I?    back to top

I thought authors spent their days sitting writing avidly at beautiful desks in inspiring places; sipping sophisticated coffee based drinks and oozing intellectual creativity. I thought once in a while they might go to a coffee shop, sit in the corner mysteriously and pour their soul out in words whilst the chaos and noise happens around them. I thought authors were disciplined, working a set number of hours a day, writing a set number of words. I thought authors were grammatical nazis, I thought they loved punctuation and went everywhere with a red pen, itching to correct someone.

I am signing up to join a new dentist.

"Occupation?" the receptionist asks.

I open and close my mouth repeatedly whilst my mind goes blank, despite the flurry of activity. What do I say? Am I between jobs, am I a stay at home Mum, do I work from home? There's no way I can say I'm an author.

"Housewife" I reply.

The word is out there before I realise what I'm saying. What even is a housewife in this day and age? I am a wife, I stay at home, but I'm sure the state of my kitchen would argue against the term 'housewife' with its scouring and dusting connotations.

How could I possibly say I'm an author? My boring Ikea desk is stuffed in the corner of my daughters playroom, cluttered with bills, Barbie accessories, and failed attempts to copy Pinterest creations. Instead of writing avidly, on average days I sit at my computer and write a thousand words at most, often in the full knowledge that I will delete them the next day. On a bad day, the word count plummets to seventeen. I can't do punctuation. At all. Its so bad, I actively avoid the keys on the right of my keyboard in case I accidentally hit a semi colon and it changes my whole story.

I don't even like coffee, regardless of how much milk and syrup is put in to camouflage the biter taste, to me it still tastes like I'm not grown up enough to drink it. In my quest to be a real writer, I went to a local tea shop one morning. I hoped to find inspiration whilst living out my dream and sitting with pen and paper within its comforting pastel walls. In reality, the noise and bustle was too much and instead of writing, I spent four hours watching people come and go, whilst drinking tea and eating cake that I couldn't afford.

Those thoughts have been going through my head for the last eight months. Who am I - what am I?

Then suddenly I did it. I wrote the two words I thought I would never reach...The End. Suddenly there was a book before me. 100,000 words that I painstakingly wrote. Each one considered, each one a brushstroke towards my masterpiece. In two weeks my masterpiece will be published. Maybe people will read it - maybe it will only ever be me and my editor that reach the end. Maybe people will like it, maybe they won't; but whatever happens next, I have achieved what I have set out to do - I have earned the right to call myself an author.

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