Seek the stars

“You disappeared!” I was told, a couple of weeks ago. Looking back now, I suppose I did, and if you’ve missed my ramblings and wayward words then I apologise. It has been a busy and exciting summer, full of things that one day, when I give myself a second, I will reflect on properly. Things like A levels (thank everyone and anyone that they’re over), resting, reflecting, travelling, studying, losing, gaining, saying hellos, saying goodbyes, giving of time, energy and love, receiving of the same. But summer’s over. And something’s changed. At least for me. I’m in a new phase of life – exciting, daunting, dawning, terrifying. We’ll come to that too.

But today, I don’t want to look back. And I’m not sure what the future has in store – I can look forward, but not clearly. So today, I want to look at just that, today.


We’re always told that tomorrow is a new day. And it is, a new day dawns, full of the beauty found in the hope of a new sun rising. A new tomorrow, a new world, a new chance. It’s really important to have that ability to look forward, and know that tomorrow is a new world of opportunity. Tomorrow can be the key. Or a new page. Or even a new book. Tomorrow is the light.

But where does that leave today? Surely, by logic, today is made the darkness? And how can we live for today, when it is only tomorrow that has light?

That’s where I was stuck on Monday.

Monday was the day where autumn really came knocking. The rain picked up, the skies were grey, J was back at school, there was a thin covering of brown leaves on the grass, the house was empty, there were (well, there still are) lists and lists of jobs and chores to be done. And piles of books to be read. I felt like I was washer woman, chef, student and taxi driver all in one. I’d just come back from a week of sun, sea and sand. And I was here in the rain, rattling around, running about, trying to get finish all of X, Y and Z, but not really feeling motivated at all, appreciating the quiet, but somehow feeling lonely too. I love autumn, it’s one of my favourite times of year. But I wasn’t feeling it on Monday. And in the blues, I wasn’t alone.

It was fine, I thought. Tomorrow will be better. Tomorrow will bring the light. I just need to sleep through the night, and everything will be fine.

Was it? Not really, no. My morning started off with bloods. Lots of bloods. It’s one of the hardest things for me to do in weekly schedule. It’s stressful – I’m not allowed to eat before they do it, and that’s not great for a Diabetic. I’m usually trying to work out just how long I’ve got before I have a hypo. I’m thinking about whether I’m at a safe level to drive. I’m thinking about when and where I can eat before I make the journey back. I’m thinking about how, when I do, I will subtly give an injection in public. That’s on top of the uncomfortableness and fear that any normal person might experience having bloods taken. Normally, it’s OK. At least, it gets done. Sometimes I take someone with me, sometimes I go alone. They insert the needle, fill the vials and it’s job done. Off to the lab, and the results wind their way in in a few days.

On Tuesday, it wasn’t OK. I am notoriously difficult to bleed where I should – and they couldn’t find a vein. They inserted 6 different cannulae, and it took 6 goes to even get a tiny bit of blood. It wasn’t enough. Even after the second failed insertion, I started to feel my heart pounding in my chest, I felt disorientated, and upset, and afraid. I get triggered like this about once a week now, though sometimes it’s more. When it happens, it’s like I am right back in hospital on Easter Sunday. I can hear the conversations between the Doctors : “We can’t find a vein.” “We need an ultrasound.” “We haven’t got time.” “We’ll take her in ICU – let’s prepare for a central line.” I see it all again. My body shutting down. Dying. I hear it. I can’t explain how terrifying it feels. It’s when hurts the most. When it feels real again. The psychologist calls it PTSD. I avoid more labels.

But that moment, that today, became a new darkness in the shadow of another tomorrow. For an hour or more I sat in the surgery and couldn’t see beyond that night, almost 6 months ago. I didn’t feel safe. I don’t think anyone there quite understood why I was so upset. It wasn’t the bloods. It wasn’t the pain. It was the memories. I was completely alone, and the trauma of what I went through was setting in again. It took an hour for them to be able to take the bloods, and I was so tense that I have a pretty nice set of bruises up and down my hand, wrist and arm.

By 8:30 in the morning, Dad had left work, walked to the station and drove me home. I was sat in the car just shaking. I was done for the day. Flashbacks completely tire me. I wasn’t out of my pyjamas – which 18 year old goes to a 6:30am blood test ready for the day?! – and I didn’t feel like getting out of them. I went back to bed, and decided to do the day’s jobs from there. This was the second day in a row I had felt like this.

Did I believe tomorrow would be better? I don’t think I did. I promised myself it would be, but Tuesday was no better than Monday. Who’s to say Wednesday wouldn’t just be another broken promise of light?

So, what happens when today is full of hurt? What happens when tomorrow is worse? I find it really easy to slip into a downwards spiral, especially when I’ve had a flashback of trauma. Today becomes the darkness, and the promise that tomorrow is light seems as childish as the belief that kissing a wound will make it better. Because the pain is still there. It still feels like somewhere, underneath it all, it will always be there. It can’t just vanish in the night, however pretty and hopeful the dawn may seem, a mix of bright colours streaked across the clouded sky, the sun peaking its head above the parapet of trees. Pain remains, bitter, black, blue, bleak.

Yet somehow, I go on. With the support of friends, family, my psychologist, my nurses, my Doctors, my faith, I go on. I go on. Every day, good or bad, I will go on.

I go on because I can’t live like in darkness, although it’s all too easy to do. And luckily, I’m fight at a point where I find light a choice – I choose to take today, run with its highs and lows, accept the inevitability of days of pain, and still manage to find the positives. But what happens when the pain isn’t your choice? Can you still find the strength to live in today? When you’re hurt, tomorrow’s light is false – you need light today. And today it takes a lot more strength to choose to see light: the light we have to find, or if we’re lucky, someone else will choose to give us.

I can’t promise answers. Yesterday, I saw no hope for answers at all. Sat in the surgery, there was no way out. But I think I was looking too far ahead; I couldn’t see today. Did I notice the child playing with the trains I used to race when I was her age? Yes, but I, angrily, didn’t see her joy. Did I find hope from the care that everyone paid to me, the offers of tissues, water, and space? No, I just wanted everyone to go away. Today had become dark, and that had become that. But I failed to see those moments of light, and after those moments, I struggled to live for that day. Yet somehow I take strength from the fact that I now see those moments as ones of hidden light. That shows me that somewhere, I saw them then. There is always hope, somewhere, however much you try and ignore it.

In days of extreme darkness, I choose to find small glimpses of light, either that I give  or see for myself, or others give me. It’s an easier choice. I don’t have the strength or energy to always find a moment of light equivalent to the pain. I do still have the strength to choose to find and hold the little moments. Who knows, they might accumulate, they might appreciate, to more than the hours of pure darkness.

Over the past year I’ve come to realise that there are so many little moments to live for in the today. I’ve called them extraordinarily divine moments in the ordinary. But they can also just be tiny seconds, little things that make you think: “you know what, I can still make today worth living, however many needles they stick in me.”

I try to make the little moments like stars in the sky.

After the succession of Monday and Tuesday, over the last few days I made a list of the small things that made me marvel at life, and living life. And when I did it, I proved there was so much. And every time I saw something that made me smile, or think, or reflect, or cheer, or laugh – I saw the value of today.

A feather gently floating down on the gentle breeze, and coming to rest just for a second on the windowsill before bringing a soft hope to some other place.

The silvery track of the smallest snail which had ever so slowly, but surely worked its way from one end of the patio to the other. Perseverance in action.

The scent of vanilla on the wind from a plant somewhere so far off I couldn’t hold onto it for more than a second. A passing sweetness.

The crunch of the leaves starting to fall under my feet; the promise of more to come.

The sense of freedom as I hurtled down the hill on my bike; the satisfying relief in my muscles as I reached the top of the same hill on the return.

The enjoyment I found in writing, and reading, words. Puzzling over how placing different letters in different orders can have the power to move. Writing the same words in different languages, to play with form, sound, and power.

The strange comfort in working through grammar and coming up with fluent and poetic translation.

Watching molten lava ooze and bubble and float and sink.

The amusement of writing notes in a language no one else understands, and watching them trying to figure it out, the while knowing they are hoping to decipher some old maxim, when actually it’s your to do list, starting with: ‘change the bed’ (την κοιτην μεταφερε)

Submerging myself in blankets and duvets, and heating up a hot water bottle for the first time in the year, while watching the spitting rain spatter itself on the window.

Tea. Lots of tea. More tea.

Thinking about music, and words, and how they fit together, shape each other, inspire each other and reflect each other.

A day where there is absolutely nothing written down to do in the diary, and you have the freedom to work through everything at your own pace.

The joy on my brother’s face when I turn up to collect him at school each day with millionaire’s shortbread, and our chats about everything and anything on the way home; getting stuck in traffic and both spontaneously singing along to the iPod at the same time.

The coincidence that a phone provider transfer is taking place, and so alternative (and probably more advanced!) technology is used instead, leading to a surprise face to face conversation, appeasing loneliness, reigniting confidence, firing friendship. Reflection, reaction, return, resolve.

The excitement of getting things finalised for my move ‘oop NORTH.’

Washing up. The bubbles, particularly. The same with the bath.

The catharsis of water in the shower hammering on my head, and washing away the dirt.

Sharing art and finding encouragement, criticism, support, ideas and direction.

Welcome in an old parish church, coming to an old home and feeling like a small part of you that has been lost has found itself again.

Waking up as the sun hit the rim of the mirror, casting a rainbow on the opposite wall.

The incredibly terrifying but somehow reassuring realisation that the shadows of two people have been crossing for years and years, without them ever knowing, until suddenly they burst together, and realise how much their lives fit together.

The somewhat sadistic pleasure in knowing that ‘Facebook’ thinks it’s being clever, and knows something you don’t – when in reality, it’s slightly off the mark.

Celebrating years of friendship, watching friendships bloom, grow and flourish.

Someone giving time for someone else, and seeing their eyes sparkle with an unspoken appreciation, shared mutually.

An old lady’s face light up as she treacherously crossed the road, realised she’d made it safely (it wasn’t guaranteed), and settled down at the bus stop, contently waiting.

Waking in the silence of the night and hearing the buzz of snoring from a room down the corridor; the assurance that others were safe in their dreams. A stolen moment of peace, tranquillity and safety before drifting back into my own suspended time.

Finding the strength to do something I never believed I could do; slowly breaking my chains from hospitals, GPs, and nurses and living for myself.

Smiles, where there once were only tears; the assurance that one day it will get better. The assurance I am not alone. Assurance.

Tomorrow may be the light. But it may be no more light than today. It’s hard. But if you can, even if briefly not in the moment itself, hold on to that knowledge that today, and every day, is worth living. If you can continually make tomorrow brighter, then go ahead. But I think humanity’s very nature is to have todays and tomorrows and days-after-tomorrow which are just as rough as each other. If we forever displace light into the future, we risk losing the stars in the day. Sometimes they might not be enough to always purge the darkness completely. But the stars make the night worth waking for. The starlit moments of today make your life worth living today, and not just tomorrow.

I hope, whatever afflicts you, and however great, you can take today for the joy that it will hold, somewhere, however concealed, turning from darkness that holds you, and seeking the stars which shine as a light in the world. If tomorrow is brighter, may you look on today as still so bright. May the darkness not apprehend. Find your stars. Seek the stars.

” Stars, though dying, grow brighter still. Their light belies their death. ”

~Written July 2018


 

This week saw World Suicide Prevention Day, on 10th September. It was one of the things that made me want to share what I write again. I am so grateful that I have never been in such great darkness as to ever contemplate taking my own life. But unfortunately, and sadly, for someone who is only 18 years old, I have several friends who have. And I know that it’s incredibly hard to reach out for help, and incredibly hard to talk.

So I will reach out to you, if you are at the bottom of the black pit of darkness, and the clouds are so thick that the starlight is hidden. I will tell you that there are people who understand. You are not alone. You can be safe again. You are most definitely loved for all you are, have been and will be. There is a future ahead.

If you want to talk, there is always someone who will listen. It may be someone you know, it may be someone you don’t. Choose whoever helps you, whoever makes you feel most safe, and most comfortable. If you don’t know where to turn, turn here:

https://papyrus-uk.org/

http://www.sane.org.uk/?gclid=CjwKCAjwuO3cBRAyEiwAzOxKsuaSII2A7fb09unlOLQ5BcRY8AMv5owA41SSHvr8NZWxsFSvdbuazBoCGuwQAvD_BwE

https://www.samaritans.org/how-we-can-help-you/contact-us?gclid=CjwKCAjwuO3cBRAyEiwAzOxKsuYsPIgvMcVj6ZKrd3jURXL1NEu3B4KWKLB859LwRPq8NRm9sXsQhBoCitAQAvD_BwE

https://www.mind.org.uk/

Call them – any time of day. They will be there to listen. When you are ready to talk, they are ready to listen. You are not alone, and far stronger than you think – the clouds will pass, and the stars will be seen again.


 

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Mail from Maryland: its more than Maltesers…

It’s coming to the end of Diabetes UK Awareness Week. And that’s something I never thought I’d have to talk about on here. But here I am. And this is now a part of who I am. And as much as I find it difficult talking about this at the moment, I refuse to lose my voice, or submit defeat, or try to hide. This post follows my internal thoughts as I reflect on questions or statements that I have received, many daily. All these are true. It’s hard to share, but it also feels good to share, not for pity or sympathy, but merely for awareness.

And if it helps you understand me a bit better, or perhaps give you an appreciation of anyone who is chronically ill, then I’m willing to take the chance, because I don’t want anyone else newly diagnosed to have to think these dilemmas over and feel like they are alone. And I would hope that society can change to be more sensitive, and more understanding. But equally, I realise they can’t do that without us being honest. And, fittingly, this year, Diabetes UK have called on people to share their stories, talk about Diabetes, its perception and its complications. So here we go.

Warning – this is quite long… but this is because this is also a record for me, to work through some of the emotions and difficulties. So feel free to skip and skim, I don’t mind at all 🙂  If you would like shorter, more literary or more abstract reflections on chronic illness, you’re probably better off here and here.


1. “I didn’t know you had Diabetes.”

Well, to be honest, neither did I until very recently. I am now at the 75 day, 2 and bit months mark. It’s still new. From my HbA1c results, blood tests which show Diabetes control over a 3 month period, it seems I could have been developing it for well over 3 months. A good HBA1C will range from 48-58 mmol. Mine is currently 99, though when I was first admitted, it was 123. So yeah, I have Diabetes. But we didn’t know. Before you say it – I didn’t experience any of the normal symptoms: increased fluid intake, increased urination, dramatic weight loss. I was just tired. But at that point, I was in the middle of studying for 4 A levels in amidst all the other chaos of life. I was allowed to be tired. We didn’t know.

It all changed on Easter Sunday. I was away, trying to escape A levels for just a quiet weekend in the country, walking with the family, eating roast dinners, ticking off another Cathedral on my list, and celebrating the resurrection in a tiny parish Church, fulled to the brim with the faithful, the strains of ‘Jesus Christ is risen again, aaaaaaaaalleluia’ accompanying the background moo of the cows in the next door field. That was how it was supposed to be. It didn’t quite go to plan.

I’m not professing to be the fittest girl on the block. Not by any stretch of the imagination! But standing up to sing hymn is well within my regular abilities. In fact, I do it pretty much 8 times a week. On Easter Sunday, in that idyllic little Church, where the Lady of the Manor stands with a basket of foil wrapped Easter eggs to follow Communion, I could not stand to sing a hymn. I couldn’t even stand, let alone stand and sing. My breathing got faster and faster, and then I couldn’t breathe. I couldn’t do anything but collapse in a heap. I don’t remember much of what followed, until I woke up in intensive care in hospital on the Tuesday morning, in bed 1, labelled ‘Critical condition,’ with only a hazy recollection of being poked, revived and jabbed in a resuscitation room. Two Doctors, Dr James Orr (Dr Jim), and another affectionately labelled ‘Dr Chirpy Cheeks’ by my parents (heaven knows what his actual name was), sat me down, looked me straight in the eyes and said: ‘your life isn’t going to be the same again.’ Ward Round always carried a sense of fear from that day onwards. That’s when I found out.

More thoughts on this experience and diagnosis are found here.


2. “But you don’t look like you have Diabetes”

Really? Well I guess that’s a compliment? Or not. What should a diabetic look like? Are we supposed not to look normal? Or do you mean that I don’t look like how the media portrays diabetes? The media makes diabetics feel like a failure. They make it seem like all diabetes is caused from over-indulgence in sugar and a lack of exercise. Obesity is pinpointed. It’s just not true. And it’s not fair. 90% of Diabetics are type 2, sure. But type 2 equally has a range of causes, not just obesity. It’s not fair to judge someone like that just because of their diagnosis.

I’m one of the 300 000 people in the UK who make up the other 10%. The Type 1s. Type 1 has no one known cause. It’s triggered by an autoimmune disease that no one can quite pinpoint. It is more likely in people who suffer from a virus simultaneously to a period of stress. There is 0.8% chance there is a genetic predisposition. But it is not hereditary.

So yes, I don’t look diabetic, because I refuse to let ‘diabetic’ define me. But also, no, I would contradict you and say that I think I do look diabetic. Because diabetics look just like you.


3. “But it’s just an eating thing, no big deal”

Actually it kind of is a big deal. Especially at the moment when it’s all so new. I woke up on that Tuesday in the hospital and it felt as if life had come crashing down. Yes – I am so grateful now that I have a condition which is manageable. But it has no cure, and comes with many complications.

So it is a big deal. A lifelong deal. And a deal that there is no answer to. My blood glucose changes day by day, and not just on what I eat. I have had two pieces of buttered toast with marmite and a cup of tea, basically every single morning for breakfast since I have come out of hospital. I don’t think I have ever had two readings 2 hours post breakfast that have been the same. It varies on the weather. It varies on my activity level. It varies on my mental activity. It varies on my stress level. It varies on how I’m feeling. It varies on how much sleep I have. It varies on the time of the month, on the time of the day, on the time of year. It’s impossible to predict. You just can’t. I have to check it at least 8 times a day, and mostly more.

And it’s not just about eating. For sure, I count carbohydrates, calculate an insulin dose accordingly and give it. I test my blood sugars and ketones daily. There are safe ranges and unsafe ranges, and it feels a bit like walking on a tightrope to try and keep within range. Most days I start off low, and by the end of the night I’m soaring high. I have to treat lows and highs. That’s the bit that most people are aware of. And most people are aware that I can’t just eat whatever I want whenever I want it. I have to eat meals, and really nothing in between. I can’t let anything pass my lips without considering counting the cost. And last night, all that I could have for dessert were 5 Maltesers. They looked pretty meagre in that tiny bowl. And it was really hard to watch my brother measure it out on the scales. This isn’t just changing my life, it changes everyone’s. It hit me a bit, but maybe that was also because of the wine..! But this is also so so much more than Maltesers.

It’s about the time it takes. 10:30 every Saturday morning, you’ll find me in the surgery, having a weekly check up.  It takes about half an hour to walk there and half an hour back, and I usually spent at least half an hour there. My blood pressure is low. I’ve lost more weight. The checks go on. Over half term, I spent two days in hospital. I have meetings with DSNs (Diabetic Specialist Nurses), Diabetic Consultants, Dietitians, Ophthalmic Consultants, Podiatrists, and for the last few weeks I’ve spent time in Phlebotomy getting drained of more bloods, and I have had to have IV fluids of Potassium and Magnesium Sulphate.

It’s about the complications, though much of it is precautionary. I am at risk of developing a loss of sensation in my hands and feet. I am at risk of a form of blindness. My eyesight has deteriorated so I wear my glasses permanently.  I lose approximately 1kg of weight every week. I am a lot weaker, and get tired more easily (though the plus side is lots of naps!). I have low blood pressure, and my electrolytes are having a heyday, revelling in the chaos they are causing. I may be developing Coeliac disease, and I am anticipated to develop thyroid problems in the future.  I am losing my hair at a stupidly excessive rate. I bruise super easily, partly due to my pre-existing blood condition; you would have been forgiven for supposing I had had a tattoo when I came out of hospital, had you seen my left arm, dark purple with green tinges around the edges, from the elbow downwards, an effect of all the cannulae and injections.

My long acting insulin (I have two types) is currently not working as it should, and I am developing insulin resistance, but I can’t change until after my exams are over (2 more weeks…) which means I am gradually experiencing great pain when injecting, and a sharp stinging response to my insulin which lasts about 10 minutes after each injection. I have to up my insulin by two units every two nights to counter resistance; I started on 8 units, and I am now on 33 units. But every time I increase, there is a risk that I will hypo during the night. So most nights, I have to wake up at 3am to test my blood sugars. Once a week I should do it more often at night. It’s exhausting.

And for everyone who asks me ‘does it hurt?’ when I inject myself, I’m lying when I say ‘you get used to it.’ At the moment it still feels very unnatural to jab myself with a 6mm needle 6 times a day. And yes it hurts, whoever only felt ‘a sharp scratch?’ There are more bruises to prove it…

There’s a lot more to this than eating. And that’s just the practical side.


4. “You’re ill? But you look so well, better even!”

I guess so. Who tries to look actively ill? Some days are better than others, I grant you, but I don’t try and look ill. Truth is, I’ll be ‘ill’ for the rest of my life. I don’t want to be. But I don’t get a choice. So I choose to look well, even when I feel down.

There’s an outside, and there’s inside. There are a few people who see glimpses of the inside. The me when I’m so angry and frenetic that I don’t know where to turn and I sit and cry in the middle of a concert. The me that breaks down on the sofa, surrounded by my revision notes, frustrated that I’ve lost so much time. The me that is struggling to come to terms with the fact that this doesn’t go away after a bit of treatment, that this will affect every ounce of my life henceforward. The me that wakes up at 5:30 am on a Saturday with a hypo when I was angling for a lie in, is forced to down food when feeling incredibly nauseous, and then collapses on the chair in the living room, just staring out the window because she can’t get back to sleep for fear that next time she won’t wake up.

The me that doesn’t always know me anymore. Because the me I saw myself as in my final few weeks of school, enjoying A levels and summer concerts, and ending my school career on a high, is far from me. The me of today has to be in separate invigilation, take enforced rest breaks and spent the last few weeks of lessons desperately getting through as many lessons as possible before going home to sleep all afternoon because I was exhausted. The me who eventually admitted defeat on a 100% attendance record, and only did 3 days a week. The me whose university offer, once more than achievable, is now thrown into question, and for whom deferring by a year is increasingly recommended. I don’t want to, but I’ve lost control. Who sees that me, so frustrated, so angry, so confused, questioning why me, questioning why now, questioning what I did wrong? Nothing, I know, could have stopped this. But that doesn’t stop the confusion.

Maybe only myself knows me. Because I have a strong outer person that knows how to say ‘it’s fine’ or ‘I’m doing OK’ or ‘yes, I’m better now.’ A strong person who doesn’t want to burden other people with all the inside stuff. And I’m only beginning to get there, though I know one day I will. But as far as it goes, I will never be ‘better.’ Or at least, ‘better’ takes on a new definition. I may look well. Most days, now, I even feel vaguely well. But please don’t tell me that “I know you’ve been diagnosed with Diabetes, but you look well, better even!” Because you don’t always know what’s going on inside.


5.”Can’t you just forget about it”

Oh boy do I wish I could. And sometimes, just for an hour, or an afternoon, with particular people, or doing particular things, I do. I feel absolutely myself again. And that’s how I know I will get to a point eventually, where this isn’t such a big deal, and can just be another part of me. But it will take a while to get there.

Right now, it feels like there is a big before/after divide. And I hate describing it like that, because it really doesn’t help. But that’s sort of the only way I can think of to describe it, or via the jigsaw puzzle explanation. Places I go to regularly are now fringed with new dangers, and it’s difficult to go back to somewhere where you’ve always felt comfortable, and now don’t. My independence is challenged. I can’t just do things that, before, would not have been an issue. I have to re-learn how to drive. It stops me from going out to certain places alone, taking up opportunities my way, travelling in certain ways, and staying in certain places.

And, at the moment, the times when I think I can forget are the times when I am most vulnerable. If I don’t check my blood sugar, I don’t know how close I am to being hypo, or hyper. If I don’t give my insulin, I will go hyper and be so fatigued that I will just sleep all afternoon. If I give too much insulin, by even a unit or two, I risk my life. My insulin cannot get to over 25 degrees, or below 0, or else the hormone doesn’t work. So it’s quite important I don’t forget the practical stuff.

And it’s hard to speak about, but what I went through in hospital classifies as both medical and mental trauma. So there’s a lot of mental stuff that I also can’t forget.

It’s hard to forget lying on a bed, in intensive care, being told that you are in a critical condition. It’s hard to forget a Doctor covering your face with a sheet, closing you in and coming at you with savage looking equipment to cut open your neck and insert a line to give you fluid, because ‘if we use the wrist cannula, it will be too late.’ It’s hard to forget being moved from the ‘critical’ bed into the regular intensive care unit, but being told that ‘you’re by no means out of the woods yet.’ It’s hard to forget the first time someone tells you that you’ve got a condition that’s got no cure, and you will have to learn to deal with it because otherwise you will die. It’s hard to forget coping with that, and then someone telling you that there are no real answers. It’s hard to forget seeing your parents cry and that they butter and feed you your toast and send texts on your behalf because you don’t even have the strength to hold a piece of bread. It’s hard to forget lying there, quite conscious, whilst the man in the bed next to you passes away. It’s incredibly hard to forget that it could have been you.

So no, at the moment, I can’t ‘just forget.’ And actually, whilst I’d like to manage how I remember, I don’t think I want to ever forget completely, because knowing how frail life is has made me cherish it all the more these last weeks.


6. “I wish I could lose weight as fast as you have.”

Well I wouldn’t wish it on you for all the world. This is not how you want to lose weight. And I know maybe my weight loss is all you see. But it’s not glamorous. It’s having one pair of jeans that fit, and everything else vigorously pulled in with belts. It’s suddenly having your school suits not fit, and being safety pinned into your skirts and drowned in your jacket.  It’s losing muscle strength and it taking a lot more energy to open a door, or lift a heavy book. It’s not being allowed to do strenuous exercise or go on long walks. It’s being advised to use a wheelchair for the week after I came out of hospital – I didn’t, but I should have done. I am building up my strength, but this is never something you want to go through.

And who says I should ever have wanted to lose this much weight? This weight loss is not desired at all. It’s a result of medical trauma. So why are we, as a society, constantly pressuring people to lose weight, and congratulating them when they do, when it’s not always something to be proud of? (More on this here) Just think about it – could that person be struggling, or is there something else going on? Is this their choice? Is what you are about to say going to make them feel self-conscious, or uncomfortable in their body, either how it is now or was before? Just think it through.


7. “At least it’s happened to you. I mean it’s bad timing, but A levels were always going to be a breeze for you, so just chill”

Thanks. I guess that’s another compliment, that you think I’m smart? Once I might have agreed with you, that with all the two years worth of work beforehand, and at least a month of concentrated revision, A levels shouldn’t have presented an insurmountable challenge, though I don’t think you can ever class them as a ‘breeze’ for anyone, no matter how well they perform on a regular basis. But now, well now it’s different.

Now I have missed out on approximately the nine preceding weeks before my A levels. Much of what I am relying on to get me through each paper is the initial work I did in Lower Sixth, and a morning or afternoon of massively crammed revision prior to the exam. And don’t get me wrong, I’m glad I put in the work then, and that I have it to fall back on, but this is not the only thing that I should be relying on.  It’s not fun. And this would not be how I would choose to do it. It makes the whole experience so much more stressful. It’s frustrating to look at a question and think, ‘if I’d been in class in those last few weeks, I would have gone over this’ or ‘I’ve actually never done a history source question of this type before, because when they did practices, I was in hospital.’ It’s frustrating. It’s certainly not a ‘breeze.’

And I can no longer just go and sit an exam. I have to eat directly beforehand. I have to be in a separate room, with a separate invigilator who sits and watches me for any sign of descent into hypo. Within 10 minutes of my first exam I had to be stopped because my hand was shaking. Even if I exhibit no worrying signs, I have to stop at least every hour to check my blood sugar, if not every half hour. Stress and mental power uses up a lot of sugar. I have to take with me a whole box of different types of acting glucose, meters, insulin, needles, lancets, lancing devices, ibuprofen and drink lots of water. 3 hour exams tend to take at least 4 hours. My invigilators and I have a red phone which has the nurses and 999 on speed dial. I get home and collapse, without the energy to carry on for the next exam. The process is isolating, and it’s frustrating. But I need it. And I’m halfway there now.

But what’s also stressful is not knowing how it could turn out. We have absolutely no idea what my grades will be. My predicted grades were based on me working as I would have done, flat out, in the last weeks. That didn’t happen. Grades are up in the air. I can apply for special consideration, but it will only up me a maximum of 2%, and I can only apply for it to apply if I have a hypo or exhibit signs of deterioration during a specific paper. As a lifelong illness, Diabetes doesn’t qualify under recent illness or bereavement, since you should have been managing it forever. It doesn’t seem take into account what happens if it’s all new. We have no idea what is going to happen in August. And although I keep telling myself it will all be fine, it’s not exactly breezy.


8. “When does it stop?”

Easy answer: it doesn’t. Charities like JDRF are researching to try cures for Juvenile Diabetes Mellitus. But there is no cure yet. We wait.

We can manage it for the moment, with subcutaneous injections, IV fluids and blood glucose monitoring via finger pricks and monitoring strips. I carry these, and my hypo treatment with me everywhere. I have a medical ID wristband to identify me should I pass out alone, or be treated as drunk when I am having a hypo alone and in public. My insulin has its own passport, which I have with me all the time, and especially when I travel. It doesn’t go away.

My specialist team are hoping that I will qualify for some new whizzy devices that continually monitor glucose by having a sensor permanently on your arm, which you can swipe with a reader and it will not only give you a reading but show you a graph, and see whether you are trending up or down. I may yet transfer onto a pump system which can calculate your dose and administer insulin automatically. But that’s all the future. And it still won’t stop it; it’s only about management and control. I’m Diabetic 24/7. There’s no escaping it.

People usually remember that I’m diabetic only when I’m eating. And then they think that’s all it is – a food thing. But I still have diabetes when I leave the dinner table. I’m diabetic when I wake up and when I’m sleeping. I’m diabetic when I’m stressed and disappointed, excited or in love. Angry and ashamed or lonely and hurt. It doesn’t go away when I put the cap back on the syringe. It does not retreat once I fall to sleep.   ~An anonymous T1D


9. “Stop eating that, diabetics can’t have that”

Ah – this is a fun one. I can, technically, eat anything I want. So please don’t try and make decisions for me; I will tell you if I can’t eat anything. Some ‘diabetic’ food can also contain chemicals which act a bit like laxatives…so is best avoided, though Boots’ ‘no added sugar’ chocolate and shortbread have been life savers in the last few weeks, with half the carb value of normal brands. But I just have to be careful.

And sometimes it is harder for me if you try and avoid carbs, because at the moment I do need at least a small amount of carbohydrate with everything I eat to help me calculate a dose, as well as to keep at a stable weight. I have a book with lots of fun pictures of different size portions of food, which is helping me judge quantities without having to weigh all my food and on a day to day basis I work with a specialist dietitian and my school catering team to eat food that is both healthy and enjoyable! The only advice I’ve had and heeded (!), is that I should avoid chocolate, ice cream, and cake. But once in a week, and maybe twice, it’s ok – and whilst I can’t just snack freely or eat with no restrictions, if I want some chocolate, and believe me, there are times when all I want is a square of chocolate or 5 Maltesers, I will factor it in!

It often makes me feel more self-conscious of what I am eating, and makes meal times generally more stressful than they already are, if you stop me from eating what I feel comfortable eating. So trust me, although it is new, I do vaguely know what I’m doing, and fear not – I will speak up if something’s not right, or ask for a bit of bread with my salad 🙂


10. “You’re a bit of a mess, then, huh duck?”

Yep, someone said this to me. It was probably a side comment, and I’m not going to get mad with people because they don’t understand. But telling me I’m a mess goes to my head. It makes feel messed up. Different. Alone. A problem. It brings everything back. It makes me remember the things which are hard to process. It makes feel like I’m going to a mess for the rest of my life. For if I’m a mess now, so shall I be in 5 years. In 10 years. In 20. And who wants a mess in their life?

Maybe I am a bit of mess. I am still trying to learn, trying to process it all mentally, and trying to talk about it in a way that is helpful both to me and those around me. I don’t want to be a mess. I don’t want to cause mess. I don’t choose to create mess. But this me. And maybe it is messy right now. Maybe it still will be in a few weeks, and in a few months. Maybe even in a year. But it won’t always be messy, and I won’t always be coping like I have to now, with everything colliding at once. I’m stronger than mess.


11. “It’s a bit of a pain to be around you at the moment.”

Tell me about it. I feel guilty every day for feeling like a burden to those around me. It’s really hard to feel like you are responsible for someone else’s heightened fear. Or to feel like you are bombarding them with a load of information that they might not understand. It is hard to know that there is the chance that you might not wake up every night you go to bed, and there are people out there who are also trying to cope with knowing that. To feel awkward before going into the canteen every day, because I have to slip out to test and medicate, and count my carbohydrate intake before I eat. Their food gets cold, and so does mine.

Most of those around me day to day tell me that they don’t feel like it is a burden. And as the days go on, we settle into a new routine where there is a trust that I will say when and if things go wrong, but that I have enough independence to deal with day to day management. But it doesn’t stop me from being struck by guilt if I am out alone with my friends. The thoughts run through my mind: would they know what to do if I started acting like I was having a hypo? Would they recognise it? And the worst of all: with all this going on, I hope they can see that I am deep down still myself, even that I am trying to grow to be a better and bigger person because of this, trying to understand and develop the compassion to help and reach out to others in a similar position. I hope they don’t think, with all this going on, it would just be easier to continue gradually walking away. Because that would break my heart.

It’s hard. But it won’t be like this forever, and I would trust you with my life.


13. “But your Mum has Diabetes, so it’s not really an issue for you.”

This is something I get a lot. And it’s actually quite a rational argument. My Mum was diagnosed with Type 1 Diabetes when she was 15. It could be that I have a genetic pre-disposition to the condition. But as I said, there’s hardly any evidence to suggest it is directly hereditary. Anyway, it’s happened, we can’t change it.

In some ways it’s great. She knows what it can feel like to be in hospital and diagnosed. She knows what it can feel like to have hypo, and what the balance is between a hypo treatment that works fast, and a hypo treatment that doesn’t taste absolutely foul. At the moment I’m on a mix of Cadbury ‘fudge’ bars, and full sugar coke. It’s pretty disgusting, but has to be done about once or twice a week. She can also look at a plate if I’m struggling, like when we’ve gone out sometimes, and mouth across the table ‘approximately 50g,’ to help me calculate my dose.

But it can also be really hard. We are completely different people, and we lead different lives. We’ve been diagnosed in completely different ways: hers was what you might call a pretty regular diagnosis. She experienced all the regular symptoms and they caught it earlier on. I went from seemingly healthy and active, to bed-bound in ITU in the space of 24 hours. She can bend the rules, and feel when things go wrong. I still rely fully on my meter to know where I am. She has different insulins to me.  She has been dealing with it for 35+ years. I have had it for just over 70 days, and she can’t impose her Diabetes control, both practical and mental, on me. We work in different ways. She is a lot more matter of fact. I get a lot more emotional.

And knowing what is like probably makes it a lot harder on everyone in the house, because there’s now twice the worry, twice the fear. She knows what it’s like, so she can be more anxious about the things I do and can get up to. She has her own experiences which affect how my diagnosis is processed. As one of the first endocrinologists I saw explained, it’s like how often when you learn to drive, you use a driving instructor, and not your parents. The same is true with your DSN and your parents.

So as such, we made the decision early on that my Dad would be my chauffeur and waiting room accompanist at all my Doctor’s appointments. I’m actually old enough to do it all by myself. But I need someone to at least drive with me at the moment, and it’s him. In fact, it’s easier because Mum’s at work during the week anyway. But we tend to keep our Diabetes separate. Because it has the potential to actually be worse, rather than mutually beneficial.


14. *Orders ice cream* “Haha – Diabetes here we come!”

This is quickly becoming one of my pet peeves. So just a quick note. Please don’t joke about getting Diabetes. As I have explained, Type 1 has no known single ‘point-your-finger-at-it’ cause. There are a huge range of causes of Type 2. I don’t take offence too easily, but this is hard to hear on a daily basis. If you don’t know, just don’t even go there.

You won’t get Diabetes from eating ice cream, or chocolate, or sweets. And it’s not funny to joke about, so enjoy everything in moderation. I do too, and I’m diabetic.


15. “Seems like there’s nothing good about it.”

So here’s where I make the counter argument. Maybe a lot of this has been a rant. But I hope it’s also been educational, and made you a bit more aware of how much more to this there is than Maltesers.

I don’t want to end on a negative. So here I share the positive. I am gradually beginning to realise that Diabetes may be a sort of blessing in disguise. Let me explain. I don’t want anyone ever to have to have Diabetes. But if you have it, you can’t escape it, and it really is a life or death thing, so whilst it’s super hard, and there are rough days, and it takes so much time, you do begin to come terms with it, and even begin to find little glimpses of silver lining. I’m just at the beginning of that journey.

Diabetes sucks. But there’s a whole community out there. One of the first things my housemistress did when I was diagnosed was send an email round to all staff on site. Having been a boarder, is was important that everyone knew, so if I was found at any time of night or day, someone could help out. So many members of staff have come up to me and offered their support, understanding and stories about people they know with Diabetes who have gone on to do amazing things. “It might not feel like it now,” they say, “but you will go on to achieve just as much, or more, than you would have.” And week in, week out, I am overwhelmed by so many members of other communities I am part of  who come to, or reach out to me, and just say “hello” or “are you ok?” Sometimes I lie and say “I’m fine” when I don’t feel at all. Sometimes I absolutely mean it. But either way, I know they care, and that means so much.

And one of the best things I did for myself, was reach out to the community. There is an absolutely fantastic charity which is America-based, called “Beyond Type 1”. It is a community of people of all ages and genders across the world, who have type 1 diabetes. You send them your name, age, diagnosis date, and address, and preferences, and they match you with a similar Diabuddy, or someone else who has Diabetes, and for free, send you a starter pack of postcards, notelets and stickers to start a pen-friend relationship, called Snail Mail. That’s how I met JM. A training nurse who lives in Maryland, USA. Diagnosed at pretty much exactly my age, 2 years ago. It’s so good to have someone who understands, and whilst our medical systems are completely different, I don’t feel so alone. Thanks JM for everything, and for everything you will continue to be for me; I have a feeling our letter writing will last a long time. You make me feel a bit more normal.

It’s also been the most amazing concentrated time of prayer and support from my closest friends and extended family. I have felt alone, but never alone at the same time. I have received so many messages, so many letters and cards, the most beautiful flowers, pens to write my heart out with, books to write in, books to read whilst I’m stuck waiting for appointments, or hooked up to IVs, pictures of baby elephants from Sri Lanka to make me smile, and countless hugs, chats, phone calls, texts and many instances of “I don’t know what to say, except that I’m here for you, and I’m thinking of you.”Countless “my thoughts and prayers are with you and your family at this time.” Immeasurable love.

And I have also felt like I’ve understood another part of the world. Much of this I can’t understand. I want to know why: why me, why now, why this, why not that. I can’t. But what I can now understand is a bit of everyone’s life who experiences pain. A bit of those lives where you wake up in the morning and think “I can’t do this today.” A bit of those lives where you wake up in the morning and think “Yes! I’m going to smash it today.” A bit of the lives of the chronically ill. A bit of lives of the dying. A bit of the lives of those who love unconditionally and freely. A bit of lives of those who are scared. A bit more of the lives of all of us. And I have felt moments of absolute extraordinariness in the ordinary.

So I guess, this isn’t all bad. And it will get better. Everything, as M would say, is going to be fine.


If you’ve got this far, you 100% deserve at least 5 Maltesers. Thank you for all your continued support. You can watch this slideshow for a more pictorial idea of life!

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Behind each face, a soldier

I received so many positive comments about my last poem, that last week I decided to pursue the imagery of soldiery, especially with the background of chronic illness, and in Mental Health Awareness Week. Having an invisible illness has shown or confirmed to me so much over the last few weeks, notably that you might not know what battles someone is facing from the outside, but that doesn’t mean they aren’t fighting. It doesn’t mean they aren’t fighting with everything they’ve got left in them. It doesn’t mean some days they don’t wake up and think: I can’t do this today. There are victories, there are losses. There are good days and there are bad. Sometimes it feels like a battle, sometimes a war. But you are not alone.

But I don’t think these words need much explaining. Just let a music speak to you, lie still and the seconds wash over you. Sometimes more words are surplus. It might mean something unique to you – receive it, don’t push it. Just be, and rejoice at where you are, be proud of whatever you are fighting, take strength from what you’ve overcome.

 

For all who fight. For all who stand but want to fall. For all who need a comrade tonight. For all whose mental strain is too much. For all who cannot see the light. For all.

 

When each week is a war, each day is a battle.

Can you hear the drums, and the clashing of metal?

The day is beginning, and the standard flies high,

While the soldier, wounded, utters a deepening sigh.

O how he would give to stay, sleeping, in bed! So

Why does he fight with darker darkness ahead?

Because he is a warrior, called to the fight, and

Even in sheer darkness, he holds victory in sight.

 

To be that soldier, in greatest fear to stand,

It’s a choice we make when we hold life in our hands.

Do we fight for a chance that we might live and survive?

Or do we surrender to darkness, and thus, suffering, die?

Humanity’s truth is that we shall all fall. But

When, where, and why, are never the same for all.

When the pool of bitter blackness tugs at our feet,

It is life, and its fullness, we must turn and greet.

 

When plunged into warfare, trembling, and afraid,

Little to guide you, and no one to call “friend”

O you’ll fight and you’ll fight and you’ll fight to the end.

Within, there shall be light, and it your fear amend.

Where there are mountains, towering high, o’er the valley

And up into the sky – there light shall also, beside you, fly.

With light you’ll find mountains can melt into plains,

A power almighty which loosens shackle and chain.

 

In this day I call battle, in this week I call war,

The soldier will fight, and not win, but o’er death soar.

And tomorrow, when the dawn winds her way back again,

The standard shall fly, and the trumpets refrain. But

The soldier shall stand, wounds his deeper strength,

And say – “Life I choose you. I hold death at arm’s length.”

He shall fight to the end, with light by his side,

When dark comes around, to light he’ll confide.

 

And he is fighting his battle, but is not alone,

Comrades beside him echo the harrowing groan,

Of conflict on the inside, but radiance without, the

While knowing the enemy they can never truly rout.

They’ll be strong for each other, they’ll share the pain,

Rank upon rank, fighting snow, wind and rain.

For though the outcome of war might be changed by will of one,

When war builds on war, it is only together outrun.

 

When each week is a war, each day is a battle.

Do you now hear the drums, and the clashing of metal?

A new day is beginning, and the standards rise high,

While the soldiers, still wounded, utter sorrowful sighs.

O how they would give to stay, sleeping, in bed! But

Today they’ve chosen to fight with the darkness ahead.

For they are the warriors, called to the fight:

In prolonged darkness, they hold victory in sight.

 

 

Just keep going.

If you asked me 10 years ago what would make my perfect evening, I would have said that a perfect evening consisted of at least 2 hours of swimming training, followed by a packet of crisps in the car, waiting for J, secretly listening to the final strains of evensong echo in the car park. Then going home to bed.

Swimming was my physical outlet. It was cathartic. I remember thinking that it was perfect, because no-one could tell if I was crying. The tears pricking my eyes merged with the stinging water of the pool. Some more strokes forward, and tears were just another drop in an infinite number, through which I swam furiously. You had to be strong to swim. Just keep swimming, and everything would be ok.

But it wasn’t. Soon after that, my health meant I had to stop. My way of dealing with the stresses and pains inside my mind was ripped out of my hands. I felt impotent, and my relationship with any kind of physical activity deteriorated. When I started year 7, I decided fervently that I hated all kinds of sport, because they were a reminder of what I could not do. I was awful at lacrosse, gave up trying in netball, and took to deliberately hitting the tennis balls over the fence into the town park, so that I would spend my sport session walking out of the school grounds and through the gates into the park, to pick up all my wayward balls. The worst of all was cross country, when we were made to run round the same park in a t-shirt and shorts in the middle of January. All the best girls were at the front. They ran with ease all the way round. And I walked, bringing up the rear.

It only made problems worse. If you weren’t sporty, you weren’t cool. If you weren’t cool, who were you? Why would they talk to you, unless it was to jeer at your inability? I wanted to scream to them to say that I could do it. I wanted to do it. But after 2 years of not trying, I became so unfit that by the time I tried, it was painful. And then I gave up completely. I developed an infallible strategy of persuading my male sports teachers that I had severe period pain, every time we had sport. I just didn’t think I could do it.

As a result, I became very self conscious about my body image. It was the worst in gym class, dressed in leotards, and being instructed how to do flips and tumbles. Everyone else was tiny, and I had this podge of fat. We were told in biology aged 11 that we would all put on weight in our early teenage years, affectionately termed ‘puppy fat.’ But in an all girls’ school, the notion of the ‘thigh gap’ became much more important, and seemingly everyone around me, aged just 12 and 13 was stick thin, and was taking measures to ensure they stayed so. I was sure that I was not thin enough because I didn’t do sport, when in reality, I was of a perfectly normal 11 year old weight. I was sure that all my problems, bullying and anxiety, could be put down to my weight. And I bottled everything up in my mind, with all the anger and hatred whirling around and around. I had no outlet for it. It was like a Molotov Cocktail just waiting to explode. I had given up swimming through it all. I wasn’t strong enough to swim anymore.

When I moved school at 13, my self-consciousness was debilitating, and the first thought in my mind whenever I met someone new was: do they think I’m fat? But soon afterwards, I made the conscious agreement between my body and my mind that I was not going to let this define the rest of my school career. I couldn’t face being with the girls, on the hockey pitch. It brought back all the fear. So I joined the boys’ recreational football team, and sustained my first sports injury, a broken wrist. Because if you were the only girl on the boys’ team, you were obviously the only choice for goalkeeper. But I didn’t mind so much, because I enjoyed it. I could run around on the pitch, and the boys didn’t make snide comments like girls do. In the summer, I played cricket.

Gradually, over the 5 years I have been at my ‘new school’ (it’s not so new anymore!), I have got back into girls’ sport, and played some netball and rounders. But I have always struggled with fitness, and feeling comfortable enough to wear a t-shirt and skort. Last year, when I finally got an all-clear to swim again, I was so uncomfortable wearing a swimming costume that I wrapped myself up in a towel all the way from the changing rooms to the diving blocks. And then the bleeding started again, and once again, just keep swimming was no longer an option.

But I realised that I had to find another way out. I couldn’t spiral downwards again. I didn’t want to leave school with a self-consciousness about my body image, and I needed a physical outlet for mental pain. So I started running.

Over Christmas, J received a fitness challenge as part of RAF training. 30 days. And he forced me to go with him. It was my worst nightmare at first. Dressed in clinging leggings, I was sure that everyone could see my weight, and running in public, through town, I was convinced they were laughing at my red face. When I got back home, I shut myself in my room, and collapsed on the bed. But although I was drained, it felt so good, and I felt more confident about myself. I had believed that I could, and I done it. For the first time in 10 years, I had voluntarily gone out on a 20 minute run. It felt amazing. I felt so happy.

Everyday, my brother and I have done at least half an hour of exercise, and the minutes have slowly increased to the point where we are now running for an hour, once a week. Last Friday, we were running at night for the first time. J is strict with the days of the challenge, and so whereas I suggested we might swap ‘100 squats, 80 sit-ups, 30 press ups’ we were due to do on the Saturday, with Friday’s run, he insisted we went, equipped with head-torches and reflective jackets. I’m so glad we did.

There was something very powerful about running together in the dark. It was a clear night, and the stars were super bright, the brightest I’ve seen them for a long time. On the left of the road, there was a purplish streak, and it faded to black on the right. The moon gave everything a hazy glow, and made the raindrops on the trees shine ephemerally as we sped past. The sound of our feet, landing in time together on the pavement, was like the beat of a drum spurring us onward. It was biting cold, but I felt so warm, and not just because I could feel my legs burning. I could process my emotions in a physical escapism that I have not felt for 10 years. Even when the stitches kicked in, we carried on, and felt the pain melt away. And by the end of the run, I felt as if we could conquer the world. There was no self-consciousness, but a self-awareness and sense of self-acceptance.

So, though, 10 years ago, I would have told you that swimming was my sport, and running was the worst thing in the world, I would now tell you the opposite. I have become a runner. This week, burdened by so many stresses, coping with mocks, and competitions and music auditions, and university decisions, and friendship dramas, I have found so much comfort in thinking and praying whilst running. They seem to go together.

Over the course of these 30 days, I may have lose weight, I don’t know, I don’t check anymore. But what’s more important is that I have become able to tune into myself, and listen, and see. I’m so much happier. I’m so much closer with my brother. We’re a running team. And I’m sure that as we move into month 2, I will become in tune to so much more.

Each day, I take step one. It’s just me and my thoughts, following the beat of the drum, feeling a glorious pervading love for the divine world around me, and sense of appreciation for myself and who I am. It lasts until the final step.

Even if you think you can’t go on, if you are drowning in self-consciousness, self-deprecation, and a distance from your self, you can, or you will. Just keep swimming. Just keep running. Just keep going. Believe.


Every time I reflect on this, I feel so so sad that the state of our society is such that there are 12 and 13 year old girls, and boys, who are forced to be so preoccupied about their weight. It makes me so angry that often bullying stems from issues of size, and that so many children and teenagers are suffering from self-consciousness, and a lack of self-confidence. And the problems that arise from such a culture are not just short-term, but can cause mental health struggles into adulthood. If you know someone who is struggling, with weight, with bullying, with low self-esteem, or is just having a bad day, please be there for them, and point them in the direction of help.

Someone who smiles, who gives a hug, shares a story, runs or walks with you, holds your hand, or just sits and prays with you, is someone who will change your life, and change the world, one small action at a time. I have learnt that you are so much stronger than you originally conceive, and if you believe, anything is possible. It’s often the believing part that is the hardest. In sharing our belief, we help others to see a light, when so much the world around them is dark.

Perhaps in doing so, we can be that bright star in the night sky, that voice of God’s glory here on earth. We can show another runner that they can.


I don’t think it is a coincidence that as I wrote that final line, this song came on my iPod. If nothing above resonates with you, just give this a listen.

To me, to you

I was privileged to have a visit a couple of weeks ago from Hannah from ‘Hello me, it’s you‘, a charity that aims to help give teenagers a voice, normalise mental health issues, and offer hope. It was a moving visit. They have collated letters from a wide variety of contributors, all of whom have experienced mental health struggles in some way or another, which give advice to their younger selves. It got me thinking about what I would say to my younger self. I am 17; this is a letter to my 13 year old self. Thank you Hannah, for giving me the impetus to write this. 

Hello me, it’s you.

You’re sitting in the toilet cubicle, in the bathroom. You’re getting changed for sport there, because you don’t want to change in the locker room, with all the other girls. They are so much thinner than you. They are so much prettier than you. They are so much better than you.  You’re sitting on the toilet, with the scissors in your hands. You are staring at them, like they are going to bring you some kind of relief. But they won’t. The tears of blood won’t weep away your pain. Put the scissors down. After a while, you will.

You might have saved yourself the physical scar. But every time you stopped yourself, you carved a deeper scar in your mind. Putting down the blade doesn’t make you feel ok just like that. You still don’t feel good enough. You are still wracked with guilt that you weren’t good enough, you aren’t good enough. You thought you had ticked every box you defined yourself by, unmatchable grades, honesty, modesty, the rest. But you told them your secret, and they punished you. You were being honest. But this was how they repaid you; not even your grades could save you. There was no seat for you anymore. They filled it with another, thinner, sportier, perfect girl. And you are the leftovers. You’re not enough.

You go back into the changing room. It’s claustrophobic, it smells, there are clothes everywhere, girls shouting, taunting, screaming, throwing paper planes, beating their lacrosse sticks against the wall. Someone has rubbed your books with rotten banana, the black skin is sitting in your locker. Your perfect books, which never had a cross in them. You feel dizzy, you feel your heart beating faster, faster, you are shaking, there are those pains in your stomach and you think you are going to fall and you know you have to leave but you can’t because that would be showing you are weak. So you are sitting,  waiting for them all to leave so you, and Mr A can be alone, and sort some things out. You want to pick up the scissors, but you don’t want to go back there again.

You see, Mr A has been in your life for a long time now. Those symptoms are Mr A’s way of telling you that he’s coming round to stay. Right now, you think you are alone with Mr A. You don’t even know he has that name. He’s just this thing that’s inside your head, and you know he’s there but you can’t really describe him to anyone. He’s like an indescribable criminal that is blackmailing you, robbing you of your smile, your sparkle, your life. But you can’t tell anyone. Because that would just make him stay. You think if you forget about him, he might go away. After three years of trying, you’ll realise that Mr A is like any guest. He’ll come and go as he pleases, and you can’t really control it. But when he comes, there are rules. And by the time you are ready to leave home (and not running away, properly leaving home), you and Mr A will, mostly, respect each other, and each other’s rules.

But for now, you and he are in a war, raging in your mind. And you think he’s about to explode, and you can’t tell anyone. It’s easy for me now to say that you were wrong. That you could tell. But I remember how you were feeling, shaking in front of that rotten banana.  You couldn’t tell someone. You were the odd one out, not them. They’d never believe you anyway. But the people who mattered already knew you weren’t right. They didn’t know what, where, when, why or how. They didn’t know about Mr A or about the bullying or about the murderous perfectionism or about the scissors. But they knew something wasn’t right. Because you used to smile with your eyes. And right now, your eyes are black voids of pain. While you are sitting there, with your eyes closed, waiting for the shouting to go away, and fighting with Mr A to shut up, they are already planning to come and save you.

One week later, you won’t have to go to school anymore. Not for another five months. And even then you wouldn’t be going back there. But you will have to go back for your final speech day. Prizegiving. Where that perfect girl will take your seat, and your parents’ seat. And you will be crammed into the back of the regimental Chapel, Mr A’s hands on your neck, suffocating you, whilst she took your seat. You will think that you will never be good enough again, no matter where you were going.

You will move school, and you will think that everything is better. For a year, you will be perfect again, the same star in a new sky. Shining brighter than everyone else, and filling every space with your light. And it is partly true, you will regain some of your light. But not all of it. And it won’t stay that way. Because you will think running away to a new school means running away from your self consciousness, and from your imperfections, and from Mr A. You will forget about him. You think he will forget about you too. But he won’t. He will come back, with the others, and his friend, Mr D, so much stronger than before. And, aged 15, you will be struck by a wave that winds you, and you will be a whale beached on the shore, unable to swim. You won’t even want to get up in the mornings. You will experience bullying for an innumerable time. You will be irritable. Then silent. Then burst into stupid tears at the smallest things. You will lose all your friends, and no will understand. The closest person to you will tell you simply that clever people are always lonely, and you’d just have to get used to it. You’ll try to keep it to yourself, the emotions clashing, and bubbling, and exploding.

But there’ll be one difference that time. You will sit at the table and you will cry and cry. You will realise you are not, and would not be perfect. You will realise that you are incredibly lonely, and you just want someone to give you a hug and tell you that it will all turn alright in the end. And you will realise that Mr A had become inseparable from Mr D, and together they are binding you. And you won’t be able breathe and you will feel dizzy, and you will almost collapse in pain. And you will touch the scissors. But she will come in, and see you, and you will say: I’m not ok. And that will be you at your most vulnerable, and at your strongest. You will say, I’m not ok. And, in effect, you will say that you need help.

And she will give you a space to talk, where you won’t feel judged. She will give you a counsellor, a support team, daily meetings. She will give Mr A his name, because you didn’t want to be shut in a box labelled ‘Anxiety’ for the rest of your life. She will help you to control Mr D, Mr A’s Black Dog. Because having a relationship with Mr A will be so much easier. Everyday you will just have to rank yourself and Mr A, 1 through to 10. Gradually, you will move from 1 to 8. Gradually you will build rules for Mr A. Even by age 17 you’ll never push yourself above an 8. But you’ll still working on it. Gradually you began to see a true light, and find a true sparkle.

And while all this bullying, anxiety, loneliness and pain is breaking you, you will be saved. Saved by your school, for sure. But saved by something all together more wonderful, indescribable and heart-wrenchingly beautiful. You have just been confirmed. You believe, sure you do. But I think you’ll really only need to test your belief, and learn to BELIEVE in the next few years. Because you won’t be on this journey alone. You’ll soon come to realise that the place you feel most at home, the Church, will become more to you than just a place. It will become that place where Mr A has been, and Mr A is, and Mr A will be, but it will also be the place where God is, and will be forever. There will be times where Mr A takes over; you’ll wobble emotionally, and religiously. But you will always find God again, and you will be able to do anything with Him.

Your relationship with Him will grow and grow and grow, to the point that there won’t be a day that goes past without you seeing a glimpse of his presence in the world. In the sunlight, bursting through the trees. In a chick as it finds itself in the wrong egg. In the soft breeze as it whispers through the trees. In snatches of music. In the comforting embrace of a warm bed. In the frost as it smokes. In a laugh. In a smile. In a tear. You will learn what it is to experience transformative prayer.

And you will be called into His service. You will live out God’s love in your own life, wherever he calls you. You will hold a hand. You will lend a smile. You will laugh and cry with people. You will serve. You will testify. You will speak. You will share. But you will be there. Because you will come to understand that the loneliness you are feeling right now is nothing unusual. And though you might still struggle, you will understand that the love you experience can make others’ lives better. You can give them the love you are searching for right now. With God by your side, you will inspire, you will love, and you will be.

I don’t know why, but you’ve never been good at talking to your parents about how you’re feeling. Yes, I’m talking to you, who still hasn’t told her parents that she’s spending her lunchtimes in the library to avoid people. You who haven’t told them that you need them. Because you don’t know how. You still find it hard at 17. I mean for goodness’ sake, you will take to writing them letters, because it’s easier than talking.

But at the Cathedral, you’ll find a family you can talk to. An angelic host. Clergy, Virgers, Stewards, Choir Parents, Choristers, Lay Clerks, Organ Scholars, Congregants. Friends. People who love you, and care about you and your family. Sure, you’ll have your run-ins there. But you will also find your voice again. You will share in their joys and sorrows. And they will want to share in yours. You will be ok with going to have coffee and talking about scary things, without feeling scared. You will be supported and uplifted. They will bump into you in random and unexpected places – on the street, at the station, at a concert, at school. They will talk with you, pray with you, light candles for you. And they will enable you to shine like the star that you are hiding away behind the facade of books.

It will all start with you saying: I’m not ok. And sometimes I wish that you would have said it earlier, because you knew it all along. But you said it at the right time for you. And so I guess that’s ok too. And every day that you continue to say: I’m not ok, I am proud of you. And every day that you say: today I feel good, I am proud of you. And you and I both know that there will be days when together, we will sit in front of that locker and fight with Mr A. But there’ll be other days when he will be visiting other people, and you can breathe.

You will still have Mr A days. Though you sometimes still get breathless and dizzy, you will sometimes just be angry, or extremely tired, or unproportionately emotional. You will feel sick, and you will get that sharp knot in your stomach. Those days will be tough. There will be weeks that test you to the maximum. You will feel incredibly lonely. But you will know that you’re not alone. You will never be alone. You have faith, friends, and family. And each day that passes, you will show your strength. One day, you and Mr A may even have a day where you will stand, hand in hand, and smile. You’ll say: we’ve got this. You and I, we’re OK today.

I know that you probably didn’t read that all. It all seems a long way off, and you don’t believe me that things will get better. So if you didn’t read anything else, remember my these pieces of advice for you, to get you through the next few years. And remember, I’m still learning too. You and I, we’ll be learning for a lifetime. And I bet we’ll never find one right answer.

  1. Don’t be afraid to talk. Talk to your friends, talk to your family, a teacher, a co-worker. Say: I’m not ok. And go from there.
  2. Stick to your own values: honesty, compassion, kindness, selflessness, modesty, fortitude, reverence, patience and trust. Learn to be ok with you Catherine-ness, and celebrate it.
  3. Take it one step at a time. Don’t try to run before you can walk. Don’t run away from the problems. Acknowledge they are there, and take each day as it comes. Try and make one small change a day and in a week, a month, a year, two, you’ll see how far you’ve come.
  4. Cherish the memories you make with family in the moments they happen. We all know families aren’t perfect, but you have a good one. When you feel able, tell them how you feel, write if you need to. Look out for them too.
  5. Don’t be afraid to try new experiences. You know that there will be occasions/weeks that trigger Mr A but don’t let that make you say no. You can try, who knows, you might even have some fun! By doing this, you will have some life changing experiences.
  6. Don’t be afraid to voice your opinion, and speak up for what you think is right. Sometimes people need to hear a new voice.
  7. Embrace your inner nerd, it will make things easier in the long run. And there are lots of normal people who like Classics too.
  8. Pray. A lot. For your friends, for your family, for the world, for you. They all need your ongoing prayers.
  9. Say thank you. Give praise for everything you have got, and how far you’ve come. You’re awesome, and the world around you is too.
  10. Serve others. It’s where you find your greatest joy. Listen to others. Be there. Give more than you receive. Love.

I love you. You are enough. You matter. And I think, though you might not recognise me right now, you’re going to learn to love me too. And if you can’t quite manage that right now, put your fingers around the cross you bear. And know that He loves you.

See you on the other side of 17.

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