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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Extraordinary in Ordinary

Three things before we start –

Apologies for the stupidly excessive amount of times the words ‘ordinary’ and ‘extraordinary’ are used. I hope you don’t get lost. I admit, I lost myself a few times. So please “bear with,” as my brother would say.

And huge credit to Canon J for reminding me of the jigsaw analogy – it is one I seem to be using a lot at the moment to explain life. I will never forget the bobbing conversation we first had after sabbatical when you explained it. It really helps, and not just me.

Finally – thank you to all those special people who make my ordinary extraordinary, and who share with me in extraordinarinesses day by day. You know who you are. 


We’re back in ordinary time. Though I missed it in somewhat spectacular fashion (I don’t do things by halves!), Easter is over. Pentecost has been and gone. So it’s ordinary time again. It has the capacity to sound rather bleak. Ordinary, in fact, or how the word ‘ordinary’ has come to be used. And whilst it is principally a measured and numbered time, it definitely has the capacity to drag on. When you get to the 21st Sunday after Trinity, there is no doubt you feel older. Or I do anyway. But ordinary time charts an extraordinary life. So ordinary time has the capacity to be a time for learning, growing, appreciating. And for every individual, the ordinary might just have the power to become extraordinary.

As much as the last few months have shown me that every day we are gifted is extraordinary, it’s difficult to remember. Now as I settle back into life, back into school, into exams, and slowly back into myself, I find that I am slipping into a new ordinary. I have new routine into which each day fits and becomes ordinary. It’s different than it was before Easter, it has to be. But it’s still kind of ordinary. And it certainly feels like it will become more natural as each day passes. I find it harder each day to find extraordinariness.

So I woke up yesterday to what I thought would be an ordinary Saturday. I hit the alarm at the luxurious time of nine o’clock – it is, after all, finally, half term. And I rolled out of bed and into the shower, not quite literally, but close. I checked my bloods, gave my first dosings of medications, and about an hour after waking, finally got around to eating breakfast (don’t tell my DSN!). It was Shreddies, if you’re interested. I told you this was going to be a pretty ordinary day.

I settled down to work and my desk soon turned from a blank canvass of a space into brain flow carnage. Paper covered every inch of wood, and, of course, decided to take flight onto the floor, into the garden and under the sofa, as soon as I opened the door to get some fresh air. Highlighters merged colours with bleeding ink. Arrows, asterisks and splashes of colour showed my exploding thoughts, linkages and patchy knowledge. I stepped back when I finished for the afternoon and was quite astounded by the chaos I was able to create. I am ever close to trusting in my family’s belief that ‘every space I inhabit is messy.’ Being legal types, they made me sign a document in 2015 that affirmed it. But I guess they can’t complain. Under the proviso that everything I am currently doing is ‘revision,’ most things seem to pass familial scrutiny, including eating a square of dark chocolate every once in a while: cocoa was a key export in the triangular trade originating during 17th century Stuart Britain, so it definitely counts as sensory immersion in the Stuart economics course. That’s my argument at least. Don’t you agree?

An ordinary day. I got in the car to go up to the Cathedral (it’s technically down geographically, but never mind), and it was a pretty ordinary drive, dodging weekend drivers and enduring my father’s regular exclamation: “what did he do that for?? Look where it got him… nowhere!” Suffice to say he’s not very good at channelling road rage. To be honest, hitching a lift was really just an excuse not to get the train, since my Dad had to be there anyway. So I suppose enduring road rage is sort of part of the package. And who knows – maybe I’m as bad when I drive…

I don’t know why, but I didn’t talk at all whilst we drove. I guess I just wasn’t really in the mood. Going back to places where I felt more than comfortable ‘before’ is even harder with an ‘after’ identity that’s still piecing itself back together. I hate that divide, but it’s sort of the only way I can think of to describe this. Whatever this is. It’s like before there was a jigsaw puzzle that before was almost complete, and so you could see life’s picture coming together. But now the jigsaw puzzle has been mauled, or trampled on, or broken up by someone frustrated that all the pieces of sky were the same colour. The edges are still roughly there, or at least they are the easiest bits to put back together. The boundaries of life are roughly in place. It’s the rest of the picture that’s missing or jumbled up. All the pieces are lying topsy-turvy on the floor. The picture isn’t clear anymore. You hope all the pieces are still there. But you don’t know – there could be one that’s missing. You don’t know when or if the picture will be complete again. It’s the feeling that the world has shifted under you, and you’re not quite sure where to stand, or if you are about to embarrass yourself in a spectacularly un-elegant mudslide. They are the same places, but you’re not quite the same person. I’m still trying to find where the ‘after’ person slots back in. I’m still piecing back the jigsaw puzzle.

I needed space.

So as soon as we parked up I headed to the gardens, sheltered by the body of the Cathedral itself, and shadowed with the wooden cross, the golden angel flying high above. They are the same gardens I used to play in in the transience of past summers, hoping desperately that the choristers would take 5 extra minutes, so I could have 5 extra minutes chasing the other siblings round and round, with the final strains of evensong just ever so slightly lingering as the sun slowly waned and the night crept in. The tufts of grass find a beautiful luminescence at this time of year, trapped daily between bouts of sweltering sunshine and scattered showers. It was the same grass where I would sneak a sandwich, or picnic with the other families enduring a three-service extravaganza of a Sunday. It doesn’t happen anymore, but the same gleaming grass is still there. And it harbours the same attraction to the child inside of me.

And, with an hour to spare before evensong, I took my books. Rather ordinary. It’s exam season, so I’m rarely anywhere without a book and a pad of paper to jot down any unusually inspired ideas, plans or thoughts. In fact, think my consultant was a little surprised when I came for my bi-weekly assessment this week accompanied by a hefty volume of Tacitus. But you never know about hospital waiting times, and I’ve found that a historian who is characterised by his ability to politically psychoanalyse is a great match for the joys of sitting on an inconveniently placed plastic fold-down chair that is unimaginably uncomfortable (who designed those things?), waiting for a delayed appointment to be drained of yet more blood or infused with some new IV goodness, watching doctors, nurses, paramedics, patients, assistants, relatives, children, the elderly, wheelchairs, beds and trolleys trundling past down clinically sanitary white corridors, long, maze-like and dingy. And when other spare time allows, the ducks and the adorable golden and fluffy goslings in the local lake are becoming ever well-versed in Ovid, Propertius and Tibullus. It is somewhat less awkward learning the erotic Amores in the shaded woodland than in a public space. The ducks don’t seem to mind anyway.

But whenever I go to the Cathedral, it’s normally Greek. Rarely anything else strikes me as having the right gravitas. And if I want to work on my translation, the Greek Bible feels very at home there, as I hide, tucked out of sight in the library, beavering away to the sound of organ practice, or tourists wandering and wondering what lies beyond the solid door. But I wasn’t in the library yesterday. It was too claustrophobic, too dark and too serious. Besides, Thucydides was charting the battle of Pylos, with its precipitous headland and rocky terrain. It was much more fitting to be out in the gardens, atop the hill with its views down onto the town below.

And I needed space.

And I hadn’t been feeling anything particular all day. And it would have been a completely ordinary hour to anyone else. But suddenly, sat there, on a bench in the garden, a bush shading me from the sun beating down, but still feeling the all-encompassing heat in all its glory, and with the blue sky traced not a single whisper of cloud holding my gaze, dreaming to the strikingly familiar soundtrack of children racing down the hill below, and the students sunbathing, and the birds singing joyful hymns in the budding branches, a wave of extraordinariness struck me. I can’t really describe it in a way that it merits. Except that this was a moment I wanted to capture forever. Just a single moment with all the sounds and heat and scents of summer. A perfect and extraordinary moment in an ordinary minute.

I felt so grateful to be in that moment. Grateful to be alive. Grateful for summer. Grateful for faith. Grateful for the chance to have a moment of silent solitary stillness. Grateful for hope. Grateful for youth. Grateful for strength. Grateful for survival. Grateful for the world’s beating heart.

Those moments are truly extraordinary. When you feel like all the darkness and the light and the pain and the hope just align for a single second. When you feel like the world is yours to share in. When you feel like there is a split second of ultimate peace. When you feel like all you can do is love.

Slowly, the moment melted. It dissipated before my eyes, as another dog walker turned my gaze, a child’s shriek struck me unaware, and the pages of Thucydides started to flap incessantly as the breeze picked up. And I too seemed to melt back into the ordinary routines of working. But that feeling of extraordinary power didn’t seem to leave me. And it’s still there, locked away in my heart or mind.

I can tell I was still in a haze even 10 minutes later, despite returning from dreaming to studying, since a gentle and quiet “hello” half-startled me and I jumped, much to both of our amusements. But I think the unconscious haze that followed, as I held that moment close, is indicative its beauty. It was a moment that shrouded me so completely; I was so perfectly in tune with my own thoughts to the extent that, for that one moment, I could transcend the earth’s pain.

It is the extraordinary moments like that one that you come back to when the world throws you, knocks you back and winds you. Moments which change you. Second by second.

But change takes many forms. Sometimes it comes all at once. In fact, I left school on Friday, a time tinged with so many bittersweet emotions. I’m ready to leave. So ready. But there is a part that tugs me back. It’s certainly a big change, and therefore overwhelming. Yet it seems pertinent, since, as I write this, it is my headmistress’ departing words to us that echo in my mind, that we shouldn’t feel the pressure to have to be glorious, and live an extraordinary life. “There is nothing wrong with living an ordinary life well.”

For me, it’s definitely not about living an extraordinary life. I’m about the most ordinary you get, with rather ordinary hopes and fears. But living an ordinary life well, that’s more like it. And I think it’s not always the big changes that make the difference. It’s the ability to discern the changing extraordinary second hidden in the ordinary minute, and cherish those extraordinary moments, that make a day lived well and that make an ordinary life extraordinary. In that sense, there is no better thing than living an ordinary life well.

And sometimes there are those rare hours and days when there are so many extraordinary moments that you just want to capture them all and hold onto them in your heart forever. So, what had been an ordinary studying Saturday became an extraordinary one. For that moment was just the first.

The second was like, namely this. The same bench, the same shade. The same sun, the same breeze. The same golden angel and same shadowing cross. The same blue sky, the same striking green. But two people. Two people who chose to cast books and stress aside for a few hours of just being, and enjoying living (and pizza 😊). The picture was quite ordinary: two people sitting on a bench in the sun, quite alone in that part of the garden, but not really alone at all, talking about the weather, the week and the future, laughing, and commiserating. Yet however ordinary, there was a similar wave of extraordinariness to the feeling I had experienced alone. Although, this time, the moment seemed to harbour a greater profoundness. Because it was not divine for me alone. It was the extraordinary shared.

I lay in bed later. In fact, you won’t be surprised to hear I lie in bed most nights. It is distinctly ordinary. But somehow this, again, was extraordinary. It was characterised by thoughts different to my usual angst-filled reflections on A levels, or mental essay planning. None of my usual cares seemed to cross my mind. The window, cracked half open, let in just a subtle coolness to the overwhelming heat of the room. The curtains waved, and beat ever so softly against the pane. The birds were still singing though night was swiftly dragging at the sky. But their tune was no match for the music the day had brought. I closed my eyes from the ticking of the clock and just listened to my breath fade into nothingness, arms wrapped round me in a sure embrace. I wished I never had to leave that moment.

Ordinary time is measured. It drags on. Watching the clock is a reminder of how, in the grand scheme of things, there is so little time we have left to spend together. I have lived for 9,672,480 minutes up to this point. That’s 580,348,800 seconds. I’ve roughly spent 2400 of those writing this. And probably more by the time you read this. So how many of them have actually counted? I don’t know. Ordinary time drags on.

But sometimes, in ordinary seconds, extraordinary time is found. It doesn’t feel measured. It is both ephemeral and lasting beyond the confines of time. It changes you. It counts. It is what we hold to. It is how we move through the pain. Everyday, we must try to search out extraordinary time in an ordinary second. To hold onto it. To cradle it. To come back to it when there is no one to turn to.

Though I share something of this with you, deep down, in my heart, I know no words, no language, or music will ever be able to describe the true sense of extraordinariness. Maybe it is foolish to even try to write it down. I can only ever go part of the way to acknowledging the love of it. The rest you’ll have to feel for yourselves.

This ordinary time, find the extraordinary moments. Share the extraordinary. Make the decision to live, and love living. Hold onto the extraordinary in the face of the ordinary. Look to the extraordinary when the ordinary overwhelms. Who knows, this ordinary time, you might just see for yourself the extraordinary person I know you are, and continually called to be.

cathedral

Composing: Onwards, Soldier

Thank you – to everyone who has reached out to me and offered their support. To those I know, those I’ve lost contact with, those I am yet to meet. To my friends, my family and M. To the world that inspires me. To the music that lifts me up, tosses me around and makes me cry. To crying and being OK with it. To words, and their potential power. To escaping this world through composition. With you all, I am doing better every day. 

It won’t come as a surprise to you that reading and writing are my refuges when times get hard. There’s nothing I like to do more when in pain, physically or emotionally, than to curl up on a sofa with a blanket and a cup of tea and read or write. I can stay there for hours and hours and not know it until I happen to glance at a clock. It’s a realm of worlds to escape to, to find yourself in, and to learn from. There are days when I feel like I’m reading about myself. There are days when the text seems so foreign I find it hard to relate. I laugh. I cry. I’m inspired. I’m frightened. I escape.

But it’s often writing I turn to when things are hardest. I didn’t have much of a chance in hospital. In fact, I couldn’t even hold a pen to try to write. But that didn’t mean I didn’t write. There were lots of words going round in my head – too many, I was told. “Why do you look so pensive?” one of my Doctors asked. I didn’t have a reply, because I know when I’m writing, it sort of becomes a state of being. A sort of all encompassing energy that fills the soul and provokes, encourages, and makes you pensive. I’m probably an awful bore when I’m in a writing mood, sitting or lying somewhere, and messing about with words in my head until something seems right, like it perfectly captures a specific mix of emotions at a specific moment. Sometimes it doesn’t fit. Then I tweak, and try again, until it’s perfect. Then it’s transcendent. Then it hits the paper, and becomes real. It’s hard to describe if you’ve never experienced it.

I have always found music powerful. Anyone who has sat beside me regularly at concerts and services will account for my spontaneous tears during works that hit me somewhere I wasn’t expecting. There is always some melody, some harmony that binds me so intensely to the music. So I’ve always thought that words were inferior. They could never have power alone. But a conversation I had a couple of months ago made me realise that words can have power too. A different power, but one nonetheless. Words in a line can be like notes on a stave – each is placed specifically, with purpose, with precision, to give a special emphasis. Each line, each stave, contributes to a work that introduces itself, builds, reaches a climax, fades away, reflects upon its themes, and comes to a conclusion. Both have the art of composition.

It seems first wrote about this at the end of March, but it was only on clearing out the notes on my phone earlier today, having just spent a while writing, that I came upon it, a musing I had profoundly (!) entitled ‘Composition’ :

I’m watching you and the notes spinning around in your head

Until one stops you, and holds your attention. I see it in your eyes.

Like the key in the lock, it’s the one that fits.

I don’t think you can see me standing here. Or maybe you just don’t want

To talk today. That’s OK. I understand.

The strands of music floating in your mind almost seem to sing before you.

I can almost feel the joy of your music before you even reach me.

We don’t need to talk to feel it.

Now – your anger, the desperate beat of the drums, like thunder in the night.

Now – your pain, that distant violin. It’s far away, a secret voice.

You’re trying to hide it, but struggling to keep in tune. It’s OK. I understand.

Now – a hint of joy, a skipping flute, climbing higher and higher into a bubbling of laughter.

And now – the righteous organ, steady, steadfast. The assurance of your love. Powerful.

Each phrase is just one thought, in one second, in one day.

Will you sketch out your daily symphony today?

Not today, I feel. But maybe tomorrow, today’s loose thoughts will weave together,

Into a music that will stir up a whirlwind inside every longing heart.

 

And I? Well I think my composition is less measured than yours.

There’s nothing official about it. No rules. No bars to confine my notes.

Just the pen in my hand, growing sickly warm, and the paper,

Scrunched up to hide the truth. It’s my pain, raw and bitter.

It’s my hope, lasting but renewed. It’s my faith, constant yet terrifying.

Maybe somewhere you’ll find my love in my words.

I’ve just scribbled them down, words streaming out like screams or laughter or tears.

It’s done for today. Too painful to carry on. Maybe I’ll also try again tomorrow.

Do my words have melody and harmony?

Do I consider each one as you do your chord?

Is there contrapuntal movement or fugal themes? I don’t know.

Maybe you can see something I can’t. But for me, well I forget what I’m writing.

I toss words about, no structure, no plan.

They’re special because they’re the words written on my heart –

Streams of words, each one just one thought, in one second, in one day.

 

But maybe you feel like that too. Maybe you and I are more similar than we think.

For we’re both composing, you and I. We both sing.

We give it our joy, our pain, our stress, our anger. We give it our love.

It helps us to love in return. To serve. To appreciate. To grow. To learn.

Words and music, they can dance alone. They can dance together.

So I’m standing here, thinking about my words, and your music,

And knowing the gifts that they are, and the gifts that they’ll bring.

And I’m hoping they’ll change the world, recompose how things ought to be.

Clearly, written word as having the power, like music, to convey something that is beyond the spoken is a preoccupation that my mind has been dealing with for quite some time without me realising. And it’s a preoccupation that has not left me since leaving hospital.

One of the hardest parts of dealing with my diagnosis and life since, has been knowing how close I was to dying. They told me, when I left, that if I had left it another hour before being taken to A&E, my chances would have been far lower. When ketoacidosis takes hold at critical level, it takes hold fast. And indeed, I wrote about Graham, and his death in my last post. To see someone die is horrible. To be surrounded by death, and feel it close, is something I never want anyone to have to experience.

I had to find a way of writing about it, dealing with the ‘what ifs’ that have been bothering me. What if I had died? What if I had left the people I love behind, some without ever telling them I loved them? How could I bear the pain? So I wrote. And since, I have better escaped the thoughts. It will take a lot longer to put this behind me, if I ever can. But I’m hanging on, surviving through composing. I can only hope my words are some way to be as powerful as music. They made me cry, at least. But then again, I find tears are quick to my eyes today.

Onwards, soldier, to the end.

At last, Night is come. How softly, sweetly

Her footsteps tread upon the earth

Which was my transient home! And O, how

Tender her voice, singing Peace, and proclaiming that

I am come through the wilderness, the darkness

apprehended, though yesterday I knew not where to turn.

For here is the Way; I trace it, written on my heart.

And I am heading onwards to the heavens, to the height of

Those gold tipped mountains, sustaining the

Last remaining rays of light and calling me home.

My tears flowed fast when I slipped away, as

Dust through your fingers, too terrified

To stay to hear the anguished cry when you saw

Life’s heaving breaths shallow into stillness.

But here is the Truth; a sting oppressed by comfort:

There shall be neither death, nor sorrow, nor crying.

So, it is time now to go onwards, to the stars, to the radiant

Stars, to bathe in celestial light, relieving me of

My tired breast, heavy laden with day’s

Cruel toils. And so, I walk, placing step by step,

Gaining strength from some invisible spring of life. And

I perceive how great a war life is to be fought; how I was marked

To fall at the very height of battle. And oh – how I have fallen!

But somehow, I traverse the valley, by a gentle breeze

Lifted beyond the weeping grey clouds that at present beset

Your heart. Do you see, my love, that here I am

Free? There is no longer need to mourn; it is

Here, with Love, that I am called to be.

For here is Life; I know Him well.

Like a balloon with no air

This was incredibly hard to write. It is a collection of thoughts that struck me whilst I was in intensive care over Easter Weekend and the following week. It is incredibly hard to read, now. Thankfully, I am doing much better now. Today I am proud to say that I have not cried – not even one tiny tear. I have smiled today. Today I am doing better. There is a long way to go, and I’m definitely not the same as I was a couple of weeks ago, but today, for the first time, I’d be OK with saying that I’m fine. Not great, but fine. 

But sometimes life throws a curveball at you that’s completely unexpected. It winds you. Leaves you flat on your back. Destroys your confidence. And leads you to rebuild yourself, changed. And it is ok to feel angry. To feel powerless, guilty, upset, destroyed, broken. But you’ll get better, with time. It takes time, faith, and a lot of people that you love. Together, you’ll find a new way of living. And the sun will slowly come out again. I am confident that I will live every day to the full, knowing that no day is ever taken for granted. Life will be different, but it won’t be any less worth living, and loving.  


How are you today? They ask as if everything’s normal. Like they expect me just to say that everything’s fine. Because that’s what we do in Britain. We say everything’s fine. We say everything’s fine, but inside, nothing is really fine at all.  So I say I’m OK. And instead I ask whether it’s still raining outside. Because I can’t see the sunshine anymore, the streaks strained through the dust onto the sanitised wall. Yesterday there was a bit of sun. Today, they say, there’s none at all. Black clouds.

I could have told you that. Because I wasn’t really commenting on the weather.

Today I’m not fine.

I feel like a balloon without any air. A dying balloon, a mockery of its former self, sagging away in some dark corner, the life slowly seeping from it. The symbol of a joy that once was. Because everything was going great. The balloons were out in life. The spring time blossom was in full bloom. The sun was shining. I had just visited the University where I hoped to go in September. I had healed a broken friendship. I had made new friends, found new love. I was performing again. I said yes. I felt optimistic about my A levels. I could see a vague shape to the next months. It was like my life was full of shoots emerging from the soil, each on the brink of bursting into a new flower.

But it’s not the same anymore. Now those shoots have withered. Now I am like a balloon without any air. Now the black clouds are overhead. Thrown by a violent storm off the mountain I have climbed, I feel crushed, crumbled, curled in a ball in the pit of mud at the base. Winded, struggling to breathe, I stand and fall. I don’t have the strength to climb any way back up today. In fact, I don’t know when I’ll be able to take another step. My shadow laughs at me from the peak, veiled by the dark night. Ignore it. Move on. She’s just the shadow. The last remaining bit of who I was. Where I was. On top of the world. But she is laughing at who I’ve become, a withered drooping plant. She’s stirring up a storm. I cannot face climbing the mountain again.

How are you today?

Today I am struggling to be fine.

Would you not feel the same, if they told you that you had been dying? If they told you that your body had been eating itself for weeks? If they told you that you were in a critical condition? If they told you that your life would never be the same again? It’s critical ketoacidosis. You’re in intensive care. And you’re not going anywhere. When you do, you’ll be in chains.  Going back uphill. It would be easier just to give up now.

The nights are the worst. They bleed me. Poke me. Measure me. Drain me. Revive me. Feed me. Pity me. They look at the TV above my head. It tells them more than I ever could. I can’t move my head. I don’t have the strength to pull up the blanket, but I can’t stop shaking. Please help me, I scream. But no one can hear the screams. They’re trapped, circling incessantly inside my head. I can’t reach the call button. It mocks me. I’m thirsty, but I cannot drink. I can’t speak – the words don’t come. The nights are the worst. Alone. Dark. Scared

I don’t know who I am anymore. Why me? Why now? I am defined by numbers, units, doses, needles, carbohydrate counts. She’s the girl who almost died, they say as they walk past. Ward round. Judgement. They all stand there. Looking at me. Like an animal in a cage. The only one under 65 in intensive care. It shouldn’t have happened to her, they say. I look away to hide the tears. Because the pity doesn’t help. They can’t change it. They can’t do anything. The pity in their eyes kills me.

Today I’m not fine.

I’m the one who’s angry. Angry that I can’t break free from it. Angry that it’s me, and it’s here. Angry that I can’t seem to see past the night. That I will have to fight to survive every day. Angry that my entire future has seemingly been defined with the blink of an eye. Angry that I didn’t see it coming. That I don’t remember anything. That I will face medical complications for the whole of my life.

I’m the one who’s sorry. I’m sorry this has happened to me. To us. That you will always be worried about me. That every night there is a chance I might not wake up. That you will always have to ask ‘what if?’ That you lay awake last night, not knowing. That we will never be able to escape this. That I cannot eat without counting the cost. That life has to be planned to the second. That my life is like a rollercoaster ride of highs and lows, and that I can’t stop screaming.

I’m the one who’s scared. Scared of what could happen. Scared not of if, but when. Scared where I’ll be. Scared who I’ll be with. Scared that they won’t know what to do. I’m scared of going home, because then it’s just me and the monster all alone. Scared of going back to school and facing all the music. Scared that everyone will walk away. Scared of coping with exams and medication at the same time.

How are you today?

Today I refuse to pretend I’m fine. Today I am like a balloon without any air.

And I’m so sorry. I’ve been so caught up in my own whirlwind that I haven’t seen that you’re hurting too. This makes you angry too. It makes you scared. And yes, it is different for you. You can’t understand my fear. I can’t understand yours. But deep down, maybe both our hearts are grieving for the girl that was. She’s gone, we both know that. It’s a new girl who’s lying here, on this bed. They’re similar. But something’s changed. Hold my hand, please. Let us be together, alone in our fear. This is all my fault. I am so sorry.

They say I can do anything, I just have to find a new way. They say there’ll be light eventually. They say September is a long way away. I might still get there. But they don’t know that the man in the bed opposite me died last night. His name was Graham. They don’t understand that Death was here last night, so close I could have reached out and touched him. Right here. There was a sustained bleep and the anguished cry of his wife and children. That’s how I knew he’d been taken. It could have been me. Do you see? I close my eyes. The darkness can hold me for a bit longer. It seems fitting for this morning. Shut the curtains please. I don’t want to face the people today.

Do they realise it could have been me? They don’t know. You didn’t see. Whether you live or die here seems equally possible. It’s like walking on a tightrope with your legs shaking badly. Like you’re waiting to fall. And you don’t know who is going to be there to catch you. Or if there’ll be someone to catch you. No one could stop Graham from falling.

Darkness please hold me a little longer.

How are you today?

Today I am like a balloon without any air.

T1D

Ready to be 18?

Written on New Year’s Eve… and posted today because these last couple of days have just been a bit of a blur with family, New Year appointments, travelling and facing the reality of work!  

Today is the 31st of December. New Year’s Eve. And tomorrow will be a New Year. 2018. Today is also interesting, because it is the only day that scientists reckon in history that everyone who is an adult was born in one century (the 20th), and everyone who is a child was born in the following (21st). Random fact, I know.

But that fact hits home for me, because it means that I am nearing the end of my childhood. In just a couple of days, this millennium baby will be 18. A scary thought for me as well as you. Adults have always been who I’ve looked up to. And now I am going be one, and for a while I’ve struggled with the question of whether I will capable of the burden of wisdom, assertiveness and self-belief that seems to magically be present in the adults in my life.

At the end of the school term, this was really worrying me. I was sat in my House, probably looking a little forlorn, in the process of finding snippets of the Christmas story in the Greek NT for translation later in the day, when my tutor came in and asked me what was wrong. Nothing, I said. It’s not important. But it is, he said. You are worrying about something. And I just said it: I’m not ready to be an adult. I don’t want to let go to the innocence and protection of childhood. I want more time.

And he said: So let’s make it stop. For two minutes. Let’s think about your last year of childhood. And let’s think about whether you’re ready. And so we reflected on this last year, what has happened, and how it has changed me.

Learning to drive: At the beginning of this year, I couldn’t even contemplate getting in a car. When we had been in America in 2015, staying with our friends from Mississippi, I had been scarred by them physically pushing me into the driver’s seat of the hire car and telling me to drive around the driveway of the property. I couldn’t do it – I was shaking and terrified that I would kill someone. They said I’d be perfectly safe. Their son, one year older than me, was driving by himself aged 16. So could I. But I couldn’t, and there were tracks through the grass to prove it. So suffice to say I was terrified that I would be learning to drive. I did want to, the freedom afforded would be worth it. But getting in the car for the first time was scary. And so it went on. Each time I learnt a new procedure, I was convinced I’d hit someone. Then I passed my theory test first time. And my driving did get better. And I became more confident on the roads. And I drove to school every day, and home again. And then I failed my first test. I was ok about it – 1 major and 1 minor. My driving was safe, I just made a stupid mistake. I’d try again. I failed again. And that time I was mad with myself. Old thoughts of failure came raging back, and I could feel myself getting more and more agitated, and frustrated and angry. When I got home, both my parents were out and just sat in my room and cried because I thought I had failed. I had failed myself, and I had failed my instructor, and I had failed my parents. It would be 2018 before I had any chance of passing with the new test regulations. And I didn’t know what to do to stop myself from drowning in this dangerous thought whirlpool I recognised so well.

I remembered that when I failed the first time, I read a book that one of the Canons at the Cathedral had sent me. JK Rowling’s Very Good Lives: The Fringe Benefits of Failure. And so, I took a deep breath and opened it. Unlike the first time, I don’t think I read much of it. I just had to look at it. I knew that someone had sent me that book because they believed in me; I wasn’t a failure. And I knew I had to get back in the driving seat. I’m going to take my test again. Of course I hope I’ll pass. But if I fail, I’ll find the book again, and I’ll be OK.

I was changed because I saw that in the grand scheme of things, people love and appreciate me for who I am, and not whether I can drive or not. I was changed because I picked myself back up. And I have been changed, because I am beginning to understand what it is to succeed in failure.

Being operated on: Being operated on was a big thing for me (background to the operation is here). I had never had an operation before, and I was very scared, because the operation I had did carry risks, not only that, with my blood condition, I could have had a dangerous bleed, but also that it might not stop the nasal aspect of the condition, it could actually make it worse, especially as by working on both sides of the nose, they left me with a very thin dividing cartilage which might collapse or be easily perforated. And to save you more gory details, the operation wasn’t going to be as easy as it should have been. In the pre-op meeting, the nurse could tell I was nervous, as we went through all the major risks of surgery. And I just broke down and said: I’m scared. I took down that barrier of pretending that I am not afraid. And it has let me live for 6 months without being admitted to hospital with major blood loss.

And I was changed, because I admitted I was scared, and I let myself be vulnerable.

Athens: In April, I was able to go to Greece for the first time. As an aspiring Classics student, this was AWESOME. I was soo excited. We visited all sorts of Classical monuments, from the Parthenon (obviously), to the Roman forum, Hadrian’s library, the temple of Olympian Zeus, Sophocles’ prison, the Panathenaic stadium and more. We ate lots of ice cream, wandered all over, and even had cocktails on the waterfront at Piraeus, and watched the sun set behind the Acropolis, painting the sky with flaming pink. What more could you want? Well, this trip didn’t just confirm to me that my UCAS application would not be in vain. This trip showed me the cross-cultural community that exists in faith. The last day that we spent in Athens was Palm Sunday, and to be honest, I missed being at the Cathedral, despite the eternity that is usually spent singing All Glory Laud and Honour whilst trudging around the entirety of the Cathedral, only then having to do the awkward side swapping to get back on the side you were seated on as you approach the nave. And I wasn’t in a very good mood. But it is evidently a custom in Greece to hand out orange blossom and real palms to passers-by on the street. Christ’s coming was everywhere. And throughout the next few days, and the rocky emotions accompanying them, I was repeatedly struck by the inescapability of faith, and the wordly body of faith that transcends a single heart, Church or country.

I have been changed because I realised that I couldn’t escape God however hard I tried, and that He would never escape me.

Ypres: Just after we went to Athens we were lucky enough to tour with our school Chamber choir to the Ypres Salient, notably singing masses at Ghent Cathedral, in St Martin’s Cathedral Ypres, and St George’s English Church Ypres, and performing at the Menin gate, and at various CWGC sites. It was a great opportunity to see the world with friends, meet new people, perform and hang out. Ice cream and chocolate featured heavily; unfortunately we were too young to join the staff in Belgian beer. We were also able to go to the cemetery where my great great Uncle, who was killed in the First World War, is buried, and leave a cross and wreath. It was a personally touching moment in the frenzy and chaos of a choir tour. But for me it was a difficult couple of days, coping with the emotions of being in a place that evokes so much sorrow and yet so much hope. It was difficult to share a room with 5 other girls with one bathroom. And it was difficult to get up there and perform, often very exposed, in buildings I wasn’t familiar with to larger audiences than we ever have when we sing in England. I have always been a nervous performer, but the tour took nerves to a new level. But I got through every performance, and by the end our conductor even said that I smiled sometimes. And at our last performance, singing at the Menin Gate Ceremony, I was able to sing with strength for the men we were representing, to smile and to talk with pride with visitors who had come to the Ceremony from across the world. One woman burst into tears when I was able to converse with her in French about our school and why we had come to tour. It was a very special evening.

Coming back to England, the performances that stacked up were more high-profile and exposed than I had ever done, with an evening at St John’s Smith Square singing Duruflé’s Requiem, soloing the Pie Jesu, followed by performing alongside Tenebrae and playing in our quartet for weddings. But each time, despite only being able to think ‘I can’t mess this up. I can’t mess this up. I can’t mess this up,’ I survived, remembering that night at the Menin Gate. And each time I got a little bit more confident. It was a massive achievement to be able to sing Darke’s In the Bleak Midwinter at Nine Lessons and Carols in December in front of the whole school. And for once, I am excited as to what the New Year of music making holds, especially upcoming performances at the Cadogan Hall, and competing in the Barnado’s Youth Choir of the year competition in March.

This year the nerves didn’t beat me. This year I was changed, because I learnt how to channel nervous energy into music that captured people’s hearts.

Doing the impossible: Two years ago, I was told that taking an A level early would be impossible. Taking AS Greek would also be impossible. I would have no lessons, no teachers could fit me in. I would have to juggle the work on top of 4 other A levels. I would not be given compensation, I would not be given curricular help. I wouldn’t get study leave. And ultimately it wouldn’t be worth it, because I couldn’t give it the time. But I wanted to challenge myself.  Whilst taking my GCSEs, I took French AS. In September, I saw the head of MFL again. What can I do, I said, to convince you to let me take the A2 in June. Nothing, he said. It’s not possible. So I took my timetable to the Head of Academic Studies. I want to do this. Show me how we can fit in time, to make 5 A levels possible. She did it, warning me to stop if it got too much. And slightly nervous, I knocked on the door of the U6 French class, and said that I would be joining them for the year. And so it began. That afternoon, I went to the Head of Classics, and we started Greek. Let’s do this, she said. And so my Lower Sixth year was characterised by never-ending lessons, my free periods occupied by French, and with Greek lessons before and after school. I was so tired, most of the time. But it was worth it, in August, when I received the results that proved everyone wrong. I did it, and I am now taking a second year in Greek. Looking back, I probably did cause myself a lot of unnecessary stress, and I sacrificed a lot of myself and my energy to working late into the night for two exams. I should have taken my Deputy Head’s advice, and stopped when it got to much. I would sit on my floor at night and ask why I was doing it. I would pray for guidance and rest. Looking back, I probably should have thought a bit more about what I was letting myself into before I jumped in headlong. I should have taken more time for rest. But, having often leant on God, I had managed it. And even if I hadn’t, my attitude to results had definitely changed.

And so I was changed, because I realised that with prayer, motivation, and lots of hard work, the impossible is always possible.

Becoming a prefect: In May, I was made a School Prefect. It’s a job that involves many menial tasks, running around the school, as well as managing behaviour in lunch queues, tuck shop queues, rugby matches, in corridors, and during breaks, and acting as a secret spy network for the Head. Someone’s been feet away from a plate being dropped from the third floor window of one of the male houses, we know about it. Someone’s suspended, we know about it. Someone’s being bullied about it, we’re their shield. Someone’s looking under the weather, we’re there. Someone needs someone to talk to, we’re the closest shoulder to cry on. Someone looks sad, we’re a bit of sunshine. Someone is jeopardising their livelihood by not crossing at the zebra crossing, we have eyes in the back of our heads. And that’s why it such a rewarding role. You are daily on the front line of issues, disagreements, break-ups, inappropriate behaviour, successes and failure. You’re the link between pupil and teacher. You lead the school, but you walk with the school. You share in laughter and tears. And I’ve been able to hold people’s hand and say I’ve been there. This happened to me. I’m here today. I got through it. And they squeeze my hand back. Thank you. It’s so simple. But it can be hard too. When I first got the role, I sat down with my Housemistress. We talked through what I would find difficult being a Prefect for the School. I said that I would probably find time commitments hard. Sacrificing lunches and breaks to stand in freezing weather, in the snow and rain, to shout at 16 year old boys who are jumping on each other in the canteen queue wasn’t exactly something I was looking forward to. I liked to have every minute possible in my control, either to work, or to take time out. She acknowledged this but said she didn’t think it would be a problem. You have a gift for giving of yourself when you have nothing left, she said. I think you’ll manage. Here’s what I think you’ll find toughest. Giving too much. You are too compassionate. You bear everybody’s problems, and sometimes you forget that there will be problematic times for you too. And she was so right. It is such a privilege to stand beside pupils through the good times and the bad. But I have had to learn to say no sometimes. I can’t humanly cope with stretching myself between 5 places. I have had to prioritise and put my health, work and primary duties first. And say no to things that other people can, and are willing to do. And in doing so, I’ve been able to spend more time doing the things that I love within the school, acting as Librarian to the Choirs, serving in Chapel, leading Debating, singing in choirs, playing in quartets and orchestras. I do as much as I can, and say no to things that don’t matter. But my door has always remained open.

But I have been changed, not only because I have learnt the joy of sharing in compassion, and being a face of light in darkness, but because I have had to recognise the balance between giving freely to others, and giving too much of myself.

Community Holiday: This week was probably the stand out week for me this year. It is one of the greatest things that our school is able to do, to host 20 children with disabilities ranging from high functioning Autism, to Cerebral Palsy, ADHD and Down’s Syndrome, and to provide a team of student volunteers, assisted by medical and teaching staff, to care for them 24/7. I use disability in the loosest possible term. Because although some of these children were wheelchair bound, partially sighted, provoked by the smallest movement, or the slightest change in environment, had no verbal capacity or no concept of social conventions, they were some of the happiest and most able people I have ever had the chance to work with. Each of us was paired with a child to care for overnight. I had no idea what to expect, and I was in for a tough week. My night time child was mid-teens, with ADHD and Asperger’s. She came from an incredibly difficult social background, and arrived  with little other than the clothes she came in. For a week with activities ranging from high ropes, to muddy trails, swimming, the beach, a theme park and a boating expedition, she had one spare shirt, and a towel. It was heart breaking to see how scared she was of the shower, revealing to me that she has a bath once every other week. And when we tried to bathe her, she wouldn’t let anyone touch her. She was a runner, and I spent a large portion of my week chasing after her down the corridors, as she sprinted away from medication, meals and bedtime. And during the night, she would wake up, screaming. I ended up having to take three nights off, just so that I could get some sleep. It was certainly difficult. But seeing her smile in the morning made it worthwhile. And whilst of course I remember the big moments from the week: ice cream on the beach, seeing Aladdin at the theatre, the pirate ship at the theme park; it is the smaller moments I remember most fondly: after spending an hour in the dining hall, successfully managing to coax a child into eating a single meatball, followed by an empty plate 10 minutes later, or getting a child to sit in the sing-song ring for the first time. It was a week full of smiles, laughter, and the greatest joy. To see the children’s faces light up was incredibly special. By the end of the week, I had built a connection and a sense of trust with all the children. It was incredibly hard to say goodbye. And whilst the week faded into joyous memories, the abiding peace that I felt having sung Kumbaya to the children at the end of each evening is something I still hang onto.

I was changed because I was forced to lost myself and my inhibitions in giving of myself for a week. I was changed because I could make a little girl who had nothing experience everything. I was changed because I couldn’t communicate through words, but had to communicate through showing love. And I was changed because my appreciation of the value of life, and what is to truly live, was transformed.

Lambeth Palace: In the middle of July, I was lucky enough to have just come back from the beach, had taken a shower, and was just contemplating the bubbles in the boiling pot of spaghetti, when my phone flashed with an email from the Dean of the Cathedral. I can remember that moment vividly; I think because that email, and everything that has happened since, was completely unexpected, completely humbling, encouraging and so completely scary, it has become imprinted in my mind. I was invited to be interviewed and speak at Lambeth Palace about my experience of being young and in a Cathedral. I have to admit that, at first, the stubborn part of me thought about saying no. I didn’t want to be dragged out again as the ‘token young person.’ But I knew this was an amazing opportunity, and something made me reprimand myself for thinking as I had. I had to go, and clearly, from babbling on here too much, I have a lot to say. And it was a day that I will never forget.

But what was perhaps more affecting for me than actually what I said, or what my heart said, was the response I had following the evening. I remember being on the bus back to Waterloo, and I did feel slightly in awe of what I just had the opportunity to do, and I had a lot of thoughts and prayers buzzing around in the back of my mind. But what I was not expecting was the torrent of messages, tweets, hugs, calls, emails and letters that I received, and all the conversations that arose. I felt such divine love. I was so completely overwhelmed. I didn’t realise that people had been so touched and affected by what I had to say. In sharing my experience of faith, and my journey, I could spread the word of how faith has saved me. In faith, I could touch people. I know that the conversations and opportunities that have arisen from that one night are not over. I keep receiving new reminders of how transformative sharing and serving can be. My thoughts are continually racing. I don’t think it would be so far to say that whatever indescribable glorious thing I experienced that night, and the ongoing friendship and fellowship,  has been utterly life-changing in how I see the future unfolding. And I know there is so much more to come.

I was changed, because I allowed myself to openly speak from my heart and share who I was, and who I have become in faith. I rejoiced with those around me, and have felt such connection to so many more. I acknowledged the indescribable glorious thing.

And somewhere in the midst of the speaking, in the frenzy of the following days and weeks, I was changed because I heard God calling me.

This year I was changed. In so many different ways. In ways that I could never have predicted at the start of the year. Changes that arrived on unexpected days, in unexpected places, with unexpected effects.

My tutor and I sat there. Me in tears. His eyes gleaming with his own appreciation of the significance of everything I just told him. And he said: I think you know what I’m going to say. You are already adult. And to be honest, what I’ve learnt is that the secret of adulthood is knowing that you’ll never really feel like one. You’ll never want to let go to the protections of childhood, because the nature of adulthood is incredibly scary – you are getting ready to venture into the world alone. And you need the strength to be able to thrive. But since I met you, 4 years ago, you have continued to grow in strength and love. You’re continually changing, you’re learning to find that strength. You’re ready to take on this world, and fly.

As I watched him leave the room, still clutching the Greek NT, I sat in silence. It was a profound movement of stillness and self-awareness. I realised that I did change this year. I grew in resilience, in openness, in wisdom, in empathy, in perseverance, in failure, in success, in leadership, in trust, in vulnerability, and a lot in faith. And so, sitting here on New Year’s Eve, I’m not so scared anymore. Adulthood is not about perfect wisdom, life-experience, maturity. Adults still fight battles with self-belief. But I think adulthood can be about taking your childhood, and, acknowledging how you have been changed, finding the courage to fly.

“We are both the authors of our own stories, and the heroes of our own destinies… A new year is just another day. And the dawn of each and every day brings equal hope. We never know which change we make will be the one that will twist our story for the better, but I can bet you that it won’t always be the change you make at the beginning of the chapter, at the beginning of the year, but the one that comes on an unpredictable page, on an unpredictable day. So take every second, every word and relish it. Have courage, faith and make changes each and every day, even when you are afraid to do so, and you will live your life to its full capacity. You never know – perhaps your story will be read for eternity.”~ Me, one year ago, A New Year Hope

When I wrote this a year ago, how little I knew that it would come so true. The best plot twists this year have been unforeseen, shocking, scary, and emotional, but all utterly life-changing. And so, with myself as my own author and my own hero, I am once again ready to take each day as it comes. I can’t wait to experience more unexpected life-changing moments in 2018, and I’m so ready for all that this next crazy year is going to throw at me – from finishing school to leaving home.

And although I never thought I’d say this, I’m so ready to be 18. Bring it on!


My thanks go to all of you for supporting me throughout this year. It’s been one of up and downs, but I have been so touched by all your prayers, emails and messages. You are all amazing, and the love I have felt has been so overwhelming and has lifted me up in darker days. I give my love back to you, and wish you too all the best for this new year ahead. May you continue to love, laugh, and live.

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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