ArT1st

For the past few months I've been involved in helping an incredible group of people organise ArT1st Live. Art1st was founded in 2019 by Professor Partha Kar, National Specialty Advisor for Diabetes at NHS England, to unite people who have diabetes and showcase their creative talents. When a live event was out of the question in June 2020, ArT1st went online and people submitted their art on social media. These were shared across various social media platforms and gained lots of praise, attention, turned into an online event and reignited the appetite for a live event. 

Fast forward to Saturday night, and over one hundred people gathered at the prestigious Draper's Hall in London, most living with diabetes, some not, for Art1st live. The evening saw various pieces of art exhibited, various performances from people with diabetes, an auction and dinner. We were lucky enough to be joined by Sheku Kanneh-Mason and Ed Gamble. We witnessed some incredible talent and there were big smiles all round the whole time. 

I was honoured to have been asked to speak about JDRF and the person with diabetes perspective, and reflections on the event. I've decided to share my speech here, because whether you were at ArT1st Live or not I think it rings true for everyone living with diabetes. 

Here goes...

"It's amazing to see so many of you here celebrating the talents of people with Type 1 Diabetes in aid of JDRF. I know many of you will know about JDRF and their purpose, but I'll give you a brief rundown so we can remind ourselves of why we're all here tonight. JDRF fund research to cure, treat, and prevent Type 1 Diabetes - through work with government, academia and industry they accelerate research in the UK and within healthcare policy - they ensure that the outcomes of research are delivered to people with Type 1 in the UK. They provide support, information, resources and a voice to people with Type 1 Diabetes and their families.

I was diagnosed when I was 11 years old. I remember it so well. It was a sunny evening in June 2009. I remember the mouldy orange I was given to practise injecting with, and I remember doing my injection all on my own for the first time. I remember being given a blue drawstring bag with a book in it called "Type One Diabetes Made Simple", it was from JDRF and it helped me understand what insulin does - the information leaflets and resources helped us all cope with my diagnosis. I'm 24 now, and I've lived  with it for 12 years, for half of my life.

We're all here tonight to celebrate the artistic talents of people living with Type 1. Through drawings, paintings, photography, music, crafts, dance, poetry and drama we are getting an insight into the minds of some very talented people. 

Living with Type 1 Diabetes is hard. In the blink of an eye you're thrown into a world of injections, pump changes, carbohydrate counting, hypos, hypers, sleepless nights, hospital appointments and all the emotions under the sun as you learn to navigate what will become a very different life. It's unpredictable, it is relentless, and I'm sure all of us with diabetes are all too familiar with the term "burnout" - it's a constant learning curve, a constant balancing act, and you could in some ways say it's an art. 

One early sense of the definition of art is closely related to the older Latin meaning, which roughly translates to "skill" and I think people with Type 1 Diabetes are rather skilled. It's not easy trying to replicate one of the functions of a major organ 24/7 and I reckon we are the only group of people who could correctly calculate the carbohydrate count for a plate of food just by looking at it. So much goes on behind the scenes, so that we can function and stay well, and keep up with our peers. If you have struggled with your diabetes like me, or you're going through burnout right now or if you hate it and it's the last thing you want to think about - I am sure you are handling it with grace, because just living with it can be tough enough. 

I often believe that my blood sugar should be perfect, if I'm going to give insulin and put in all the effort then my blood sugar should be perfect, and if it isn't then what's the point? But the thing about art is that it doesn't have to be perfect. It can be a work in progress, it can be a case of trusting the process, and whatever comes out on the paper or the canvas is your best. And that is all we can do. Sometimes, we have days where our blood sugar really is perfect - and it is such a thing of beauty that lots of us screenshot it and post it on social media, savouring it forever, a good blood sugar day - immortalised, a reminder that it's not always bad.

And even when that line isn't straight, many of us have found art in it anyway - in the Libre graphs that look like cats, or in the Dexcom lines that look like a mountain range.

Art can be outwardly beautiful, or we can interpret it as just that. For example, I like brutalist architecture. Brutalist buildings are characterised by minimalist constructions that showcase the bare building materials. Some people think they're ugly, I think they're great. The structural elements being on show makes for some great lines and angles when taking a photo, and being able to see the materials means we can see exactly what went into making that building.

I often help out with a project called the Tree of Life project at the diabetes clinic I used to go to when I was younger. It's one of my favourite things ever. It makes such a difference to the lives of everyone involved. The concept is that we are all a tree, with roots, a ground, a trunk, branches, leaves, flowers, and fruits. Each one representing a part of you. Your branches are your hopes and dreams, your roots are where you come from, your leaves are the people you love, and so on. We all get to draw our trees, and I love seeing the way the children draw theirs - and seeing their imaginations come to life - I've seen some trees with pink leaves, someone once drew a baby whale where a squirrel would go, I've seen some multicoloured trunks. 

These trees serve as a reminder that there is so much to us, so much more to us than just diabetes and we can withstand storms, like trees do. The one thing we always say to people when drawing their trees is that you don't have to be good at drawing, because whatever you create, that's you, that's your tree and that is art in it's purest form. 

Art is what we make it, and life can be what we make it too. 

Even if you're here tonight as an ArT1st contributor, or you're here as a guest, and even for those who aren't here at all tonight, there is no difference. No limit to your talent. We have all seen both the beauty and the pain in the colour blue, and we recognise that we are not limited in any way by the cards we have been dealt, but nights like these remind us that we are in some ways, enabled by them. 

Living with Type 1 Diabetes can be so ugly, it can be so difficult and how wonderful it would feel to be able to throw in the towel and not think about it every again. The fact of the matter though is that we have no choice, and we carry on, performing a balancing act - walking that tightrope - and trying to master an art that can perhaps never be mastered. Above all, what makes us who we are lies in our hopes, in our dreams, in our talents." 

The night was truly special, and it was magical seeing it all come to life after months of planning. The team did a spectacular job, in particular my first and best 'diabuddy' - Adrian Long - and it was an honour to be even just a small part of this event. 

Chapter 12

I was 11 years old when my immune system killed the beta cells in my pancreas that produce insulin, that control my blood sugar. I took on a job that my body could no longer do for itself - insulin production, blood sugar regulation, a bodily function that most people don't even know about because they don't even have to think about it. 

Those tiny cells in my pancreas, destroyed by my own immune system. Once releasing the right amount of insulin for my body, the correct amount needed to regulate my blood sugar - and suddenly I had to do it all myself. 

I don't remember much of a life without Type 1 Diabetes, I can't tell if that scares me or if I'm grateful, grateful for another year of course and with each year that passes I forget what I'm missing a little more. 

I distinctly remember being diagnosed on June 21st 2009, it was a sunny summer evening when I was admitted to hospital. All I could really think about at the time was how the insulin would make me feel better, and focused on learning the symptoms of a low blood sugar. I injected my long-acting insulin on my own on the first night I was in hospital, the orange was weird and smelly after lots of other children practising on it over what looked like 3 million years. 

I felt great in hospital, I finally had insulin again and felt ready to go home after a few hours. I ended up staying for three days, and I remember there was a girl opposite me who had just had her appendix out - she looked really unwell, and I thought to myself thank goodness I'm not her. But when she went home she recovered, and diabetes was coming home with me.

I was very matter of fact about it, it was just something I had to do to stay alive. I made every effort to make sure I wasn't just that girl who was diagnosed with diabetes. I won't lie, it has played a part in who I am today, because how can I go through what I've gone through in the last 12 years and not be impacted by it. 

I wish I could tell you it's been easy, but I don't feel like sugar coating it. It is hard, but I had to accept that my life had changed and I had no choice. But don't get me wrong, it is fine for the most part, I promise, and it's about recognising that it's a balancing act, and finding the calm amongst the chaos.  

I didn't feel the impact of my diagnosis because I was young. The early days were good. I knew what it meant but not really. I don't remember feeling sad about it as such. I'm sure my parents did. I suppose I didn't anticipate a struggle, I was supposed to be okay, I accepted it and everyone told me I would be. I am "okay" but it was supposed to become routine, like brushing my teeth, right? 

12 years later I'm not unscathed though, I've got some background retinopathy and I'm in active treatment for an ED that only affects people with Type One Diabetes. 

They say having Type One Diabetes is like being on a rollercoaster - because you're up, then you're down and then there are moments of calm, and it repeats. Relentless. You buckle up for the ride over and over again, it never ends. But thank goodness for insulin. For the fact that we can actually control (try to at least) our blood sugars and have the chance to live a life despite the diagnosis. As long as you're on that rollercoaster you're alive. 

When I was younger I took it in my stride, I had the routine down, I had good blood sugars. Until the first time I burnt out, and I realised that the toll wouldn't just be physical, but mental too. Diabetes constantly changes its face - you could eat the same thing and do the same amount of exercise and take the exact same amount of insulin every day, and still have different blood sugar results. And that's because it's just not that simple. The factors that affect blood sugar are almost never-ending and it's a constant stream of emotions.

But it is possible to control it and live with it, and when I'm at low points I certainly forget this. And I wonder what the hell it's all for. But when it's going well it's fine. I've never felt limited by my diabetes, or been treated differently because of it. I don't resent it either. It's given me experiences that I have loved, it's helped me figure out who I am but it is definitely not all that I am and it will never ever be, I've made incredible friends because of it, and being faced with my mortality more times than I would have liked over the years, has made me appreciate the good things in life - as cheesy as it sounds, it is a little bit true.

The thing about diabetes though is that it's fine until it's not fine. It's very fickle. I don't feel bad for myself but I have learnt over the past couple of years that it is okay to get upset about it sometimes, because it is a heavy weight to bear. The episodes of burn out have been all too frequent over the years, add diabulimia to that and you're not in for an easy ride.

When people hear that I have diabetes they often tell me they're sorry to hear it, and I tell them it's okay. Because it is okay, it really is, it doesn't upset me that I have it but as I said before, I won't sugar coat it or lie and say it's a "lifestyle". You have to vent about it and it does scare me sometimes. If you don't have it you will never know what it takes to live with it, and I say this in the politest way possible but you will never ever understand, I promise you. The amount of hard work that goes on behind the scenes so that we can keep up with our peers is immense. 

Reflecting on the last 12 years I wish I could reverse all these years of struggling - but I never asked for diabetes, and I never asked for the struggle. What a 12 years it has been, full of so many ups and downs, and not just with diabetes. I don't know what the next 12 years of my life with diabetes will look like, I don't know what the next 12 years of my life will look like in general, but all I ask is that I find the will and the strength to ride it out, to live harmoniously with diabetes, to deal with what might come my way. I'm still learning. 

I suppose this definitely is isn't the usual inspirational diaversary post that people might expect, but it's real, my version of events. I don't have a perfect HbA1c, I'm not an expert at controlling my blood sugars, I'm trying to recover from diabulimia, and sometimes I ignore diabetes all together, but I certainly try my best and sometimes that's enough. 

I know that absolutely no one gets to say they have an easy life, we all have a cross to bear and pain is relative. Our lives are beautiful, tragic, mad, and every other emotion under the sun all at the same time, and sometimes I really do just want to scream into the abyss - but I have a family that love me, friends that love me, the support I have I'll always be thankful for. The last 12 years have gone by in a flash and I often go back to 11 year old me in that hospital, and I wish I could just tell her - it won't be easy but you can do this, somehow, despite the challenge - and you'll discover a tenacity that you didn't think you had. 

I used to spend a lot of time as a child wondering if there was a reason for me being diagnosed, maybe there is and maybe there isn't. I do know that it isn't all doom and gloom, that is for certain. The light will come through the trees, even if you can't see it sometimes - and in the moments that you find yourself in the dark, well, let's not deny it, it's a bit crap. Let's allow ourselves to feel that. But hold on. 

That has to be the overarching message here, and it has to be okay, because there is no other option.

Onwards.