Losing sight

Deutsche Übersetzung

I don’t know who will read this. I don’t even know why it has suddenly become important to write it, but for whatever it’s worth, this is an account of an event in my life that changed everything.

I lost my sight over the course of 12 months from late 1999 to late 2000. It was mostly my fault that it happened. I was diagnosed with Type I Diabetes when I was a little girl. At the time they explained that I would have to eat a precise amount of food each day, and that I would need to inject a precise amount of insulin to handle it. These measurements were reviewed and revised on an annual basis.

Note: Type I Diabetes means your body stops producing insulin and you have to inject it instead. Type II Diabetes (the kind you hear about on the news) means that your body still produces insulin but is unable to absorb it properly, which is why it can often be controlled through diet and tablet based medication instead of insulin injections.

When I was a little older I asked my paediatrician why it had to be this way. I wanted to know why I couldn’t work out how much food (carbohydrate) I was about to eat, measure my blood glucose, and then calculate my insulin dose based on those and other factors. After-all I reasoned, this is what my body would have done naturally, so why couldn’t I emulate that behaviour? To this day I don’t know whether he actually patted me on the head, or whether my sub-conscious has superimposed that memory based on his reply (“don’t be so ridiculous”), but it doesn’t really matter in the scheme of things.

Looking back I understand that was the moment that everything changed. It would take another 15 years for the impact of that moment to be felt, but that was where it all began. That was where the rebellion started.

At some point during my teens I discovered that I could skip an injection without anything terrible happening. It wasn’t something I did intentionally, at least not then, but it made me think I could get away with it from time to time. From then on I did just enough injections to stop anyone from figuring out what I was up to. I stopped monitoring my blood glucose levels almost entirely, and as soon as I was old enough I stopped going to see my doctor for annual checkups.

Throughout my student days I had a riot. I went to drama school where I worked hard and played harder. I smoked, danced, partied, fell in and out of love, discussed Stanislavsky and Brecht until the wee small hours, drunkenly declaimed Shakespeare, and kept on ignoring the fact I was diabetic.

By the time the century was drawing to a close I was working in the tech industry. Quite by accident I had gone to work for one of the UK’s first ISPs in early 1997. Somewhere along the way I taught myself to code and by 1999 was working as a web developer. This was the era of the .Com boom and everyone was having fun. There were pool tables in the office, Nerf guns on every desk, insane parties that the company wrote off against tax, Paul Okenfold was the soundtrack to our lives, and we’d fall out of clubs at 6am and drive to Glastonbury Tor to watch the sunrise just for the hell of it.

One morning in October 1999 I woke up with a hangover. As I looked at my reflection in the mirror I realised I could see a ribbon of blood in my line of sight. As I looked left then right, the ribbon moved sluggishly as though floating in dense liquid. Assuming it was a temporary result of the previous night’s antics, I left it a couple of days before visiting an optrician to get it checked out. When I did the optrician took one look at the backs of my eyes and referred me to the nearest eye hospital for further investigation.

When diabetes is uncontrolled for a time it causes a lot of unseen damage. It works something like this: When you eat something your blood sugar levels rise and your body produces insulin to convert that glucose into usable energy. If enough insulin isn’t available then the cells in your body are starved of energy and begin to die and the excess glucose remains trapped in your blood-stream. If that wasn’t enough, the excess glucose smothers your red blood cells and prevents them from transporting oxygen efficiently around your body.

One of the ways this damage eventually manifests itself is Diabetic Retinopathy. In an attempt to get enough oxygen to the retina at the back of your eye, your body creates new blood vessels to try and compensate. The new blood vessels are created as an emergency measure and so they’re weaker than they need to be. This means they’re prone to bursting and haemorrhaging blood into the eye – creating visible ribbons of blood like the one I could see. The lack of oxygen to your retina and the accumulation of blood in your eye has the inevitable effect of damaging your sight.

The people at the eye hospital told me I would need laser treatment. This might halt the breakdown of the blood vessels at the back of my eye and enable the remaining vessels to strengthen enough to get the oxygen where it needed to go. It seemed like a reasonable option since my sight was still reasonably good at this point.

Laser treatment isn’t pleasant. It requires an anaesthetic injection into the eye, before a laser is fired repeatedly at the blood vessels at the back. One side-effect of this is that it plays havoc with your retina. If you think of your retina like a piece of clingfilm pulled taut over the open end of a jar, then imagine how it distorts when pressure is applied to it, you won’t be far off the effect laser treatment can have. I remember one round of treatment skewing the sight in one eye around 90 degrees and making everything slightly pink for several hours. Trust me when I tell you that it’s impossible to remain upright with one eye seeing straight and the other 90 degrees out of whack!

Looking back now I realise my consultant knew that laser treatment was almost certainly a futile gesture. Despite this no-one ever came straight out and told me the consequences of having advanced Diabetic Retinopathy, it was always spoken of in terms of progressive deterioration without ever mentioning the logical conclusion of that progression.

I do remember the day I admitted it to myself though. My sight had been steadily worsening over the months and it was a day in the spring of 2000 that it happened. I have no idea what prompted it, but I was walking down the stairs at home when it hit me like the proverbial sledge hammer – I would be blind. Until that moment I had never believed people when they said an emotional reaction could be like a physical blow. I don’t doubt that anymore. With absolute certainty I knew I would lose my sight and that I only had myself to blame. I sat on a step a couple up from the bottom of the stairs and fell apart. I cried like a child. I cried for my lost sight, for all my broken dreams, for my stupidity, for all the books I would never read, for the faces I would forget, and for all the things I would never accomplish.

Having come unravelled I couldn’t pull myself together, and after a few weeks reluctantly realised I needed help. My doctor prescribed anti-depressants that effectively put me to sleep for about 23 hours out of every 24. After six weeks I decided enough was enough and took myself off the meds for good.

A curious thing had happened in the intervening weeks though. Whilst I was asleep my mind appeared to have wrapped itself around the enormity of what was happening. This wasn’t any kind of revelation, but it was a recognition of what I was up against, and that was enough for the time-being.

Over the ensuing months I gave up work as my sight continued to deteriorate, and I stayed at home and tried to keep busy. Most people look baffled when I tell them that going stir crazy was one of the hardest things to deal with about losing my sight. People who know me understand that to me boredom is a fate worse than death (or blindness as it turns out)!

There were days when I raged out of control. Days when I screamed and threw things at the people I loved just because they were there. There was the day I stumbled in the kitchen and up-ended a draining rack full of crockery that smashed into a thousand pieces around me. The days when I demolished a keyboard I could no longer use, or kicked the hell out of the hoover because the cable was so caught up around the furniture I couldn’t untangle it. Days too numerous to count when I bruised, cut, scratched or burned myself in pursuit of everyday tasks, and the rage and the tears would overwhelm me allover again.

That amount of fury isn’t a good thing. It took my relationship with the most important person in my life to the brink of collapse, but fortunately patience is one of his abiding qualities even though I tested it to the limit during those times. My friends and family went through this every bit as much as I did, only they managed it with a degree of grace, humour and affection I was incapable of recognising at the time. Now I know with absolute certainty that if it hadn’t been for their collective love and support, things would have turned out very differently for me.

Towards the end of that year, not long before Christmas, the last of my sight vanished. To think of it now, it seems that I went to bed one night aware of a slight red smudge at the farthest reaches of my vision (the standby light on the television), then woke the next morning to nothing at all. I don’t suppose it happened exactly like that, but it’s close enough.

I do remember being surprised to learn that only 3% of blind people are completely blind. Most have some degree of light perception or even a little usable vision, but I’m one of the few who can see nothing at all, and nothing is the best way to describe it. People assume it must be like closing your eyes or being in a dark room, but it’s not like that at all. It’s a complete absence of light, so it isn’t black or any other colour I can describe.

To offset what would otherwise be an incredibly boring view, my mind obligingly gives me things to look at instead. It shows me a shadowy representation of what it thinks I would see if I could – like my hands holding a cup of tea in front of me. Since my mind is constrained only by my imagination, it rather charmingly overlays everything with millions of tiny sparkles of light, that vary in brightness and intensity depending on my emotional state.

My retinas are long since gone, so no actual light makes its way to the backs of my eyes. This is what gives my eyes their peculiar look – each pupil is permenantly open to its fullest extent in an effort to take in light. Oddly this is the one thing that still makes me feel a little uncertain about being blind, but given that I no longer really remember what I look like, perhaps there will come a time when that uncertainty will fade.

With the last of my sight gone, I discovered something I hadn’t expected. Now I couldn’t see anything, things started to get a lot easier to deal with. Looking back now I realise that was because I stopped trying to look at what I was doing, and started to use my other senses.

I’ll pause at this point to clear up a common misconception – I do not have extraordinary hearing, sense of smell or any other sense. I do pay more attention to those other senses though, so although I’ll often hear a phone ringing when other people don’t, it’s only because I’m devoting more of my concentration to listening than they are.

The next few months were a time of discovery, sometimes painful, often frustrating, but also littered with good memories. I learned how to do chores, how to cook, where to find audio books, how to cross the road, what it feels like to drink too much when you can’t see straight to begin with, and many more things I’d learned once in my life before. The one thing I didn’t do was learn Braille, at least not with any dedication. I simply didn’t have the patience to go back to reading baby books, at a time when so much else was new and strange. I did learn something far more important though.

I discovered something called a screen reader. A piece of software that could be installed on my computer and which would speak on-screen content to me in a synthetic voice. It would even echo my keystrokes back to me as I typed, which was just as well because I suddenly realised I couldn’t touch-type despite having used computers on/off since the early 1980s!

I then decided to enrol on an online course with the Open University. The course was called “You, your computer and the internet”, a subject that was child’s play for someone who had been using the internet for nearly a decade. For someone who could barely use a computer with a screen reader, it was something of a practical challenge though. It took me an entire day to figure out how to log into the course environment, and for a while every new task seemed to take as long. Day by day things got easier though, and by the time I finished the course I was well on my way to regaining an important part of my life. Somewhere along the way I’d also rediscovered my love of learning, and promptly enrolled in another course. One thing led to another, and I eventually graduated with a degree in computer science in 2010.

It’s been 15 years since all this happened. Somewhere along the way I went back to work, and I now have the uncommonly good fortune to be working and collaborating with lots of smart and interesting people, many of whom I’m delighted to call friends.

I still find technology challenging sometimes, because we have yet to reach a time when things are engineered to be accessible as standard. That too is changing.

So life moved on, as life has a habit of doing, and as I celebrated my 40th birthday last year perhaps it gave me cause to reflect.

112 comments on “Losing sight”

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  1. Comment by Stomme poes

    This is a great read, thanks.

  2. Comment by Steve Lee

    Thanks so much for sharing that Léonie. I learnt so much – and not just about vision and lack there of.

    I can almost imagine that first retinal bleed as I have an excessive amount of “floaters” driving me bonkers at times (which I’m told might be fixed). But the rest!!!

    I really like you eyes but had never realised you pupils were fully dilated. (hope that isn’t too personal)

    May be you felt compelled to share now as I think I read you were about to experience another milestone? 🙂 If yes then congrats!

  3. Comment by Aurelio De Rosa

    Hi Leonie.

    Thank you very much for this post and for being so brave to share your tough experience. The post is very emotional and I can’t imagine how much you suffered during those years. I send you an heartfelt and friendly hug.

    Keep it up!

  4. Comment by Dan

    Thanks for sharing, beautifully written. x

  5. Comment by David Birdsall

    Thank you for writing this.

  6. Comment by Fred

    This is like a more extreme version of what happened to me. Got braces, full blown metal head frame, teeth became perfectly straight, had to wear a retainer at night, got bored and stopped wearing the retainer, now teeth as exactly as they were at the start.

    If I made that mistake over something as simple as wearing a retainer at night I can see how tempting it would be to avoid injections…

  7. Comment by Joe Smith

    Great Article, I will be blind in a few years,
    but this might help some people avoid
    going blind.
    Google Reversing Type Diabetes Lin and you will
    Add Lin and you will find a paper where 600 calorie /day fast
    for 10 days reversed T2D in 11 patients.
    This is a simple act to save your eyes and limbs

    Google Reversing Type

    1. Comment by Stomme poes

      Though that is type 2. Type 2 is caused more by lifestyle than anything else.
      Type 1, you can’t diet your way out of that.

  8. Comment by Stephan B. Feibish

    Thanks. Now I know I should be checked for diabetes. You’ve described what I experienced just in the past week or two.

  9. Comment by Francis Kim

    I can certainly empathise since I have a family history of diabetes… thanks for sharing, and wish you all the best.

  10. Comment by Naval Saini

    Thanks for sharing Léonie. I am going to use this story as an inspiration for myself and recount it to others who need inspiration. Thanks for making my day. If you want to visit India sometime or just want to know more about it, do write to me at my email address. ~ Naval (New Delhi, India)

  11. Comment by Michel

    Thank you for sharing. Good luck with everything.

  12. Comment by Brady

    Great Article! It was first article on Hacker News. I see you have an excellent website and I will be subscribing to you to continue learning better practices for building web accessible sites. This article was truly motivating for me to become a better advocate for web accessibility.

  13. Comment by Marcy Sutton

    Wow, I had no idea what you went through with your sight. Thank you for sharing your story, Léonie! You’re one of the most badass people I know. Happy to have gotten to know you through this whole Internet thing.

  14. Comment by Rob

    Thank you for sharing this. As a fellow type one, I often struggle with sharing my thoughts, feelings and fears around the disease. Your bravery in sharing this is incredibly appreciated.

  15. Comment by Lydia pizarrolydiajane@gmail.com

    Well written yes change in our health does have pact on our life and our family’s life Gods knows that its very hard adjusting give u props and lots.of luck in future Lydia

  16. Comment by Gerardinho

    This reading is so cool i really like it, you really put things on perspective thank you for sharing :DDDD

    1. Comment by Gerardinho

      btw your story is first place in hacking news just to let you know XDD

  17. Comment by Lewis Menelaws

    Wow. Great read. It has really inspired me to take better care of my health. I have been neglecting my type 1 diabetes and should be taking more proper care of myself.

  18. Comment by Denis Boudreau

    Thanks for sharing ad trusting us with your story, Léonie. That was a beautiful read. Hugs!

  19. Comment by Bijal

    Reminds me of a book I had recently read. An expectant mother had developed clot in her brain and only way to cure it had side effect of causing blindness. In her seventh month – witnessing the lasts of sonograms of her baby, decorating the crib with blue/pink decorations – she goes through the operation… never to see her baby’s face again.

  20. Comment by Adam

    This is a great post. Thank you for taking the time to write it. It’s a great reminder why content needs to remain as accessible as possible.

    Similar to you, I had a lively youth and went to a lot of events with loud music. As a result, my hearing is now impaired and I have loud tinnitus in one ear. I can understand just some of your feelings and I never really understand my health when I was younger. However, now I realise that my body is just a vehicle that has to obey the laws of physics, and we pay the price for that. I took up meditation, and that helps a lot. I hope you had a great birthday.

  21. Comment by Kostas Bariotis

    At first, I couldn’t even read it to the end. Thanks for sharing. Such mazing story.

  22. Comment by Mihai Preda

    How do you manage your diabetes now? Any advice for other diabetics who may have the same idea of giving up on insulin at some point? (aside from the implied “this is what happens if you do it”).

  23. Comment by Andrius

    really appreciate you sharing this. I can only (or not even) imagine what it must have felt like initially. Glad to hear you are doing much better now. Good luck with any of your future projects!

  24. Comment by Deborah Edwards-Onoro

    Wow, what a powerful story. Thank you for being brave and sharing it, Léonie.

  25. Comment by Ondřej Surý

    Thank you very much for sharing this.

  26. Comment by Curt Coleman

    Thanks for a great read. Its informative and moving. Thank you.

  27. Comment by Meg

    Hi Leonie,

    Your insight and openness are a gift. This article took me back to a tough diagnosis of my own (bipolar) and fortified my hopefulness. : )

  28. Comment by Phil Archer

    Thank you for taking the time to write this Leonie. You communicate so well it’s always a treat to hear/read you.

    1. Comment by saima

      Very inspiring, can I have your email address?

  29. Comment by Ian

    Thank you so much for sharing.

    I am in a prolonged process of losing sight, albeit currently only in one eye, and I am filled with a mixture of emotions about it.

    I am in tech and stumbled on this article on Hacker News and I am very grateful knowing that even if it gets worse and I lose all sight, there is life afterward.

  30. Comment by Ngoc Nguyen

    Hi Léonie,
    Thank you for sharing your beautiful story.

    Wish you the best!

  31. Comment by Amanda Rush

    Hi Leonie,

    thanks for sharing this, and I’m glad you’re working in accessibility. One of these days we’ll get to a point where things are accessible by default, and I’m glad you’re slogging along with the rest of us.

  32. Comment by Anna

    Thank you for sharing your story. Your candour and generousity is admirable. I was really touched by your honesty about the loss of sight. I know many people suffer in silence as society cannot handle the raw emotions of loss.
    I wonder if you would’ve shared your story ten years earlier or even five years earlier?

    It sounds like you’re in a much better place now.

  33. Comment by Olivier Nourry

    Léonie, thanks for sharing, and for the wonderful reading.
    Beyond the sheer beauty of this text, personally I read this powerful and important message: life does not end with disability. It takes a different turn, but it’s not a full stop.
    It’s a common thought, among able-bodied people, that they’d rather die than experience disability. In best cases, those people pity the persons with disabilities, applauding their “courage”, stating that they couldn’t bear going through that for themselves.
    But generally that’s not true. You don’t die of getting some form of impairment, and unless you were prone to it initially, you don’t feel like committing suicide. You cope with it, and go on with your life, only on different terms.
    I used to have this way of thinking, as a youngster. Becoming paraplegic was one of my greatest fears in life (that, and a global thermonuclear war). I knew people who needed wheelchairs, and to me it seemed like a dreadful prospect, far beyond what I could possibly bear. One day, at the age of 21, I fell off a cliff (because of my amazing carelessness – being young and healthy makes you believe that you are invincible and immortal, of course). During the 10-meter fall, I had plenty of time to realise that I might be dead in a second. But my very first reaction, after landing, was to yell “I can feel my legs!”, as if it was the best news ever, better than being actually dead.
    I have evolved from that state of mind. Ironically, later on I was diagnosed with spondylitis, which I had since birth, but it only started to bug me in my twenties. So when I fell from this cliff, I was actually on my way to being less able, some day. But that is not what made me change my mindset; it’s working and meeting with people with disabilities, thanks to my job as an accessibility consultant. I routinely meet people who live their life fully, albeit dealing with disability every single day.
    You are a living proof that life isn’t less valuable when disability occurs. You have transcended your condition, and have become one of the most highly-regarded figures in the accessibility field, at a world-wide scale. Would you have got that level of fame and respect in your professional community, should you have remained just-any-other-Web-developer? Likely not.
    The obvious mistake would be to think that you achieved this due to your being blind (like, “hey, that’s cheating, you use screen readers all the time!”); but that would be missing the point. You are there in spite of your blindness, and that is no small feat. There are many blind Web professionals out there, and very few acquire your status and recognition.
    I am not saying either that getting blind was a good thing. Losing sight sucks. Big time. None should go through what you lived (and don’t blame yourself too much for what happened. Having diabetes is unfair, and without testimonies like yours, you couldn’t really know. The physicians who did not find the appropriate words are morons). It would be absurd to count on disability to become an extraordinary person. You were an extraordinary person from the beginning. Everybody is an extraordinary person inside, they just need something to reveal it, and overcoming disability is one of those things.
    Thanks again for sharing your story, may it be a source of inspiration for everyone.

    1. Comment by Louise

      I just wanted to thank you Oliver for your response to Leonie’s post. I was diagnosed with a degenerative retinal disease in 2009 and have spent the last few years trying to manage the tumult of emotions it has stirred up. It’s so true when you say able bodied people think they would die if they suffered some form of impairment. It was this faulty thinking that led me to experience quite profound feelings of depression in the early days. I could only see misery and frustration ahead and many times I contemplated suicide. There are unfortunately too few role models out there living a ‘normal’ life to offer hope that you can go on despite your limitations and lead a fulfilling life. The visually impaired mountain climbing, downhill skiing people are admirable but they do not represent most of us living with sight loss. We are just everyday people trying to do everyday things. I live in South London and rarely meet others with sight loss in my day to day life as a full time mum to three children. In that context of limited exposure to others with sight loss, it’s easy to buy into the disablist rhetoric and start to believe you’re the only one struggling and therefore it’s somehow your failure to adjust. Before you know it you’re back in that place of isolation, believing that your impairment is in fact, the end of the world. Leonie’s story gives me hope as does yours, that eventually we will break down the barriers that exist around bodily impairment. It gives me hope that people who suffer sight loss will remain fully integrated in society at all levels and that consequently the fear of sight loss or indeed any physical impairment, will lose its power.

  34. Comment by MARVIN HUNKIN

    HI. YES, WELL. LIFE HAS ITS CHALLENGES. I HAVE RP, PART OF A WIDER SYNDROME CALLED LAURENCE MOON BEEDLE BARNETS SYNDROME. AND MY SIGHTE GRADUALLY DETERIATED. LEARNT TO READ BRAILLE WHEN I WAS 23, AND NOW HAVE BEEN USING COMPUTER WITH SCREEN READERS, OVER A DECADE. AND MY LOVE OF LEARNING NEW THINGS, AND HELPING PEOPLE OUT LIKE MY PARENTS, FRIENDS, ETC. SO, I AM SAD THAT THE ACCESS TALK PODCASTS ARE NO MORE, THEY WERE VERY INFORMATIVE. MAYBE YOU WOULD LIKE TO E-MAIL ME. PS: DOING A PROGRAMMING COURSE, AND NOW UP TO DOING MY FINAL PROJECT, A WEB BASED MOBILE SPACE INVADERS GAME, WHEN I HAD SOME EYESIGHT IN THE 80S, WHEN I USE TO DO ROLLER SKATING AND THEN PLAY THE VIDEO GAMES, LIKE ASTEROIDS, PACMAN, GALAXIAN, AND SPACE INVADERS. MARVIN.

  35. Comment by Pina D'Intino

    Dear Leonie thank you so much for your heartfelt and candipost. We have alot in common other than the cause of our total blindness. I applaud your courage and know that your story will touch and resonate with many more tna jus the 3% of us who are blind.

  36. Comment by Lu Ogbe

    Léonie, amazing as usual! Having lost my sight 10years ago, I can relate to your experiences. Thanks for sharing your inspiring story and for all your contributions to the IT industry.
    Keep the flag flying for the TOTALs, we rock!

  37. Comment by Claire Brotherton

    That was a moving read, Leonie. I know from personal experience how important it is to take care of our health. Thanks for your honest account – I hope it informs and inspires others.

  38. Comment by Sameer Latey

    An excellent article.

    While reading the article, I could empathise with your experiences because I have gone through the same ones myself. I was born blind in one eye & lost all sight in the other due to retina detachment in 2000. Before I lost my sight, I used to wear thick spectacles because of severe myopia (short-sightedness) in my good eye. Just like you, I could not have managed the transition to my current status without the support of my friends & family. And of course, a little software friend called JAWS (a screenreader).

  39. Comment by Matt King

    Léonie, thank you for sharing!

    Going blind due to uncontrollable causes is plenty hard enough. But, I can hardly imagine the added anguish of knowing it could have been different.

    You have bounced back to become one of the shining stars of the accessibility world, and for that, many of us are fabulously grateful. Working with you is a joy.

  40. Comment by Lee Jordan

    Thanks for sharing this. You’re an inspiration to me and a great educator too.

  41. Comment by Deb

    What a powerful and touching story Léonie. I was so moved by your raw and honest emotions. Thank you for sharing your incredible journey. Your inspirational story will have a lasting impression.

  42. Comment by David MacDOnald

    Thanks so much Leonie… amazing story … I’m also in this field because choices when I was younger… but life is like a GPS it seems. When we get off track, we can hit “re-calibrate” and we usually get to a good place.

  43. Comment by Georgie

    Thank you for sharing this story. I really felt for you as I read through it, but you are a very strong person for having shared it and lived through what you did.

  44. Comment by Stella

    Bellissimo. I just read it in Italian on Internazionale. Grazie!

  45. Comment by Charlotte King

    Hi having recently been diagnosed with Type 2 Diabetes I have had to go through the experience of going for all the checks including the eye test.
    Thank you for making the situation real regarding the eye issues. I guess I have been unsure how things can deteriate but your story (Which I read on the BBC news website)has made it a real issue that I need to look after. Thank you for hi lighting the seriousness of the situation and helping me to realise we are not immune to the life changing issues even when we bury our head in the sand. I hope that you can go forward and enjoy your life although in a very different way to how you imagined and that life will be kind to you in the future.

  46. Comment by Cheryl

    I followed the link from the bbc after reading your story there. I found it really interesting as im diabetic too (type 2) . Thanks for explaining all of this, I imagine that its very frustrating especially in the beginning. Thank you for sharing x

  47. Comment by Jimbo

    A few years ago I was witness to an extreme consequence of what happens to a Type1 diabetic who mixed a drink/party lifestyle with a failure to inject properly (and I do mean extreme). It’s an image I haven’t been able forget – nor do I expect to now, as my little boy was diagnosed Type1 last year.

    Thank you for sharing.

  48. Comment by sara

    Thank you for posting this. I found it via the BBC news this morning. My sister passed away aged 33 ten years ago. She died of complications from diabetes but , prior to that, went blind in very similar circumstances to you, Despite many trips to eye hospitals, this is the first clear and realistic explanation I have seen or heard. It also helps to hear a very personal perspective and you have really moved me. Thank you. I am so happy that you are living a good life and so full of regrets and sadness too.

  49. Comment by Carol clark

    Puts things in perspective! What a well written and moving story, so pleased I read it via bbc website.

  50. Comment by Jean

    Absolutely amazing lady. Such an inspiration. Wishing you all the best x

  51. Comment by Trudy

    Thanks for sharing your experience.
    I am waiting for a 1st appointment with a diabetes nurse at the age of 59. I am hoping that mine is type 2 and early changes to my life will give a better outcome.
    As a sweet comfort eater it has prompted me to take this seriously and do something about my excess weight and stop making excuses about working too late to do some exercise.
    I wish you all the best in your “new” life.

  52. Comment by Shameem

    Great read – thank you for sharing you journey and experience!

  53. Comment by Annette

    Thank you for this. You have helped me understand my father’s experience-he lost his sight for the same reason when I was a child. He was blind for 50 years but lived a happy and useful life. I wish you well.

  54. Comment by Roger Green

    Thank you for sharing the story, I’m a Type 1 and going blind is one of my biggest fears especially after recently becoming a daddy, it’s so easy to become complacent and lazy with Diabetes and modern life is tough with so much tempting bad food around. Reading your story has given me a kick up the backside to try and really look after myself over Xmas so thank you again and well done for being so strong!

    P.S Glastonbury Tor is one of my favourite places, I proposed to my wife up there 🙂

  55. Comment by Brian Reid

    Congratulations Leonie on producing such an insightful look at your condition. As someone who is undergoing treatment for the start of Diabetic Retinopathy I can relate to many of your points. However, let me issue one warning for Diabetics reading this. Your Doctor understands the concept of diabetes, they do not understand the working of individual diabetic cases. I have been diabetic for 37 of my 38 years, it runs through my family, and the best thing I worked out about diabetes is that you treat yourself. The nonsense that I have heard from so called specialists is actually mind blowing. An HBA1C of 8 isn’t high, I know the scale has now changed, but the 4-7 range was formed way back and with amendments made to the scale it has made the “ideal” HBA1C borderline Hypoglycemic. Is this adequate treatment? Things still the same 40 or 50 years later? What other illnesses show such poor development? Diabetes is such a varying illness that the only people who know the best treatment plan is the person themselves.

  56. Comment by Yashmin J

    Leonie , thanks so much for sharing your story , I was so completely moved by your honesty and really felt for you so much. Diabetes is huge in our family , generations have suffered, but for some reason you words really resonated with me and compelled me to write a quick note to say thank you . Thank you for your bravery and for reminding me to always be vigilant. Your 40s are fab , enjoy the journey .

  57. Comment by David

    How very brave you are. I have Age Related Macular Degeneration but thankfully it seems to be only slowly progressing. My hobby is amateur radio and I talk to people all over the world. You might like to consider taking it up. The Radio Society of Great Britain will help you obtain a licence. Very best wishes from Dave

  58. Comment by Dorothy Brownlie

    Hi Leonie, what a beautiful piece written from the heart. When I was fortunate enough to work with you I always admired your determination to help others in a similar position, and I am sure your story will help people make the correct decision about their health. Although I no longer work in the same field, I learned so much from you and your colleagues which will stay with me personally. Belated birthday wishes for your 40th. With great affection and admiration. Dorothy

  59. Comment by dan

    Again as a fellow T1 I can relate to my younger years of ignoring the condition to some extent. Uni was a disaster and the years that followed weren’t much better. This was at a time of quite rudimentary treatment too – one injection a day between 1987 and 2000s which probably didn’t help.
    I’ve now got background retinopathy which has caused me to focus myself a little more with a view to staving off a worsening of the condition. I guess GPs need to understand that we are all human and not all Type 1s are perfect all the time – life would be boring if we were. It’s finding a balance that I think only comes with some experimenting.
    Whether by accident or design though my HBA1C have always been relatively stable, never going above 7.5.
    This story is an inspiration though, one that I won’t forget as I wonder whether to reach for a sneaky biscuit or consider taking up smoking again.
    Thanks – I really mean that.

  60. Comment by Alex Bovey

    It was a pleasure to work with you back in UKOL days. Glad to find you are still making the web a better place.

  61. Comment by Min

    Thank you for your article, I am also a Type 1 and have had a fair amount of preventative laser treatment. Thankfully, my optician spotted the problem before it was too late. It is so easy to “forget” the diabetes and just have a good time, I don’t think non-diabetics realise how tough it really is ( oh, go on, one sweet/chocolate/slice of cake won’t hurt….). Good luck for the future and thank you for sharing your story.

  62. Comment by Sarah Chandler

    Leonie, thank you for sharing this personal insight into your experience. I am full of admiration. I feel if we all learned a bit more about others’ situations (challenges or overcoming obstacles, I mean), the world would be a more cooperative place.
    I am so glad you have found rewarding work and are in a ‘better place’. Thank you.

  63. Comment by Scott McFall

    Thank you for sharing this story. My son is 12 (13 in Feb) and he has type 1 diabetes and is having a hard time dealing with it. He doesnt do his checks and fails to do his insulin and because he doesnt see effects immediately he thinks all is ok. He still hasnt got the concept of the future and what hes doing is changing it. Reading your account is a breath of fresh air and I will be reading this to him. Thank you so much for sharing and taking the time to tell others what you have experienced. Keep well and good luck 🙂

  64. Comment by Andrew Graham

    I live with this fear every day, having had ongoing laser treatment since 2012, these sessions being every 4 months and have resulted in some loss off peripheral vision.
    It needs to be explained to diabetics and none diabetics.
    Especially to people who don’t understand the condition of being Type 1 diabetic as look at me and assume there is nothing wrong with me.

  65. Comment by Matthew Game

    I’ve been Type 1 for over 33yrs and have gone through teenage years, 20s and now in my 30s having had a really good time.

    I’ve had some background retinopathy along the way and this story really has brought it back home to ensure I keep on top of the control and work with my insulin pump to keep my HbA1c under control.

    This is certainly a timely reminder for me to behave and keep on top of good control. Thank you Leonie.

    Matt

  66. Comment by Stu

    Thank you…reading this it could be a carbon copy of what is happening to my wife. I will let her know about your recollections and hopefully will give her hope….THANK YOU!!

  67. Comment by Alasdair

    Thanks for the brave story – son, brother and father of a T1 and hope I don’t see my little girl (diagnosed at 9) rebel and refuse to own it. 3 years on it’s too early to tell her about these risks but folk need to know! Oh and if only the ignorance about the differences in T1 and T2 could end!! p.s. happy birthday!

  68. Comment by George

    This is a remarkable story – thank you for sharing it. I originally saw the article on the BBC website and it resonates with my own experience. I was diagnosed with type 1 diabetes in 1988 aged 10. During my teens I neglected my diabetes, didn’t take my insulin correctly, skipped appointments, etc. In 2001, ironically after a few years of better diabetic control, I woke one morning to discover the bottom half of my vision in my right eye was blurred. I went to the eye casualty at hospital and was diagnosed with a retinal vein occlusion, caused by poor diabetic control in my teens. I was was referred to a diabetic retinopathy specialist who found severe neovascularisation in both eyes, again caused by poor control of my diabetes. The new blood vessels themselves caused no symptoms whatsoever and it was only because of the RVO that I made the trip to hospital. The Opthalmologist was amazed I hadn’t suffered a bleed already. I was told the outlook was very poor. I had extensive laser (PRP) to both eyes over several treatments and in 2003 I was told the neovascularisation had regressed. To date my sight is good and I’ve required no further laser treatment – I recognise I’ve been extremely lucky so far. I attend the diabetic retinopathy clinic every 6 months for a check up (to that end I’m extremely grateful to the ophthalmology department at my local NHS hospital). Had I not made that trip to the eye casualty in 2001 it would have been a very different outcome. If you are reading this and have diabetes please don’t skip eye clinic appointments because diabetic retinopathy often causes no symptoms until it has significantly advanced.

  69. Comment by Steve Stretton

    I’ve just read this article on the BBC News website and wanted to drop in and say thank you for writing it.

  70. Comment by Barry

    Such a good article. Thank you.

  71. Comment by David Richards

    Thank you for telling your story. It made me burst into tears for you being so brave through what I can only see as total horror. May you have success in finding your way through the problems you encounter,friends are the essentials of life. You are a true inspiration to all of us.

  72. Comment by David

    You (like all blind people) are an inspiration to me, and I salute your courage. After reading your tale, I will NEVER miss my medication again! May your life be nothing but happy from now on. Sincerely….. you brave lady!

  73. Comment by LINA MOOKERJEE

    Hi leonie

    What a refreshing delight to read your story and thank you for being open, honest and realistic about your journey. My mum is a diabetic and I empathise with how much of a struggle the ‘whole’ control is. My husband is practically blind now and is losing his hearing too – so we are going through a tough challenging transition, he in his loss and mine as his carer, both of us grieving and moving with this new life position. I felt met and heard by what you shared, thank you – you pioneer. With kindest regards Lina

  74. Comment by sue

    so brave to acknowledge that there may have been ‘fault’ on your part – but you were a child – and then a very young person. There is no fault just a very tragic consequence that your understated story all the more emphasises and along with you, I hope it reaches and helps many thousands of Type 1 diabetics who find it difficult and frustrating to take the time to care for themselves. I love the fact that you have found love again – and your man is beautiful but you can feel that. Well done Leonie and I hope there is increased happiness and peace for you in this life. I found the story unexpectedly and it has touched me hugely. Thank you.

  75. Comment by Monica

    Thank you so much for sharing

  76. Comment by Delia

    You sharing your story could very well stop someone else from going blind.
    A lot of people go through a denial stage with type 1 Diabetes, maybe having a few admissions with diabetic ketoacidosis before they accept they have to deal with the disease. You were very unfortunate and you’re very courageous.

  77. Comment by John

    What a badass.

    This is an incredible story. Thanks for sharing it.

    I’m really glad you’ve managed to come to terms with such a shitty situation. You sound like a great person and I’ve shared this story with my classes. Cheers.

  78. Comment by Roger

    Thank you so much for sharing your story. You have been through so much and come out the other side. My 3 year old daughter was diagnosed last year. We as a family are determined that her being type 1 will not prevent her from living life, though it is a constant worry in the back of our minds. I can only hope that having courageous people like yourself raise awareness about diabetes will help as she progresses through education and beyond. All I can wish for is that she has a full and happy life.

  79. Comment by Kevin O'Malley

    Leonie

    That’s such a powerful thing you have written. Thanks for sharing it. I hope to run into you soon in Bristol.

    All the best

    Kevin

  80. Comment by Hannah

    Thank you for writing such a personal and thought-provoking piece. I think you are inspirational and I am grateful that you shared your story.

  81. Comment by Erica

    An inspiring and well informed article that I found very moving. I can only wish you well. We all get wiser as we experience life but your words helped me to learn without having the experience myself. My best wishes

  82. Comment by Den

    Thank you. Recently partially blinded at 40 and just started new job. It was difficult emotionally. But facing up to it and recently got back in the car. I have been very depressed with the sight I lost. My pupil is dialated and a bright torch cannot penetrate my retina either. This alone is scary. You are extremely brave to share your story and come to terms with your loss as it is a bereavement if sight is lost. Thank you for setting this up to inspire others. I lost sight in one eye and was devastated. You have lost sight in both and have really inspired others X

  83. Comment by Amber

    A very emotive piece and one I can relate to ! I am about to turn 40 and 8 years I gp I too was diagnosed with diabetic retinopothy.At rhe time I was told I would go blind. Scary doesn’t even come close to describing it !
    After months of laser treatment I lost sight in my left eye and went down to about 35/40% in my right eye. I am nowhere near as bad as you and yes my life has changed considerable, like you I miss reading and not being able to drive is hard, BUT I am one of the lucky ones I can still see. My heart goes out to you and you madw me cry reading this !! I can only imagine how hard it must ne to be totally bli d. You are an inspiration and incredibly brave. I hope you have come to terms with thongs and are happy. Xx

  84. Comment by Patrick

    Hi Leonie,
    I’m a T1 also, dealing with Retronopathy. ive struggled emotionally with what might happen to me with it, and having read your brave struggle with it I’m glad to hear you have accepted it and life goes on. I hope if it happens to me, I’ll be able to cope as well as you. Good luck in the future, you deserve it. X

  85. Comment by Sue Holder

    This is an excellent article – I work with a diabetic retinal screening programme. Would you be happy for us to send this article to our younger patients or those who do not realise the seriousness diabetic retinopathy?

  86. Comment by Giselle

    Thank you for your post. You have inspired me to get a grip! I’ve already been lasered once but somehow I still kept thinking I would ‘get away with it’. Your post has changed my whole thinking. Thank you.

  87. Comment by Geoff

    Leonie, this is a tough read but a very valuable one for any (type 1) diabetic – which I am. ‘Fortunately’ I was diagnosed aged 35 so could adapt to the change relatively easily. I sincerely wish you all the very best and hope your story proves to be a lesson for every diabetic – test, test test. I am told I am my GP practice’s ‘best diabetic’ (gee thanks). But that is because I test my blood a minimum of 3 times and usually 4 times every day – if you have a high reading you can deal with it straight away and hopefully avoid the complications caused by persistently high sugar levels/ blood pressure.

    Best wishes

    Geoff

  88. Comment by Mark

    Thanks for sharing. Beautifully written and informative.

  89. Comment by Matt

    Hi Leonie

    Seems like we have a similar story however I am lucky that I still have my sight at the moment, although I am constantly under review every 3 months at the eye hospital and have had approx 10 laser treatments thus far.

    I too am of a similar age (41) and was diagnosed with type 1 at the age of 10. I did exactly the same as you, and partied hard, clubbing, smoking, not looking after myself right through my late teens and early 20’s. I wouldn’t blame yourself in anyway, type 1 is a difficult thing to deal with and especially difficult to deal with as a teenager when all you want to do is be the same as everyone else and have some fun.

    Hopefully your story helps bring more awareness of type 1 diabetes which gets less of the funding pot from Government yet is the most severe form.

  90. Comment by Mike Black

    Hi Leonie, thank you very much for sharing your powerful and moving account of having diabetes and the real life devastating impact it can have. As you will be aware diabetes is now a huge problem and its potential for catastrophic outcomes is not always understood by people with diabetes, never mind those in the wider community. In Scotland we have a national diabetic retinopathy screening service that reaches out to over 300,000 patients with diabetes, however even though we work very hard at it, we still have a problem in making sure patients attend for their regular screening. We do encourage and ask patients to attend screening appointments but having real life stories like your one is much more powerful in convincing patients to come.

    I would like to ask you if we can use your story to help highlight the need for regular screening? I appreciate that your story is already in the public domain but we’d like to seek your approval first before using it in any way.

    Mike Black
    Scottish Diabetic Retinopathy Screening Coordinator

    1. Comment by Brian Reid

      Hi Mike,

      On behalf of myself and I’m sure all the Diabetics out there, I’d like to pass on my thanks to yourselves and all the Diabetic Retinopathy screening units around these Isles. It was the retinopathy screening unit from the Royal Victoria hospital who picked up on the start of Peripheral Retinopathy in my eyes at the start of September of this year and since then I have had my first course of laser treatment and go back for a second tomorrow. Without this invaluable service I too would have been heading the same way as brave Leonie.

      You do a fantastic job, and my thanks go out to you and your colleagues around the country.

  91. Comment by Chris

    Hi Leonie,

    I read this at work today and haven’t stopped thinking about it all day to be honest. I think your story has moved a lot of people, certainly I am one. I remember pretty well those years back when the 21st began.. what I was doing, where I was etc, we’re not too dissimilar in age. As I remembered those times I thought about you and your struggle. I’ve actually written and rewritten I don’t know how many paragraphs now, but I’ve deleted them, because all I’m trying to say is thanks for giving me this time for reflection and for remembering. Most of all I might follow your great example and really sort my life out 🙂

    Very best,
    Chris

  92. Comment by kate

    Thanks so much for sharing your story. I don’t see how this was your fault, you were a young person who needed support, perhaps training, education and therapy to help you cope with a life changing disease and likely (if you’re like me) this wasn’t forthcoming from the NHS.

    I got handed some injection pens and no education about carbs or anything with the expectation that I should just get on with it. In subsequent appointments I was berated and made to feel ashamed and afraid by consultants for not “controlling my disease” but I had no idea how I was supposed to adjust my insulin or what harm it might cause if I made a mistake. I didn’t feel I wanted to engage with people who were so incompetent at helping.

    It’s only due to the internet and the online forums that i have learned to control my disease and am fortunately complication free although I know this can’t last forever.

    I wish there was proper provision of care of T1s in this country. And I don’t mean ticking through stupid QOF checklists or a 10 minute appointment with an uninterested hospital doctor.

  93. Comment by Linda Law

    I found this very interesting, my husband is diabetic and has a below knee amputation and has almost lost his sight. He had laser treatment but when he went in he could read when he came out he couldn’t read at all. He finds it very frustrating and it makes life difficult. Your article is excelant and it would do a lot of people who are diabetic or borderline good to read the problems that can occur, a lot of folks think it’s something that will get better and you will recover from it……we know better. Thank you for the article and explaining it so well, I hope things go well go as well as they can for you x

  94. Comment by Christopher

    Hi Leonie,

    I have just read through your article and your ‘honesty’ will help many people going through the same thing.

    I don’t have Diabetes, but do have an eye condition called Retinopathy of the Prematurity, which has damaged my retinas. I lost my right eye in 1991 and never realised that I went through a grief process for something I could never see out of.

    More recently, I have been diagnosed with a cataract on remaining left eye. Nothing so unusual apart from the fact that my retinal tear makes removing it much more of an issue. I have been told that I could lose all my sight if complications occur. I am going to see Moorfields Eye Hospital in December to hopefully be told that they can reduce the risks to an acceptable level.

    I joke with my family about getting a Guide Dog and not having to see myself grow old, but really, I have no idea what it would actually be like and how I would cope. As with these things, I help other people with disabilities, but we are never as good at taking our own advice.

    Thank you for posting. I do appreciate the amount you felt able to say. I am sure that there is much more you could have said, but then that we be your Book!

    Thank you

    Christopher Catt

  95. Comment by Victoria Hymans

    Well done for writing down on paper what you have gone through. My husband went through exactly the same as you, went on to loose his legs, had severe heart and kidney problems, etc., all because he would not pay attention to diabetes. I am very fortunate to have wonderful sons who helped us through all the problems until he died three years ago – all because he would not help himself with a healthy regime. I wish more people would get to know exactly what diabetes can do and the harm it can do not only to the person with diabetes but the whole family.

  96. Comment by Suraj Mahajan

    Hi Leonie,
    I heard you speaking on Accessible Podcast. The podcast I heard were old and were from Iblink Radio. I kept on hunting for new podcasts not realizing that they have been stopped. I never thought that there is a section specially for Disabled people in BBC news and others. I started to get more into disability just recently and few days back came across your post in BBC news.
    This is first time ever in my 41 years coping with Glaucoma that I am coming out open. I dont have vision in right eye since the age of 6 and had about 60% vision in my left eye. I went on with life with mix of jealousy and negetive thinking because I am always with abled people and could not compete with them what so ever I try. I wanted to achieve and do what they could do.
    However, lately knowingly or otherwise I stopped competing but not trying. Nature never stopped doing its job on my eyes and I never stopped living with the feeling of frustration, jealousy and dependency. In 2010 I lost almost 90% of my only eye . As if this was not sufficient, in 2015 just a couple of months before my 41st birthday (25 Oct) I lost about 98% of my eye sight. Though I am not completely blind but the same feeling went through my mind that went through yours; not able to see my daughter’s face growing up (she is 7 now), not recognising my wife even from a distance of 2 feet, not able to go out independently and the great limitations that mother nature have put on me.
    This was the time when I really started to look at the Disability sections and found that I am not alone and there are people in much difficult position than mine who have made there life a success.
    Hats up to you and you are really an inspiration. I would like to keep in touch with you if it is ok.

    Best Wishes
    Suraj

  97. Comment by Ruairi Quinn

    Hello Leonie, I read your story on the BBC, what an interesting and articulate one it was. I am not diabetic or have any health problems to speak of… I’m still young! You sound like you have embraced what has happened to you and I admire that, I hope in the future if something like that happened to me

  98. Comment by Kirsty

    Such a life changing, huge and difficult thing to face at such a young age and indeed at any age. You were and are so brave. Thank you for sharing this with us “the public” because if it happened to you then it’s happening to other people and your story is of great importance. You are truly inspirational and I deeply admire your spirit and strength. A very well written and honest article. Thank you.

  99. Comment by Marie from Durham

    Hi Leonie, I’ve just been told today by my doctor that I’ve got type 2 diabetes …. I’m totally stunned! I thought your post was really positive and I’m going to do everything I can to keep my blood sugars controlled. Thank you for being so honest and open about your experience. We all think it’ll happen to someone else but sometimes it happens to us.

  100. Comment by Catherine Geldart

    I was diagnosed in 1962 aged 7. My parents and I had to obey the doctor’s instructions exactly without question. The clinic was every 2weeks, a random blood sugar was taken with a huge needle kept in spirit and used for every patient. We were told to do urine sugar tests before each meal which gave no indication of blood sugar measurements. I rebelled because that doctor terrified me. I refused to attend the clinic. Teenagers need to be handled very sympathetically not punished. Medical staff in those days told us nothing, even hypo symptoms were ‘sweating and shaking’ nothing more. When I developed more severe symptoms that coincided with porcine insulin I was told I had a ‘behaviour disorder’ and it wasn’t until I moved to another city that I got anything like reasonable care. I was so glad when blood glucose monitoring came in! You’re not to blame at all for trying to ignore diabetes. There’s so much baggage and blame for patients already. Medical staff still think that high or low blood sugars are a patient’s ‘fault!’ No wonder we eschew care, it’s a wonder we survive at all and that’s not from the physical effects of diabetes.

  101. Comment by Ann

    Wow, incredible story, it is so common for adolescents to reject their diabetes and rebel. I am a qualified nurse that has done voluntary work with diabetes UK camps and it is hard being a child with diabetes, eating when you don’t want to and not eating when you do! Good luck for your future, lovely picture of you and your fiancé on the article I read on facebook. 😀

  102. Comment by John Mc

    Leonie

    As a Type 2 diabetic I take your advice very seriously. Thank you for publishing this. T2DM is a desperate disease. I exercise lots every day. I will pray for you, I and all other diabetics every day. God bless us all. We need all the help he can and does give us.

    JM

  103. Comment by Rob Fentress

    Great article. Thanks for sharing your experience!

  104. Comment by Sherry

    Leonie, this is such an insightful article. Hopefully it will help others to either prevent potential blindness or on the other hand to cope with the realization that they are now blind. I lost my sight by accident in 1987 and it’s a very long road but certainly doable as you have indicated.

  105. Comment by John M

    Thanks for this weblog. I will pray for a miracle for you, Léonie Watson. I have but one good working eye and as a diabetic I asked all in our church this morning to pray for diabetics the world over. All forms of diabetes are desperate diseases. Let us hope that God gives us all the cures that we need.

  106. Comment by Brian Reid

    I hope Leonie doesn’t think I’m trying to take over this blog with yet another post, but I would like to sow seeds of hope for sufferers. I am going through a course of Laser treatment for Periphery Retinopathy. I have been diabetic for nearly 38 years (since I was 11 months) and have been getting Laser treatment at the Royal Hospital in Belfast. I found out this was initially an emergency treatment followed by treatment every 3 to 4 weeks. I have now had 6 treatments, three of which being in both eyes, the other 3 just the right eye. Since the start of this, my vision is improving slightly, but most importantly, the eyes are recovering, especially the right eye which needed so much treatment. I put this up as hope for those affected that there is so much that can be done. Also for those worrying that because they just got diabetes that this is going to happen in the next couple of years, don’t be afraid. The consultant has told me that as a diabetic, yes you are more prone to this happening, but it should still take years to fully develop. In my case an HBA1c of 10 for the past 20 years has had little bearing on the condition, simply having the condition for so long has been the defining factor.

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