Every time I go to write this post, I leave the page empty and back away. I want to say hi, I miss it here where it always feels nice and warm, with all of you. But something keeps holding me back from the words I have to say.
I’ve been reluctant about sharing my story of discovering my identity in this way, and that’s because of multiple reasons if I’m being honest.
Firstly, I’m very lucky – compared with too many others – to have my very supportive family, and therefore I keep telling myself that I shouldn’t tell my story as surely what I have to say won’t be as worth sharing in a way of helping others maybe?
Secondly, I don’t want it to be seen as anything more than a straight person’s sexuality would be and I’ve been worried that if I talk about it more than just in passing it will become so.
But, then I thought that I’d share it, because I had a gut instinct that I needed to. Also, I’m an advocate that everyone’s story holds much worth, as much as everybody does, so surely it would be wrong to continue with that?
As for the latter, I hope that it won’t as I’m thinking that it shouldn’t really do so; the story is about finding my identity as an LGBT+ member, and that is something which every LGBT+ member will hold.
I’ve spoken a lot about my love for books, I’ve even spoken here and there about how I read. For a question that I’ve been asked more times than I can count; how do I read with my sight impairments?, and a subject that I’ve wanted to fully cover for a while, it’s maybe a little strange that I never actually have.
The truth is though, I kept wondering whether I could even create an interesting-enough post for you all, my lovely readers.
Then, I thought; well it’s clearly a subject that interests people (I probably would’ve been interested before my sight loss, as it’s not just about the assumed audiobooks), it could turn out to be a useful post (at the least, I can point people to it when they ask…), and well – why shouldn’t I?
After all it’s not like I’m that harsh about interest usually, I guess it’s just because it’s such a subject that I desperately want to write really well because of all the questions that I’ve been asked about it, and that puts pressure on it.
If I let such a worry stop me then my blog would be a blank space -well it just wouldn’t exist at all – so why should this be different.
It’s like there’s this spilt between the majority of people’s belief when it comes to this subject; Blind/VI people can’t read, or we can only do so if we can use large text. Or at least, that’s what I’ve come across. And, that’s definitely not true.
Our visual impairments do not stop us from being able to read, and the latter is stark ridiculous; firstly, what about audiobooks? For something that was specifically made for the blind/VI, the ratio between questions about that and questions about how I can read is really – really – different.
I plan on writing a post – or perhaps a few – on audiobooks (and how they’re treated in today’s society) specifically at some point in the near future, however today’s post isn’t dedicated to them but all of the ways that I read and some apps that I use for reading, so I’ll leave that for now and continue with this post.
Kindle X Screen Reader.
Thus, turning a kindle book into an audiobook – kind of. This is one of my most common used ways to read, as it’s one of my favourites.
By swiping down with two fingers – from the top of the screen to the bottom whilst an iOS screen reader is on – you make the command for it to “read all”; meaning that it will read all of what is on the screen.
When you use an app such as kindle and use this to read a book, it will keep reading (if you have the page-turning setting turned on) until either you tap the screen or the book finishes – depending on which happens first.
This is my favourite way to solo-read now, it’s quick, simple, and means that the reader is always a voice that I like as it’s my screen reader which I carefully chose; which means that it doesn’t distract me from the story being read.
Because of mine and my Mum’s illnesses, we – as a family – found that we needed the Prime service; going out is far from easy and we need the quick service, and so because we have it, we get Prime Reading; a free library of kindle books which you can rent up to ten books from for an unlimited amount of time.
I commonly use this service; I find that it introduces me to authors that I may not of known about or if I had, tried their books.
This works greatly on other ebook apps, I just use kindle much more than any other. I also don’t know if any other screen readers do this (the only other ones that I’ve tried have been terrible, so I didn’t try using them on ebooks) but I’ve heard of some seemingly-brilliant ones that probably do.
With A Family Member.
This is most commonly with my Mum, but when we have time to – it’s with my sister Rhianna as well.
I love these times, I always have. I love spending time with them, so being able to do this and talk about the books – without the fear of giving away any spoilers to my Mum or Rhianna (depending on who I’m reading with) about books that they may want to read, is one of my favourite things to do.
My mum and I read every day together, it’s this sweet tradition. Obviously, depending on who is reading, they read and I listen (before i lost my sight, we’d take it in turns – which is better for weepy books…). I love the bonding that it creates. Plus, it means more books!
Audiobooks.
Before I found the kindle x screen reader trick at the beginning of last summer, this was my way of solo-reading after losing my sight. Now, not so much. However, I still love them; and do still frequently read them.
I’ve always said though; if I could still see, I just wouldn’t use them – simply a personal preference. However, I can’t and therefore love using audiobooks as it’s a way that I can read; an activity that I adore.
Audiobooks are expensive, which means without massive sales or/and free charitable services such as LibriVox and RNIB Reading Services, we simply can’t afford them; therefore I use those services, shop during those massive sales, and on EBay.
But, I do love sitting comfortably with an audiobook for a few hours to read a good book.
Book X Seeing AI.
This tends to be left more for text book style books, as those with text fully on the pages (as that takes a very long time or simply doesn’t work at all), and only when a more simple way isn’t available.
Seeing AI is an incredible and free app which helps the blind and visually impaired navigate the world around us, one of the many ways that it does that is by scanning written pages and any kind of document.
Once it’s finished downloading, you can save the text to many apps including note taking apps and Microsoft Word. Although this is a rarer occurrence, it’s still very worth referencing.
Apps That I Use To Read.
I use many apps to read, below I have linked them and explained what they do in the hope of others finding that useful.
An app which turns an Apple device into a kindle, so that you can read kindle books, magazines, newspapers, textbooks, and more. With a screen reader turned on, by swiping down with two fingers from the top of the screen to the bottom – it turns those things into an audio format; making them accessible to blind/vi people.
Price: free download with in-app purchases (with Prime, you can use the Prime Reading library – discussed above).
LibriVox works on a charity basis to open up the world of great classics through wonderful free Audiobooks. These are read by volunteers, and in the public domain. One story can have been read from many volunteers – meaning that you can choose the voice that you prefer the most.
Although they tend to be classics, there are also some that are fairly Morden (I’ve even found some Doctor Who tales…); so don’t try those titles released in the past few years, but have a good search – just acknowledge that it’s a charitable service which tends to produce those written at least a few decades ago and it’s amazing for that.
It’s such a great service for what they give, and actually it’s one of my favourites for audiobooks of this kind. LibriVox has over 50,000 free audiobooks from favourites to out-of-print classics in more than 30 languages, and anyone can ask to be a volunteer.
Users can make lists of audiobooks, which not only help that user but fellow users too. And, there is a easy-to-access and use search system. Not to mention it’s accessibility to screen-reader users (I haven’t found any inaccessible parts!)
Some have complained about it’s use of adverts, I – personally – however think that this is completely unfair for a few reasons; a) they work to give a free service which must cost them greatly, therefore rely on ads to give that b) actually it’s really not that bad and c) the adverts don’t distract from that service like pop-ups would. Trust me, this app is incredible.
Price; completely free, unless you choose to donate of your own will – something which they are beyond grateful to receive but hardly ever ask of – so much that it was hard and I had to research to find their donation page.
More commonly known for it’s unlimited amount of music and podcasts, short stories or chapters of books can be found on the Spotify service. These are commonly uploaded as podcast files but are also commonly named as short stories or chapters.
I’ve never found full books on there, but I find both the short stories and chapters of value; I love slotting short stories into the times that I can make between full ones, and chapters allow you to see whether you like a book before finding/buying the full version.
To add to their greatness, I’ve found books that I may never have found without them. So, although they can be hard to find, it’s well worth it.
Price; completely free, unless you choose to pay for premium – which we do not.
Libby works with local libraries, and you must have a library card to use. By using your library card on this app, you can access your libraries electronic and audio selection if they have chosen to join Libby (which many have).
This means that not only can you use their services without having to go to the library, but libraries can earn more profits by having more users and also more loans; meaning that more can survive – for this reason, Libby stole a piece of my heart as soon as I discovered the service.
You can not only borrow from your local library but those from all of the world, which makes even more benefits.
You can also do an array of things; download books for offline reading, turn those borrowed from the U.S.A libraries into kindle books (currently the only country), create lists, read available magazines as well as books, keep your position synced across devices, and so much more.
Price; free but only accessible with a library card.
This is an app collaborating an array of charitable services which makes books, newspapers, magazines, and more accessible and available to those with visual impairments and those with Dyslexia.
These services are those including from RNIB, NCBI, Bookshare, Vision Australia, Calibre Audio, Project Gutenberg, and EPub Books (full list on the app’s page).
You must be registered to the service that you want to use in most cases (this is so that no one can abuse the charity’s services), but you can use one or more of the services – depending upon your registration.
You can also copy text from other sources on your device and use dolphin’s reader to read the text. The app is fully accessible to screen readers, and has many other functions to.
(Price; free but you must be registered to one of the charities)
Apple’s version of Kindle. On this app though, you can easily turn pdfs – for example – into books; turning them into an accessible format, unlike the format of pdfs.
This is what I tend to use Apple Books for, although I have previously downloaded some books (some which I promise to myself that I will read this year…). Therefore, it’s often been used for coursework and probably will continue to be; then possibly for work when I reach that point, instead of hobby reading.
Again, I include it because it’s invaluable; that’s not to mention the amount of pdfs that I was sent by previous tutors because they simply didn’t understand that they weren’t an accessible format or others that simply didn’t care.
It’s completely free to use the app in this week, which means that we don’t have to pay for accessibility – which I believe should always stand.
As well as many other types of videos, there are a variety of Audiobooks on YouTube. It’s a place where sometimes, you find the book that you want; sometimes, you do not – and unlike LibriVox, that’s not dependent on age – and neither is it dependent on popularity.
I tend not to use YouTube for Audiobooks, because as well as this and the disruptive ads – you do not know the poster, and therefore can not rely on how they source being ethical. This being said, sometimes I do find myself relying on it for specific books.
Price: free with options to buy specific services such as premium and specific products such as films or documentaries.
Like I’ve previously said, audiobooks and accessible formats can be ridiculously expensive. However there are some brilliant charities and charitable services to combat that.
I truly believe that they deserve more praise than they get, they work so hard to bring those services to those in need; and I think that I may write a post specifically for them at some point.
I also read over 50 books a year, so these services and paying for services such as Prime Reading for my solo-reading make that feasible and allow us to fund it. This blog post didn’t include our trusted bookshops, so maybe I will write a post about them too.
I do miss being able to open a paperback, turn it’s pages and read it’s words; to me, there’s nothing like it – however these are the ways that I’m able to read, and it still holds so much magic.
Honestly, I’d be lost without books, and therefore I appreciate these techniques in an indescribable way. By posting this, I not only hope to answer any given questions, but help others.
Please acknowledge that I only speak on behalf of myself, and never do or claim to do differently; these are the only footsteps that I walk in, and I won’t pretend differently – therefore, this is how I read, others may read differently as we are all different.
I just wanted to make that clear. Also, before any questions come my way, I cannot use large text; magnification doesn’t work for me personally.
So I will leave this here at a whooping 2400+ words – and I was worried about whether this would fill a blog post!
If you, too, are blind/vi and read: what techniques do you use? And what are your favourites?
As a Chronically Ill person, I’ve noticed that many “dealing techniques” aren’t available to me.
I’m going to say this pretty bluntly but: a lot of my mental struggles are either caused by my Illnesses; what they do; what I’ve been through because of them; or made worse because of those things.
Therefore, it’s really quite tough that they also stop me from being able to access the techniques to help with the mental torment that they’ve and do cause.
I’ve been writing this for a long time however it’s today that I’m choosing to push past my fears about publishing and use my excitement to press the button, so here goes. I hope that you enjoy reading and join me in my journey.
Who I Am:
Hey, my name’s Tiegan-Elise and I’m 15. I was born on 22nd June 2004. I’m the youngest in a family which consists of me, my brother Nye (18), my sisters Rhianna (23), Megan (25), Mum and Dad.
Ever since I can remember I’ve had pain, I had lots of “quirks” and showed signs of some of the syndromes that I have now been diagnosed with (we were unaware that they were symptoms and thought I was just a kid with lots of “quirks”).
I’ve realised whilst creating this post with my mum just how awesome she is with finding bargains for brand new designer clothes on EBay, ETC, I knew this anyway as she has always done this (as money was/is low) but wow, she’s awesome!
When I was very young I had a speech delay, I was three when I started to talk properly however I still struggle with speech – I am very lucky though because I have a wonderful support system who help me and have taught me how to get across what I am trying to say in other ways, including using actions.
Me and my extremely loved and missed Grandad, he was one of my best friends but sadly passed away when I was five, however he had to be included in this post!
Over the years, I spent much time in the walls of hospitals as they tried to work out what was wrong and why I was having the symptoms that I was, pretty much having test after test including MRI’s, other scans and blood tests. And having got pretty use to the insides of hospitals, especially the children’s area and A&E.
I was diagnosed with Dyspraxia when I was seven and EDS (Ehlers-Danlos Syndrome) shortly after my eighth birthday.
Sadly at the time I was at a school which has now been investigated for abuse from the headteacher and several teachers, I was one of the many victims – targeted because of my illnesses and medical absences, the teachers and headteacher found to be abusive were removed from their positions and the school is now being run coincidentally by the incredible headteacher who also runs the secondary school which I’m a named pupil at now.
I count myself lucky because I was young and didn’t fully realise what was going on and some of which I did know I didn’t fully understand the full extent of how bad it was.
My parents tried to shield me from as much as they could and until it was broadcast on the news when I was quite a bit older I still didn’t know how bad it had been so I was able to have a better childhood than I maybe would if I had known.
I was obsessed with Hello Kitty so my sisters clubbed together and bought me this Easter Egg which I was very proud of and refused to eat for a while.I was very proud of my dad here, as this photo may show!
I transferred to a new primary school in January 2013 and luckily was welcomed in by other students and staff, and quickly made lots of friends.
I was enjoying my life a lot until everything came crashing down in October 2013, when I got in the car to go to school (I was having a bad pain day but I wanted desperately to go to school) and I had a sharp stabbing pain in my back, it was so sudden and painful that I screamed, then the whole of my back was in agonising pain and I couldn’t move my legs.
Despite this, I was still desperate to go to school although I didn’t last until lunch time before I was sent back home.
My mum took me to our local A&E where I had an X-Ray which showed that I have Scoliosis, then I was sent for an MRI which showed that I had Chiari Malformation (with brain stem involvement) and Syringomyelia (the syrinx went from T4-T8 and pushed on all sides of my spinal cord), I was still unable to walk.
I was rushed through to neurosurgery at another hospital as I was classed as an emergency.
In December 2013, I went to hospital for what originally was planned to be a Foramen Magnum Decompression.
However, when my (at that time) Neurosurgeon asked about what headaches I was having, they seemed to him to be pressure headaches. Therefore I instead firstly had a surgery where they placed an intracranial pressure monitor bolt into my brain, this showed that I had Hydrocephalus and on the 18th of December 2013 (which was also coincidentally my cousin’s baby’s first birthday) I had a VP shunt placed which took the excess intracranial fluid into my stomach where it then interspersed, it also decreased my syrinx by a tiny amount which allowed me to walk again.
In January 2014 I started being taught at home by hospital tutors. Over the next few months my syrinx refilled and so, in June 2014, I had the Foramen Magnum Decompression surgery. Quite a lot of things happened in the rest of 2014 and 2015. Some of which, although it has made me the person I am now, isn’t necessary for me to add in here, some of which I can’t remember much about and others are personal family or friend issues.
Both of these photos were taken in hospital shortly before surgeries however they were taken years apart.
In early 2016, after a lot of trouble with my teeth, I had an oral X-ray which showed that one of my teeth was coming down on an angle but myself, my family and orthodontic team decided to wait a year to see what it would do because of all the other medical things I had going on.
Fast forward a little to the summer (I think) through what felt like thousands of appointments, several new unexplained symptoms and more, I started to struggle with intracranial hypotension, which worsened as the months went by.
On the 14th of August, loving both the British soap Hollyoaks and editing (and after making sure that my mum was ok with it!), I created an Instagram fan account for Hollyoaks to show my love for the soap, and also have something good which I could hide behind from the bad things going on in my life. I loved it!
My hypotension continued to worsen and in November, I ended up in A&E and a day or two later I had a telemetric ICP monitor placed into the front of my brain.
Sadly we were told several pros about the machine and how they used it at the time which we only discovered after the surgery had been very misleading. less than a month later, I had a detethering surgery as I had Tethered Cord Syndrome, during the operation I was overdosed on fentanyl and afterwards, whilst I was still anaesthetised, I was left alone for 51 minutes.
When I was eventually found I had to be resuscitated and given the antidote to the overdose. Ever since then I have been visually impaired.
I found losing my vision extremely hard mentally and emotionally as well as everything else, this was made a lot harder when the hospital that carried out the operation denied that the vision symptoms were real and I was accused of making them up.
I started having strong dark thoughts that lasted a few minutes in early 2017, they became quite frequent and I told my mum about them, talking to her about them helped and they became a lot less frequent and then rare.
Throughout the year many things happened and nearer the end of the year, the dark thoughts came back more often and stronger but because of other emotions that I was feeling at that time I didn’t tell anyone for months, during which time they developed until they became constant and strong, before I finally broke down to my mum who really helped me in many ways.
In March 2018, I finally had an operation where they exposed the tooth which was coming down on an angle and placed a gold chain in the hope that with a brace it would pull the tooth down into the right place, this was a very complicated process as the tooth which was previously taken out had been the wrong tooth and the tooth which needed to be taken out hadn’t been so I had to have a palate brace with retainers before train track braces could be placed.
Throughout the following month, my health deteriorated in many ways including the hypotension deteriorating so much that I could no longer sit up without a very intensive and severe headache and within a matter of minutes passing out, no longer receiving the signals from my bladder and more. The year was really quite tough with my health issues and family things, but there were amazing moments too, including being given a tortoise whom I called Teddy Crwban for my birthday, finding out that my sister Megan was pregnant (shortly before my birthday), visiting the Hollyoaks set (a huge thank you to everyone who organised it and for being so amazing and kind with me having to keep lying down) and starting my personal blog on Instagram.
Oh how much I love her.
Around November I went to a new psychologist who said that she was pretty sure that I had PTSD alongside low mood but would have to properly assess me. Because she worked at the same hospital where do much has gone wrong and which is a big trigger for me, she thought that it would be better for me to have a transfer to another service, where I am having therapy for PTSD, Depression and Anxiety among other things.
In early 2019, many things happened including my extremely loved first niece Alora being born, being diagnosed with my “umbrella condition” Set D1A Syndrome, having train-track braces placed onto my first four teeth – which will be accompanied by the rest of a complete set later on because when they were placed there were complications which meant that my orthodontist couldn’t continue and having my VP Shunt surgically tied off which increased my ICP enough for me to be able to sit and be upright without pressure symptoms. Since the operation I have been unable to lay without five/six pillows propping me up because otherwise I have severe high pressure symptoms and my back pain increased by severe amounts among other things but that doesn’t mean that I’m not grateful that I’m not in the same situation as I was in before the surgery.
In August I was finally certified as visually impaired, after being eventually transferred to a different hospital (which had no reason to cover up what had happened) when we won a long battle to be. This meant that I could finally start receiving the help I desperately needed and continue to need, it will be a long road and although I still hope with all my might for my old vision to return, I’m so grateful that I am finally getting this help.
There have been many tests including procedures, scans, and more in the last few months to try to receive some answers on why I can’t lay down, why there has been a very high increase of pain, and more without clear unconfusing answers. I’ve been put on several more medications with the knowledge that doses will increase if I’m not allergic (which I frequently am) and they will be accompanied by more medications soon. I’ve been on trials including an Accupunture course which was hoped to improve my non-existant bladder signals but sadly didn’t work and now there will be discussions about catheterisation in the next appointment with my urologist and I’ve been on waiting lists for surgery (which may be happening in March) but despite how anxious, sad and low all of this makes me feel, I will remain positive because I have to continue, continue living, continue fighting not only for me and my future but for those around me and it’s a lot easier to do that with a positive mindset.
Why I’m here:
Now that you know a short summary of my life and hopefully more about me than you knew before, I will tell you what I am planning to post on here, basically everything in or about my life, from my favourites to my ten top tips (which will be about a range of topics that I have picked up tips for over the years, days, weeks of my life, recommendations, medical bits, updates, hopefully some positivity and so much more.
How stunning is the scent of fresh flowers?
I really hope that you have enjoyed reading this post. I’d love it if you joined me in my journey and followed this blog, I’d also love to find out more about you, so please comment something or some things about yourself.
Bye for now, I hope to see you again soon! Lots of Love, Tiegan Elise x
Tig Ellis - The Zebra With Rainbow Stripes 