National Day on Writing: A Disabled Writer’s Perspective.

I found out about the National Day on Writing quite by chance when I was Googling one day and I thought “I want to check this out!”

National Day on Writing, also known as National Journalism Day, is a day to celebrate writing in all its forms. Here’s more about the day.

Many people manage to learn to write, others don’t. Some make a living from writing and others don’t.

People didn’t know if I was going to be able to write. I didn’t have a dominant hand for a long time. Spastic Quadriplegic Cerebral Palsy has made my arms and hands, as well as the rest of my body, stiff and painful. Hydrocephalus would affect my concentration when I got headaches, which I did often. At their worst, they would have me taking lots of time off school, and my teachers would debate as to when I’d catch up on work, as well as constantly telling my parents I should be in a special ed school.

As far as I know, I learned to write when I was five or six, after many many sessions with my assistant and carer, Avis Rance. Avis is sadly no longer with us and hasn’t been for many years.

It soon became apparent that holding a pencil or pen was really tiring for me. My letters were shaky and badly formed because I was trying so hard to see things and had hand tremors. I would feel a whole-body tiredness, as well feel like my arm was about to fall off as it ached so much and I would also have a thumping headache and terrible nausea from the effort of writing. In short, this fatigue would leave me exhausted.

My Occupational Therapist at the time, Maggie Ellis (who is also not with us), did a test where she timed me trying to write. She said she could see how hard it was and asked me how I felt afterwards. I described the feelings mentioned above. She worked with me tirelessly from age 5-17. By the time I was 17, I’d tried rubber pen grips which has a hole in them to put a pen or pencil through to supposedly make gripping more comfortable and a writing slope which was a really bulky wooden slope she’d put on the table and hold paper on top of so I could practice writing in a straight line, but none of those things went well, and at least I tried.

This difficulty with writing has been with me since that day so I know it’s part of how my disabilities affect me, and this is the same fatigue I still get when trying to move anything.

When I started to write, I was still trying to get used to my body and the way it did, or didn’t move.

The number 5 was a problem for me, as I couldn’t put the line at the top well and it would end up looking like an S.

My teacher, Mrs Taylor, was the headmistress (principal) of the school. She was tall, dark-haired, strict and sceptical. She’d been sceptical of me ever since my parents tried to get me into her school, St Nicholas Infant (elementary) School in Wallingford, Oxfordshire, England, first choice as it was near home and they were advised by my doctors to see how I got on in Mainstream school. She thought I was “uneducable”.

I couldn’t trace, I couldn’t draw and writing was hard and exhausting. What solutions did the school have for me? A huge klunky old typewriter that I barely had the strength to press the keys on (that was when my brain sent the message to my eyes to find the right letter). I would spend more time staring at the typewriter rather than actually doing anything, because I couldn’t locate the letters despite my strong glasses because of my difficulties focusing my eyes. I have nystagmus (constant involuntary eye movements) and hemianopia (a type of blindness where half of both of my eyes has complete blindness and the rest has a severely reduced visual field).

I still just stare as a keyboard as I try to find the right key, but nowadays it’s trying to find the key to turn my computer on, as I can do everything else by voice.

Fortunately, Maggie introduced me to an amazing voice recognition software: Dragon Naturally Speaking, which I could use with my voice. Was my body relieved!

From the moment I dictated my first word there, my movement difficulties didn’t matter, my lack of coordination generally, especially hand-eye coordination, my tremors didn’t matter: my voice was the pen.

She told me “just speak normally, don’t speak too loud or too soft.”

The thing is that I have dysarthria, which makes my speech slow and hesitant and I often repeat myself or forget what I’m going to say. My voice will wobble, I will mispronounce words or I will run out of breath.

I trusted her, and nervously dictated my first word. It appeared on the screen. A smile appeared on my face. “I did it!” I said. I had started to drool and I swallowed, trying to get my muscles to control my mouth. The bullies said that I spat when I talked, and I was, and still am, really self-conscious as to that. Excitement and nerves meant I had more muscle spasms.

But I felt really, really proud.

Those are just some of the experiences I had when trying to find the right tools to help me write.

Have they paid off?

Yes! From the first dictated word up to now, I have dictated my university thesis, as well as numerous novels and writing exercises from online courses and challenges, and this blog.

So, do I think writing is important? Yes, I do. No matter how you can do it, with a special pen or with dictation software, if you have an imagination, you can be a writer. I’m glad I found the National Day on Writing, and from now on I’ll always celebrate this day. Writing is a craft and it is an art and it’s one I’m glad I’m so passionate about.

I have many posts related to writing on here.

What will you write today?

💚World Cerebral Palsy Awareness Day 2022💚

Today is World CP day. As I think back over the last year so far for me, it is clear that it’s not CP that brings me the most challenges, but it is society that makes them harder. We are still fighting for housing and ways to pay for prescribed equipment which is hard. I am all for more affordable housing being built but society has other plans.

For those of you who are new to my blog, here’s a bit about my Cerebral Palsy story. I was born at 29 weeks on December 22 1981 in Kingston Upon Thames, south London with my identical twin sister Natalie. We weren’t expected to survive.

We went through a complicated birth, infections, heart and lung trouble (we couldn’t breathe at all when we were born and were in a very poor condition and so we were in the NICU).

We surived the first 9 days of our lives together, until Natalie became an angel.

When I took my first unexpected breath at 2 weeks old, doctors didn’t know what to expect, for I’d been through a lot already. I was diagnosed with hydrocephalus, which is known as “water on the brain”. It’s a buildup of cerebrospinal fluid which protects the brain and spine. This builds up excessively inside the brain and skull which causes swelling and brain damage. I was diagnosed with CP around this time when the doctors saw I had difficulty moving and was very stiff.

For me, CP causes difficulties with all daily tasks and I require help from others. Find general information about CP here: https://www.scope.org.uk

I have difficulty with concentration, relaxation eating and drinking, swallowing properly, general mobility and positioning, sleeping, spatial awareness and vision as well as stamina, general coordination, grip ability and strength. I have a limited range of motion and have daily pain and spasms and seizures.

I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus and all this means my muscles are too tight all over my body as well as my trunk and face. I have a powered wheelchair for mobility and I wear strong high prescription glasses. I am registered blind. I have shunts which drain off the fluid from my brain and these surgeries left a lot of scars.

Here’s more information about hydrocephalus: https://www.shinecharity.org.uk/hydrocephalus/hydrocephalus.

I’ll talk about hydrocephalus more in my H post for my Disability A-Z series on my blog.

I have a speech problem called dysarthria which I have talked about before on here which makes my speech slower and makes me stumble over words and sometimes be hard to understand. It also makes me drool too much.

Sometimes, it’s harder to think of words and I can take time to respond. This makes people think I’m not listening when I really am. Extreme tiredness can make me go very quiet and I easily get headaches from the effort my muscles have to make to move, no matter how small the effort.

My intelligence is unaffected but I have a math-related learning disability This makes anything related to numbers difficult.

I love to blog and email and have many book drafts. I would love to be a published author someday. I am still working on that.

I use assistive technology for computer use. For me, this a voice recognition program which is built into my computer. I have used these programs since I was at primary school and they (as well as the physical help from people) helped a lot in me being able to do homework and get my degree.

I love makeup, fashion and beauty and I can speak Spanish. I am married. I did therapeutic horse riding from age 5-17 and horses, as well as cats, are my favourite animals.

This Cerebral Palsy Day, as well as every day, I want people to see they are original and unique no matter how their disability affecs them. If you have CP and have ever doubted your ability to achieve things, I want to say there are ways to study, to learn or to do adaptive sports or what you want to do. I have been discouraged and still do get discouraged, but I know I have a fighting spirit and all of us with CP do. Whatever you’re going through with your CP (and believe me, it does make life interesting!) you have my support.

Remember to keep being you despite your CP and that you should never stop spreading awareness for CP how you can. I spread awareness through my blog, and through what I do each day. Green is the CP awareness colour and I am wearing green eyeshadow every day this month. I’ll be posting tweets throughout the day, including my CP story, on my Twitter account @theglitzqueen. If you like my content, feel free to follow me there.

Although awareness in a day isn’t nearly enough, I do all I can through my blog to show my life with CP, Hydrocephalus and severe visual impairments. I’m happy to be here to be able to do that. I am more than just a person with CP and my other disabilities. I love books and writing (which I enjoy thanks to assistive technology) fashion beauty and makeup as well as movies. I’m married and speak Spanish.

I’m happy to see interest in my blog and thank each and every one of my followers for your continued support.

The green makeup look I wore today was:

Urban Decay Moondust Shadow in Lightyear from the Urban Decay Moondust Palette (2016).

W7 London Rose Mascara in Black

Shade 08 (dark green) from the Kiko Smart Lipstick Palette Shade Selection # 03.

Byphasse Face Mist with Rosewater and Camomile Extract for Sensitive and Dry Skin (used to refredh skin and fix makeup).

I finished the day off by listening to some memoirs by people with CP on Scribd.

For more information about Cerebral Palsy Day, here’s the CP Day site homepage:

Aria at Home: Winter Reads Event

I love book events. I want to invite you along to the Aria at Home: Winter Reads event taking place next week. As always it will be taking place on their Aria Facebook account live.

Join us live at 7pm on Monday 3rd October as Jules Swain chats to Mary Jayne Baker and Julie Houston about their latest books. The chat will include: Santa Maybe, A Village Secret, The 24 Hour Dating Agency and The Village Vicar. You’ll also have the opportunity to ask your own questions and enter our prize draw to win Aria books to curl up with this winter!

@jules Buddle chats to @MaryJayneBaker and @Julie Houston about their new books and which titles they are both looking forward to curling up with this winter.

They are offering 1 lucky winner the chance to win a book bundle containing some of Aria’s cosiest reads, including books from Mary Jayne Baker, Julie Houston, Kate Forster and Jenny Kane. Join the live event to be in with a chance of winning. The bundle will also include tea and chocolate.

I would love to see you there and if you can then please spread the word about the event. I have attached a poster below for you to share.

Curl up and get cosy with this Aria winter reads event…

I look forward to seeing you next Monday,

Aria Facebook Live: Aria at the Beach @AriaFiction @headofzeus

I was really pleased when I was emailed by Aria and invited to their next Aria Facebook Live, Aria at the Beach, which is taking place on Monday 20th June at 7pm.

Here are the invited authors:

Faith Hogan (author of The Ladies’ Midnight Swimming Club and forthcoming The Gin Sisters’ Promise),
Cherry Radford (author of The Spanish Garden and forthcoming The Spanish Cove)
Nancy Barone (author of Dreams of a Little Cornish Cottage and forthcoming The Husband Diet).

The event will be chaired by Emma Burstall (author of A Cornish Secret and forthcoming The House on Rockaway Beach) and will last approximately 30-45 minutes. We’ve got plenty of time for audience questions, so do get your thinking caps on.

There’s a competition too! (I love competitions so much). 5 lucky winners will win four paperbacks each (one paperback from each of our panellists’) as part of our exclusive prize draw for viewers. Details of the prize draw will be shared on Aria’s Facebook channel during the event itself, so make sure to tune in!

Our Easter Celebrations 2022

Easter day is here! These last few days, I was wondering what makeup to wear and realized I hadn’t reviewed my I Heart Makeup Surprise Egg Eyeshadow palettes, so I did that.

I decided to alternate between the Unicorn palette and the Dragon palette since Thursday. Today’s makeup look was:

The gold shade from my Dragon I Heart Makeup Surprise Egg Eyeshadow Palette which is a very pigmented shade.

Cien Volume Mascara in Black

Chanel Rouge Coco Lipstick in the shade 410, Catherine

Revolution Beauty Blushing Hearts Blush in Peachy Pink Kisses

Technic Magic Mist Illuminating Setting Spray in 24K Gold

The weather was good so we went to the park. We went to the surpermarket and I was searching for some long lasting makeup but they didn’t have it. The range is the Stay On range by Lidl which has dupes for products like L’Oreal’s Infallible foundation, their Superstay Matte Ink lipsticks or Superstay 16 Hour Powder amongst others.

Watching a movie is a tradition for me at Easter, and last night I watched Twister, a favourite of mine. Tonight, I’ll watch Brooklyn.

We ate chicken potato and vegetable stew and drank some champagne.

Happy Easter!

☘️🇮🇪 St Patrick’s Day 2022☘️🇮🇪

Searching through my blog posts, I found I haven’t talked about St Patrick’s Day on my blog since 2016 and 2018. Back in 2016, I dictated this post:

https://justkatherineblog.wordpress.com/2016/03/17/on-having-irish-blood-and-happy-st-patricks-day-2016/

I remember the course I was doing online at the time of this post, and in later years, I studied Irish Gaelic via the same website (FutureLearn). I remember I enjoyed both courses and I found Irish Gaelic fascinating but hard to learn. There were people from all over the world studying the course, and I remember some letters of the alphabet being the same as, or very similar to, Spanish pronunciation.

I am proud that I decided to try the course, and I would do so again if it’s still available.

Finding my last St Patrick’s Day posts has made me think back to the trip to Dublin and makes me want to go again (obviously at a time when the world is safer). It was great visiting Trinity College, where my grandfather studied architecture, and visiting central areas of Dublin.

2018’s post was a book review, Luck of the Irish by J.A. Ferguson.

One of the things I do on St Patrick’s Day every year is wear green eyeshadow. Today, I’m wearing Bourjois Smokey Eyes Trio in Vert Jungle. We ate some green foods (a homemade guacamole sandwich and a pear).

I am proud to be half Irish and always look forward to St Patrick’s Day.

Invitation to Aria at Home Mother’s Day Event

I felt really excited when I got an email from Aria, a publisher I have been reviewing books for a long time for now.

This is their Aria at Home event.  12pm UK Monday 25th March

Tilly Loves Books will be interviewing Bella Osborne AND Nicole Kennedy. Two brilliant authors. While Bella is a serial novelist known for The Library and now her upcoming book The GirlsEverything’s Perfect is Nicole’s debut book. We would love you to join us for this exciting 45 minute lunchtime interview. 

I have featured Bella’s book, The Library on my blog. That post is here:

https://justkatherineblog.wordpress.com/2022/01/09/the-library-by-bella-osborne-osborne_bella-aria_fiction/

I also featured her novel The Promise of Summer:

I hope to see you there!

 


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💜💜How I Spent International Women’s Day 2022💜💜

Last year, I blogged. about being a disabled woman. Find that post here: https://justkatherineblog.wordpress.com/2021/03/08/on-being-a-disabled-woman/

I signed up for Take Brave Action, a challenge by Dallas at Your Book Breakthrough. This is a free three day challenge and has quick exercises to make people think about goals for their book.

Today, I wanted to listen to a book that would be poignant and that book is Imperfect Women by Araminta Hall.

I’ll review it here as I have a NetGalley copy but in the meantime here’s the book information from Goodreads:

https://www.goodreads.com/book/show/49344863-imperfect-women.

I also wore some purple makeup.

These are the makeup products for today:

Kiko Water Shadow in shade 223, Eggplant Purple

Wet ‘n’ Wild Megalast Lipstick in shade 919B, Vamp It Up

Whatever you’re doing today, Happy International Women’s Day

Choral Artists of Carmel “Out of Love and Graciousness” 2022 Online Spring Concert

I like helping people and so when I found out about the latest concert by the Choral Artists of Carmel, I felt I wanted to spread the word about it. Spring is finally almost here and it’s time for their latest concert entitled “Out of Love and Graciousness” 2022 Online Spring Concert. It’s tomorrow at 3PM PST.

If you can’t make it, it will also be on their YouTube channel: https://www.youtube.com/channel/UCIJzZaqNOL6VX4yXrX6UFXQ

Thank you to Robin McKee Williams for organizing the concert, and to the Choral Artists of Carmel for the concert. Special thanks go to Karin for letting me know about this special event.

I feel we all need some hope and faith right now, and music is an excellent way to get that.

Enjoy the concert!

Find out more about the Choral Artists of Carmel here on their website: https://www.choralartistsofcarmel.org