Happy Spina Bifida and Hydrocephalus Awareness Week 2021

This week is Hydrocephalus and Spina Bifida Awareness Week. The last time I blogged about it was in 2018.

If you don’t know my hydrocephalus story yet, find it here: https://justkatherineblog.wordpress.com/2015/10/22/my-story-growing-up-with-hydrocephalus/

This week, I will be wearing yellow as it’s the awareness colour for hydrocephalus. I have yellow eyeshadow. Please help to do whatever you can to raise awareness for hydrocephalus.

I’m particularly grateful to Shine Charity (formerly ASBAH) who helped me through some hard times and were always there to listen and advise.

The things I have done to help raise more awareness for hydrocephalus have been to blog about it now and then on my blog. I have shared my story and advised families on Facebook and I’m always ready to share what it’s like to be me with not just hydrocephalus but also Cerebral Palsy and 4 visual impairments.

I give thanks for each and every day I don’t have hydrocephalus symptoms and that my shunt is working.

Pregnancy and Infant Loss Awareness Day 2021: My Story

Today is Pregnancy and Infant Loss awareness day and it’s the first time I’ve blogged about it. I’m surprised about this because I have talked about many aspects of my life here. I’m not a mother myself yet and have been told by medical professionals that could be possible with specialist care and lots and lots of physical support but do have my own story about infant loss.

On 22 December 1981 at Kingston Hospital in the South London borough of Kingston upon Thames, England. I entered the world with my identical twin sister Natalie.

From that moment, our fight to stay in the world began. We were moved to another hospital hours after being born.

We had numerous complications from premature birth and our lives were in constant danger of being lost. We fought for survival together for nine days until Natalie passed away.

I continued my fight alone, and came home.

Life with my disabilities is full of challenges and all through my life I asked myself what made me survive. I believe Natalie had some part in the fact I am here today and she passed her strength to me. She lives through me.

Everything I have done in life, every special occasion, I’d wish she was there with me. I felt like she was. When I have doubted things, been scared or happy I knew she was protecting me.

I would have loved for her to survive and for us to have experienced many of the “this could only happen to an identical twin” moments that other twins I’ve known have experienced.

What would we have gone through? I’ll never know and can only speculate but I do know those 9 days with Natalie were a gift to me although I have no memory of them.

The time between our birthday and her death will always be difficult for me but for me on a personal level and also because of the time of year it is.

My family never stopped celebrating our birthday because of grief and painful memories when I was young and while I lived with them and now I’m married, I still celebrate it, Christmas and New Year. It’s a time of hope and new beginnings, too.

It’s a gift to know Natalie was in the world.

What happened to Natalie has taught me that from tragedy, other things can happen and if we hadn’t have been born together I wouldn’t be here.

Even though I never knew Natalie, I have loved her my whole life and will never stop loving her. She gained her angel wings in 1981 but to me she is always here.

Although Infant Loss Awareness Day is a sad one, it’s also a time to feel happy about those who were in the world for even a short time, as every life is a blessing.

If you have experience of infant loss, my thoughts are with you today and always.

Happy International Physiotherapy/ Physical Therapy Day

While listening to the radio today, I found out that today is International Physiotherapy (or Physical Therapy if you’re from the US) Day.

The Oxford Advanced Learner’s Dictionary defines physiotherapy as the treatment of disease, injury or weakness in the joints or muscles by exercises, massage and the use of light and heat.

As a person with Cerebral Palsy and Hydrocephalus, I grew up with doctors recommending this to help me with my strength, stamina range of movement and high muscle tone.

As a baby, I had physiotherapy sessions at home and then as I grew the sessions were at school or a Paediatric Assessment Center. I was taken to therapy in the therapy pool and my earliest sessions were that therapy and exercises focused on head control.

My other therapies were eye patching therapy to help strengthen my eye muscles and help me turn my eyes outwards as I had crossed eyes as a baby and was diagnosed with bilateral sixth nerve palsies which mean that the abducens nerve, the cranial nerve in charge of turning my eyes outwards, is paralysed. I have tunnel vision and no lateral vision because of this. I also have bilateral squint, (strabismus), nystagmus (uncontrolled involuntary eye movements) astigmatism and hemianopia (blindness in half of both eyes with a severely reduced visual field for remaining vision).

No therapies will help these eyesight difficulties since they are all caused by the damage to my occipital lobe (the vision area of my brain).

I had physiotherapy in the form of stretches for my movement. limitations.

In terms of my hydrocephalus, the therapy and advice took the form of recommendations for head and neck positioning when sleeping, since my symptoms of shunt blockage or malfunction were a very bad headache after having been asleep for a few hours and as a child I would typically wake with nausea, vomiting dizziness and disorientation at any time between midnight and 2AM which my doctors told my parents was a classic symptom of raised intracranial pressure. I would otherwise be sleepy and not very responsive.

I was diagnosed with hydrocephalus when I was two weeks old after grade 4 (severe bilateral brain bleeds).

I was born at 29 weeks, one of identical twins.

My Cerebral Palsy diagnosis came soon after and doctors and therapists focused my therapies on my whole body since I have spastic quadriplegia which affects my arms, legs and trunk as well as causes weak muscles on the left side of my face and some difficulty with swallowing pills and with eating different textures of food as well as the need for an adapted spoon, plate and cup.

My balance, strength stamina and coordination are also affected. I have subluxated (half dislocated) hips and I have scoliosis (a curved spine), kyphosis (a hunched posture) and lordosis (a larger inwards curve on my lumbar spine than is normal). My hips have a rotational deformity and this affects the position of my knees and feet. I have high foot arches which are a foot deformity associated with Cerebral Palsy and my feet turn inwards. My ankles are very tight and I can’t move my toes.

When I was diagnosed with my disabilities, most people who saw me talked about spastic quadriplegia as my diagnosis and some talked about mixed CP because of the balance and coordination issues (which are usually part of ataxic CP). Dystonia was also mentioned as I have involuntary movements.

My experience of physiotherapy is that I was always nervous about the sessions as I knew the stretches would be painful for me because I can’t relax my muscles by myself. I also knew that telling people I didn’t want to do my therapy would not help me, so I went to my sessions.

When I was five years old, therapeutic riding therapy was prescribed by my doctor and I went to two specialist riding schools between the ages of 5 and 17 for which there were long lists. These were part of the Riding for the Disabled Association (RDA) which is a UK organisation that helps to bring together a network of specialist horse riding schools so that children and adults with disabilities can learn to ride and learn about horse care. There are people to physically help the riders too. I have fond memories of this therapy and horses are still my favourite animals.

As an adult, I have had massage therapy and we have an infra red lamp which we use for pain relief and relaxation. This really does relax me and makes me sleepy. Other heat therapy I have is using a hot water bottle in bed in winter or placed near my feet to help my circulation.

I have therapy bands although I am unable to stretch them myself as well as a soft ball to hold in my hand and try to squeeze (I haven’t quite mastered squeezing yet).

I have had a lot of different kinds of physiotherapy in my life and am fortunate that my husband is able to keep doing that with me. The stretches will be necessary for the rest of my life.

I was encouraged to find activities I enjoy and I would encourage anyone to do the same. I love being in the pool. I have fond memories of my horse riding days.

Any kind of exercise tires me out but that’s just the way my body reacts.

It’s not unusual for me to have pain, muscle spasms and involuntary movements during exercise or afterwards and I can even be sleepy.

I have slept for hours in the past after therapy sessions at my local hospital. In my experience, sleep is healing, too and a good compliment to exercise.

Blog Tour: Patience by Victoria Scott @AuthorVScott @Aria_Fiction

I posted a review of this back in April this year after I’d finished it as I couldn’t wait to start it after getting the ARC from Aria & Aries. I am thrilled to be kicking off the blog tour today for this wonderful book so I am reposting my review.

My Review:

Patience is many things: a HUGE fan of Take That, a person with long blonde hair that many people envy. She’s direct, funny observant and a sister and daughter.

Patience also has Rett Syndrome. She is dependent on carers and family in every aspect of her life. Unable to communicate verbally, she gets her feelings, wants and needs across.

Patience by Victoria Scott goes deep into the lives of Patience and her family and carers. She lives in a residential care home with others with disabilities.

As a person with Cerebral Palsy and Hydrocephalus who, like Patience, requires care and support in every aspect of my life, I was immediately able to identify with her. I cannot give an opinion on life in a care home, but can about the difficulties and challenges with finding care, support and services that meet my needs.

I identified with, and was glad that, author Victoria Scott included people with a variety of disabilities (Cerebral Palsy included) in the plot as this had me saying “yes, that’s me!” and the succinct description was spot-on with the specific needs it mentioned.

Patience’s parents are fighters, and there’s a very real conflict between them about her needs and their ability to provide the best they can for her. She is at the forefront of their lives, as is her sister Eliza.

There’s no jealousy or conflict between the sisters though, and they have a very good relationship which is tender and beautiful. One moment in particular is very raw when Eliza goes to Patience late at night.

Eliza has her own struggles, with life and love so it was great to see her “slice of life” too.

Their dad, Pete, was largely absent through work as he works in Qatar for the higher salary and his journey to get any type of job, even in construction, to help his family is really humbling. I longed for the moments when he came back. Even in absence, he’s thinking of his family.

There are some real conflicts though between him and his wife due to the circumstances of their life.

What would you do if you had the chance to work with the doctor who wanted to do a medical trial that could improve the lives of many children and adults with Rett Syndrome? Patience’s mum jumps at the chance but this creates conflict with her husband.

Her determination is heartwarming in a heartbreaking yet hopeful situation. Their pre-diagnosis journey was breathtaking and really made me stop and think. The place that had in the story was perfectly thought out.

There are parts that made me smile and others that made me identify so much with Patience’s life. The mix of frustration, worry happiness and big dreams.

Patience is a heartwarming, raw emotional amazing portrait of a life some families could not have imagined, but that they embrace.

Patience and her family are people I just wanted to hug and who I would love to actually meet.

I have not come across many novels about life with disabilities, and they are something I have felt sorely lacking in the book market since I was young.

Patience is a real unforgettable treasure of a novel and I loved every page. Those who don’t have insight into what it is to have complex needs and use a wheelchair like Patience and like me and so many others with disabilities soon will after finishing this.

I already knew about Rett Syndrome before I found this book but I found myself on YouTube wanting to know more. It’s a very current novel as the medical trials are a real thing and that made it even more powerful for me.

Thanks to Victoria Scott and Aria for my ARC in exchange for an honest and voluntary review.

5 sparkling stars.

One of, if not my favourite books of the year. I congratulate Victoria Scott hugely for writing a novel that is so immersive and real about disability and the fears, hopes and struggles that those of us who have severe disabilities face. I hope it goes a long way in the never-ending fight to change societal attitudes.

Patience is a novel everyone should read. It’s raw and emotional, but also an enlightening pick-me-up.

If you, or someone you know has disabilities and has ever felt alone, you are not with this book.

It’s like a huge comforting hug that says “welcome to my world and I understand you.”

I would LOVE this to be made into a film, I think it would be amazing. The book has also left me rooting for the trials for Rett Syndrome, but it also brings home the importance of accepting people just as they are.

There are so many life lessons in this novel, and I felt as if I were living the family’s experience.

If I could recommend a novel to the people who made my life difficult as they did not understand what I live through, Patience would definitely be it. Even though I don’t have Rett Syndrome, my challenges are similar to Patience’s in terms of mobility and care.

The novel makes me feel extra happy for what I can do, even thought it’s in a different way to others.

I think it will spark debate about care facilities and the role of family in care as well as shedding light on what people really live through.

Patience is not one to be pitied and I will never forget the day I discovered her and this book.

Harlequin Dreamer Blog Tour: In the Key of Family by Makenna Lee @MakennaLeeBooks

In the Key of Family by Makenna Lee is available on May 25.

About the Book:


Big-city free spirit meets small-town cop. And a symphony begins…

A homestay in Oak Hollow is Alexandra Roth’s final excursion before settling in to her big-city career. Officer Luke Walker, her not-so-welcoming host, isn’t sure about the “crunchy” music therapist. Yet his recently orphaned nephew with autism instantly grooves to the beat of Alex’s drum. Together, this trio really strikes a chord. But is love enough to keep Alex from returning to her solo act?

Add In the Key of Family to your Goodreads!

Buy here:


Harlequin.com: https://www.harlequin.com/shop/books/9781335404930_in-the-key-of-family.html
Amazon: https://www.amazon.com/Key-Family-Home-Hollow-Book-ebook/dp/B08NYTLMDF
Barnes & Noble: https://www.barnesandnoble.com/w/in-the-key-of-family-makenna-lee/1138339721
Apple Books: https://books.apple.com/mt/book/in-the-key-of-family/id1541463571
Google Play: https://play.google.com/store/books/details/Makenna_Lee_In_the_Key_of_Family?id=ja0KEAAAQBAJ
Kobo: https://www.kobo.com/ca/en/ebook/in-the-key-of-family

About the Author:


Makenna Lee is an award-winning romance author living in the Texas Hill Country with her real-life hero and their two children. Her oldest son has Down syndrome and taught her to appreciate the little things, and he inspired one of her novels. As a child, she played in the woods, looked for fairies under toadstools, and daydreamed. Her writing journey began when she mentioned all her story ideas, and her husband asked why she wasn’t writing them down. The next day she bought a laptop, started her first book, and knew she’d found her passion. Now, Makenna is often drinking coffee while writing, reading, or plotting a new story. Her wish is to write books that touch your heart, making you feel, think, and dream. She enjoys renaissance festivals, nature photography, studying herbal medicine, and usually listens to Celtic music while writing. She writes for Harlequin and Entangled Publishing and believes everyone deserves a happy ending.

Contact Makenna:


Website: https://makennalee.com/
Facebook: https://www.facebook.com/MakennaLeeAuthor
Twitter: https://twitter.com/MakennaLeeBooks
Instagram: https://www.instagram.com/makennaleewriter/
Goodreads: https://www.goodreads.com/author/show/18822880.Makenna_Lee

Excerpt

Alexandra Roth stumbled back when the Acorn Café door fired open, and a tall cowboy rushed out with a large bag of ice over one shoulder and a twelve-pack of beer under the other. He sidestepped just in time to avoid sending her sprawling onto the hot sidewalk, and his obsidian eyes sprang wide.
“Pardon me, ma’am. So sorry.”
“It’s…okay.” She barely managed to squeak the words out past her surprise and a flare of attraction.
Were all the Oak Hollow residents this polite? And this smoking hot? She adjusted the guitar case over one shoulder, pulled out her cell phone and snapped a photo of him walking away. The historic town square created the perfect backdrop to frame his powerful form. Tight maroon T-shirt over bulging muscles, worn jeans, hat, boots and enough swagger to get a girl’s motor revving. A genuine cowboy in the flesh. Not something she often saw back home in Manhattan.
He paused, and she thought she’d been caught taking his picture, but after a few beats he continued across the street to a black truck. Attempting to look nonchalant, she leaned her large rolling suitcase against a post and sat on top. Her movie-star sunglasses were the perfect concealment for stealthy observation. The cowboy handled his purchases like they weighed nothing, but his flexing muscles told a different story as he put them on the tailgate and leaned in to drag over a cooler. Ice cascaded and chimed like musical notes over the glass bottles.
Alex didn’t want to take her eyes off him long enough to dig out her sketch pad, so she’d have to use her memory and the one photo to paint his image. A hot breeze fluttered her billowy sleeves, and she wished for some of his ice to cool her heated skin. Beer wasn’t her drink of choice, but putting a cold amber bottle to her lips sounded pretty good about now. Maybe she’d run into him again, and they could share a drink, or a meal, or…
The star of her developing fantasy slammed his tailgate. His eyes were hidden in the shade of his cowboy hat, but the wide grin he shot her way was as clear as Waterford Crystal, and she knew she’d been caught staring. Rather than looking away in embarrassment, she returned his smile. He gripped the brim of his hat in a sort of cowboy salute, then climbed into the cab and started the engine. It wasn’t the first time she’d been caught observing someone whose likeness she wished to capture with paint.
Once he’d driven down Main Street, Alex studied the covert photo on her phone, only feeling a smidge guilty about taking it without permission. But you couldn’t see his face, which was unfortunate because it had been a really nice face—all angles and strong lines, tan skin and a bit of dark, sexy stubble. It would be the first watercolor painting she’d work on once she got settled. If she didn’t melt in this oppressive Texas summer heat. She gathered her long mass of auburn hair, twisted it into a messy bun and secured it with two paintbrushes from the front pocket of her guitar case.

The Island by Mary Grand @authormaryg @rararesources

About the Book:


The Island – where everyone knows everyone, and secrets are impossible to keep…
‘Be careful, you don’t know them as well as you think. Remember – anyone can kill.’
Juliet has returned to the Isle of Wight from years abroad to visit her sick father and to be reunited with her three sisters – Cassie, a professional musician who seems to have lost her way in life, Mira, who is profoundly deaf, is married to the local vicar but their relationship is falling apart, and Rosalind, glamorous and charming but now deeply unhappy and secretive about her life. 
As Juliet’s father lies dying, he issues her with a warning. There is a killer on the loose, and they may be closer than she can ever imagine. He anxiously tells Juliet that he confided a family secret in son-in-law Rhys, and now regrets ever saying a word.
Days later, as the clock strikes one in the morning, a man comes out of Rhys’s church, walks along the path and is run down by a car driven by an unidentified person. When the finger of suspicion points to Juliet, she realises the only way to clear her name is to uncover the secrets her family has been keeping from her for years. But with a killer on the loose, danger is getting closer all the time…
The Island  is set on the Isle of Wight – insular,  claustrophobic, and where secrets are hard to keep. Mary Grand’s heart-stopping who-dunnits are perfect for fans of Louise Candlish. Agatha Christie and Lucy Foley.

Where to Buy: https://amzn.to/2OJXBwQ

About the Author:


Mary Grand is the author of five novels and writes gripping, page-turning suspense, with a dark and often murderous underside. She grew up in Wales, was for many years a teacher of deaf children and now lives on the Isle of Wight where her new novel, The House Party, which was published by Boldwood in August 2020, is set.

Contact Mary:


Facebook: https://www.facebook.com/authormarygrand
Twitter: https://twitter.com/authormaryg
Instagram: https://www.instagram.com/maryandpepper/
Newsletter Sign Up Link: https://bit.ly/MaryGrandNewsletter
Bookbub profile: https://www.bookbub.com/authors/mary-grand

My Review:

The Island is my second novel by Mary Grand, the last one was The House Party which I loved. I went into The Island expecting great things, and that’s what I got. Mary Grand is such a brilliant suspenseful thriller author and I was lured into the plot about three sisters: Cassie, Mira and Rosalind who have very different lives.

Juliet has been abroad for years and her father is sick. There’s a killer on the loose, he says.

Then, after a sudden murder for which Juliet is blamed, a hunt for the culprit begins. Could Juliet really kill? Or was it one of her sisters, each of who has problems of her own?

I love how Mary Grand uses the setting of the Isle of Wight as she makes it at once welcoming then sinister and scary. I had shivers running down my spine and was hooked on the plot.

What I enjoyed about the characters was that each sister was very realistically portrayed. Cassie is a musician, Mira is married to the vicar but their marriage is on the rocks.

I was pleased, as a fellow person with disabilities, that Mary Grand has created Mira, who is profoundly deaf. I think there aren’t enough books with characters with disabilities in them and I am an advocate for any book that portrays disability well.. I found my awareness and understanding of living with deafness improved through this book too.

Rosalind is glamorous but unhappy.

The setting, plot and pace of writing combined to make this novel a hit in my opinion, and I can’t wait to review more Mary Grand novels. She is now one of my favourite authors for thrillers.

The Island is utterly compelling. Highly recommended.

Thanks to Mary Grand, Boldwood Books and Rachel’s Random Resources for my ARC in exchange for an honest and voluntary review.

5 stars.

Patience by Victoria Scott @AuthorVScott @Aria_Fiction

About the Book:

If you were offered a chance to cure your child’s disease, would you take it? The Willow family have been through a lot together. Louise has devoted her life to her family and raising her disabled daughter, Patience. Pete now works abroad, determined to provide more, even if it means seeing less of those he loves. And Eliza, in the shadow of her sister, has a ‘perfect’ life in London, striving to live up to her mother’s high standards.
Meanwhile, Patience lives her life quietly, watching and judging the world while she’s trapped in her own body. She laughs, she cries, she knows what she wants, but she can’t ever communicate this to those who make the decisions for her. Patience only wants a voice, but this is impossible.

When the opportunity to put Patience into a new gene therapy trial to cure her Rett syndrome becomes available, opinions are divided. The stakes are high, and the Willow family face an almost impossible dilemma.
And what is a ‘normal life,’ anyway? Is Patience about to find out…?

About the Author:

Victoria Scott has been a journalist for almost two decades, working for a wide variety of outlets including the BBC, Al Jazeera, Time Out, Doha News and the and the Telegraph. Alongside her love of telling real-life stories, she has also always written fiction, penning plays, stories and poems ever since she first worked out how to use her parents’ electric typewriter.

Victoria is a Faber Academy graduate. She has a degree in English from King’s College, London and a Postgraduate Diploma in Broadcast Journalism from City University, London. She lives near London with her husband and two children, and works as a freelance journalist, media trainer and journalism tutor.

My Review:

Patience is many things: a HUGE fan of Take That, a person with long blonde hair that many people envy. She’s direct, funny observant and a sister and daughter.

Patience also has Rett Syndrome. She is dependent on carers and family in every aspect of her life. Unable to communicate verbally, she gets her feelings, wants and needs across.

Patience by Victoria Scott goes deep into the lives of Patience and her family and carers. She lives in a residential care home with others with disabilities.

As a person with Cerebral Palsy and Hydrocephalus who, like Patience, requires care and support in every aspect of my life, I was immediately able to identify with her. I cannot give an opinion on life in a care home, but can about the difficulties and challenges with finding care, support and services that meet my needs.

I identified with, and was glad that, author Victoria Scott included people with a variety of disabilities (Cerebral Palsy included) in the plot as this had me saying “yes, that’s me!” and the succinct description was spot-on with the specific needs it mentioned.

Patience’s parents are fighters, and there’s a very real conflict between them about her needs and their ability to provide the best they can for her. She is at the forefront of their lives, as is her sister Eliza.

There’s no jealousy or conflict between the sisters though, and they have a very good relationship which is tender and beautiful. One moment in particular is very raw when Eliza goes to Patience late at night.

Eliza has her own struggles, with life and love so it was great to see her “slice of life” too.

Their dad, Pete, was largely absent through work as he works in Qatar for the higher salary and his journey to get any type of job, even in construction, to help his family is really humbling. I longed for the moments when he came back. Even in absence, he’s thinking of his family.

There are some real conflicts though between him and his wife due to the circumstances of their life.

What would you do if you had the chance to work with the doctor who wanted to do a medical trial that could improve the lives of many children and adults with Rett Syndrome? Patience’s mum jumps at the chance but this creates conflict with her husband.

Her determination is heartwarming in a heartbreaking yet hopeful situation. Their pre-diagnosis journey was breathtaking and really made me stop and think. The place that had in the story was perfectly thought out.

There are parts that made me smile and others that made me identify so much with Patience’s life. The mix of frustration, worry happiness and big dreams.

Patience is a heartwarming, raw emotional amazing portrait of a life some families could not have imagined, but that they embrace.

Patience and her family are people I just wanted to hug and who I would love to actually meet.

I have not come across many novels about life with disabilities, and they are something I have felt sorely lacking in the book market since I was young.

Patience is a real unforgettable treasure of a novel and I loved every page. Those who don’t have insight into what it is to have complex needs and use a wheelchair like Patience and like me and so many others with disabilities soon will after finishing this.

I already knew about Rett Syndrome before I found this book but I found myself on YouTube wanting to know more. It’s a very current novel as the medical trials are a real thing and that made it even more powerful for me.

Thanks to Victoria Scott and Aria for my ARC in exchange for an honest and voluntary review.

5 sparkling stars.

One of, if not my favourite books of the year. I congratulate Victoria Scott hugely for writing a novel that is so immersive and real about disability and the fears, hopes and struggles that those of us who have severe disabilities face. I hope it goes a long way in the never-ending fight to change societal attitudes.

Patience is a novel everyone should read. It’s raw and emotional, but also an enlightening pick-me-up.

If you, or someone you know has disabilities and has ever felt alone, you are not with this book.

It’s like a huge comforting hug that says “welcome to my world and I understand you.”

I would LOVE this to be made into a film, I think it would be amazing. The book has also left me rooting for the trials for Rett Syndrome, but it also brings home the importance of accepting people just as they are.

There are so many life lessons in this novel, and I felt as if I were living the family’s experience.

If I could recommend a novel to the people who made my life difficult as they did not understand what I live through, Patience would definitely be it. Even though I don’t have Rett Syndrome, my challenges are similar to Patience’s in terms of mobility and care.

The novel makes me feel extra happy for what I can do, even thought it’s in a different way to others.

I think it will spark debate about care facilities and the role of family in care as well as shedding light on what people really live through.

Patience is not one to be pitied and I will never forget the day I discovered her and this book.


Buy the book here:

https://www.amazon.co.uk/Patience-Victoria-Scott-ebook/dp/B08LP5QDY3/ref=sr_1_12?dchild=1&keywords=Patience&qid=1619361502&s=books&sr=1-12

Silence is a Sense by Layla AlAmmar #silenceisasense @algonquinbooks @Laylaalammar_author @AlgonquinBooks and @Layla_AlAmmar

Advanced Praise for Silence is a Sense

MOST ANTICIPATED LISTS:

The Millions: “Most Anticipated: The Great First-Half 2021 Book Preview”
Electric Lit: “43 Books by Women of Color to Read in 2021”
Palm Beach Daily News: “Enter the New Year With These Books On Your List”

PRAISE:

“A fierce novel. The prose is ferocious, the pace is ferocious and the beguiling central character, known as The Voiceless, conceals behind her inability—or reluctance—to speak, a striking, visceral intensity. Layla AlAmmar has skillfully woven a narrative of memory and grief with an illuminating social critique of the position of asylum seekers within contemporary British society. It is daring and devastating.”
—Fiona Mozley, Booker-finalist author of Elmet and Hot Stew

“Kuwaiti writer AlAmmar explores trauma and voicelessness through fragmented narrative form and a mute protagonist who has survived the war in Syria and is now living in isolation in the UK.”
—The Millions

“With a powerful prose, AlAmmar pens a story about a young woman traumatized into muteness after a dangerous trip from war-torn Syria to the UK.”
— Palm Beach Daily News

“Evocative… The conflicts over immigration and racism are brilliantly distilled, and they dovetail seamlessly with the narrator’s lyrical, increasingly defiant narration. Patient readers will find much to ponder.”
—Publishers Weekly

“Silence is a Sense opens the door on lives we need to hear more about. Lyrical, moving, revealing, it made me understand better the very human need for safety and contact.”
—Tracy Chevalier, bestselling author of Girl with a Pearl Earring and A Single Thread

UK PRAISE FOR THE PACT WE MADE:

“[A] fascinating glimpse into the complex and contradictory life of a modern Kuwaiti woman… full of personality and touches of humour.”
—Guardian

“[A] fascinating debut … nuanced and understanding.”
—Observer

“Set in contemporary Kuwait, AlAmmar asks us to reimagine the lives of modern Muslims as they struggle to reconcile the freedom of choice with the customs of their faith.”
—BBC Radio 3 Free Thinking

“So beautifully written and so important, and so cleverly crafted, it can’t be a debut. But it is.”
—Joanna Cannon

“A Kuwaiti #MeToo novel of muffled suffering and a bid for freedom—absorbing, brave and compelling.”
—Leila Aboulela

“Truthful and courageous, radical and lyrical. I loved it.”
—Hanan Al-Shaykh

“Brilliant book about the pressures of being a 30 year old unmarried woman in Kuwait—the struggle for modernity amidst patriarchal tradition—and the cultural failure to acknowledge trauma. What a debut.”
—Pandora Sykes

“The Pact We Made deals with one woman’s search for independence.”
—ELLE

Named a 2021 Most Anticipated Book by:
The Millions: “Most Anticipated: The Great First-Half 2021 Book Preview”
Electric Lit: “43 Books by Women of Color to Read in 2021”
Palm Beach Daily News: “Enter the New Year with These Books on Your List”

Praised as “full of personality and touches of humour” by The Guardian and as “fascinating… nuanced and understanding” by The Observer, Layla AlAmmar’s 2019 The Pact We Made debuted in the UK to tremendous coverage, hailed as a Kuwaiti #MeToo novel that “asks us to reimagine the lives of modern Muslims as they struggle to reconcile the freedom of choice with the customs of their faith” (BBC Radio 3). Now, Algonquin is thrilled to introduce AlAmmar to American audiences with her first novel in the U.S., SILENCE IS A SENSE (Publication Date: March 16, 2021; Hardcover; $25.95). Profound and life-affirming, this novel follows a mute Syrian refugee grappling with her experiences during the Syrian Civil War and as a refugee traveling through Europe as she is gradually and unwillingly drawn into the lives of her neighbors. “SILENCE IS A SENSE opens the door on lives we need to hear more about,” says Tracy Chevalier, bestselling author of Girl with a Pearl Earring and A Single Thread. “Lyrical, moving, and revealing, it made me understand better the very human need for safety and contact.”

About the Book:

Named a 2021 Most Anticipated Book by:
The Millions: “Most Anticipated: The Great First-Half 2021 Book Preview”
Electric Lit: “43 Books by Women of Color to Read in 2021”
Palm Beach Daily News: “Enter the New Year with These Books on Your List”

Praised as “full of personality and touches of humour” by The Guardian and as “fascinating… nuanced and understanding” by The Observer, Layla AlAmmar’s 2019 The Pact We Made debuted in the UK to tremendous coverage, hailed as a Kuwaiti #MeToo novel that “asks us to reimagine the lives of modern Muslims as they struggle to reconcile the freedom of choice with the customs of their faith” (BBC Radio 3). Now, Algonquin is thrilled to introduce AlAmmar to American audiences with her first novel in the U.S., SILENCE IS A SENSE (Publication Date: March 16, 2021; Hardcover; $25.95). Profound and life-affirming, this novel follows a mute Syrian refugee grappling with her experiences during the Syrian Civil War and as a refugee traveling through Europe as she is gradually and unwillingly drawn into the lives of her neighbors. “SILENCE IS A SENSE opens the door on lives we need to hear more about,” says Tracy Chevalier, bestselling author of Girl with a Pearl Earring and A Single Thread. “Lyrical, moving, and revealing, it made me understand better the very human need for safety and contact.”

A young woman sits in her apartment in an unnamed English city, absorbed in watching the small dramas of her neighbors through their windows across the way. Traumatized into muteness after a long, devastating trip from war-torn Syria to the UK, she feels herself sinking deeper into isolation, moving between dreams, reality, and memories of her absent boyfriend, her family, and her homeland. At the same time, she begins writing for a magazine under the pseudonym “the Voiceless,” trying to explain the refugee experience without sensationalizing it—or revealing anything about herself. Gradually the boundaries of her world expand as she ventures to the corner store, to a gathering at a nearby mosque, and to the bookstore and laundromat. When an anti-Muslim hate crime rattles the neighborhood, she has to make a choice: Will she remain a voiceless observer, or become an active participant in a community that, despite her best efforts, is quickly becoming her own?

A brilliant, poetic meditation on identity, memory and the speakability of trauma, SILENCE IS A SENSE explores what it means to be a refugee and to need asylum, and how fundamental human connection is to our survival.

My Review:

The first thing I thought was that the title of this novel, Silence is a Sense, is very mysterious and I was really wanting to get into it.

I was amazed at the pull that the plot had on me from the beginning and found that I was really keen to know the neighbours who lived with the Syrian girl who was for most of the book nameless but who we saw had many struggles to integrate into society as she had just arrived in the UK after an odyssey-like journey which traumatised her but also because her situation was complicated by selective mutism.

I was really drawn into her life and the life of the neighbours in the building that she lived in. The attention to detail in this book is outstanding and I loved every page. I really enjoyed the pace of the book and felt like I was part of the story. It opened my eyes to what refugees experience to get a “better life.”

The book is raw, emotional real and gripping with plenty of tense moments as I never knew how the neighbours would react to Rana and I was constantly hoping that she would find some way to integrate into her surroundings. The mystery of how she would do that is brilliantly portrayed and the atmosphere around that is very well imagined and created. Overall, Silence is a Sense is an incredibly atmospheric book.

Thanks to Layla AlAmaar and Algonquin books for my ARC in exchange for a voluntary and honest review.

5 stars.

About the Author:

Born in the US and raised in Kuwait, Layla AlAmmar has written for The Guardian and ArabLit Quarterly, with short stories published in the Evening Standard, Quail Bell Magazine, the Red Letters St. Andrews Prose Journal, and Aesthetica Magazine, where her story “The Lagoon” was a finalist for the 2014 Creative Writing Award.  She is currently pursuing a PhD on the intersection of Arab women’s fiction and literary trauma theory.

She was the 2018 British Council international writer in residence at the Small Wonder Short Story Festival. Her debut novel, The Pact We Made, was published in 2019. ShHaving watched the Arab Spring unfold in early 2011 with a disquieting mix of hope and trepidation, she explains, “It seemed this revolution transcended the touchstones of conflict we’re used to—religion and sect, tribe and origin, liberal and conservative. It felt like a call for an uncompromising dignity that extended to all areas of life. And yet: what comes after the revolution? The question left me unnerved, confused, and almost unbearably sad. So I did what I always do: I put it to a story. Not to try and make sense of things—for there is, I think, no way of making sense of the horror humans are capable of inflicting on one another—but because I needed a repository for the thoughts and feelings that assailed me.”

On Being a Disabled Woman

For today, International Women’s Day, I have felt the need to discuss what it is like for me being a disabled woman, and some of the challenges I have faced.

Growing up, I felt like it was a bit of a “double whammy” that could lead to discrimination but I also felt proud of my achievements.

I have always had a passion for makeup and clothes. I feel if people are going to stare (and they do but thanks to my severe visual impairments, I don’t notice unless I am told they are staring) then it’s best to use my passion to my advantage. I felt good getting compliments, although kind of shy at times as the reasons people would speak to me when I was in education was usually to bully me, so I was always on my guard.

I remember that it was hard being at an all-girls’ secondary school as although the uniform was the same for everyone, there was a debate over whether a skirt or trousers should be worn. I preferred a skirt but did wear trousers at some point to see if I liked them or not, and I didn’t. I longed to wear clothes that weren’t the school uniform and I was happy when I got the chance in the Sixth Form.

I have learned to accept compliments throughout my life and still do, when people complement me on my jewelry or outfit. My husband is full of compliments always. My purple powerchair always gets compliments too.

I have felt that being disabled and a woman has allowed me to embrace how my body is and why. I still feel proud of how I reacted when, at 11 years old, I told a plastic surgeon I did not want the abdomen scars I have from my hydrocephalus operations operated on because I had had many operations at that time in my life and because they are a part of me.

I remember feeling I would love to fall in love someday, but I was worried about how my possible partner would react to my body. As it turned out, I had nothing to worry about as my husband is respectful and my disabilities have never scared him. He was curious when we met and still always says “I want to know everything you experience and feel, good and bad, because of your disabilities.”

I felt immediately accepted by him through all the stages of our relationship, from acquaintances to friends and more.

I embrace everything I am: a wife, sister daughter and granddaughter. A friend, book addict and lover of words. I am thoughtful towards those who value me. I grew from a shy girl and teen into someone not afraid to say what they think. I do not back down easily.

On this day, International Women’s Day, I am happy with myself as I am. I will never stop my fight for justice and the best life I can live. I am already the best version of me. No regrets.

To anyone who is disabled and doubting themselves, I understand you. It was a real struggle for me to have confidence and I don’t get on with those who even now think I am still that unconfident person I once was and that the can take advantage of that. Nope.

Yes, I require daily support and my views can be “too much” for some, but that does not give anyone the right to try to break who I am. I am only human, too and I am me. I have emotions, I feel happy sad and I laugh and cry and all of that will not be silenced as some people may not know how to act around me.

To all the disabled women out there: Be true to yourself. No matter what anyone else says or does.

Today, I have a purple makeup look: Maybelline Color Tattoo eyeshadow in Vintage Mauve, the lilac shade in Revolution Beauty Unicorn Heart Highlighter and Makeup Revolution Salvation Lip Laquer in Vamp.

Again, I wish you Happy International Women’s Day!

International Day of People with Disabilities: My Experience of the Pandemic

Today is the International Day of People with Disabilities. I have blogged on this day in other years but I feel like with the way this year has been, I need to blog my thoughts here more than ever. I want to show others with disabilities that you are not alone in what you might go through this year. Well, this year has been a surprise and it also has not. Just like everyone else, I had plans at the start of the year. And just like many, my plans have been reduced to wishes. Our plans as a married couple have, too. Through all the months that have gone by since Covid-19 was declared a Pandemic, I have been affected by it although I have not been physically ill. The last time I went out was February. The trip to Primark seems a lifetime ago now. What was I thinking at that time? I was thinking I had to wish my dad a happy birthday in a few days’ time. I was thinking how happy I was that my husband did not mind everything that taking me to one of my favourite shops and everything that entailed. Accompanying me out of our apartment, on the bus and into the shop. Positioning me in the best way so people did not bump into me. Passing me things and making our time out enjoyable. I felt so glad that I had him and that, rather than feel overwhelmed that I, his wife, requires physical support to do what she loves, he just took it all in his stride then and always has done. Now, at the beginning of December, my mind goes back to how this year has been for us. After that trip to the shops, I was looking forward to going again. I loved being part of society, seeing the bright lights, shops, old cinemas and our park. I remember how my mind started thinking of the summer, my favourite season. Long days in the park or hoping the pool hoist was working so we could go. March 14, 2020. The day the world stopped. State of Alarm. I can still remember the fear that sliced through me. I was not sure what it meant, but I knew it was bad. I have always been a little “fearful” of things: MRIs, blood tests, dental appointments or how exhausted I would be after physio or occupational therapy. Of house fires, of people not being able to physically help me. The list goes on. The fear I felt now was subtle, as if this were a joke or as if this were not happening. I admit back then I thought the Pandemic would be over quickly. I hoped it would be that way. I was struggling to keep my voice calm as I told my family that it was not flu. I had always taken medical issues seriously and still do. I think that is something that is ingrained in me due to my complex disabilities. In the months that followed, I would be in floods of tears fearing for my life, my husband’s. We would see our routines altered and I would wake up in tears fearing he was not there or that one or both of us had been in ICU. That was just a horrible dream fortunately. But the images on TV and what the doctors were saying bought home to me how quickly normal life could turn into chaos and that, disabilities or not, all of us were medically vulnerable where Covid-19 was concerned. Images of what I thought I went through to get into this world based on my medical history went through my mind. I had fought to get here. We had to be OK. I made a decision one day. I would do whatever we had to do to survive no matter what it took or what others thought of our approach to what was going on. When we decided to self-isolate, February was not even over. I felt a sense of dread at the unknown world a Pandemic might present for us, since no physical contact between us was not an option since Alfredo is my primary caregiver. I posted on Facebook that it would destroy me if anything happened to those I loved and to please stay safe. “Stay safe” were the two most-used words in my emails in 2020. Unlike some people who may have used the words in a hypocritcal way, I was being truthful when I used them. I knew that if I had to get through this time, I had to stay busy. I could not give up my blogging and book routine. I kept adding to my Goodreads Challenge and at the time of this post I have listened to over 180 books. I did go through frustration too. Frustration when my iPad did not work with my apps. With books being so important to me, I thought “what do I do now?” My MacBook Air saved my life in more ways than one during this time. I was back doing everything I wanted and more and thanks to my dad and Alfredo for helping me get it without me having to leave home. I made it my mission to research well for a laptop that would meet my physical needs. Another low point came now and then. It was feeling like we were the “only ones” at home. In a quiet building, I had no idea who was home. I felt I was missing out on things like we were at a disadvantage. I hoped I was still able to get my muscle relaxants and everything I needed. We were as it turned out. Daily life with CP, hydrocephalus and visual impairments was already a challenge I was used to. Living in a pandemic was not. Very occasionally, people with disabilities were mentioned on the news as being those who, as well as the elderly, were having the worst time. I cried as much as if the person with a medical condition were my family as I found they had passed away and felt I needed to do more to help. I clicked on every Change.org petition I could and hoped that my action would go far. It did. I helped people with disabilities be better helped during the Pandemic. I wished I could know some of them. I felt annoyed with those who were complaining about being at home. I had my books I had Alfredo. I had my favourite TV shows. Online shopping was something I did now and then and it would become a lifeline during 2020. I felt happy I was still able to get what I needed although we did not go anywhere near a shop. I still long to go to a clothes shop but that will have to wait until the world is safer. Keeping us both medically safe was what mattered then, and still does now. With the summer came the wish that the virus would go away with hotter days. I knew that would not happen. We did what we had to do and found support in each other. As someone who feels the cold in a bad way during colder times, I did not want the summer to end. There was talk of the flu vaccine. I was pleased to have it at home after some organizing. Being protected from that, I felt better. All this time, my projects were forgotten about somewhat. I had no ideas. But as November rolled around, I was ready to tell the world my experience. I felt the need to share the story of how I experienced the Pandemic. Combined with my opinions on the books that got me through the year which also found their way into my memoir of this vastly different year, I felt my thoughts and experiences were able to find their place on the page at last, so have been glad for NaNoWriMo this year. Now, we are in the early days of December. My Gran has mentioned my birthday a few times and I have been a little quiet about it. I know that we will do what we can that day and I do like this time of year for how festive it can be. I realise this year has been very tough for me, my husband and others. On this, the International Day of People with Disabilities, I want to spread hope and good wishes to everyone who is battling through the Pandemic with the added uniqueness that having disabilities brings. Because we came into the world how we did, that does not mean we are less. I have been shocked at the further injustice people with disabilities have had to face. Further cuts in care services and missed appointments where social distancing measures cannot be met. Within the disaster of a year this is still being due to the Pandemic. I feel I am not “the only one” experiencing fear, doubt and even loneliness. Instead, I know I am fortunate. Fortunate not to be in hospital and fortunate to be alive. Fortunate that we can still afford all the food we usually eat and that we do not have to go to an emergency center for help, food or shelter. We have our apartment but at least we have it. We have had to fight for better access to some parts of the building and we got that this year. Another frustration for me was that due to social distancing and the dangers of the pandemic we have not been able to take advantage of that so much. One thing I tell myself is that someday we¡ll be able to. My last reflection for today is that if Covid-19 has bought something good for me in terms of my disabilities, it has allowed me to be vaccinated against the flu in the comfort of our apartment and it has meant that there is hope for Alfredo and I being able to have the Coronavirus vaccine sooner than most because of being in a “vulnerable” group. Until that day comes, we will keep doing the best we can to get by each day. Love to those who have thought of us this year. And hope, support and strength to everyone who has some kind of disability or medical condition that is making the Pandemic more of a challenge. My message to the world is: We Will Get Through This. We have in spite of the hard parts. We have hugged and kissed as well as supported each other unconditionally. When we married, we made a promise to be there for each other always and care for each other. So, now more than ever, it really is a case of “in sickness and in health.” No doubts or questions asked. Our priority is our heath and wellbeing now more than ever and I hope that next year is a better one. Whenever you think this time is hard, think of what (or who) you have and find strength in the fact that one day life really will be back to normal as we knew it. I have felt the Pandemic has stripped away everything we worked so hard for at times as it is such a marked change. But what we knew is still there. We just have to be responsible if we want it back.