Tag: Retinitis Pigmentosa

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Freedom In Acceptance

Freedom In Acceptance

After extensive tests, I just remember the words “you are going to go blind.” My world just shattered, the room spun and I just had to get out of there. 

Victoria Claire

Women On The Move 57 | Victoria Claire

When I was first diagnosed with Retinitis Pigmentosa (RP) at the age of 19 was a very pivotal point in my life. I was already studying at art college and had just been offered a university place on a figurative sculpture degree course. With only 28 offers in Europe, was one of those 28.

Victoria Claire & The Guardian image description is in the body of the post.
Victoria Claire & The Guardian

After extensive tests, I just remember the words “you are going to go blind.” My world just shattered, the room spun and I just had to get out of there. I drove home and dropped off my mum and then drove off. Ending up on the beach, I sat on the end of the jetty. The sky was grey and the wind was howling, I just cried, and thought the tears would never stop.

That was 24 years ago and my sight loss has taken me on one heck of a journey. I was registered legally blind back in 2002. Currently, I have between 3-5% residual vision, this is hand movement in the left eye and shapes and light in the right.

Although I had to walk away from university I could not deny that sculpture was in my veins. After taking some time to adjust to my new circumstances, picked up a chisel and mallet and begin creating. This was really for therapeutic reasons at first but then I began to put my work into local galleries. In a short amount of time, I was gaining private commission work. Since then my work has gone from strength to strength. I’ve worked in teaching for many years and this was a nice way to diversify my artistic skills and share them with others.

Turning The Corner

My personal epiphany with my attitude towards my sight loss came only 3 and a half years ago. I had always dodged the need to use a long cane. For years organizations tried to introduce me to using a cane without success. Then about 5 years ago I had a very big wake up call.

I was out walking my little Westie dog. It was November and the autumn sun was very low in the morning sky. I had on my sunglasses but it was very difficult to see and I misjudged a left turn. Instead of turning onto the pathway leading to the park, I fell 6ft into a culvert.

The fall damaged my right knee severely, tearing my inside medial ligament. It was extremely painful and I could not walk and it took 3 months to properly heal. This was when I decided I could no longer keep on struggling without a mobility aid.

Initially, I thought perhaps I needed a Guide dog so I contacted my local Guide Dogs Association. After some initial training, I had to stop my application, when we realized our Westie would never let another dog in the house! So there was no other option for me than to bite the bullet and learn how to use the long cane.

After 3 months of long cane training with my incredible trainer, I passed and became a proficient cane user. I now have gone from a cane hater to a cane lover, owning 4 long canes including my faithful purple one and a bamboo one that I created myself.

  • Victoria Claire

    Shaded of Lillies

  • Surf, Sand And Spirit

Crucial Component To Acceptance

Self-development has played a very important part in my acceptance of my sight loss. I worked very hard with my holistic counselor. For nearly 4 years we worked on my self-worth, learning how to love myself, and embracing every part of myself. It’s been the most wonderful journey, connecting on a spiritual level feeds me with all I need. This is the very reason why I am where I am today, through an acceptance of who I really am and a love of all my imperfections. It is truly a beautiful lesson, and I look forward to all the future lessons ahead.

I am happily married to my husband, who is an incredible support, he has such a positive outlook on life and helps me find solutions to how I can continue breaking boundaries. My parents have always been there for me, providing practical help and support throughout this journey.

True Work/Life Harmony

My work has been my source of connection to my inner self. It has seen me through some very tough times and has brought me the success I now enjoy today. My work is symbolic, based on form and shape and I use piercings in many of my pieces–I create my sculpture from wood and I like to suspend gemstones.

I have exhibited all over the South East of the UK, including central London, the Houses Of Parliament and America Square. Also, I have been featured by the BBC and in many national magazines; my work is owned internationally.

A national gallery is reviewing my Blind A Sixth Sense exhibition for inclusion in their exhibition programme for 2020-2021. This exhibition explored a unique concept of placing 6 sculpted pieces depicting the senses into a pitch black gallery space. The public was invited to interpret the work by using their other senses. This was an incredible success seeing over 500 people visit the exhibition and a sell out on work.

Sight Loss Change Agent

As an Ambassador for the national charity Retina UK, I advocate the work of the charity. This includes social media, public speaking and offering support to those newly diagnosed with RP. This advocacy work is very dear to my heart. I want to offer help to those who may be struggling with their sight loss by helping them navigate their own pathway through this very life-changing time.

Victoria Surfing
Victoria Surfing

I share my experience of sight loss through public speaking, exhibiting my work and will be writing my memoirs later this year. I’m also designing a new website which will act as a central hub for those with sight loss. It will be a place where the blind and VI community can connect, share stories, and support one another.

The website will also highlight all of my activities, including my career as a professional sculptor, public speaking and my Ambassador work. I will share all of my other loves, this includes surfing, something that I learnt only 4 years ago. Surfing is one of the most freeing activities I’ve ever done. There are no obstacles in the ocean and the feeling of connection to the force of mother nature as you ride a wave is just incredible. I’m also a keen skateboarder, and again, like surfing it gives me such a sense of freedom. I use my long cane out in front of me in my left hand, this helps me navigate. I am learning to snowboard too, I think the board sports give me such joy.

Finding Freedom

I’ve been a musician for over 20 years, singing and playing in many bands as well as solo work. I love to write new material on my piano, it’s a beautiful form of expression.

I feel so very blessed to have found a sense of freedom within the acceptance of my sight loss. This acceptance has shown me the beauty within blindness–a sense of stillness, a sensory experience that you cannot gain when sighted. A connection to one’s own trust, this trust is what will open you to all possibilities.

I have learnt that blindness is not to be feared, it is to be embraced wholeheartedly, through acceptance, adaptivity, and accessibility. You can live a life that is full, joyous, successful and incredibly meaningful, with limitless potential.

Freedom In Acceptance Featured Image Description

In this photo, Victoria is stunning as she stands facing the camera with her bamboo long cane. She is wearing a beautiful cream lace dress and her straight blond hair frames her face.

Additional Images:

  • Victoria & The Guardian. In this photo, Victoria, in a purple sleeveless sheath dress and matching long cane is posing with her sculpture, The Guardian. The Guardian is a wooden sculpture of a vertical wing. The photo was taken at the FLY Freedom In Acceptance exhibition in central London. 
  • Shaded of Lillies is a lovely wooden tactile tabletop delight. Three graceful flowers, from light to dark shades stand atop a light wooden base. The slender stems of the flowers ever so slightly bend upward to the floral base which resembles raised cupped hands.  
  • Surf, Sand And Spirit. This piece depicts a symbolic upright surfboard with an amber suspension hanging from the piercing. The base represents the ripples that form in wet sand, this piece is created from alder wood and oak wood.
  • Victoria Surfing: An action shot of Victoria riding a wave on her surfboard in a wetsuit.

Connecting With Victoria Claire:

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Elin Williams | Blind Beauty 49

Blind Beauty 49 Featured Image Description is in the body of the post

Elin Williams | Blind Beauty 49

“I have been living with sight loss for the most part of my life but I don’t wake up everyday wishing that things were different or hoping for a cure…”

~Elin Williams
Image 1 description is in the body of the post.
Image 1

I am delighted to introduce you to the Award-Winning Lifestyle Blogger, Elin Williams, creator of My Blurred World. Elin, who has been blogging for several years, won in two categories of 2018’s Teen Blogger Awards.

Retinitis Pigmentosa (RP) and a love of writing gave Elin a platform where she shares her passion for storytelling and building awareness. While she lives with the sight-stealing eye disease RP, Elin shows us how a person can continue to thrive with sight loss.

Image 2 description is in the body of the post.
Image 2

A poised young woman who loves all things fashion and beauty, Elin is an aspiring free-lance writer. Her blog has evolved over the last three years into one where she discusses many lifestyle topics. The following snippet is just a tiny glimpse into how Elin approaches life.

“I have been living with sight loss for the most part of my life. Even so, I don’t wake up every day wishing that things were different or hoping for a cure. Instead, I choose to embrace my life and to approach it in the most normal and positive way I can. As my world becomes more blurry, I never lose sight of what I want to achieve and the positive attitude I want to maintain. I believe that no matter what you’re going through, there is a beautiful life beyond it.” 

~Elin Williams 

Blind Beauty 49 Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. Elin is on the cover standing on a cobblestone pathway in a green lush garden with stone walls and steps. Her straight shoulder-length brunette hair is swept over her left eye. She is wearing a boat-neck black & white striped top that reveals a small portion of her shoulders with a denim button-down skirt.

Blocks of text superimposed on Elin’s photo are: “Bold | She Keeps Pressing Onward,” “Blind | She Has Deeper Insight,” “Beautiful | She Sees To The Heart Of Others”

Additional Photos

  1. In this photo, Elin is standing in a wooded area on a gravel pathway at a fork in the road. Her hair is wavy and she is wearing black pants, and a white sweater under a gray blazer.
  2. Elin is standing/leaning against a wood railing on a wooden deck. She’s wearing a gray skirt, white top and she also has a bright red handbag over her right shoulder. In the background is a variety of greenery and flowers.

You can catch up with Elin on the following social media platforms:

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WOTM 52 Featuring Suzanne Clarke

Suzanne Clarke Featured Image Description

Women On The Move Featuring Suzanne Clarke

“For me, my biggest fear was being seen. Not just on the outside, but on the inside… like really being seen. For as long as I can remember, I’d always kept myself small, blending in and not really wanting to stand out. 

Image 1 Suzanne Clarke image description is in the body of the text
Image 1

I’ve continually dimmed my light and played the wallflower. So much more comfortable than standing in the spotlight. Even though deep down, I knew there was something much bigger I could be doing. I didn’t know what it was, it was just an inner knowing that I’d been put on this earth for a much greater purpose.” ~Suzanne Clarke

Today we are pleased to share Suzanne’s story of grit and determination on receiving her devastating blinding eye disease diagnosis. Throughout this article are some of Suzanne’s favorite quotes that help to keep her grounded.

A Dream Fulfilled

I’d wanted to be a nurse since I was 4 years old. I achieved that dream and completed my Nurse training in 1987. I later found my niche in Hospice and community palliative care nursing. It wasn’t a job to me, I loved what I was doing. Yes, it was hard at times, but oh so rewarding.

2. Image description is in the body of the post
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In 2016 I relocated to Dorset. Another dream of mine to live near the sea. A year later, I had a job all lined up in a hospice there, and all was going great. Then I broke my ankle, so I was out of action for a good few weeks.

“There’s no need to be perfect to inspire others. Let people get inspired by how you deal with your imperfections.” ~Ziad K. Abdelnour 

Later I had a diagnosis of osteoporosis confirmed. During that time I was under the hospital ophthalmic team. The opticians had picked up something on my retinas. My Dad has RP (retinitis pigmentosa) and there was concern over whether I had inherited it. I was in denial, so put it to the back of my mind to deal with when the time came.

A Diagnosis Confirmed

That time came way too quickly! A series of tests confirmed that yes, I had RP. Shortly after that, the DVLA (Driver and Vehicle Licensing Agency) asked for my license back. I was emotionally crushed for quite a long time and turned into a hermit. I didn’t leave the house much, because what if I fell over again and broke something? Additionally, I couldn’t see in the dark without a torch. If I could fall over in daylight and break my ankle, what damage could I do at night? That made it an incredibly long and dark winter – and not just the long evenings, my emotions were in a dark space too…

“Don’t lose hope. When it gets dark the stars come out.”

I couldn’t take the job at the Hospice. It was ok to drive to, about 45 minutes away. It was too far and difficult by public transport – which doesn’t mix well with shift work!

Image 4 quote and description is in the body of the post.
Image 4

I didn’t know about the RNIB Access to Work scheme back then. So I moved back to Hertfordshire where I’d lived previously for 40 years. I was looking for security and familiarity. If I was going to lose my sight, I wanted to be somewhere I knew well.

A Destined Calling

Fast forwarding a few months, I found help and support where I least expected it. An RP Facebook group and an awesome poet, Dave Steele!

I’d also been doing some intense internal healing work, in groups and one to one— thanks to Denise Barbi and Anna Hunt. I’d reached my rock bottom—the only way back was up! Along with that returned the niggle of serving my purpose, of getting my story out there to help others. I’d suppressed this for so long, but I couldn’t keep it or me hidden anymore. It was fit to burst.

“However difficult life may seem, there is always something you can do and succeed at.” ~Stephen Hawking

The urge to help, guide, support, mentor and teach others was too strong. I knew I had to be seen to do this, but it just had to be done. It started with social media and has gone on from there.

I am now working as a volunteer for the RNIB (Royal National Institute of Blind People). One of my many roles is to co-facilitate confidence building and living with sight loss courses. Also, a community connect role bringing people together and meeting up, so they feel part of a wider community and less isolated. I’m also going to be a roaming technical volunteer. Visiting blind/visually impaired people in their homes. Helping them with their technical equipment, which again helps them feel a sense of connection and belonging.

The Guest House

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond. ~Jellaludin Rumi

So I have now made friends with my RP. I had to in order to move on with my life. What at first felt like the end of my world, was actually a wake-up call that broke me open at the core. It showed me that, for me, my life had to be shaken up from my foundations and rebuilt on more solid ground. It’s actually been a beautiful transformation. As painful as it was at the time. After all, you can’t make an omelette without breaking eggs!

Suzanne Clarke Featured Image:

Suzanne smiles brightly for the camera wearing dark-framed eyeglasses and sporting her sassy short silver hairstyle. She is wearing a red and black floral v-neck top.

Additional Images:

  1. A selfie of Suzanne wearing eyeglasses and a white v-neck top.
  2. “An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great.” The image is an arrow above the quote on a yellow background.
  3. “True confidence doesn’t come from your not having any fear it comes from hurling yourself to act in spite of your fear.” ~Dr. Barbara De Angelis In this image the quote is above sand dunes against a dark purplish night sky.

Connecting With Suzanne Clarke On Social Media:

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Nasreen Bhutta | Blind Beauty Issue 44

Blind Beauty Issue 44 Nasreen Bhutta

Nasreen Bhutta | Blind Beauty Issue 44

“Dynamic professional, loving Woman and Mother! Life is like a roller coaster, embrace its thrill and enjoy every moment.” ~Nasreen Bhutta

Being The Change

If I had one word to describe Nasreen Bhutta, CEO of Project Starfish America, it would be fiery. Nasreen is one of those rare gems who is truly passionate about people. She is an open, intelligent, tenacious, energetic agent of change who also has Retinitis pigmentosa. Retinitis pigmentosa, also known as RP, refers to a group of inherited diseases causing retinal degeneration.

The first time I met Nasreen was several months ago on a conference call with several attendees. Since the call was our first meeting, each attendee was asked to introduce themselves to the group. Like a true introvert even though I know it’s coming I always choke during these initial sessions. So instead of paying attention, I was rehearsing a silent dialogue of what I’d say. I felt I did alright until the last person spoke.

By now you’ve probably guessed the last person at bat was Nasreen. She not only introduced herself, she went around the virtual room making a comment on something each of us said. This may not seem like a big deal but it spoke volumes because it showed she was carefully listening to each of us.

When Nasreen spoke about her involvement with Project Starfish America I knew this woman was fully invested in the program. In a nutshell, the organization works to help people with disabilities to launch or re-launch their careers. Nasreen, who speaks passionately about the project, is committed to making a positive change in the lives of these individuals.

Mahatma Gandhi once said, “Be the change that you wish to see in the world.” Nasreen is a living example of what this quote means.

Contact Information for Project Starfish America and Nasreen Bhutta:

Blind Beauty Issue 44 Featured Image Description:

The featured image is a faux fashion magazine cover titled Blind Beauty. Pretty brunette and sunglass-clad Nasreen, is standing outside wearing a burgundy dress with a black sweater. In celebration of her daughter’s graduation, she is smiling broadly while holding a bouquet of red roses.

Blocks of text superimposed on Nasreen’s photo are: “Bold | She Keeps Pressing Onward,” “Blind | She Has Deeper Insight,” “Beautiful | She Sees To The Heart Of Others”