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WOTM Featuring Suzanne Clarke

Suzanne Clarke Featured Image Description

men 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
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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.

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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.
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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”

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Jennifer Dutrow | Blind Beauty Issue 37

Blind Beauty Issue 37 Featured Image Description is in the body of the post.

Jennifer Dutrow | Blind Beauty Issue 37

“My sight loss was a gift in disguise. After mourning the loss like that of a family member, I came to realize that my disability gives me power…to teach, encourage, inspire, and lead. I will never regret my sight loss.” ~Jennifer Dutrow

Everyone needs a hero and I’m so happy Jennifer Dutrow is one of mine. I’ve followed Jen’s fitness journey for some time now and this woman is an inspirational beast! What I like most about Jen is her authenticity as she works to get a healthier lifestyle.

Jen’s workouts are intensive and she brings it: the good, the bad, the ugly. She shares her struggles, keeps pushing through, and is getting some fantastic results. Her message is always on target and she shares important life lessons about self-care. I’m actually learning to think differently about what I eat remembering my body needs food for fuel. Breaking an unhealthy lifestyle isn’t easy and it won’t happen overnight but watching Jen keep herself accountable is comforting.

Like all the Blind Beauties featured here, Jen is thriving through her sight loss. Retinitis Pigmentosa (RP) is stealing her eyesight but not her spirit. If you are looking to invest in your health follow Jen on Instagram at @fitchickwiththestick. 

Blind Beauty Issue 37 Featured Image Description:

Blind Beauty faux fashion magazine cover. Jennifer is outside in bright sunlight smiling for the camera. She is wearing a hot pink knit beanie and a pink jacket. There are multi-colored dots on the frames of her oversized sunglasses which coordinates nicely with her outfit.

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

Eileen Robinson featured image description is in the body of the post

Women On The Move Featuring Eileen Robinson

Eileen Robinson, aka The Blind Gypsy and one of Bold Blind Beauty’s lead beauty advisors is from South Africa. While we haven’t met in person, before we spoke live I felt like I already knew her. Her writing style is so authentic and energetic it feels like you’re having an actual conversation. Enjoy!

A Young Old Soul

I’m an old soul living in a world full of people who wish to be younger, I am embracing my old age, being 30 is the new 21 my dears. My favourite music is from the seventies and the eighties. My mother forced me to listen to old school music when I was a little child and I grew in love with it. Thanks, mom, you rock.

Queen is the absolute best band ever (go listen to them, you won’t regret it). Their music motivates me and is literally my life anthem song, as Queen sang loud and proud “Don’t stop me now, I’m having such a good time, I’m having a ball. Don’t stop me now” These words describe me perfectly.

Growing Up

I grew up in a happy home (for the most part, remember, no family is perfect, they are all full of interesting folks). I was the eldest sibling and had two younger brothers. My folks are still together today, a whole 33 years, sheesh, well done Mom and Dad! Growing up, we always had animals, chickens, cats, dogs, rabbits, doves, fish, snakes, Bearded Dragons, guinea pigs and lastly my little brothers, hehe, I’m kidding. I grew up loving and respecting all things great and small.

After I finished school, I studied bookkeeping and credit management. I love numbers, they are so interesting and when the books balance, then that’s just one of the best feelings in the world. My career has always involved numbers, pretty nerdy right? Oh well, someone has got to do it.

Life carried on, I planned on having children before I reached the age of 30 (back then I thought 30 was ancient, little did I know what curve balls life throws at you) needless to say the only kids I have are all covered in fur, and there is absolutely nothing wrong with that, as Bon Jovi sang “It’s my life and its now or never”, clearly I love my old school music right. Quotes from songs for days.

Subtle Clues To Eileen’s Impending Sight Loss

I have always struggled to see in the dark for as long as I can remember, I didn’t think it was an issue, as many people would say they were “night blind”, so I assumed I was “night blind” too. I was 28 when I realised something was not right with my eyes, I was sitting on my bed, waiting for Netflix to start up.

At the time I was quitting smoking and had one of those Vape Goodies (it was completely black, black is my favourite colour) I was sitting on the bed and looking down at the bedspread and looking, just looking for the Vape. I couldn’t see it. What the hell? I knew I had put it down in front of myself on the bed. I frantically started patting the bedspread (like a little kitty trying to have fun with your sheets when you are making the bed) eventually I found it, it was where I had put it, RIGHT IN FRONT OF ME.

Joh, I need glasses, is what first popped into my mind. However, being a typical person, I put off the optometrist appointment for about a month or so. I had accustomed myself to just patting my bed if I “lost” something on it, I had accommodated to my bad eyes. Which is not on, if you feel uncomfortable with your eyes in any way folks, go to the optometrist, they are there for a reason.

“Making Visual Impairments beautiful. I have Retinitis Pigmentosa. Loud, Proud & honest. Just a normal gal living in this world. South African.” ~Eileen Robinson

The day I booked an appointment with the optometrist I was going downstairs and all the steps seemed to mould together into one colour, again WHAT THE HELL. That’s when I decided, enough was enough, you need glasses girl. So off to the optometrist I went.

He did the regular tests and confirmed that I did need glasses, however, he wanted to refer me to a specialist. Huh. Why? What’s wrong? All these funny questions went through my mind. Believe it or not, going blind was not one of those thoughts, the irony.

So yet another adventure to an eye specialist. I felt welcomed there, it was a place that felt warm and friendly. My name was called, my turn to hear what the optometrist was going on about. The one thing I love about my specialist is that he doesn’t beat around the bush. He told me I had a rare degenerative eye disorder (which I was born with, it’s not contagious, don’t worry folks) called Retinitis Pigmentosa.

I literally just sat there in my chair and stared at him. Seriously, all I needed was glasses, now I found out I would probably go blind. I was upset hey. So angry, I said I would much rather be deaf blah blah blah. What an ignorant fool I was.

Emotional Trauma Of Sight Loss

The next couple of months were very rough. I cried a lot like so much I thought my eyeballs were going to dry out. I was angry, lashing out at my family and friends. My fiancé was my rock though, listened to me, I was also a stuck record, kept saying the same things repeatedly, “why me? This sort of stuff happens to other people” silly things like that.

Anything bad that would happen, for example, knocking a glass over, kicking my toe on the corner of a couch etc. I would blame my eyes and get all angry over again. My fiancé reminded me often, even people with sight and no eye issues do the same, he reminded me that I am just a human who makes mistakes like everyone else and to let the anger go.

It took some time before I eventually took his words to heart. I started to get out of the dark hole, it was not an overnight transformation. It took time to be happy with myself again and to start loving myself again. I had a great support base, for which I am eternally grateful for. I was surrounded by people who loved me regardless of my eye issue and the clumsy situations I got myself into.

“Ignorance may be bliss, however when you have a degenerative eye disorder it’s not. Retinitis Pigmentosa (RP) is killing my eyes slowly but my heart and soul have never been more alive.” ~Eileen Robinson

To be honest, this Retinitis Pigmentosa was a blessing in disguise. I stopped being a vain woman, stopped judging a book by its cover and got to know a person for who they were. The world is a beautiful place and it’s what you make of it.

Most of my RP stories are hilarious, I once laughed so hard that my chair actually fell off the balcony. I was seated way to close to the edge and it was dark (the balcony was 2 metres high above a flower bed) I was in the chair when it went over the edge. All I remembered was what my father said, tuck and roll (as I didn’t want to break my neck) all I could hear was my friend laughing, I got up off the ground, dusted myself off and laughed till I cried. Good times. Full of bruises though. Each bruise is a story and a conversation starter to be honest. I am ALWAYS covered in bruises.

Eileen Robinson—The People Person

Currently, I work as an office manager at a Fraud and Forensic firm. It’s a fascinating environment, catching the bad guys is awesome. If you do the crime, then be prepared to do the time folks. My employer and my fellow colleagues have accepted my eye condition. I have told them about it. They are like a second family to me.

I am studying Human Resources as well. I love people. To understand people is a fascinating thing for me, to know what makes them tick, to know what makes them sad, happy etc. I feel like this is a good choice in my career, as being a people person, you don’t necessarily need sight. You can “read” a person purely by speaking to them. I love to talk, as many people know. Verbal diarrhea, as some of my friends say, sorry not sorry.

Living Life The Best Way Possible

My mission in life is to bring joy. I want to educate people that there are different levels of going blind. Visual impairments happen on all different levels. While I still play with my makeup, I just make sure that my make up station is by the window for more light. I still drive, daytimes only though. I still cook, clean and carry on with my daily life.

Just always need to make sure that there is enough light around me. It can be frustrating at times. I’m not saying my life is perfect, no one’s lives are perfect. I am just trying to make the best of this situation that I have been dealt with. You can either let something terrible bring you down and you can be angry forever, but what’s the point? What is the point?

As Queen sang once again “ Tonight I’m gonna have myself a real good time, I feel alive and the world I’ll turn it inside out – yeah”

Remember, everyone is special, disabled or not. Don’t be so hard on yourself. You were put on this wonderful planet for a reason. Smile away, folks.

Let’s make Visual Impairments Beautiful.

Love The Blind Gypsy

xxx

Eileen Robinson Featured Image Description:

In this selfie, Eileen is wearing a white top with a rhinestone embellished neckline. She is sporting dark-framed eyeglasses and her long dark hair is slightly covering her left eye.