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Words: Balancing Realism, Compassion & Hope

Balancing Words Featured Image Description is in the body of the post

Words: Balancing Realism, Compassion & Hope

“Long after your final patient has gone home, somewhere somebody’s life may be falling apart due to the conversation you had with them earlier that day.” ~Fern Lulham

Editor’s Note: The following article was written by an amazing motivational speaker I recently met. When Fern Lulham was born her parents were given devastating news about their precious newborn. 

Dear Doctor Choose Your Words

Image 1 Fern Lulham description is in the body of the post.
Image 1 Fern Lulham

What is the scariest thing about an operation? Is it the pain you might experience? Is it that the procedure might go wrong?  For many people, it is the idea of putting their life into the hands of a doctor. Of course, not all operations are life-threatening.

Not all operations carry with them the risk of death. However, every single operation will involve a threat to their patient’s well-being. And this threat does not just apply to operations.

In what other contexts do you have contact with your patients? Every consultation brings this same hazard. Every appointment presents this same danger. And every single conversation you have with a patient puts their life firmly in your hands.

When we go through a medical process, doctors are legally obliged to inform us of the potential risks. And yet there is one very important risk which is not considered; something which can be just as lethal as the surgeon’s knife. It is our doctor’s choice of words.

Words, when placed into the hands of doctors can be deadly. To patients, their words equal truth, their opinions are facts. Their diagnosis is final and our future is whatever they say it will be. I want each and every one of you to know that you are incredibly powerful people. You might not always feel like it, but for most of us patients, you and your words are everything. Always remember this. You and your words are powerful.

And with that power comes great responsibility. When you are talking to a patient, what are you thinking? Are your thoughts with that one patient in that one moment? Do the words you choose tell that patient that they are not just one more name on your seemingly endless list?

Words & Trading Places 

I would like you to think for a moment. I want you to remember a time when somebody has said something which has really stayed with you. A small collection of words which days, months, even years down the line, you can still hear ringing in your ears. How do those words make you feel?

  • They may be angry words of disappointment or disgust.
  • They may be the words of a bully at school.
  • They may be the encouraging words of a friend.
  • They may be the advice of a parent.

Such words can have a huge impact on our lives and on the way we feel about ourselves. And isn’t it surprising how we can still hear them as clear as day as if they have just been said to us just a moment ago?

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

Have you ever left a voicemail message and felt self-conscious about the way you sound? Your sudden awareness of the structure of your sentences and things not sounding the way you intended. We do not think about this until we know what we have said can be replayed and listened back to again and again.

When I am speaking to an audience, I am very conscious of the words I use and what impact they are having. Why? Because I know that people are listening. What we don’t think about is that people are always listening. They are listening particularly carefully when it is their doctor who is speaking to them. And everyone carries around a means of recording that information and playing it back at will in their minds. Everything you say is being mentally recorded and, believe me, your patients are replaying it over and over and over again.

Rewind Replay

I know this because I do it myself – for hours! Entire evenings after the hospital visit before, have been dedicated to going through these conversations with a fine tooth-comb. Long after your final patient has gone home, somewhere somebody’s life may be falling apart due to the conversation you had with them earlier that day. For them, it does not end when they leave the hospital. Words which concern them, words which terrify them, words which they don’t even understand. Words which haunt them for who knows how long…

Image 3 Fern & Mr Hamada description is in the body of the post.
Image 3 Fern & Mr. Hamada

When I was only a few weeks old and first diagnosed with a visual impairment, my parents were told: “your daughter will never see.” Can you imagine how that would make you feel as a parent being told this by a doctor? Devastation. Hopelessness. Fortunately, he was wrong and I can see – not much albeit – but I can. Even if I couldn’t though, I’m sure you can think of words of hope and encouragement which may have helped my parents then and which may have helped me hearing my story years on.

These days, I go to the Queen Victoria Hospital in East Grinstead. My parents and I have left that hospital feeling just about every emotion known to man. We’ve had good news, bad news and every kind of news in between. The reason my parents come with me, even though I could easily tell them what happened when I got home, is to hear the exact words which are spoken. We have all come to trust that from my consultant, Mr. Samer Hamada, regardless of the stark medical facts, there will always be words of confidence, compassion, understanding and, most of all, of hope.

The Power Of Hope

Image 4 Fern and Nancy description is in the body of the post.
Image 4

This is the thing we crave whenever we are told of my progress. To know that even if things are not going to plan right now, it doesn’t mean they never will be. To be assured that even when there is not an immediate solution, the potential for a solution is always there.

Mr. Hamada speaks with such passion about his work and is so enthusiastic and excited about developments being made in medical science. This is hugely infectious and makes me strongly believe that he truly wants to make things better for me, as much as I would wish it for myself. It is inspiring and encouraging and gives me a reason to keep going, even when my world is uncontrollably getting darker all around me by the day.

So to all doctors, I say, please think about the words you choose and the way they are spoken because, to your patients, words can really be the best medicine.     

Balancing Words Featured Image Description:

A representation of the medical profession, this photo includes a stethoscope, pen, and open laptop on a white background.

Additional Images:

  1. Fern is a pretty brunette with bangs and hair length just beyond her shoulders. She is wearing a white tank top with a chunky silver statement necklace.
  2. In this photo, Fern is standing at a lectern at a speaking event. She is wearing a dark-colored cold shoulder dress with a silver necklace and ankle boots.
  3. Fern is posing in this photo wearing a sparkling lacy red dress with her consultant, Mr. Samer Hamada. 
  4. Nancy (Fern’s golden lab guide dog), is so adorable as both are seated on the floor. Nancy’s paws are on Fern’s shoulders as she gives her human an affectionate kiss. They are both wearing party hats (Nancy’s is pink and Fern’s is green).

Connecting With Fern On Social Media:

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Melody Goodspeed | Blind Beauty Issue 45

Melody Goodspeed | Blind Beauty Issue 45

Melody Goodspeed | Blind Beauty Issue 45

“The end result, a hopeful Melody, in pain, and totally blind…I felt like the person I was, died and hope no longer existed. Fast forward a few years and finally, I decided no way!”

The first time I read the above statement from Melody Goodspeed, it gave me chills. She went on to say “No way am I going to let this darkness take me down! Against all odds, I was determined to have the life I want. Is it different? A huge “YES!, however, that does not make it any less beautiful.”

There is no sugar-coating sight loss especially when it happens suddenly. The experience is different for everyone. Some people adjust more quickly than others and some never do. It’s a personal situation that doesn’t come with a blueprint for getting through it but getting through it is possible. Broadly speaking, I believe people who thrive on the other side of sight loss are those who’ve decided to do so. Melody is one of these people.

An important point worth mentioning is while many of us continue to thrive with sight loss, it doesn’t mean it’s easy. Like everyone else, we face challenges every day. It can be frustrating and sometimes scary because we are so focused on the information we are consuming from our surroundings. Depending on the circumstances it can be overwhelming at times yet we push through. This doesn’t make us superhuman or extraordinary people. We are just living our lives to the best of our ability.

Blind Beauty Issue 45 Featured Image:

The featured image is a faux fashion magazine cover titled Blind Beauty. In the photo, Melody is working a Touchstone Crystal party. She sparkles as she smiles brightly for the camera dressed in a camo print cold-should top. Melody’s shoulder-length light brown hair frames her face and she is sporting a Touchstone statement necklace.

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

You can connect with Melody on: 

 

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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
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
Image 2

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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A Dedication To Advocates A.K.A. Champions

Champion Featured Image description is in the body of the post.

A Dedication To Advocates A.K.A. Champions

Courage
Honor
Attitude
Motivation
Persevere
Integrity
Optimistic
Never giving up

One of the definitions for the word champion is “a person who fights for or defends any person or cause.” I can’t tell you how awesome it feels to work with so many champions (women & men, sighted & nonsighted of all abilities) featured here on Bold Blind Beauty.

“Belle et rebelle” (beautiful and rebellious)

I recently came upon the lovely term “Belle et rebelle” from a blog post. My friends at Green Global Trek recently used the phrase in Postcards from France ~ La Rochelle. When I saw the phrase I immediately thought of this community because we are shaking things up. The following song with the lyrics (below the video) is dedicated to you. Together we are breaking down barriers!

Here’s to all the Belle et rebelle:

Helen KellerAngela WinfieldSusan & Sherri RodgersEmpish ThomasAmy Hildebrand, Libby ThawKaren RowieJule Ann LiebermanEmily DavisonSuzanne GibsonFatmatta WurieStephanie Stephens VanSue Wiygul MartinJennifer RothschildLeigh Anne FocaretaKerry KijewskiJill KhouryChelsea StarkPaul MugambiMaribel SteelMary (Mel) ScottAmy BovairdCharlotte PoetschnerAudrey DemmittDonna HillSusan KennedyHolly BonnerKimberly WhiteTosha MichelleAshley NemethJenelle LandgrafJoy ThomasArie Farnam, BlindBeaderNicole Schultz-KassMara LaurenBecky AndrewsCarla Ernst, NicoleChristie SmithSilvia SeyringerJo Elizabeth PintoMaria JohnsonTaylor PapadopoulosVirginia MazeMegan DarcyRose-Ann LyonsLynne NicholsonCasandra XavierChristina HoltzclawEileen RobinsonDiane KrekMelody GoodspeedAngie RobertsLiz OleksaJill StephensShaini SaravanamuthuBeatriz García MartínNysha CharleneChrissy AntonopoulosBrittany WinnerEmily MetautenIvana TorbicaLizzie CapenerJayd Alex, Mja StæinarrJade RamosVictoria ClaireJennifer DutrowJ RenéeHawkeyeFaith & SavannahSuzanne ClarkeMarieke DavisNasreen BhuttaKathy Keck, Kirsty MajorLisa SalingerCaitlin HernandezAshley MorganLeslie ThompsonTori ClarkMichael RobertsonSherry IngramPortia MasonPenny ParkerPeggy FleisherMatt De GruchyJessica JannengaGlenda HarrisonJennifer Barrille, Laura Sottile, Jessica Marano, and let’s not forget you, our followers and supporters without whom none of this could be possible.

The Champion (Carrie Underwood)

I’ll be the last one standing
Two hands in the air, I’m a champion
You’ll be looking up at me when it’s over
I live for the battle, I’m a soldier, yeah

I’m a fighter like Rocky
Put you flat on your back like Ali
Yeah, I’m the greatest, I’m stronger
Paid my dues, can’t lose, Imma own ya, ay

I’ve been working my whole life
And now it’s do or die

I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again
I am the champion
You’re gonna know my name
You can’t hurt me now
I can’t feel the pain
I was made for this, yeah, I was born to win
I am the champion

When they write my story
They’re gonna say that I did it for the glory
But don’t think that I did it for the fame, yeah
I did it for the love of the game, yeah
And this is my chance I’m taking
All them old records I’m breaking
All you people watching on the TV
You go ahead and put your bets on me, ay

I’ve been waiting my whole life
To see my name in lights

I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again
I am the champion
You’re gonna know my name
You can’t hurt me now
I can’t feel the pain
I was made for this, yeah, I was born to win
I am the champion, oh

Born champion, Luda
The C is for the courage I possess through the drama
H is for the hurt but it’s all for the honor
A is for my attitude working through the patience
Money comes and goes so the M is for motivation
Gotta stay consistent, the P is to persevere
The I is for integrity, innovative career
The O is optimistic, open and never shut
And the N is necessary ’cause I’m never giving up
See they ask me how I did it, I just did it from the heart
Crushing the competition, been doing it from the start
They say that every champion is all about his principles
Carrie

I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again
I am the champion
You’re gonna know my name
You can’t hurt me now
I can’t feel the pain
I was made for this, yeah, I was born to win
I am the champion

I’m the champion, yeah
Surpassed all rivals
It’s all about who wants it the most (I am the champion)

Fight for what we believe in
That’s what champions are made of

I am the champion

Songwriters: Brett James / Chris De Stefano / Christopher Brian Bridges / Carrie Underwood
The Champion lyrics © Warner/Chappell Music, Inc, Sony/ATV Music Publishing LLC

Champion Featured Image Description:

Two blue boxing gloves standing upright on a white background.