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What Does Braille Have to Do with Glaucoma? My Personal Experience

Editor's note: In January, we celebrate both National Braille Awareness and National Glaucoma Awareness months. Guest writer Jasmyn Polite shares her experience and advice as a person with glaucoma who has learned braille.

Portrait of Jasmyn Polite in a graduation cap and gown

Learning the Importance of Braille

by Jasmyn Polite

I have glaucoma and have progressively lost vision as I have grown older. When I was a young child, I thought that braille didn’t apply to me, and it was too hard to learn; however, that all changed when I started volunteering at my school as a teacher’s aide for the first grade students at the Florida School for the Deaf and Blind in St. Augustine, Florida. Working with the students who were blind was very hard because I didn’t know braille at the time. This ordeal made me feel bad because I didn't feel connected to the blind community or others who may have glaucoma like me. I feel like my school should have taught me braille from elementary to high school because I had a progressive eye condition.

Getting Help with Learning Braille

As a result, over the years, I started asking my friends who were blind to help me learn braille and provide me with materials to practice. I even took a braille class at my school when I entered my senior year. My friends gave me a braille writer, books, paper, and a slate and stylus, another writing device that produces braille. I also received braille books from the National Federation for the Blind, American Action Fund for Blind Children and Adults, and the Iowa Department for the Blind’s Talking Library in Des Moines.

After leaving high school, I decided to increase my skills by taking braille through the Iowa Department for the Blind, Hadley Institute for the Blind and Visually Impaired, and by getting help from my mentor, Ted Hart, from the National Federation for the Blind.

Advice for People Losing Vision

Given this experience, my advice for people losing vision is to be prepared for what life may throw at you and be open to learning new things. I’m not afraid if I lose my vision from glaucoma because I know how to use braille and also learned many other life skills at the Iowa Department for the Blind’s Orientation Center where I was taught skills under the blindfold. I feel it is important to plan and prepare for the future. In my case, learning braille and blind skills will help me to cope with vision loss from glaucoma.

Closeup of student's hands checking the braille she is embossing

Why Should Individuals with Glaucoma Who Have Low Vision Learn Braille?

In my personal experience, it is important for individuals who have glaucoma and have experienced vision loss to learn braille. It is important to be prepared. Although your eye pressures may be controlled with eye drops or surgeries for a long time, glaucoma can still be progressive, and treatment may not work. That’s why I think it is important to learn braille and other independent living skills. Yes, you might be ok right now, but what if your eyesight deteriorates? We all must think of what the future will hold for us and be ready for the challenges that will come our way. (Note: Glaucoma is a group of eye diseases that can lead to blindness by damaging the optic nerve. The eye continuously produces a fluid, called the aqueous, that must drain from the eye to maintain healthy eye pressure. Glaucoma results in peripheral or side vision loss initially, and the effect can be like looking through a tube or into a narrow tunnel. This "tunnel vision" effect makes it difficult to walk without bumping into objects that are off to the side, near the head, or at foot level.)

Ways Learning Braille Can Help with Living with Glaucoma

Braille can help people of all ages, including older people with glaucoma. Magnifiers and large print help with reading and school work, but even with magnification, reading may be difficult. Audio is another learning tool but doesn't offer the experience of touch. I feel there is nothing better than touching a book and experiencing it. Those who rely on audio all the time may not be able to accomplish other tasks. Braille can be helpful in many ways: labeling items, reading, making notes, etc. Simply put, learning braille increases your options in life!

Helpful Information

Patients Guide to Living with Glaucoma

Joe Lovett and Glaucoma

Four Misconceptions to Learning and Reading Braille


Topics:
Glaucoma
Independence
Low Vision
Personal Reflections
Reading

Why I Resisted Learning Braille

Hand moving over text in braille

Editor's note: To celebrate the life of Louis Braille (1809-1852), who made reading and writing possible for people who are blind, we’d like to acknowledge his young entrepreneurial skill that changed "night writing" into a code of dots we know today as braille. VisionAware peer advisor Maribel Steel, shares an excerpt from her unpublished memoir. She reflects on her teen years when her sight mysteriously worsened and how facing the question, "to braille or not to braille," was met with personal uncertainty.

Physical Changes

As a shy adolescent, I harboured a yearning to be "normal" like the other girls at school. But my body began changing in frightening ways as if I was trading skins with a chameleon. My childhood, which once had been predictable and happy, now threw me into a state of complete uncertainty. I couldn’t understand how it was possible for my physical image to change. It seemed that puberty had swallowed up my young identity and transformed me into a new spotty alien I hardly recognized. Who was that creature staring back at me in the mirror?

Trying to Hide

In my growing teenage restlessness, I was having difficulty seeing the blackboard at school. I didn’t want to mention my predicament to anyone in my peer group for fear of being ridiculed; I wanted to remain inconspicuous, except this was already made impossible by having an unusual name for an "aussie"—with the girls calling me everything from Arabella, Annabelle, and Marylou to Marigold and Tinkerbell!

It was easier to contain my feelings of doubt by ignoring the dimming of objects and the blurring of words in my school books. I blamed all my physical changes on puberty and wrestled with all the discomfort growing underneath my skin. So, my reluctance to sport a new image I didn’t want to wear continued to grow.

The passage between two states of seeing often confused my family as my vision varied between clarity and blurriness, between seeing on some days and not seeing on others. I drifted between needing help and wanting independence. I felt betwixt and between being surprisingly normal and painfully different. Even with all this oddness, I never suspected what was really going on within the thin layers of my retinas.

The Diagnosis

By the time I was 15, the onset of a mysterious loss of sight prompted my parents to seek a medical diagnosis. After visiting 17 ophthalmologists and other medical specialists, my parents persuaded me to undergo tedious tests of all kinds. During a prolonged stay in the hospital, my family learned of my pending blindness—I had an incurable eye disease, retinitis pigmentosa (RP).

woman using older model video magnifier

Becoming Resourceful

It became a time of adopting new skills in order to function in a sighted classroom. I used handheld magnifiers to read textbooks and a tape recorder accompanied me to various lessons. I copied the classroom notes using large pads of writing paper with a dark black ink pen in order to make them legible. In the evenings, I spent hours meticulously re-writing the same work as neatly as possible into my homework book for the teacher to mark the next day. Sometimes, my mother sat by my side and colored in those parts of my work I couldn’t see, adding her artistic flair to brighten up the pages as well as lighten our hearts. Then came the question.

To Braille or Not To Braille?

I came home from school on one particular day when my mother presented me with a huge sketch pad. "Look inside," she smiled, "I’ve been busy all day creating a surprise for you."

As I turned the pages as cautiously as if opening a precious archive, a series of rectangular boxes with purple circles in different spacings caught my eye.

"It’s the braille alphabet," said my mother proudly. "I’ve copied out all the letters in large format so that you can see to learn them."

I was more taken by the beautiful symmetry of her work, the precise lines, the exact gaps between boxes, the fullness of six circles in different formations more than I could accept the concept of learning braille.

"But, Mom. I don’t want to learn braille. I’m not blind."

"Darling, you don’t have to decide now," she said. "Maybe just keep it in your school bag."

Learn braille? It was not in my wildest dreams to accept that one day I might not be able to see.

man and woman trying to move a very large rock

The Lesson

Looking back now, I realize that the truth for me was too hard to face. I didn’t want to accept change, not even with my mother’s love and patience to guide me on the path of uncertainty. I stuck to my determined nature to persist in other ways and fortunately, having learned to touch-type, it has served me well in today’s age of assistive computers. But I can’t help wondering how much easier life would have been to put away my fear and take up reading braille in the early years of my sight loss. But, as the saying goes, it’s never too late to try!

Would you like to share your experience of learning braille? Did you feel it was a challenge? Did it open up your world? Please leave a comment here.

Learn More About Braille

Four Misconceptions to Learning and Reading Braille

An Overview of Braille

All About Braille: Six Dots, Four Perspectives

AFB Celebrates 200 Years of Braille!


Topics:
Independence
Low Vision
Personal Reflections
Reading
Social Life and Recreation

Eighteen Sayings to Focus on Renewal with Vision Loss

Maribel smiling and holding up sunflower

As we begin a new year, some people may find themselves suddenly challenged by a new detour—having to navigate a life with low vision. I often find I have to renew my focus at times of great challenge and being legally blind with retinitis pigmentosa (RP), I sometimes think my parents should have given me "Patience" as my middle name because it certainly doesn’t come easily on those days when a situation can throw me off track.

However, I have discovered the inspiring power of words to influence my heart, emotions, and my way of thinking when I take time to clearly reflect on a situation—a solution can often arise from these quiet times of contemplation. Here are 18 sayings to renew your focus anytime you need that little something to help you over a challenge this year.

Stepping Out

woman walking purposely

18. "The new year stands before us, like a chapter in a book, waiting to be written. We can help write that story by setting goals." —Melody Beattie

17. "Courage is the most important of all the virtues because without courage, you can't practice any other virtue consistently." —Maya Angelou

16. "Though nobody can go back and make a new beginning... anyone can start over and make a new ending." —Chico Xavier

15. "Don't be afraid of your fears. They're not there to scare you. They're there to let you know that something is worth it." —Joy Bell

14. "Progress always involves risks. You can’t take second base AND keep your foot on first." —James Bryan Conant

Inspire Hope

bed of pink tulips

13. "If you want to be happy, set a goal that commands your thoughts, liberates your energy and inspires your hopes." —Andrew Carnegie

12. "Some succeed because they are destined to but most succeed because they are determined to." —Anonymous

11. "Only in the darkness can you see the stars." —Martin Luther King

10. "Life is not about waiting for the storm to pass... it's about learning to dance in the rain." —Vivian Greene

9. "Not all of us can do great things. But we can do small things with great love." —Mother Teresa

Always Possible

child in maze

8. "Possibility is a state of being. Be about your life's big ideas." —Anonymous

7. "Use this day to do something daring, extraordinary and unlike yourself. Take a chance and shape a different pattern in your personal cloud of probability." —Vera Nazarian

6. "Getting it ‘perfect’ is not an act of artisanship because the true artisan remains in a state of perfecting." —Sina Mossayeb

5. "Faith is the daring of the soul to go farther than it can see." —Anon

4. "The world is not moved only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of each honest worker." —Helen Keller

3. "Let the beauty of what you love be what you do." —Rumi

2. "When you become comfortable with uncertainty, infinite possibilities open up in your life." —Eckhart Tolle.

1. "But what if I fail of my purpose here? It is but to keep the nerves at strain, to dry one's eyes and laugh at a fall, and, baffled, get up and begin again." —Robert Browning

Bonus Quote: "Dare to dream, for dreamers see tomorrow; dare to make a wish, for wishing makes way for hope, and hope is what keeps us all alive. Dare to reach out for the things no one else can see." —Ron Christian

Jump of happiness people on blue sky and green grass background

Further Inspiring Readings

Sixteen Quotes to Keep Your Gaze on the Possible

Beginning On a Positive Quote

To Love This Life: Quotations by Helen Keller

I'm Thinkin' About Good Intentions

Do you have a favorite quote or saying that brings you a sense of empowerment when facing a challenging situation? Please let us know and we can add it to our collection.


Topic:
Personal Reflections

Resilient People Live Well with Vision Loss

Editor's note: As we approach the New Year, it is time to pause and reflect on what it means to "live well" and take charge of one's life. VisionAware peer advisor Audrey Demmitt eloquently speaks to this in our year-end post.

Recently, I attended an event in my community, and while I was milling around with my guide dog, a gentleman stopped me and said, "Wow! I am so impressed that you are here. How do you do it, I mean—I don’t think I could do it." I have had many similar encounters with people who fear blindness and don’t believe they could deal with it. My response is always the same: "Oh yes, you could if you had to. You already have within you what it takes to adjust to something like this… you just don’t know it."

Audrey and her instructor talking before Audrey started her climb up the mountain

I learned that about myself. There was a certain something already in me that made it possible to adapt to my disability. Of course, I still had to go through the painful process of grief and find a new normal in life, but I made it through. I do not consider myself extraordinary or inspirational, nor is my challenge any worse than another’s. I am just one more human being trying to live my life the best I can.

What Is Resilience?

Helen Keller once said, "Although the world is full of adversity, it is full also of the overcoming of it." In the aftermath of great tragedies and traumas in peoples’ lives, we often hear stories of overcoming and triumph. What is it in the human spirit that allows this to happen? I believe it is resilience—the capacity to adapt and recover from stressful events. Resilience is the ability to bounce back or roll with the punches in the face of adversity. It is the inner strength and emotional toughness that allows us to overcome life’s challenges. We all have this capacity to one degree or another, and we can develop more of it as needed. We will all face adversity, and the question to ask yourself is "How will I overcome it?"

How Can We Become More Resilient?

We grow more resilient by going through tough times and learning from those periods in our lives. Life will give you plenty of opportunities to develop resilience. It is full of loss, trauma, illness, and other stressful events. We can intentionally use healthy coping strategies such as a positive attitude, self-care techniques, and problem-solving skills to weather adversity and become more resilient. Here are some truths I learned about resilience while going blind:

  1. You already have within you what you need to survive and live well with blindness. Human beings are incredibly adaptable—it is in our DNA. All we need to do is exercise this capacity, reach for it, and call it into action! My son recently gave me a bracelet that reads, "She believed she could, so she did!" You must first believe in your ability to handle adversity.

  2. The fear of blindness was worse than the blindness itself. At first, I was overwhelmed and paralyzed by the thought of blindness, afraid of how it would change me and my life. It turns out, blindness is not a death sentence, and I have learned how to live with it. You can't change the fact that adversity happens, but you can change how you interpret and respond to it.

  3. Connections with friends and family are my most valuable resource. It was through my supportive family, devoted friends, and relationships with others experiencing vision loss that I mounted the strength and courage to accept blindness and move on. Many studies show the primary factor in resilience is having caring and supportive relationships within and outside the family.

  4. The best way to face adversity is with a no-nonsense, problem-solving approach. It was time to stop being emotional and get to the business of learning to live with blindness. I needed to find resources, learn new skills, and advocate for myself. This meant getting counseling, vision rehabilitation services, and attending a support group. Maybe for you, this means it is time to embrace the white cane or get a guide dog! You must take action steps.

  5. Adversity strengthens us and can bring many positive things into our lives. I believe I am a stronger, more resilient person now. Living with blindness has taught me better organizational and problem-solving skills. I am certain my marriage and family are stronger because of my blindness, as it affects the whole family! And my children have developed some wonderful qualities by growing up in our house: compassion, helpfulness, and appreciation of diverse abilities.

  6. Humor is great therapy! Many funny, albeit awkward, moments happen because of my vision loss. I have learned to laugh at these moments and have developed a sense of humor to smooth the way. It’s important to keep a sense of humor.

  7. Positive thinking will bolster you during crisis. This is a learned skill for most of us. Negative emotions are rooted in negative thinking. Often, we tend to blow things out of proportion and think of only the worst scenarios. We tell ourselves, "This crisis will never end..." "It’s happening to me because I am unlucky..." and "This event will ruin my life." We can learn to reframe our circumstances and challenge distorted thinking. I am a born pessimist turned optimist through practicing positivity.

  8. Accept that change is a part of living. Certain goals may no longer be attainable because of adverse life events. Accepting circumstances that cannot be changed can help you focus on circumstances that you can alter. You may need to re-invent yourself, re-imagine your dreams, and re-define goals. As Nike says, just do it, get on with putting the pieces back together! With change comes opportunity.

  9. Taking care of yourself builds resilience. Pay attention to your own needs and feelings while going through adversity. Engage in activities that you enjoy and find relaxing. Exercise regularly, learn to manage stress, and eat a healthy diet. Taking care of yourself helps to keep your mind and body primed to deal with situations that require resilience.

If you are experiencing a new diagnosis of vision loss, don’t despair! You can live well with visual impairment. In the beloved book, Winnie the Pooh by A.A. Milne, Christopher Robin tells Pooh: "You are braver than you believe, stronger than you seem, and smarter than you think."

This is true of all of us.

At some point, I decided if I had to live with blindness then I would do it well! I can honestly say I am in a good place, and my life is full, though it is different than I imagined. Each day brings moments in which I know I am happy. What skills and strengths do you already have to cope with vision loss? What can you do to become more resilient? What have you learned about yourself during times of adversity? Let’s talk about it in the comments below.


Topic:
Personal Reflections

Dave Steele Performs at the Manchester Cathedral

By Michael D Beckwith (Manchester Cathedral) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons A view of the nave inside Manchester Cathedral

Caption: Nave in Manchester Cathedral, England by Michael D. Beckwith [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

Editor's Note: During this time of holiday celebrations, Dave Steele brings us his poignant performance of his poetry reading at the Manchester Cathedral in England.

Performance at the Manchester Cathedral

By Dave Steele

I was recently invited to speak at an event by a local sight loss charity. I have spoken in front of large crowds for many years, but as soon as I was invited to attend this one, I knew it would be special.

Not only was it for an important celebration, it was also in a special place close to my heart. Henshaws Society for Blind People is a charity supporting people who live with sight loss and a whole range of disabilities across the northwest of England. They are based in my hometown of Manchester, and this year they are celebrating 180 years of making a real difference in people's lives. On December 2nd, they were to hold their annual Christmas Carols by candlelight service in the stunning setting of Manchester Cathedral, and as part of an evening, which included visually impaired performers and local musicians, I would be reciting poetry from my books, "Stand By Me RP" volumes one and two.

Dave Steele holding his book, Stand with Me RP

Performing Live

I’ve recited my poetry to people all over the world online, but it’s rare that I do it live in front of an audience. I receive messages every day telling me of the impact my words have made in people’s lives and the emotions that are created by my message in verse but rarely do I get the opportunity to witness the impact first hand.

On the night of the performance, I sat in my seat holding tightly to my wife’s hand as I desperately tried to swallow my nerves. The Cathedral was packed to the rafters with over 600 people enjoying their first feeling of Yuletide festivities. As the time for me to speak edged closer, I remembered everything I’d achieved to bring me to this point. I reminded myself of my mission to dedicate my life to helping others who struggle to come to terms with vision loss.

Reading a Poem That Means the World to Me

When I was introduced by the Dean of the Cathedral, I clicked into autopilot. I took my time with my words and, as I used my little remaining vision to look at my audience, I soaked in every second to store in my memory bank for future days when the haze consumes my eyes. By the time I’d finished reciting my first poem entitled "The Stranger," I felt in command and at ease. Although I knew I would be emotional for my final poem, I was reading one of my favorites from my second book entitled "Shift This Cloud." This is a poem I’d written for my 4-year-old son, Austin, who due to the particular type of Retinitis Pigmentosa (RP) I have, stands a one in two chance of developing it when he’s older. This poem means the world to me—so much so that I’ve had a couple of lines from it tattooed on my arm.

As I began to read and the words started to flow from my heart and soul, I watched something that was truly incredible to me. I saw strangers with tears in their eyes; I saw people I’d never met reliving their fears through my words; men and women who knew little of sight loss placing themselves in my shoes feeling every pain of guilt I carry and every ounce of strength I use to show my family all that you can achieve despite living with an invisible disability. I was holding it all together until I spoke those words that are inked on my skin. "My son be proud, we’ll shift this cloud and dance in heavy rain. I’ll show you all that’s possible, strong heart and long white cane." As the words echoed around the Cathedral, I momentarily glanced at my wife and caught her look of total pride as the tears rolled down her cheeks. Instantly my eyes filled and a lump appeared in my throat. I stumbled my words, but it only added to the emotion of my performance. As I walked the short distance back to my seat, the applause filled my ear, and I knew that tonight would stay with me forever.

Transcript and Description of Dave Steele’s Poetry Reading at Manchester Cathedral

Video

Video of Dave Steele Poetry Reading at Manchester Cathedral

Transcript

(Description: Dave walks onto stage with his white dog while the audience applauds.)

Dave: Merry Christmas!

Audience: Merry Christmas!

Dave: We start here today beginning the festivities and what a brilliant way to start off. I want to say a few words I’ve written down here. You know, I’ve been all over the world, but this is my hometown so it means much more doing it for you guys. Music and poetry have a unique way of telling a story unlike no other. It can heal the heart and touch the soul like nothing else in this life.

When I began to lose my sight just over three years ago, I lost my mobility, my independence, and my confidence. But the biggest thing retinitis pigmentosa took from me was my purpose.

But as I began to adapt to my new life with this ever shrinking tunneled sight, I discovered a unique way to regain everything I’d lost by telling my story through verse. My poetry has since been used by visually impaired people around the world to help them realize that they aren’t alone with the things they go through whilst also being a tool for them to communicate to their loved ones just how they feel when they struggle to find the words themselves.

I now dedicate my life to helping others to come to terms with their own journey into blindness. I’d like to read to you tonight two poems from my books Stand By Me RP, volumes one and two. The first one I want to read to you is called "The Stranger."

The Stranger by Dave Steele

Today a stranger asked me,
What has blindness done to me?
Has it limited the plans I've made
or the things I hoped would be?
Has it forced me now to settle
on a life that's second best?
Has it made me give up lots of things
since I failed this blindness test?
Do I still have aspirations,
special places dream to go?
Is there any point in beauty
if the eyes won't work to show?
But my answer came so quickly,
not a thought considered twice,
I am happy for this blindness
for the way it's changed my life.
It has taught me what's important.
Shown me who my real friends are,
and I wouldn't change the things I've learned
just to get back in my car.
I have met amazing people
since this RP took my sight.
We share in common struggles
joint together through this plight.
Though my retina's are dying,
my minds vision has increased.
Each day I'm making memories
for long after vision ceased.
So never offer pity
for the broken sense I've lost
cause I feel I have gained more
than the price this blindness cost.

Thank you.

(Description:Loud applause)

Dave: So, my poems, which, well before I started writing poetry, I started losing my sight three years ago, I’ve never been a poet in my life. And when I started losing my sight, it was my way of opening up and opening my heart and being able to still help other. And it’s just about three years now since I was diagnosed with RP; I’ve now written over 500 poems in about of three years. And most times when I read them, I don’t know where the words come from. And I’ve never written a poem that’s taken longer than 20 minutes because I believe that if it doesn’t come from the heart, it’s not worth writing. Which leads me to this poem. I’d like to finish with this one, and this is a very (someone coughs in audience) emotional poem for me. At the time I was diagnosed with retinitis pigmentosa like I have, you know at the moment, it’s what they call a vision disability. So to look at me, you probably wouldn’t know that I have vision impairment. I cannot see out of the left eye now, and I have five degrees vision in my right eye, which means it’s like looking though a straw basically. But the hardest part of having RP is the hereditary side of things because there’s a one in six chance that my children will develop it, and there is no way against it. There’s no treatment or cure. This poem I wrote when I was finishing up my second book. When I was finishing up my second book, I wrote this, and I thought I don’t need to go in there, and I stopped myself—Austin, who's four years old. And the fears I have and the guilt I carry for him but also how I dedicate my life now to showing him that if blindness does affect him when he’s older that he can do amazing things and obviously life after that. So this one’s called "Shift This Cloud."

Shift This Cloud by Dave Steele

How do I break the news to what I may have done to you?
Won't know for sure,
but doctors say the odds are one in two.
I look in to your eyes
and watch for signs
I hope aren't there.
Pray this RP
will end in me,
no faulty gene is shared.
This tunneled world I live in,
hope one day won't be your view.
Don't follow in my steps or place foot inside my shoe.
The battle for acceptance
will be just a story told.
With perfect sight,
not hurt by light,
clear vision break the mold.
I carry heavy guilt
through sleepless nights and secret tears.
I wait to know the answer,
ticking clock of RP's fears.
But if in future blindness
does come knocking at your door,
I'll lead you by example,
show that life is so much more.
My son be proud
we'll shift this cloud and dance in heavy rain.
I'll show you all that's possible
strong heart and long white cane.

(Description: pauses. Under breath: "This is getting hard.")

Four words that travel round the world. Sorry, I got lost there for a second…

With poetry raise awareness,
this will be my legacy.
Four words that travel round the world,
my "Stand By Me RP."
So years from now,
when you're fully grown,
if blindness burden shared,
just look at what your Dad’s achieved,
so you'll be more prepared.

(Description: applause and cheers from audience. Dave walks off the stage.)

Additional Information

Read about Dave's books.

Raising Awareness About Living with Low Vision Through Poetry


Topics:
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Low Vision
Personal Reflections
Retinitis Pigmentosa
Social Life and Recreation

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