Doctor, I’m Going Blind. Why Won’t You Talk To Me? | Eleanor Lew

I wish my doctors were more like my nephew. I trust and admire them. But many doctors are at a loss to convey their shared feelings with my pain. Unfortunately, many are also unable to express empathy in other ways.

This became apparent most recently when I went to see my eye doctor after noticing a sliver of missing vision in my left eye, my “good” eye.

I know that my retina specialist is both an excellent doctor and a compassionate person. So I do my best to avoid frightening him. I break the news to him gently, as he is examining my “bad” eye.

“I think I’ve lost a little vision in my good eye, too,” I tell him.

He switches to look into my “good” eye and mutters, “It’s the degenerative myopia stuff.”

Then he gives me my regular injection of medication to stop the bleeding in my “bad” eye and skitters out of the room so fast that he leaves his physician assistant and me spinning.

Wow, I scared him, I think to myself. He didn’t know what to say to me.

Meanwhile, my body feels like it is going into shock because of the abruptness with which my doctor left me.

I know my doctor is an empathetic man. I can only suppose that what he saw for the first time in my “good” eye overwhelms his kind heart. My doctor can do something to stop the bleeding in the back of my “bad” eye. But he cannot do anything for the problem in my “good” eye, because I have degenerative myopia, a hereditary condition caused by two recessive genes.

There is no cure or treatment for my degenerative myopia. A few years ago, sight in my right eye, my “bad” eye, vanished in a second. Now I worry that the same will happen in the other. I need my doctor to explain. I want to say to him – What’s happening, doc? Is there something I can do so it doesn’t get worse? Not knowing is stressful. Please don’t leave me in the dark.

But I am overwhelmed, too. When I first started having vision problems, I was given a diagnosis of wet macular degeneration. I religiously took a nutritional supplement called AREDS 2, which a major study from the National Eye Institute had shown could slow the progression of the disease. It was only when I went online to research degenerative myopia that I learned something that my doctors did not tell me. The kind of wet macular degeneration that I have, caused by my degenerative myopia, is different from the far more common age-related macular degeneration that afflicts so many older adults. AREDS 2 would not do anything to preserve my vision.

Members of the low vision support group that I facilitate tell me they have had similar experiences with doctors. They complain that doctors sometimes don’t explain what’s going on with their eyes and avoid giving them bad news.

A member once told her doctor about our low vision support group, and she was surprised to hear him complain. “Why is it that some of my patients seem ignorant about their eye condition?” Doctor, doctor, she thought, why are you asking me? Aren’t you the one who is supposed to do the explaining? But it’s more than just lack of information.

Nature, life experience or both endow some doctors with excellent bedside manners. Others, however, need help. In recent years, some medical schools, like Columbia and Duke, and hospitals, like Massachusetts General, have begun to train doctors in the art of empathy after evidence-based research demonstrated its power to improve patient outcomes and reduce doctor errors, malpractice suits and physician burnout. Especially noteworthy is that training doctors in empathy produces happier doctors.

Sadly, many doctors remain empathy illiterate. The unfortunate consequence is that some doctors can be excessively blunt, or, in my case, saying nothing at all. Either can result in confusion and suffering.

For example, a close friend who fainted in a restaurant woke up in a hospital and was abruptly told by an oncologist that she had lung cancer and only three months to live. The doctor told her she needed to make a will, pack her clothes and move into the nearest hospice. “It was harsh,” my friend said. Ten months later she is still alive.

I know what would work for me. All my doctor has to say is: I’m so sorry, Eleanor, that this is happening. Yes, I do see that there is some slight vision loss in your good eye. And this time the culprit is the degenerative myopia. You must have been terrified when you noticed it. The vision loss is still relatively minor so let’s keep an eye on it. If you see it getting worse, make sure you call me immediately.

Maybe my doctor wasn’t scared. Maybe powering through 40 to 65 patients a day is so exhausting that he cannot pause to muster the words I want to hear. But it would take only 20 seconds to say those empathetic words. Empathy heals, and it works. My words are making me feel better already.

This article was originally published in the New York Times on January 23, 2018.

A photo of me and my Neuro-ophthalmologist, Standing in his office
Dr. Kubis and I

GGB Note: Unfortunately, I have heard many stories like this from people in the blind community. A doctor who is too blunt, rushed, or rudely brief, (lacking empathy) can leave a traumatic lasting impression on a  patient. When the patient is worried or given some bad news, a little empathy goes a long way! My Neuro-ophthalmologist, Dr. Ken Kubis, Is one of the best doctors I’ve ever had. Sure, his knowledge and medical degrees are impressive, but his chair side manner is absolutely amazing! He answered my questions, explained every test, fought hard for a diagnosis, and kept me mentally afloat when I felt I was drowning in the sea of vision loss. He Is an extremely busy doctor and surgeon, but he knows the value of empathy. And, he is also one of GGB’s biggest fans!!

Related reading: Taking Time for Empathy

5 Benefits Of Sharing Your Sight Loss Story

So, you’re legally blind. Were you born blind or did you lose sight at a later age? Is it a big deal in your life, or Is it easy to ignore? Has sight loss made you a stronger person? Have you broken down barriers so you can experience life on your terms? Have you been open about your sight loss story? Even if other people don’t have your specific type of sight loss, chances are they might relate in other ways. I have lived with Lebers Hereditary Optic Neuropathy (LHON) for 4 1/2 years, and through my blogging, podcasting, and speaking, I talk about my sight loss all the time. This may come as a shock to some of you, but I love to talk. I know. Hard to believe, but I also love to listen to other people’s stories. So why not share yours?  Here are 5 benefits of telling your story, and how they might Impact your life.

1. Your Story Educates And Increases Awareness.

How much did you know about your type of sight loss before you were diagnosed with it? I knew nothing about LHON or Mitochondrial disease before my Neuro-ophthalmologist dropped the bomb and said there are no current treatments or cures. Permanent sight loss from LHON would be something I had to live with for the rest of my life. If I didn’t know anything about LHON, It was likely that my family and friends knew nothing as well. Now, my friends and family are well aware of my condition. For the most part, they understand what works and what doesn’t work for me. The more we share our stories – the more educated people will be about sight loss. 

2. Your Story Will Spark Connection With Others.

When you’re open about your sight loss, you’ll discover somebody in your circle knows somebody who is living with the same or similar condition. Suddenly, a connection is made and you no longer are facing sight loss by yourself. You are part of a community, and there is strength in numbers. And the more you share your story in person, on the phone or online, the more likely it is that you will find other people who do understand exactly what you’re going through.

3. Your Story Is Worth Writing About.

When you’re first diagnosed, you may feel like you’re all alone. Nobody else “gets it”, so why bother trying to talk about it? It can be difficult to talk about sight loss. But getting the words out creates room in your pretty little head to sort through the realities of your life living with sight loss. By writing about your day or an experience, you will spend less time dwelling, and more time doing!

4. Your Story Removes The Elephant In The Room.

I suspect many of the people you hang out with know you are living with sight loss, but can be a difficult topic for them to bring up in conversation. They likely want to know more about the vision loss and how you’re coping with it, but they’re afraid to ask. So,, ease the anxiety and be the first to talk about it. This allows you to control the conversation and answer any questions. Keep the discussions short, sweet, and informative. Talking on and on about your sight loss may give it more attention than it deserves. Talk about the elephant, then quickly shove it out the door.

5. Your Story Paves The Way For Others.

I found that one of the best things about blogging is connecting with my followers and fellow bloggers in the blind community. I am a total open book about my unexpected life, and I think people feel comfortable about sharing their tales of sight loss with me. In sharing my stories, I have the amazing opportunity to hear other people’s stories, listen to what they have gone through, and learn from what they have to say. We must remember that we aren’t alone in our stories of struggles, successes, and sight loss.

 

I'm So Lucky That I Don't Look Blind | Georgie Bullen

What she said. A different perspective. One that I can relate to. ~ GGB

As much as we like to think that we don’t make any judgements of people before we know them, my experience is that many do unfortunately judge a book by its cover. I am registered as blind, but physically appear to be fully sighted (I can make eye contact, I wear make-up and my eyes and face appear completely normal). I use a cane when I’m in places I’m not familiar with (especially if I don’t have a friend’s arm to grab), or if my eyes are tired, but a lot of the time I can get around fairly well without anything (admittedly, my ‘fairly well’ would be someone else’s ‘she gets around like a bumper car’).

When I’m walking without a cane, or just on my partner’s or friend’s arm, I get treated just like anyone else – if I smile at a stranger, they tend to smile back and if I’m just keeping myself to myself, I can go around un-noticed. However, if I’m using my cane it is as if I have a sudden spotlight shining on me; I find myself being stared at and will often find when people speak to me, they slow down their speech, or (my favourite) some tilt their heads and give me a sympathetic ‘ah bless’ smile. It’s almost like I have a big sign over my head with my IQ on it and somehow, too many around me, when I get my cane out the points rapidly fall away.

In many respects I am lucky that even when I use my cane, I can still make eye contact and, in every other way I appear fully sighted, I find that I have a much easier time of making strangers comfortable with me and my IQ sign can start to creep back up quite quickly.

However, if I’m with a friend who looks blind, regardless of whether I myself am using a cane or not, most of the general public will automatically address me instead of my friend; ‘Does she need a seat?’, ‘Does he want some help?’. It often makes us laugh as it is generally meant well, but actually ‘he’ and ‘she’ can hear you perfectly fine if you just say ‘Excuse me, do you need any assistance?’. It can amuse me when someone speaks to me like I’m 10 years old when I use my cane, but I’m lucky in that I can put my cane away and that game is over. But, if you’re someone who also looks visually impaired you can really struggle to find anyone who will speak to you as an adult. When I’m with a friend of mine who has almost no sight at all, who can’t make eye contact, wears sunglasses and has a giant white cane (he’s well over 6 ft tall so his cane is nearly my height!), I notice some people talk to him like he’s (for lack of a better word) an idiot; ‘Oh, you’re going on the train? Wow!’ or, ‘You do sport when you can’t see? AMAZING!’ – my friend has a PHD from Cambridge in something so complicated and scientific, that I would embarrass myself if I even tried to explain it!.. Oh, and English isn’t even his first language.

That spotlight that appears to shine on me seems to be 10x brighter if you look visually impaired, and you can’t switch it off like I can by simply putting my cane away. Admittedly there are some small issues being visually impaired and not appearing so…on occasion some especially rude people will call you a liar and have a go at you for ‘pretending to be blind’, or many simply assume it can’t be ‘that bad’ so they don’t make allowances for you. But considering how those who are obviously visually impaired are regularly treated, it’s not just a crass title, I think I am genuinely lucky that I don’t look blind.

I’m sure many of you reading this are sensitive enough already to realise how to act with people with impairments – and I really want to be clear that it would probably feel equally bad if everyone were to purposefully ignore someone and look the other way – but if you are wondering what the answer is, it is simply education! If you’re curious about someone, then why not just ask them a question – for example ‘hi there, I couldn’t help but notice that you’re visually impaired, do you mind me asking you about your sight?’ – that may sound scary and more personal than us Brits like to get, but whenever anyone has taken that approach with me we end up having a really good chat, and I feel sure that they go away feeling more educated and more confident for the next time they meet someone with a similar condition. I know it is a bold step for many, but don’t be put off by doing this in a public place, like on the train, by you showing others that you’re comfortable enough to ask questions helps to put them at ease too!

Headshot of Georgie Bullen
Photo From Original Article

Georgie Bullen FRSA is a GB Goalball Paralympian and the Director of Team Insight– a team building and visual impairment awareness training events organization. Find Georgie on Twitter!

This article was originally published on Linkedin / January 25, 2018

You may also like to read “Fueling For Success” by Georgie Bullen 

How To Take A Group Exercise Class With Low Or No Vision | Mel Scott

When friends or acquaintances, who have low or no vision, find out I am a group fitness instructor, I get asked the same question all the time. “Hey, I want to try a group class at the gym, do you think I can do it? How should I go about it?”. It’s not a simple answer. I usually need to ask them a few questions, such as, how much vision do you have?, What kind of class are you thinking of trying?, Have you done that kind of workout before?, Do you have friends that take the class?, Are you willing to talk to the instructor before hand?, etc., etc. With their answers, plus my experience teaching to the blind – Ok. Go ahead and say it, it’s the blind leading the blind!! Yeah Yeah. Like I’ve never heard THAT one before! Anyway, I can usually give them some decent advice. I know that attending a group class can be more frustrating than fun. So, with some advice, I hope you will find, a workout that’s fun and comfortable for someone who is blind. ~ GGB

How To Take A Group Exercise Class With Low Or No Vision | By Mel Scott | Blind Alive

I suppose it is pretty obvious by now that group classes are not my favorite thing. After all, I make audio fitness programs so I can help people avoid group classes. However, I understand that many people with visual impairments do want to benefit from the support and camaraderie that can be found in these settings. They also provide social interaction and they are motivating.

I have attended many group classes over the years. They have been mostly yoga, but I have gone to aerobics, mat Pilates, and body sculpting as well. Here is how I handled them.

First, I spoke to the instructor before class. I explained that I need to be as close to her as possible so that we can easily communicate during class. This may also help if you have enough vision to give you clues as to what is happening. It makes all the difference in the world if you approach the instructor with smiles and confidence. If you exude enthusiasm for his or her class and tell them what their job is where you are concerned, they will feel more relaxed with you. If you come across timid, they will catch that vibe from you and become timid themselves. They want to be told what you need. If you come across confident, it won’t occur to them to tell you “No”.

To tell the truth, fast moving group classes have always been humiliating for me. I don’t like them one bit. It is possible to do it though. Find a teacher who will spend some time with you outside of class so you can learn the moves. If an instructor is truly a devoted teacher, they will enjoy finding a way for you to join the class. I know this may be hard to take, but offering to pay them for some extra time can make all the difference in your success and their attitude. Showing them that you are committed will make them feel more like helping you. Also, a fast moving class requires more attention from the instructor and they will not be able to give u everything you need during class-time — especially if it is a dance aerobics or step aerobics type class. I can pretty much guarantee you will feel lost at least once so if this is embarrassing to you, preparing is the key.

I thoroughly enjoy attending yoga classes. I have had many instructors and all of them have been excited to work with me. Most yoga teachers are open minded and enjoy the challenge. It is better to try a beginner class first because talking and laughter are usually welcome. Make sure to place your mat right in front of or beside the teacher. Ask them to use directional terms like left and right, palms up or down, thumbs up or down. There are a lot of terms that you will need to help them figure out. Asking for clarification in a yoga class is rarely an intrusion. The teacher may find it easier to touch you or have you touch them. If this is a problem for you, you may need to get more creative with your directional terms. Many teachers are quite natural at describing, but  If you find a teacher that just can’t put words to movements, you may have better luck with a different teacher. There are many kinds of yoga, so give another type a try if your first experience turns out not so great.

Mat Pilates is also a slower moving type class. Pilates teachers are often good at describing. Because Pilates movements are often small, the teacher needs to be able to communicate what you are supposed to be feeling inside your body. They will often ask if touching you is okay. Make sure to ask them to tell you before they touch you. Do not hesitate to remind teachers over and over. They will appreciate it if they are good at what they are doing. A good teacher loves to get better at teaching so you can help them.

Many YMCAs or senior centers will have slower more low key classes. Ask as many questions as you can think of before joining. Find out how loud the music will be. Can it be turned down so you can hear well? Can you be assured of a spot near the teacher? Will there be any moving around the room such as walking in circles? Are there any support people in the classes that might be able to give you some extra attention? Most of the time these type facilities are equipped and are happy to work with you. Asking for what you need is key. Asking with a bright and friendly attitude is more likely to help you get your needs met. A curious an upbeat attitude will make them look forward to your participation.

Finally, a person wrote to me last week to tell me that by learning moves from the Eyes-Free Fitness® programs, it  helped her follow along in a group class. You could try learning at home first and then venture out to a group. I have tried to make sure that common exercise terms are used in most of our programs. This may make it easier for you to catch on to the requested move. Also, doing exercises at home will make you more familiar, which will in tern boost your confidence in a public situation.

Group classes can be lots of fun. I encourage you to be bold, ask for what you need with kindness and confidence and chances are good that you will have a positive experience. of course, I’ve got you covered with plenty of home choices if groups are not your thing. Smile.

You can find all of our home workouts on our website.

I am curious to hear about experiences you may have had with group classes. Please consider joining our email list, and tell us your story.

Good health to you,
Mel

A photo of Mel Scott with her sweet dog next to herThis blog was originally published on www.BlindAlive.com on 2/25/2018 by Mel Scott. Mel is the founder and president of BlindAlive,LLC and Eyes-Free Fitness.

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Blind Reflections | Justin Holland

It was just another day on Twitter when Justin Holland decided to search the hashtag, “#LHON”, to see what would pop up. You see, he also has Lebers Hereditary Optic Neuropathy (LHON), just like me. Well, whose tweets do you think popped up? Yep. GGB’s! Of course there were other tweets sprinkled throughout mine, but I pretty much dominated his #LHON search. I know this, because I search #LHON on a regular basis myself.

Justin sent me a message and told me a little about himself – He was diagnosed with LHON 18 months ago, he is a vlogger on YouTube, and he has a serious passion for bodybuilding. At this point, I did what anybody else would do, I grabbed a glass of wine and stalked his Twitter, and zoomed in on his YouTube channel to get an idea of who this guy was. Wait, maybe “stalked” isn’t the right word…umm, let’s say I briefly perused his Twitter page and quickly glanced at his YouTube channel. Hey, it was legit research! Just making sure he was who he said he was…and he is. Justin is a blind bodybuilder who refuses to wallow in self-pity.

I promptly messaged him back which led to an awesome phone conversation. How do 2 people talk about LHON life for over an hour? I have no idea…it just happens! At the end of our conversation, I asked him if he would allow me to share one of his many videos on my blog. A video in which he talks about his diagnosis of LHON and life with vision loss. With his positive attitude and determination, I really wanted to feature him in my Blind Reflections Collection. Luckily, he said yes! If you want to follow Justin and his fitness journey, you will find links to his social media and YouTube channel below the video.

Bodybuilder Goes blind at 20 years old | A Blind Reflection video | By Justin Holland
Follow Justin Holland on YouTube and Social Media:
Justin Holland Fitness on YouTube
Justin Holland Fitness on Twitter and Facebook

So Yeah, That Happened! | The Cat Toy

Picture of Kingston, orange striped cat, And Murphy, black-and-white cat sleeping together on a bedWe adopted two cats just about a year ago, and I absolutely adore them. Their names are Kingston and Murphy. Kingston is the cool, calm, and collected cat, while Murphy is more of a drunk and disorderly cat. They bonded immediately, despite the difference in their personalities.

If you have cats, or any domesticated animals for that matter, they come with some things that need to be done for their care. Things like play with them, give them food and water daily, throw them a few tasty tuna treats every so often, love them, and everybody’s favorite task – clean the litter box, 

Okay, let’s talk about cleaning that box where my cats take bigger shits than my dog ever did! Oooops, I mean, let’s talk about the litter box.

Every day, I scoop, and I scoop, through the sand, like a gold miner looking for that next big gold nugget. When I can feel I’ve got something a little heavy on the scooper… I know I got me a nugget!  Unfortunately, it’s worth nothing – Just the satisfaction of knowing my cats are eating well because they shit like 10 times a day!

Once in a while, the cats shit outside of the litter box, (because they’re big fatty cats and they don’t know when their furry butts are too close to the side). Plop, Plop… right over the edge. Like poop pirates jumping from a burning ship! Usually my daughter will spot the dried-up pirates… but, not today.

I was headed down the hall to tend to the cats’ restroom, when I passed Murphy, playing so…well, drunk and disorderly like. Aww, he’s so cute! I think I’ll throw the toy down the hallway so he can run after it. Hmmm, where is that little stuffed mouse he loves so much? I reached down and picked it up so I could throw it. Oh God. No. Eeww! It was a slightly moist chunk of cat poop! A lone scallywag! I turned and threw it in the litter box. Okay, I’m blind, so I didn’t actually hit the sand, but it hit something…I’ll have the kids look for it later. And poor Murphy, I think he’s still looking for his wee pirate cat toy too!

So Yeah, that happened!

From Passing To Passion – How I Found Strength In The White Cane | Stephanae McCoy

Don’t you just love a good, written from the soul, “white cane” blog? One that honestly tells it like it is? One that you can totally relate to? Yeah, me too!! I recently came across this blog again, and I can truly say, “I can totally relate!” – because I’ve been there. My friend and fellow blogger, Stephanae McCoy, writes about her struggle to accept the white cane. It’s definitely a process. ~ GGB

From Passing To Passion – How I Found Strength In The White Cane | By Stephanae McCoy | Bold Blind Beauty

What bothered me most about my sight loss was my fear of people knowing I couldn’t see. Everywhere I went I felt so vulnerable and isolated not to mention, my anxiety levels rocketed off into the stratosphere.

Each step I took was a step closer to breaking my neck. So what was my solution as my sight kept deteriorating? I faked it of course.

Adjusting to sight loss is a process and everyone who goes through it does so in a different way. I was so used to putting on my professional mask each day. It was important to me for people saw what I wanted them to see—a composed person. Yet after work, and sometimes throughout the day while hiding in a restroom stall, I was a blubbering mess. My life was unraveling.

When I met with a Vocational Rehabilitation Counselor (VRC) to discuss the assistive technology I would need to keep my job, I was stunned when he mentioned the white cane. To determine my needs, I had to answer questions but I never thought the white cane would enter the discussion. For Pete’s sake, I mean I couldn’t see but I wasn’t blind. I had a lot to learn.

“The only person you are fooling is yourself when you pretend you CAN see when you clearly CAN’T.” This comment from the VRC didn’t go over well with me. Even so, I grudgingly took Orientation and Mobility training to learn how to use the white cane. Once my lessons were over the cane went to my closet where it stayed for months.

My eventual acceptance of the white cane came about as I began to accept my sight loss. Meeting and befriending blind people who strongly advocate for the rights of blind persons led me to volunteer for several blind organizations. Becoming a part of the blind community and refocusing my efforts on helping others was the most important piece that ultimately gave me a sense of peace.

I still have days where I don’t feel as secure as I’d like, we all do, but when I come back to my ‘why,’ I can recharge, readjust, and refocus to stoke the fire of my passion. Improving humanity by changing the way we perceive one another is my mission and to achieve it I must continue moving forward and doing so with my white cane. I’ve found that being Bold Blind and Beautiful comes about from living life to the best of my ability.

About Stephanae McCoy

Stephanae McCoy, the founder of Bold Blind Beauty, created “a unique inspirational online community that brings blind and visually impaired women together to celebrate fashion and style. Bold Blind Beauty encourages empowerment and connects sighted and non-sighted people. We invite you to peruse our site to enable your inner fashion sensibilities – and be a bold, blind, and beautiful woman! Be sure to check out her amazing website for more interesting and insightful blogs! 

This blog was originally published on Bold Blind Beauty / October 2017