Are Fireworks Worth My Time – Now That I’m Legally Blind?

After the Fourth of July celebration here in the states, someone said to me, “You know, if I couldn’t see the fireworks show, I probably wouldn’t go. Is it hard for you to sit there while everyone else watches the fireworks?”. I said, “Well, yes and no.” Here’s how I ended up explaining my answer. I’ll try to keep it short. (Yeah right, like THAT’S gonna happen!)

A fireworks show is a visual work of art –  like splashes of glamorous glitter and paint thrown upon a black canvas for all to admire. 

I watched many fireworks shows when I was fully sighted. 50 years worth to be exact. The colors, shapes, and sizes would rarely disappoint as they lit up the sky. But now, all I see are flashes of lights. No colors, no sparkles, no shapes – and if I sit and stare at the sky, and think about what I’m missing, I hear a little voice in my head say, “This isn’t any fun. This blind thing sucks.”. And with every boom, crackle, and sizzle of the night, that pesky little voice becomes louder. Sometimes I do wonder if it’s worth sitting at a fireworks show when I can’t enjoy it the same way as everyone else. So yes, there are moments when it’s hard not being able to physically see the fireworks like I used to.

Fireworks don’t have to be a thing of the past. The colors may fade, but the tradition will last.

I grew up in Coronado, California, a small beach community. The Fourth of July parade, parties, and picnics are annual traditions in the “Crown City”. And of course, there are the celebratory fireworks at night.

When I was very young, my family would grab blankets, give us kids flashlights, and walk 2 blocks to the golf course. Along with the entire town, we would plant ourselves in the same grassy spot every year to watch the fireworks. It was a tradition. I don’t know which was more exciting, the fireworks or staying up way past my bedtime!

As a teenager, it was way more cool to go to the fireworks with my friends. We would (umm, possibly), sneak a few wine coolers into our jackets, grab the blankets, and walk to the usual spot on the golf course. It was a tradition. Well, the wine coolers weren’t an EVERY year thing. I mean, who likes those? Troublemaking teenagers in the 80s, that’s who!

After having my own kids, we would return to Coronado for the 4th of July festivities. And of course end the day by grabbing the blankets, giving the little ones, including a cousin or two, their own flashlights, and walk to the usual spot on the golf course.  I loved watching the kid’s expressions and excitement as they stared up at the sky. Just like I did when I was their age. It was a tradition. And, I let them stay up past their bedtime too.

Fast forward to 2018, and we still go to Coronado for the Fourth of July. My kids are in their late teens and 20s and I’ve been legally blind for 5 years. Even though I can’t see the fireworks anymore, the family grabs blankets as I grab my white cane, and we all walk to the usual spot on the golf course. As the fireworks begin, I may turn towards the sparkling explosions, but I’m not really watching. I am listening. I am listening to the “Ooohs and Ahhs” and the comments made by my family as they watch the show. They announce and describe their favorites as they look at the sky, just like I did in years gone by. They always sound spectacular, and I try to picture them as such. But. You guys. Listening to my kid’s voices filled with excitement and laughter is more magical than the biggest blooming firework I could ever imagine. Mentally visualizing my kids enjoying the moment and building memories of their own fill my heart and soul. It’s a great feeling. So no, it’s not that hard to sit with my family while they watch (and audio describe), the fireworks. It’s still a tradition. It’s just a different tradition for me now.

Let me end with this…

Sometimes it’s not all about me and what I can’t see. (Wait, what? Says who! tee hee!). I’ve kinda had to accept the fact that I have to experience the fireworks and our tradition differently. I know this is a small thing in life – watching fireworks is certainly not a daily struggle for the blind. As with so many other visual situations that arise after vision loss, we have to find ways to deal with it. Whether it’s through a change in one’s mindset or with the use of assistive technology – you know what they say, “when there’s a will there’s a way”. I didn’t choose to become legally blind in a matter of 8 months, but I can choose how I can make my fireworks experience, and Coronado traditions, enjoyable and well worth my time. 

Staying In The Fight For My Life Without Sight.

There’s been a lot of talk about mental health in the news lately. From celebrity deaths to kids who take guns to school with no plans to come out alive. You can’t help but wonder what was going through their minds. How did they get to the point of wanting to end it all? Was life totally unbearable behind closed doors? Did they believe they weren’t good enough and never will be? Were they abused? Were they not able to cope with some sort of chronic illness or unexpected diagnosis? Were they angry? Were they sad? Were they depressed? Were they mad? Perhaps they were so emotionally drained, they felt nothing at all. I suspect no one can truly answer these questions, except for the ones who carry out the act. Unfortunately, suicidal thoughts are out there, we just don’t know about them. And I would bet you don’t know about mine.

Sight loss came into my life when I thought I had my life in order. I was 50 years old, a mother of a 14-year-old and a 19-year-old, super fit, and teaching group fitness classes 5 days a week when my life was turned upside down by Lebers Hereditary Optic Neuropathy (LHON). I became legally blind in a matter of 8 months. I spiraled into an emotional mess and struggled over a life that no longer felt like mine.

I was beyond devastated. I was angry because it was so unfair. I was sad because I was losing a life I was happy with. I was frustrated because I had trouble with almost everything I used to do. I felt hopeless because there was nothing, nothing that I could think of, to hope for. Well, wait, I did have one hope. I hoped my children would be okay without me. Yes, I went there. I went to thoughts of suicide several times in the first year after my diagnosis. I was in such disbelief and I cried more tears In that first year, than I’ve cried in my entire life. Then there was that little voice. My voice in my own head that started rationalizing and debating about my future. I would say, “I could take a bunch of pills, that would be easy. Maybe I’ll get diagnosed with some incurable illness that would end this life and I wouldn’t have to do it myself. Maybe I should wait until the kids are older. They’ll be okay without me, right? right??? How can I be a good mom like this? My eyesight just keeps getting worse. When is it going to stop. Why the hell is this happening to me? Why? Why! I want to know why. I really don’t think I can do this. I don’t want to live this way… I’m not strong enough. This isn’t how life was supposed to go….”.

Like many people who contemplate suicide, I didn’t tell anyone. I stayed on autopilot and kept the secret under lock and key. I didn’t want anyone freaking out over my thoughts. I’d probably deny it all anyway. Would anyone understand how I felt? Would I ever stop feeling this way?

*Sigh.*

Yep, there were some really f’d up days. And there might be more. What is important, however, is that I recognize those days when I’m struggling and stay in the fight. I can’t let my emotions negatively affect how I deal with my disability. If you experience sadness, anger, hopelessness, or any negative emotion about your sight loss more than you would like, then keep reading. I’m going to share some ways to help relieve some of the emotional chaos that comes with a life-changing diagnosis. *GGB Note: These are based on my own personal experience.

IT HELPS TO TALK ABOUT IT

Talking about my overwhelming emotions and thoughts with neutral parties provided relief and prevented me from making what would have been a bad decision.

Support groups can be incredibly helpful. Support groups are a place to feel accepted and understood. When I first started attending a local support group, my attitude was “I don’t belong here!”. I was the youngest one in the group, and they were all, well, old blind people with walkers and white canes. No, this is not for me. Well, what I needed was to find the right group to feel comfortable in, and I eventually did. I don’t attend that same group anymore, but I’m still friends with a few people I met there. I have also found camaraderie in online groups for people living with LHON and various other forms of sight loss. Talking and listening to others has helped me understand more of what I’m going through and that I am not alone.

Individual counseling is another option that can help too. I am all the stronger for working with a therapist because ultimately I just want to be the best version of myself. Therapy helped me to overcome emotional challenges that were weighing me down and holding me back. If you’re feeling hesitant, there is no shame in getting professional help. We all could use some help every now and then. Look for a therapist who specializes in working with people with vision loss or disabilities if possible. You might have to try out more than one therapist. It’s kind of like dating, you may not match with the first person you go out with. Going to counseling on a weekly basis was one of the best things I decided to do for myself after my diagnosis. Reach out or tell someone you think you might need counseling. Chances are, it will be one of the best decisions you’ll ever make.

~ Keep in mind that chronic illness has nothing against you. While it can seem unfair, you weren’t specifically picked to suffer. Some things just happen to us, and there are no explanations as to why. ~
IT HELPS TO STAY IN THE HERE AND NOW

Sometimes I miss the old me. The one who was totally independent. The one who had her, (and everyone else’s), shit together. The one who was 30 lbs. thinner. The one who was fully sighted. Oh sure, I can be constantly upset about not being as organized, not being able to drive, not being a fully sighted mom, and so much more. But where’s that gonna get me? Probably a penthouse suite at the psych hospital! I have put the past in a nice little box, with a ribbon, and put it away. Do I look Inside that little box every so often? Sure. Who doesn’t like to reminisce about the good ‘ol sighted days? I just don’t dwell on it. I’ve learned that It’s in my best interest to focus on making the most of the here and now.

IT HELPS TO STAY CONNECTED

Living with sight loss has made me feel lonely and lost at times. But I know that shouldn’t prevent me from enjoying all that life has to offer. There have been many occasions where I have struggled to participate. Putting away my disability in the real world and keeping an active social life with friends and family takes a lot of emotional energy that I don’t always have.

In the past, I’ve committed to going out for “Girls Night” or attending a friend’s dinner party as part of my social life. Even though I was feeling a bit down and anti-social, I didn’t cancel. And more often than not, I was really glad I went! Pulling up my big girl panties and pushing myself to stay connected with others helps me feel better – more like my old fully sighted self. Being with others gets me thinking about other things and not obsessing about poor me and life sucks. Staying connected and keeping in touch is a bit like eating kale. Just eat that leafy shit, it’s good for you!

AT THE END OF THE DAY

The attitude I have is entirely up to me. I’m leaning towards “feisty and fierce”! While LHON is here to stay, I am stronger than what it’s done to me. I can’t let it impact the decisions I make, how I parent my kids or my future. And yes, sometimes, I still get emotional over all this. But even on the days when it seems my sight loss is winning, ending it all Isn’t part of the plan. A blind life isn’t a bad life, it’s just a different life. There are many ways to help myself (and you), to stay in the fight for a life without sight. ❤

If you or someone you care about is in crisis and needs immediate medical care, call 9-1-1 or go to the emergency room at the nearest hospital OR call 911.

If you feel you need to talk to someone call the National Suicide Prevention Lifeline or send a text to the Crisis Text Hotline.

 

How He Sees – A Sister's Insight Into Her Brother's Sight Loss | Shannon Elliott

    Imagine.

    Imagine living your life normally and then all of a sudden losing your vision. 

    Imagine being 25, living on your own, working at your dream job, being seven hours away from your family and becoming legally blind. 

    Imagine standing two feet away from your mom, dad, brother or sister and not being able to see their face or their smile. 

    A picture of Brandon in at tuxedo and Shannon in a gorgeous Light colored long gown At Brandon's weddingOn March 5, 2016, my brother told me he was having trouble seeing out of his left eye.  As anyone would say, I told him that when he got back home, he needed to go to the eye doctor to get it checked out.  He did exactly that, but unfortunately the eye doctor could not fix his vision like they can do for most of us.  He was referred to many different eye specialists, while also getting multiple tests performed such as an MRI and spinal tap to ensure it was not something else causing his loss of vision.  

    On April 12, 2016, my mom and brother drove to St. Louis to see yet another eye specialist.  While he was there, he had a full day of testing done to try and figure out what was going on.  All of his tests came back normal.  With that being said, this was all leading in one direction; to a very rare disease that does not have a cure yet.  The only way to confirm this disease is through a genetic blood test.  Therefore, on April 12, 2016, they took his blood and from that point forward, we had to wait weeks to get the results back. 

    Those few weeks seemed like years.  The minutes seemed like hours, the headaches lasted for days and the tears did not stop running.  We, as a family, felt helpless.  

    On Tuesday, May 10, 2016, Brandon received a phone call from his neuro-ophthalmologist in St. Louis confirming that he has one of the genes that diagnoses people with Leber’s Hereditary Optic Neuropathy (LHON), which is defined as an inherited form of vision loss.  Although this news was heartbreaking and life changing, at least we now knew what was going on.  The specialist in St. Louis had talked to Brandon about being a part of a trial in Philadelphia to try and find a cure for this disease.  Brandon was all for it and willing to be a part of it, until we received that phone call stating he did indeed have the disease, but did not have the mutation that the trial was testing for.   

    Anyone who knows Brandon, knows how mentally strong he is.  Brandon graduated in 2013 from Murray State University, where he pursued his life-long dream of playing Division I baseball while getting his Bachelor’s degree in Business Administration.  He received a position at Sportable Scoreboards in Murray, Kentucky upon graduating and since then has started his life there.  Thankfully, Brandon’s work has been incredibly helpful and willing to work with him through this process.  Brandon still works on a daily basis.  Yes, what used to take him five minutes to complete now takes him twenty minutes, but the kid has not given up.  

    His positive attitude about this disease has forever changed my outlook on life.  I could not imagine being 25 years young and having this disease.  He no longer has the type of freedom that we do and by freedom I mean the simple fact of grabbing the car keys and going to the grocery store to get items for dinner.  He can’t sit back and relax on the couch after a long day of work to “watch TV.”  In order for him to “watch TV” he has to be up close and by close I mean within inches of the screen, with his head tilted just the right way.  

    Thankfully, Brandon is the type of person who does not give up.  I cannot even begin to imagine going through this life changing disease at 25 and I’m guessing for those of you reading this, you couldn’t either.  So as you could imagine, this is a life changing disease for him, as well as our family.  However, as his sister and biggest fan, I could not be more proud of how he has dealt with this situation.  As I stated earlier, he can no longer drive, but he is still working on a daily basis to try and live his life like he once did.  I have always looked up to my brother as a role model, but I look up to him even more now.  His dedication, commitment and his positivity have led him to live a normal life once again, regardless of what has been thrown at him. 

    What most people don’t know about this disease is that it is genetic and gets passed down from the mother.  With that being said, I as his sister, could potentially wake up one day and lose all of my central vision.  I also have to worry about passing the mutation down to my own children, one day.  Yes, it is scary, but watching my brother grow as an individual and continue to live his life and work every day, has allowed me to prepare for my future if one day I do become diagnosed.  Obviously it will take time, but I will somehow get through it, just like my brother somehow gets through his everyday life of living on his own and overcoming every situation he is presented with, without being able to see. 

     For those of you that have stuck with me reading this, thank you!  As 2016 came to an end and a new year started to approach, there was one thing that was constantly on my mind and that was the continuation of my brother’s positive attitude.  And with that positive attitude of his came positive light; positive light for a cure, positive light in his future, and positive light for him to remain the great person that he has always been.  As you could imagine, I have done a lot of thinking these last twelve months on different fundraisers I could do to help raise money and try and find a cure for this rare disease that only 35,000 people worldwide suffer from.  As for now, I have come up with a customized silicone bracelet.  This bracelet will read “VI510N” (vision) and within that spelling it has (510) as the letters.  The background behind those numbers is the numeric numbers for May 10, the day he was diagnosed with Leber’s Hereditary Optic Neuropathy and the day he legally lost his “vision.” 

    As my brother always says, “He may have lost his sight, but he will never lose his vision.”  By this he means that although he has legally lost his eyesight, he will never lose his path of life that he has always envisioned for himself.  

     I hope my brother’s story has inspired you and motivated you to never give up and keep moving forward regardless of what is thrown at you.  Life is hard and life surely is not always fair but the most important thing to take away from this and learn is that you can continue to move forward.  Trust the process, learn to accept the curve balls that are thrown at you and keep going.  Stay positive, give it your all and always be thankful for what you have.  One of the greatest kids I have ever met, a freshman All-American baseball player, my brother and best friend, randomly lost all of his central vision in a span of a few months at twenty-five years young.  As hard as it was for him to accept this and the fact that he may never see again due to there being no current cure for this disease, he has not given up.  Did he have his hard days? Absolutely.  Does he still have hard days?  Of course.  More days than not he is having a hard day, but he has learned how to cope with life, how to cook without being able to see, how to do laundry without being able to see, how to shave his face without being able to see, etc.  For some of you, you may be thinking to yourself of how easy some of those things might be.  I sometimes find myself trying to do a task as simple as taking a shower with my eyes closed.  It’s not easy; there is nothing easy about it; it is very frustrating.  However, he continues to wake up every day and manages to get through the day.  His days are our “average” good days.  His days are tough, very tough, but he continues to smile and keep his faith.  Let my brother’s story motivate you to keep going and to never give up, at anything in life.  Continue to smile, continue to live life to the fullest and always, always, always count your blessings. 

    I personally want to say thank you to all of you that have taken the time to read up on my brother’s story.  He is one amazing individual with the brightest smile.  My primary goal in life is to keep him smiling and constantly remind him of how wonderful of a person he is.  But my ultimate goal is to raise money for a cure so that one day, my best friend and brother can see my face again.  Until that day comes, I will patiently wait, but until then I will try my hardest to raise money to help find a cure for every single individual who suffers from this disease.  Thank you all again and if you wish to buy a bracelet and/or donate, I thank you ahead of time.  You all will make a difference and for that I can’t thank you enough. 

Where is Brandon now? On April 14, 2018 – Brandon married the love of his life, Meagan, and is currently living in Kentucky.

A special thank you to Shannon Elliott for allowing me to repost Brandon’s Story. This blog was originally published on HowHeSees.org.(May 10, 2018) Check out the website to read more about Brandon.

Buy a Vi510N Bracelet to support LHON research for a cure!

Blind Reflections | Jonathan Dator

Adventures In Being Legally Blind | A Blind Reflection By Jonathan Dator

This winter I was up in Boston at the Copley Place Mall shopping for a leather jacket. When I found one I really liked the employee working at the store said, “But….that’s really expensive.” I felt like I was living out the scene from the movie Selena when she was at the Mall looking for a dress to wear to the Grammy Awards and the sales person said something similar to her.

I had this “how dare you, you don’t know what I can and cannot afford” moment in my head and simply said, “I’m willing to spend.I haven’t purchased a new jacket in years. How much could this possibly cost, anyway?” Well, it turned out I was at Barney’s and not Banana Republic (oops) and the jacket was $2,100. I ran out of there as fast as I could while saying, “That’s two mortgage payments!”.

Anyway, fast forward to today. I just bought Armani cologne and the woman at the cash register said, “This is the $100 one.” When I said I realized that but wanted it anyway because it was twice the size of the $80 bottle she said, “Well, it’s your lucky day because it comes with a free bag and some free samples. It must be really hard for you to spend money like this with your condition. Just for you I’m going to throw in extra free samples!”.

Image is A black bag that has the words Giorgio Armani printed in white On the side of the backAfter taking a sip of my coffee, I thought to myself, “You know what, Jon? You’re tired today.” So, I said, “Sure, go for it. Throw in another $100 bottle of cologne if you feel like it!”…..I didn’t have the “how dare you” response that I had while shopping for a leather jacket a few months ago. Not because there is anything wrong with the “how dare you” response, but because I just didn’t have the energy for it.

Today was a “hand me the free shit” kind of day, and sometimes there is absolutely nothing wrong with that response either. ~ Facebook | May 6, 2018

Jonathan Dator has been legally blind from LHON for 15 years. He is a Psychologist and Associate Director of Training at Providence College in Rhode Island. Here is a link to another Blind Reflection by Jonathan

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!