Oh Momma | Molly Johnson

My daughter, Molly, has a way with words, thoughts, and feelings. When she puts them together to create a heartfelt blog – comparing me to glitter – it’s priceless. ❤️ Love my sweet Molly Mo!

The crazy life of Molly J

Oh momma how I love you. You’re my best friend and my closest confidant. My momma is like glitter, alway shining bright but you can never seem to get rid of her. She is brave and fearlessly bold in how she loves others. She may be blind but she sees me in a way no one else can, it’s kinda maria and molly thing. Oh, how my momma is gorgeous and a dancing queen. She may even be a better dancer than me, but I’ll rarely admit that. My momma is funny as hell! Yes, I’m finally admitting it, even when I am having my darkest days she will always be the light who illuminates my heart. When she isn’t at home it just feels like a house. Oh, my momma loves me so much as do I love her. This blog is somewhat out of the blue, but it…

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Blindness, Binoculars, And A Beautiful Bride

Recently, there was a photo shared on social media that caught my attention.

The photo was posted by Shannon Elliott. It captured a special moment at her brother Brandon’s wedding. The moment when Brandon looks down the aisle at his beautiful bride. He wanted to see more than a foggy blur, which meant he had to put away his pride. You see, Brandon is affected by LHON and is legally blind, so he needed a little assistance to see her beauty through his own eyes.

In the photo, Brandon, a very handsome groom, is holding a pair of binoculars up to his eyes. The smile on his face speaks a thousand words!! Below is what Shannon wrote about the photo.

“Just wanted to share this photo with you all. ❤️ For those of you that don’t know… my brother went blind and lost all of his central vision in May of 2016. For the longest time, he was not comfortable talking about what had happened to him, not comfortable asking for help from people, not comfortable using visually impaired tools to help him see (especially in front of people), etc.

On April 14, 2018 he took a pair of binoculars down the aisle with him so he could “see” his bride walk down the aisle. 😭 Be still my heart. ❤️
I have never been so proud of an individual before. You continue to show me that the positives outweigh the negatives. You continue to show me to never give up. I wish I could put into words how much you mean to me and how thankful I am God chose me to be your little sister.
Be sure to visit our website: www.howhesees.org
I have limited VI51ON (vision) bracelets left in all sizes. If you would like to order one to support LHON research, click here! My goal is to send the biggest check I can to The LHON Project/UMDF at the end of November. Thank you for sharing my brother Brandon’s story. ❤️” – Shannon’s Facebook Post | 9/29/2018

Omg! Don’t you just love that!! It gave me all the feels! One thing is for sure, I will be using some fancy shmancy binoculars at my kid’s weddings!! Yup. They work pretty well for our type of central vision loss.

Shannon is such a wonderful sister — so be sure to check out her website! You can read Brandon’s story here — How He Sees – A Sister’s Insight Into Her Brother’s Sight Loss | Shannon Elliott (May 2018)


“Now I’ll Guide You” – The Meaning Behind Her Tattoo

 

My daughter Molly had just turned 14 years old back in September 2013. Her only concerns were her friends and enjoying her first year of high school. All was good until life threw “your mom is going blind” into the middle of her teenage world.

Yeah. It was not an easy time for her. Molly and I have had our share of sad, angry, and “life is so unfair” conversations about LHON and my vision loss. With lotsa laughter and a tonah tears, we’ve managed to get through most of it unscathed.

Fast forward 5 years.

Image: A photo of my daughter Molly and I,Molly is now 19, and one of the most resilient, strong, and compassionate young women I know. Is it because of what she has gone through? Adjusting to a blind mom? Maybe. Honestly, I don’t know too many young girls who have had to cope with their mother going blind in a matter of months. It was a game-changer, to say the least! Molly definitely had to grow up faster than most of her peers.

You may have read my recent blog titled, “Empowering My Invisible Disability With A Touch Of Ink”, where I talk about my first tattoo. What I did not mention, was this.

As I was getting my tattoo done, Molly was one chair over from me getting her third tattoo done. Another mother-daughter moment for the books right there!

She recently posted a photo of her tattoo on social media and this is what she wrote.

“Five years ago, on September 24, 2013, my mom – aka my world – was diagnosed with a rare disease which deemed her legally blind. Sighted or not, you’re amazing and still funny as hell! Thanks for guiding me when I was young. Now I’ll guide you, not into poles, and always tell you where the curbs are. I love you more than words could ever say! ❤️ mhj forever.” | 9/24/2018

So touching and sweet! Right? She is a beauty and a blessing to me! Oh, my Molly Mo – I love her so!

Tattoo Description:

The tattoo is in black ink and located on the inside of her upper right arm. In the center of the design is a simple circular compass. Along one side of the compass is the date of my LHON diagnosis, “Sept. 24, 2013”. On the opposite edge of the compass are my initials, “M.H.J.” – Which also happens to be her initials too. Surrounding the compass, are large wildflowers and sprigs of lavender. They were artistically shaded to give the flowers depth and detail. It’s amazing and so meaningful!! I LOVE IT!

Molly’s tattoo was done at SD Tattoo | San Diego, CA

Check out another blog I featured by Molly:

My Mom Went Blind And My Life Began To Unwind

 

LHON – I Won’t Forget The Day We Met

On September 24, 2013, I met you and you changed my life.

My phone rang. I was a bit annoyed because I was getting ready to go out for the night. I did not have time for any chit-chat. I looked at my phone and It was my Neuro-Ophthalmologist. It was weird. I wasn’t expecting a call from him considering I had just seen him earlier that day.

He had some news. “I have your DNA test results,” he said, It’s positive.” – he paused for a moment. “I am so sorry you have this, but I’m glad we finally know what’s causing your vision loss.” He also mentioned that you were here to stay. Funny, I don’t remember inviting you here. My doctor finished with some supportive words and we hung up.

I sat there for a moment. Wow. We had been searching for you for 6 months. I wrote down your name and number. I didn’t know you, or why you were here. I had a bad feeling that you were about to change my life.

I walked to the other room and told my husband the news. He didn’t know anything about you either. We didn’t say much more, and within a few minutes, I was out the door as planned.

It was my monthly Bunco night with my girlfriends. The thought of canceling never crossed my mind. Why should I? I wasn’t gonna let you, a complete stranger, get in the way of my wine, women, and fun. But, deep inside, you scared me. You made me feel anxious. Should I be worried about what you were doing to me? 

Sitting in front of two of my closest friends, Robin and Ursula, I brought you up in our conversation. I said, “Okay, so, I just got a diagnosis. It’s a really long name with a number. LH…umm, something. I don’t really know anything about it. I think it may involve my kids too. I don’t know…”. It got quiet. I started to feel numb. Perhaps in shock. As people arrived and the night went on, you weighed on my mind — forcing me to think about you. I kept pushing you away. You just appeared in my life an hour ago for god sakes! Back the f*ck off!

When I returned home, my husband told me that he read about you on the internet. You were my worst fear. I heard the word “blind”. I heard that you could also cause my kids to lose their vision. OMG. Not my kids. I can not fathom my kids going through, what I’m going through at some point in their lifetimes. I had heard enough about you. How dare you come here and do this!  

But, you don’t care. You don’t care one bit. And, little did I know, you had the balls to unpack your shit and setttle in months ago. All without me ever knowing, until now.

It was getting late. I’ll read more about you tomorrow. This isn’t going to be a big deal. I’m driving, I can still see, okayish, and I’m managing just fine. Yeah, I’ll be fine. Everyone will be fine. You want to stay? FINE! Make yourself at home Lebers Hereditary Optic Neuropathy – #11778, or LHON, or whatever you want to be called. I’m calling my good friend Miss Denial tomorrow and she is fierce! She is gonna keep your emotional shit storm away from me for as long as she can!  

The day I was diagnosed, after 6 months of many doctors and tests, was one I’ll never forget. LHON is still here causing me problems at times, but we get along a lot better than we used to. Unfortunately, I “see” no signs of it moving out any time soon. Damn squater!

Empowering My Invisible Disability With A Touch Of Ink

There are many types of invisible disabilities. They are conditions I suspect many people would like to forget – even if it was just for a day. Unfortunately, that’s usually not a choice. Disabilities, seen or unseen, often come with unwanted physical and emotional scars – little personal reminders. They remind us of our unexpected life. Yep. A life we did not choose.

Although our condition may never be totally cured, only managed, there are things we can do to empower our invisible selves and maybe deflate the stigmas we often encounter at the same time. We can take control. We can get creative – creating something artistic, powerful, and personal. Hmmm. Have you ever thought about getting a tattoo? No no no, not as another depressing reminder. But as a design you choose to empower your mind, body, and truth surrounding your disability. How cool does that sound!! Oh, wait. Don’t tattoos carry stigmas too?  Yes. Yes they do. The fact is, tattoos and disabilities have BOTH been stigmatized in different ways. 

Society has become more openminded and accepting of tattoos as part of mainstream culture. There is still the idea that people who have tattoos are somehow related to a gang, unprofessional, or from a bad part of town. In reality, that’s not always true. It’s that kind of thinking that feeds the stigma attached to tattoos. Nowadays, in many professions and workplaces, tattoos have become a little more acceptable. People design tattoos that have incredible meanings and stories behind them. They could even be considered works of art on the human body. And yes, I am well aware that tattoos are not for everyone.

In a similar way, many Invisible disabilities are often minimized, overlooked or misunderstood. You know, if you don’t look disabled, then you must not be disabled. There’s nothing wrong with you – You’re just being lazy, overly dramatic, unmotivated, or faking it. Okay, I believe I can safely say that 99.9% of the time, that’s not true. It’s a stigma attached to invisible disabilities. Since I became disabled myself, I have come to understand the stigma attached to various disabilities, particularly vision loss. I suppose that’s why conversations that include “teachable moments” are so important!

Personally, I think the process of designing and getting a tattoo symbolizing your invisible disability can do two things. One, it can feel incredibly empowering. Two, it can spark conversation and bring awareness to a particular condition. It’s a “two-for-one” that just may help deflate the stigmatization of both tattoos and disabilities.

I have wanted to get a tattoo for years. I just never had the guts, the perfect design, and the whole universe come into alignment for me. Since becoming legally blind, I wanted a tattoo to express my experience from my LHON diagnosis to reinventing myself as Girl Gone Blind. Recently, my guts, a perfect design, and the whole damn universe aligned!

So, I did it. I got my very first tattoo!

What is it? What is it? What is it? Good Lord! Calm down… I’m gonna tell you.

My tattoo on my right leg. The description of my new tattoo is in the blog!
Photo Of My Tattoo

My tattoo is on my right leg. On the inside of my calf to be exact. It starts right above my ankle and ends about 2 inches below my knee. It was drawn in black ink. The design is based on a traditional Buddhist symbol called an “Unalome”. The same unalome design my daughter has on the back of her calf. The unalome represents a path a person takes throughout their life. The path can be messy and swirling with fear, anger, sadness, anxiety, and even happiness.  That part of the tattoo, nearest my ankle, is a lot of curls and swirls that loop back-and-forth, creating a beautiful, yet chaotic, design. As the line (i.e. the path) unfolds and straightens, the mind finds clarity, eventually freeing itself from the cycles of struggle and suffering. At the bottom of the unalome, I have the date “9.24.13” – which is the date I was diagnosed with Lebers Hereditary Optic Neuropathy (LHON). In the line, that has unfolded from the swirling chaos, the words “girl gone blind” is written in cursive. The line continues up from the words and ends with 3 dots. An ellipses. The ellipses means there is more to come.

I absolutely love my tattoo and what it means! I’m not unprofessional, related to a gang, from the bad side of town, lazy, overly dramatic, or unmotivated. And, I am not, in any way shape or form, faking my vision loss. What I am doing is, living, learning, laughing, and moving on after a life-changing diagnosis that no one can see.

Creating this tattoo was so cool for me. It not only empowers me and my disability, but the emotional path I travel. It has already sparked conversations about my vision loss which confirms I have no regrets about my touch of ink!

*Tattoo was done by Jason Anderson at SD Tattoo | San Diego, CA

What do you think of it? Feel free to comment with a picture of your tattoo!

Simple Strategies For Responding To Comments About Your Vision Loss

People say the darndest things, don’t they?

Do you ever wonder why family, friends, or even complete strangers say the things they do about you and your vision loss? You know, things that make you go “Hmmmm”. Well, chances are, they’re just trying to be helpful or encouraging the best way they know how. Some people may be at a loss for words and what they end up saying wasn’t meant to be patronizing or sarcastic. Then there are others who need to keep their damn mouth shut.

I know how other people’s comments can sometimes be a bit ridiculous, and yet, I know they really do mean well. Over the years, I have learned a few ways to ignore, own, deflect, or simply appreciate people’s comments in regards to my vision loss. Perhaps you will relate to one or all of the following comments that have been said to me.

1. “My friend’s mom had a weird vision thing, and her vision improved by drinking kale, eye of newt, frog oil smoothies every day. You should really try that!”.

Ummm. Thanks, but no thanks to this and any other random health advice. You know the ones I’m talking about – everything from “You need to go to this eye specialist I know,” and “You should try this new detox diet I saw online,” to “You need to try these vitamins I sell in my business, I’ll send you a link!”.  ugh.

Response strategy: Start by giving the person offering the advice the benefit of the doubt. They likely are offering this advice because they care about you and want to help. And such recommendations are better than the alternative option where they either ignore you altogether or ignore the fact that you are legally blind. Simply offer your thanks and appreciation for their concern and information. If they don’t back off, you might also tell them that you have a great doctor or several specialists who provide you with excellent care and are up-to-date on the latest treatments/research for your condition. You can also make this a teachable moment to increase awareness about your type of vision loss.

2. “Wow, you’re amazing!”.

Let’s own this one! Such a comment usually comes on the heels of people first learning of your vision loss or hearing of the challenges you face because of your vision. Take it as a compliment! It certainly beats hearing “Wow, you’re a miserable mess”. Right?

Response strategy: First of all, you could consider it a win that you are successfully hiding the struggles and challenges nobody knows about. It’s not that you’re ashamed of them, you just don’t have to put it out there 24/7! Think of it this way – when we look at an Olympic gold medalist, we see them proudly wearing their gold medal after crushing their competition. But how often do we think of this athlete in grueling workouts – training and practicing their sport for hours every day. Pushing through the pain, sweat, and fears to be the best they can be. Hmmm? Not that often. Instead, we just see an  olympic champion – a freakin’ badass. Perhaps that’s what others are thinking when they say, “Wow, you’re amazing!”. C’mon, own it. Being seen as a freakin’ badass isn’t such a bad thing, is it?

3. “If You’re going to go blind, now’s a good time.“. 

What What?  Yep. I’ve heard this one a few times. This is the comment you may hear after a conversation about assistive technology or accessibility features on your smartphone. You may get the overwhelming urge to say “Are you effing kidding me?” and angrily assure them that there is NO good time to go blind!  Hey, I totally get it! In fact, I’ve been there, done that debate. But we know what they’re really trying to say, right? The sighted people around us are so amazed by what today’s technology can do for people who are legally blind, (i.e. software programs, magnifiers, CCTVs, wearable and assistive devices, phone apps, etc. etc.) they are sincerely happy for us! Happy that we have so much available to help us be as independent as possible.

Response strategy: Let’s not get all bent out of shape here. As someone who lost her vision 5 years ago, I can now say that I agree with this comment. They are right! Don’t you agree that today’s technology for the blind or visually impaired is amazing? If someone is unfortunately going or has gone blind in 2018, it is a good time. Many things in life are now made accessible and the assistive technology available is insane! If you have been blind for many, many years… I suspect you would agree that losing vision today is better than losing vision 10, 20, 30 or more years ago! So, let’s all calm down and keep our cool.

4. “Why are you parking in a disabled parking space? You’re not disabled!”. 

There are ignorant self-appointed judging a**holes In the parking lots and streets of every city or town. Most likely you will never see this person again so who cares what they think.

You have a handicapped placard because the only entity that matters in this situation, is your state’s department of motor vehicles. The DMV, (and your doctor), recognizes that you have a disability. So, you have that powerful agency in your corner, unlike the idiot who’s passing uninformed judgment.

Response strategy: Just let it go. Ignore it. But if you feel you must say something, you could stop and make this a teachable moment about invisible disabilities. Try not to start the conversation with “Oh. No. No you didn’t. Who the hell do you think you are?”. Well, at least don’t say it out loud!! Honestly, I’m not so sure that a person making such judgmental comments is in the right frame of mind to stop, listen, and learn from you. Use caution if you take this approach.

While living with vision loss can be difficult at times, having strategies for responding to unsolicited comments can help you take these encounters in stride. People will continue to say the darndest things to those living with vision loss, or any disability, including the famous, “Everything happens for a reason my dear.”. – for. the. love. of……. – stop it! – So, keep your head up and your heels high, and celebrate the efforts you put into living your best life every day.

GGB Notes:

• In regards to comment #1 – Do your own research or check with a medical professional before buying into a diet, product, or service you know nothing about.

• The “Response Strategies” I mention above are just suggestions, nothing more. I am not telling you, or anyone else, how to handle the comments you receive. I only offer these as ideas for you.

Listen With The Lights Off: 19 Podcasts About Blindness | Susan Kennedy

I was thrilled to be featured on this podcast list! Check out all 19 of Susan Kennedy’s podcast picks and what she had to say about them!

Since I loaded my beloved orange iPod mini with Fresh Air episodes, I’ve enjoyed podcasts. Gaining a disability a few years ago didn’t end my love of the audible word; it enhanced it. Currently, my accessible smartphone fuels my keen consumption of pods. In celebration of Blindness Awareness Month, observed annually in October, I’m serving up interesting, funny and myth-busting stories. You’ll meet a variety of people with visual impairments and explore topics related to blindness. They’ll blow apart assumptions about the blind and perhaps even notions of disability. Get ready.

1. Eyes on the RoadThe Moth

[September 20, 2012, 13 minutes]

Ryan Knighton will make you laugh, cringe, think, and laugh some more. When the Canadian writer took the Moth stage, he spoke about slow-speed crashes, missed signals, and taking a stand despite uncertainty as he went blind.

2. How to Become Batman, Invisibilia

[January 23, 2015, 58 minutes]

Holy wooden headphones! Expectations affect behavior. First, hosts Lulu and Alix introduce the idea with an experiment. Then they present a profile of Daniel Kish, a SoCal man who uses echolocation to navigate the world without restrictions. Invisibilia unpacks the reality of low expectations for people who are blind, the product of a social system with certain beliefs for certain people.

3. Blind Kids, Touchscreen Phones, and the End of Braille?Note to Self

[August 31, 2016, 19 minutes]

Host Manoush Zomorodi hears from reporter Ryan Kailath about visiting a tech savvy institution in the disability community, the Texas School for the Blind (TSB). Students and staff of TSB consider how smartphones diminish the desire to learn braille. But, literacy is not as simple as using a touchscreen.

4. Blind LoveThe Longest Shortest Time

[March 19, 2014, 24 minutes]

The choice to bring a life into this world changes relationships. What happens when you’re a parent with a disability? Jeff and Sarah Overmars, a Canadian couple, reflect on parenting when a spouse has vision loss. Romance, hardship, and honesty in the marriage unfolds.

5. Reading by EarAdaptive

[April 20, 2016, 20 minutes]

Audiobook technology wasn’t invented by Audible. Mara Mills, Associate Professor of Media, Culture, and Communication at NYU, tells the fascinating history of Talking Books, the books made specifically for people with print disabilities. Cultural shifts deconstruct the stigma of what to read and how to read it.

6. Driverless and sightlessOuch: Disability Talk

[July 8, 2016, 23 minutes]

Let’s turn now to a BBC import. Ouch offers commentary from a rotating panel unafraid to use humor to advocate. This episode includes Damon Rose and Emma Tracey, two people with visual impairments, and guests who banter about independent transportation. They volley the social and political consequences after a driver dies behind the wheel of an autonomous vehicle.

7. Do You Dream in Color? Insights from a Girl Without SightThe Diane Rehm Show

[October 22, 2012, 52 minutes]

Laurie Rubin, an accomplished opera singer and writer, speaks with Diane about her career and how she doesn’t let her blindness define her.

8. Architecting About DanceThe Allusionist

[September 23, 2015, 14 minutes]

Witty host Helen Zaltzman examines a technology many people with vision loss use: audio description. With it, listeners obtain info about nonverbal elements like costumes, facial expressions, physical movement, and sets. Zaltzman chats with audio describer Alice Sanders and choreographer Steven Hoggett on the challenging task of narrating dance.

9. My Delicious ExperienceSeminars@Hadley

[October 9, 2012, 60 minutes]

Blind people wield knives like everyone else: carefully and effectively. Former Hadley student, writer, home cook, and MasterChef champ Christine Ha details her appearance on the reality show as well as cooking with vision loss. Her compassion and ability to connect shines through in the Q&A part.

10. Wait Until DarkSnap Judgment

[July 24, 2015, 11 minutes]

A Louisiana student has a problem. Drama, action and comedy plays out.

11. Alabama Shakes’ Brittany Howard On Small-Town Life, Big-Time MusicFresh Air

[January 28, 2016, 45 minutes]

Everyone has a story, and this is Howard’s. She’s a talented singer/songwriter and musician. Also, she has vision loss. She recalls the creativity behind her soulful art with interview maven Terry Gross.

12. Blind Parenting, Transom

[June 5, 2012, 13 minutes]

On Transom, independent producer Jay Allison showcases creators of audio stories. In this episode, two siblings who are blind and whose parents are blind contemplate blind parenting. That’s a lot of blind and a lot of parenting. Are you nervous? Relax, learn, and enjoy.

13. Laura Bridgman’s EducationStuff You Missed in History Class

[June 4, 2012, 27 minutes]

Two ladies wax historic about Laura Bridgman. She was the first educated American with hearing and vision loss. Charles Dickens wrote about her. In her time, Bridgman became the most famous woman in the world.

14. Fake Service Dogs and Blind ImpostersBlind Living Radio

[August 14, 2015, 17 minutes]

Hosts Harley Thomas and Danielle Creapeau and guest Norbert vent about the scourge of fake service animals.

15. Maria Johnson, RNIB Connect’s Morning Mix

[September 20, 2016, 10 minutes]

Maria Johnson, a fitness instructor from the west coast, radiates energy. On this piece from the UK’s first station for the visually impaired, she chronicles the first time she traveled solo with her white cane.

16. Justin KauflinJazzWatch

[January 29, 2015, 42 minutes]

Acclaimed pianist Justin Kauflin, mentored by Clark Terry and signed by Quincy Jones, is interviewed by host Greg Bryant. Hear him play songs and recount his experiences living in NYC, and touring the world. Also, they remark on the award-winning documentary Keep On Keepin’ On, which followed the supportive relationship between Kauflin and Terry.

17. How Guide Dogs WorkStuff You Should Know

[October 22, 2013, 41 minutes]

Josh and Chuck mansplain guide dogs.

18. Strangers in the Mirror, Radiolab

[June 15, 2010, 26 minutes]

Vision loss isn’t all in the eyes. It can develop in the brain. In this live-on-stage episode, Oliver Sacks, a well-known neuroscientist, and Chuck Close, a popular portrait artist, ruminate on their face blindness.

19. Icon For Access99% Invisible

[February 18, 2014, 17 minutes]

Ok, ok. This one isn’t just for blindness  —  it relates to all disabilities. But a playlist wouldn’t seem right without a selection from the great 99% Invisible team. The show has delved into universal design and autonomous cars, but in this episode, it conveys the creation of the international sign of access. You know it. That white figure sitting in a white wheelchair with a blue background. Isn’t there a better, more dynamic option for representing people with disabilities? Listen and consider why symbols matter.

Listen With The Lights Off: 19 Podcasts About Blindness, by Susan Kennedy, was originally published on Bello Collective on October 1, 2016

The Bello Collective is a publication + newsletter about podcasts and the audio industry. Their goal is to bring together writers, journalists, and other voices who share a passion for the world of audio storytelling.

If you want to catch more of my podcast episodes on RNIB Connect Radio – Click here: Maria Johnson – Life Blogger Playlist! ENJOY!!