One of a Special Kind – A Poem about Girl Gone Blind

I was so incredibly flattered when RNIB Connect Radio’s favorite poet in residence, Linda Raskin, gave me a shout out on air. She wrote this sassy little poem about GGB, and  I just could not keep it to myself! It’s brilliant! 

ONE OF A SPECIAL KIND by Linda Raskin 

I listened to Maria, you know, at Girl Gone Blind. She’s sassy, feisty, funny…one of a special kind.

She tells you just the way it is, and gives you lists to keep you right. She shares the mad things that have happened, since she lost her sight.

Maria, nearly put her chewing gum in an old man’s head of hair. She mistook it for a waste bin, such panache, such style, such flair.

She’s even eaten dog food, which apparently is vile. But now her hair is cruft like glossy, on that there’s no denial.

And if you want to say you’re blind, then say it, that’s your choice. But if not, put it how you please, Girl Gone Blind says use your voice.

I’d really love to meet her, she sounds my kind of gal. I wonder if she’d contemplate a not blind Scottish pal!

For your listening pleasure… You can hear Linda recite the poem by clicking the audio boom frame below. Her Scottish accent and charm just warms my heart! (Thank you Linda… my Scottish pal! xx )

//embeds.audioboom.com/posts/5341661-linda-raskin-gives-maria-johnson-a-shout-out/embed/v4?eid=AQAAALMuQ1jdgVEA

60 Heartfelt Thoughts To Pick You Up When You Feel Down

“I can’t go to the grocery store (or any store) by myself anymore. I need someone to read things to me and help find different items for me. The different checkers, who have become my friends, have started to notice that I am not running in and out of the store, several times a week, like I used to. One of the check out gals asked me how I was doing… and I could tell by the look on her face, she knew something was different. I told her about my vision loss and that I was now legally blind.

In the middle of my transaction…. she started to cry. She finished and came around the check stand to give me a long hug. As I walked away, she said “I’ll see you soon Sweetie.”. I smiled back and nodded my head with a yes.

I held It together until I walked out of the store…. Then, I cried. I cried all the way to the car…and on the ride home. I can’t believe this is happening. My life is slowly changing and I am reminded of that every day. I miss my old life sooooo much. I know it’s just going to take some time and I will live through this somehow.”  ~ My Facebook post on November 21, 2013

Oh, the beauty of social media. It keeps a great timeline of your life. Social media also has a cool way of bringing up memories that allow you to reminisce about the past. Thanks Facebook!  Before GGB was created, I posted bits and pieces on FB about my adjustment to vision loss. The “status” above popped up on my memories today. I clearly remember feeling my independence and self-confidence shrinking and my sadness growing rapidly, Just weeks after my diagnosis. The question ,“HOW am I going to live the rest of my life this way?” , was on repeat in my head. And, I really did NOT know the answer. But, my friends did, and they let me know!

__________colorful-heart-painting-1You guys… the amount of love and support that flooded my Facebook in response to my post was overwhelming! Every comment I read translated into someone picking me up and dusting me off.  My friends and family knew I could live this unexpected life. Well, Thank God someone DID! I hope you have as much support as I have had since losing my vision 3 years ago. It is truly priceless.

If you haven’t… I want to SHARE it forward. I’m passing on 60 comments that I received on that original post in 2013. My hope is that these heartfelt thoughts will pick YOU up when YOU feel down. Are there really 60 of them?  You BETCHA!! Go ahead… take what you need. xx

❤️   You will [get through this time]. But it’s okay to mourn sister. Cry your heart out if you need to. It can’t be easy. But yeah, you will live through it!

❤️   I am here to support you, because you supported me when it came time to be fit and healthy, you just do not let good people go through things like this by themselves. I am here for you along with everybody else.

❤️   God will never give us anything we can’t handle… Just trust in him:))

❤️   Hang in there, this shall pass 🙂

❤️   I am so sorry….. I can only imagine what you’re going through……it’s ok to cry

❤️   Thinking of you!!!

❤️   Thinking about my favorite sister… Xo

❤️    It is ok to cry and important that you do. 

❤️   Sending you love and positive vibes always!! xo

❤️   You probably do not have a clue how bad people feel for you and wish it weren’t true…..

❤️   I believe it is so very, very difficult my friend. Sometimes you just need to cry… I am with you! Hugs…

❤️    I’m so sad and devastated for you… but just know we love you!!!!

❤️   You are such a strong person! No doubt that you will handle this like a champ.

❤️   You are so strong! Hang in there! I’m so sorry you’re going through this. Xoxo

❤️    Awwww…reading this breaks my heart and makes me teary eyed 😦 You touch so many people in so many different ways. The world needs more people like you. Thoughts, prayers, love, & hugs. XOXOX.

❤️   Wish I could give a hug too.

❤️   Stay strong, sister. If you need to talk, I know how it is…. I miss my old life, too.

❤️   HUGS

❤️   Big Hugs to you. You truly have so much to still give.

❤️   You are a POWERHOUSE of positivity, love, and light. We all love you and will support you, heck, even the cashier girl loves you!! Being Momma, I wish nothing more than to take this away. Love you, Honey!!! You experience so much passion for life. You are loved and cared for by more than you can imagine. I know you must feel angry and sad, but please don’t let this break your spirit. That truly would be the loss.

❤️   You are such an inspiration to all who know you and don’t ever forget that…..you are AMAZING

❤️   You are amazing! You will somehow figure out how to make this work and come out on top. Look at how you worked out to become this sassy, hot momma with all that hard work. This will not be an easy journey by any means, but you have a team of supporters, just don’t be afraid to ask for help.

❤️    Just know that you are giving us all strength and we are amazed by you. We all love you

❤️   Hang in there…..I will take a sightless you over no you…any day of the week….and I know there are plenty of people out there who feel the same…I always have heard that when you are deprived of one sense it heightens the others…So grab a hand and listen to your friends and family we are here to help and support….come on blind girl…we got this

❤️   Hugs and love!

❤️   You are so strong, I am heartbroken for you. I know you will find joy in your new life.

❤️    Your humor, spirit, & perseverance has gotten you thru a lot in your life. I’m confident you will rise to this calling. I’m still sad about it for you. You are loved, my friend, by many. You are blessed in relationships. Let me know if you…

❤️   WE got this– it’s so hard on you but WE are going to go with you. We can’t remove the pain or fear, I know that. We are just here with the hand to help you and hold you up high.

❤️   You are BRAVE and STRONG! Your family and friends love and support you…stay close to these people for a fulfilling and enriching life!

❤️   Awww I’m so sorry. You are a trooper through this.

❤️   Please remember that we, your students, are also your family and are here to support you as much as we can. 

❤️   Wow, everybody has said it so well. You are not only one of the strongest people I know, but you are surrounded by so many people who truly care and want to be there for you.

❤️   You have some more crying ahead of you, then one day you’ll realize you can have that conversation and not cry. The crying is normal and okay, just know that it’s a phase you’re working through and it will pass. Hang in there.

❤️   You are, and will continue to be, an inspiration. I see a book in your future!

❤️   My thoughts and prayers are with you during this difficult life change. It’s alright to be sad, vulnerable and to let your guard down. Use those who are willing to help and cry on the shoulders of those that those are willing to lend em’. You have such amazing friends and family. God bless you.

❤️   Big online hugs, you are in my prayers. XOXO

❤️   In my experience…and those escapades have not been for pussies…what I LOST will brought me many new FOUNDlings lol.. hope the language is okay for the person that had to read this to you

❤️   You have the strength to push thru. Remember it’s like learning a new language. Takes lots of practice, you’ll make lots of mistakes, be embarrassed many times. .. but you will master it. And you will be proud.

❤️   We’ll take you anyway we can get you! If you require a shopping adventure, let me know and one will be planned. And I promise to not wear workout tights as pants.

❤️   I don’t know you and I’m tearing up reading this. Stay strong. You have many people who love you.

❤️   You are a STRONG woman! I would love to go shopping with you!!! I am here for you!!!!!! Let’s do it! ♡

❤️   You are amazing and strong and have an awesome support group around you! Keep your head up and always smile, even when you don’t want to. It helps make things just a lil better

❤️    I can’t tell you enough how AMAZING you are and what a HUGE inspiration you are to me and sooooooo many other people!! I am BLESSED to have you in my life. SO MANY people love you and are here for you. I know what you’re going thru is NOT easy, but you will get thru this! Love you ❤ XXOO

❤️   I don’t even know what to say other than I’m here if you need anything. I sent you a private message recently, but I’m guessing you haven’t read it – not sure if you can…..I wish I could magically make your sight come back.

❤️   Love you

❤️   Love always! (((HUGS)))

❤️   I’m sending positive thoughts your way, even though it sounds like you don’t need any. 😉 You are an inspiration!

❤️   Stay strong girl. I can only imagine how hard this is for you. I pray for you EVERY day. If you need anything, never hesitate for a second to ask me.

❤️   You are amazing!

❤️   Hugs 

❤️   Okay….this post made me tear up! You are amazing lady!

❤️   Just breathe I am praying for you.

❤️   Just always keep that beautiful smile on your face 🙂 Oh, and a good glass of wine once in a while always works too 🙂 LOVE YOU !

❤️   You kick ass in the gym and you’ll find a way to kick ass this! Many baby steps lead to big change…you told me that many times and it has gotten me out of bed for a year and a half. DON’T let it beat you…you are more than eyes. I believe in you!!! Furthermore, love does not need eyes..only a heart

❤️   One day at a time, my friend.

❤️   I love your Facebook messages, the insight into your life is either funny, thought provoking or inspirational. I love how you put it all out there. You could write a great book!

❤️   Oh Sweetheart. What amazing strength you have. I am inspired by you.

❤️   Courage you have… I pray daily that God restores your sight just one touch from him and your world can change again… you are so loved lady and what a blessing that is.

❤️   OMG… so many friends with so many physical and life threatening things going on, if I’m canned from my job, which has been a possibility for months, I’ll be able to help you get some shopping done while I look for employment. Stay strong! There’s a lot of us out there that CARE!

❤️   Oh this makes me cry too! I love and miss you… if I can ever do anything please let me know. You will always stay strong and positive, I know…..xoxo

❤️   Put me on the driving list for Tuesday and any am before 9. Love you!

Featured image: Vivid Heart painting by Ivan Guaderrama, www.ivanguaderrama.com

5 Things Blind People Shouldn't Have To Justify To Anyone

I have learned that when I feel the need to justify myself, some part of me is almost always of the opinion that others must be right and I must be wrong. Defending, explaining, and justifying my choices as a blind person is something I do more than I’d like to. Because some of you don’t know what it’s like to walk in my shoes… I wish you wouldn’t question why I walk the way I do. Here are 5 things blind people shouldn’t have to justify to anyone.

1. When we don’t want to use our white cane.

Perhaps we find ourselves in a place that is familiar and safe, and we don’t want to use our cane, so we don’t. Maybe we find ourselves in a situation where we are feeling a bit self-conscious about using our cane, so we don’t. We can, and we will, let the people we’re with know that we feel more comfortable using them as a sighted guide. Our decision doesn’t have to win anyone’s approval. After all, it’s our white cane, not yours, and we will use it at our own discretion.

2. The words we use to describe our vision loss.

If we are asked about our vision, it is our choice on how we respond. I have heard people say things like, bad eyesight, don’t see very well, vision disability, visually impaired, vision impairment, partially sighted, low vision. We may even use the “B word”…BLIND or legally blind. Some folks don’t like the “B word”, and prefer not to use it. Others may be okay with it, and use it more freely. Obviously…I don’t mind it! Identify your vision loss the way YOU want to and not how anyone else thinks it should be.

3. Why we need blind friendships. 

Our sighted family and friends are never going to truly understand our down days or daily difficulties. How could they? They’re not blind and we would never want them to be. Creating blind friendships through social media, in person, or over the phone, can build a wonderful support network for us. We like to know we’re not alone and that someone else can relate to our troubles and triumphs.

4. Why we may need a helping hand.

When we ask for help, it’s because…we…want…help! It’s not because we want to annoy you. We may want assistance with something that’s very simple for you, yet difficult for us to do. If we don’t need help, we will gladly tackle the task….. but, giving someone a hand should never be too much to ask. And just in case you’re wondering…yes, yes we can hear the fake friendliness in your voice when you feel forced to oblige.

5. Why we want all the details.

We want to hear what we can’t see. Why do you think they created “audio description” for movies and TV shows? Because Us blind kids want to know what’s going on. That’s why! Giving us the details about what surrounding us or in front of us is more than just small talk. You’re fueling our visual imagination and enabling us to feel included. Paint the picture and fill in the blanks….and don’t even think of leaving out the juicy details!  Inquiring blind minds want to know!

Will the people in your life always support your choices and desires? No, they won’t.  But you need to remember that life is not about justifying yourself; it’s about creating a happy life. A life that happens to include vision loss. Your friends and family can walk with you, but not in your shoes.  So, make sure the path you decide to walk aligns with your own decisions. You shouldn’t have to justify your who, what, where, when, and whys to anyone.  

Well, THAT’S what I think! 

The Kindness of Strangers

 “Kindness is a language that the deaf can hear and the blind can see.” ~Mark Twain

My friend and neighbor, Sheryl, has been helping me with various things over the last few years. From driving, navigating the stores, to simply walking with me and my white cane at a local park. We both love to laugh and we laugh a lot! I’m sure people can hear us from a mile away. We’ve never paid much attention to those around us… but, it seems that some of those people are watching us! Not in a creepy way, (as far as I know!), but, in a curious way.

Image is White text on a black Background – That reads "Without the kindness of strangers, where would we be?" Strangers have stopped us to say how nice it is that Sheryl was helping me and we seem to be having such a good time together. We were once asked if we were sisters which was sweet, but a bit of a stretch! (Sheryl is tall and thin, and I’m, well, not!) We simply explained we were just friends. Friends from down the street for over 20 years!

These conversations with random people who pass us by are meaningful moments of kindness! The kindness of strangers will ALWAYS brighten your day!

Recently, my weekly escapades with Sheryl came to a stop and the laughter we shared was silenced. Sheryl was diagnosed with stage 4 ovarian cancer. After months of intense chemo and waiting for surgery, she was given the green light to drive again. It didn’t take us long to hit the road and continue the laughs from where we left off!

Last week, we found ourselves at a Starbucks. No surprise there! With Sheryl sporting a stylish scarf on her head and me carrying my pretty pink handled cane, we strolled through the doors chatting away. Little did we know, we were being watched.

As we picked a table, a gentlemen approached us. He asked if we needed any help with getting chairs or if we would like to sit somewhere else. I sensed he was a nice guy. There wasn’t a hint of creepy or a speck of pity in his voice. We thanked him and said we we’re fine at the table we had. He then turned to Sheryl and asked her how long she had been going through treatment. He explained that he had lost several family members to cancer and understood how difficult it was. She told him her story and worked in how she and I had become a team over the last couple years. He then turned to me, as I stood with my cane in plain sight, and I told him my situation. He gave us hugs, as he wished us all the best, and we got back to the business of drinking coffee!

Upon leaving, we spoke to him again. His name was Greg and we thanked him for Offering to help us and for thekind words he gave us. Greg shared how he watched us come in the doors like we owned the place! Talking and laughing like we didn’t have a care in the world. He admired the way we were handling our personal struggles. Laughing and living with what we now call our “normal”. He said he makes it a point to do something nice for someone else everyday… and when he saw us, we were his opportunity for an act of kindness. How AWESOME was that!

We walked in for coffee and left with something we didn’t pay for. (No, we didn’t steal a bag of French roast!) We we’re given some kindness. Kindness from Greg, who was a sweetheart of a stranger. He absolutely brightened our day!

Things to Remember When You Think Life Will Never Get Better

I‘ve always been interested in all aspects of “personal development”. Some may call it personal growth, self-help, or self-improvement. It’s all pretty much the same thing. I believe we all can use a little mental help every now and then. It’s healthy, not selfish, to want to be happier with the life we live. For some of us, that may be a life living with a disability, chronic disease, or mental illness. 

I saw this piece featured on “The Mighty”. I read it once, and then I read it again. It was spot on! It touched on everything I have struggled with since losing my vision to LHON. It’s simple and written with plenty of encouragement. I wanted to feature it on my blog because…well, perhaps someone else may need to read it too.

10 Things to Remember When It Seems Like Things Won’t Get Better | By Caitlyn Kalustian

We can get to this point in life where we don’t think we will ever come out of the darkness. The light is so far away that we can’t even see it, and it seems our flares and bad days will never end.

Whether it’s depressionanxiety, migraines, fibromyalgia or anything else you may have, here are ten things to remember when you think things will never get better.

1. Life is a cycle.

It’s a continuously shifting balance of up and down. If it’s down season right now, ride it out. The seasons will change again.

2. If you need help or if you’re a danger to yourself or others, go to the hospital — now.

It may seem like the worst place in the world, but the goal of hospitalization is to get stable in the least amount of time as possible.

3. Try mental health therapy, no matter what your diagnosis is.

We know our family and friends may be tired of hearing us complain, but we can’t keep it all in either. Find a therapist you connect with and share whatever you want. Therapy is a safe place with no judgment, and it’s all confidential. The National Alliance on Mental Illness (NAMI) even has aCrisis Text Line so you can be connected with a crisis counselor.

4. Ask for help. Don’t be stubborn.

I know we’re warriors and don’t want to ask for help, but when we’re hurting, we need help. Sometimes we don’t need help, and sometimes we need a lot of help. Don’t force yourself to go downstairs to get the water if you only end up falling down the stairs. Trust me, that only makes it worse.

5. You are not a burden.

Let me repeat that because so many of us feel that way: You are not a burden. You are a wonderful, loved, cherished person.

6. Listen to your body. 

Your body sends you signals for a reason. Pay attention to them. If all you want to do is sleep, then sleep. Sleep is restorative and healing. If you need medication, then take medication. It’s not weak. It’s taking care of ourselves.

7. Find people who understand.

Many of us aren’t able to leave our homes easily, and therefore, we might have to go online to meet some new people. Conduct some Facebook searches and find a good support group for your condition or read articles or find forums. That always helps me.

8. Share your story.

It externalizes it from yourself. You can do this by writing a journal, talking to people and starting a blog. Take your story and use it to do some good.

9. Don’t apologize.

This is not your fault. These things are out of your control, and it’s a disease, a disability or a sickness. You have no reason to apologize. (I’m still working on this one, too.)

10. Never give up.

Find something to hold on to. A pet that needs you take care of it, a family member to lean on and all the people in your corner. Music is also great. Find some empowering tunes that you can sing along to. Find music you love and put on some headphones. Jam out. If you can drive, roll the windows down. Drive on a road where there’s not a lot of congestion and you’re surrounded by nature. Turn the music up, drive and sing your worries away.  

You can do this. You will do this. It will get better. All progress, no matter how small, is progress. I’ve been down and out enough, whether manic or bottom of the pits of depressed, suffering from extreme panic attacks or all of my chronic conditions are flaring at once, and I can’t see my way out of it. But my love repeats these words to me: “It’s just down season. It will get better.” And it’s true.

You are important. You are loved. You are the world to someone. You are worth not giving up on, and it will get better.

If you or someone you know needs help, visit The Mighty’s suicide prevention resources page

You can find the original article published on “The Mighty” by clicking here!

Stepping Out Of My Blind Comfort Zone

I’ve cried enough tears over the loss of my vision to end the drought in California. The shackles of sadness that held me to the ground as I grieved were rarely unlocked. When I thought about ALL the fears I had, and still have, it paralyzed me. The fear of venturing out alone has been a big one! I just couldn’t picture myself being out and about town on my own…with no one else…by myself! Like everrrr! That would be stepping way out of my blind comfort zone. Yep, *shakes head* too scarey out there.

Personally, I had to build up a strong supply of big girl courage to help bust out of the zone. I needed confidence if I was to attempt a  solo adventure. I know other blind kids do it and I wondered when I would be ready. When would I be strong enough to take the step and leave those shackles behind? 

This morning, for whatever reason, I felt ready. Maybe it was the extra cup of coffee, but I felt  pretty confident about my ability to handle the uncomfortable… alone. It’s not that I don’t like the company or the help of other people…. I needed to do this with just me, myself, and I. Gaining back some of the control that I craved. Well, minus the driving or decent eyesight parts! 

Okay… I obviously can’t drive, so I called Uber. I grabbed my purse filled with a whole bunch of big girl courage, some extra confidence, and my white cane. I headed out of my comfort zone and into the wild blue yonder, where the sweet smell of independence fills the air. Where the magic happens…. so I’m told.

I went to my local shopping center, a place I know pretty well. Unfortunately, with the vision I have, my confidence was challenged. Good thing I brought some extra confidence with me! Pheeew! I walked by storefronts, concentrating on which store was which, or what I remember them to be. I walked across the parking lot… not once, but twice! It wasn’t busy…so that really helped with my huge fear of getting hit by that car I didn’t see! I asked for assistance in each store and I kept my requests simple. Baby steps.

where-the-magic-happens-your-comfort-zone_daily-inspirationWith a grocery bag, a coffee, and my cane in hand, I caught an Uber ride home. That ride gave me a moment to think about what I just accomplished. I could feel the emotions rising up from my rotten little core. The flow of tears were coming on, not because of the fear I felt with vision loss. NO, not THIS time. I was emotional because of how FEARLESS I felt with vision loss. This little trek out of my blind comfort zone, was one of the biggest leaps I’ve taken as a Girl Gone Blind. Yep, *snaps fingers* and that magic is mighty fine!

8 Things You Shouldn’t Assume About A Blind Person At Social Gatherings

I understand it’s hard to know how to accommodate or communicate with someone who has little to no vision. I didn’t know about any of this “blind etiquette” stuff until I lost much of my own vision 3 years ago.

I’ve always enjoyed going to social gatherings. For me to enjoy the various get-togethers now, I want to feel as mentally comfortable and physically capable as I possibly can. Here are some helpful hints on what you should never assume about us blind kids based on my own experiences. I don’t expect everyone to relate to these, but I do suspect many will!

1. You shouldn’t assume that we know who you are when you approach us. A hug and a hello is nice (or a little creepy), but, who the hell are you? Please talk to us before you touch us. It is so annoying to me when people assume I want bodily contact from them. I finally wrote a separate blog about this very situation …Check it out: “Talk Before You Touch!”.

2. You shouldn’t assume that we know when you are speaking directly to us in a group situation. If we don’t answer you, it’s not because we’re rude or dislike you.  99% of the time, it’s probably because we have no clue you’re talking to us! As for that other 1% – I’m totally ignoring you in hopes you go away. It’s helpful if you say our name before you direct the conversation our way!

3. You shouldn’t assume that we know who is sitting next to us or across the table from us. We feel so much more comfortable when you let us know who is sitting with us! And I am begging you, please don’t make it a game of “Guess who?”.  Honestly, that game gets old real fast!

4. You shouldn’t assume that we know who is in the room when we enter it. First and foremost, don’t drag us around to each and every person like we’re some sort of oddity. That is embarrassing and not needed. We would prefer you to quietly give us the rundown on who’s who, so we can form a mental picture of the room. Standing in a room full of unidentified voices is very uncomfortable.

5. You shouldn’t assume that we want to remain seated OR stand in one place the entire time. We might want to mingle and we can do it safely with your guidance. If it’s not a familiar environment… we often feel “trapped” in a particular area, because we can’t “see” well enough (or perhaps not at all), to move about any party obstacles. Offer to escort us to go outside or inside, to another table, to the bar, or go bust a move on the dance floor! 

6. You shouldn’t assume that we need our food cut up.  Usually, I am capable of doing this for myself, It’s not pretty, but I will always give it a go. If you see we are struggling, discreetly ask us if we would like your help. Don’t embarrass us in front of others by reaching over and announcing that you are going to cut up our chicken for us. For. the. love. We’re not toddlers!

7. You shouldn’t assume you need to talk louder in order for us to understand you. We can hear you, we just can’t see you. Unless you know the person is also hearing-impaired, there is no need to change the manner in which you speak to us. No need to change the volume or tone. No need to shout or slowly enunciate every. single. word. Yeah, don’t. We will avoid you at all costs.

Please don’t assume anything about a blind person. The one thing you can assume is that we are blind. That’s it. We know what makes us comfortable or uncomfortable. We know what we are able or not able to do. We know what we want or don’t want. Ohhh, wait, I almost forgot number 8!! 

8. You shouldn’t, ever, under any circumstances, assume it’s ok to give us the damaged dessert. Don’t try to slip us the mangled macaroons, burnt brownies, crushed cupcakes, or a shitty scoop of sorbet – just because we can’t “see” it. And, if you serve us a skimpy sliver instead of a hearty helping of any dessert… Oh, honey. Don’t even. Or we’re gonna have a bit of a situation right then and there!!