“Birthdays are good for your health. The more birthdays you have, the longer you live.” Good one! Right?!?
Well, TODAY’ is another birthday for me. It’s also my 2nd blind birthday. I really can’t believe it’s been almost 2 years since I was diagnosed with LHON and became legally blind. It’s been a long 2 years, but, life is slowly getting better. Thanks to the support and inspiration I have received along the way.
So I’m turning 52 today, hard to believe I know, and I got to thinking about what I’ve experienced over the last year. Let’s see, I am still learning skills for independence and adjusting to doing things differently. I don’t think the “adjustment” to this blind thing will ever end! Some adjustments have been purely mental, and some just physical. Some days have been easy–peazy and some were incredibly difficult. Whatever the situation or challenge might be, it seems I manage to pick up a few more pieces of me.
What else? I cried less and laughed more, I conquered some fears, gained more confidence, and nailed a few more blind girl skills. I’ve met some great people who live with LHON, or another type of vision loss. These folks inspire me, and continually demonstrate that having vision loss doesn’t mean you’re a total loss.
Now, I’ve already written about a lot of my experiences in previous blogs, so I’m not going to blab on about all that crazy shit again. Whaaa? YOU haven’t read about any of them? You better click on “Maria’s archives” right now, and catch the hell up on my business! Anyway… Many of this past year’s moments have helped me believe, and reinforce, the truth. Truth is… my vision loss doesn’t mean I’m a total loss! I AM able to be a valuable part of this life. You know what they say…”The truth will set you free”! Set. you. fucking. free!!
Wow. This realization gave me back some confidence and control. My life wasn’t lost, It was just buried by mental doom & gloom. So maybe I can’t drive, make perfect pinterest cupcakes, or paint my fingernails. Are these tasks really that important in the long run? Well shit, driving is pretty important and I will always miss it, but, there ARE other really important things I can still do. I can listen, talk…a lot, teach, laugh, support, love, and live. Any person going through vision loss still has all those gifts. Truth is… Life isn’t a total loss because we were hit with LHON or another type of blindness. We need to believe that for our own sanity! Every damn day!
Thank you to everyone who has been a part of my life over the last 2 years! You have inspired, taught, supported and helped me believe the truth. I am not a total loss so don’t send me to the junkyard quite yet!! This unexpected life will continue with more better days and birthdays!! NOW, where’s my damn cupcake??? ♥️ xx
“If I use a cane… then the whole world will stare at me. I will look like a BLIND person! I’m only sorta kinda blind. I can see contrast and blurry objects, so I’ll be fine without it. I don’t want to hold a cane, It just stresses me out. White canes and ugly sunglasses are not for me. What if my friends see me with it? They will look and whisper… “OMG, Look at Maria! She must be really blind now… she needs to use one of those things, you know, a white cane!”
That’s what I used to think. Yeah. I didn’t understand what a mobility cane was all about. It was just a horrible, horrible thing that I didn’t want to talk about! Did you read the GGB blog I wrote last year? (“That four letter word…” ~ March 2014) I was anti-cane all the way! Well, I now know, at least for me, those anxious thoughts were part of the first stage of “white cane acceptance”.
Nobody who has just been told they are legally blind starts using a white mobility cane that same damn day. It just doesn’t happen like that!! Seriously, nobody in their right mind dreams of using a white cane OR going unexpectedly blind for that matter! Just. doesn’t. happen. So, at the risk of sounding like a Girl Gone Bad….my blog, I’ll take the risk. If YOU had no issues with grabbing a white cane and skipping happily down the road the same day you were told you were permanently blind, YOU are fooling no one!!! Now go back to stuffing down your true feelings with a dozen denial doughnuts! You might want to try therapy or a support group… it’s healthier and less calories… Just sayin’.
Anyway…I know some folks can safely manage getting around 100% of the time using only the low vision they have. Many people with LHON can do that, but not me. Some folks are okay relying on others to grab, push, or pull them in different directions to keep them safe in busy places. I toootally thought I would be okay just relying on others to guide me and keep me out of trouble. Well, not so much. I grew soooo tired of being handled like a runaway toddler! I always try my best to dodge the obstacles around me using my low vision. Sometimes my best doesn’t quite cut it. People and objects appear out of the blurry fog (I.e. my vision) too quickly for me to react and get out of the way. These days, people are busy on their phones, rude, and nobody has time to watch out for a blind girl! Especially if they can’t tell that I’m blind! Situations can get stressful for me and for the friends or family who are trying to guide me. It took me months to realize that using a cane would remedy some of these stressful times.
My decision to start using a cane was made in stages. I’ve been through them all at this point and It was not an easy process. I can break down the process of “white cane acceptance” into four stages. I’m not going to explain each stage in great detail because that would make this long blog even longer! So, since I don’t want to bore the shizzola out of you, I’ll keep it simple. Please keep in mind… these “stages” may differ from yours, but this is how I see it!
Stage 1: DENY the cane. A cane? Oh hell no! No Thanks! Canes are for those other blind people. You don’t want anyone to see you with one. Don’t talk about it. Don’t touch it. You’re sure you’ll never have to use IT! Newly blind and in denial is a safe, yet dangerous place to be.
Stage 2: CONSIDER the cane. The other cool blind kids say that the cane gave them back their Independence. They were more mobile. They felt confident and safe going places. The cane would keep them from walking into a tree or a person. The cane gives them their independent life back. Wow. Get my independence back? Hmm, that sounds really, really good!
Stage 3: TRY the cane. Other blind kids use it, how bad could it be? You make the call to an organization that offers orientation & mobility training. You take the leap and start training with an O & M instructor. You sit through an hour of “Show and Tell” as the instructor explains the different types of canes. (Who knew there were so many?!?) You pick one. You go out of your comfort zone as you hit the streets. The sick feeling in your stomach dissolves as you create the confidence you need. Each training opportunity forces you to experience the benefits of using a cane.
Stage 4: USE the cane. Just as vision loss has become a part of your life, so has the cane. It’s an accessory you never knew you needed (I also need a Tiffany necklace, where’s that?), and you bring it with you wherever you go. Your cane will see the obstacles and people will see the cane as you walk independently. There is less stress and anxiety for you and whoever you’re with. You might EVEN order canes in different colors. Why? Because you CAN! (Yep, I bought a pink one and a blue one!) If you have to hold it, why always carry basic black? So boring!
Okay… there ya go! I suspect many of us blind kids can relate to these 4 stages. (If you don’t, go back to eating your denial doughnuts.) Learning, accepting, and using a white cane takes time. Lots of time. I needed to go through the stages and you might too. If a mobility cane may be of help to YOU, and YOU decide it’s time to tackle this damn thing…. Go for it! It’s not as bad as you think! Trust me, YOU will work that cane like a Rock Star when YOU are ready!
Teaching my group fitness class was a little rough today.
The peeps in my Monday R.I.P.P.E.D. class, (see photo) were so awesome and supportive this morning! Their energy never dropped even when I admitted I was struggling. No, NOT because I couldn’t keep up….oh honey, pleeease…I’m the instructor!….because I started feeling “motion sick”! Like “bring me the trashcan” sick, right in the middle of class!!
With vision loss, motion sickness has become part of my life. Sometimes the brain and body are movin’ and the vision is like ” Huh? what the hell? which way are we going?” My eyes are not able to give the brain any (or very little) information because my optic nerves are not fully functioning anymore. Thanks LHON! I know this isn’t a super sciencey explanation, but, I think I’m pretty close as to what happens with me.
After I explained my blind girl sitch, I restarted the music, took a deep breath, and said “Okay guys, I got this…Nothing is going to keep me from teaching my classes!” At that moment, the class gave me what I needed. They erupted in applause, “Whoots, Yeahs, and Hollas”!! Wow, Oh Wow… I immediately felt like I was wrapped with comforting support by these caring, and sweaty, people as I stood there looking at the front mirror with my back towards them. My “spidey senses” picked up a gentle pressure on my back, like hands holding me up. The presence of positive vibes, invisible energy, or whatever you want to call it…. helped finish the class.
The gym members are usually the ones that are thanking me for a great class & kicking their butts! Honestly, I could not continue this job, especially now, without all of them…I know they got my back! Today was a perfect example of that! Love ALL my R.I.P.P.E.D.sters and everything they do for me as their instructor!
I went to a concert last night. I was looking forward to seeing one of my long time favorite female artist! I love listening to live music and watching action on stage. Who doesn’t love the WHOLE concert entertainment experience!?! It’s what we pay for! Right? Well, this concert left me with mixed feelings and struggling with my new reality.
As I said, I was thrilled to go see one of my favorite singers, as I have done many times! As the night went on, it was hard for me to stay in the moment. I was fighting with the thoughts that I could NOT “see” the singer Or band rockin’ the stage. Why? Because I’m legally blind now.
I still have a difficult time functioning mostly auditory when I’ve always absorbed life visually! So now I let my brain fill in the images as I try, try real hard, to dial in on the music. Gotta tell ya… let’s be real here… I’m missing so much of the visual show and that’s upsetting! Sure, I could get tickets for the first row or use binoculars to get some sort of view. I suspect that’s what many people in my position do. Okay. Fine. Whateverrrr. It’s just not the f*cking same as it used to be!! No one wants to miss the visual pizzazz of the performance!
Do I need to lower my expectations because I’m blind? Are concerts or any live show going to be a love-hate thing now?? Yeah, yeah, I have to experience things differently now… blah, blah, blah. I know, I knooow! < Insert pouty face here > sheez.
I felt compelled to share this with all of you with a hope of bringing awareness to distracted drivers.
I’ve been legally blind for nearly 3 years. Today was the first day that I sucked up my pride, grabbed my walking stick (you know the thing that screams, “I’m blind!”) and headed to one of the busiest streets near my home. This came after months of walking through my neighborhood for both exercise and a reclamation of my independence.
I’ve learned a few things on my daily walks. Never go on the weekends, sidewalks are extra busy on the weekends. This includes both people and dogs. Never let your best friend know what you’re doing… they’ll think it’s funny to pull over, jump out, and scare you! Finally, you must get use to the sounds of nature because headphones can sabotage a peaceful walk quicker than anything.
Today I worked up enough courage to cross Kirby into Lincolnshire Fields Subdivision to visit my grandparents. I stood there with great anticipation, kinda how you feel when you’re learning to drive or when you’re up to bat in a big game. I stood there listening for a solid 2 minutes. I looked both ways…yah, I know that doesn’t help when your blind…held my cane out to make it visible, said a prayer, and went for it!
I knew that I was clear one way because I could see a car in my peripheral vision that came to a stop to let me go. Next thing I knew, a car from the opposite direction flew into sight and literally missed me by 2 feet! If there was ever a time to shit your pants, NOW was the time. If there was ever a time to feel defeated by a physical limitation, NOW was the time. if there was ever a time to spread the word on the importance of being a cautious/proactive driver, it’s NOW!
I regained my composure, made it to my grandparents and patiently waited for a ride home. This incident controlled my thoughts the rest of the day. I haven’t given an update lately on my situation, but I feel compelled to share this with all of you with a hope of bringing awareness. I feel strongly that the person who nearly made a hood ornament of me was distracted.
Neil Cox lives in Champaign, Illinois and was affected by LHON a few year ago. He is a loving husband and father to two young boys.
It’s no secret. I’m not a very good cook. Actually, I’m a horrible cook. And NO, it’s not because I’m blind. I just seriously suck at cooking. Perhaps it’s because I’ve just never had any love for the art of cooking. Paper goods or drinks are my specialties for every damn party, School event, or potluck! Don’t judge, I KNOW you’ve done that too! Truth is, I wish I never had to cook again. Ohhh…life would be a dreeeam! Well, until my fairy godmother grants me my wish for a delicious personal chef, I need to learn some sweet blind skills for the kitchen! (Seriously though, where is that fairy bitch when I need her!!)
I felt I was ready….well, sorta ready to take the next step. What was the next step? Go hang out with other blind people. Like hang out for a whole day, once a week, and get a taste of what I’m supposed to be doing now that I’m blind.
Last January, I started attending classes at the Braille Institute. Although I’m 50ish years old, I felt like a 10 year old walking into the first day at a new school. You know… don’t cry, find your class, make new friends, hope you can sit with the cool kids at lunch, and wait for your mom to pick you up at the end of the day. Yep, it was just like that and it was hard. It was hard to be in a new place surrounded by people who’s faces you can’t see. Trust me, it took everything I mentally had to keep myself together. They did have coffee to go with my Xanax, so that helped a little bit. A donut would have been nice too! Comfort food people, comfort food!
One of the classes I just finished was “Basic cooking skills”. You have to take this class before you can take any other of the more complicated cooking classes like, … waaaait for it…“Casserole making”! Yes, It’s a real class…12 weeks of casseroles… the husby is very excited about me taking that one!
Besides eating what we made each week, we worked on measuring, cutting, chopping, pouring, mixing, baking, and frying with the use of adaptive or assistive items and utensils. I did grow to love the “Robot” oven mitts they made me wear. HEY, not many people can ROCK those things ya know! We made some meals that may have been burnt, too salty, lopsided, or not very appealing to the eye. …but if I were you, I would just shut up, close your eyes, and eat that shit like everyone else! We learned it’s okay to be a hot mess, have fun, and laugh at ourselves in the kitchen. We learned to be a little more careful and confident in doing the basic cooking stuff we used to do before vision loss. I even made some things I never made before, like Chicken Parmesan, Bruschetta, and Pizza dough! Who knew they were so easy to make?! Obviously not me. Hey…Are you silently judging me AGAIN?
This class was an awesome experience and I know it would not have been as amazing without my three sweet OT intern instructors, Alex, Dana, and Rowena, along with my partner in cooking crime “Blind Guy Chris”! Never a dull moment with Chris in the kitchen! Every week, the five of us looked forward to swapping stories and building friendships, sometimes more than the lesson at hand.
I DID NOT find my love for cooking, and I’m pretty sure I never will. You know what they say, “You can give a girl a recipe, but you can’t make her cook!”…..OMG, That’s brilliant! Write that one down! But, I DID find new friends, a few skills, and a yummy recipe or two. All good stuff to help me move on through this life as….Girl Gone Blind.
I have a valid drivers license and a car. I have LHON and I’m legally blind. Soooo, the license and car really don’t do me any good, because I can’t drive. Well, wait… the license is a great form of ID and allows me to buy bottles of good wine. For the love of GGB, if I can’t drive, Let me keep the little things…. pleeease!!!
Now until they make driverless cars available,…I’m so getting one… I have to rely on other forms of transportation. I am incredibly lucky to have friends and family who are willing to drive me or my kids to places we need to go. Damn lucky and grateful! But, the truth is, sometimes I want to get to places BY MYSELF!!! Go out on my own, on the open road, rockin’ down the highway, like I did for 34 driving years. It’s still hard to believe that I can’t drive… Shit, I still can’t believe I’m blind.
A loss of any kind can be devastating and motivating at the same time. It really can be. Is easy to let devastation run-amuck in your head and take over for days. It’s hard to dig up the inner motivation to move forward….to push that “devastation biatch” aside like an episode of “Jerry Springer” and kick some ass! Trust me on this…..When you get tired of feeling like a prisoner in you own vision loss dungeon of doom, you will find the motivation to get up and out. You will want to break free, you can taste it, and ONLY YOU CAN MAKE IT HAPPEN!!
I wanted out. I broke free. I got on a bus by myself! Yep, I finally rode the local MTS Access bus for people with disabilities. I had them pick me up at my house and take me to the Braille Institute where I take classes. It’s only about 6 miles, so I thought it would be an easy first trip for Girl Gone Nervous! So, how was it?? It was not only easy, but I met a new friend who also goes to the Institute on the same day!
What a BONUS! Her name is Desiree, and she was cheerful and a delight! She was full of encouragement and the universe could not have placed a better person on the bus with me that day. The positive energy I felt from her brightened my morning, and bus ride. It was a great experience to help rebuild my self-confidence. Nothing says confidence like a “GGB Selfie”! Right?!? Ha ha!!
Scheduling and riding that bus was another step towards personal mobility and independence! YAY!! If you want to meet for coffee at Starbucks, Let me know two days in advance so I can schedule my saa-weet ride! Not exactly spontaneous, but, I’ll f*cking take it!
“The broadest, and maybe the most meaningful definition of volunteering: Doing more than you have to because you want to, in a cause you consider good.” ~Ivan Scheier
Volunteering is something I have always done, as have many of my friends and family members. This weekend, a handful of them came out…at the crack o’ dawn…to volunteer for a good cause, my cause, LHON research. We watered and cheered on the runners at the annual Tri-City Medical Center Carlsbad Marathon and half-marathon! It was a great time and team effort!!
My friend and amazing LHON advocate, Lissa Poincenot along with her family, have managed the LHON Project ”water support station” at mile 14 for a few years. By giving our time as part of the race support team, the race gives back to nonprofit organizations. In our case, the LHON Project, which funds ongoing research for a treatment or cure for this disease. Works for me!
Thanks to everyone who came out to volunteer for my cause! You did more than you had to, because you wanted to. That means so much to me and many other people around the world who live with LHON. I expect to see you all in January 2016 with water in your hands…err,umm…well, I won’t exactly “see” you… doesn’t matter, just volunteer!
Big Blogger Hugs to this year’s GGB volunteers!
My family ~ Chris, Molly & Bryce.
My wonderful friends ~ Kate, Jeremiah, Reid, Finn, Rosa,
Diane, Tammy, Jacob, Jimmy, Natalie,
and Jon Dator, who also lives with LHON.
Love you guys! xo
One year ago today, I told the world the real truth about my vision loss.
One year ago today, I told the world about being recently diagnosed with LHON – Lebers Hereditary Optic Neuropathy.
One year ago today, my blog was born! Happy Birthday Girl Gone Blind!
I want to celebrate this day by thanking my family, friends, and LHON family for supporting my blog! The tears and laughter (and F-Bombs) we have shared were more than I ever expected when I posted that first blog and hoped somebody would read it! I had 20,000 hits on my site in the last year and that just blows me away! Every person that stops by GGB is giving me a moment of their time… what a gift!
I absolutely must give extra warm and fuzzy hugs to my dear friend and website designer, Miko Radcliffe. Her patience (I can be the biggest pain in the ass), knowledge, and talents has given GGB a purposeful life! A life that helps steer me towards whatever the universe has planned. I can never thank her enough….never.
I took a chance and told the world…now Girl Gone Blind is one-year-old! I hope you stick around for another year in my unexpected life!
Now, let’s eat cupcakes…with that sugary buttercream frosting of course! …xo
Fortunate. Fantastic. Frustrating. Fail. These are words I would use to describe my dictation experience over the last year.
While I work on the typing skillzz, my e-mails, text messages, social media posts, AND this bomb-diggity blog are currently created by dictation, along with speech, and voice over. It’s a process.
I am FORTUNATE to have dictation as a part of my assistive technology tools. Dictation is FANTASTIC because it allows me to stay connected on all my devices via voice… and you knoooow how I love to talk! Blah, blah, blah…all day, all day!
Using dictation can be a little FRUSTRATING at times. Well, maaaybe even ugly. yeah… blind girl tizzys and technology timeouts be happenin’ over here! It drives me crazy when I have to repeat a word over and over until it types out the the actual word I’m pronouncing! It can be downright weak dick kill us!!
That brains me to the surprising fart of dictation. The crazy word or words that dick station thinks I’m saying… which I’m not!… I call a dictation FAIL! Stop! Just for the record, I’m not drunk dictating. Friends don’t let blind friends drink and dictate, Right?!? ha ha! Okay, okay… can you see or hear how my innocent words turned into FAIL? OH that silly dictation!!!
Let me throw out some of the more precious examples for y’all! If you dictate anything, you will relate! Note: I’m not holding back on the profanity here. Dictation has a potty mouth!
French horn = French porn
It’s = tits
Tizzy fit = dizzy tit
So excited = so X-rated
Bitchy blind girl = witchy blonde girl
Focus = so kiss, but this,
butt guess, phone sex, fuck yes
Focus Friday = fuck it’s Friday
Blind happiness = find hat penis
SAY WHAT?? Yup! I swear! These little gems have popped up in my dictations. Some of them sound like the drinks your friends bought you on your 21st birthday! yikes! Hopefully you will never see any of the dirty faux pas, because I’m a recovering perfectionist and a quick bitch on those edit, change it and delete commands! C’mon… I keep the blog shit classy here at Girl Gone Blind!