What's The Good, The Bad, and The Not So Nifty About Going Blind at 50?

So, what’s the good, the bad, and the not so nifty about going blind at 50? Oh, I CAN tell you! How much time do you have? An hour, or two, or twenty? Ha ha! Well, last week I spoke with Tara Briggs, the host of “Ability Stories” Podcast. We had a great conversation, which made not one, but TWO great podcast episodes for your listening pleasure!

Tara contacted me a week or so after I published my last blog, “Thoughts for my child Who now has a blind parent”. Being a blind parent herself, she wanted to hear my story and possibly talk a little bit about this recent blog post, which had created some chaos in the blind community. I’m always happy to be a part of any podcast interview…I’m not shy. I know! No shock there! But, I made it very clear that I was not interested in any heated debate on the capabilities of blind parents. Nope , nope, noopity, nope. She assured me that that was not her intention, although, it was THAT blog post that caught her attention! After a few more messages… I agreed to do the interview.

Tara was born blind and I was not. That difference between us made for a meaningful discussion. It’s good stuff, so be sure to listen!! MANY thanks to Tara Briggs for her open mind and kind heart.♥️ 

Here is the 2 part GGB interview on Ability Stories: Discussing the Successes, Challenges, and Stories of People With Disabilities In their Own Words

https://www.podbean.com/media/player/efk5j-69a778&?from=site&skin=108&fonts=Helvetica&auto=0&download=0&share=1

https://www.podbean.com/media/player/bh87t-69a781&?from=site&skin=108&fonts=Helvetica&auto=0&download=0&share=1

To find more stories with Tara Briggs, please visit: Ability Stories Podcast

Thoughts For My Child Who Now Has a Blind Parent

For my child who drives to pick up their siblings because I can’t drive.

For my child who may need to arrange for a ride from a friend because I can’t give them one.

For my child who says “curb!” without even realizing it when walking with me.

For my child who sometimes counts down those last few steps when we’re going down stairs.

For my child who knows exactly why I ask for their elbow if I need it. 

For my child who offers to place any online order for me because they can do it in half the time.

For my child who becomes my tech support for every device I’m learning to use. 

For my child who reacts like a “hazmat team” and wipes up the glass of water I knocked over.

For my child who cares enough to tell me my sweater is inside out after I swore I checked where the tag was.

For my child who has had to help find my damn sunglasses, purse, phone, headphones, etc. because I didn’t put them back in my “designated” place.

For my child who stands in the store aisle and smells the candles with me, just for fun.

For my child who will read the menu to me if I ask them.

For my child who will figure out any issues with my phone or computer because they are good at it.

For my child who answers the hundreds of times I curiously ask “What’s that?”.

For my child who laughs at my comedic “Blind mom” jokes…because laughter is the best medicine!

For my child who eats the dinner that looks like a delicious disaster at times.

For my child who allows me to feel their new haircut or the shirt they’re going to wear.

For the child who had to learn how to describe unique colors, patterns, shapes, and sizes of just about everything in our surroundings.

For my child who wishes I could get my vision back.

For my child who is not embarrassed about my disability.

To my child who is proud of me.

For my child who’s friends don’t believe their parent is blind.

For my child who wants at least one friend to understand their life.

For my child who ignores the people who stare at us as I walk with my white cane.

For my child who tries to be strong when I an not.

For my child who feels the need to protect me when confronted with the uneducated views of blind people, because they now have a blind mom.

For my child who felt frustrated with me and didn’t know how to express it to me.

For my child who is doing their best to come to grips with a parent’s unexpected vision loss.

And…for my child who thinks I’m pretty badass for never giving up on myself after I was diagnosed with LHON in the middle of a busy life.

 

 My precious child,  there is something I want to tell you….

I know this may not be the life you wanted, but this is the life we now have as a family. I appreciate all the extra things you do for me… things that most of your friends never have to do for their sighted mom or dad. You have to grow up a little quicker, adjust a little faster, and cope a little better. Those are some big responsibilities for you to carry at any age. You are my child and I will help and support you, because that’s what I’ve always done.

Living with a blind parent will have an effect on the kind of person you become. I hope you see that the ability to ask for help, as well as graciously accepting any help, is a sign of strength…not a weakness. Don’t be too afraid, too shy, or too stubborn to ask for, receive, (or give) a helping hand. 

The compassion, empathy, and kindness you learn in our new family dynamic, will be some of your greatest attributes later. That’s a good thing, I promise! I will never let my vision loss get in the way of being the best parent I can be for you. Thank you for helping and supporting me as I rebuild a fabulous life beyond the blindness. Love you for always!! xoxo

Please read:

*This blog post was edited on 3/27/2017 to better reflect my intentions. My account of my children’s experiences should not offend anybody.  This blog post does not reflect anyone else’s experiences, abilities, or competency as a blind parent. I am not speaking for anyone else but myself… as a mom who went blind, in a matter of months, at the age of 50 (3 years ago). My children read this blog post before I published it and they said it was pretty accurate to them. That should’ve been my clue that this was reflecting MY family’s experiences… NOT that of my fellow blind parents and their children. The original post was too generalized.  I never ever intended to offend or angeranyone in the blind community, or give our families a bad rap as was suggested in recent comments. That’s not how I roll!!  Instead of succumbing to the angry threats or taking the blog down as requested, I opted to make edits to further personalize and clarify the intention of the post. I hope this will calm the storm. I truly meant no harm. 😄 ~ Maria

Please listen:

Click “Thoughts For My Child who Now Has a Blind Parent” ~ a discussion about this blog post on RNIB Connect Radio (17 minutes)

 

Podcast Picks To Inspire You To Dream Big… Not Blind

Since losing vision, I have had a hard time getting into the audiobook thing.  My mind wanders, I get bored, and I feel like I should be doing 14 other things besides listening to a 250 page novel. I don’t have a favorite author or genre, and perhaps that’s part of my problem. I needed something that was going to hold my audio interest! Something with pizzazz, positivity, and personality. My son suggested I try listening to podcasts. He downloaded a few for me to get started with, and I’ve been listening to them ever since!

Of course I’m all about listening to the blind tech and lifestyle stuff, but I also enjoy anything along the lines of personal growth & development, motivation, and encouragement. If you’re looking for some effortless boosts of inspiration in your day….below are 22 podcasts you might find of interest!  (Compiled by Jessica Sletmo on The Edit.)

By Rachel Gadiel

“Podcasts are my new favorite thing. I love listening to them while I get ready in the morning and find they help with starting the day off on a positive and productive note.

I also love listening to them while I’m cooking or if I’m commuting somewhere – given I did a lot of flying this year, I used to download all of my favorite podcasts and listen to them on the plane – it was brilliant!

I’ve found them to be a great way to get to know my favorite bloggers better, because let’s face it when you hear someone’s voice, it helps makes them that much more relatable and real.

I’ve found myself gravitating towards a select few podcasts that I always check to see if there is a new episode released so I thought I’d share the ones I never miss an episode of.”

Click here to read more….

5 Podcasts To Listen To On Your Morning Commute

By Career Girl Daily

“It can be hard to pull away from Spotify after a day hustling (or in the morning before the hustle gets going, for that matter) but trust me – plugging into a killer podcast is the quickest way to boss your life.

You don’t need to give up your favorite playlist, instead, try this hack – plug-in your music when you’re busy (say working at your desk or sweating in the gym), but when you are free (walking to the station or commuting to work), load a podcast. This simple swap will truly optimize your weekly learning, in time you may not have realized you even had, leaving you feeling smugly productive by the time the weekend swings around…”

Click here to read more….

You Are What You Listen To: 11 Podcasts To Inspire Yourself

By Lifehack

“The key advantage that audio brings us is convenience. We can listen while we’re commuting, exercising, or working, and the growth of podcasts are just starting.

As the popular saying goes, ‘You are who you surround yourself with.’ The same applies to what you read, what you watch, and in this case: what you listen to.

I’m an avid listener of podcasts, and I’ll get my hands on any show that will give me an edge in life. To make your life simpler, here are 11 podcasts to inspire yourself.”

Click here to read more….

Now, go dream big… not blind! xx
~ You can find original blog post here: 22 Podcasts to Inspire You!
Click here to find the podcasts that I’m currently involved in! 

How I Solved Our Family Sock Struggle

Why do family members dislike matching socks so much? Is it just my family or what!?! I did it for years and I didn’t like it either! But, I guess I had to do it because I was the “Mom”. After losing vision, this was one job I was fired from due to my lack of matching skills. Typical me, I tried to match by feel & shape of the socks, but it wasn’t working out so well. (I was actually thrilled to be fired. Yahoo!!) The family soon got snippy over searching for matching socks on the daily! A sock solution had to be found!!

 Now, I may be late to the blind party on this one… But I found a product that solves the family sock struggle. It’s called “Sock Locks”! These small wonders seem to make life a little less stressful for everyone!

Here’s a little bit about Sock Locks:

  • Easy to use! Just pair socks with a Sock Lock prior to laundry to prevent sock loss.
  • Most socks fit in a single Sock Lock.
  • Safe for washing machines, dryers, and frustrated family members.
  • Sock Locks will stop the constant struggle over mismatched or single sock situations.
  • With proper use, Sock locks will prevent any blame from being put on the blind family member
  •  Sock Locks cannot guarantee a stress free family, but it will guarantee matching socks!

If your family dislikes the chore of matching socks or refuses to play “Match That Sock!” on family game night, then I highly recommend this product! Give them the “locks” and be done with matching the focking socks! Click here to find Sock Locks on Amazon. xx 

Together Is Better – 4 Tips For Guiding Blind Walkers

Maria and her guide walker tethered together

A long brisk walk on a warm and sunny morning. That is something I love to do when I’m not teaching group fitness classes at the gym. I hit the hills alone with my thoughts to keep me company. Alone. All alone. Well, that’s how it used to be.

Walking is a great activity for many, even for those who are legally blind. I prefer a long power walk over a short run any day. Personally, I believe that you’re either a runner, or you’re not. I’m not. And that whole “runner’s high” thing… what is that?  I never, ever, felt it.  Perhaps it’s because I would silently chant “I hate this, I hate this…” with every mile I ran. I eventually stopped running and scaled back to power walking. If you’re blind, and you want to get outside, feel the sun on your face, and increase your activity level (not by running), you might want to pair up with a sighted guide and walk off your worries!! I understand that not everybody needs a guide, but if you do, just ask a friend, co-worker, or family member to accompany you.

So, you may think you know what to do as a guide. How hard could it be? Just grab ‘n go, right? Uh… No! Trust me, you’ll probably regret that approach at some point and it won’t be pretty.

From a blind walker’s perspective, here are 4 simple tips to help make your experience as a sighted guide an enjoyable one. At least I hope they do!

1. Visualize Their Vision Loss. ~ Don’t be afraid to ask your walker about their vision. It’s helpful to understand if the person you’re walking with has any usable vision. Most people who are legally blind have some vision. For instance, they may be able to see contrast or the shape of people and objects around them. They might only have some peripheral or central vision, or no vision at all. You will need to take their level of vision into consideration when communicating during the walk.

2. Try A Tether When Together. ~ This may seem weird, but get over it! A tether is a valuable “tool” held between the guide and the walker. It helps the walker to feel secure as they stay aligned with you. Some may also feel the hint of a change in direction or walking pace through the tether. (Remember, we’re not running!) …..Oh…and don’t eeeven think of calling it a “leash”, UNLESS you’re willing to carry treats in your pocket! FYI, I prefer dark chocolate….. Try different ways of “connecting” to each other. For example… you can use a shoe lace with each end tied into small loops, a rope with knots at each end or tie the ends to make a large loop. Figure out what material and length will work best for you and the walker. Get creative and colorful!

3. Explain The Terrain. Communication is really important. Seriously, you need to be a good talker to be a successful guide walker. You will want to think about the language you use to describe the terrain and obstacles, or when passing other walkers, runners, or cyclists on the road. For example, you can use cues like bumpy, uneven, rocky, uphill, downhill, turn right, turn left, tree branches overhead, curb, quicksand, pub on the right, or glass of wine on left, etc. etc…okay, okay, no one has offered me a glass of wine on a walk……….yet! Well, I’m sure you guys get the idea! Just keep your descriptions clear and simple.

4. Don’t commit if you’re not a fit. ~ Please don’t feel obligated to say “yes” if asked to be a guide. If you are not comfortable with the idea, then don’t do it. It’s okay. It’s not a BFF issue, it’s a practical and confidence thing. We just don’t want to be tethered to a hazardous hot mess, all because you couldn’t say “No”. Feel free to offer when YOU are ready!

So, if you’re interested…it’s a great opportunity to get outside, breathe some fresh air, feel the sunshine, and hit the pavement with your favorite blind buddy! xx

 

My Mom Went Blind and My Life Began To Unwind | Molly Johnson

Being 14 years old already sucks enough or at least I thought it did. Then throw in your mom going blind within a matter of 8 months…it was more than this young teenager wanted to deal with. Adding that into my melting pot of teenage problems, I felt like my life was beginning to unwind. I say problems in a loose fashion because in all reality there weren’t big problems, but to a fourteen year old girl they were. It was the end of the world if I didn’t get to see my crush in the hallway and in my mind that was equivalent to my mom going blind. Probably the worst part was trying to explain this to my friends, who were all also freshman in high school, you can imagine how that went. No one understood what was going on and the most hurtful thing was that some people didn’t believe me.

Rewind to 4 months before my mom was diagnosed, we went on this week long Disney trip with our entire family, it was and still is my fondest childhood memory. It’s kinda crazy to think about how it all landed perfectly for us to have one last trip before, in my perspective, life. hit. the. fan! As my freshman year flew by, I almost felt numb with everything that had happened, it was like I wasn’t even in my own body, I didn’t recognize my own life. This feeling went on for a while, then there was one specific night that I remember just completely losing my sh*t, I was in full hysterics and layed in my moms arms as I cried out to her “ I’m so sorry this is happening to you”. This was the first time within the first year of this happening that I cried about this.

Wowza! This blog seems depressing but I promise you it’s about to get better. Fast forward to sophomore year , things are still tough but I’ve TOTALLY accepted it by now (well I thought I did) but but really I’ve just now fully accepted it recently. Honestly this whole situation has made my mom and I pretty much best friends, we now have too many inside jokes to count. There is this one where we have this special laugh for each other, if you’ve seen The Grinch, think of his “laugh” and that’s pretty much it. Even though she can’t see me she knows my mood at all times, she can tell the type of day I had at school by the way I simply walk into the house. Recently I got my permit and I FINALLY drove my mom to the local grocery store which is less than two miles away and boy that was an experience. But honestly it was a huge step in her having trust in me and I felt it was a big milestone in my life and hopefully in hers as well.

Long story short, my mom’s blindness kinda sucked in the beginning but now it’s just my life.  It could be so much worse, so I honestly wouldn’t have it any other way. Dealing with this has made me into the person I am today and I like this person. This person is feisty, strong, courageous, caring, brave, fearless and loving. This person is me. I’m Molly… the daughter of GGB.

unnamed-1GGB note: I was thrilled when my daughter wanted to write a blog post for Girl Gone Blind! Molly is now 17 years old and a senior in high school. I am incredibly proud of her and the strong, empathetic, and independent woman she is becoming. Love you bunches Molly! xo

Who is Girl Gone Blind?

Who is Girl Gone Blind? How did I get to this point? What’s my deal? Have you ever heard my story?  T. Reid of “Reid My Mind” really captured what it was like to unexpectedly lose my vision in this interview on November 30, 2016. I’ve never had anyone take my words and present it in such a creative way! Take a listen, I guarantee you will agree…. It’s the Bomb–Diggity!

Be sure to listen through to the end where you’ll hear “I Got This” that TReid mixed from parts of our interview. It starts at 10:03. If you don’t know what that means, just click on the track at 10 minutes and 3 seconds!


10891593_10203632563031758_7163981411506947269_nTo read more from T. Reid, check out his website at Reid My Mind.


 

Transcript

TReid:
What’s good everybody, it’s me T to the R E I D!

I’m feeling good today and that’s by choice not by circumstance… let that marinate.
And in this latest episode of Reid My Mind Radio I’m featuring a piece I did for Gatewave Radio…

Check this out!

[RMMRadio Intro]

TReid:
Going blind is a real challenge.
Different for anyone who goes through the experience. It involves adjustments for almost every aspect of a person’s life.
Education, Employment mobility and independence.

Today you will meet someone sharing some of her experiences online, on the internet via her blog.

 

TReid:
Girl Gone Blind, is Maria’s space on the internet, her blog where she’s been sharing experiences, observations and information about her life as a, well, girl who has gone blind.

Her story begins in April 2013.

MJ:
I was working as a fitness instructor. I was working at three different locations and I was also running my own Boot Camp as well as doing the mom things – running around taking my kids everywhere you know volunteering and all that stuff. And I noticed there was a blurry spot in one of my eyes but I didn’t really think too much about it cause I was busy and After a month or two it really wasn’t going away.

TReid:
TReid
With no changes in her vision, she sought an answer.
Multiple optometrist, ophthalmologists ; all trying different tests…
MJ:
… many scans, MRI’s spinal taps, steroid treatments, they could not figure out what was wrong. I was completely healthy except there was a problem with my optic nerve.
>

TReid: Finally, she found a neuro Ophthalmologist who tested her DNA. In September 2013 Maria was diagnosed with LHON.

MJ:
Leber’s Hereditary Optic Neuropathy. It is a mitochondria mutation that is passed down from the mother’s side. When the mutation is triggered you start to lose central vision. It can spread into the peripheral a bit, but most of the time your peripheral is saved.

Treid:
Within a month of receiving the diagnosis, Maria was legally blind.
Her response?!

MJ:
Ok, Now what?

TReid in conversation with Maria:
So you started experiencing vision loss and then you decide three months later you know what, I’m going to do this in public! [Laughter from both]

MJ:
Yeah, I know right!

TReid in conversation with Maria:
What made you do that?

MJ:
I thought about righting a blog previously as a health and fitness Guru if you will, but I never did. And so I always had that little bug in me I think.
When my vision loss came to a point where I had to deal with it, I thought you know maybe I should write about this?
Come January I basically wrote about what I’ve been going through and what actually was going on with my vision and what it was called.
I remember clicking publish and thinking uh [exhale] my gosh I hope, I hope somebody reads this. Well I got the hugest response. Positive response on this blog and people loved it!
They loved it and they were appreciative of my vulnerability and my openness to share what had been going on with me over almost the last year. I got the bug right then and there and said you know what I’m going to keep going with this because people like it.

TReid:
There’s no one size fits all plan for adjusting to blindness.
Chances are if a person is losing their vision and seeks assistance, they will learn of the vision rehabilitation system. For those fortunate enough to receive services, it would include personalized training to aid that person to remain as independent as possible.
That can mean getting back to work or school, learning how to perform all of the tasks they once did like cooking, traveling using a computer and more.
Maria figured out what she needed to go through the process.

MJ:
I realized I needed to get my head wrapped around this whole “I’m now blind” thing!
Before I could even attempt to figure out how I was going to you know cook or you know knit or [giggles] all the other things they wanted to teach me.
I thought I need to get my head wrapped around this. I actually need therapy, and I need counseling.

TReid:
Counseling to help work through the barrage of both feelings and thoughts about the loss not only of her sight, but all that comes with that;
her independence, her perception of herself, trying to figure out what it means to be blind.
Loss, is painful!

MJ:
I would lay on my bed you know crying and crying and crying and think [uh, gasp] how am I going to be a good blind parent?
How am I going to be the mom that I was.
How am I going to be the mom that I expect myself to be?

[Soft sad piano music]

MJ:
I honestly was planning on how I was going to exit this world.
And when I would do it.

MJ:
I thought, but you know I can’t leave my kids.

MJ: So I actually did therapy and group therapy weekly for about a year and a half. It helped me to know that all of my thoughts and feelings were totally normal. The things I was doing to propel myself forward everyday were the right things.
I will rank therapy as the number one thing that has helped me adjust to this new life.

TReid:
In addition to the emotional, Maria was trained in orientation and mobility.

I assumed Maria was proficient with technology and probably received training in either magnification or screen reading software.
So I had to ask about something I read on one blog post.

TReid in conversation with Maria:
You use dictation. Is that still your choice of input?

MJ:
It is, it is, it is.

TReid in conversation with Maria:
Do you do any keyboarding?

MJ:
Ok, here’s the back story on all of that!
alright, so I was always a pretty good typist when I was sighted.
Then I’m telling you Thomas, when I lost my vision and I could not see my keyboard any more….

[Fades out and Narration over MJ…]
>
TReid:
I am a big proponent of technology for all. Especially people with disabilities.
In some sense I’m an Access Technology evangelist…
I’ll tell anyone who will listen about the benefits it affords to people with vision loss or other disability.
I’m also a strong believer in the need to be proficient enough with a keyboard if physically possible
in order to have maximum control over your technology.

I did give Maria a bit of a hard time about her reliance on dictation.
But I’m not judging her!

Judgement, that’s one of the things that’s scary about
sharing personal stories.

TReid in conversation with Maria:
Have you regretted anything you published?

MJ:
I’ve made it a real point to keep it to just my own experiences. What I’ve been through. The good the bad and the ugly and the and the crazy , the funny, but then you know there’s nothing to regret.

TReid:
So is keeping an online journal helpful to the adjustment process?

MJ:
I think where it helped me is I was able to put my emotions and my story out there and I knew inside that maybe it would help somebody else either relate or understand what I was going through. And on the other hand, I do feel it hindered me a bit because I was drumming up all these emotions that were really quite difficult for me.

TReid:
Girl Gone Blind has lead Maria to other outlets

MJ:
I knew that if I wanted to start making something of Girl gone Blind I probably needed to get on Twitter and I needed to start reaching out to all of these other avenues. And that’s where RNIB Connect Radio discovered me.
Now I do a weekly segment for them ; chatting with Girl Gone Blind as a Lifestyle Blogger. We talk about different issues and different situations that we encounter.
I also do a podcast, we call it the LHON Report. We do interviews with people in the LHON community and we also talk about our experiences.
This has turned into this wonderful place that I have set myself in and I absolutely love doing it and it’s so weird for me to say that I love what I do and it’s all because I lost my vision.
It’s been a crazy three years but I’m headed to a good place I just know I am and I’m just going to keep that arrow pointed that way and see where it goes.

TReid in conversation with Maria:
Sounds like a great plan

MJ:
Oh And I’m going to learn how to type Thomas…

TReid in conversation with Maria:
Yes! Yeah!

MJ:
Giggles… Goals, Blind goals.

TReid:
There it is! Hash tag Blind Goals. (#BlindGoals)

[Laughter from both and MJ claps her hands!… audio fades out]

TReid:
Maria Johnson is journaling her way through her adjustment to blindness. She’s a girl gone blind, but she’s not traveling alone.

She’s inviting those with LHON , those experiencing vision loss and others to ride along. Hopefully relate to the experiences and maybe even be inspired to continue on their own paths.

Remember that thing about Maria not using the keyboard?
The truth is Maria didn’t let that become an excuse for not starting or maintaining her blog.

She held on to three words that she says can help her through most things…

MJ:
IGotThis! That was my mantra. I got this!

For more on Maria?

MJ:

My website is girlgoneblind.com.
I’m on Facebook at Girl gone Blind
and on Twitter a@Girl_Gone_Blind
And on Instagram @GirlGoneBlind.

TReid:
I’m Thomas Reid

[MJ: It is, it is, it is!]

TReid:
for Gatewave Radio,
[MJ: Ok, now what?]

TReid:
audio for independent living!

Following the Gatewave story, I included a “song” created using Maria’s words specifically “I got this”.