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!

---

To 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”.