Posts Tagged ‘Independence’

Let’s Stop Sleeping On Sleep

Wednesday, July 3rd, 2019

In this episode, I’m considering how we look at sleep and the impact that the lack of it can have on the adjustment process.

TReid sleeping on a large rock during a bright sunny day while in the background the Niagara Falls flows.

Courtesy of Raven Reid

I share some of my own experience with Non 24 Hour Sleep Wake Disorder and how that can impact the adjustment process and subsequently a person’s independence. Find out how The Dave Chappelle Show relates to all of this.

Just in time for an independence celebration!

Listen

Transcript

Show the transcript

TR:

What’s up Reid My Mind Radio Family?
It’s your brother T.Reid here bringing you another episode of the podcast. You know the one that brings you stories or profiles of compelling people impacted by blindness, low vision, disability.

Today’s episode is one of the occasional times when I share my own experience adjusting to blindness.

It’s one of those things I think many people who are blind deal with but for those of us who become blind as an adult, we really notice the difference. Well at least that’s my experience.

That’s up next!
Let’s go!

Audio: Reid My Mind Radio Theme

TR:

When we talk about the loss of access to things that impact a person’s quality of life following vision loss, transportation, information and career opportunities come to mind.

Here’s one we don’t often consider

Audio: “No Sleep” from “No Sleep til Brooklyn”, Beastie Boys

TR:

Sleep!

Audio: “Last Night, I didn’t Get to Sleep At All”, The Fifth Dimension

TR:

In 2004not too long after becoming Blind, I began having problems sleeping. Real problems. Not falling asleep but rather staying asleep at night. The consequence was I had problems staying awake during the day.

Usually late morning around 11 AM, my body would let me know it was preparing to go to sleep and there would be nothing I could do to stop it. I’d feel my temperature suddenly drop often to the point that I’d shake with chills. I’d struggle to make it to my bed where I’d often fall across rather than in.

It wasn’t just that I was too tired to get into the bed, but I didn’t plan to sleep for long.

Getting into the bed in the middle of the day well I thought that would make me be considered lazy and unproductive.

Prior to 2004 one of my motto’s was I’ll sleep when I’m dead!

Yeh, I was that guy!

Following years of my body being deprived of sleep, I honestly believed the lack of sleep would eventually kill me. I stopped going to sleep as often in the middle of the day. Not because I didn’t feel the need, nah, I had to stay awake when I returned to work.

Working from home, honestly, I could have rigged away to make sleep during the day possible. Occasionally I’d find myself waking up 20 – 30 minutes after putting my head down on my desk for what I thought was a few seconds.

This pattern continued for years.

Even though I was working from home, for me, my body’s need for sleep felt like laziness because I was uninformed.

Fortunately today we have a name for this; Non 24 Hour Sleep Wake Disorder or Non24 for short.

Basically… we all have a master body clock that gets reset every day by environmental light that’s detected by the eye and signals the brain There’s an access issue. For those who are totally Blind, the method to get the reset signal to the brain no longer exists.

Rather than getting into specific details of Non24, my purpose today is to share my experience specifically for those impacted. That’s the person who is now blind as well as their family members or those they live with who will inevitably be effected by the mood swings, the difficulty concentrating and the almost narcoleptic like sleep attacks.

I’m here for those who are constantly falling asleep during family get togethers, trips to the movies or even worse intimate conversations.

Someone who loses their sight for whatever reason, chances are they’re dealing with reduced independence, , possibly loss of a job and often even friends and loved ones who may no longer come around.

Audio: “Sweet Dreams” The Eurhythmics

TR:

I looked forward to sleep in the early days of my vision loss.

My dreams gave me access. I could freely walk without a cane or guide, easily finding people and things without a need for assistance and even regaining the anonymity I no longer seemed to have in public spaces during my time awake.

Sleep wasn’t about escaping my reality, rather it was a way to help process all of the things running through my mind. Waking up after a full night’s sleep is what helped me eventually realize I didn’t lose as much as I thought I did.

I’m no scientist, but I’d bet there’s a relationship between good sleep, hope, possibility and optimism.

I had several opportunities to talk with others about their experience with Non24. Those who were either congenitally Blind or Blind from a young age often just assumed their experience was the norm.

Several people who grew up attending schools for the Blind shared the experience of being chastise by teachers for falling asleep in class.

Others recalled how some of their most productive time growing up was during the night when they should have been asleep. These are probably some of the same people who today as adults feel their productivity is increased because they make good use of their time awake in the middle of the night while others are asleep.

I’ll never forget a young lady’s story of working at a call center where she would sometimes uncontrollably fall asleep only to have her supervisor whack her on the hand with a ruler or some object. She desperately wanted to keep her job, but her sleep cycle was off more than it was on during any given month.

It’s more than sleep!

Audio: “The lion Sleeps tonight”, Ladysmith Black Mombasa & The Mint Julips

I know people in my circle at times felt I had a bad attitude and probably attributed that to just me now being Blind and angry.

Yes, I was moody! I wasn’t getting the rest that my body desperately needed.

Blind people have been dealing with this for lifetimes.

I dealt with it for about 8 years and reached a point where I just knew I couldn’t take it anymore. I was literally losing time. Meaning I’d fall asleep and have no idea I fell asleep.

I wonder about that stereotype of the angry Blind guy. He just may be the sleepy Blind guy!

I’m not making any excuses for moodiness or bad behavior. We all have to be responsible, but for those going through it, Non 24 or any significant consistent sleep deprivation for any reason can feel like you no longer have any control.

Audio: Comedy Central Promo for Dave Chappelle Show

TR:
One night, I wanted to watch the Dave Chappelle show on Comedy Central. It was about 10:25 and the show aired at 10:30.

I sat on the edge of the bed in front of the television in a very awkward position. I knew if I laid in the bed and tried to wait for it I’d fall asleep with less than 5 minutes before the start of the show.

Audio: The Dave Chappelle Intro Music

TR:

Finally it was 10:29 and the Comedy Central voice over announced the show was up next.

Yes!

With only about 20 seconds left before the start of the show I thought, I made it.

There was no way I’d fall asleep during the show because I knew I’d be thoroughly entertained. As I sat in this awkward position I decided to stretch my back and quickly laid back on the bed during what I figured was the final commercial before the start of the show.

Audio: The Dave Chappelle Show begins in normal speed and is sped up.

TR:

I fell asleep in probably less than 20 seconds and remained knocked out for a half hour.
– Applause
– Dave Chappelle Show Closing…

TR:

The next thing I knew, I heard the closing of the show.

– No, No, No! TReid….

Audio: The Dave Chappelle Show closing harmonica!

TR:

Eventually, I’d come to find this story funny.

At the time though it really hurt because I realized I truly had no control over my sleep.

If it was just about missing a television show that wouldn’t bother me much but I was noticing small gaps in my memory. I was struggling to create and focus. The mood swings were impacting my family.

Finally, in 2012 I joined the Sleep Study that lead to the release of a drug to help those with Non24.

This episode isn’t about promoting the drug to help those with Non24.

However, my business manager says we are open to endorsement deals and a name and number can be inserted for future episodes if interested.

The business manager can be reached at reidmymindradio@gmail.com.

You may wonder what exactly prompted me to talk about this now. I you caught the timeline, I began experiencing Non24 in 2004 and said it was 8 years later when I reached that rock bottom.

Some changes in insurance this year and some good old fashioned bureaucracy left me without a way to manage my body’s Arcadian Rhythm.

I found myself once again experiencing some of the same problems. Yes, a bit of moodiness, drifting to sleep and some real brain fog that makes concentrating a real chore. I’m still finding my way out of that fog. Once again, I’m dreaming.

Audio: “Dream”, Pharaoh Monch

TR:

Finally,, let me wish all of you a very Happy Independence Day.

I’m not really talking about celebrating the Fourth of July and the signing of the Declaration of Independence. I’m talking about those who have experienced severe vision loss at any time. Those who experienced an acquired disability.

Those who find that they now have to do things differently, no matter whether that means using a form of technology, a technique or personal assistance.

I’m speaking to those who may have been born Blind or disabled and continue to assert their independence or work towards gaining more.

or came to a realization that their individual independence was reduced and decided to do something to gain or regain as much as possible.

Independence is defined by the individual. I can’t tell someone what should make them an independent person.

Whatever it is, sleep deprivation can negatively impact any activity and therefore can reduce a person’s independence.

If you find yourself dealing with this, I guess I just want you to know you are not alone. I know I felt that way at 1, 2 or 3 AM sitting up while it felt as though the rest of the world was asleep.

I’m not telling you what to do. Some people find over the counter remedies like Melatonin help them. Others alter their lifestyle and say it works for them. I have what works for me and I just hope you too can find something to work for you.

Again, I’m not recommending anything, but I am open to having a conversation that would include my specific recommendation or at least me sharing the name of what works for me. At least this is what my business manager recommends.

If you deal with Non24 or some other sleep disorder and have a specific method that works for you I’d love to hear about it. Let me tell you how to contact me… but before that a brief reminder there’s only one way to make sure you don’t miss an episode…

**

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I would really love voice messages that I can share on the podcast. If you don’t want to call, you can grab your smart phone and record a voice memo and email the finished recording to ReidMyMindRadio@gmail.com.

I’d love to hear and share the voices of those who are listening. If you want to send a message but don’t want it shared just say so and it’s all good.

I appreciate you listening and if you liked what you heard please rate and even review the show via Apple Podcast. And please, tell a friend to listen. Spread the love, man!

You can always visit www.ReidMyMind.com, that’s R to the E I D like my last name!

Audio: Reid My Mind Radio Outro

Peace!

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Reid My Mind Radio – Who is Girl Gone Blind

Wednesday, November 30th, 2016

This episode features the latest Gatewave Radio piece answering the question; Who is the Girl Gone Blind?
Immediately following the piece, check out what happens when I run with a bit of inspiration from something I heard in my conversation with Maria Johnson, aka, A Girl gone Blind.

Picture of Maria Johnson

If you haven’t yet, make sure you Subscribe to RMM Radio bit.ly/RMMRadioSubscribe
– In the meantime, hit the Play button below!

 

Resources:

 

*Girl Gone Blind
*Girl Gone Blind on Twitter
*Leber’s Hereditary Optic Neuropathy

 

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”.

Reid My Mind Radio: Talking Misperceptions of Blindness

Wednesday, May 18th, 2016
Reid My Mind Radio Logo

Courtesy of RMM Graphic Designer, Raven Reid

While we’re over 30 episodes deep into RMM Radio, this is the first episode as an official podcast. That’s right, you can now subscribe to Reid My Mind Radio via the Apple Podcast app or any other podcast application.

 

In many ways it’s fitting that today’s episode feature’s Andre Watson, PhD. We’ll learn about his road to becoming a Psychologist an Olympian, a husband and Dad. Plus we’ll talk about the misperceptions of blindness and why yours truly when dealing with people, who make stupid assumptions about blindness, shouldn’t lose the desire to “take them down!”

* Reid My Mind Radio or any of its affiliates, do not hereby endorse random violence — at least not against innocent parties!* LOL!

I digress…but you should subscribe!

Or Listen now!

Reid My Mind Radio – True Champion

Saturday, April 11th, 2015

Reid My Mind Radio – Mr. Biggs – The Opera

Friday, April 3rd, 2015

This latest production for Gatewave Radio about Brandon Keith Biggs, an Opera singing blind student studying abroad in Italy is really more…

His story is really just about him living his life on his terms.

 

This also gave me a chance to take a different approach at telling his story.

 

Take a listen for more…

 

Then go ahead and check out Mr. Biggs for yourself.