The Ever Changing Perspective of Essceejulies

Video: Its 2015

2015-02-27T12:44:00.000-05:00

The last time I posted on this blog it was 2014 and now it's well 2015. In the video below I give an update on what I've been doing and I also have a special little guest with me (towards the end).

I'm not sure how often I'll be able to post videos so you can keep up with me on Twitter and Instagram. So if you are on those networks don't be afraid to send me a tweet or say hi. I promise I don't bite.

Twitter: www.twitter.com/essceejulies
Instagram: https://instagram.com/essceejulies/

I also try to pop in on the Stargardt's support groups on Facebook. Just a heads up though I do not accept friend request on Facebook. You are free to connect with me on all of the other platforms I'm on or click on the contact tab here on the blog.

Previous blog post

Clinical Trials - Ocata Therapeutics : http://goo.gl/fb/Vf5ln3

Others with Stargardt's Playlist - http://goo.gl/4TxtMH

Featured TED Talks on My Blog - http://goo.gl/qVvZv4

Clinical Trials: Ocata Therapeutics (ACT) - Stem Cell Therapy

2014-11-10T07:30:00.000-05:00

Most rare diseases such as Stargardt's presently have no treatments available. So its very exciting that there are a few clinical trials taking place investigating potential treatments.

Last month (October 2014) in The Lancet, Ocata Therapeutics (Formerly Advanced Cell Technology) published their preliminary phase 1 clinical data for their Stem Cell therapy trials for Stargardt's Macular Dystrophy (SMD) and Age Related Macular Degeneration (AMD).

I decided to post about the Ocata preliminary data first. I will discuss the other two trials (Oxford BioMedica and Alkeus Pharmaceuticals) when that information is released.

In the video I discuss the safety findings of the stem cell therapy and the encouraging efficacy data. The links to The Lancet article and other items mentioned are below the video.

The Lancet Article: http://t.co/tZ9WItoDLg

What are stem cells? Blogpost: http://goo.gl/fb/DbHMHB

Wall Street Journal Video: http://on.wsj.com/1p9Zt91

Stargardt Trial: https://clinicaltrials.gov/ct2/show/N...

AMD Trial: https://clinicaltrials.gov/ct2/show/N...

Previous video: http://goo.gl/fb/frp18n

TED Talk Tuesday: Dr Robert Lanza - Cloning, Stem Cells & Regenerating Life

_______

Connect With Me -

Twitter: http://www.twitter.com/essceejulies

Youtube: http://www.youtube.comTheEssceejulies

#TEDTalkTuesday: What are stem cells? - Craig A. Kohn

2014-10-28T09:13:00.000-04:00

In my last post I talked about clinical trials, more specifically clinical trials that are currently being done in regards to Stargardt's.

My previous post - Video: Clinical Trials

One of the trials currently in progress involves using stem cell therapy for the treatment of Stargardt's and Age related Macular Degeneration. The company Ocata Therapeutics (which is conducting the trial) recently published preliminary phase 1 data in The Lancet. The data seems very encouraging and I'll be talking more about it in my next video.

Video: Clinical Trials

2014-09-30T13:32:00.000-04:00

Before I go into more detail about clinical trials involving Stargardt's I made the below video giving an overview of clinical trials.

Since Stargardt's is classified as a rare disease its quite profound that there are so many promising treatments in development. The three companies that will be featured in subsequent videos are:

Alkeus Pharmaceuticals
Oxford Biomedica
Ocata Therapeutics (Formerly Advanced Cell Technology)

For more information on clinical trials visit:

http://www.clinicaltrials.gov/ct2/about-studies/learn#WhatIs

Video: Hope for a Cure & Living Life

2014-09-23T12:31:00.000-04:00

"Just because the past didn't turn out like you wanted it to,

doesn't mean your future can't be better than you ever imagined.

Slowly losing my central vision to Stargardt's Disease is something you can imagine I'm not exactly thrilled about but its the reality I live in. I created this blog to document my experience and also to learn more about living with visual impairment.
Many sighted individuals and those of us new to vision loss are ignorant about the lives of the visually impaired. We often think about the things we will lose than about what we'll gain. This is something I struggle with. I've written about and met so many visual impaired people who despite what has happened to them have independent and fruitful lives. Yet in the back of my mind I still hope for a cure. Still hoping for a future where my vision is not such a limiting factor. With advancements in medicine maybe my future won't be that blurry.

A few weeks ago I came across a blog post by fellow Stargardt's blogger Chrissy Renee entitled Hope. In it she discussed how sometimes the over-fixation of hoping for a cure can distract us from the things we can still accomplish.

In the below video I discuss how I feel about balancing hoping for a cure and living one's life. I also wanted to make this video before I started talking about viable treatments being developed for Stargardt's.

Chrissy Renee's Blog: http://goo.gl/QNTMSF

Ron McCollum's TED Talk: http://goo.gl/qrI9Z6

Previous video: http://goo.gl/zLnxae

Others with Stargardt's Playlist - http://goo.gl/4TxtMH

Featured TED Talks on My Blog - http://goo.gl/qVvZv4

Connect With Me -

Youtube: http://www.youtube.com/TheEssceejulies

Twitter: http://www.twitter.com/essceejulies

Video: My Last 2 Videos

2014-08-26T12:35:00.001-04:00

2014 so far is a low productivity year for this blog. I've been venturing out on other territories on this grand social media sphere but rarely do I touch down on home base (this blog). I've started other projects some are winding down so I'll have a bit more time.

The two videos below are my latest uploads to my youtube channel Essceejulies. The channel is a companion to this blog so you can check it out here at this link: www.youtube.com/TheEssceejulies If I'm not posting here I'm most likely posting there. (Thursdays)

The first video directly below is an update. This summer has been very busy and I just catch everyone up to what's been going on.

The second video I talk about officially becoming a pedestrian. Back a few weeks ago it had been the first time in seven years I had been to the DMV (department of motor vehicles). The last time I was there my vision was better and I was taking a photo for my driver's license. Now I was going there to get proper identification. It was bittersweet but that's the reality I presently live in.

Connect with me:

Twitter: www.twitter.com/essceejulies

Youtube: www.youtube.com/TheEssceejulies

Google+: https://www.google.com/+SharinaJulien

Video: The Prospect of Bring a Mom

2014-07-25T10:40:00.001-04:00

I snapped a photo of my niece holding on to my fingers with her adorable little hand.

Its Friday so that means a new video post. Every Thursday a new video on my Essceejulies channel is published. Last week that wasn't the case because of several factors One of the reasons was two Mondays ago (July 14) I became a first-time aunt.

The birth of my niece inspired this week's video. When big life event's happen you often think about the context of your life. Having a form of progressive vision loss (Stargardt's) I often think about what my life will be like in the ambiguous future.

Turning Your Can'ts into Cans: Being a Visually Impaired Parent: http://goo.gl/36MrXd

Previous video: http://goo.gl/ycqlEM

Others with stargardt's Playlist - http://goo.gl/4TxtMH

Featured TED Talks on My Blog - http://goo.gl/qVvZv4

Connect With Me -
My Channel: http://www.youtube.com/TheEssceejulies
My Blog: http://www.essceejulies.blogspot.com
Twitter: http://www.twitter.com/essceejulies

Video - Being Aware of Other Senses | Essceejulies

2014-07-11T10:22:00.000-04:00

Thanks to advances in technology over recent decades and the growth of social media we are sharing more information than ever. Most of this information is visually based. This often creates circumstances where we're increasingly not in "touch" with our other senses.
In my latest video I talk about being aware of all our senses. One of the first things I thought about when I was initially told I was losing my vision was being more reliant on my other senses.

Also in this video I give a shoutout to another visually impaired Youtuber JD Dalton (his info is below). He has Albinism which is a congenial disease that causes a lack of pigmentation in the hair, skin and eyes. This causes those born with Albinism to be born with low vision or legally blind but unlike Stargardt's their vision stays stable. JD makes great videos on a variety of topics such as disability, LGBT issues, his creative interests and so much more.

JD Dalton's channel: http://www.youtube.com/PaatunghoyaJD

Previous video: http://youtu.be/ZihwXEI4-p4

Others with stargardt's Playlist - http://goo.gl/4TxtMH

Featured TED Talks on My Blog - http://goo.gl/qVvZv4

Connect With Me -
Twitter: http://www.twitter.com/essceejulies

Video - Reasons To Smile | Essceejulies

2014-07-08T15:11:00.001-04:00

In last week's video I talked about why I had reasons to smile over the past few weeks. This includes family milestones, visiting my eye doctor and finally meeting with my state's commission for the blind to help me to have
a bright future.

Previous video: http://youtu.be/9wBKWyvhcbc

Others with stargardt's Playlist - http://goo.gl/4TxtMH

Featured TED Talks on My Blog - http://goo.gl/qVvZv4

Connect With Me -
My Blog: http://www.essceejulies.blogspot.com
Twitter: http://www.twitter.com/essceejulies

No video this week & other things.

2014-06-27T10:44:00.001-04:00

I didn't post a video this week on my youtube channel. Its been a busy week with birthdays, graduations and meetings and I didn't feel it necessary to make a 30 second video just to say that.

One of the meetings I had this week was one it seems like I've been waiting a year to have. If you follow me on twitter (@Essceejulies) I posted the below vague tweet:

Things are starting to move forward. :)

— Sharina Julien (@eSsCeeJulies) June 26, 2014

Things are moving forward to helping me become more independent. I'll talk more about it in the following week's and months but I'm really excited!

Oh and also I wanted to remind you that if you're really into Google+ I created two Stargardt's groups over there. One is a public awareness group and the other is a private support group. I encourage you to join either group as a moderator or contributor.

Awareness Group:
https://plus.google.com/communities/106991972989952787499

Support Group:
https://plus.google.com/communities/100039691993030726093

My Latest Video: Reconciling Identity

2014-06-20T13:00:00.001-04:00

I finally solved my audio issues with my videos.... but now it takes longer to edit them. This week's video was some what "inspired" by my latest TED Talk Tuesday post about Inspiration Porn.
That TED Talk made me think about how I perceived myself before I was diagnosed with Stargardt's. There are certain privileges that you take for granted when You are abled-bodied but what do you do when you become limited?

Check out my video down below and answer this week's question in the comments below. Also subscribe to my channel so you don't miss out here:
www.youtube.com/TheEssceejulies

#TEDTalkTuesday: Inspiration Porn and the Objectification of Disability: Stella Young

2014-06-17T15:33:00.004-04:00

Its a Tuesday so it must be time for another TED Talk. Now, don't be alarmed (or excited) by the word 'porn" in the title of this post. This post is definitely not about sex.
Today's featured TED Talk has been circulating throughout the disability community for the past couple of weeks. In this TED Talk Stella Young discusses how the objectification of individuals with disabilities as inspirational devices is dehumanizing.

I first heard the phrase inspirational porn when I started to connect with more people within the disability community.
Inspiration Porn or Disability Porn is when disabled people are deemed exceptional for just existing. Yes, just existing, not for anything that is profoundly exceptional. Abled-bodied people using phrases such as "moving", "amazing" and "brave" to describe disabled people for doing mundane things such as taking walks or just simply being alive.

By calling people exceptional for doing simple things is like saying you don't expect anything more from them. Further excluding them from society.

Now the above criticism might sound a little harsh but I do have compassion for abled-bodied folks. When I started this blog it was a way for me to understand my new circumstance of being legally blind but I have to admit that I was still coming from the perspective of being an abled-bodied person. Still not yet self-identifying as disabled just dealing with this new identification.

I feel like in one of my early posts I committed an act of disability porn by featuring a blind toddler using her white cane to get around. Maybe I'm being a little harsh on myself... I wasn't trying to be objectifying. It was a way for me to deal with my potential future dealing with progressive vision loss. I saw this child who was being given independence which helped me to see a feasible future for myself.

That's why the term inspiration porn was initially confusing for me. Is it still inspiration porn if the person doing the objectifying is also disabled? I'm not trying to downplay the problematic nature of disability porn just wanted some feedback on this.

Rolling out My New Channel

2014-06-16T11:05:00.002-04:00

The roll out of my new youtube channel Essceejulies has been a little rough. A couple of my videos were having audio problems so I had to delete them and then repost them. I can tell you it is as frustrating as it sounds. I also have to admit that I am not the best self-promoter so things have been a bit slow. But
I feel like everything is now coming together. I've posted 5 videos including a trailer.

If you are a regular reader of my blog you'll notice that 2014 so far hasn't been my most productive year. A confluence of factors are the cause of the low productivity but the main one is youtube. Like I've stated in previous blog posts I've really started to like creating videos and saw that more and more people were using videos to tell their stories. There was a little hesitation on my part to openly talk about my visual impairment because I didn't want people to stereotype me as only that. I want to be known as someone who has a visual impairment not just as my visual impairment.

Most people think that Youtube is a place filled with cat videos but its also a tremendous social network. Where people not only present ideas or make entertaining video content but also build communities of like-minds. There are communities based on food, video games, fashion/beauty, lifestyles and the list goes on. So I thought the disability community has to be out there too. Actually more specifically those whose disability is caused by Stargardt's. Its been a little difficult finding others but I have. Most of them are not vloggers per se but have made videos talking about their experiences.

Here is a link to a playlist featuring them.

So I decided that I wanted to make a new channel where I talk about my experiences with Stargardt's and connect to other within the disability community.

The videos are posted on Thursdays and will be posted on this blog on Fridays. Here's the link to my channel so you don't miss out:
www.youtube.com/TheEssceejulies

Here are my latest four videos to catch you up to speed.

What I See: An Introduction

This is the introduction where I talk about my experience.

In this video I clarify some things and introduce you to two channels by others with Stargardt's; Stargardt Mommy and The Blind Spot.

In the below video I talk about living within my visual acuity. Since I'm in the somewhat early stages of Stargardt's my vision isn't so bad that I can't see at all but I do have some limitations. Living within these limitations is what I have to deal with.

This below video features a playlist of videos I initially made on my other channel (Essceejulies Vlogs) talking about my vision. Some of the videos in the playlist have been featured on this blog.

New Youtube Channel | Essceejulies

2014-05-27T12:44:00.004-04:00

Oh wow a blog post that isn't a TED Talk. Could this mean this blog will start being a blog again? One way I'm attempting to get back into the groove is by incorporating my interest in making videos.

On my personal youtube channel I tip-toed around talking about my disability. I made that account back in 2007 before I was diagnosed so its original intent was different. I made a few videos that I've posted on this blog but never really went in-depth. I felt it would be better to make a separate channel that would be a companion to this blog which would be a forum for people to talk about disability and connect.

In the video (below) I give a brief overview of being legally blind, Stargardt's and all the emotions surrounding my vision loss. You can subscribe here: www.youtube.com/TheEssceejulies. Videos will be posted on Thursdays.

UPDATE: There were some complaints about the audio in the previous video so I uploaded an edited version of that video.)

#TEDTalkTuesday Neil Harbisson: I Listen To Color

2014-05-13T13:37:00.001-04:00

Today's TED talk features how the stuff of science fiction is slowly becoming reality.

Technology over the past couple of decades has advanced so much that technologies that used to seem centuries away are quickly becoming within reach.

Neil Harbisson is a composer, musician, an activist and a cyborg. Yes, part man and machine. Neil has a condition called Achromatopsia where he doesn't see color instead everything he views is in grayscale. When he was 21 he collaborated with a computer scientist to develop technology for him to experience color.

The technology they developed allows Neil to listen to color. Different tones are assigned to various colors to experience color as a symphony of sounds.

Neil considers himself a cyborg because the antenna that allows him to hear color is connected to his brain. This is so much a part of his life that his passport photo shows him wearing his sensor. He even started the Cyborg Foundation which helps people become cyborgs.

It isn't that far-fetched to think that more people may be interested in having technology fused with their bodies. Bionic Eye which is an Australian company is developing a bionic eye for the visually impaired. This device is specifically targeted at helping those with Retinitis Pigmentosa and Age-Related Macular Degeneration. The device is implanted into the retina of the eye where visual information is transmitted via the optic nerve allowing individuals to better navigate their surroundings.

#TEDTalkTuesday - Sam Bems' Philosophy for a Happy Life

2014-04-15T15:28:00.000-04:00

Its been a few Tuesdays since a TED Talk post and today’s featured presentation is a great one to start with. I know that we’re almost a third of the way through 2014 but is it too late to say “Happy New Year!”?

The first time I heard about Sam Berns was actually in a previous TED Talk featuring NIH Director Dr. Francis Collins. Dr. Collins interviewed Sam about living with the extremely rare rapid aging disease Progeria. Back in October (2013) Sam was able to be a presenter at the TEDx Mid-Atlantic conference. In that talk Sam discussed his personal philosophy on happiness. Unfortunately earlier this year in January Sam passed away at the age of 17 due to complications of Progeria. In his brief 17 years of life Sam came up with a simple yet inspirational philosophy on how to find contentment.

Two-Year Stargardt's Anniversary and I'm Back

2014-04-02T19:43:00.000-04:00

Well hello, its been a while since I blogged. I took a break but I'm back. Today happens to be a special day for me, its been two years since I was diagnosed with Stargardt's. It really doesn't feel like its been two years. In the video below I talk a little more about it.

My Vision

2014-01-01T04:37:00.003-05:00

I just wanted to end 2013 talking about a topic that should of been one of my first vlog post and that's my visual impairment. If you are a regular reader of my blog this isn't news but I haven't discussed it much on my youtube channel. I've learned a lot over the past 20 months since being diagnosed with Stargardt's Disease.

Others With Stargardt's Playlist:

http://www.youtube.com/playlist?list=PL9t3Sm6-GgyXz5tGwybn6bEAEH2ir3WQx

What I See Playlist:

http://www.youtube.com/playlist?list=PL9t3Sm6-GgyWA7feo9l82Vby_o-DkNhkn

Watch Previous Video here: http://youtu.be/jWdL_sXg3fs

#TEDTalkTuesday Chris Downey: Design with the blind in mind

2013-12-03T14:49:00.002-05:00

Haven't done a TED Talk Tuesday in a while but I'm back with a good one. Today (December 3rd) is International Day of Persons with Disabilities. This year's theme is "Break Barriers, Open Doors: for an inclusive society and development for all”. I found this great talk that I feel embodies this year's theme perfectly.

Chris Downey is an architect who back in 2008 underwent brain surgery to remove a tumor. Even though the surgery was successful it caused him to become blind. After going through rehabilitation to reorientate himself to his new circumstances he started to compare and contrast life before and after vision loss.

Being an architect Mr. Downey was very concerned with how things looked but after his vision loss he had to use his other senses in his design approach. He didn't let vision loss stop him but as a guide to inspire him for more inclusive design. Mr. Downey's TED talk focuses on inclusive design when it comes to city-planning.

The following is a quote from Chris Downey:

"So my final takeaway for you is that not only is the city good for the blind, but the city needs us. And I'm so sure of that that I want to propose to you today that the blind be taken as the prototypical city dwellers when imagining new and wonderful cities, and not the people that are thought about after the mold has already been cast. It's too late then. So if you design a city with the blind in mind, you'll have a rich, walkable network of sidewalks with a dense array of options and choices all available at the street level. If you design a city with the blind in mind, sidewalks will be predictable and will be generous. The space between buildings will be well-balanced between people and cars."

Just In Time For the Holidays: Braille Greeting Cards

2013-11-26T09:02:00.000-05:00

The above picture is an assortment of Braille Tactile Holiday Greeting cards.

So the other day one of my Stargardt's twitter friends Yvonne Felix tweeted me the above picture of greeting cards. These are not just any greeting cards they are Braille tactile cards. Yvonne was tired of getting cards that she couldn't see so since she's an artist she decided to make her own. This is such a great idea. The proceeds from the cards will go to support the non-profit Resight Inclusive Arts.

The cards are $3.00 or $25.00 for 40 cards you can purchase the cards here.

If you liked this post you maybe interested in reading:
Artist Yvonne Felix Thriving With Stargardt's

Saying Hi and Stargardts Links

2013-11-24T09:02:00.000-05:00

I'm saying hello via the below video I made but I just realized that some countries don't allow video playback. Basically what I'm saying is I know that on this blog I can be inconsistent when I post and I've drifted away from telling my story dealing with vision loss. Below the video I provided links to websites, blogs, a video playlist and more to help you connect with others who have Stargardt's. If you know of some information I missed feel free to contact me. If you are able to watch my video I made it closed captioned so you can understand me better.

Websites
Stargardt.Net is a tremendous resource for those with the condition. - http://www.stargardts.net/

Stargardt Press - Is a mostly Spanish language site updating information on Stargardt's and other eye diseases. - http://medicablogs.diariomedico.com/stargardtpress/

Social Networks
Twitter
Use or search for the hashtags #stargardts #stargardt or #StargardtDiease to connect with others on the site.

Facebook
Groups
Do a search on these groups. I would suggest to first request to join the 'Closed' groups since they are private and won't show up on your Facebook profile page.

Stargardt Disease - Macular Degeneration Support Group (Closed/Private)

Stargardt's Awareness Group (Open/Public)

STARGARDT'S CENTRAL (Closed/Private)

Stargardt's Disease Forum (Closed/Private)

The Art of Going Blind w/ Stargardt's - support group (Closed/Private)

Google+ (Plus) Communities
Stargardt's Disease Awareness: This is a public group anyone is welcome to join.
- https://plus.google.com/communities/106991972989952787499

Stargardt Disease Support - This a private group for those who have the disease to connect with others -
https://plus.google.com/communities/100039691993030726093

Stargardt Bloggers

My Blind Side is written by Tanna who writes about life with Stargardt's - http://myblindsideblog.blogspot.com/

See Through My Eyes is written by Chrissy Renee who is an Australian blogger living with the condition - http://www.stargardtsdisease.blogspot.com/

Living With Stargardt's Disease - Is written by Bhumika who lives in India - http://stargardtsdiseasesupport.blogspot.com/

Living With & Supporting Stargardt's Disease - Is written by Kayley Rose who doesn't let Stargardt's slow her down in the UK - http://stargardt.wordpress.com/

Living with Stargardt's - Is written by Jen who has had Stargardt's for 20 years - http://living-with-stargardts.blogspot.com/

Vivencias de Ana Mirada Stargardt - This is a Spanish language based blog written by Liz who lives in Mexico - http://miradastaragatdy.blogspot.mx/

Are You Looking At Me? - Living With A Visual Impairment - Is written by Heather who writes about being a mom with Stargardts - http://hgarbitt.blogspot.com/

The Checkered Eye Project: Blog - Is written by Libby who is working on making the lives of the visually impaired better - http://www.checkeredeye.com/blog/

Diamond Panes - Is written by South African writer Leanne who writes so eloquently about life - http://www.diamondpanes.blogspot.com/

Creative Insight - Is the blog of visually impaired Artist Michael Williams - http://crativeinsight.blogspot.com/

Helping Lexi - Is a blog by Madi who is a mom with Stargardt's. Her blog is about her son's journey dealing with many different issues. - http://helpinglexi.blogspot.com/

Maono Ya Chini - Is a blog written by Fatmatta who is a college student who has Stargardt's. One of her goals is to one day develop technologies that will help the visually impaired. - http://maonoyachini.com/

Maurie Hill is an employee of Al Squared which is a company that makes computer software for the visually impaired. Maurie has Stargardt's and is a contributor to the company's Zoomed In blog. - http://www.aisquared.com/blog/tag/maurie-hill/

Blind Girls See - This blog is written by Nysha Charlene who recently started a blog chronically her journey with Stargardt's. Saying " we can all continue marching onward, seeking with our souls and seeing with our hearts." - http://www.blindgirlssee.com/

Through The Glass, Dimly - Information about Stargardt's Disease from a guy living with it. Who has been chronicaling his stargardt's journey since 2010.

Video Playlist: Others With Stargardt's Disease
I made a video playlist of people talking about living with Stargardt's Disease. The playlist can be found at the following link:
https://www.youtube.com/playlist?list=PLlvAOpdEfRvMPCj3lTanYJGXLAPpRpl-W

#TEDTalkTuesday - Vampires: Folklore, fantasy and fact - Michael Molina

2013-10-29T16:48:00.001-04:00

I'm switching it up a bit with my TED Talk Tuesday post and featuring a video from the education branch of the TED organization. This year I've been more enthusiastic about celebrating Halloween since last year being unable to due so because of Hurricane Sandy.
I wanted to share this interesting video with you about vampires and folklore. I'm a bit of a history and anthropology geek so videos like the below are quite fascinating. The clip is an entertaining animated look at how the folklore of vampires is more than just Dracula but is a global phenomenon. Its cool how people all around the world who didn't have any interactions with one another all came to a similar conclusion.

Earlier this month on my Youtube channel I attempted to make a video about mythology and folklore but I feel the below video did a better job presenting that idea. I'll save you a few minutes by not posting that video here.

Its interesting the topic is about vampires because I can point out a few similarities between vampires and someone who has Stargardt's. You're probably like what? I'll explain:

Vampires often have to shield themselves from the light. People who have Stargardt's shield ourselves from bright lights because of photophobia or light sensitivity.
Vampires are often portrayed as having red eyes. Some Stargardt's/Low Vision patients might benefit from wearing red contact lenses. (Achromatopsia Info)

I'm not exactly sure how I feel about wearing red contact lenses all year long. It would be different but I definitely would have to investigate further.
This video has given me the idea that I should possibly be a vampire this halloween, I'm still undecided. I got the photophobia down-packed. Just need some fangs and makeup and I'm good to go. *smiles*

TEDTalkTuesday - Julian Baggini: Being Multifokal

2013-10-15T10:20:00.002-04:00

Finally back with a new TED Talk. The title of this blog is The Ever Changing Perspective of Essceejulies. The word in that title that jumps out should be perspective. The use of the word perspective isn't just used to describe the physical sense of sight but how perspective shapes how we see with our inner-vision. Perspective molds so much of how we navigate through life. It shapes who we think we are and how we interact with others.

The below video is a talk from the TEDxKingsCollegeLondon conference featuring writer, journalist and philosopher Julian Baggini. Mr. Baggini has written several books about perception and personal identity. In his TED Talk he discusses the importance of "seeing" the world and one's self through a multifocal lens. Too often when we narrowly perceive ourselves or others in a singular way we greatly limit our experiences.

When I was told I was losing my vision it really made me question my personal identity. It changed my perspective on who I thought I was and what I could do. I had and still have to a certain extent a fear that I'm just going to be known as someone with a visual impairment. I can not define myself in that narrow narrative.

"When we come to see ourselves in terms of just one thing. For example, I'm a writer or I'm a mother or whatever it might be. You're very vulnerable. If something happens in your life which challenges that identity and your left without the sense of identity. Its very important to recognize the plurality of who you really are... for resilience" - Julian Baggini: from the TED Talk Being Multifokal"

Over the past year I have gotten the opportunity to know many amazing people who also happen to have disabilities. They haven't allowed society's myopic views or themselves limit what they can do. That's why this blog is called The Ever Changing Perspective of Essceejulies because we should never allow ourselves to be narrowly defined.

#TEDTalkTuesday Roundup Video Playlist

2013-10-01T15:03:00.001-04:00

Its Tuesday so its time for a TED Talk but I'm not featuring one talk but instead a playlist. The TED talk posts have been the life-preservers for this blog. I've criticized myself in the past for letting the posts become the only content I would feature for a while on the blog but they aren't a complete waste.

The talks that I've featured so far are all fascinating and have provided me with great insight into are world. The below playlist features the eight talks I've blogged about. The talks on average are 10 to 20 minutes long so I truncated the videos down to under five minutes each. This will allow you to get a general idea of what was being discussed in each presentation. I also encourage you to watch the full videos if you can.

The following are links to each of my TED Talk Tuesday posts:

Francis Collins - http://goo.gl/NcCtHJ

Susan Cain - http://goo.gl/YBptgi

Oliver Sacks - http://goo.gl/906FXs

Lissa Rankin - http://goo.gl/lbZNQV

Ron McCallum - http://goo.gl/Mu7ztu

Robert Lanza - http://goo.gl/T221CR

Chen Lizra - http://goo.gl/RZ3Egt

Brene Brown - http://goo.gl/zjqXSG

My VEDA Experience #SSSVEDA

2013-09-25T15:39:00.001-04:00

Last month I participated in VEDA or Vlog Everyday In August. A vlog is a portmanteau of the words "video" and "blog". I flirted with the idea of vlogging or making videos on Youtube since 2007 (before I was diagnosed with Stargardt's). I've always enjoyed the creative content the site has to offer. Yes, its more than cat videos! Its also been amazing to see so many of the creators develop their brands and others sharing their lives over the years.

Last year when I was diagnosed with Stargardt's I didn't really know what my vision would be like a year from that date. Would my vision be stable or worse? It was like being in a visual limbo, feeling stuck. I can not sit back anymore and wonder what will happen, I have to live within my capabilities. If my vision allows me to film and edit videos then I'm not going to hold myself back.

I participated in the Savvy Sexy Social VEDA or the #SSSVEDA which was hosted by social media marketing consultant Amy Schmittauer. We had a topics calendar that helped guide us in making content for our videos. In an effort to keep up with the calendar I really didn't get to properly explain what life has been life dealing with vision loss. If you were to watch my videos you really can't tell that I have a visual impairment. That is partially why I wanted to make videos because automatically most people assume that everyone who is visually impaired is totally blind.

I didn't post the videos here because I was embarrassed. It was really the first time where I had to sit back and look at myself. I'll admit that it was weird but I feel like its something everyone should do. Its a great way to build self-confidence. Since I'm a newbie at filming and editing, the videos aren't the best but I had fun. I often film my vlogs outside while I take walks holding my point and shoot camera in my hand. The lens is pointed toward me as I talk to it. This may look weird but I realized that because of my visual impairment I'll potentially have more experiences of "looking" weird.

I also needed the creative challenge to break me out of a writer's block with this blog. I was developing a high level of anxiety about writing because I wanted my posts to be "perfect". Being perfect is something I've discussed before in a previous post The Perils of the Peculiar Pursuit of Perfection. Participating in VEDA reminded me that practice makes perfect and that writing is a skill first then an art. Not everything you create will be amazing but the more effort you put into it you'll eventually get there.

Below is one of my videos:

Check out my youtube channel here:
http://www.youtube.com/scjulien

My #SSSVEDA Video playlist click here

If you liked this post then check out:
Kim Nguyen: Varying Degrees of Visual Impairment