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(00:00)
[Photograph of a small village in the desert, calm music playing, female voice speaks calmly]

I call Kay, my best friend I've never met.

(00:08)
[Female wearing glasses types on a laptop]

She's half way around the world and neither of us travler very often, but I talk her more than people I've know for years who live right down the street

(00:15)
[Same female in bed, typing next to a yorkshire terrier]

A year ago I started posting videos to YouTube discussing some of my experiences as a young, chronically ill person. I didn't think anyone would watch them, but Kay's mother sent me a message I couldn't ignore.

(00:26)
[Text appears on screen reading as follows]

"My 26 year-old daughter has EDS and has never met anyone else with it in person. She loves your videos and they mean a lot to her. I would love for her to be able to talk to you. Google me. I'm a legit person and a concerned mom. I'm afraid she feels hopeless right now and fear the worst.

(00:46)

I didn't have to Google her to know that Kay wasn't in a good place. I've been low before. My mother has been a concerned mother before. I think its all part of having a rare genetic condition that no one's ever heard of, and declining health. Some times you feel hopeless. A lot of the time, you feel like an alien. It's isolating.

(01:04)
[Timelapse footage of driving on a desert road. Imagery of ramshackled homes.]

Life is different with the condition Kay and I have. Expectations have to shift. Old dreams slowly fade.

(01:14)
[Female sleeping in bed]

A lot of the time is spent resting in bed, mourning what life should have been, or could have been. Sometimes I miss the naivety of thinking that life could just go back to normal, but I realize that it never really was anyway, and I just try to shrug it off.

(01:32)
[Female upright in bed drinking from a coffee mug and playing with her dog]

I called Kay on the phone that night and we talked for a couple of hours. Laughing, crying, relating. It was both comforting and frightening.

(01:42)
[Panning footage of a desert scene]

Kay is struggling with a lot of the same things I am having difficulty with, but she is also loosing her vision. While I knew that loss-of-vision was a complication of EDS, I'd never really thought about it before.

(01:55)
[Female playing with dog in bed]

I usually try not to think about all the hardships that I might have to deal with in the future. There's a seemingly never-ending list. It's daunting.

(02:05)
[Female walking in desert toward small shack, slow fade to black]

Kay made me confront vision loss as a possibility in my near future. I appear to have similar symptoms that she had when she first started experiencing vision loss.

(02:17)
[Old black-and-white footage of seamstresses and dancers]

I still worry a lot about whether or not there's a place for people like me in a world where we tend to value the ones, who work their way from the bottom to the top. We're told to push ourselves until we break. My body is already broken.

(02:33)
[Female standing near and walking around desert shack]

I want to be able to think that I could handle blindness, but the loss of vision would make things more difficult. I live in a visual world.

(02:43)
[Female sitting in bed, using a laptop]

I started watching more films while I was on bed-rest. Film was there when my life had to stop due to illness; a refuge; a silver lining.

(02:53)
[Female holding a Canon camera]

I struggle imagining a world where film would no longer be a visual experience.

(02:58)
[Female sitting in the desert, the breeze in her hair]

Someone somewhere once said that "It's easier to imagine the end of a world than the start of a new one", but I confide in knowing that another world already exists.

(03:08)
[Female in bed with terrier]

I will continue onward, like I always have.

(03:11)
[Footage from a pedestrian through a city]

I am one of the fortunate few with access to trial-medications, experimental treatments and mobility aids.

(03:17)
[Female on an electric mobility scooter, driving through a city on the sidewalk]

Kay is as well. While I struggle to think of this as a blessing, I know that we are amongst the fortunate few with the opportunity imagine another world.

(03:26)
[Female sits on mobility scooter in front of a large, black and white street mural featuring a large pair of wings]

A world where we do not have to prove ourselves in order to be valued.

(03:30)
[Female in bed playing with her dog]

A world where we will experience love and joy. A world where blindness is not approached with fear. A world where disabled people exist and live unapologetically

(03:43)
[Footage of a female walking on a dirt road in the desert that flashes to black]

A world where we belong.

(03:46)
[White on screen text with black background]

ANOTHER WORLD
Ehlers Danlos Syndrome (EDS)

A genetic condition that affects the connective tissues in the body.
Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs.

It is made up of cells, fibrous material, and protein called *collagen.*

*EDS is not rare,*
*just rarely diagnosed.*

(03:59)
[On screen text]

This film is dedicated to my friend Kay
and all of the disabled, chronically ill people
who are constantly battling, with everything.

(04:06)
[On screen text]

Director, Writer & Editor
Rachel Anne Bordignon

(04:10)
[On screen text]

Director of Photography & Editor
Sonia Hong

© Rachel Anne Bordignon 2017

(04:17)
[End of video]

EDIT: Spelling, grammar and transcription errors.

This is wonderful! Thank you!