Surprisingly, this has been the most embarrassing thing to post about despite the amazing creators on here who share their journey with similar diagnoses. I’m just so frustrated and disappointed in my body.

Vascular EDS can contribute to Neuro-ophthalmic and retinal vulnerability. Epilepsy is strongly linked to neuro-ophthalmic dysfunction and visual processing instability.

Regardless, it feels unfair. I wish I had this answer years ago. I wish I had that time to find myself again after knowing what may be coming — instead of hoping everyday that my vision is going to get better. Right now, these diagnoses are actually affecting me mildly compared to their full potential impact. Although I’m legally blind, I have much more vision than I could. I do things that I love still with the vision I have. This doesn’t automatically mean that I will become “fully blind” but it does mean that I might have to accommodate myself a little bit more in the future.

Everest has always been a diabetic alert and response dog but I don’t always mention that he’s a guide dog as well (mostly for night blindness and navigating busy areas— which is why you always see him at the airport). It used to not be so bad but now I’m really struggling with moving around especially at night. He walks with me up and down the stairs everyday so that I don’t trip when I lose my feet. I considered letting him have a vacation with my parents for a while, but he’s proved to really enjoy working and I don’t wanna take that away from him either — I also kind of need him a lot more these days for both of his jobs. Sometimes it just feels a little awkward to have a little vision, although being considered fully blind and saying, yeah, he’s helping me as a guide dog. I’ve had people say “well I can see you looking around.” Having to explain that most blind people have “some vision” is a little exhausting. I also can’t fake not being visually impaired as well anymore so here we are.

Thank you for sitting with me during this hurdle. I will get past it, I just needed a moment to process.

#LegallyBlind

#DisabilityAwareness

#InvisibleDisability

#VisionLossJourney

#RareDiseaseAwareness

VascularEDS EpilepsyAwareness

BlindButNotBlind ServiceDogLife

GuideDogTeam DisabledNotDefeated

LivingWithDisability