A friend of mine, also suffering from sight loss, wrote something very similar about our common rare degenerative retinal disease that stuck with me: "Rarity is something that strikes suddenly and makes everyone else look like an alien!" I always felt that this perfectly describes the sense of disconnection that comes with experiencing the world in a completely different way than everyone else.
Thank you for this, so powerful presentation. Personally, I have never been a person who likes to express my feelings, specially with people that are not very close to me. Probably, feeling discriminated or underestimated can be things that I do not let others to know. Thank you again for so amazing job you are doing.
As someone who spent their entire life in a constant state of change, traveling from country to country culture to culture, adjusting to problem-solving issues and surviving the changes that are going on due to my blindness, I do not fear. What is harder to deal with is my family and friends and their acceptance of the new reality. It’s difficult for them to see who I was and I was to see who I am and have to realize that a lot of what is still inside of me is still there, but there’s physical limitations that have changed who I am and now they are going to have to adjust to that and in some cases the friendships won’t last because I can’t adjust. That’s the reality of this and it’s hard to deal with but I’m coping.
Fear …fear of the unknown …fear of things I know will happen. It paralyzes my decisions …. Knowing my sight is diminishing, worrying about other health problems …. Never ending cycle of anxiety
I have Stargardt's. Fear of not being good enough. Overcompensating to make up for what I can't do. I worry that people ate nice yo me because they pity me . Thank you.
A friend of mine, also suffering from sight loss, wrote something very similar about our common rare degenerative retinal disease that stuck with me:
"Rarity is something that strikes suddenly and makes everyone else look like an alien!"
I always felt that this perfectly describes the sense of disconnection that comes with experiencing the world in a completely different way than everyone else.
Thank you for this, so powerful presentation. Personally, I have never been a person who likes to express my feelings, specially with people that are not very close to me. Probably, feeling discriminated or underestimated can be things that I do not let others to know. Thank you again for so amazing job you are doing.
As someone who spent their entire life in a constant state of change, traveling from country to country culture to culture, adjusting to problem-solving issues and surviving the changes that are going on due to my blindness, I do not fear.
What is harder to deal with is my family and friends and their acceptance of the new reality. It’s difficult for them to see who I was and I was to see who I am and have to realize that a lot of what is still inside of me is still there, but there’s physical limitations that have changed who I am and now they are going to have to adjust to that and in some cases the friendships won’t last because I can’t adjust. That’s the reality of this and it’s hard to deal with but I’m coping.
Fear …fear of the unknown …fear of things I know will happen. It paralyzes my decisions …. Knowing my sight is diminishing, worrying about other health problems …. Never ending cycle of anxiety
I have Stargardt's. Fear of not being good enough. Overcompensating to make up for what I can't do. I worry that people ate nice yo me because they pity me .
Thank you.