Comments from Readers
about the Network Publications
From a man in his 40's: "I always used to wonder if I was the only one in the world who had this eye condition. So it was a very healing experience for me to find out, through the network, that there are others who have it and that it is a recognized eye condition. I really appreciate the reassuring process that has been so evident in the network publications."
From a woman in her 40's: "The Achromatopsia Network Journal has been a means of communication such as I've never had before. None of my doctors ever told me about anyone else who had achromatopsia. Now I don't feel so 'different.'"
From a man in his 20's: "Reading the network publications has reminded me of what a gift it is to be part of this fellowship. The network is an invaluable service. From speaking with my own parents, I know that they also desired this sort of support during my younger years. Thank you for 'bridging' us all."
"Thanks for the network and for the network books and the Journal. When the Journal comes in the mail, I make the world stop and leave me alone until I have read it at least twice. My mother enjoys it too. She would so have loved to have had helpful information like this when I was growing up and she and my dad were so alone with this 'strangely sighted' child who couldn't understand colors and who loved the dark."
"I've learned so much about myself in the last year and a half since I've been a member of the network, and a lot of it has happened because of what has been shared through the network books and the Journal. It's like discovering civilization after having been stranded on a desert island all my life. I want to write about these 'inner workings' I've discovered, and I know that there's no audience who can really understand the things I want to say like the one that reads the network Journal."
From a woman in her 30's: "Thanks so much for the way the network publications have unified us and let us know that we're all in this together. I love the words of camaraderie and commiseration which are made possible."
"I have just discovered the website for the Achromatopsia Network as a result of having read The Island of the Colorblind. Suddenly the world is a more comfortable place. I am 51 years old and have never communicated with anyone else who experiences the world as I do. I am hungry for that kind of communication."
From a man who lives in Italy: "I think that, for many of us achromats, having the chance to share what we feel with others who can understand is a basic, vital need. I recently visited my parents; and, since they do not understand English, I read from the network publicatons aloud to them, translating the words into Italian (this has included, of course, some comments I myself had contributed). I hadn't planned to do that; and yet I found that, in doing so, it was probably the first time in my life that I managed to communicate certain significant things to them. I feel that doing this made an important difference for all three of us and that it will continue to do so."
"Reading through the network publications has been extremely emotional for me. To read some of the comments from other networkers has been like reading my own diary. Even my mother feels as if she is reading her own life story. Over the last 21 years I have gone to numerous specialists, and my family has spent a fortune on these visits, yet it wasn't until we found Oliver Sacks' book (The Island of the Colorblind), which then led us to find the Achromatopsia Network, that we were finally able to learn much about my eye condition. It is such a relief and a comfort to know that there is a term for what I have and to learn that I am not alone. I feel now that finally I might be able to come to terms with this condition. Also I have hope that now I might actually get somewhere with the specialists. Now that all this is written down in black and white, they might take me seriously. I am thankful to everyone who has contributed the comments and experiences shared in these publications."
From a network dad: "I cannot adequately express how invaluable (and sometimes moving) the experiences related in the network publications have been to our family. It is amazing how certain types of seemingly inexplicable behavior that our daughter has exhibited can be explained simply by understanding how she experiences the ambient lighting conditions because of her vision. The network materials have been enormously rewarding and have affected how my wife and I relate to her. The sum of the experience and information presented in these publications is absolutely amazing."
From a man in his 20's: "I am incredibly happy today, because I received the parcel of network publications. It was a strange feeling for me, reading about people who have so much in common with me and who are coping with the same kinds of difficulties I encounter -- even though I had the advantage of growing up with a sister who has the same vision disorder. I had thought she and I were alone among the other people of the world. To follow a metaphor that was used by Oliver Sacks, it was as if we were on a little island in the middle of the ocean. Now I find that the island has become a bit more inhabited."
From a new member: "I received all the books and other materials you sent last Saturday and immediately cancelled all other plans for the afternoon. I read for 5 hours! In anticipation of reading all this material, I envisioned this experience as being like the scene from the movie, The Dark Crystal, in which two people meet, touch hands, and are locked in an exchange of memories of their youth. They had a name for it. This experience has been all of that and more. To be honest, it was really too much to absorb at one time. For days my attention has been diverted, thinking of all the things I have read that I would like to respond to. I was especially touched when reading about a dad who had observed his daughter's sheer enjoyment and freedom while playing outdoors at night. I remember that freedom. It was almost as if the weight of the world took a vacation. I also remember standing in the center of town in the evening, reading all the store signs up and down the streets and peering into the store windows. This was the place where, at high noon, I could barely see anything on the other side of the street. I grew up in the 50's and 60's. My father's understanding of my vision disorder was so clouded by what he was told -- as well as what he was not told -- by the medical professionals. I believe that, if he had been helped to really understand my condition, he would have felt toward it the way some of the dads in the network who have been quoted seem to feel, instead of feeling despair. I believe that one of the most important things that any of us need in this world is validation. The network materials have given me a validation I never knew I could have. The day I found out that this network existed, it was as if the world stopped for at least half an hour."