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for the Blind

Expanding possibilities for people with vision loss

So Excited to be Here!

Oh Goodness! I am so excited to be here. I've been craving something like this for so long but just didn't know how to find it. I've been wanting to 'hang out and chat with my kind' for a while where I can just be myself without having to be 'normal' or explain how everything works (or doesn't work) with me. I have retinitis pigmentosa. It's been slowly progressing over the years but it seems like it's been getting really bad within the last five years.
But anyway, I'm just glad I found this site and that I can chat with others like me, learn from you, give and receive support and encouragement. So excited! :o)


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Re: So Excited to be Here!



Hi Jana,

Thank you for taking the time to describe parts of your story. I think you'll find you're in very similar company here.

You may enjoy reading "Personal Stories of Living With Vision Loss": http://www.visionaware.org/info/get-connected/pers...

Glad you're here.

Shannon Carollo


Re: So Excited to be Here!



Hi everyone!
I am also new here and I am not a native speaker, so please forgive my grammar mistakes.
I am 42, married, a mother of a 5 year old and living in Mexico. I started losing my sight 6 years ago and have to use the white cane and everthing else that goes with my condition. The process was horrifying for me and all my friends with sight issues say the depression was the first step, and I took it, too. I was horiffied by thoughts of completely lossing my sight, wondering what kind of a life I would have, and what kind of a mother and wife I could be. Until I met an instructer that pulled me out from that deep black hole of desperation.
I figured out some tricks for everyday life, I learned how to do some housekeeping thing differently, but most of all, I changed my attitude, from "oh my God, I cant do this anymore!" to"hmmm, how could I do this?" Even though I barely started learning how to do things differently, I feel I alrady made some important steps, such as I am motivated to learn how to do things, I don?t have a problem asking for help, I am not afraid of having accidents doing things and I don?t feel less than sighted people. I came to the conclusion that it is requiered more from us with this condition to acomplish goals, so we are definitely not less. I admire all of us to wake up everyday and give so much extra to make it through the day.
Sending you greeting from Mexico.


Re: So Excited to be Here!



Well Pooey! I know I wrote a response to Mike's last post but I sure can't find it now. I swear I saw it before I signed out. I'll have to write it again. I'll catch up to y'all later in the week. Tam


Re: So Excited to be Here!



Hey guys. taking a break from work because I want to answer this while it's fresh in my head. I will, as always answer honestly, and hope for nonjudgement. I say this because about 5-6 years ago, I struck what I thought was a friendship with a person on here, to the point where we exchanged personal emails, and we had really great conversations. Then this person who shall remain nameless out of respect, asked me to stop contacting them because they found out I'm a moderate drinker. That is to say, I love trying new wines and craft beers. Somehow, that makes me inherently evil I guess. Jesus, drank, and made wine, so I'm feeling OK with myself. It did effect me for a while though, I stayed away from this site for a long time because of it. It's amusing to me that some of the self-proclaimed most God fearing people can levy some of the harshest judgements on other people; the very thing God/Jesus asks us not to do. So I'll also throw in here, that I curse frequently, and enjoy pretty much any physical pleasure you can think of if anyone who reads this would like to judge me fully. LOL (though I do keep it light on this site because there are kids who join).
A couple years ago for Lent, I decided rather than giving something up, I'd try to improve something i don't do as well as I want to. In the middle of the Our Father, the line "forgive us our tresspasses, as we forgive those who tresspass against us" is where I decided to focus. That is a hell of a lot harder to do than I originally thought because when you really break it down, you're directly asking God to judge you, the same way you judge others; Pretty heavy stuff. Needless to say, I'm still working on that and will for the rest of my life I guess. No one will ever confuse me with a quire boy, but I like to think I live and let live, I respect others according to how they treat others, and I will be cheritable if I have the means when the opportunity presents itself. OK, clammering down from my soapbox now.
Had to put that out there, because Tammie wants to know what we do when we go out. We travel to wine tastings, restaurants, a craft pub here in the neighborhood;
we go to friends' houses, her work dinners, the movies, water parks, theme parks (though she doesn't like the roller-coasters as much as my son and I, especially the rides that go in circles.
We have a Golden Retriever (not a guide dog) that we like to take to parks though she likes people more than other dogs.
We've been hiking in NH, swam in a lake, the ocean, we work out together sometimes; pretty much anything that sounds like fun. even if it's just a trip to the grocery store and I'm being stupid trying to long-snap a loaf of bread or some frozen vegies into the cart from 10 feet away, or just at home watching movies or the investigations Discovery channel; and occasionally the impromptu wrestling match will break out.
We go to mass and attend church activities each week, and we're working on volunteering for the Catholic Outreach program starting in the next couple of weeks.
She goes to my weightlifting competitions and we tell them she's my coach so she can get the discounted entry fee, LOL. But she most definitely does more for me at those meets than most coaches do for their athletes. She keeps me sane, gives me support, runs me back and forth to the men's room (we drink lots of water at these meets) helps me warm up before it's my turn to go on the platform, endures my bitching when I don't lift as well as I'd like to... she's the amazing one... not me.
I believe you can have fun anywhere.
Last summer we took my son out to Ohio and went to Cedar Point, Rock&Roll Hall of fame, NFL Hall of Fame, and the Christmas Story house. I actually fit my big butt under the sink where the little kid hid in the movie so they could take a picture. Then we drove from there to MI and went to the Ford museum and met a friend of mine from work. (my lady is also from MI so it was nice she could get back there)
I will ask her anything you want to know, and if she doesn't want to join this forum, I will ask her to write down her response so I can post it for you.
Any of this line of thought can be applied to friends as well. My buddies and I have done all the things that regular buddies do. I remember in 2004, one of my lifting friends found out I had never been to a "gentlemen's" club when we were lifting at a meet in Ohio. Next thing i knew, I found myself and my buddies at the local establishment. It sort of backfired on them though, because let me tell you, when a blind man goes to a Gents club, his friends are for all intents and purposes, invisible to the dancers.
But we've been to hockey games, rock concerts, I watched my friends play slots and table games (i'm not a fan of gambling for myself) been to football games; even my girl loves football, so we went with my son to a Notre Dame game up in Philly last year.
Anything is game if you like it, and if you have good people to share it with, all the better.
take care y'all.
Mike


Re: So Excited to be Here!



Good Evening!
DeMarco said he wanted a really long story so here goes . . .
Mike, you are so amazing. I’m in awe every time I learn something new about you. Very inspirational, indeed. God always puts us where we are meant to be and your story definitely demonstrates that.
Yes, I agree with you that children are so resilient. They have an incredible ability to shrug things off and make it work another way, especially the younger they are. They don’t get stuck inside the box like we do when we get older. It brought to mind my own experience with my hearing. I don’t remember getting hearing aids when I was three but I remember getting new ones when I was about seven or eight. Of course, they were new and improved at that time. I remember hearing all kinds of weird noises. I’d ask my parents, “What’s that noise?” It was always some little noise like the water dripping in the sink. Things I’d never heard before but everyone else does and takes for granted. However, I was an adult when I had to switch from analog to digital ‘ears’ (that’s what I call my hearing aids, LOL! On workdays, everyone knows I don’t put my ears on until I’m ready to walk out the door so don’t bother talking to me. HAHA!). Making that switch was the hardest thing I’ve ever done. It took several months and I so desperately wanted to give up and stay with the analog. I hated them! But I had to switch because all the research and technology gains are made with the digital. I eventually got used to them but then I had to go through the whole process again when I had to get new ones. But I have to tell you a little secret. If they came to me and said they have a miracle surgery that will give you all your hearing back., I wouldn’t do it. I absolutely love my peace and quiet. If I’m home for the weekend by myself, I don’t put my ears on at all. It’s great!
Mike, it’s awesome you did all those things with riding the motorized toys/vehicles. I can’t even imagine. You’re a lot braver than I am. I still have some sight left and I can’t imagine doing that stuff. Insane! But I guess that’s where I need to get a little braver . . . Thought to ponder. I need to stop focusing on what I can’t do and start focusing on what I can do.
Mike, if you don’t mind me asking, what do you and your lady do when you go out? I’m just curious as I seem to find it intimidating to go out and do things with my friends and family.
DeMarco, I kind of get the impression that you still have some sight left? Do you use a white cane? Do you use public transportation?
I’ve run out of time but I have more I want to say/ask for the both of you (and for the lovely lady, if she is willing to give me her opinion as well) regarding the topic of public transportation.
Again, thank you both so much for everything. I really appreciate it!


Re: So Excited to be Here!



Man, those are some awesome stories!!!!

You guys inspire me!!!! Thank you for sharing because I know how hard it is to tell your story! I hope to hear more and looking forward in reading them.

Just so you guys are aware, I don't think its too long, they are actually not ling enough!!!! lol

Take care

DeMarco

Low Vision Guy


Re: So Excited to be Here!



good morning all
Like Tammie, I'd also like to thank Demarco for the threads he shared recently. It's really good to see some revitalization within these boards. I've been a member since 2010, and there have been some barren times. I also like to see that folks are living life more fully; I've been blessed to the heavens, I know that; .but you also don't get hand-outs in this world for the most part. I think some of the recent posts I've seen are demonstrating more and more people realizing they don't jus have to sit at home, and I love that.
Tammie to answer your question, I remember everything; probably gives me a leg up over some. I tell people that if there is such a thing as a perfect age to go blind, it's probably 6 or 7. I was old enough to where my cognative abilities were kicking inbut young enough that A. I could grow and adapt with my blindness so it was more a way of life, than a change in life. and B. I was not old enough to play high school or even college football (football was my first love) or C. drive, or experience many of the other offerrings in life enhanced by vision where the loss of which would create bitterness. I probably should say here though, that thanks to my dad, one of my sisters boyfriends, and the mother of a woman I use to be with who are all just as crazy as me, I've driven motorcycles, tractors, car/jeep, and a snowmobile.
I remember colors, the faces of my family, playing football as a youth, i remember the moon seeming to follow the car as we drove down the highway late at night... Probably the only thing I don't remember as well as I'd like are stars. I guess my vision was bad enough by then due to the growing tumors that I just couldn't see them well enough to log memories.
Losing my sight created sort of a natural border in time for me, pre-sight, and post-sight; I truly believe this split enabled my memories to begin much earlier than most. I honestly can recall day to day events from my 3rd birthday onward.
Tammie I think your story demonstrates a lot of courage, especially with the develoment of the RP. I'm not going to insult you by pretending to know what you're going through, but I will say this.
The city offers much independence to VI people. I grew up on a large farm in the middle of no where. I needed to be taken everywhere. I went to the University of Pittsburgh upon graduating high school, and once I got a taste of the city, I never went back home accept to visit. I moved from Pittsburgh, PA to a town in Delaware because someone told me DE also has good public transportation and I was dumb enough not to validate that claim... they don't, and it sucks. Especially after my divorce, trying to be a single father in a town with no real busing to speak of was a challenge. With good friends, an amicable relationship with my ex, and a good imagination though, we figured it out. My son is now 15 and a hell of a good kid. I think a lot of it is because of what he and I overcame together. I'm sure God played a hand in it, too, because if I hadn't come to DE, I wouldn't have transferred to Bank of America for whom I currently work, which has made my life much better. All things being equal though, I'd rather be back in a metropolitan area. I miss just hopping on a bus or a train and going where I want when I want. I am blessed to be able to work remotely in my IT job, so my lady and I have developed a dynamic within our partnership to where her driving us everywhere doesn't weigh too heavily on her. Sometimes, when she lets me, I will rent a cab or a towncar through a service here in DE and give her an evening to where she doesn't have to drive just to break it up for her.
Sorry for the books guys, sometimes once I get typing it is hard to stop. But I guess people have the option of not reading it through if they get tired of me!
Have a great day all.
M


Re: So Excited to be Here!



My story: When I wrote this the first time, I had a hard time writing it because I’m usually a very private person and don’t normally say too much about myself, especially all at once. So, here we go, again.
I think my story starts out a little different than most others that appear on here. When I was three, it was discovered that I was hearing impaired. My mom who was a single mother of two at the time, managed to get me a set of hearing aids. She also fought the whole system and got me mainstreamed into public school, she absolutely did not want me segregated into the school for the deaf and only live in the deaf community. By the way, my mother is the most amazing person I know. I grew up knowing I could do anything just like anybody else. My parents (my mom eventually married the most wonderful man who became my dad) never treated me special or different because of my hearing impairment. If I had a weak moment, they pretty much told me to suck it up and deal with it (in a much nicer way of course).
But here’s the thing. I always hid the fact that I was hearing impaired, not because I’m ashamed of it, but because I didn’t want anybody to judge me, pity me, think less of me, or think I was incapable or incompetent. And if you were to meet me on the street, you’d never notice it unless you really paid attention as I do have a slight ‘accent’. HA-HA!
When I was in my late 20’s I was diagnosed with retinitis pigmentosa. At the time, it didn’t really bother me but it did explain a few things, such as why it was a bit more difficult to see in the dark. It seems to have gotten really bad in the last five years or so. I lost my driver’s license a little over a year ago – the state wouldn’t renew it even with a waiver from my eye doctor. Deep down, I’m ok with that because I’d rather it be that way than have it taken away because I caused a very bad accident. I wouldn’t want that guilt on my heart. But, it’s still hard because I’ve lost all my independence and I’ve always been fiercely independent. I hate having to rely on other people. Don’t get me wrong, I am so blessed to have an awesome village (you know the saying, ‘it takes a village to raise a child’, well, I always say it takes a village to take care of Tammie. LOL!).
I always hid my hearing impairment but I can’ hide the RP. I can’t blend in like used to. I can’t be independent like I used to. I feel very isolated. After reading about Mike and DeMarco, I do feel a bit more hopeful, so thank you both very much. I do have a few more thoughts, comments, questions but I’ll put them into another post because this one is getting a bit long. Thanks so much! Tammie


Re: So Excited to be Here!



Hi Mike. Thanks for sharing that. Honestly, I didn’t think anything morbid about it at all. Hmm, what does that say about my sense of humor? I figured it had something to do with the movie or something along that line.
I think that’s why I have such a curiosity about people, I love the whole psychology realm, especially when it comes to autism, Asperger's, and Alzheimer’s. I have a nephew who is autistic and a very good friend who’s son is autistic. We often share notes. I have several friends who’s parents have Alzheimer’s. I’ve been learning a bit more about schizophrenia recently. All very fascinating.
So, I’m doing an experiment to see if this works. I’m writing all this on a word document first and then pasting it into the post to see if it goes through the first time. Did it work?
By the way, if you don’t mind me asking, do have any memory of sight, since you lost it at such a young age?
My story in the next post . . .
Tammie


Re: So Excited to be Here!



Hi Tammie;
I have attempted to write this twice now, and I think I forgot to tag the first one, and my login may have timed-out for the second. Maybe 3 times is a charm?
If you see multiple versions, I guess you can just pick your favorite and disregard the others. haha!
I am a fan of Thomas Harris; I have read and seen all the Hannibal Lecter books/movies. I asure you, it's not because I have morbid serial tendencies or anything, but you might say forensic Psychiatry is sort of a hobby of mine. I believe nature and nurture go hand in hand when it comes to behavior. Life events can trigger behaviors caused by physiological abnormalities in the brain that may have otherwise remained dormant. Thomas Harris did real work and research when developing these characters in his books; even shadowing Behaviorial Scientists at the BSU in Quantico, VA.
I'm glad my screenname made you laugh, it is intended to be funny. My sense of humor can be a bit off center sometimes. Anyway, that is how hannibal8it came to be.
thanks for your response.
Mike


Re: So Excited to be Here!



Hey Tammie, thank you for you very much for reading my post's. I look forward in reading your content as well!!!!

DeMarco


Re: So Excited to be Here!



Hi deMarco. Nice to meet you. As you probably already saw, my name is Tammie. I wrote out my long, sad sob story a while ago but it hasn't shown up yet. I'm hoping I didn't lose it. But just in case I did, I wanted to let you know that I really liked your 'Let It Go' post. Beautiful. I will wait a bit longer to see if my other post pops up. If it doesn't, I will rewrite it.


Re: So Excited to be Here!



So Mike, 'hannibal8it'? I'm really curious to hear how that came about. You'll discover that about me the more I am on here, I am a very curious person and I love hearing stories about people's lives, childhood memories, how they came to live where they live when they started such a long ways a way, how their relationships work, who they admire and respect and why, their families, etc.
So far, right off the bat, I am curious about the 'hannibal8it'. It made me laugh (it probably shouldn't have but it did. Thanks for that.
I read your story. Very amazing. It made me realize a few things which I'll share in another post.
Nice to meet you, Mike. My name is Tammie. Thanks for responding.


Re: So Excited to be Here!



Glad to see you on here!!

I have toxoplasmosis since birth so my growing up in school was hard, dating sucked..lol and even some jobs were a little difficult at times.

Looking forward in hearing your story

DEMARCO
LOW VISION GUY


Re: So Excited to be Here!



Hello MeAsIAm
glad to see some new energy on this site.
Hope all is well with you and your family.
Glad to offer or accept any advice. I am totally blind from Retino Blastoma since first grade.
If there's anything specific you wanna chat about, let us know.
Mike


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