Just when I get used to the way things are with my hearing, it changes.
It started out just a little muffled. It was even still on the normal range. I thought it was bad then. Little did I know…
Then, around last winter it dropped to a moderate hearing loss. I still had a relatively high percentage of speech recognition.
In spring of this year, it dropped to a moderate to severe hearing loss and my speech recognition went from somewhere in the 80’s down to the 30’s.
I thought this was as bad as it could get. Being totally blind, I rely on my hearing so much, and I could hardly understand anyone.
Well, now I’m finding out. It can get worse, and it has. I have no had a hearing test lately to see what the levels are, but I know that it has gotten much worse.
I used to be able to hear Edward talking from across the room. I didn’t know what he was saying, but I knew that he was saying something.
Now I don’t know if he is talking unless he yells very loudly, but I still don’t know what he is saying. Isaiah is about the only one I can still hear, because his voice is very high and with my hearing loss, I keep the higher tones the longest.
But, I can’t understand what Isaiah is saying to me most of the time, unless he signs or acts out what he is saying. It’s very frustrating to not even be able to understand what my child is saying.
I can not understand speech often at all. People have to fingerspell into myahnd for me to know what they are saying or asking.
I would almost be willing to bet that I would have better hearing with the ABI than I do right now. The problem is, getting an ABI.
I have to raise the needed funds for me to get this surgery. It’s my only option now. I don’t have enough hearing to hang on to anymore.
I still need $22,305.00 before they will even schedule the surgery.
I am not sure what else to do to try to raise the money. It’s hard to raise funds whenever people aren’t willing to help.
I can not afford all of that, and I am limited in what I can do. I am too disabled to work three jobs to save up the money. I need people’s help. Without their help, I will be completely and totally deaf and blind.
I would hope that this is something people would not want to see happen to me. After all, if they were faced with this challenge, and no other option, wouldn’t they want help?
I know that there isn’t much hearing left to lose. The question is, how long will it last? Or will it plunge me into a completely deaf world over night when I still am mm nowhere near close to raising the funds for the ABI? I can just pray that doesn’t happen to me until I am prepared to have the surgery needed.
by Carin, on 10.16.09 @ 10:46 am
I know you’re frustrated, and I would be too. This can’t be easy, and having that in mind, I feel a little heartless writing this message. But I have to do it. It burns my butt and makes my blood boil to see you wag your finger at us, the very ones who have been trying to help you. I have spread the word. I have sent you money. And I’m not the only one. When this project started, if you googled “save Holly’s hearing,” the first 10 results were full of other forums asking people to give to your cause. That’s pretty impressive. But I am not rich. And if you followed the news at all, you would know that nobody is right now. We’re all trying to keep ourselves alive. We are not made of money, as much as we don’t want to see you go deaf. And having you act so very ungrateful angers me to no end and makes me not want to send you one more red cent. I am saying this for your benefit. The way you present yourself as if you just expect us to all snap to and deposit money in your bank account won’t make it happen. You do not respond to comments, and you do not update your talley of amounts donated. That in itself is a slap in the face. I know for a fact that you have received more than $1.64. I have sent more than $1.64. And don’t even get me started on your book. You have still not sent it. I’m sure that was a clerical mistake, but for the less understanding among us, it looks like a scam. People start to wonder if you really need the money. Holly, people don’t personally know you. You have to present a good internet image, or nothing will happen.
I’m not saying this to be a horrible human being. I care about you getting that ABI and I hope it does what they promise. But that is why I’m saying this. I want you to succeed! I’m not saying kiss our feet, but a little gratitude and a little effort on your part would be nice.
by hollyalonzo, on 10.16.09 @ 1:55 pm
Karen, you misunderstand. I am not “waging my finger” at anyone who has helped me. I am very grateul for it. What I am saying is that people do not match their words with their actions. I’ve had chuches that would not even try to help me, and many others say that they would if they could but do’t and then turn around and buy a new computer.
To the ones who have actually done things to help me, I WILL FOREVER APPRECIATE IT. it lets me know that yes some people do care about me. Sorry for any caps. I didn’t realize they were on and I can’t remember what I’ve typed so I am leaving them. But no I’m not shouting.
by Carin, on 10.19.09 @ 2:58 pm
Yeah I know what you mean about people not matching actions with words. I remember trying to help a blind guy from Pakistan to come over to Canada to study. People were all full of words, but when it came time to help me, they didn’t. It sucks.
by Yvonne Foong, on 10.25.09 @ 9:32 am
Nello Holly
I am not there with you in AR so I really don’t know what is inhibiting the progress of your fundraising. But there have been many missed opportunities, it seems. I am really not clear about your situation so I can’t comment. Let me just share a bit about my own fundraising.
While raising funds for surgery, I am always very busy and tired managing t-shirt and book stocks, carrying loads, attending and speaking at events, meeting people, thinking of new strategies and how to improve the old. Whenever I have to raise funds for an urgent surgery, I lose weight and stay fitter.
It is true that people won’t just donate to us. We have to work for it. There is a lot more that I don’t write and talk about, but I live it out.
While raising funds for surgeries, I also get to meet with new people and get to know them.
But I cannot do it alone, so I involve my mother and friends. I’d ask them to help me out not just by donating but managing sales and campaigning so everyone feels that they are involved and get to play a part.
In week, I am at home 2-3 days while other times are spent on social activities,classes, fundraising activities and what not.
I can also give you a list of my associations and social networks that I belong to.
Do you think that you might have a better advantage if you start including you parents? Because you obviously cannot do this alone and people won’t donate until you put in more effort.
Do think about it.
by hollyalonzo, on 10.31.09 @ 12:46 pm
HiYvonne,
First of all I do no live in a big city wih hundreds of thousand or even millions of people. I live in a small town. There are no events to speak at etc. I would have to proote an event just for me and I am 99% posative that only a few people would show up. Secondly, deaf blind ranges from a totally deaf to visually impaired, to Totally blind and hard of hearing, to visually impaired and hard of hearing, to completly deaf and blind. Although I am not completely yet, I can not hear well enough to know anything that is going on around me. Since I can not see, I can not see someone walking past my table and engage them in conersation to snag their interest. There is no public transportation for me to get to a bigger city to try to raise funds, and even if there was I wouldn’t know where to go or what to do. In America very few iindividuals raise funds for anything. It is always through an orginization and most of the time they have marketing and pr people to help them. I called t he mall near by to try to set up0 a table there for one day. It would cost me $600 to do that. I explained what I was trying to do, but it doesn’t matter. It’s still $600 for one day. I have called book stores and churhes any way to get some help ad no one ever calls back. Some say they wil email me and never do. My parents work and can not take me everywhere all of the time. I can not drive. I have no friends available to take me places or help me. Most of my local friends have moved away, or I’ve lost contact with them because of my hearing loss. Not many people can sign to me, and unless they can sign to me we can not communicate. This is a very difficult situation, and it’s hard when you have all of my disabilities, plus no one to help.
by Yvonne Foong, on 11.01.09 @ 11:52 am
Hi Holly,
Recently, you said that you were going to get Edward called a PR agency. How did that go?
by hollyalonzo, on 11.02.09 @ 10:42 am
Hi Yvonne,
Edward ccalled and spoke with a few P agencies. The cheapest one quoted us $6,000 which is nearly all I’ve raised. I am not exactly sure of a time line for that fee, but still I can not do that if they won’t give me a break and make it cheaper or donate their services to me.
by Yvonne Foong, on 11.06.09 @ 2:19 am
Hi Holly,
Have you seen their portfolio and whether their services are good and effective?
by hollyalonzo, on 11.13.09 @ 8:21 pm
No I have no ideahow effective their services are. In the quote it mentioned what they would do. All Edward told me is that they would send things to many tv stations. There may have been more that he didn’t tell me. I don’t know.
by Yvonne Foong, on 11.20.09 @ 1:29 am
Hi Holly
If you find a PR agency that is good, you might want to consider investing in them no matter what the cost. Even if you keep all the donation money to yourself but you are not getting anywhere, then then it might be better to take the gamble. It’s your call.