I still have to raise funds for the ABI. I haven’t mentioned it on here all that much because I didn’t know the best approach. Some say to just come out and ask for it, but that is not the way I was raised. Even while out I don’t speak until I am spoken to. So I guess the way someone was raised has a heck of a lot to do with this.
I have been trying to think of something to do, make, sell, etc. I need something for people to buy or to give them for donating. The problem is that I can’t think of anything and no one is helping me think. T-shirts is not really a good fund raiser in the U.S. right now because well no one is wanting to spend money unless they have to.
It’s not as urgent to get these funds anymore, the plan is to wait as long as possible to remove this other tumor since it will lleave me absolutely and totally deaf and blind. If I am able to get the implant then, I’ll have to live in a silent dark world with only touch to appreciate for 6 to 8 weeks until I can get the implant turned on. If I am not able to get the implant at that time because of not having the funds, then there is no telling how long I could be in this type of world. That scares me very bad. I have to make sure I have the funds raised by the time I go for that surgery. If it grows, since it’s already big it can’t grow much more and still be safe, it will have to be taken care of right away, then I’ll lose everything I have and do not know how to function total deaf and blind. At least if it continues to go slowly, I adapt each day without even knowing it. So it is important to raise the money for this implant. I don’t want to sound desprat, but in reality I am. If I don’t get this ABI, life won’t even be worth anything anymore. I’ll lose every bit of independence, communication because people either don’t know sign or think it takes too long. Sighted deaf people have an advantage here, they can write on a notebook or have others do it. That won’t do me any good if I can’t see what they are writing.
I just need help trying to figure out how to raise these remaining funds, arorund $20,000 dollars. If you have any ideas or suggestions please let me know. You can e-mail me, or leave a comment. Thank you everyone for your support.
by Sarah, on 02.16.09 @ 6:15 pm
Hey Holly, why do you have to raise funds for an ABI? I thought your insurance was going to be covering it?
Sarah
by hollyalonzo, on 02.16.09 @ 6:50 pm
Hi Sarah. Well insurance is North Carolina Medicaid. They are back to saying that they will not cover the cost of an ABI for anyone 21 and over. I am 22. Also, medicaid here is messed up it seems. I am getting bills and bills and when I call about them, they tell me that medicaid paid a lot of it but whatever medicaid did not cover, than I am responsible for. I got a bill Friday for like $6,000. Obviously NC medicaid isn’t covering much of this previous surgery, and I didn’t even get the ABI. I’m not sure what I am going to do about these bills. I will call around again next week and make sure that I have to pay themm in full and then see if I can get some kind of medical assistance. I don’t know.
by Jamie, on 02.18.09 @ 6:42 pm
Good luck with the maze. I wish our nation did not punish people with medical conditions. Be aware of your rights and responsibilities. If there’s a denial of coverage, get it in writing, and pursue appeals process before the deadline. There should be a patient advocate to assist you, too. Sometimes Medicaid just needs the doctor to certify that something is medically necessary. Sometimes, you need to have procedures authorized beforehand. Hopefully your doctors’ staff is adept at handling billing issues. But you need to be careful about raising funds yourself: Medicaid can drop you in an instant, and many hospitals and doctors will refuse to see anyone without insurance. Continuity of care is so important for us and I want you to maintain access. I think these probs apply to all insurances, to some extent. A back and forth between insurer and providers to try to come out as well as possible, while the patient gets stuck in middle. Very confusing and wastes of resources. Try to do the best you can healthwise, and remember the system itself is broken.
by Yvonne Foong, on 02.20.09 @ 10:14 am
Holly, others can give you a hundred ideas on how to raise funds but you need to be persistent. You are not here to do business, you are selling t-shirts to raise awareness to your cause and plight. People want to see your persistence and determination, and how important these t-shirts are to you, before they would support. But if you jump from idea to idea, simply because one doesn’t seem to work, then people will feel you’re not focused on your goals. If you are not focused, how will people trust that this is what you trea;lly want?
by hollyalonzo, on 02.20.09 @ 10:38 am
Hi Jamie, The account that the funds are in is in my Mom’s name. We also have it set up for medical funds,so it can’t be counted against her for taxes. She doesn’t have insurance, so nothing to worry about there. Thanks for the concern.
Yvonne, I have tried, but people want to see pictures. I am blind, my husband is blind, Isaiah is too little to take a picture, we ahve no family here to take a picture for us. Picture taking is not plasable for someone that is completely blind and has no sighted help. I’ve explained many times, that even if we walk up to someone on the sidewalk people will ignore you. This has hapened I can’t tell you how many times, and not even for asking them to take a picture. Just something as simple as asking someone for directions. It’s very annoying when someone is there, you know they are there beause you hear them. You ask them a question and they walk off, or act like they didn’t hear you. That makes you start wondering, is someone really there? This has been my experience many times. For blind people, the disability is obvious before you are even given a chance. Deaf people, no one really knows the person is deaf until they try to speak to that person. But, we as blind people are alawys recognized even from a distance because ofthe cane or guide dog, or holding onto someone’s arm or something will gi ve us away.
If something is not working, then why stick with it? I can’t just walk around asking people to buy shirts for their friends even if they can’t fit it, because I have nowhere to walk. I can’t get around without assistance, can’t see people approaching, can’t communicate with the public anymore because I can’t understand what they are saying. If you don’t ahve a sighted and/or sighted hearing person to help you do the things you needs to do, then it won’t matter how hard you try. Am I making any sense?
by Yvonne Foong, on 02.23.09 @ 6:43 pm
Holly, I didn’t know you walked up to random people on the streets asking complete strangers for support. I get support from affiliations and the friends of friends. Such as people in my own church. and the churches my friends go to. We asked line dancers because one of my friend, a middle-age aunty, is a line dancer who garnered support from fellow line dancers she knows. We also raise funds in my college and university because the people there knows me and sees me around. We appeal to fellow writers through social networks for writers. My friends share my story with their family, relatives, and friends too. And through them, we reach out of gundreds and thousands of people.
But in order to do this, we need to be firm in what we want to do. For me, it has always been designing and selling t-shirts. Most guys did not like the original Heart4Hope t-shirt that I sent to you for fundraising. But they bought nevertheless, even if they didn’t like or couldn’t fit, because they wanted to support me. Even if that shirt they bought ended up in a corner of their wardrobe or given to someone else, they felt that at least they have supporter me.
Right now, my friends still do other things to help. Someone baked cookies with her mother helping out, and handed me packets of cookies to sell yesterday alonside my t-shirts, books, and caps. But ultimately, people want to buy the t-shirts. The cookies were a bonus. Practically-speaking, cookies can be eaten, they nourish the body, while most of us have plenty of t-shirts and there are always nicer ones in stores. But people buy my t-shirts because it makes them feel involved in the cause. It touches a soft spot in people.
I have not begin to tell you the difficulties I face being deaf and raising funds. I am sure if I was blind instead of deaf, my challenges will be different, but not any lesser or more. Without friends and family members by my side, I would not be able to tell people effectively about my plight either. And I’m not the kind of person who persuades people into anything. So the t-shirts become a representation of myself, a piece of myself that I share with people. And acquiantances I barely knew coming forth to assist me spread the cause, become my voice.
by Yvonne Foong, on 02.23.09 @ 7:04 pm
By the way Holly, I included a lot of earrings and badges with specially designed cartoon characters,in the box of t-shirts I sent you. Last I checked, you said they were there. What happened to them? Did you show them to people?