Things I used to do or enjoy aren’t exactly fun for me anymore.
Not being able to hear or see, isolates me even though people don’t intent to do that. It happens anyway.
I want to be part of my son’s life, even though I am deaf and blind. But that is hard when there are hearing, or hearing and sighted people around. They are more fun than me.
Isaiah’s vocabulary is very big these days. Unfortunately, I only know a few signs. I can show him all of the sign for the words he know. So, communication becomes an issue. He knows what he wants to tell me, and he knows how to voice it. But, he is unsure how to tell me personally, to sign it.
Then he just wants to go to someone hearing and say it. And who could blame him? They know what he is saying.
We put up the Christmas tree. Isaiah says it’s pretty. But, I didn’t help much. I was left in my dark and silent world…again. I don’t blame anyone for it. It’s hard, and people aren’t very used to this. Especially considering how fast things changed and me being in “limbo” with this hearing loss.
I just want to be part of my son’s life, and communicate with him as easy as everyone else does. I am not sure how right now. The only possible way is for me myself to learn sign language. Not just a few words. But an entire vocabulary. Then I can show Isaiah and he’ll be able to tell me the things he is saying.
It’s rough being deaf and blind. Missing out on the things that go on around you, feeling isolated in this big world. Especially around the holidays. Not being able to communicate with others when you want to. It’s not easy. I can only hope that once I get more used to, or adapted, to this deaf and blind world I live in, thing will get easier and I can do the activities I used to enjoy, yet again. Until then, I have to tough it out and be strong.
by keisha, on 12.15.09 @ 11:43 pm
Hi Holly,
You’re probably going to be angry at this but you need to stop whining. Your blog really sounds whiny and woe is me.
So what? We’ve all got our issues, it’s a question of what next?
Though I sympathize, I do not pity you but instead, I am bored by your constant whining.
Step up. It’s not easy but it’s doable. There’s always a way to survive the insurvivable.
You can start lookinhg at what you have, not what you don’t have.
by keisha, on 12.16.09 @ 12:01 am
“I’ve never seen a wild thing
Feel sorry for itself
A bird will fall frozen dead, from its bough
And will never feel sorry for itself”
by hollyalonzo, on 12.16.09 @ 12:31 pm
First off, this is my life. You and most others don’t have a clue. You are not blind, you are not deaf. You are not physically impaired and having to rely on others. Putting ear plus in, and a blind fold on doesn’t count either. You can take it off and go back to your normal life.
I am not sure the word blind is meaning anything. I can’t drive a car. I can’t go in unfamiliar places with my wheelchair. Things I can do? I can read, and I love doing it. B at if all I talked about on here was books, I’m sure you would get bored with that as well.
Right now I am in a transition period. I got for many hours at a time not talking or touching a single person. Although I love my son, I can’t e en communicate with him. Call it whining if you want. But I call it stating a fact. This is what NF2 has done to me, and yes it has taken many things from me. I am currently working on stopping or shrinking the tumors, but I’ll never get back what was lost because of nerve damage. Until you live a few days in my shoes, you have no room to talk.
by Sarah, on 12.16.09 @ 10:14 pm
Keisha how dare you? If you don’t like what Holly is writing, do yourself and all of us a favor and close the browser window and leave. Holly is not whining. She is venting and she has every right to do so, especially given her circumstances. Not many of us, even those of us who suffer with NF2, can imagine what it’s like to be both deaf and blind. Being just deaf or just blind is hard enough in itself.
Until you are in Holly’s situation, a young woman and mother in the prime of her life unable to communicate with your young son and cut off from so much of the world, you really can’t sit there and call her a whiner. I would be so scared if I was in Holly’s position and I honestly think she is so brave. Writing entries in this blog is her outlet and it helps her to cope.
You are incredibly rude and insensitive and should be ashamed of yourself for making such comments. Have a little compassion.
by keisha, on 12.17.09 @ 5:00 am
Hi Holly,
I am not saying what I said without merit.
Again, we’ve all got our own issues.
For the record, I’ve almost become a quadriplegic and neared death in 2007. I still live with many disabilities because of a damaged spine.
I have nf 2 and am hard-of-hearing too.
Does that qualify me to be in your shoes? No.
Is my situation more or less deprived than yours? I can’t say.
However, I do know that life is difficult for us.
The reason why I commented was to give you a kick in the butt because well, I simply care and do not wish to see you go down a miserable spiral. That is what inevitably happens when you whine.
If you do not want my advice, please delete all my comments immediately and I shall not comment again.
For all you know, the probable reason why people don’t help you as much as they could is for this very reason.
by keisha, on 12.17.09 @ 5:04 am
Sarah:
First and foremost, my idea of compassion is of what I had previously stated.
I cannot comprehend what Holly has and is going through, but again, we all have our issues as I am sure you do too.
WHO is to determine the severity? NO ONE.
by keisha, on 12.17.09 @ 5:13 am
Sarah:
If it’s rude and insensitive as you say, that’s just too darn bad that you do not understand WHY I said it.
Call it venting, but her blog to me and to others I am sure, sounds very much like WHINING and thus, is very off-putting.
Again, if my comments are not wanted here, I shall very happy to walk away.
by hollyalonzo, on 12.17.09 @ 4:38 pm
Almost, and Near death. I have been near death myself. All of us with NF2 probably have, or will be at some point. But, NF2 is not the only issue here, even though it is the cause. Can you still walk on your own two feet? This Morning, I fell, yet again. I was being self-sufficient with no one around, and I lost my balance while standing up to finishing putting my pants on and button them. I fell forwards, hit my stomach on my night stand, and lost my breath. I had to sit there in the floor until I was able again to get up and try it again. My legs are so sore from where I have fallen many times a day and landed hard on the floor, or on a toy in the floor.
We all have our own issues, yes. Whoever wants to write about those issues, more power to them. This is my blog, my place to vent, and if I want to write about my personal issues, I will. I am not forcing anyone to read it.
As for people helping me, if you only understood what I have been trying to get acrossed. This is America. The people here do not always help other Americans. They expect the government to help the person. After all, that is why they pay taxes and most people think they pay too many taxes as it is. People here in the U.S. do not raise funds for medical. Most of the people raising funds, have a 501C tax exempt number. The only way to get one of these is to become an organization, a church, or chariety. If you are not 501C, any money you raise or have in the bank, is money that you have3 to pay taxes on when tax time rolls around. There are PR agents, and marketing specialists that are employeed at foundations and charieties. Their only purpose is to raise more money for the foundation. Then, the foundation provides services or products to the people who have become3 their clientsProblem is, there are no foundations to help me.See my precdicament?
And just so that you are aware, the denifinition of sympathy is to fererl pity. I just would limke people t o understand, not feel sorry for me If they understood what this condition is doing to me, then they would be educated and/or help someone like this in the future. Life is rough, but I’ll make it. I want my determination to pay off and help someone if possible though.
by keisha, on 12.18.09 @ 12:33 am
it’s obvious that you are/not getting my point, so i shall not comment further or visit this site again.
by Tom, on 12.18.09 @ 10:12 pm
I must have a different idea of WHINING than this Keisha person. With all you’ve been through,and are still going hrough, Holly, you have earned the right to whine as long and as loud as you want.
by hollyalonzo, on 12.18.09 @ 11:47 pm
Thanks for your suport Sarah and Tom. Keisha, I have never asked you to stop reading or visiting this blog, nor have I asked you to stop commenting. But, if that’s the way you feel, it’s your choice in the ende.