Dealing with Usher Syndrome or any other disability is like dealing with death. You have the seven stages of Grief to deal with.
1. Shock and denial
2.Pain and Guilt
3.Anger and Bargaining
4.Depression, Reflection, and Lonliness
5. The Upward Turn
6. Reconstruction and working through
7.Acceptance and Hope
Granted, I haven't gone through all of these and not necessarily in this order. But I have experienced some of these. I have come to the point of understanding that I will most likely go blind. I don't think my family has come to that realization yet, but I expect they will go through some of these steps as well, especially my daughters. All I can do is let them express themselves and love them with all of my heart. I will always be there for them.
So I finally have gotten to the point of acceptance. I accept my fate, I accept my blindness and I accept that there is no cure. So I went and got a tattoo to honor my acceptance. If you don't know me, I love all things Celtic. So I got a triskele with a shamrock in its center to symbolize my good luck because I have it in spades where my family is concerned. I love my tattoo!
Saturday, June 5, 2010
Monday, May 24, 2010
I am NOT a charity case!
Remember when good ol' mom always said "If I've said it once, I've said it a million times!" Well, that applies to my life. So I am going to say it a million and one times I AM NOT A CHARITY CASE! If I need or want your help I will ask for it! I have already taken the first step by calling the Michigan Commission for the Blind. They gave me my cane, gave me Orientation and Mobility Training, bought me an alarm clock, a fire alarm for the hearing impaired, a doorbell, for the hearing impaired, and a few other things. Whenever I need something I call them and they do their best to help me or they point me in the right direction. I love them and cannot imagine my life without them. If you know someone who is legally blind definitely call the Commission for the Blind because there are so many things out there for the Blind that are wonderful!
Do I want to raise awareness in the community about Usher's? Yeah. I think more people need to learn about it and be aware of what it is because it is more common then everyone thinks, but is only HEAR SEE HOPE Foundation Fighting Usher Syndrome. They have many wonderful things on their website and have lots of fundraisers however, they are all in Seattle, Washington.
I am not angry. I have good days and I have bad days, but everyone has those whether they are perfectly healthy or not. I don't want or need sympathy. The most important thing to me right now are my girls and cherishing every moment that I have left to watch them grow up while I still have my vision. Maybe I won't lose it.... most likely I will. We all know that. Gabi knows it, Kairi is learning it, and Bri will learn it. All I can do is teach them how to be there for one another and for me. But the most important thing I can teach them is that vision or no vision I will always love them, that they are the most important people in my life, and that I will be on their side no matter what until the day I die.
So NO I am not a charity case. I expect everyone to treat me as a human being. I may not be able to hear you at times and definitely will not see you if you stand beside me, but if you want to talk to me or ask questions all you have to do is tap me on the shoulder and say "hi." I don't bite. I will talk to you, but remember if you treat me with disrespect then I will do the same. If you ask questions, I will answer them to the best of my ability. If you want to talk, I can still listen... I am not deaf, just hearing impaired. If you want to show me something then show me, I still have vision left.... just not the peripheal.... the cane prevents me from hugging the floor because it loves me! (Thanks Melissa for that.... love it!)
I am not a charity case because I am a human being!
Do I want to raise awareness in the community about Usher's? Yeah. I think more people need to learn about it and be aware of what it is because it is more common then everyone thinks, but is only HEAR SEE HOPE Foundation Fighting Usher Syndrome. They have many wonderful things on their website and have lots of fundraisers however, they are all in Seattle, Washington.
I am not angry. I have good days and I have bad days, but everyone has those whether they are perfectly healthy or not. I don't want or need sympathy. The most important thing to me right now are my girls and cherishing every moment that I have left to watch them grow up while I still have my vision. Maybe I won't lose it.... most likely I will. We all know that. Gabi knows it, Kairi is learning it, and Bri will learn it. All I can do is teach them how to be there for one another and for me. But the most important thing I can teach them is that vision or no vision I will always love them, that they are the most important people in my life, and that I will be on their side no matter what until the day I die.
So NO I am not a charity case. I expect everyone to treat me as a human being. I may not be able to hear you at times and definitely will not see you if you stand beside me, but if you want to talk to me or ask questions all you have to do is tap me on the shoulder and say "hi." I don't bite. I will talk to you, but remember if you treat me with disrespect then I will do the same. If you ask questions, I will answer them to the best of my ability. If you want to talk, I can still listen... I am not deaf, just hearing impaired. If you want to show me something then show me, I still have vision left.... just not the peripheal.... the cane prevents me from hugging the floor because it loves me! (Thanks Melissa for that.... love it!)
I am not a charity case because I am a human being!
Tuesday, May 11, 2010
Out with old and In with the new!
Recently I had another run-in with someone from past. We had a falling out due to my husband listing our house with someone else instead of this person. She claimed that it hurt her because she thought we were friends, she was there for the birth of my oldest daughter, and she was my matron-of-honor. Basically, she tried to lay a guilt trip on me. She was the one who didn't return five of my calls when we wanted to ask her to list the house so it was her loss.
That was several years ago. Ever since then she has been a thorn in my side. She recently put me in the spotlight on her Facebook page and said how she was sad to hear of my condition and wanted to know if there was a foundation for what I had because she wanted to make a donation and that I was in her thoughts.
That's great! Go ahead, but I don't need your pity. In fact, I don't want to be in your thoughts or on your Facebook wall. You are not my friend and why don't you just stick with what you do best.... holding grudges. I could say I am soo sorry that nobody lives up to your high expectations and that you always have to settle trying to makeover people with your taste in clothes, jewelry, and cars. Is there an organization that I can donate in your honor to help you? How does it feel to be pitied? Not good huh?
I am putting this behind me and I am moving forward with my life. That is why I have the cane, that is why I gave up my driver's license, and why I am choosing to ignore you! I have enough friends and family support to get my through my bad days and I don't want or need any negativity. So ... thank you lord for providing me with dignity of this disability. I know you have a plan for me and this syndrome. It surely does not include her!
That was several years ago. Ever since then she has been a thorn in my side. She recently put me in the spotlight on her Facebook page and said how she was sad to hear of my condition and wanted to know if there was a foundation for what I had because she wanted to make a donation and that I was in her thoughts.
That's great! Go ahead, but I don't need your pity. In fact, I don't want to be in your thoughts or on your Facebook wall. You are not my friend and why don't you just stick with what you do best.... holding grudges. I could say I am soo sorry that nobody lives up to your high expectations and that you always have to settle trying to makeover people with your taste in clothes, jewelry, and cars. Is there an organization that I can donate in your honor to help you? How does it feel to be pitied? Not good huh?
I am putting this behind me and I am moving forward with my life. That is why I have the cane, that is why I gave up my driver's license, and why I am choosing to ignore you! I have enough friends and family support to get my through my bad days and I don't want or need any negativity. So ... thank you lord for providing me with dignity of this disability. I know you have a plan for me and this syndrome. It surely does not include her!
Thursday, May 6, 2010
Oh Kalamazoo and your wicked roads!
Today was a test for me. I had to navigate West Michigan Ave. in downtown Kalamazoo.
We parked in a lot on the corner of Westnedge and West Michigan where I was given the instruction to go the Radisson which I believe is on Rose (Forgive me if I am wrong I haven't been feeling well today.) I then had to cross West Michigan. Butterflies in my stomach, cane pointed to the intersection, deep breath in then out, I waited for the surge and crossed the road. No big deal. My next instructions were to go to Edwards Street. I had to cross a one-way side street against the light, and cross a funky street where people kept doing rolling stops. My instructor told me I had to take a deep breath and just cross in front of the cars otherwise I would never get across. Now, having a car coming up behind you that you can't see is a completely different story then having a car coming at you. Talk about heart attack!
For lunch, my instructor took me Coney Island Hotdogs. I had my first official Coney Hot dog and it was good. I loved the old building... gold tin ceiling and tiles everywhere!
My next instruction was to head back to the Radisson hotel where I would learn escalators. Talk about a leap of faith! First, I have to feel the handrail to make sure it is going in the direction I want it to go, then I stick my cane on the stairs and listen. Finally, I just take a step not knowing whether or not I am on the edge or not.... very nervewracking! Oh! and to get off... I have to feel my cane become even with me and step off!
I think my cane instructor loves me! I am a model student and I do what he asks... apparently he usually meets with resistance. I figure I need to know this stuff and he has been doing this for 30 some years that I can trust him. He also thinks that I could take my girls on a train and visit Chicago on my own and not have any problems! Hmmmm, I think I just might have to plan an overnight trip to Chicago with my girls this summer to visit the Museum and the Aqaurium!
So next time you talk to a teacher, appreciate them.... they really do have our best interests at heart!
We parked in a lot on the corner of Westnedge and West Michigan where I was given the instruction to go the Radisson which I believe is on Rose (Forgive me if I am wrong I haven't been feeling well today.) I then had to cross West Michigan. Butterflies in my stomach, cane pointed to the intersection, deep breath in then out, I waited for the surge and crossed the road. No big deal. My next instructions were to go to Edwards Street. I had to cross a one-way side street against the light, and cross a funky street where people kept doing rolling stops. My instructor told me I had to take a deep breath and just cross in front of the cars otherwise I would never get across. Now, having a car coming up behind you that you can't see is a completely different story then having a car coming at you. Talk about heart attack!
For lunch, my instructor took me Coney Island Hotdogs. I had my first official Coney Hot dog and it was good. I loved the old building... gold tin ceiling and tiles everywhere!
My next instruction was to head back to the Radisson hotel where I would learn escalators. Talk about a leap of faith! First, I have to feel the handrail to make sure it is going in the direction I want it to go, then I stick my cane on the stairs and listen. Finally, I just take a step not knowing whether or not I am on the edge or not.... very nervewracking! Oh! and to get off... I have to feel my cane become even with me and step off!
I think my cane instructor loves me! I am a model student and I do what he asks... apparently he usually meets with resistance. I figure I need to know this stuff and he has been doing this for 30 some years that I can trust him. He also thinks that I could take my girls on a train and visit Chicago on my own and not have any problems! Hmmmm, I think I just might have to plan an overnight trip to Chicago with my girls this summer to visit the Museum and the Aqaurium!
So next time you talk to a teacher, appreciate them.... they really do have our best interests at heart!
Saturday, April 24, 2010
Chauffeur! Chauffeur! Where the Heck is the Chauffuer?
So I have basically turned my mom into my own personal chauffeur. I know she doesn't mind but at least I save all of my running for one day. Yesterday we went to the office so she could pick up her paycheck and visited a few people like my Aunt Robin. Then after that we went to the Secretary of State. We walked in and I grabbed a number.... 03.... they were on 95 so we sat and waited..... and waited.... and waited. It seemed that everybody there had no clue what they were doing there and forgot paperwork or had really dumb questions.
So I waited for the number 03 to be called. Finally, it was my turn! I walked up handed her my paperwork that says "Ms. Johnson is legally blind" and my drivers license. I held my head high, heart thumping in my chest, eyes misting and said "I'm surrending my license due to becoming legally blind." The kind lady took the paper work and looked it over, took my drivers license and began typing into the computer. I had to sign a piece of paper stating that I had canceled my license. In order to get a Michigan ID (even though you just canceled your license) you have to have proof you are who you are.... birth certificate, social security card, bill with your address on it and the canceled driver's license. So now I have to go back next week to get that.
After we left there we went straight to where my step-dad works to fax out a paper for my eye specialist so that I can get a handicap sticker. Fun. Then we went to Wal-Mart to get some stuff that I needed... like hearing aid batteries. Yup, they died yesterday. Finally, I was able to go home and rest for an hour before picking up the girls and taking them to the Meijer Fun Run where 1600 kids showed up to run! It was cold but we all had fun. Still appreciating your sight I hope!
So I waited for the number 03 to be called. Finally, it was my turn! I walked up handed her my paperwork that says "Ms. Johnson is legally blind" and my drivers license. I held my head high, heart thumping in my chest, eyes misting and said "I'm surrending my license due to becoming legally blind." The kind lady took the paper work and looked it over, took my drivers license and began typing into the computer. I had to sign a piece of paper stating that I had canceled my license. In order to get a Michigan ID (even though you just canceled your license) you have to have proof you are who you are.... birth certificate, social security card, bill with your address on it and the canceled driver's license. So now I have to go back next week to get that.
After we left there we went straight to where my step-dad works to fax out a paper for my eye specialist so that I can get a handicap sticker. Fun. Then we went to Wal-Mart to get some stuff that I needed... like hearing aid batteries. Yup, they died yesterday. Finally, I was able to go home and rest for an hour before picking up the girls and taking them to the Meijer Fun Run where 1600 kids showed up to run! It was cold but we all had fun. Still appreciating your sight I hope!
Saturday, April 17, 2010
On the Menu: Meltdown!
If I were a drinker, believe me, I'd be drinking whiskey.... the strongest there was.... I'd let it burn its way down my throat and sink to the bottom of my stomach. But since there is no alcohol in the house, much to my unhappiness, I won't be drinking. I could use a good glass of wine anybody got any recommendations? I just might buy some when I go grocery shopping.... if I ever get to the store.
You are probably wondering what caused my magnificent meltdown. Right? Well, it goes something like this. Today, I hate having Usher's. Today I hate being dependent on others. Today, I hate that my three beautiful girls having to live with a mom who has Usher's. Today, it seems like everyone in this house and my mom are ignoring me. Today, is just a bad day. One definitely for the books because I have had two meltdowns today and working on a third as I write this.
So before I have my third meltdown I just want to say.... look at your kids,take a look at all your pictures on the wall and photo albums, look at your car, look at everything around you and appreciate your sight because all of those things will be gone for me. I don't when but someday all I will see is nothing for the rest of my life. Now do you realize how much I am dependent on others? Doesn't sound fun does it? Believe me..... its not. And so begins meltdown number three.
You are probably wondering what caused my magnificent meltdown. Right? Well, it goes something like this. Today, I hate having Usher's. Today I hate being dependent on others. Today, I hate that my three beautiful girls having to live with a mom who has Usher's. Today, it seems like everyone in this house and my mom are ignoring me. Today, is just a bad day. One definitely for the books because I have had two meltdowns today and working on a third as I write this.
So before I have my third meltdown I just want to say.... look at your kids,take a look at all your pictures on the wall and photo albums, look at your car, look at everything around you and appreciate your sight because all of those things will be gone for me. I don't when but someday all I will see is nothing for the rest of my life. Now do you realize how much I am dependent on others? Doesn't sound fun does it? Believe me..... its not. And so begins meltdown number three.
Friday, April 16, 2010
New Gadgets
On Wednesday of this week I got my new gadgets. It is pretty cool to know that there is technology available to people who have Usher's or even blind or hearing impaired.
Before this technology I would be doing laundry in the bathroom and not be able to hear anybody knocking on the door. Now I have a doorbell. Push the top button and it makes an abnormally loud chime. Push the bottom button and it makes this black box on my belt vibrate. Now I know when people are at my door. The cool thing is that at night when I go to bed I charge this black box so if anyone rings the doorbell my bed will vibrate!
I also got a new smoke alarm! When that goes off either the black box or my bed will vibrate depending on the time of the day. I also got a little sound monitor so that when B goes to bed I turn on this black box and put in her room. If she wakes up in the middle of the night it will wake me up.
The only other thing I got was a new timer. It flashes light and vibrates in my pocket. So now I have quite a few vibrators and none of them very enjoyable! LOL! But if they help me I guess I can live with them.
Before this technology I would be doing laundry in the bathroom and not be able to hear anybody knocking on the door. Now I have a doorbell. Push the top button and it makes an abnormally loud chime. Push the bottom button and it makes this black box on my belt vibrate. Now I know when people are at my door. The cool thing is that at night when I go to bed I charge this black box so if anyone rings the doorbell my bed will vibrate!
I also got a new smoke alarm! When that goes off either the black box or my bed will vibrate depending on the time of the day. I also got a little sound monitor so that when B goes to bed I turn on this black box and put in her room. If she wakes up in the middle of the night it will wake me up.
The only other thing I got was a new timer. It flashes light and vibrates in my pocket. So now I have quite a few vibrators and none of them very enjoyable! LOL! But if they help me I guess I can live with them.
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