Friday, September 29, 2006

Footprints in the Sand

When I was growing up (pre-RP, before I even knew about RP) I used to look at blind people and think that I was happy to be hard-of-hearing. If given a choice, I would choose deafness over blindness. I am used to it. Now that I have to deal with both, it’s devastating. Am I being punished? I have to look at it this way, what purpose do I have? Why did God choose me to have Usher Syndrome? God does not make mistakes. He has a plan for everything.

But I will tell you one thing, it’s made me who I am today. If I were hearing-sighted, what kind of person would I have turned out to be? Would I be hard-hearted? Stuck-up? Serving time in prison? I am very sensitive to other people’s pain. I have to focus on the positives though it can be hard. Some days I am tempted to snap at people. God knows what your limits are. He does not give you more than what you can handle.

I also like to think of it this way, too, that it’s God’s way of keeping me close to Him, to depend on Him. Of course, there are times when I have a pity party. I have no choice but to move on. Just adjusting, living day-to-day, step-by-step. I am not alone. He is always with me. I have to remember to hand the reins over to Him and trust Him.

Wednesday, September 27, 2006

More Cute Things Kids Do

When my youngest was three, I was putting up Christmas decorations. I got to the box with the Christmas stockings. Hers was the one with Rudolph. She asked me if that one was hers. I said, “Yep, that’s yours.” I proceeded to hang up the stockings on the railing of our stairway that led up to the second story. She asked me, “Where is the other one?” I smiled at her and I told her that she only needed one. A moment later she said that it was too big and it didn’t fit.

I stopped what I was doing to turn around and look at her. She had her little foot in the big stocking and was trying to hop around in it with her hands holding up the stocking over her knees. I just cracked up. It was so funny. I shook my head at her. “No, no, you don’t wear it. We hang it up for Santa Claus. He fills it up with all kinds of goodies for good girls and boys.”

Ah, they are cuties, aren’t they?

Friday, September 15, 2006

Me First!

When I got my driver’s license for the first time, my mother advised, “Always watch the car in front of the one behind you.” And my mother never drove! She knew how to drive, but never took the road test to be licensed. She had six children to raise.

I often thought of this quote over the years. You often think that other drivers aren’t to be trusted, but you have to think of your own driving, too.

I think that there are more impaired drivers out there than you think. I am not talking about the obvious (bad sight, severely mental retarded, those who had too much to drink, etc), either.

I am talking about the “me firsters.” They cut in front of you. Your heart stops, you slow down a little, and breathe a sigh of relief when you return to a safe driving distance (or mutter a cuss word under your breath as you recover). Or those on the highways…they are in such a hurry that they are passing everyone and once you reach city limits, they are right in front of you. All that hurrying didn’t get them that far after all. Did this save them time? Again, I could hear my mother saying, “They are late for their own funerals.” They are an accident waiting to happen.

Let’s not forget road rage. This can be aggravating. Perhaps a requirement for Driver’s Ed. should be anger management. Okay, maybe this is a little extreme. But not without merit.

This is one other reason, besides common sense, that finally drove me to give up driving for good. I didn't want to take any more chances. My guardian angels were working overtime trying to keep me safe. With my limited vision, my reaction time would not be up to par with anyone with good vision. All those “me firsters” out there make it unsafe. Driving is not a competitive sport. Who’s racing? Leave that for the Nascar drivers. If you are late for work or something, then be more responsible. Get an earlier start. And be more patient. It only takes a split second for something to happen. Don’t take chances. You may not get another one.

And for all those drivers out there, who like me, were reluctant to give up driving-no matter how careful you think you are...there are other alternatives. You may not like it or want to hear it. I don't like it either, but it's better than being sorry. Don't take chances. Some of those "me firsters" may have a valid reason to cut in front of you or pass you if you are driving too slow or too cautiously. I am not saying that it gives them the right to do that. I know it may just be plain irresponsiblity or "invincible" thinking of the "me firsters," but it's just food for thought.

Will anyone listen? Will anyone care?

Sunday, September 10, 2006

In Remembrance

Light a candle. Take a few moments of silence to remember all who have perished in the 9-11 terrorist attacks on the WTC and the Pentagon. And let’s not forget the plane that was taken down in PA. Think about the firemen and policemen on duty that fateful day. Think about all those who have been affected by the attacks.

I was reading today’s paper saying that it’s been 5 years since the attacks. How many of us remember what we were doing that day, that very hour, of the attacks? It is forever imprinted in my mind what I was doing that day.

I got a gravy job at work that day. I was assembling knobs and wrapping them at the factory I worked at. Some of my co-workers were gathered around a radio. I didn’t pay much attention to them. I wanted to get my quota. One of the ladies came over by me and said that a plane crashed into one of the Twin Towers. I admit I had a hard time digesting this in my mind. Did I hear her right? Did she say that a plane hit the WTC? Isn’t that a wee bit too low for a plane to go? If there was engine trouble, don’t the pilot(s) try to avoid crashing into a congested area? It was surreal. Then there were more exclamations from the others. They came over by me and said that a second plane hit the other tower.

That got my attention. This was no accident. Is this the start of WWIII? It was a somber day. I couldn’t wait to get home. I didn’t have the option of taking the rest of the day off. I had started riding with another co-worker the past two years to take the 30-40 minute commute to work because it was dark at 5:00 in the morning. I am nightblind.

Once I got home, I just hugged my kids. My youngest was only a year old at the time. I was just happy to be home. How many people worried when their loved ones didn’t come home? How many people were able to go home that night?

Thursday, September 07, 2006


I am a student. I mentioned earlier that I gave up driving –I had to be reasonable about that.

So, I took a bus to school. It was such a humble experience. It was like you felt like you were “poor” or maybe lost your driver’s license because of DUI, delinquent payments, or too many accidents…or something like that. There is so much pride involved.

I sat in the bus in near tears. It was just awful. It’s a new phase in my life I will have to get used to. I still don’t like it.

They say you go through a grieving process when you find out about anything serious, such as cancer or death. So, when I found out I had Usher Syndrome, I went through denial for years. It was like, I can see. I am not going blind. I can live with my hearing problem. I can accept it. I have dealt with it all my life. But this - this disorder is another ballgame. I didn't grow up with it.

I have an older brother and sister who also have this disorder. (I really don’t like to call it a disease.) I got my eyes checked when I was 21 or 22 and the doctor didn’t see anything wrong at the time. I don’t know if it was because it was too early in the stages or what. But I held on to that hope. As I got into my mid-twenties, I started having night vision problems. I couldn’t find the car door handle at night. I knew it was there, but it took some time to find it. I told myself it was some kind of “sympathy” thing because my older siblings had it. It was all in my head.

When I was almost 29, I finally went back to see the eye doctor again. A different one. It was confirmed that I did have Usher. I went home bawling my eyes out. I didn’t want to believe it.

Life settled a bit. I had a toddler to take care of. I pretty much pushed Usher in the back of my mind. Maybe if I ignored it, it would go away.

I get frustrated when I drop a pen on the floor. I couldn’t find it. I would go on all fours and press my cheek on the floor to find it. That always seemed to work. Just look for anything that stood out like a pimple on the floor.

Sometimes I have one of my kids point out the “missing” object for me. I joke about the silly gopher (remember Chaddyshack?) sneaking into the house, stealing and moving things around. I would say something like, “The gopher came in and took the cover for the butter.” All I had to do was scan a little more to the right and I would find it. Anyone with retinitis pigmentosa (RP) can attest to this.

I still have central vision. The vision is gone in the peripheral region. I can see movement and sometimes identify something out of the corner of my eye. It’s like a doughnut in front of your eyes. You can see on the outer edges of the doughnut and in the middle of the doughnut, but you can’t see through the doughnut. Of course, I have been told by some that the vision I have peripherally is called “islands” of sight or “holes” in the vision. I want to point out that the area of vision that is lost is not "black." It's just...not there. The best way to descirbe it is as a very thick piece of plastic that you cannot see through.

So, you go through more anger and you know it’s no use to bargain. I seem to be stuck between anger and depression part of the grieving process. I keep going back and forth. I don’t know if I accepted it. It’s more I resigned to it, but I still have bouts of frustration and despair.

Back to the bus scene: I am feeling humble and fighting tears. I don’t like the feeling that my independence is gone. Maybe some may argue and say that I am being independent just by riding the bus or taxi, but it sure feels like “dependence.” I hope that this gets easier as time goes on or the more I use other modes of transportation.

I have enough sight so that I can move around on my own. I have problems with localization of sounds. I am not sure where the sound is coming from. I have one ear that has more hearing loss than the other. It does not help me with sounds. I can hear a car but I don’t know which direction it is coming from. Sometimes I can’t see it right away until it zooms pass me.

I can hear speech, though I may have to ask for repeats. Some people are really good about it and some get irritated.

I have yet to try the white cane. I don’t know how I feel about that. It would really symbolize the fact that I have vision problems. It's hard for me to be open about it and tell people this. Sometimes I can hide the disablity, though it is not as easy as it used to be. Can you imagine using the cane and having people think that you are “faking” it because you can “see?” People need to be educated that some people using the cane are not 100% blind. Some have low vision with some sight. They say that you are your best advocate. It’s up to you to educate others.

Of course, I know that no one can really understand what we go through. Not really. They can try to imagine it, but unless you have RP/Usher, you really can't. Empathy is the only thing left, I guess. It's hard to put yourself in someone else's shoes. How can anyone walk in another's shoes if they aren't really "living" it? It's not a matter of putting ear plugs in and wearing blindfolds or special vision goggles that stimulate the vision loss when you know you can always unplug your ears and take the blindfold or goggles off. It's not permanent.

Wednesday, September 06, 2006


What a shock. Steve Irwin was killed by, of all things, a stingray. He seemed invincible--like he was the "King" of the animal kingdom. Nothing would touch him. He was in control. Almost like he knew "animalese" or used mind-control on the animals. He was our modern-day Tarzan. Will the real "Tarzan" stand up? (Let's not get into apes here. It's just a different kind of jungle.)

Many said he most likely would meet his death by a poisonous snake or a croc. It was a fluke. What are the odds of getting killed by a stingray? Irony is at work here. Or was it? Who knows.

Perhaps it's because he thought he knew animals too well and got too big for his breeches. No one is perfect.

God has it written in the Book of Life when, how, where, and why we die. We really can't defeat death. It finds us. Or in the case of suicide, well, it's still in the Book of Life. He has a plan for all of us and there is a purpose for us while we are living.

Will there be another "Croc Hunter?"

Rest in peace, Irwin.

Tuesday, September 05, 2006

Funnel Vision

This blog is just more or less a conversation describing what I can do. I am just going to let the words flow in and out of my head or rather, should I say, "let my fingers do the walking (typing)?"

The world is getting narrower and narrower. A genetic disorder called Usher Syndrome slowly narrows my field of vision due to retinitis pigmentosa while my hearing is lost in the higher frequencies. I am labeled "deafblind," though I don't really think of myself as that because in my mind, it's I am not totally deaf or blind. I have less than 20 degrees of central vision. LIke the title of my blog, I am literally blind-sided. I wear hearing aids. I have severe-profound loss in both ears. I was born hard-of-hearing, but my hearing has worsened over time. Then the night blindness started. Then every once in a while floaters and lightning flashes are having a party in one or both of my eyes

What's it like? You bump into things that are in your way. Sometimes you see it, and sometimes you don't. It's like you see the object in the distance, and once you get there, it's outta mind, outta sight and then you bang your shin into something. They call it "tunnel vision." It's like looking through a tunnel, but really it's "funnel vision." You can see more in the distance, but not up close. I have bruises on my shins that won't go away. They are ugly and (faded) brownish in color.

There are days when you have someone tell you that there's a lawn chair or something in front of you. If you didn't see it, you are like, thanks for the warning. But if you did see it, then you get mad because you saw it and get defensive. "I see it!" You really don't want anyone's help, but you know that sometimes it's a necessary evil.

I gave up driving earlier this year. It was so hard. Your gone. You don't have the option of going out at a whim. I haven't driven in the dark for about a decade. Slowly, you admit to yourself that you are putting yourself at risk and you know it's time to "hang up the keys." No wonder elderly people aren't ready to stop driving. They don't want to depend on anyone. It happens. I knew I was becoming a "granny driver" when people started passing me on a 25 mile speed zone in the city. I was too cautious. I was afraid that someone may cut in front of me or worse, a kid walking or biking. I was scanning the road, and both sides of the road. Not a good thing.

I was happy to have a wonderful support group of other friends affected with Usher Syndrome Type II who have been there. I don't know what I would have done without them. I would probably have coped, but maybe I would not have bounced back as quickly if I didn't. The hardest part is not being able to get your kids after school. It's hard to run around when they have after-school activities. I am glad that the oldest isn't as athletically inclined so I don't have to worry too much at this point except for the time when it gets too cold. They may have to bundle up very warmly. Kids used to walk 2 miles in the winter in the old days. I (may) have to arrange for rides. Call other parents. That is not so easy as it sounds. I don't hear so well on the phone so it's frustrating to speak to other people and arrange rides for your kids. (Sigh)

I feel like my oldest, who is 12 now, is growing up too fast. She is mature (well, sometimes-she just has an "old" soul) beyond her years. She knows how to fingerspell the alphabet. I am culturally hearing, meaning that I mostly speak with hearing people though I do know sign language. It has been increasingly harder for me to understand other people. My hearing is not what it used to be. My vision is slowly diminishing so it's harder to lip-read. Talk about double whammy!