So I almost punched a hole in the wall today, but changed course and punched the window sill instead. Isaiah is 13 months old now and apparently training to be a track star. I was chasing him around the kitchen and as I bent down to grab/tickle him, I rammed my face into the back post of the bar stool. Usually when you get hurt you want to curse and punch something because of the pain. This punch was because of my frustration for not seeing the dumb thing! Sigh... But hey, you can only laugh about it after.
Anyways... it's been a while since I last posted (and forgive the writing in this post; I'm rushing). But after some complaining from some readers (especially my mother-in-law) and some new "encounters" I was encouraged to post again. Except this time I'm posting about my hearing loss. I began this blog to discuss my vision loss (hence the title "the world in a tunnel."). I supposed that's because it's new for me. I've been hearing impaired all my life, I don't really think about its affects on me anymore. But because I now follow other people with Ushers who talk about their hearing impairment and new experiences, I've realized more and more how having moderate-severe hearing loss affects my daily life. I've been following a blog by a fellow Usher Syndrome friend and as I read his blogs I gape with my mouth open thinking "is he my twin?" When I read his stories, experiences, feelings I feel like I'm reading my own memoirs. I encourage you to follow him also (http://usherssyndrome.blogspot.com). My good friend (shout out to Ronnie) also got me to watch what is now one of my favorite movies, The Hammer, about the first deaf wrestler to win a NCAA championship in wrestling (and is a current professional MMA fighter). So... here's the hearing side (but it won't be much):
Last year I was assigned an "instructional coach" to help me improve my teaching. After one of my classes we discussed the lesson I implemented involving small group discussion. I was disappointed in it but he was elated. He expressed some of the higher level thinking he heard from some students. He pointed out specific ideas students shared. I was baffled. How did you hear what those students said by sitting in the back of the room? I circulated around the room and couldn't pick up those comments. No wonder why my students seem wierded out when I hover into their personal space--I realized that it was the natural adaptation I made to compensate my inability to hear like normal people. That prompted new ideas to help me overcome that barrier. For example, having a small white board for each group to record their thoughts then hold it in the air for me to see. But with every accommodation, there are still set-backs. But from that, I learned the importance in communicating more what my hearing is like in different situations. I always felt that my hearing aids allowed me to hear like a hearing person; but that's not the case and as I learn the difference I can discover how to integrate into that hearing world; yet I am forever grateful for my hearing aids and other technology like my bluetooth that allows me to use the phone without speakerphone!
My hearing aids were a game changer for me. I hate it when my battery dies and freak out when I don't have any spare batteries with me or when my hearing aid doesn't work. I feel like I'm non-existent, or rather that the world is non-existent. Because I have been introduced to distinct sound with my hearing aids, I associate my hearing aids with my world being a reality. When I turn my hearing aids on, my world wakes up. Before that it's nothing but what sounds like low, soft, mumbling. Or in the words of a guy in a youtube video (posted below) it sounds like the teacher from Charlie Brown who mumbles "wah, wah, wah!" To stress the importance I place on my hearing aids, consider this story:
I took a trip to Gatlinburg with a group of friends during college. While there we hiked up Chimney Rocks. Instead of hiking a path, you actually jump from boulder to boulder up a river stream. Being the genius that I am, I climbed up a tree and hung upside down from a branch, a pool of water and boulders lying beneath me. Suddenly the limbed cracked and I dropped 10 feet into the pool of water. My friends froze fearing the worst, thinking my head had busted open on a boulder. In reality I landed in the water, my head falling between two boulders. While they feared my life, I jumped straight out fearing my the safety of my hearing aids screaming at someone to "hurry! Take them and dry them off!" To me, my hearing aids meant more than my life!
I have lots more to say, so another post will come soon... but I also want to encourage you to watch this video that includes interviews with people with Usher Syndrome. I'm so glad I've been following other people because they help explain what I fail to explain to myself!
Senseless about Usher Syndrome
Monday, September 17, 2012
Friday, May 25, 2012
It's the small things that annoy me
I read this from another blog published by Mark Dunning and it correlates well with a conversation I was having with someone earlier today:
"Many with Usher do just that after they are first diagnosed. They deal with the emotions on their own. They get back on their feet and get on with their lives. The problem is that Usher is a degenerative disease. You don’t just get it and get over it. You are constantly dealing with loss. You can drive then you can’t. You don’t need a cane then you do. You can do your job then you can’t. You can read a book without magnification then you can’t. It’s just one thing after another. Sure you get over one thing and move on, but then there’s another issue lurking on the horizon. It is exhausting."
When people ask how I'm coping, I usually tell them that the most difficult thing to grasp is not knowing how quickly my vision will deteriorate. I've adjusted well... but what and when is the next thing to go? I had some teens over at my house tonight to play ball, eat pizza, and hang out by a fire and one teen's dad tagged along. I watched the two play basketball together in my driveway and reminisced the days my dad and I would go to the park to play ball together. Those were some of my fondest times spent with him and as I watched this father-son play I thought to myself if I'll be able to do that with Isaiah. It was frustrating already trying to play ball with them (especially as the sun was going down, giving me less light!). My moments I'll have with my son (and future kids) have been in the forefront of my mind these past few weeks. Lately it's been difficult to coordinate rides for people to come to my house or for me to get somewhere and it's made me realize more and more that if I ever want "father-son" time I'll have to depend on someone else to get us where we need to go--how frustrating! So I've really been thinking ways around it and I've got a solution: buy a golf cart! We have a bike path nearby that leads to a lake and I see dads taking their kids in golf carts to go fishing or just hang out at the park. I don't know much about fishing, but for the time being, I know I could drive a golf cart on a one-lane bike path and no cross-traffic--so if that's how I can get father-son time, then that's what I'll do. So here's to saving money for a golf cart, getting one of my students to teach me fishing, and to hoping my vision stays well enough to drive a golf cart when Isaiah's old enough/ready to go!
Despite my fears about the future, it's really the small things that annoy me. I discover more and more how hard it is for me to find stuff! I've always been organized, but I feel I have to be OCD so as to not lose stuff. A month or so ago I was working on a patio in my backyard and was marking pavers with a permanent marker... I literally threw a cussing fit because I could not find (on multiple occasions) where I set down the marker. With a narrow scope of vision, I have to scan and scan and scan and to matters work, dark colors blend in together.... so a black permanent marker blends in with the mulch so I miss it. Or dropping a screw--Mary has had to tell me to leave the room to calm down because I get so mad that I can't find one screw after searching for 5 minutes (and she finds it in 5 seconds). Or that I can't soothe Isaiah in the middle of the night because I can't see anything without turning his lights on (well... I guess this one I can't complain about too much). These "small" things occur often and every time I get mad that simple tasks become difficult tasks for me. I have several home projects lined up this summer and I'm already brainstorming how I'm going to stay organized through the projects so I don't frustrate myself (after EVERY time I use the screw driver, I will place it in one designated spot so I always know where it is). The big things (like the paragraph above) I'm at peace with. The small things, however, I'm annoyed with!
"Many with Usher do just that after they are first diagnosed. They deal with the emotions on their own. They get back on their feet and get on with their lives. The problem is that Usher is a degenerative disease. You don’t just get it and get over it. You are constantly dealing with loss. You can drive then you can’t. You don’t need a cane then you do. You can do your job then you can’t. You can read a book without magnification then you can’t. It’s just one thing after another. Sure you get over one thing and move on, but then there’s another issue lurking on the horizon. It is exhausting."
When people ask how I'm coping, I usually tell them that the most difficult thing to grasp is not knowing how quickly my vision will deteriorate. I've adjusted well... but what and when is the next thing to go? I had some teens over at my house tonight to play ball, eat pizza, and hang out by a fire and one teen's dad tagged along. I watched the two play basketball together in my driveway and reminisced the days my dad and I would go to the park to play ball together. Those were some of my fondest times spent with him and as I watched this father-son play I thought to myself if I'll be able to do that with Isaiah. It was frustrating already trying to play ball with them (especially as the sun was going down, giving me less light!). My moments I'll have with my son (and future kids) have been in the forefront of my mind these past few weeks. Lately it's been difficult to coordinate rides for people to come to my house or for me to get somewhere and it's made me realize more and more that if I ever want "father-son" time I'll have to depend on someone else to get us where we need to go--how frustrating! So I've really been thinking ways around it and I've got a solution: buy a golf cart! We have a bike path nearby that leads to a lake and I see dads taking their kids in golf carts to go fishing or just hang out at the park. I don't know much about fishing, but for the time being, I know I could drive a golf cart on a one-lane bike path and no cross-traffic--so if that's how I can get father-son time, then that's what I'll do. So here's to saving money for a golf cart, getting one of my students to teach me fishing, and to hoping my vision stays well enough to drive a golf cart when Isaiah's old enough/ready to go!
Despite my fears about the future, it's really the small things that annoy me. I discover more and more how hard it is for me to find stuff! I've always been organized, but I feel I have to be OCD so as to not lose stuff. A month or so ago I was working on a patio in my backyard and was marking pavers with a permanent marker... I literally threw a cussing fit because I could not find (on multiple occasions) where I set down the marker. With a narrow scope of vision, I have to scan and scan and scan and to matters work, dark colors blend in together.... so a black permanent marker blends in with the mulch so I miss it. Or dropping a screw--Mary has had to tell me to leave the room to calm down because I get so mad that I can't find one screw after searching for 5 minutes (and she finds it in 5 seconds). Or that I can't soothe Isaiah in the middle of the night because I can't see anything without turning his lights on (well... I guess this one I can't complain about too much). These "small" things occur often and every time I get mad that simple tasks become difficult tasks for me. I have several home projects lined up this summer and I'm already brainstorming how I'm going to stay organized through the projects so I don't frustrate myself (after EVERY time I use the screw driver, I will place it in one designated spot so I always know where it is). The big things (like the paragraph above) I'm at peace with. The small things, however, I'm annoyed with!
Wednesday, February 8, 2012
Losing Independence
"Are you driving?" The was the first question I was asked after my most recent visual field test. I informed her that by my own choice, I was not. That for a while I was not driving at night but only recently had I stopped driving altogether.
"Good," she responded. "Because legally you can't." You need a field of vision of at least 70 degrees, I was around 65.
You may say, "I'm sorry, that's terrible news." I say, "God sees me as so important that he's going to have me chauffeured around instead." Here are some other positives:
-I get to spend more time with my wife (since she's driving me)
-No more paying to get my license renewed
-Save money on insurance (only have 1 car instead of 2 now!)
-I get to experience community when friends/family offer their services
While there are definite benefits to not driving, it can certainly be embarrassing when I'm sitting outside of school waiting for my wife to pick me up alongside other students waiting for their mommy to pick them up. But obviously it is frustrating for me to not be able to drive myself, but even more so I'm frustrated for my wife. She always has to tote my butt around town which takes more time out of her day, especially since it involves packing up our child every time. On top of that she's always driving kids around. It would be much easier if I could share the driving responsibilities, since some of our kids in our church need rides to hang out or attend bible study, etc. Ultimately I realized how much my wife stands by my side and how much she sacrifices to be my one and only when she missed our son's first Halloween because she spent the entire night picking up and dropping kids off for our youth Halloween party.
But again, life isn't about me. With this adjustment in life would there be a way to bring God glory? Initially, when Mary and I decided we no longer needed 2 cars, we decided we would sell the car or trade both our vehicles in for a newer car--and that makes most sense; put ourselves in a more "secure" situation. But the more we thought about it, the more we were convicted. God had provided for us in every step of our marriage. What did we have to gain when everything's already provided for? We didn't need a newer van or extra money from selling the car. But there are people out there who need a car. So... we gave it to someone who needed it. I've been forever grateful God gave us the opportunity to do that as I learn more and more what it means to "lose myself."
Driving isn't my only loss of independence. I am daily annoyed by small things like trying to find the screw that fell on the floor. I drop a screw and I get so mad because I'll spend 10 minutes looking for it and Mary comes into the room and finds it in 10 seconds. I'm nervous when carrying Isaiah--eventually door frames exit my field of vision and my fear of bumping Isaiah's head on the frame causes me to walk around the house much slower than I normally would. Running into 3 people at Sam's Club because it was so crowded. Or wandering aimlessly at night at the baseball field! The other night one of our coaches took the team outside at night for some extra conditioning... after a few minutes I went out trying to find them until a player ran to me and grabbed my arm to lead me to them! Whatever the case, I have to learn to not be ashamed. In light of losing some independence, this is the motto I have adopted:
"If you do not stand firm in faith, you shall not stand at all."--Isaiah 7:9b
"Good," she responded. "Because legally you can't." You need a field of vision of at least 70 degrees, I was around 65.
You may say, "I'm sorry, that's terrible news." I say, "God sees me as so important that he's going to have me chauffeured around instead." Here are some other positives:
-I get to spend more time with my wife (since she's driving me)
-No more paying to get my license renewed
-Save money on insurance (only have 1 car instead of 2 now!)
-I get to experience community when friends/family offer their services
While there are definite benefits to not driving, it can certainly be embarrassing when I'm sitting outside of school waiting for my wife to pick me up alongside other students waiting for their mommy to pick them up. But obviously it is frustrating for me to not be able to drive myself, but even more so I'm frustrated for my wife. She always has to tote my butt around town which takes more time out of her day, especially since it involves packing up our child every time. On top of that she's always driving kids around. It would be much easier if I could share the driving responsibilities, since some of our kids in our church need rides to hang out or attend bible study, etc. Ultimately I realized how much my wife stands by my side and how much she sacrifices to be my one and only when she missed our son's first Halloween because she spent the entire night picking up and dropping kids off for our youth Halloween party.
But again, life isn't about me. With this adjustment in life would there be a way to bring God glory? Initially, when Mary and I decided we no longer needed 2 cars, we decided we would sell the car or trade both our vehicles in for a newer car--and that makes most sense; put ourselves in a more "secure" situation. But the more we thought about it, the more we were convicted. God had provided for us in every step of our marriage. What did we have to gain when everything's already provided for? We didn't need a newer van or extra money from selling the car. But there are people out there who need a car. So... we gave it to someone who needed it. I've been forever grateful God gave us the opportunity to do that as I learn more and more what it means to "lose myself."
Driving isn't my only loss of independence. I am daily annoyed by small things like trying to find the screw that fell on the floor. I drop a screw and I get so mad because I'll spend 10 minutes looking for it and Mary comes into the room and finds it in 10 seconds. I'm nervous when carrying Isaiah--eventually door frames exit my field of vision and my fear of bumping Isaiah's head on the frame causes me to walk around the house much slower than I normally would. Running into 3 people at Sam's Club because it was so crowded. Or wandering aimlessly at night at the baseball field! The other night one of our coaches took the team outside at night for some extra conditioning... after a few minutes I went out trying to find them until a player ran to me and grabbed my arm to lead me to them! Whatever the case, I have to learn to not be ashamed. In light of losing some independence, this is the motto I have adopted:
"If you do not stand firm in faith, you shall not stand at all."--Isaiah 7:9b
Tuesday, January 31, 2012
The "Blind Stick"
My first week at Bible Study with my walking cane I asked for prayer from the group in regards to the adjustments I was making in life, particularly my new use of a walking cane issued by the Office of the Blind. Once we wrapped up all our prayer requests one person proceeded to pray; but once he got to praying for me, you could tell he didn't quite know what to call my cane: "We lift up Jeff in prayer as he makes adjustments with his...errr...uhh... blind.... ummm... stick." Two guys actually started laughing out loud and had to leave the room and it's still an inside joke today to call it a "blind stick." It wasn't so much what he called it that made it funny; it was his fumbling over what to call it. But I think that demonstrates a big point I'm wanting to make: it's an unfamiliar subject. I would use the word "ignorant" but it's too offending--after all, I was ignorant to it before, how can I expect every one else to know and understand?
There is a stigma attached to a blind cane. Whoever uses one, must be totally blind. That would explain why at the mall I can part the Red Sea. Shopping is so easy now. Walk into a mall, open a blind cane, and watch the crowds dodge out of your way! But then there are those who use logic and the result seems to be doubt. Someone will look at me, look at my cane, then look back at me. Those are the people who notice my glasses. And then you see their wheels turning: "If he's blind, why does he wear glasses?" But I can't fault people for behaving this way--who wouldn't think that? And this is the main issue that drove me to blog--to bring understanding! So, if I can see in front of me, why do I need a cane?
Put your toilet paper rolls over your eyes (cut it in half if you want to more closely resemble what I see at this point in my life). Notice how you can't see below you? So you have a choice... walk looking down and avoid tripping hazards, but sacrifice anticipating what's ahead and/or people walking in front of you. Or you can walk looking up, anticipate what's ahead but sacrifice immediate tripping hazards below you. For so long I had been walking looking down and never thought anything of it. I naturally adapted to what was best for me with no recollection of instantly switching from looking up to looking down. Eventually I realized how much daily life was hindered. How often I missed people saying hi to me because I was looking down and did not see them. How often I missed my students raising their hands because of looking down and when looking up in the classroom, how often I tripped over backpacks!
What the cane allows me to do is always look up and the cane will notify me of any immediate tripping hazards. I can now be more aware of people around me and objects ahead of me (no more smacking into tree branches and hearing my wife chuckle). Now, because of the night blindness I am 100% dependent on the cane (when I don't have a flashlight on me) but during the day I rely on scanning the room. When I enter a room, I look around and scan what's there. In other words, if I identify a trash can ahead, I'm not going to just walk straight and let my cane pick it up. I already know it's there, so I'll step to the side to avoid it. And I don't use it in the hallway at school because I know there's nothing to trip over.
But that scanning technique also discourages me from using the cane. When I'm in the store and I am making turns before my cane hits something, people are either thinking "wow, he really knows how to get around blind" or they're thinking "why does he need a cane? Is he faking it?" I know the latter thought exists because I've heard it: "You don't need a cane." But again, to them, it's "You see me talk to you, therefor you must see normal." I'd like to say I'm courageous enough to be "myself" and ignore all that, but it does get to me and I use my cane less than I should because of the social stigmas. Sometimes when I'm in public I feel like it'd be easier to just pretend I'm completely blind and purposely run into stuff! Because in addition to combating social stigmas, I personally feel guilt because I feel like I'm misleading everyone around me--the cane tells them I'm totally blind, but in reality I see in front of me.
A lot of times I'll use it for preventive measures. Like I said before, people dodge out of the way, but this includes people not in my line of vision. Take the mall, for example. It's a busy place and people walk in all directions. Often I'll hear Mary laugh and when I inquire why, she'll say something like "Some mom yanked her 5 year old out of the way--he was getting ready to walk in front of you." Since I don't see people in my peripheral, the cane warns them and crisis adverted (trust me, I've run into plenty of people before)! But what do I do at church when ten 2-3 year olds are running around--I walk in fear that I'm going to trip one of the kids!
This was way more than I wanted to type--I prefer to keep my posts shorter and I apologize this was long. But let me leave you with one story about how using a cane COULD be fun (I say "could" because my wife wouldn't let me do it). Mary and I had gone to Berea for something and while in town, a wedding was taking place at the Boone Tavern Hotel outside. We were at a nearby cafe eating a snack outside. As we were watching the guests and family being seated I thought I could implement a great social experiment. What would happen if I started walking in that direction with my cane and walked right into the wedding procession. How would the people react? Would someone "escort" me away or would people feel sympathetic and let me interrupt the wedding for the sake of not appearing rude? I personally thought it was a great idea, but the wife trumps in this case. No matter what their reaction would have been, you can't say that it wouldn't have been funny!
There is a stigma attached to a blind cane. Whoever uses one, must be totally blind. That would explain why at the mall I can part the Red Sea. Shopping is so easy now. Walk into a mall, open a blind cane, and watch the crowds dodge out of your way! But then there are those who use logic and the result seems to be doubt. Someone will look at me, look at my cane, then look back at me. Those are the people who notice my glasses. And then you see their wheels turning: "If he's blind, why does he wear glasses?" But I can't fault people for behaving this way--who wouldn't think that? And this is the main issue that drove me to blog--to bring understanding! So, if I can see in front of me, why do I need a cane?
Put your toilet paper rolls over your eyes (cut it in half if you want to more closely resemble what I see at this point in my life). Notice how you can't see below you? So you have a choice... walk looking down and avoid tripping hazards, but sacrifice anticipating what's ahead and/or people walking in front of you. Or you can walk looking up, anticipate what's ahead but sacrifice immediate tripping hazards below you. For so long I had been walking looking down and never thought anything of it. I naturally adapted to what was best for me with no recollection of instantly switching from looking up to looking down. Eventually I realized how much daily life was hindered. How often I missed people saying hi to me because I was looking down and did not see them. How often I missed my students raising their hands because of looking down and when looking up in the classroom, how often I tripped over backpacks!
What the cane allows me to do is always look up and the cane will notify me of any immediate tripping hazards. I can now be more aware of people around me and objects ahead of me (no more smacking into tree branches and hearing my wife chuckle). Now, because of the night blindness I am 100% dependent on the cane (when I don't have a flashlight on me) but during the day I rely on scanning the room. When I enter a room, I look around and scan what's there. In other words, if I identify a trash can ahead, I'm not going to just walk straight and let my cane pick it up. I already know it's there, so I'll step to the side to avoid it. And I don't use it in the hallway at school because I know there's nothing to trip over.
But that scanning technique also discourages me from using the cane. When I'm in the store and I am making turns before my cane hits something, people are either thinking "wow, he really knows how to get around blind" or they're thinking "why does he need a cane? Is he faking it?" I know the latter thought exists because I've heard it: "You don't need a cane." But again, to them, it's "You see me talk to you, therefor you must see normal." I'd like to say I'm courageous enough to be "myself" and ignore all that, but it does get to me and I use my cane less than I should because of the social stigmas. Sometimes when I'm in public I feel like it'd be easier to just pretend I'm completely blind and purposely run into stuff! Because in addition to combating social stigmas, I personally feel guilt because I feel like I'm misleading everyone around me--the cane tells them I'm totally blind, but in reality I see in front of me.
A lot of times I'll use it for preventive measures. Like I said before, people dodge out of the way, but this includes people not in my line of vision. Take the mall, for example. It's a busy place and people walk in all directions. Often I'll hear Mary laugh and when I inquire why, she'll say something like "Some mom yanked her 5 year old out of the way--he was getting ready to walk in front of you." Since I don't see people in my peripheral, the cane warns them and crisis adverted (trust me, I've run into plenty of people before)! But what do I do at church when ten 2-3 year olds are running around--I walk in fear that I'm going to trip one of the kids!
This was way more than I wanted to type--I prefer to keep my posts shorter and I apologize this was long. But let me leave you with one story about how using a cane COULD be fun (I say "could" because my wife wouldn't let me do it). Mary and I had gone to Berea for something and while in town, a wedding was taking place at the Boone Tavern Hotel outside. We were at a nearby cafe eating a snack outside. As we were watching the guests and family being seated I thought I could implement a great social experiment. What would happen if I started walking in that direction with my cane and walked right into the wedding procession. How would the people react? Would someone "escort" me away or would people feel sympathetic and let me interrupt the wedding for the sake of not appearing rude? I personally thought it was a great idea, but the wife trumps in this case. No matter what their reaction would have been, you can't say that it wouldn't have been funny!
Saturday, January 21, 2012
Top 5 Usher Moments
I don't like having long posts, but hopefully these stories will entertain you enough to hold your attention! I had my wife (Mary) help come up with my "Top 5 Usher Moments"--just reflecting on a few of several funny moments that wouldn't have happened if I could see "normally." What could would it be for us to not share our laughs with you? But, before I give you our top 5, I thought it might be good to explain what I actually see. As my title suggests and as I mentioned when explaining the diagnosis, the end result is tunnel vision. But just how big is my tunnel vision right now? After getting a visual field test done a few weeks ago my doctor said what I see is equivalent to holding a toilet paper roll over your eye (roll for each eye, which is approximately 30-35 degree field of vision for each). I personally feel I see a little better than that when there's light and quite a bit worse when it's darker; but at least that can give an indication of where I am and give perspective to my top 5 stories! So, we begin at #5:
5) I was visiting some of Mary's family and this was the first time some of them had seen me since being diagnosed. One of them was a 5 year old named Noah who is a very curious kid and will never accept anything at face value. So when he heard "Careful, he can't see you down there" he just had to test it. He took my hand, lead me to the couch and sat me down face to face. He then raised his arm:
"Do you see my hand?"
"No"
"How bout here?"
"No"
"What about here?"
"Yes"
"And here?"
"No"
Yeah... this went on for a good 5 minutes!
4) Mary and I were visiting a friend at a brand new recreation facility he was working at. We walked into the indoor pool and watched the kids play for a little bit. Now, something I did not know about Usher at this time is that even my central vision is affected; in this particular case, objects can "blend in together" if they are similar colors (I can't ever find the stack of coffee lids that sit on top of a black tablecloth at church). So... there we are standing there with a white wall behind us. Mary's standing to the left of me and for whatever reason I decided I wanted to stand on the other side of her. So... I went to walk behind her to get on her left side only a huge giant white pole stood in the way. I smacked into that thing so hard I recoiled and did all I could to "play it off" as all eyes were on me! Yeah... that pole blended into the wall--no idea it was there!
3) Mary and I went to eat at a great Italian restaurant in Frankfort. With it being so dim in restaurants these days I prefer using my walking cane. So, when the hostess grabbed 2 menus and called our name, I stood up, opened my cane, and followed to the table (the cane saved me from a bench and a chair, FYI). Once I went to sit down the hostess turns to my wife and says, "Ummm... I'm sorry we don't... err...does he need a braille menu because we don't have one." "Oh no, he's fine," she responded. The funny part is that she proceeds to take my menu and walks off! Mary couldn't do anything but laugh as I scooted my chair around the table to look at hers. (But please understand, I thought it was very considerate that the hostess asked that--I would have assumed I was completely blind if I was in that situation--as I'm sure most do when they see someone with a cane!)
2) At Kings Island my older brother (Dan) and I went to ride the scooby doo ghost ride (that's what it used to be called; not sure what it is now)... this ride is basically a kiddy ride, but it's tradition to ride it! So, the ride and line are all indoors, and it's DARK in there. Once you get to the actual ride, the booths are not stationary--they move on a giant turntable. So when it's your turn, you chase the booth and hop in. Well... as I said, it was dark so being night blind I really couldn't see anything. So Dan lead me through the whole line and once we got to the ride he walked behind me, trying to guide me by holding my shoulders and pushing me one way or another. But with the booths going by on a turntable it was like trying to pin the tail on a live donkey! Once he got me in the booth had stopped. After not moving for about 10 seconds I asked "What's going on?" He replied, "Ha... they had to stop the ride so you could get on." Yes, ladies and gentleman, a ride shut down for a reason other than lightning.
And we finish off with #1... this will take some explaining, but it's totally worth it:
1) One morning I hopped in the shower and realized I was out of soap. While normally I would have asked Mary to get me soap since I was already in the shower, she was sick all night so I didn't want to bother her. So, I hopped out of the shower and didn't bother putting a towel around me (besides, it's my house and I'm getting right back in the shower) and headed to the garage (our extra soap is in the garage in a plastic storage shelf). When you enter my garage from the house, the garage door is to the right and the storage shelf is on the opposite wall on the left. So as soon as I walk in, I don't see anything to the right or left of me obviously and I immediately look down to find the stairs--I go down the stairs, straight to the storage shelf, open it up and bend over to grab the soap off the very bottom shelf. Once I got the soap, I'm already looking down to see the stairs and I walk back into the house and finish my shower. By the time I got ready for work, Mary had woken up and greets me by saying, "Hey... did you know you left the garage open all night?"
"Please tell me you're lying."
"No... I just shut it. Why?"
"Cause that means I just showed our entire neighborhood my goods." Haha... and to make matters worse, it was dark outside, with a light in the garage and EVERY morning at 6:30 our neighbor across from us has a smoke on his front porch steps.... I was in my garage around 6:25.
If you have a funny incident you witnessed and want me to share... just let me know! Otherwise, look for my next post about my social frustrations but personal satisfaction with using a cane.
5) I was visiting some of Mary's family and this was the first time some of them had seen me since being diagnosed. One of them was a 5 year old named Noah who is a very curious kid and will never accept anything at face value. So when he heard "Careful, he can't see you down there" he just had to test it. He took my hand, lead me to the couch and sat me down face to face. He then raised his arm:
"Do you see my hand?"
"No"
"How bout here?"
"No"
"What about here?"
"Yes"
"And here?"
"No"
Yeah... this went on for a good 5 minutes!
4) Mary and I were visiting a friend at a brand new recreation facility he was working at. We walked into the indoor pool and watched the kids play for a little bit. Now, something I did not know about Usher at this time is that even my central vision is affected; in this particular case, objects can "blend in together" if they are similar colors (I can't ever find the stack of coffee lids that sit on top of a black tablecloth at church). So... there we are standing there with a white wall behind us. Mary's standing to the left of me and for whatever reason I decided I wanted to stand on the other side of her. So... I went to walk behind her to get on her left side only a huge giant white pole stood in the way. I smacked into that thing so hard I recoiled and did all I could to "play it off" as all eyes were on me! Yeah... that pole blended into the wall--no idea it was there!
3) Mary and I went to eat at a great Italian restaurant in Frankfort. With it being so dim in restaurants these days I prefer using my walking cane. So, when the hostess grabbed 2 menus and called our name, I stood up, opened my cane, and followed to the table (the cane saved me from a bench and a chair, FYI). Once I went to sit down the hostess turns to my wife and says, "Ummm... I'm sorry we don't... err...does he need a braille menu because we don't have one." "Oh no, he's fine," she responded. The funny part is that she proceeds to take my menu and walks off! Mary couldn't do anything but laugh as I scooted my chair around the table to look at hers. (But please understand, I thought it was very considerate that the hostess asked that--I would have assumed I was completely blind if I was in that situation--as I'm sure most do when they see someone with a cane!)
2) At Kings Island my older brother (Dan) and I went to ride the scooby doo ghost ride (that's what it used to be called; not sure what it is now)... this ride is basically a kiddy ride, but it's tradition to ride it! So, the ride and line are all indoors, and it's DARK in there. Once you get to the actual ride, the booths are not stationary--they move on a giant turntable. So when it's your turn, you chase the booth and hop in. Well... as I said, it was dark so being night blind I really couldn't see anything. So Dan lead me through the whole line and once we got to the ride he walked behind me, trying to guide me by holding my shoulders and pushing me one way or another. But with the booths going by on a turntable it was like trying to pin the tail on a live donkey! Once he got me in the booth had stopped. After not moving for about 10 seconds I asked "What's going on?" He replied, "Ha... they had to stop the ride so you could get on." Yes, ladies and gentleman, a ride shut down for a reason other than lightning.
And we finish off with #1... this will take some explaining, but it's totally worth it:
1) One morning I hopped in the shower and realized I was out of soap. While normally I would have asked Mary to get me soap since I was already in the shower, she was sick all night so I didn't want to bother her. So, I hopped out of the shower and didn't bother putting a towel around me (besides, it's my house and I'm getting right back in the shower) and headed to the garage (our extra soap is in the garage in a plastic storage shelf). When you enter my garage from the house, the garage door is to the right and the storage shelf is on the opposite wall on the left. So as soon as I walk in, I don't see anything to the right or left of me obviously and I immediately look down to find the stairs--I go down the stairs, straight to the storage shelf, open it up and bend over to grab the soap off the very bottom shelf. Once I got the soap, I'm already looking down to see the stairs and I walk back into the house and finish my shower. By the time I got ready for work, Mary had woken up and greets me by saying, "Hey... did you know you left the garage open all night?"
"Please tell me you're lying."
"No... I just shut it. Why?"
"Cause that means I just showed our entire neighborhood my goods." Haha... and to make matters worse, it was dark outside, with a light in the garage and EVERY morning at 6:30 our neighbor across from us has a smoke on his front porch steps.... I was in my garage around 6:25.
If you have a funny incident you witnessed and want me to share... just let me know! Otherwise, look for my next post about my social frustrations but personal satisfaction with using a cane.
Friday, January 13, 2012
My Job
In the previous post I mentioned that I was diagnosed in January of last year... so why did I wait so long to be open about it? Well... I had doubts about being able to perform at my job. I love teaching and I love my students, but I certainly had my doubts. If my students knew, would they take advantage of me? Would they see what they could get away with (you know, since I can't see)? Those questions drove me to secrecy and for the whole year my students just thought I was clumsy. After I "outed" myself, it's funny how many of my previous students asked "Is that why you kept tripping over the backpacks and running into tables?" and now how much less I hear "Mr. Bracken I've been raising my hand for 5 minutes!"
As a matter of fact, I talked to our principal to discuss a possible career change; one that would continue to allow me to work with students. We discussed guidance counseling. But I learned a lesson that I want everyone to note: Never jump to a conclusion without seeking proper guidance. Once I met with vocational rehabilitation I realized how ignorant I was. The Office of the Blind have been very diligent working with me to make sure I teach for as long as I want--these past couple months they have done a lot to solve problems I was dealing with in the classroom (i.e. rearranged my room so the desks are arranged deep and narrow instead of shallow and wide--this puts more students in my peripheral and use of a CCTV). Their help and encouragement has given me all the confidence I need (along with support of my family and co-workers).
I know my collaborative teacher had been wanting to tell the class for a long time what was going on. I could tell she was biting her tongue every time I bumped something or didn't see something. When I finally decided I definitely wanted to teach the rest of my life and that I could, I made it public on facebook--that was my collab's cue that she could finally say something! And it was just the next day that she had the opportunity to do that. I was in the front of the room covering something on the smart board. A student remarked that she couldn't see because I was in the way. So my solution was to step out of the way. Her solution was to get up and move to a different seat. Unfortunately I did not see her in my peripheral (of course) and so my 240 pound frame slammed her, well... much smaller frame, into the wall! I don't remember what she said, but it was enough for my collaborative teacher to finally tell the class (I think she was more relieved to get it out than I was! haha).
Since opening up about it at school, I've faced some new frustrations and hopefully my blogs will continue to clear up misunderstandings (later posts will focus more on what daily struggles might be and what I actually can/can't see). But from my first blog (the clues) I've students remind me of other stories I've forgotten, so the next post will be "Bracken's Top Ten Usher Moments"--be looking for it in a day or two!
As a matter of fact, I talked to our principal to discuss a possible career change; one that would continue to allow me to work with students. We discussed guidance counseling. But I learned a lesson that I want everyone to note: Never jump to a conclusion without seeking proper guidance. Once I met with vocational rehabilitation I realized how ignorant I was. The Office of the Blind have been very diligent working with me to make sure I teach for as long as I want--these past couple months they have done a lot to solve problems I was dealing with in the classroom (i.e. rearranged my room so the desks are arranged deep and narrow instead of shallow and wide--this puts more students in my peripheral and use of a CCTV). Their help and encouragement has given me all the confidence I need (along with support of my family and co-workers).
I know my collaborative teacher had been wanting to tell the class for a long time what was going on. I could tell she was biting her tongue every time I bumped something or didn't see something. When I finally decided I definitely wanted to teach the rest of my life and that I could, I made it public on facebook--that was my collab's cue that she could finally say something! And it was just the next day that she had the opportunity to do that. I was in the front of the room covering something on the smart board. A student remarked that she couldn't see because I was in the way. So my solution was to step out of the way. Her solution was to get up and move to a different seat. Unfortunately I did not see her in my peripheral (of course) and so my 240 pound frame slammed her, well... much smaller frame, into the wall! I don't remember what she said, but it was enough for my collaborative teacher to finally tell the class (I think she was more relieved to get it out than I was! haha).
Since opening up about it at school, I've faced some new frustrations and hopefully my blogs will continue to clear up misunderstandings (later posts will focus more on what daily struggles might be and what I actually can/can't see). But from my first blog (the clues) I've students remind me of other stories I've forgotten, so the next post will be "Bracken's Top Ten Usher Moments"--be looking for it in a day or two!
Sunday, January 8, 2012
My Reaction
"I can run some tests but I do not need to. I know what you have. It actually explains your hearing loss; it is called Usher Syndrome."
That was the first time I had heard of that. I had been around many Deaf people (primarily through my college years) and I had never heard of Usher Syndrome. But after being diagnosed and sharing with them I learned that many of them knew at least someone other than me with Usher. Apparently it is a rare genetic mutation, but it is also the leading cause of Deaf/Blindness. The gene is auto recessive which means both my parents are carriers (with the recessive gene) and their children stand a 25% chance of carrying the genetic mutation. My parents had 3 and I was the lucky one to get it! With Usher, there are 3 types of which I have type 2. It's characterized by significant hearing loss from an early age and then something called Retinitis Pigmentosa kicks in during the young adult years. RP involves several things, but the primary concern for me is the loss of peripheral vision and night blindness and there is no cure. The peripheral loss gradually gets worse and worse.
Now when I heard my diagnosis I didn't really think anything. I actually thought it was cool--after all these years I had an actual medical explanation for my hearing loss. It wasn't until I got into bed that night that it really hit me. At first I did not react too well. My wife was a month pregnant and all I could do was envision my life 10 years from now not being able to see my child do whatever he/she would be doing and that crushed my heart. The next day I got clarification--while my tunnel vision would continue to get worse, it almost never results in complete blindness! I would be able to see my son grow up--that's all I cared about. However, the most annoying thing about this diagnosis is there is no telling how long it will take until I see through a tunnel smaller than a dime. It could be 20 years or it could be 2 years. There are so many different variations of this genetic mutation that the rate of progress varies from person to person. I'd prefer to have some kind of timeline so I could prepare myself mentally if anything. Instead I think every day "I wonder how long it will be before I can't see Mary's face in one look?"
That was all my initial reaction. How I deal with it now? Well, I don't (sorta). Physically I do (use a walking cane when needed, always scanning my environment, use assistive technology, etc.) but mentally and spiritually I don't "deal with it." I'm still me; nothing's changed. I try to find as many ways possible to get humor out of it--sort of my way of letting others know that "it's okay" (and it's good to laugh). But ultimately how I really feel about all this is: To God be the glory. The message at church nailed it on the head. We were covering James chapter 1 and the 2nd verse says "I consider it pure joy when I encounter trials of any kind." This is my trial and I consider it pure joy.
I had a co-worker who I guess you would call a "charismatic Christian" who came into my room one morning offering prayer. Then she also said something along the lines of healing. She came to ask if I wanted to be healed because in her praying she got this sense that I was not to be healed and that I was content. And I was content. I could ask "Why me?" but really the question is "Why not me?" When I look at healings in the scripture, it's always for the sake of proclaiming who Christ is or God's authority. God has already accomplished that mission in me. I consider pure joy to face this trial. I delight in the fact that God created a uniqueness in me to be used as His vessel. I glory in the fact that my weakness will be made His strength (1 Corinthians). In physical activity, sure Usher has set me back. But what's that to me? Life isn't about me. In what really matters, Usher has propelled me forward.
That was the first time I had heard of that. I had been around many Deaf people (primarily through my college years) and I had never heard of Usher Syndrome. But after being diagnosed and sharing with them I learned that many of them knew at least someone other than me with Usher. Apparently it is a rare genetic mutation, but it is also the leading cause of Deaf/Blindness. The gene is auto recessive which means both my parents are carriers (with the recessive gene) and their children stand a 25% chance of carrying the genetic mutation. My parents had 3 and I was the lucky one to get it! With Usher, there are 3 types of which I have type 2. It's characterized by significant hearing loss from an early age and then something called Retinitis Pigmentosa kicks in during the young adult years. RP involves several things, but the primary concern for me is the loss of peripheral vision and night blindness and there is no cure. The peripheral loss gradually gets worse and worse.
Now when I heard my diagnosis I didn't really think anything. I actually thought it was cool--after all these years I had an actual medical explanation for my hearing loss. It wasn't until I got into bed that night that it really hit me. At first I did not react too well. My wife was a month pregnant and all I could do was envision my life 10 years from now not being able to see my child do whatever he/she would be doing and that crushed my heart. The next day I got clarification--while my tunnel vision would continue to get worse, it almost never results in complete blindness! I would be able to see my son grow up--that's all I cared about. However, the most annoying thing about this diagnosis is there is no telling how long it will take until I see through a tunnel smaller than a dime. It could be 20 years or it could be 2 years. There are so many different variations of this genetic mutation that the rate of progress varies from person to person. I'd prefer to have some kind of timeline so I could prepare myself mentally if anything. Instead I think every day "I wonder how long it will be before I can't see Mary's face in one look?"
That was all my initial reaction. How I deal with it now? Well, I don't (sorta). Physically I do (use a walking cane when needed, always scanning my environment, use assistive technology, etc.) but mentally and spiritually I don't "deal with it." I'm still me; nothing's changed. I try to find as many ways possible to get humor out of it--sort of my way of letting others know that "it's okay" (and it's good to laugh). But ultimately how I really feel about all this is: To God be the glory. The message at church nailed it on the head. We were covering James chapter 1 and the 2nd verse says "I consider it pure joy when I encounter trials of any kind." This is my trial and I consider it pure joy.
I had a co-worker who I guess you would call a "charismatic Christian" who came into my room one morning offering prayer. Then she also said something along the lines of healing. She came to ask if I wanted to be healed because in her praying she got this sense that I was not to be healed and that I was content. And I was content. I could ask "Why me?" but really the question is "Why not me?" When I look at healings in the scripture, it's always for the sake of proclaiming who Christ is or God's authority. God has already accomplished that mission in me. I consider pure joy to face this trial. I delight in the fact that God created a uniqueness in me to be used as His vessel. I glory in the fact that my weakness will be made His strength (1 Corinthians). In physical activity, sure Usher has set me back. But what's that to me? Life isn't about me. In what really matters, Usher has propelled me forward.
Thursday, January 5, 2012
The clues
So it's been a year since being diagnosed with Usher Syndrome and I've had many people encourage me to journal about my experiences, struggles, run-ins (literally), comical stories, etc. Obviously, I've decided to do that; but not for my sake. I've accepted my condition since day 2 of my diagnosis. Rather, I am journaling to inform you and to humor you. Not many people have a full understanding of what my condition involves, and in this situation ignorance is not bliss. But please, I BEG YOU, no sympathy allowed. Honestly, I'm rather annoyed when trying to tell a funny story related to my condition, and people immediately want to feel sorry. I am not blogging my experiences to have more people sympathize with me, I am doing it so more people can understand me.
As mentioned above, I was diagnosed a year ago. But in reality I should have been checked out a long time ago. A lot of the incidents that should have been clues of diminishing eye sight I just attributed it general clumsiness or lack of focus; and incidents that happened at night, I figured, "I just don't see well at night"--I didn't think something was actually wrong. In hindsight I see (haha get it? I don't even have peripheral sight, how can I have hindsight) that all those incidents pointed to a serious vision problem (It's not like one day I could see normal, then the next I couldn't. It was a very gradual loss, so gradual that at any point in time what I saw I thought was normal to see). Here are some of those incidents (in no particular order):
-Ran my shins into a bench at DQ (and had a family laugh at me)
-I couldn't see the entrance to a parking lot so when my friend said "turn here" I took him literally and turned right there. I hopped a curb and popped my tire
-I drove my car down a small embankment because I thought I was turning onto the road (ssshhh my parents still don't know that one)
-A student said "you don't see me stealing this candy bar?" (he was jokingly taking it from the concession stand waiting for my reaction... only I never reacted)
-I tripped over a parking lot curb when carrying groceries (and somehow managed to blame it on my wife :) )
-I tripped on a porch step which sent my head crashing into the front door at which point the dish I was carrying flew out of my hands (and blamed it on my wife again!)
-I bumped into someone spilling her coffee all over her (she was not very pleasant to me; to her, she was visible and thus I must be clumsy... in reality, I just didn't see her)
-I bumped into someone again and her food went flying (same reaction as above)
-"I've been waving this ice cream sandwhich in front of you for like 2 minutes"--and if you know me, you know I would never just pass up food
-"You didn't see me?"-Person A
-"You didn't see me?"-Person B
-"You didn't see me?"-Person C
-"Woah Bracken! Watch out!"-Person D
-"You didn't see me?"-Person E
I know there are several more, but I really had two final kickers that pushed me to get tested:
1) My mom sneaking up to the side of me and waving her hand to see if I would notice (obviously I didn't hear her, nor did I see her)
2) Playing basketball got difficult. I always try to remember what I used to be able to see and I never can; except for when it comes to basketball. Basketball gave me something tangible to compare. I know that back in high school I could see the wings when playing Center; but last year I couldn't.
And so, in January 2011 I got tested and was diagnosed with Usher Syndrome Type 2. My reaction to my diagnosis will be in the next blog
As mentioned above, I was diagnosed a year ago. But in reality I should have been checked out a long time ago. A lot of the incidents that should have been clues of diminishing eye sight I just attributed it general clumsiness or lack of focus; and incidents that happened at night, I figured, "I just don't see well at night"--I didn't think something was actually wrong. In hindsight I see (haha get it? I don't even have peripheral sight, how can I have hindsight) that all those incidents pointed to a serious vision problem (It's not like one day I could see normal, then the next I couldn't. It was a very gradual loss, so gradual that at any point in time what I saw I thought was normal to see). Here are some of those incidents (in no particular order):
-Ran my shins into a bench at DQ (and had a family laugh at me)
-I couldn't see the entrance to a parking lot so when my friend said "turn here" I took him literally and turned right there. I hopped a curb and popped my tire
-I drove my car down a small embankment because I thought I was turning onto the road (ssshhh my parents still don't know that one)
-A student said "you don't see me stealing this candy bar?" (he was jokingly taking it from the concession stand waiting for my reaction... only I never reacted)
-I tripped over a parking lot curb when carrying groceries (and somehow managed to blame it on my wife :) )
-I tripped on a porch step which sent my head crashing into the front door at which point the dish I was carrying flew out of my hands (and blamed it on my wife again!)
-I bumped into someone spilling her coffee all over her (she was not very pleasant to me; to her, she was visible and thus I must be clumsy... in reality, I just didn't see her)
-I bumped into someone again and her food went flying (same reaction as above)
-"I've been waving this ice cream sandwhich in front of you for like 2 minutes"--and if you know me, you know I would never just pass up food
-"You didn't see me?"-Person A
-"You didn't see me?"-Person B
-"You didn't see me?"-Person C
-"Woah Bracken! Watch out!"-Person D
-"You didn't see me?"-Person E
I know there are several more, but I really had two final kickers that pushed me to get tested:
1) My mom sneaking up to the side of me and waving her hand to see if I would notice (obviously I didn't hear her, nor did I see her)
2) Playing basketball got difficult. I always try to remember what I used to be able to see and I never can; except for when it comes to basketball. Basketball gave me something tangible to compare. I know that back in high school I could see the wings when playing Center; but last year I couldn't.
And so, in January 2011 I got tested and was diagnosed with Usher Syndrome Type 2. My reaction to my diagnosis will be in the next blog
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