Last summer my brother's brother-in-law biked across America as a fundraiser for Alzheimer. Needless to say, I was impressed and a bit jealous. I loved the idea of biking across America (and for a good cause at that), and so it got me thinking about how biking could be a useful hobby for myself. Luckily, my good friend Clint Conrad loaned me his mountain bike. Biking became a helpful substitute to playing basketball (it is incredibly exhausting and disappointing trying to play basketball now and I only play with my family who understands my condition!).
What began as a fun hobby turned into a new way to lighten Mary's burden. Nothing taught me selfless love (aside from Christ's death) like Mary's constant sacrifices to allow me to continue my ambitions and live my life. It was time to return the favor. Before long my parents bought me a trailer to hitch to the back of the bike. Not only did I start taking Zae to the park on my own (Mary gets a break AND she doesn't have to drive us!) but I also started grocery shopping. I'm not sure how much my grocery shopping "helped" Mary--I think she felt just as stressed with my repeated phone calls asking where certain items in the store were. Do you know how much longer it takes to find items on the shelf with tunnel vision? Not to mention how slowly I walk through the aisles constantly scanning for other shoppers to not run into.
Over the last couple months, I've taken this a step further. I have begun biking home from work so Mary does not have to drive across town to get me (and sometimes wait for me to finish up my work). Confused, many have asked, "How are you able to bike home?" They ask knowing I cannot drive home so they don't understand the difference. Remember, I can still see in front of me! I could drive straight and I can bike straight, always seeing what is ahead. The difference is the traffic. Driving involves cross traffic, multiple lanes, etc. When I bike home from work it is 90% through neighborhoods and the park. Did I almost run into an elderly couple taking a walk? Yes, but at the same time they knew I was coming as they have to have heard my pep talk I was shouting to myself: "Come on Jeff! You got this! You can do it! Don't quit pansy. It's not too cold! Keep going! Come on!" (it was 40 degrees and had just started raining and I was almost home--at the last second I saw them! I was embarrassed, haha). But I am blessed to ride my bike because for 6 1/2 miles and 35 minutes I have relived the days of living in silence, strengthening my prayer life, and drawn closer to God in worship.
There are days where I bike in complete silence, not thinking about anything. As the verse in Psalm goes, "Be still and know that I am God." Biking through the park has allowed for intense silence that results in adoration for my Creator. Having that solitude where I am forced to be without distraction has also pushed me toward more intentional prayer. Sometimes I pray about multiple things and other times I have prayed for one thing almost the entire bike ride. On other days I listen to worship music from my new smartphone and stream it to my blue tooth connected to my hearing aids. This may not seem like a big deal, but it's been a long time since I've just listened to music and having this chance to drown myself in praise for God reminds me of how I define myself as a child of God in constant pursuit of His Holiness. I had forgotten the words to many worship songs and listening to them again has brought my "heart's desire" to a new element that was missing from just my bible reading... Lastly, this has all prepared me to be in the right mindset when I walk into my house of chaos with the kids, dogs, night class, dinner preparations, etc
But at the same time, this has taught me something else about selfless love for my wife. My biking turned into ways to help ease Mary's burden, and to a large extent I think I have. But it has also enlightened me about the importance of having silence and solitude (not just bible time--but time away from kids, away from dogs, away from whatever)... not too long ago it dawned on me that I was reaping all these benefits of my solitude time biking home, but in seeing the benefits for me, I had not bothered to find ways for Mary to have that. So here's what having Usher Syndrome has boiled down to: It has made me the recipient of extreme sacrificial and selfless love and in turn, has forced me to find ways to return that extreme sacrificial and selfless love. .
Monday, February 9, 2015
Friday, April 26, 2013
House Search
"My thoughts are not your thoughts, nor your ways my ways," says the Lord. "Just as the heavens are higher than the earth, my thoughts are higher than your thoughts and my ways than your ways. For as rain and snow fall from the heavens and do not return their until they have watered there earth, making it bring forth and sprout, giving seed to the sower and food to the eater, so shall my word be that goes from my mouth. It shall not return to me empty, but it shall accomplish that which I have purpose and succeed that in which I have sent it."--Isaiah 55:10-12
That passage has been particularly important to my wife and myself these past few weeks. Many blind choose to live in the city for public transportation, but that's not where I am, so transportation can be an issue. A few months ago we put our house on the market in hopes to buy a house right behind the park where rec leagues play (and it's walking distance to the high school baseball field). We were never interested in moving out of our current house but when this house went up for sale we sought out God's direction (the owner was Mary's long term sub during her maternity leave last year). The location couldn't be any better. It's a bike ride distance to Kroger so no more being left at home with no milk. The backyard backs right into left field of one of the little league fields so I can take Isaiah to his ball games (assuming he will play) and to the park by myself. As long as I coach, I can walk to and from the high school field. Bottom line: I can be more independent and Mary can carry less of a burden (and others who drive me places).
The house itself is also convenient for me. With the exception of the front foyer, the house is lit up well with giant windows in the back of the house and the lighter the better. In addition to that, it is very open and spacious, so manuevering through the house would be much easier (especially as the vision deterioates). It could easily be usher proofed!
Sadly, I feel like our chances of getting that house are less and less by the day. A lot of things happened, but in a nutshell the recent buyers of our home backed out and we are back to square one. When I heard this, I felt almost like I did when we found out Mary miscarried. The same question I asked then, I asked yesterday: "Why would you (God) take us this far just to pull the rug out from under us?" And then my selfish desires come out:
1) "I have to live with this condition, so I should at least be allowed to have this."
2) "We gave our car away, getting this house as a reward would be nice."
3) "Think of how much more we could serve you with this house."
4) "Don't you want me to have easy ways to spend quality time with just me and Zae?"
5) "Everybody else wants us to have this house."
But then I quote Isaiah 55 (above) and am brought back to the humble state I should be in. Time and time again God has shown me how his thoughts and ways are higher than mine. But it's frustrating not knowing what His thoughts and ways are! But I will trust in his divine providence that he will provide in whatever way He chooses....
Oh, and by the way... there's a great app that can help you understand what I see. Download "visionsim" on your i-phone/i-pad and find the eye disease called "Retinitis Pigmentosa." That will bring up all the characteristics of my condition but you can also launch the simulator where you can play with the scroll bar and the tunnel will get bigger/smaller (and other things). It's been neat being in a room and showing Mary what I see! So you can play around with that (in a standard room with good lighting, scroll about 40% across the bottom and that's me). It's a neat app!
That passage has been particularly important to my wife and myself these past few weeks. Many blind choose to live in the city for public transportation, but that's not where I am, so transportation can be an issue. A few months ago we put our house on the market in hopes to buy a house right behind the park where rec leagues play (and it's walking distance to the high school baseball field). We were never interested in moving out of our current house but when this house went up for sale we sought out God's direction (the owner was Mary's long term sub during her maternity leave last year). The location couldn't be any better. It's a bike ride distance to Kroger so no more being left at home with no milk. The backyard backs right into left field of one of the little league fields so I can take Isaiah to his ball games (assuming he will play) and to the park by myself. As long as I coach, I can walk to and from the high school field. Bottom line: I can be more independent and Mary can carry less of a burden (and others who drive me places).
The house itself is also convenient for me. With the exception of the front foyer, the house is lit up well with giant windows in the back of the house and the lighter the better. In addition to that, it is very open and spacious, so manuevering through the house would be much easier (especially as the vision deterioates). It could easily be usher proofed!
Sadly, I feel like our chances of getting that house are less and less by the day. A lot of things happened, but in a nutshell the recent buyers of our home backed out and we are back to square one. When I heard this, I felt almost like I did when we found out Mary miscarried. The same question I asked then, I asked yesterday: "Why would you (God) take us this far just to pull the rug out from under us?" And then my selfish desires come out:
1) "I have to live with this condition, so I should at least be allowed to have this."
2) "We gave our car away, getting this house as a reward would be nice."
3) "Think of how much more we could serve you with this house."
4) "Don't you want me to have easy ways to spend quality time with just me and Zae?"
5) "Everybody else wants us to have this house."
But then I quote Isaiah 55 (above) and am brought back to the humble state I should be in. Time and time again God has shown me how his thoughts and ways are higher than mine. But it's frustrating not knowing what His thoughts and ways are! But I will trust in his divine providence that he will provide in whatever way He chooses....
Oh, and by the way... there's a great app that can help you understand what I see. Download "visionsim" on your i-phone/i-pad and find the eye disease called "Retinitis Pigmentosa." That will bring up all the characteristics of my condition but you can also launch the simulator where you can play with the scroll bar and the tunnel will get bigger/smaller (and other things). It's been neat being in a room and showing Mary what I see! So you can play around with that (in a standard room with good lighting, scroll about 40% across the bottom and that's me). It's a neat app!
Monday, September 17, 2012
The Hearing Side
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
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
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.
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