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!
Friday, January 13, 2012
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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