The Commute: 03/30/10

Long time no blog update right?  Sorry.  Just nothing to tell.  My trainer's schedule is usually busy.  One day we had tentatively set, we both forgot by the time it arrived.  The next week Jennifer took vacation.  All of this and a lot of rain have led to it being a month between lessons.  So we finally agreed on last Tuesday, 03/30/10.  Before I even met her that day trouble tried to inch its way into my plans.


I was at work, engulfed in my research, yet thinking I wanted to have things better prepared so I did not waste a moments time driving today.  I made sure my bioptics were in working order and clean of dust.  I kept looking at the clock consistently making sure to try and get downstairs a little earlier then my 12:00 appointment.  I made sure to put my contacts on, instead of wearing eye glasses.  I looked at my phone to ensure it was charged and checked for missed calls.  Despite all these efforts a sudden streak of terror ran through my mind.  I realized I left my wallet at home with my drivers permit in it.  I couldn't drive today.  I thought about just not telling Jennifer I left my permit at home.  The repercussions of that lie far outweighed the benefits.  If I wrecked that car with no permit on my person, I may never have a chance to drive again.   I couldn't believe this.  I was going to have to call Jennifer 30 minutes before my oh so belated appointment and tell her that I couldn't go today because of my carelessness!  I sat thinking about calling her and suddenly remembered something.  The day before, I put my wallet in my lunchbox because my pants pockets were so small and shallow.  Could it still be in there?  I swirled my rolling chair around to my lunchbox as fast as I could.  Like a mad man looking for treasure I snatched my lunchbox up off my desk.  Then I glanced into the side zipper pocket.  There sat my wallet with my permit and everything else in tact.  Whew...I did not have to cancel after all.  Shortly thereafter Jennifer called and said she was outside.  She still beat her own appointment time, so I wasn't downstairs yet.  I wanted to do this during my lunch break today so I did not have to take time off work.


Jennifer jumped out of the car after she saw me and got in the passenger seat.  I was a little shocked she was going to make me drive downtown again at the beginning of this trip.  Today, unlike my first drive, was a extremely bright sunny day.  Translation: it was hellacious for me to see outside.  However with the red filters. things really were better, just not as good as a cloudy day would have provided.  I hopped in and remembered to put my seatbelt on, to turn the mirrors so I could see and to put the dark blanket on the dash.  I had memorized the gear order.  I put my left foot back so I would not be tempted to use it at all.  Jennifer was not satisfied with my right leg angle to the break and gas pedals.  She watched me move up closer to the wheel till she was satisfied.  According to the wikiHow website your leg should be at a 120 degree angle when driving.  After Jennifer got done texting, I shifted gears to roll out to the main street.  I had to ask her which way to go.


As soon as I had that out of my mouth she reminded me to turn my blinker on.  I did it wrong.  Those poor confused drivers behind me.  lol  I struggled with remembering if pushing it up was for the left or down was for the right or the opposite.  I need a rhyme to remember them by or something stupid that will stick.  If you have any suggestions please let me know.  We hit the main road and she reminded me of the one way streets.  I made the turn but Jenn held the wheel some to ensure I would not turn into anyone else's lane.  I was doing good seeing the red lights for the most part.  Seeing the stop signs with the red filters proved to be a challenge.  Lucky for me, this particular road showed the word "STOP" painted on the ground which proved most helpful.  Regardless, I was still very observant before crossing ANY street.  Jennifer ended up telling me she was training 5 people.  I''m sitting here wondering how in the world that utilized all of her day unless they are doing much more training then I am.  Anyways, before I knew it we were.....well....'Where are we?"  I laughed out loud.  I was SO busy concentrating on staying in my lane, seeing red and green lights, doing lane changes, turning on the correct blinker, hitting the gas very lightly, and listening to Jennifer's instructions....that I had NO CLUE where we were.  After she told me, I began to pay attention to my surroundings more and figured it out.  We came the back way to my house.  This involved some extremely curvy streets.  I was so excited.  I told her one thing I was thinking.  It seemed much easier for me to stay in my lane then I ever thought it would be.  That was a big difference from what I assumed while observing others drive and actually driving myself.  I always thought it looked so daunting to have to keep moving that wheel left and right.  But it became no biggie for me personally.  Jennifer immediately exclaimed she was glad I was so good at it because she recently had a nightmare about one of her other pupils who veers into other lanes much too often.  Can you imagine how many nightmares you'd have about driving if you took legally blind people out on the road daily?  She's definitely got nerves of steel.  Maybe her keen ability to listen to PRM radio nonstop enhanced that gift.  


Well before I knew it we were coming toward my apartments!  Wow, I had driven myself home.  She instructed me to park and I couldn't even see the lines at all.  They desperately need repainting.  Regardless,  I was lucky enough to pull in to her satisfaction.  Ok, now time to back out.  I started backing out, but turned and looked first.  I was starting to turn the wheel toward where I wanted the car to curve out, but she stopped me.  I was told to pull out straight and then when almost all the way in the street to start to curve the car back.  That seemed easy enough, but there were no cars around to hit either.  I managed to shift the gears correctly back to drive.  Now we were off to work again.  Then the shocker came.


She told me to take the "expressway" back.  OK I barely was comfortable going 30, taking the expressway.....was she crazy!???  It was good to get this experience because near my home there's this really crazy intersection where about 6 streets all meet in one location.  Oh yes, I'm lucky enough to get to navigate that mess every day.  First of all, the traffic was really busy and I had to get the guts up to dart out in front of traffic after being sure I had the all clear in both directions.  There was no light at this juncture.  I did dart out fast...too fast.  Had she not grabbed the wheel I could have darted straight into the ditch.  So onto the expressway we crept.  I approached this huge curve where you merge into expressway traffic.  My foot instinctively let off the gas as I turned the curve.  She told me not to because I had to be moving fast on the freeway.  Ok, be careful what you wish for.  


Before I knew it she had grabbed the wheel acting as my eyes helping me change lanes.  It did seem a little much and she said we'd focus on lane changes later, but for now she'd do all that.  I was kind of in shock at this point because as I glanced to my right I could FEEL this 18 wheeler on the side of us and another car on the left.  I was wedged in.  This all seemed so unreal...even more unreal I WAS THE ONE driving!  I tried my best to keep focused before someone honked because I was going so slow.  We let one person around me.  Then we found a quick route to work.  We did a huge U turn by the hospital and went straight there.  The traffic lights downtown are sideways.  I never seem to see the ones hung sideways going home, just coming to work.  I accidently told Jenn the wrong street my workplace was on.  I keep getting it mixed up because we changed locations recently.  So then some pedestrians cross in front of me.  Crisis avoided, lucky fools.  Then I noticed something else.  The light was green, BUT if I did not stop I was going to hit the car in front of me who had his brake lights on.  I don't know why he had them on.  I think because traffic in front of him moved slowly through the green light.  This made me think that it's more important to look at the car in front of you then the traffic light.  After all the light won't kill you, the cars will.  


We took a right on red and dodged a vendors truck before swerving into my workplace's drop-off area.  I was running late and cut our appointment shorter than Jennifer planned.  She hopped out and agreed to meet me in the coming weeks for more training.  She seemed more comfortable this time.  Hopefully we're building some trust in each other.  My feet hurt after this.  I think I didn't know how to properly rest them WHILE driving.  If you have any tips on this please let me know.  All in all, it was a great trip and as always I learned a lot.  I'm going to need to improve on my blinker knowledge, backing up, and parking abilities before the next drive.  Hopefully I can meet with my boss soon to iron out a driving schedule that can be consistent, yet work for all parties involved.  I'll keep you posted on those developments.   

Confusion Causeway

I got a surprise message on my machine yesterday morning.

Here's some back story:

I was trying to get my red filters ordered by my driving specialist, but after months of being distracted by my new job training, we lost contact. Upon being recontacted this month, she referred me to a occupational therapist to order the filters. The occupational therapist seemed somewhat out of the loop, but said she'd take care of it. After not hearing from anyone in over a week, I was planning to call back the occupational therapist on Sept 29th. Instead, I got a message on my machine from Dr. DeCarlo.

She told me they have no red filters ordered! Now keep in mind, she has my chart and can see how insane it is there has been such little progression since my last visit with her in June! She said now that she's aware of what's going on, they have placed an order for some. Due to the confusion, I was asked to contact her directly concerning these matters. Another potential problem is they are having a hard time contacting the person helping me pay for things at vocational rehabilitation, as he's on extended sick leave. (I wondered why he never returned my email last week.) Dr. DeCarlo gave me her personal number if I had other questions. Of course, I did. I wanted a time frame. I was shocked I actually reached her on my first call attempt. That was a miracle all on its own. She explained that it would take one to three weeks for the red filter order to be filled. She ended up apologizing for the people I was trying to work with pointing me different directions. I told her it was not a big deal because a few extra months of waiting compared to 31 years of not driving was nothing. I was also told they plan to keep a pair in office so people don't have to wait on delivery to be filled. I thought that was a smart idea. I explained I'd be happy to pay for them if that meant things going faster. She said we'd wait and see how long it takes and maybe my vocational rehabilitation counselor will be back in office by then.

What a bunch of confusion over something that should have been simple. That is life. I accept it. (see photo above) I finally feel progress is happening again. Let's hope the filters come soon. They still have to cut them before I can test drive/spot with them. Then if all that goes well I can start trying to get my permit!

My New Diagnosis: Cone Dystrophy: 04/30/09

I was not on pins and needles too long before Dr De Carlo called me with the Electroretinogram results. I got a voicemail saying she could not leave this information on the phone and must reach me directly to discuss my case. I understood her ethics but lamented some about the phone tag. I got off work and still no call. I sat waiting on the bus while staring at my phone as if that would help it ring. I checked the volume because I mute it out of habit at work. I checked the battery. I checked the voicemail. Finally at the very late end to my doctor's exhausting work day I got the call! My bus still had not arrived so I talked to her with quiet enthusiasm in my employer's lobby.

She told me I have what she suspected: Cone Dystrophy

Dr De Carlo stated by doing this electroretinogram test we ruled out the possibility of other optical diagnosis. I asked her several questions about the symptoms. It all added up! I have light sensitivity problems during daylight hours, I can see well at night, I have color blindness, and I have problems seeing fine details. She was so professional and kind. She assured me that the diagnosis itself would not hinder my pursuit to be a bioptic driver. I was relived. The thought had actually never crossed my mind. I never once thought she may find something that will inhibit my ability to try bioptic driving. She went on to tell me that cone dystrophy can be genetic. She said that more family background may help shed light on this issue. She said there's no cure at this time as it's all a brain centered problem. But, with more advanced genetic research there is hope.

Another thing I learned during our conversation was that if it was inherited there is a 50 percent chance I will pass this on to my children. Scary.....I never EVER thought about this...I know I want kids, but would this prevent me from having any with my DNA? The short answer is NO. I believe in God before science. Plus, if I can do this, I'd have no problems teaching my kids to deal with it. Science is good, God is greater. He has a plan for each and every one of us from conception to infinity. If He want's me to have a child I will.

If you remember, in the previous blog about my "2nd Passenger Evaluation," I said that my only hope is to see if my doctor can give me tools to see red lights better in the daylight hours. I also stated that Dr. De Carlo's office had no appointment till June 18th. We touched on this subject and she graciously and sincerely apologized for the long wait to see her again. I told her it's no big deal, I've waited 30 years to do this, what's a few more months of waiting going to matter? haha So the waiting begins......again.....for the next exam and my last hope of continuing this dream. I pray it is not the end.

BY THE WAY:

If you want to learn more about what Cone Dystrophy is check out this link: Cone Dystrophy

2nd Passenger Evaluation: 04/24/09 I'm Crushed

My neighbor and friends have been working a lot with me this past week to prepare me for today. I still don't think I'm an ideal bioptic user, but I should pass. Today Jennifer was kind enough to arrange to pick me up form work with another one of her pupils. This Friday was a bright sunshine filled day. I hurried to get downstairs from work to meet Jennifer at the curb of my workplace. She called my cell and said one of the girls she was training had put her a little behind and someone was lost in her building. I told her no problem, I had no choice but to wait. :) After about 10 minutes she arrived. I had no idea what vehicle she was in. I forgot to ask. When she finally arrived she rolled down the window and said my name as I cautiously approached the van.

She was joking and called the van her new soccer mom mini van. Apparently, her employer had just given it to her to use for testing. Jenn introduced me to the teenage driver she was working with. Jennifer mostly talked and had a few cell phone distractions. It was obviously not a ideal day for her to do this test. She did ask me to spot a few things here and there. At one point we braked and she asked me if the car in front of us had blinking lights on or not. I had no clue, it was very bright and the bright light makes red light very hard to see. I can only see red perfectly at dusk or night. We tried a few other vehicles. No luck. With that, she was starting to get a negative tone with me about my driving prospects. I had mentioned moving to Oregon, and she said her sister lived there and I'd be a much better off there. That really did not make me happy, but she meant to be encouraging. I realized that, but this is NOT what I wanted to hear today! I was at my house before I could blink an eye. She apologized for not having enough time to test me more in depth today. I had to prompt her for information at the end of our trip. She told me what to work on and then gave me a little hope.

Jennifer explained that Dr. De Carlo has some options for users with problems seeing red lights. She mentioned some contacts and filters. She then told me that I should not contact her until I've seen Dr. De Carlo again for assistance correcting these problems. With that she was off, and I was left home alone on a early Friday afternoon to do nothing but ponder this unfortunate turn of events. I was CRUSHED!!! And the news gets worse from there. Monday I called the doctors office to setup this appointment Jennifer required. I was told by the secretary that it would be almost 2 months before I could see Dr. De Carlo again due to her extensive research and limited patient schedule! I took the next appointment: June 18th. This really sucks. I think it could be the end. Me going back to the doctor at Jennifer's request, sounds like a last straw effort. I'm in shock and frustrated beyond belief. I'm seeing red now...because I'm so mad, too bad I still can't see the red stop lights that well. I knew this may happen, I just don't want it to be over.