A Moment In Time


I had an unbelievable bus ride one beautiful crisp day this past January.   Earlier that morning I had taken the door-to-door lift bus to downtown.  I met a friend to see a movie.  I was unsure how much time she had to give me, so I planned on taking the city bus home.  It was my last chance to spend time with Sanne before she left for her home in Germany.  If she had five hours to hang out with me, which she did, I wasn’t about to tell her, “Oh darn, Sanne, I can’t stay that long, because I have a ride taking me home in three hours.”

Needless to say, that when I started my treck home, I was expecting a nice quiet bus ride home while I took a few minutes to wallow in the grief of not being able to see Sanne in person for a long time!  The bus pulled up to the stop, and I prepared to get on. 

There was a man sitting in the accessible seating with his leg in a splint. I heard the bus driver tell him he should get up while I parked.   The man accepted the advice.   Parking a power chair on a public city bus is no easy task  Sometimes people just will not give me the room I need to get turned around and safely park.  I figure they think if I am driving, I must know what I am doing.  If that’s the case, then I like their logic.  However,  there are other times in which my fellow passengers can not run out of my way fast enough.  When they run like that I know they probably have been ran over by someone driving a power chair.  I try not to let it bother me, I guess I would stay clear of power chairs, too if I had been run over by one once.  However, sometimes I feel like pointing out that not everyone who drives a power chair should be judged  as  a bad driver!  

After I was settled on the bus for a nice long ride home, I was ready to do some reflecting on the day. However, I never got the chance because the guy with the splint started talking to me. He asked me about my communication device. He understood immediately that the Pathfinder is meant to help communication flow. HALLELUJAH! You would be shocked to find out that many people think the box which is usually in front of me, is some game board.

After that the man kept peppering me with questions. He was patient with me while I composed my answers. It was a full bus, so there was another man standing beside me. This guy was reading over my shoulder and trying to predict what word I would type next. I wanted to tell him that was a very juvenile thing to do, but I held my tongue. When there was a lull in the questioning, I decided to question the man grilling me. I asked him his name. His told me it is Darrell. The man standing piped up and said that was his name as well. They both discussed it, and discovered that they are spelled the same way.

I went on to ask the number one Darrell what he did for work. He said he worked in an adult care home. I asked him what he did for fun. Darrell said he liked playing computer games. He asked me if I had any pets. I said I had a dog and cat. I inquired if he had any pets. He said he had a cat and its name was Snookems. Darrell number two’s mouth fell open, and he announced that was his first cat’s name. He went on to state that if Darrell number one got off at the same bus stop he did,  it would cause him a sense of alarm. Everyone within hearing distance cracked up laughing.

Before the two discovered they had cats with the same name, I was in the process of telling a little story about Donka. I was typing, “I have a window above my bed. In the morning my cat has gotten up there, and she has –-“.  ” I had stopped to listen to the two Darrells converse, and was laughing with the others, when I heard someone say, “and she has?” There was another man sitting in the accessible seat directly in front of me. I had seen him reading over the top of the Pathfinder’s screen as I typed. I looked at him quizzically for a second, he looked at the screen, then I looked at the screen, and I realized that he wanted me to finish telling my story. Wow, some perfect stranger wanted to hear the rest of my story!

Since I didn’t know how long any of the people were going to be on the bus, I decided to keep my story brief. I quickly went to work typing on the Pathfinder. I simply stated, “pounces on my head.” If time was not such a factor on this fleeting bus ride, I would have loved to have beefed the story up by adding. “When Donka was finished surveying the scene outside, she will pounce on my head if I am not awake enough to hear her soft meow and roll over so she can land on my pillow instead of my head.” Now those guys probably think I don’t know how to tell a good story!

I loved being apart of this spontaneous bus conversation! It was a rare opportunity and treat to find myself immersed in a three-way exchange. Normally I just stick to one on one chats with another person, because it’s hard to join the flow of a group discussion. I can not blurt out my thoughts like most people.   Instead I have to break eye contact and type my comments on to my communication device so that it can translate for me. By the time I finish typing my thoughts, normally the conversation has zoomed on to a different topic.  A lot of the time, I will let my thoughts go unheard.  However, I’m starting to back people up a bit, and say I would like to make a comment about such and such, then say my piece.  People are genuinely happy when I speak up!   

My fellow bus mates and I have been blessed that we have connected on a level higher than “Hello!” Another prayer of mine had been answered,. Three more people and a handful of eavesdroppers know that my communication device works, and maybe they will spread the knowledge around.

Posted at 2:33 PM by useuraac@yahoo.com

Leaky Water Heater



Have you ever been on the cusp of starting a new venture in your life, and things start happening that delay the project from beginning?   Well, that’s what happened to me!  I have been asked to start a blog through my work, at Oregon Health and Sciences University(OhSU).  I am going to be writing about my unique life. Plus, monitoring other blogs, and eventually hosting on-line chats.   I thought cool, I love to write, especially what I know best, myself!   This is something that I can totally take on and fly with. 


I had no idea when I was being offered this incredible opportunity that my life outside of work was going to resemble a rollercoaster ride.  If you have not read my previous blog entries, they  will help you understand that the craziness did not begin with the water heater!  


My sister first found the problem on a Sunday morning, when she stepped into my pantry to grab something.  I heard her mumbling something that I had a problem, but it didn’t register in my brain until I was fully alert!  I had a leaky something!  We both figured it had to be the water heater!


It was not a gushing river leak, it was the kind of irritant  leak that you clean up and a few hours later you would have to sop up again.  The landlord was called, the soonest the maintenance man could come was the next morning.  Why does it seem like everything breaks down on Sundays.  Well, I guess  since Sunday’s are meant for rest, everything should be able to kick back,  even water heaters!   


On Monday, when the maintenance man  came, he asked me if I was absolutely positive that the leak was coming from the water heater.  I said no that I wasn’t sure.  It was stupid of me to say that, because after a quick assessment of feeling the dry tray underneath the water heater, he proclaimed the problem was my washer.  My just barely two year old washer.  I estimated the water heater to be around thirty years old.  You do the math!


On Tuesday the maintenance dude was called back to my apartment twice.   A different personal assistant  delt with the man, I “accidentally” forgot to mention  that he had already confidently placed the blame on the washer.  My brilliant plan backfired: he didn’t reconsider his diagnosis.   He told her that I needed to get a repairman to fix it.  However, he graciously helped her to clean up the mess.  Three hours later she had him come back to shut the water off from the washer, and completely disconnect all the hoses and unplug it  from the electricity. 


Then I had my brother come and haul the then dent free washer away.  I heard Paul outside trying to be a muscle man and heft the washer on to his pickup alone.  He sure made an awful bang, crash, banging racket for a good twenty minutes!  I felt so bad for him, because he had no one to help him.  I wanted to run out and help, but of course, I couldn’t. The washer will forever bear the battle scars from the water  heater bungle. 


Surprise!  Even though the washer had been removed from my apartment, the problem hadn’t gone away!  Wednesday morning I found, not only my pantry floor soaked again, but the water had seeped underneath a wall and saturated the rug in my hallway!   This time when the maintenance dude came, he had no choice but to admit the problem was with the water heater!  I felt so vindicated!  Still the management hemmed and hawwed over whether or not they needed to give me a new water heater.  Can you believe that? 


Next came three days of repair work to my apartment.  The first repairman was a plumber.  He took only seconds to locate the leak  and fix it.  The problem was a  hose on top of the water heater, which was trickling down behind it; completely bypassing the trustworthy tray!  See, not even water heaters can break the way they are suppose to.  That is the coolest thing about life; nothing is ever as predictable as we think it should be!     


I was looking forward to Thursday! I had a meeting scheduled with Rob, my supervisor; he was going to train me to use the program that I am composing my blog on. However, I needed to cancel the training session, because someone had to be here to let the repairmen in whenever they decided to show up! It is needless to say that I was not happy giving up the two days I had things planned; the day before I could not  attend my writing group for the “two second” plumber! There is an upside to this hassle, I got a new water heater. I now have luxurious and constantly hot showers!


I was starting to get a bad cough while the mayhem was happening in my home.  It was a deep chest cough.  You know, the cough where you wonder if you might throw up a lung!  By that weekend, I was feeling absolutely miserable!  I am glad I made a doctors appointment for the following Tuesday, because by then I was coughing so constantly, I was physically  exhausted.   I only wanted to sleep, but I couldn’t get much rest.  The doctor gave me medication to combat bronchitis.  Although the doctor said I would be feeling better by that Thursday, it took me nearly a week longer to recover and stop having the wretched coughing fits.  Which was okay, because by then Rob had become sick as well!  He tried pinning the blame on me for his illness.  However, the last  I knew you can’t spread human viruses via e-mail. 


Finally, we were both well enough to meet in  person.  The morning we were going to meet, I got out of bed and turned on my monitor.  The computer was already on; I use it as white noise to drown out my noisy neighbors.  The monitor stayed a blank screen even after I moved the mouse around, which in my morning state of mind was not a good start to the day!  No matter how much I jiggled and wiggled the mouse around, the screen remained midnight black, even though the on switch was lit up. 


I immediately thought, oh great, now my monitor is throwing up another roadblock to my new job!  I can’t afford to buy a new screen!  I did the only thing I could think of: I rebooted the computer from the tower.  I did not get the outcome I was looking for!  On a whim,  I had my personal assistant flick off and on the power strip to my computer and monitor.  I know that’s a big no no, but I didn’t see any other options.  It worked!  The screen flashed brightly on.  I was back in business, or so I thought. 


The strangest thing started happening next. When I went to type, a random gobbledygook mess appeared. No matter what I tried doing, I couldn’t gain control of my computer. You need to see the whole picture to understand what was happening. I am not using a regular computer keyboard to type this blog, instead I use my communication device. It works through an inferred system. It is placed in front of my computer, and then I can type whole words or phrases by hitting one, two or three keys at a time.  The words then magically appear on my computer monitor via an inferred transmitting box. Since I have started using my communication device as my keyboard, I rarely use the regular board! Who could blame me? When I used the standard keyboard it would take me all day to type three or four paragraphs, whereas I can compose a page in about two hours, when I am in the writing zone! 


So, getting back to my malfunctioning equipment. On that early morning, I did not have time to figure out the problem. My ride to work was due in an hour, and I wanted to eat breakfast before I left. After all the failed attempts at meeting, I just wanted to send Rob a quick e-mail to say that I had managed to get a ride to work, and when I would be there. Finally I pushed my Augmentative and Assistive Communication  (AAC) device aside, and used the medieval standard keypad.   Saving me some precious minutes, in ALL CAPS I typed:


In e-mail terminology to use all caps, means you are shouting at the person receiving the e-mail. I made sure to explain the situation to Rob. Thankfully, he understood my frustrating morning!  I am happy to report that the rest of our meeting went well, of course it did, since I have just finished my third post!

Posted at 4:10 PM by useuraac@yahoo.com