Turtle Speed? Say What?

ImageImageThe image above me,  is that of a turtle. Do i look anything like a turtle?  No, i didn’t think so either .I was exiting a Lift bus when the driver said that I should have my power chair on “turtle”. Now I was paying attention to how I was driving onto the gangplank and not to her. When I stopped, I gave her a quizzical look. She said it was a new policy that Lift was trying to enforce on their riders to keep us safe.  When I still looked questioning she threw in that I had done nothing wrong.

When the lift reached the ground, she really wanted me on turtle speed. I tried it for 5.5 seconds, and I could not stand going so slow.  I turned my power chair up to a hungry turtle speed, and ignored her plea to go so slow. I had an appointment to get to, for goodness sake.

Either that driver was a control freak, or she had a bad experience with a passenger who had trouble driving their power chair.   No other driver has mentioned “the turtle policy” again, so I am sure it was a rouse to keep her “passengers” safe.

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Reliable transportation isn’t a given.

In my humble opinion, it is easier to live with a life long disability, then deal with the loss of a privilege!  Sure, I have dreamed of  my disability suddenly vanishing, and being able to walk and talk,  and lead a “normal” life.   

  A childhood fantasy of mine was while spending the weekend with my grandparents, I would suddenly start walking  on my own.  Grandpa and Grandma would create parallel bars with their linked hands and arms.  I would to try to walk between their arms.  Sometimes I would feel so strong on my feet, that I  was sure that it was only a matter of time before a miraculous healing occurred!   In my dream, I would simply break free from my Grandparents arms, and my body would be completely healed.  After the three of us finished our celebration, I’d beg to be taken home where I would leap out of the red pickup, and meet Mom halfway towards the house.  She would twirl me in her arms, smiling, happy tears springing to her eyes. 

 A few times I felt so strong,  I convincd myself  that the CP would disappear one day.  Numerous times I would  tell my physical therapist that I felt my CP was going away.  I guess she became tried of hearing my proclamation, because one day she said that my CP would never cure itself.  I never said my CP would heal itself, I meant that my Lord could send me another miracle. (The miracle of both Mom and I surviving my birth.)    I will hear His voice clearly one day!  He will say, “Jan get up and walk!”  And, hopefully I won’t hesitate a second!

 When I first moved into  Supported Living, I could ride in personal assistants cars as long as they had a valid drivers license, car insurance, and passed the agencies behind the wheel driving exam.  In fact, when I was looking for an apartment, I rode around in my program manager’s car.  it was  so easy to plan a grocery shopping excursion with a willing personal assistant.  All we had to do was jump in the car and go.  There was also that freedom of taking off for home as soon as movie ended! 

However, the agency which provides me with personal assistants, put an end to driving people whom they serve for insurance.  I can understand the companies reasoning behind making this policy.  They don’t want an employee  getting into an accident  while they have a person served in their car.  The client could sue the personal assistant, which in turn would fall upon the agency.  To be fair, the company didn’t leave me totally reliant on the bus system.   I  can reserve a company vehicle most week nights and weekends. Unless I know months ahead  of time, I am not able to use a vehicle during the day time, because all of the vehicles are being used.  If by chance I get permission to use during a day, I am aware that if  a vehicle breaks down before I get possession over the the car, I am left scrambling for another mode of transportation. 

Getting back to my topic of  not getting over the loss of a privilege.  When I got the call to get to the hospital asap, all I could think of is how easy it would have been to hop into my personal assistant’s vehicle, and getting to my family within the span of twenty minutes.  Instead, I had to catch the city bus.   My mind was racing with thoughts of,” Hold on Dad. I’m on my way.” While my personal assistant’s mind was focusing on where she could  get her  next smoking break. She took it while we were waiting to transfer to another bus. The driver came back from his break, started the bus, lowered the ramp, helped me board the bus, tied my wheelchair down, and than let the rest of the passengers on. The driver asked me if I had someone going with me. I nodded yes. I tried to envision in my mind’s eye whether or not I could  independently make it from the bus stop at the hospital, to inside the hospital. Seconds before the bus pulled away from the curb, my personal assistant jumped on the bus, relieving me of my needless worrying. 

   It would be nice if I could own my own car, pay for my own insurance and gas of course and just have a reliable assistant who could drive me wherever I desired to go, but that would be asking too much now wouldn’t it? Heck no! I think this is the least I could expect. One day someone will get it in their heads that we, the person’s served would really like to have the chance to show just how independent we really are.

Restocking My Cupboards; Entering a Madhouse

I want to end my trilogy to the winter blast of 2008.  I believe the following story will shed a lot of light into what it can be like when I go grocery shopping.  

The Saturday after Christmas, I had no food in my house.  So, I made a ride to go shopping.  I wanted to be at the store for two hours.  However, the bus picked me up late.  Adding to the time was the fact that both the driver and my personal assistant had to chip out a path before the power wheelchair could reach the bus!  

By the time I got there I  only had one hour before my ride to pick me up was due.  The recent bad weather drew everyone to the store that day.  It was a madhouse.  Getting things on my list was difficult because everyone was in my way.  At first, I bypassed all the heavily crowded isles, but time was ticking so I plunged into the masses.  People are aggressive when it comes to restocking their cupboards after being stuck at home by a winter storm, and the treat of another one hitting! 

It was amazing, people were walking in front of me, and cutting me off.  Hello!  Did they notice that I was driving a 200 pound power wheelchair?  I once took a class that taught me how to use the power chair as a weapon in case I ever needed to protect myself.  So, I know I could hurt someone if I ran into them.  Were the other shoppers in such a hurry that they were willing to get hit by a power chair?   Again, I am assuming they must think I’m a darn good driver.  Sometimes, I wonder what people are thinking when they step in of me! 

There were only a few more items left on my list, and I was beginning to relish the idea of escaping from the masses.  I was exiting an isle when a high school friend and her husband approached me.   At this point I had twenty minutes left before the half hour waiting time for my ride home started.  Of course, she wanted to talk a bit.  Why is it that whenever I don’t have time that is when people want to chat.  I like and need more than just a few minutes to talk with my friends, because communicating with my communication device can take a  lot of time!    When we finished the conversation I had about ten minutes left. lot

I got the last essential things, and was waiting in line to pay for the groceries; when I  heard my name being paged. I have a theory!  I suspect the the bus service has me hooked up to a GPS which monitors my sweat glands.  If I’m sweating profusely, dispatch notifies the drivers to pick me up right away.  If I am as cool as a cucumber, that’s when dispatch will tell the drivers to take their time in getting to me!  (Of course, they don’t really do that, but from time to time it sure feels like what they are doing!) 

I had my personal assistant go talk to the bus driver.  When she got back she said the driver would go around the block and then wait 5 minutes.  My body went rigid, and bang, I instantly got a nasty  headache.  I didn’t know if I should stay in line or abandon my cart.  I could have asked a clerk to put the cart into cold storage, and had one of my sisters pay for the groceries later.  I decided to stay in line, and risk losing my immediate ride home.  

When the driver came back he saw that I was paying for my groceries.  I saw an attitude change in him when he saw me. He was kind and waited for me after all.  I didnt have to wait 2 or 3 hours for another ride home, however the headache remained for the rest of the day.

Definitely Not My Most Charming Moment

8/20/2008

It wasn’t my most brilliant moment!  I am positive I looked like a crazy woman!  I  had arranged three rides on Lift this past Monday.  I normally stay away from a three designation trip, but sometimes I have to do what I need to do, and a few errands of mine needed to be handled. 

 

First, I went to the bank.  Then I went to the mall, because I needed to put more minutes on the cell phone.  When I was all finished, I planned to wheel to a grocery store, which was approximately two long blocks away.  It took longer then I expected to get my phone problems settled.  Then I let my personal assistant go and pick out a card, because I’m so nice! 

 

By this  time it was just after two.  The fact was a bit alarming to me, because I wanted to be at the grocery store shopping at three.  I was ravenously hungry.  If you have ever been ravenous when shopping; you know that the combo is lethal on the food bill!  I had to eat something before getting to the store!  Now I am not  the fastest eater, but I managed to gobble down a crispy bean burrito, and mexican fries, and a drink in record time.  When I was done eating it was about 3:20.

 

Now I start panicking, because my ride home was scheduled between 4:30 and 5:00.  Making matters worse,   I had never tried walking to this particular store before, but I figured it could be done.  It was an easy walk, but it took longer then I thought it should.  When we reached the grocery store it was 4:15. 

 

I considered just waiting outside the grocery store for the bus to arrive a split second, then rushed inside.  The bus could either be right on time, or 45 minutes away.   I wasn’t about going to wait around for 45 minutes, and wished I had taken the time to at least grabbed something for dinner.  My personal assistant and I went into high gear and started a fifteen minute supermarket sweep dash.  I am quite impressed with our accomplishment.  We grabbed only things on my list, and I didn’t run anyone over while doing it!  

 

I had just finished paying for the groceries, and the personal assistant was bagging the things up, when a  bus driver approached us.  He asked Margo if I was Jan Staehely.  Instantly my body went rigid, and was giving off some body language all it’s own.  My communication device was low on it’s battery, so with my own voice, I tried telling him that he could talk to me directly, but he just looked back at Margo and asked her what was wrong with me.  She told him that I wanted him to talk right to me, and not assume she and I were together.  He just said, “Oh!”  Then to me he said, “Shall we go get on the bus.  I said, “Sure!” 

 

I took off like a bolt of lightning.  I was irritated with the bus driver.  When I reached the bus about 10.06 seconds before he did, (Excuse me, I have been watching the Olympics!  Isn’t Phelps amazing!)  There was a bicyclist parking his bike at a bike pole.  The bike pole just happened to be right in front of of where the wheelchair lift would have come down.  The bicyclist ran inside the store before the driver realized what had happened.  I just had to snicker a little bit to myself, because the driver had to move   the bus enough to let the lift down. 

 

As soon as I entered the vehicle, I understood the driver’s motivation.  There were two other passengers already on the bus.  He thought he would shave off a few seconds by asking my personal assistant my name, help motivate me to get out to the bus, so that he could get back to his other passengers.   I guess his plan backfired on him!   I totally understood his need to get back to the bus, however I wish he would have addressed me straight from the beginning. 

 

It is my humble belief that most everyone knows their name, and can simply nod or  shake  their head to indicate yes or no  The  real issue is patience on the listener’s end!  If there is the slight pause, say five to ten seconds, the listener tends to sweat and wonder what they should do.  In reality, it may take me about fifteen to twenty-five seconds to think how to say something, and then another fifteen to thirty seconds to reply.   I just wish that everyone would treat people with disabilities the very same way they would like to be talked to! 

Posted at 9:37 AM by useuraac@yahoo.com

A Mind Changing Event

7/16/2008

When the Oregon Health and Sciences University Tram was being built I vowed never to ride the thing! Somehow dangling in a gondola from a string suspended over several freeways, homes, and lots of height did not appeal to me! For ten months I managed to avoid using the Tram, even though I work at OHSU and I can ride it for free.

My excuse was I did not know where the Tram would drop me off once I reached the top of the Hill, and how I would find my way to my office. This was a poor reasob for me to give, because anyone who knows me knows that one of my talents is figuring out where I am, and how to get from one point to another. I just have this radar in me that most of the time tells me where I am.  I love to astound people by helping them to find some place when they are lost!

I was given a work assignment to test a new communication device. It has a sensor that switches the vocabulary on the device whenever the device goes through an entrance of selected establishments. The device will automatically bring up a menu, or other vocabulary someone might use to speed up communications. While I was testing the prototype on unsuspecting vendors around the campus of OHSU, I discovered where the Tram platform is located.

After that, I knew I had to at least try riding the Tram once. Finally, I had Tri-Met Lift drop me off at the new clinic building that is next to the Tram at the bottom of the hill, and took the gondola up! It was absolutely too easy to board, ride and disembark from the Tram. The conductor will tell riders when to expect the gondola to sway. At times like those, I am grateful for my power chair! I soared triumphantly off of the Tram that day knowing I had overcome a roadblock!

Riding the Tram has some added bonuses.  I am doing my part by saving fuel. The Tram saves my body from the added stress of going around those Twilliger curves on a bus!  Sometimes the way drivers zoom around the curves, I feel as if I just raced in a marathon!  Who wants to work right after finishing an endurance race?   I also enjoy making my way thrugh the halls and buildings across the OHSU campus to reach my office.

Now I always make the Tram apart of my commute  to work.  However, I never thought to consider how my personal assistants might feel about riding the gondola.   Some people are just naturally petrified of heights, and several personal assistants have refused to help me at work, because theres no way they could ride the Tram.    Of course, I try not to make my personal assistants do something that is genuinely fearful for them.

 Except  for Anne!  She told me she was afraid of heights, however, she was willing to accompany me work one day.  She held on to my power chair for dear life, while I talked to her,  and reminded her to breathe from time to time!  Anne’s courage impressed me!   

Sometimes we put off doing activities that we perceive as too frightening or not all that beneficial to us. If you are postponing some adventurous event that you find daunting, pray about it.  Perhaps ask a friend to go with you; make a fun day out of it. You will be amazed by how much strength you have once you make your mind up to do the thing you thought you would never try!   

Posted at 2:01 PM by useuraac@yahoo.com

A Moment In Time

6/18/2008

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