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.

Locked Out, or is it Locked in?

 Approximately 12:15 in the morning I became trapped in my bathroom for two and a half hours.  After helping me onto the thrown, my personal assistant, Beth decided she needed to go and get something from her car.  As soon as my front door closed behind her, my heart started racing.  Did she make sure the door was unlocked?  I didn’t think so, because she had slipped outside way too fast.  Why didn’t I have her wait until I got out of the bathroom, I berated myself.   If I had Beth wait, I would have been in my wheelchair and therefore able to open the door for Beth.  Then I could get myself nicely into bed, where I desperately wanted to be!  Sure enough, after a short time she pounded on my front door saying  she had locked herself out!  This is not the first time Beth has locked herself out of my place; I would think she had learned a lesson! 

I spent two plus hours trying to talk myself into getting off the toilet, opening the bathroom door, and then knee walking to my front door to open it.  Up until my mid teens I knee walked everywhere at home.  I would hop down off chairs, recliners, and sofas, land on my knees, and go do whatever was on my mind.  It wasn’t enough to just knee walk, I felt the need to run on them 75% of the time.  Family members grimaced every time they saw me running, and they would warn me that I was going blow out a knee one day.  I just thought like many kids do, that I was invincible.   

Most of my pants were worn thread bare at the knees.  It is safe to say, that when I got into high school,  I did not think it was cool to have pants with thread bare knees.  I started spending more and more time in my wheelchairs, which I told myself I would never do.  On top of that, my knees began to deteriorate, so I really had no choice, but to use my wheelchair full time.    It has been at least twenty-three years since I have spent large amounts of time knee walking.   My knees ached just thinking about walking on them again! 

If I was really going to be the heroine of the night, I needed to do a couple things first.  I wanted to pull up my pants, because if I did work myself into jumping off the toilet, and fell flat on my stomach, I wasn’t about to be rescued with half  massed pants!  I pushed myself with my legs up into an arch above the toilet, and with only my right hand, I inched the pants up.  Having my pants up served a duel purpose.  One.  My bum was no longer cold!   And two, I had an extra padding around my knees.  However, I wanted a softer landing strip, so I pulled the rug in front of the toilet over to the side where I would land.  There still was maybe a foot of bare floor between the rug and door.  I didn’t like that, so I tried pulling the hand towel down.  I thought I could kneel on it, and sort of slide within reach of the door knob.  I could barely touch the bottom of the towel, but I couldn’t grasp it firmly enough to yank it down.   So, there I was afraid I would harm myself by doing something I did thousands of times as a kid!  It definitely sucks growing older sometimes!  

Meanwhile, Beth went to find my apartment manager, but could not arouse either of the two on-site managers.  My neighbor was still up, so Beth told her about our plight and asked if she might use her phone.     She tried to call anyone she  could think of to come help us, only two people responded, and they didn’t  know how to help!  She even tried calling 911, but they didn’t think in an emergency.  How did they know it wasn’t truly an emergency?  By that point I could have fallen off my thrown, and had broken a hip!  Instead, they advised her to call a locksmith, and that’s what she did.  The man wanted $175 dollars to open my door!  

 There is a new rule I am enforcing in my home.  My personal assistants can not go outside when I am in the bathroom.  If they absolutely have to go outside, they have to make sure to take the apartment key, and or make certain the door is unlocked!  I will train everyone on

Isn’t it incredible what people invent?

Check out the following link.

Maybe I need one of these helmets! I could simply think of what I want to type, and it would magically appear on the screen. Lately I have lots to write about but little to no energy to do the actual typing. I would most likely jamm the device up, because of my rumbling and tumbling thoughts.

Never mind! At second look, I would not like to wear the helmet! I like my hair to look nice whenever possible, and sweaty helmet hair is one of the worse looks in my opinion! If I could not communicate anyway else then I would adorn the helmet and be appreciative I had it.

Remembering Duke

Remember back in November, I wrote a post about my dog, Duke?  Well, here is just a few things that I miss about him. 

I miss Duke’s licks(kisses).  Sometimes I’d be busy at my computer, and he’d come in  to give me a kiss.  It  wouldn’t be until a little later that I would realize he had done so.    I would just smIle with the knowledge that I was loved, then I would try to remember to give him an extra long pat when I took a break!   

I miss Duke finishing the yucky end of bananas, or cleaning out the last bit of yogurt when I couldn’t eat it all.  Now I have to suffer through eating them all by myself.  Duke was my own personal  hoover vacuum!  He cleaned my floor while I ate.  Now I need to ask my personal assistants to sweep my floor after every meal. 

I miss  our walks!  I thought Duke  looked so majestic when he walked next to me.  I think he was conveying to the world, “Hey, look at me, I’m out walking with my lady, and I couldn’t be prouder!”   As we would pass fenced in yards, the dogs within would start barking at us.  Duke never barked back, if anything his grin became wider, and I think if he could he would have challenged the dogs to beg their humans to take them for walks, too!

I miss having Duke lay on my feet!  It was sure nice when my feet were icy, Duke was better than a heating pad!   I used to  think  of him like my big fluffy  pillow.  Well, at least his coat and skin were soft, but weighing at an average 75 to 90 pounds he was good at playing  an anchor, or  a huge bolder that frequently held me captive  in  boxed in places.   Like in my room, for instance. my desk is in front of me, my bed is in back of me, and a wall is to the right of me.   The only escape is a narrow path on the left of me.  If Duke decided to lay right in the middle of the said pathway, I was frankly trapped until he moved.    I finally  got smart and kept treats in reach, if he got up when I asked, he would be rewarded.   However, if he remained like a stone, I was simply S T U C K until at last Duke  remembered he was a dog and not a rock, and slowly stretched and got up, as if to say, “Okay, I am done ignoring you now!  What are we going to do now?  Walk, eat, how about a nice rump scratch? ”    I do not especially miss those times when I had to wait for her to move!

I miss Duke at my side when I have to open my front door!  I could at least imagine that the big red dog beside me was intimidating!  Duke would more likely lick a person to death rather attack someone, but I like to think he would protect me if there was any real threat.   His tail could whip someone really good!  Oh wait, it was me who usually got whipped by a happy tail!

When friends ask me if I have considered getting another dog, I am thinking how could I possibly find an awesome dog like Duke.  I doubt one exists!   It shocks me to no end when I hear my family ask me if I will get another dog.  They were not that keen of me getting Duke, but then he was just a puppy, and a male, at that.  I had my qualms, too!  Duke was not a perfect dog by  all means, but he was eager to please me more often than not, and that made all the difference!  Maybe my family figures I didn’t do so bad by Duke after all.   I highly doubt I will find myself getting another dog, if I do you, my wonderful readers will be the one of the  firsts to know!

Knowledge is power #2

Just because someone sits in a wheelchair does not mean they are also hard of hearing!

I was at the vets getting my cat updated on her vaccines. The veterinarian’s assistant came into the exam room to get Donka, and noticeably raised her voice when she talked to me.  Then my personal assistant asked her a question, and the veterinary assistant’s voice went back down to a normal octave. 

It was blatantly obvious, however until my personal assistant pointed it out to me, I was able to ignore it. I think I have grown accustomed to blowing off people’s flagrant misconceptions of me. It is not something that I consider worth getting myself all worked up about!  I figure if I am around people that have any misconceptions about me long enough, they will soon learn that I’m not hard of hearing, or simple minded.

The best advice that I can give you when you are not sure how to treat someone that’s obviously different from you, is to treat the person like you would want to be treated!  I believe that if everyone made treating people with respect an every day pratice, the world would be much more peaceful!  So, now that you know, act it out, and encourage other people to do the same!

This Blog Has A New Home

We moved my blog over here to  last week.  The new posts I write will still be fed onto OHSU’s blog page, however I have more freedom  to be creative over here.

I think you will notice some nice features.  I can dress up my psage so it will reflect my personality.  I am able event categories for the different topics that I write on.  It works, I have tested it out.  If you scroll a little down the page you will see the lists of categories on your right.  Just click on the category that interests you, and all the posts on that subject will appear.  Is that cool, or what!

You may notice that most of the posts are dated on the same day.  I am nowhere nearly that prolific with my writing.  It just reflects  the date the posts were transfered to this site.    You will find the true date each post was created right underneath the dateline.  At somepoint I may fix the dates, so you may hold off adding my blog to your personal blog reader.  If you have not heard of a blog reader, it was developed  for people who like reading multiple blogs.  Instead of visiting each blog site, you can set up a blog reader on most e-mail programs.  Whenever a new entry is posted it will show up in your reader.  It saves on checking on your favorite blog to see if it has been updated .  In my opinion, Google’s Reader is the easiest to set up. 

Another exciting fact about driving to is that now family, friends, and interested readers can now post comments so much easier here.  I will try hard to answer yourcomment in a timely fashion!

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.