How I live with extra arms and legs

I have been living in the same  apartment for the last fifteen years.  Since I physically need assistance to get through my daily life, I hire live-ins or roommates.  So far, I have had nine roommates during  those fifteen years.  I think that is a fairly good average. 


Some of my roommates have stayed just a short time, like eight months to a year.  While other live-ins have stayed two or three years.   Of course, I did not want to see most of these women go!  While other times, I couldn’t wait to shut my front door behind them! 


This may sound bizarre, but even if they were the worst live-in, whenever any of my live-ins   decide to move on with their lives, I feel like my arms and legs are amputated when they leave.  This is because my personal assistants have literally  become my arms, legs, and sometimes my voice.  I have been with these people for a time, and I have trained them to help me in certain ways.  So, when they leave a big hole is left for someone else to fill. It takes lots of time for gap to close. again.   When new personal assistants come; I am not just working with them to understand me, I work extra hard at communicating my wants, needs and preferences, until they become second nature to them.   Slowly,  as the new personal assistants gain my trust, my limbs grow back. 


 I have been without a live-in for about fifteen months now.   I think the longest I have gone without one is just short of two years.  Live-ins are not easy to find, because they have to give up a lot of their time just to help me live my life!  A regular live-in shift starts at 5:00pm and ends at 8:00am.  I am suppose to have a day time worker from 8:00am to 4:00pm.  Then the live-in person works three weekends a month.   I know that these hours are a huge sacrifice for anyone, and so I am grateful whenever someone even considers  taking the job.  


What happens when you do not have a live-in?  That’s a very good question!  Usually I get people who are on-call.  These are women who usually  have worked with me before.  I much prefer it this way, because naturally my day goes a lot smoother!  It is no fun opening my door to a perfect stranger, and knowing I have to train them to  work with me on my own, However, once in a blue moon, it does happen.  On days like those, I know nothing I have planned on doing that day will get accomplished except for basic things like eating and using the bathroom.  Keep in mind these people are perfect strangers to me, I like to have them within eyesight of me, because I do not want them looking through my things and taking stuff!  So, what happens is I talk to them the whole day using my communication device, and get to know them really well!  At the end of the long day like what I have just described, I fall into bed totally exhausted! 


The hardest thing about having on-call people working for me is that the schedule of who is working when is constantly changing.  I will go to open my door thinking I am going to see a certain person, but a totally different person stands in front of me.  I try to act pleased to see the unsuspecting personal assistant,  and then I readjust my  day according.  You know, there are some things I want only certain people to do for various reasons, mostly trust.  However, some people have better skills than others.  For instance, would you let anyone help you with your finances?  Of course not!   Now maybe you can understand why and I am disappointed when that certain person I am counting on is not the one  I let into my home!  However, I try to make the best of the day! 


On rare occasions no one will show up for the next shift.  Sometimes I let the person getting off work go early.  If the next personal assistant does not show up in a half hour, I go through the process of calling for help.  I call my sister, because she understands me the best.  Next  Carol will call the manager over Support Living, and tells them what is happening.  About fifteen to twenty minutes later, the manager will call me, and tell me what happened to my personal assistant, and what to expect  next.  Usually someone is here within the hour.


The last time nobody showed up was two months ago, and the reason for it, was that no one was scheduled.  I think that was the first that has happened!  My night personal assistant was asked if could stay until ten, however she could only stay until 9:30.  I made sure she helped me to the bathroom, get dressed, and to eat a little breakfast before she left.  The next time someone showed up at my door was at 1:30.  I can be alone for three hour, but anything over that is pushing the limits. 


There were two people at my door when I opened it.  This could only mean one thing, I was going to be introduced to someone new, and soon be left with her.  My first mission was to use the the restroom!    After that the new person was given a quick tour of my home, and a few training instructions.  We  were left to fend for ourselves. 


My second order of business was to eat; I was starving!  I thought there couldn’t be anything easier to fix then Cambell’s Tomato soup, and grilled cheese.  The woman didn’t know how to open a can of soup, much less then prepare it!  Don’t let me start  describing the grilled cheese disaster. 


I snapped!  I was tired of not having up-to-date schedules of who would be here and when.  I was tired of not being able to do the things I needed to do, like go to work.  And finally the straw that broke my patient self, I was sick of training new and very inexperienced personal assistants!  I wrote a direct, but polite e-mail and sent it to everyone I knew who had a say in my direct care services!  I did not expect much if anything to happen.   


However, I was amazed by the enormity of the changes that came!  A new assistant manager was hired, and I got three personal assistants that will work throughout the weeks, until I hire a live-in.  So, I have two personal assistants sharing the weekday shifts, and a weekend person.  Within two weeks of  sending the e-mail, I was busy training all four of these people separately.  Of course, one of these assistants did not stay, so I trained a fifth person on short notice!  I have no doubt I will be training at least two more people before things start settling down! Would anyone like to take over being me for a week, while I go on a much needed vacation?    


I promise I am almost finished with this post!  In addition to three daytime personal assistants, I also have three nighttime people.   One works Monday through Thursday nights,  My sister works Friday and Saturday nights, and another woman spends Sundays with me.  Having my sister working with me is nice, because it gives me some stability.  Plus, I have her do some things that I only trust her with.  So, I am trying to keep track of six personal assistants, and myself!   


I have lots of stories about my personal assistants, so stay tuned!

Posted at 10:08 AM by

Hello world!


Welcome to my first blog!

Hello!  I am Jan, and welcome to my first blog! 


Starting a blog is not the easiest thing to do!  I wanted to begin by being all mysterious, and weaving a true story that would leave you with a bunch of questions wondering who I am.  But, I can not do that, because that’s not who I am.  Well, maybe I am a little like that, because unless people take the time to get to know my inner spirit, they don’t really me at all!  Of course, this statement is true for everyone; no one knows anyone until someone decides to take the time to  get to know an individual that somehow catches their interest. 


Since you are reading my blog, let me paint a word mosaic of me, myself and I! 


I am. . . . .   


My parent’s daughter.

A granddaughter.

A niece.

The youngest of five siblings (two sisters and two brothers). .

A cousin to many.

A sister-in-law.   

An Aunt ten times over (five nieces and five nephews).   

A dairy farmer’s daughter.

I am fascinated by how plants grow! 

A bird watcher.   

A member of  a Baptist church family. 

A reader.

A writer.   

A person who loves playing board games.

An animal enthusiast.

A movie buff.

A want-to-be-world-traveler,

An up beat person who  sees the cup as half full.   

A person who pays the rent on her apartment, and the rest of her bills on time.

A Self Advocate.

A public speaker.

A member of Oregon’s Developmental Disabilities Council.

The Chairperson of the Self-Advocacy Committee.

And, an employee of the Oregon Health and Sciences University.

I am Jan Staehely. 

I think I am missing something here!  What is it?  I am afraid of bugs, especially bees and creepy  crawling spiders.  I have a dog named Duke, and an aloof  cat named Danke (the German word for thank you).   

I am still missing something.  Oh, what is it?    I am looking around at my personal space.  A communication device and part of a wheelchair come into my view.  That’s it! Now I remember!  I have Cerebral Palsy (CP). 

I bet you’re wondering, can she truly forget she has CP?  Not in the general sense that I am reliant on a wheelchair, or use an device to be understood.  However, sometimes when I am out in the community and feel people staring at me, for a second I panic and wonder do I have my breakfast all over my face, did I forget to have my hair brushed, or zip up my pants, or am I dressed at all?  Then it hits me, oh they are staring at my disability. 

My Mom was never shy about explaining my physical condition. to people  I  remember being out shopping, and women would come up to Mom  and say, “My, your little one looks so tired!”  My head would snap to attention, and I know mom saw the defiant look in my big brown eyes.  She would smile at me, and still smiling turned towards the woman and say, “No!  My daughter is not tired.  Jan just has Cerebral Palsy.  Basically, her brain and the wiring to her muscles have trouble communicating. Everything she does takes extra effort for her to do.  When she does relax her head tends to fall to the side.  Despite all those faulty wires running through her body, Jan is highly intelligent!” I  know this because every day I see her determination to emulate her sisters and brothers, and her wit is uncanny.”   These people  would walk away from us thanking Mom for being so candid with them.  

In this way, I was  taught that unless I tell people precisely what has made me stand out from other humans, not many individuals  would attempt to get to know the real Jan.  Whenever I see a child looking at me curiously, I want the chance  to help them learn about why I am in a power chair.  It saddens me when parents discover their children looking at me, and quickly usher them away.  I don’t know what they are telling them, if anything at all.  However, to me, they are teaching their kids to be afraid of a person who has a noticeable disabilities.   

Sometimes an open minded parent will let their child approach me.  If I am caught off guard it can take me a few seconds to get my muscles ready to work my communication device.  I rarely get past saying hello, before they wander off from me.  I don’t blame them for walking away: They have no idea what I am doing.  For all they know I could just be spazzing out, and I know that can be scary for a kid.  Another factor is that a minute can seem like an enternity for someone that doesn’t know what is going on.   

 However, once in a while someone will stay and listen to what I have to say. I know we are having a good conversation when the child or adult understands me through my communication device.  When that person and I part ways,  I think I just experienced  a successful day! 

Now I don’t particularly think my life is all that interesting, but who ever thinks their existence will be something people want to learn about, right?   However, after so many years of my  friends and family telling me they learn from my life through my writings, slowly that message has sunk into my head!  Since I have a lot of stories  piled skyscraper high  in my 41 years young mind, I need to get them out!  I lhope you like the adventure! 

Posted at 5:26 PM by