Holidays End

It’s Sunday afternoon already, almost three and three o clock is pretty late in the weekend not as bad as four o clock it’s pretty late. Too late to start anything new except the wash and maybe dinner, I rose late today and did not even get breakfast done till 12:00 and the breakfast today was garbroch, so the meal is still sitting with me. So I will not even begin dinner for another hour or so Today I want to make single meat meatloaf—just hamburger. I figured meatloaf will be the change from turkey we need at this point on Thanksgiving weekend. The turkey has been boned and the meat is either frozen in small pouches or waiting in the fridge for sandwiches or snacking, the pies are gone and only the fruit cake remains. I hoping to post this to my blog today but I can see we have lost our connection..again but hopefully the connection will reestablish itself before I go to bed. Dianne and I are become more and more frustrated, it seems there seems to be a good sized portion of every day when he have lost our broad band connection. This is not good sign we have been with our new carrier, for only a short while, and I think we have been off line more then we were with the last carrier, which was a local type carrier. We hated that carrier because that carrier could nor keep their cable TV side of their operation up and viewable but we always seemed to be able to access the INTERNET.

I got an email from my little sister, Linda over night—a mom update. Seems my mom is having some heavy duty issues. Linda and Paul spent a good deal of time with my mom this weekend. Mom is beginning to do some pretty weird things which really makes me feel her time is neigh. Today is Sunday, which is the usual day I call my mom. Dianne thinks I should call soon or loose my opportunity, Di thinks I calling every day now, since she has been placed on hospice support—which I understand is “the end game”. What do I do.

Last week, at the office I was talking to staff about the holidays and the issues that step kids face with the whole holiday meal thing, where to go, or not go and all the politics which come with the”step” orientation. She looked at me and said, “Oh you know what I mean you’re adopted”. I was startled because I did not know what she meant. In my mind being adopted is not the same as being a step-child. To my knowledge I had one set and only one set of parents and they were very stable. Since I was basically adopted before I was born, I never knew my birth mother. Even though the upper tiers of my family were adopted and kind of played the adoptee game my brother Ross and I, both adopted, lived a fairly normal life. The kids which followed me were adopted too but not quite the same. Their birth mothers were actually cousins—they came to know where they came from, got to know their cousins were actually their brothers and sister and though they have the mother and father I did they also knew and got to know their birth parents. I did not live “that” step environment. I suppose everyone thinks I did and that is kinda weird.

New Treads

So this morning I had my appointment with my durable medical equipment vendor who is also my support group for mechanical issues with my power chair for the replacement of my mid-wheels. I figured that since I was there I would toss the other issues I have had this week at the techs and see if they could give me some direction. You have to dump on the techs this way cause their time is so limited or demanded.

I got to Magic rest a few minutes before my appointment, and the time the place opened for business. What is weird is that these kind of places will leave their phones ‘turned off’ until their advertized time is at hand. I must have arrived at the shop about 9:50 a.m. The techs were there I could see them moving round in the store. But each time I called all I got was the recording letting me know there closed and their ‘normal’ business hours.
And sure enough, exactly at 10:00 the head tech turned the phones on and I got hold of as technician. I like to do this—I then have the technician come out to the van and collect my chair and let them work on the machine while I sit in relative comfort of my van. Really, it just easier this way . Years ago, when I was pounds lighter and much more agile I would never have a problem jumping out of my chair but is an entirely different story. So the came out and drove my chair into the shop and an hour later I was on my way and $160.00 poorer. The rest of the bad news included that I have a hole in my right motor which is the reason for the “chattering I have been experience the last could of weeks, plus with the motor running low on oil, the motor heats up and the chair shuts itself off until the motor cools down. Plus the cord which connects my controller to the drivers needs to be replaced. The motor, if I should need to replace could run as high as $1,500.00 and a $130.00 for cord. I am going to have to check with the head tech on Monday and see what they can do. There is a possibility of getting a rebuilt motor at maybe half price or something but now I really need to move forward with getting a new chair with the items and features I need. My sales guy has been out of the office all over the holiday but should be back in the office on Monday so no now I have to put the heat on. For the time being I have new tread on my wheels and kind of knowledge of what is wrong with the chair and that even if the chair strands me. If I am patient the chair motors will cool down and I will be able to continue on my way.

Thanksgiving 2008

Thanksgiving was OK, we scaled down, did not go anywhere and did not have anyone over for dinner. We were about 7:00 a m and Dianne had the bird in the oven 8:00 am with a target of eating about 1:00 pm. We were a bit surprised when we got a call from Charles our youngest letting us know he and Aurora would be stopping by round 10:00. Not a planned event but it was great getting a chance to visit with Charles.

Mark came over just as our dinner was getting finished. I had asked that Mark come over and put the big computer system together—which he did and I was excited to have both systems working. We did run into one problem however: we could not get the systems to find the INTERNET and we had to eat and Mark also had to go and get his Thanksgiving dinner on the road. In fact I think the main reason mark came over was to invite Dianne and myself to dinner with his inlaws. We appreciated the invite but really did not want to one: wait to eat till 4:30; and two: have to endure the chaos of his inlaws holiday dinner. Not that we don’t appreciate these folks but the family is a typical mormon extended family “billions of kids, adult drama( all the time) and a drive to an area I am not familiar and coming home in the dark. We begged off and sent Mark off with my appreciation for helping me get my system back on liner.

Dianne and I had a great dinner, we were stuffed. Dianne had promised Anakah, that Dianne would visit after dinner. I stayed home and tried to complete my INTERNET connection, which I was not able to do and I ended up watching cable and dozing until Dianne got home. Michelle called and did the holiday visit and that was it. A little more TV before bed time then bed. But it was a good day. I think we enjoyed the holiday without the holiday family stress.

Serves me right!

I was trying to do an end run, save a little money and keep my power chair powered until I can get s new chair or something. I was going to give the reutilization project, I am part of, a try. I have been in conversations with tech and he assured me he had motors which would fit my chair and I should come over and we could check them out to be sure. I tried to go over yesterday but Jose was out on appointment so I sort of made an appointment for today. Jose assured me he would be into day but asked that I call to be sure that he was in just the same.

I waited until ten this morning before I made my first call to Jose, he did not answer his phone, which did not necessarily me Jose was not in—he could have been on the phone of with another consumer and surely would be free by the time I got to the Buffmire building. I was operating on faith but sometimes one has to. So, I took off to the bus stop for a ride to the Westside. I had been charging my chair since I got into the office this morning at about 10 minutes to seven so I knew I had the “Juice” to get where I needed to go. The morning had turned warm, autumn warm with bright sunlight showing. I waited for the 217 which runs on 15 minute head ways and the bus was there. One of the older vehicles which actually had a wheelchair lift. The new vehicles are kneelers with ramps. But I had no problems getting on the vehicle. I backed in and the driver tied me down or rather my chair down and we were off.

It was weird I had got the west side and to the street I needed to down load. The driver stopped the bus and walked back to me and undid my restraints and I turned on my chair but nothing happened. I just got “fast lights” blinking which means there is a problem somewhere in the electrical system of my wheelchair. No matter what I did I could not get my chair turned on so I could dismount the bus. The driver tried to be nice, as much as public transit operators can be but I knew she needed to get on her way. I decided that I was close enough to my end point if I could just get off the bus, and le the bust wander away I could call the Buffmire Building and I am sure the would send someone literally push me to the building. I showed the driver how to disengage the clutches which sets my power chair into “free wheel” allowing me to move by gravity or being pushed but having no control or my mobility. I was moved( excuse the pun) when the young man who had been sitting next to me volunteered to push me where I needed to go. This was quite a rave act for this young man—who’d to say I would not demand that h push me all the way back to my office. But he hopped off and he did push me the block to the Buffmire building where Jose was not but luckily we were able to run Jose down by cell phone and showed up in about ten minutes.

When Jose did get to the building he seemed a little distracted but was able to get me and my chair back to his work area. The time was about 11:30 and Jose then informed me he had a 12:00 pm doctor’s appointment. Here I was, once again, the kinda of consumer I hate, one who shows up for services thirty minutes before lunch or closing time. Jose worked hard and fast tearing my equipment apart trying to find the problem, trading part with other chairs and finally isolating the problem in the harness. Jose also indicated in the course of the search that my chair was newer then the chair he had harvested the motors from and those motors would not work on my chair. Sigh the trip had been in vane. I am glad, however that I chair decided to fail on my trip, at least there was someone there to assist me. The experience was a lesson. I am going to just have to accept the fact I am going to have to go through my durable medical equipment provider—pay the price what ever the price might be, and get on with it. I shall always be poor.

Chatter Chatter

I have done it again, I have waited too long, drug my feet and now I am looking down the barrel of some serious wheelchair trouble. This morning for the first time I am aware of the motors on my power wheelchair have began to “chatter”. I have been told this phenomenon happens when the motors began to fail. I guess what happens is the motor seize and release very quickly causing the chair quickly start and stop making a staccato or chattering sound. At this point the chair is still running ok, I am seeming to get everywhere I need to go but I can tell major issues are happening.

I am waiting, here at work, for my friend, Jose, who actually runs the local reutilization program. I am part of this program, a program dedicated to the reuse of good durable medical equipment. The program is not what I envisioned when we started the program but I have accepted the new direction and am trying to support the project. Essentially, the main point of the project to make this equipment available. I have never had to use the program as a consumer, as the program was designed but now I am going to see how well the program works.
What the program does is take in equipment which is no longer needed, like manual and power wheelchairs, the program fixes the equipment and check its durable. What’s great is they, the program, have literally piles of wheelchair motors and the technician feel they may have a couple which just might fit my chair and if they do, I can pick the motors up at greatly reduces cost.

Now, because there is a draw back to everything, I have to worry, if in fact I find a set of motors which will fit my chair, well the attention to my chair jeopardize the chance of my getting a brand new power wheelchair. The insurance company reasons if the old chair has new motors, batteries and controller why does the guy need a new chair if the old chair has all these new parts? But since I am getting the parts from the used parts program the insurance never needs to know.

Well, the day is now half over and the tech has not called and I have called at least three times. And what makes things really worse, when I returned from my meager lunch which was interrupted by only one homeless person who I guess did not realize that even civil servants eat lunch from 12:00 to 1:00 pm; Brent the sales guy I am working with at Magic Rest calls, the first time in weeks about showing me new chairs. I had just about given up on Brent and he shows up on the day I contemplate checking out the motors. I think I am still going to have to check out used equipment because I have to do to keep this chair going until I get something else and now that the chair is “chattering” I best be quick.

Getting Ready For T-Day

We bought the fixens for Thanksgiving Friday. We teamed up. Dianne drove me to the market and I in my power wheelchair zoomed round the market throwing items into my basket. Dianne stays in the van keeping it warm and making ready for a fast get away if we need it. I have worked out a pretty good system. I get a lap basket and a regular shopping cart and then move the cart to the end of each row I am shopping—or I will leave the cart by the check out area with firm orders that no one is to take the cart regardless of how deserted the cart may have appeared. Then I scurry up and down the aisle dumping my basket into to shopping cart when ever my basket gets full.

We’re doing a very scaled down version of Thanksgiving this year. Diane and are sick and all the extended families seem to be having their own dinners else where. A 12 pound bird, mashed potatoes and gravy, dressing, bake and serve roles and at least one pumpkin pie maybe two.` Sweet potatoes, green bean casserole and cranberry sauce. About $40.00 all told. Not bad. We have enough if someone should stop over needing a meal and if no one stops by we will have a great feed of our own with lots of leftovers. We stopped at the liquor store—which is one of my favorite places during the holidays. I believe the holiday spirits lingers best and longest at the State liquor store. I really didn’t need any lavations but I wanted to shop and I came way with a bottle of blush, amoretto and some Irish cream for my coffee.

Tomorrow begins a short week at work and the Boss is gone for the week and the new guy is in charge. I hope to be in and out of the office on different projects during the week and stay out of the new guys way. I hope to get the motors on my chair looked at and hopefully replaced. There should just be four of us in the office this week: Frank, Chapman, Red and me. Should be easy duty. I just need to stay out of folks way.

Ghosts!!

There’s ghosts in our office, at least one. I don’t think about the office ghost much he or she is just there and I have accepted this and moved on. The ghost does not bother me and I don’t bother the ghost. However, the ghost came up this morning during coffee discussions at the office. Relatively new employees at this office who have not had experience of hearing or interacting with the haunt , of course doubt the authenticity of the tale, just blow the whole idea off. Any way the ghost IS here, whether they want to believe it more not and eventually all staff will be made aware of its existence. I don’t think I have shared with you’all the vid I made of one of the encounters I think I had with the entity.

1-2-3 CLEAR!

I have been trying to get used to being a “one computer” house all week, ever since I made the decision I was not going to pay nearly a thousand dollars for a rebuild of my last system. I had called and told the technician to “button-up” my system an I would be to pick up the box sometime this week. Well, today Dianne was out and about and stopped by PC Lap Tops and when she asked for my dead system she was shuttled over to the store manager, John, who began telling her another story of what I was told. Essentially, Bill tells Dianne they can conjure up a working system from used parts for way less then what I was quoted for new parts. Granted, I did ask them to prepare a quotation on new parts, but I also wanted a comparable quote on used parts. Actually, another tech said he tried to build me one from used equipment but said there was not mother board which would go with my sockets or processor or some odd thing. Now there is a plethora boards and processors and low-priced power supplies which they will assemble and get my old system back up and running for less then $400.00 which is much more what I had in mind. I think once I have the system up and running I am going to start an aggressive program of replacing these used parts with new and powerful parts. Let’s face it I just could do the “one computer thing” for very long.

Work Sick

Council Day every staff member is needed to insure a good Council Day and I have had enough of being sick so I drug my sorry butt out of bed and went in—thank god Dianne was there. I actually could not make the lift from my bed to my wheelchair. I had to wake Dianne up and hold the chair steady for me—mind you that never happens and has me more then just a little concerned. I am hoping I am just a little weak from so much coughing and such. There are some other problems I need to address and I have been putting them off but now I have to come to grips with these issues so I can continue to live as independently as possible.

The cold morning air felt good on my face as I left the house and motored down the ramp, I stopped at the neighbors and picked up the paper off their drive way and threw the paper on their back porch and headed further up the road, I zigged and zagged but the cold air helped me focus enough to force the zig zags into more or less straight line. I was focused enough to wait for the train as I got to the station but not focused enough to read my paperback—so I just sat there with my parka zipped up to my nose and stared at the lightening sky. By the time I got to work I could tell I should have listened to Dianne and stayed home one more day and that today was going to be a long day a very long day.

I covered phones during the first portion of Council and I began to feel a little better as the day continued. I had not had time for much a of a breakfast before I headed out the door so when the caterer showed up with her full Thanksgiving dinner was ready. I got my plate of mashed potatoes and gravy scarfed it down and began to feel load better. This afternoon I have felt much better but I can feel my cough returning but know I am on he mend and tomorrow I will be better. I canceled the broadcast I had scheduled Thursday for two weeks from Thursday December 4th and the rescheduling has made me feel just tons better.

I am about ready to head out for home, Bill and Shirley were just in my office and I was about to show them what I have been doing with the broadcast project and I think I must have got a major endorphin jolt because right now is the best I have felt all day.

Home Sick

I am home today, ill. I hate missing work but I could just not make it in to work today. I have been down all weekend long, really down, sick in bed down. I am having a problem bouncing back. I am hoping I will be able to make it to work tomorrow but at one-O-clock today I cannot say. I am stuffed up, a bit dizzy and I have something in my chest BUT I am not coughing like I have been and I feel if I can make it to work I can stay there all day.

And now for something really serious, I finally was able to call PC Laptop and got hold of Bill the head tech or something. Bill started off my telling me that my computer was next in line to be to be served or looked but that is what I told last Monday , that there were about three machines a head of mine so I was a bit chagrined and I think Bill heard that in my voice and so he looked it right there while I was on the phone and soon I had the grim news that I basically needed a whole new rebuild of my computer; mother board, Processor, power supply and whatever the hell else they can stick me for. The numbers tumbled and when they all fell it looked like the price will be over 700.00 dollars!! I cannot do that, not right now—maybe if I did not have the loan on the van I am having to pay off. Bill is going to leave the system on the bench for the next day waiting to hear back from me but I don’t know what else I can tell him, this close to Christmas, the economy or what ever. I would really have to come up with a great idea to justify this kind of expense. The other idea is purchase the parts little bit by little bit and have Mark A assemble the system as I go along. Bill thought this was a stupid idea but of course he would—however, Bill had good arguments like the PC Laptops would be there for support and help if I and when I needed the assistance and finally the simplicity of having someone else do the rebuild. So, I am just going to have to stop by and pick up my “box” it’s a nice box Bill said so.

Thanks Mack You'll be Missed

Yesterday I was checking links on my Disability Links Page and I came across what I thought was a broken link. I would click on the link and it would render only a 404 page where Mental Health Association in Utah should be. Then just on a hunch I went to Google and did a search and again nothing; everything, every bit of the website for

I found out yesterday that Mental Health Association in Utah Health Association in Utah folded back in September victim of the economy, a private-non-profit agency here in Utah that I was fortunate to cut my web design teeth in. Dr Mack Gift, was the executive director, and a good friend of mine. Mack was working for the state out of the same office that I worked out of. He was hired on “soft money” and eventually Mack needed something an option with a bit more substance and that was when Mack took over leadership of the Mental Health Association in Mental Health Association in Utah. When I first went to work with the State I was required to learn enough web design (HTML) to update the website with was part of my operation; which I did. I learned enough I could craft a basic website an I was able to convince Mack to let me develop the website for the Association. I have to admit I amazed myself and in due time I was able to put together a web site, which ran for a number of years, and which Mack paid me fairly well over my involvement with the project. I learned enough to learn that I really did not like web design as much as I like the idea of being a web designer and saying that I ran a website—this maybe the fact that I was doing this only as am part time affair and doing the work after hours and on weekend which I was surprised to realize how much I resent ed the commitment. I liked the money. I eventually used the payments as my Christmas fund, not billing Mack until late November or early December usually giving me a $1000.00 or more to use over the Holiday season. Mack always paid, however, painful it was to him when I presented him with an invoice and I appreciated that.

Mack’s plight is the first( actually the second) I have heard as a direct result of the economy plunge. I fear many more are going to dry up and loose their private non-profit lives and then Staten and Federal not to mention all the other private sector jobs. Mack is even older then I and he might just finish up his existence on this Earth on his Social Security. I am tempted to go that route should my State position dry up. I should be eligible for SSDI now and I think I could live on it. Dianne and could make it together—our quality of life would not be huge but we would be able to live and keep the house. It would be survivable. I could make

Looking For Heroes

I love this time of the year—it s the time when miracles really stand out. I firmly believe in miracles are happening constantly but go unnoticed until now. It also a time when people, themselves, are more likely to step up to the plate and take a swing at being a hero.
I got a call this morning from a caller down South. Living in a fairly conservative city about a friend…an acquaintance living in someone’s hall way. The person is a women and uses a wheelchair for mobility and is basically homeless. The person who called had gotten to know the wheelchair person from just frequent public contact like at the market and other places. The caller says they are not friends but she has come more and more concerned and now wants to help this person out. So, I did the requisite to the local Independent Living Center and community action agency and between those two calls if each staff is any good at all should be able to link this person or point her to the appropriate program. In the process of the call I asked the caller if her home was wheelchair accessible. The said, she had never thought of that—I thought if the place was accessible in the least the maybe she could have the friend over for Thanksgiving—and interesting idea but the caller was going out of town.

But there it is; someone thinking of someone else, maybe for the first time season. I believe this person is going to assist the other in becoming less homeless and maybe more independent. I stated toward the end of the call that she has become a hero. Of course the caller backed away from that moniker real fast—oh I am not a hero, she said. But you are I said. I know these things, I get calls day in and day out few ever want to know what THEY can do to assist the problem, to be the solution or even part of the solution. I told the caller that I envied her because she might be one of the lucky one to witness a Christmas Miracle first hand. She lused over the phone and said I did not know what I was talking about and I counter with I do know because this is hat I o for a living. I talk with those in hard places or going to hard places or know others going to such places. I am the guide, I see things happen—sometimes I actually guide them through the hostile land, or eviction, homelessness, poverty and hunger and I see the miracles o a daily bases but nothing seems so special as the miracles wrought by reluctant Heros.

I'm Back

We have been offline for two days now and just a few minutes ago Quest fixed our connection so I am back on line with a real posting instead of the Twitter posting which leaves a lot to be desired on all respects. I have rather sad news to relate however, in the time we have been off line Mark A came over and diagnosed our PC dead.

Our PC has been dying for sometime, in fact we may have killed the system ourselves, unknowingly but killed dead just the same. I have heard a fan slaving for the past couple of months now, every time we started the system you could hear a fan trying to start up. I should have taken the system in right then but I did not—I was sort of hoping the sound was a small issue—it was not. Something was not being cooled down. Actually it was something on the motherboard. Mark came over yesterday and we disconnected the big system—the biggest and best system I have ever owned. Major speed, storage and capability and I will miss the system. To repair or not repair, that is the question! The outfit which built the system are gone—they were just too good and pricey for their own good. I got good a number of deals on my equipment because Josh, a close friend of Mark A’s worked at the shop. Nothing “hot” mind you just some good prices on equipment that I would usually never consider because of price and sophistication. I got this “life-time” warranty on the system which has actually been picked up by a similar shop. I have thought about dragging my system in and having them “bench” it and at least perform an autopsy to see just what was the “cause of death”. But I am hesitant, I just know they would want a proof of sale of some kind, I would. Maybe I can check my bank account and maybe years ago there is some distant record for the computer purchase.

I am still thinking of replacing the unit with a system which may not have the speed or over all power but which will allow me to write, access the NET allow Dianne and I to be on system and on the NET at the same time. I don’t even need a new system for that; just one which boots and works. I have asked Mark A to be on the look out and he has a number of friends who are sort of in the computer industry and they might have access to affordable ‘used systems”. Economically this is not a good time to try and replace the “big guy”, But I hate having to rely totally on my lap top—I have had the Satellite for a number of years now and I would not be surprised if this system failed, and then we’d be un a real mess. It sounds like I need to make a healing chicken soup. Dianne is coughing and my throat is scratchy. I make healing chicken soup—I gotta go…I’m Back!!

I Did Not Go...

Yesterday the snow came followed by cold air, really cold air. I was also supposed to drive up north to participate in an Information Fair in Syracuse. Not far maybe forty miles away. But this was forty miles (up and back)after a full day of work. Forty miles most of which would be in the dark after an all day storm. The snow fell all day till 3:00 pm and I was planning on leaving about 4:00pm because I wanted to at least drive up to Syracuse in as much daylight as I could. The Information Fair was to start at 6:00 pm and end no later the 8:00pm.

He snow worried me as it fell and luckily, the ground was still pretty warm from the recent Summer and Fall so the snow was not accumulating and no snow accumulation is good. I did not want to go to this I&R I could say I had a feeling but my boss seemed insistent that we go and really as the day progressed I kind of got into the spirit. I was going to go smile, pass out information and drive back very safe and leave early today with the two or three extra hours I would earn. As the snow fell, all day, the staff kept telling me not to go, Dianne called a couple of times worrying about me going—but I was going. I had driven into work and ofcourse some one was parked right next to my van and I could no access my vehicle and had to have Frank drive the van out—then there were last minute calls as I was trying to leave and eventually I finally got free of the office in my van a little after 4:00, the sun was shining brightly now and felt I could make the trip. As I transferred into the driver’s seat from my wheelchair my world stopped.

I mean literally stopped. I drive from, what is called a six point power seat. This seat swivels, raises up and down ad slides back and forth under the stirring wheel. What happen was some how there a short had developed not allowing the driver’s seat the ability to slide me forward! I messed and messed with the switch which drives the seat and the seats various functions, and eventually got the seat to move forward to a point where I could drive safely. I figured that when I got to where I was going I would b able to get myself out of the seat one way or another. The biggest fear I now had was to be somewhere in Podunk Utah and be trapped in my van after dark. I decided then and there I am not going to Syracuse—I am going home and I did—and I am sure that made all the difference.

Corporate Invisability

When I first came to Salt Lake, over twenty years ago, I came to work at the Independent Living Center in Salt Lake and I was hired as the Resource Coordinator and part of that job description was to work in the community to bring a more affordable, accessible public transportation to the great Wasatch Front. My job was essentially to make the public transportation system wheelchair accessible. In 1984 there were no accessible bus routes in the city, the city had purchased something like thirty buses from another transit authority which were wheelchair accessible but had been bolted shut so the wheelchair lift cannot be used. A major struggle in sued which lasted years, resulted in bus strikes negations and finally a fully accessible transit system—actually two bus system: an accessible main line service and a para transit system which has been which has been a sore reminder of one of my greatest failures, but the greatest failure is fodder for another blog posting.
One of the spin- offs which resulted from the days of storm and stress for an accessible fleet is the Committee on Accessible Transportation or (CAT). A committee rising out of the transit wars, developed by the transit authority management .

The CAT was and is made up of perceived local transit leaders—vocal folks with disabilities who possibly could influence decision makers. I was on the committee, there were reps from the blind community, physical disability a side from the Independent Living Center, Cerebral palsy, and others I have forgotten. The authority usually supplied a lunch and a year bus pass! The pass alone was worth hundreds of dollars but I soon realized nothing happened with the committee of any consequence. In fact real issues public transit and people with disabilities often “bottle necked” in the committee sometimes never getting out. There were battles in the committee of one disability group against the others taking months if not years to resolve. I would leave each meeting more and more frustrated and angry until I realized CAT is a holding tank!! What a perfectly, simple plan! Compromise the most, vocal, visible and committed transit advocates in the community give them a fancy dancy title and “buy” off with a bus pass. The transit authority, in one swoop, made the best advocate invisible from the board of directors, the folk who can make the “real” decisions . Once I made the connection I resigned from the CAT cut up my bus pass and bought my own, headed back to the board meetings where real advocates belong, where real advocates can make a real difference. I have also tried to get the other advocates who had been on the Committee realize what they were doing, what was happening to them, the best advocate in the system, but continue to frequent the meetings and I do not see a whole lot being done.
I heard earlier in the week the boss was considering becoming part of the CAT Committee, she knows how I feel about the CAT and how the people are being used by management. She says she is just going to go to see what it is like and what the CAT is all about. I just hope she does not become one of them!!

Well This Day Ever End?

Its the first day following the switch back to Mountain Standard Time; I have been sitting here ay my computer yawning and falling to sleep on the verge of feeling guilty. It’s now late afternoon, the clouds for tomorrow’s storm have rolled in, blotting out then sun and bringing on an what seems an early evening. The dark prelude is not for an early evening but to an evening as usual evening, that even on clear cloudless nights the sun will be setting (what seems) too soon. The “too soon sunset” is only exacerbated by the new State work schedule of 4/10’s with quitting time being 6:00 pm and the world is dark when I leave for home. I leave for work in the dark now too so for the next for to sixty days , except for the weekends, when I am home it will be dark and for some reason that strikes me as weird.

But usually I stay focused and conscience thru my work day. I do not have time for falling a sleep in front of my terminal--I will be glad when I get passed this yawning behavior and again, look like the professional I am.

Cold and Rainey Day

It seems the Winter and wintery side of fall has finally arrived. Cold wind driving even colder rain has blown into the valley making the decision to stay inside wise and comfortable. Dianne even went out this morning to so some grocery shopping and returned with bags and bags groceries saying she must have been “winter hording” bug. We’re in now warm and quiet-Dianne reading and me writing and working on the computers. A perfect winter afternoon, I downloaded a piece of software for fire recovery just for the fun of it. I have the software scanning system now…I don’t know how well I like the software however, it seems to be taking a long time to scan my system or I don’t have any files to recover which I doubt. We reverted to Standard time last night. The day is dark and seems to be lasting for ever.

The Gore...The Gore!

Rather then packing up on sugar and candy treats and sit by the front door all night and pass out treats to all the neighborhood urchins, Dianne and I opted to take the low-road and and close up the house and move our bedroom in the back of the house and watch TV all night. We really did not think this an issue let alone a morale issue till Anakah called asking what we planned to do during the evening gaiety of little kids scampering across streets and yards filling the bags and pillow cases with tomorrow dental bills. When she found we were doing nothing Ani was aghast. You would have thought we had informed her we were going to drink heavily and drown kittens and puppies just for fun. Even after we assured her we just turning out the lights and watching TV in our bed room and after we signed a document certifying that no small mammals or any other animals were harmed in the execution of our Halloween evening Ani still wanted to do some kind of intervention. She even , at one time, offered to come by her self and pass out the candy just so our home would not be blighted with the label of, "the house which did not celebrate Halloween". Luckily, for us, Ani had a Halloween party followed by sleep over. Ani did the next best thing of things she could think of and that was to drop off a pumpkin in the spirit of the day, her last hope that that pumpkin magic would change our minds. It didn't. In fact it was best she was not here as we gutted the squash and placed the thoroughly cleaned pumpkin halves into the oven and cooked it for pumpkin pies. Dianne even made a small one for Anakah--we won't tell her where it came from until after she has eaten it.

Almost Halloween

I sent this image to many of my friends on the email as a Halloween card and i was surprised at how many returned the email wondering if I had caught my lips in a vacuum of milking machine--they did not realize the lips were plastic lips which used to be found everywhere there penny candy stores. My boss passed these out to staff this morning in honor of the this mid-level holiday. I like to hold the lips in my mouth as long as I can before I end up chewing the wax lips like gum.

Broadcast Done

Here is the broadcast--we did it yesterday and it came out better then I anticipated--at least that is what everyone ,who has seen it, is saying. The next broadcast will be in November and hopefull will be much better.

You will notice I have embedded the entire 28 minutes or so of the broadcast not that the broadcast was good, in so much as how bizarre I tend to come across on the camera and how huge I look on camera. Dianne has some suggestions as to how or why this happened. we used a typical webcam for this project and it caught at this totally weird angle--trully this is what Dianne said. But, I am now dragging my DVD camera and firewire out of retirement. I think if we use these devices on the next broadcast the quality of the product will be much better. Actually, I must admit I kinda of liked the experience and I am looking forward to doing the next broadcast with great expectations. I still have to get to know the software on this website much better especially the chatroom aspects.

Testing 1-2-3

Tomorrow is our first broadcast and we are not ready. I am going through with the plan anyway and I am sure we will learn tons but I will be hppy just to get the broadcast running nd have a few people log-on to the broadcast and to see how the system all works.

Bonnie and I went over to Office Depot(OD) this morning and found a camera which will work with VISTA . I VISTA but I am being forced to comply with Gate's change--I hve never really considered changeing from PC to Apple but today I am beginning to consider going to another system.

When Bonnie and I got to the OD is was closed and not to open for 30 minutes so we went to Barnes and Nobel to kill some time and I was able to find some more information about about thw books of David Foster Wallace, the writer who hung himself the middle of last month. B&N did not have the huge volume of his huge volume Infinite Jest but the volume was not in it's place. I will try to find it on the INTERNET maybe even order the volume and see how much the thing intimidates me.

When OD fifnally did open we quickily found the equipment we needed and retuned to the office and set up the camera an tried to figure it out. So now we have the camera set up but I am a little diappointed but I have some other ideas and we will have to explore those.

I f you want to see other test clips then go to http://www.ustream.tv/channel/access-utah--now. If you want you can tune in to our first real broadcast tomorrow at 11:30 a.m. mountian.

Body of War

My office has become a political hotbed since my current boss has taken over a couple of years ago and that is cool. I like the office that way, this level of political involvement makes feel I am keeping in touch with the national scene. When I worked for Independent Living (IL) I felt I was on the cutting edge of all things political related to disability. Now I am working with an office atmosphere which is much more sensitive to developmental disability and not cross disability but still I like the daily tension the political decisions of our national leaders render and the tension and contempt to see and now how negatively these event will affect people with disabilities which to a degree equates to job security.

However, I am a pretty shallow duck and though I can be a political player on any level, local, state or national. I basically turn of the”juice” at five o clock or when the assignment is done, and pick up my “other” life. My boss, however loves the political scene, more then just work—she is into it following the national players like some follow movie stars live or national sport figures. This is really cool for the boss, because it gives her always something to do there is always some event happening or speaker coming into town or film and lecture to go. It makes me a little envious. Dianne has been getting deeper and deeper into the political spectrum as well. So when the boss started talking about Phil Donahue’s Body of Lies I perked up. Phil and company were coming to Salt Lake for a film and lecture in fact the film and lecture was part of a whole weekend lectures, other films and general activism. I told Dianne and showed her the hand out the boss had given me on Thursday as we waited in line to vote Friday.
Cool! I thought I was going to do some thing like the boss and become involved for free, just because I believed.

The lecture and film was to start at 6:30pm—by 3:30 pm we had voted, had lunch with my daughter Bridget and I was wasted. Dianne laid down for a nap and I just wondered round the house tying to nap in my chair but not being very successful. By 4:30 I had found the Medical channel was watching fat people loosing weight through the magic of medicine an money. Dianne was up and changed by 5:00 and getting ready. I was going to change into more “zippy” but decided to keep my weekend slacks and sweatshirt. I looked pitiful like a holes guy ducking into a film and a lecture(free) to get out of the elements an snag a few Z’s and maybe some wine if there happened to be a reception following. We drove the van into the city, I took a bit to find a parking place—It has been a while since I was really out in public after hours and needed a parking space. We walked a couple of blocks but go to the lecture just as introductions were being made and even though I m part of the Left and maybe even the Far Left. I forgot what the left looks like students, weirdo’s and radicals. In fact the disable seating was at the top of the seats and true to form there was a homeless guy, who looked just like the Uni-bomber. Even the Uni-bomber could not take it longer after about an hour into the film got up and grabbed his back pack and blanket and left the building. Dianne gave his seat the once over to make sure he did not leave any packages behind.

I had issues with Body of Lies, A film about the struggle of a vet wounded in Iraq a T-12 para who was just a boob. Phil seemed to makes as many mistakes a film maker could make in producing a film about a person with a disability. I can understand the need to “grab” your audience but use the old “gimp” in your face or rather “pathetic gimp” in your face trick.

The question and answer after ward was just as bad with all the folks who were out of the audience being abducted by aliens were lusting and fighting for the microphone to give the best personal Iraqi war story. Boy was I glad to get home. There is more today and even tomorrow but I might pass. I want to make soup.

Copier?

Board meeting is over, done for another quarter atleast! And I more or less survived. Really only three of the six or seven board members showed up and the ones which did show up arte the good guys. We chatted, had Hershey’s kisses and finally got down to business of the meeting. I passed out hand outs, essentially the statistics of the following year and last quarter. I made it look effortless—thanks to Dianne and Tory and even they did not know the trauma and terror I passed through getting to the point of seemingly effortlessly passing out the handouts.

I realized with a start at yesterday’s staff meeting that I had now process the stats for the first quarter of our physical year which ended in September. I have been so engrossed in trying to complete the Annual Report that I totally spaced the Quarterlies. So yesterday afternoon I was downloading the totals I could get off the pathetic call tracking software I use and tried to think of a way I could process the data into some sort of readable document before the next morning. I should have been on this task all three days of my mega weekend but the boss really talked me out of it saying I should enjoy my weekend time. Really, who am mi to argue? So I zipped the data in my thumb drive and headed home on the train, as I swayed on the train a solution, a simple solution came to me: I already have graphs built for the Annual Report, if I could sort out my raw data in the same way and then, all I would have to do is plug the data results into the graphs.

This is what we did and even that took much longer then I had anticipated but we did it and finally got into bed about 11:20 pm. So get into work and download the images and print out the quarterlies and I am home free.

So I drag myself out of bed , as usual, at 4:30 and get to the office with two and half hours before my meeting more then enough time except for some reason, when I bring up my images to print the images come out alright but they are in black and white! Not only did I save the filed to my thumb drive, but Dianne also sent the files to my State email account! None of the files would come up—however, on the lap top the files came up as they should. So we pulled all the plugs and tried to attach the lap top to one of the color printers but did not have the right USB extensions. It was Tory when she came in asked why we just did not print the color documents we printed off yesterday? Bing, Ding,Ding…my printer as well as FDB’s (front desk bonnie) had color printers which also act as copiers and the day was saved. We were printing right up to ten minutes before the meeting began. Everything came away looking good, making us look good.

Once again a bullet dodged.

Toil and stress

Tension, tension toil and stress
year end reports make life a mess
I'll be back sooner the late
but, for right now
y'all must wait!!

Just Waiting for Dad

>Mom elected to stay in Boise-I am writing this as an update to the post I did last week when I heard my mother was relocating again to Utah. Talk about a sucker punch, moving a 95+ year old women from a fairly safe environment, where she has 24 hour nursing care and supervision, relatively good food and a strong family support base to live with a family member’s family in a home which is not very accessible, but cold be. Granted the cousin has been a nurse and my other cousin is just a good guy who could and would make the situation work but I just don’t know if the these guys and that part of the family knows what they were getting themselves into. And I am not the family policeman, actually far from it. I am usually the last to know anything happening in the family and that is OK too. I really have my hands full with just my own little, immediate family with grand daughters, near and far, and kids everywhere it seems; so I try to keep my head down and watch the “bullets” over head. When I heard Mom had changed her mind and was not returning to Utah I called her to see how she was taking this decision and how the mess had got to the point it had. I found the decisions, she says, was hers, and that she was even barely aware of what was happening and to what level of preparations were being made or taking place. When I called my cousin, to where mom was supposedly moving he said the same. I am not sure but my mom and my aunt are very close and I know they talk everyday and I know the two can barely stand being apart from each other. They are the only two left in their generation, everyone else is gone and there are lonely for the mirror the represent to each other, seeing themselves in a better, clearer, happier time when ever they look at each other. So I figure in a moment of familial desperation, need and want they cooked up a plan to ‘break mom’ out of the ‘place’ and make a run for the border. But since their plan of escape relied so heavily on collusion of various family members the plan was bound to fail and in the end all they could do was to admit they new little or nothing of events which were transpiring. I think mom knows how good she has got it at the “home” where she is riding out her days working hard to be happy and content because that is what her kids and family want to hear. I am a parent I even now make silly sacrifices, the other day were out at a restaurant and she wanted a fairly expensive dessert , the solution was simple Dianne and I for went any dessert—what else could you do? So, I imagine Mom to some degree sighing and taking a deep breath as she starts removing her clothes from the suitcase and looking longing at the clock and her husband’s image.

Sons

Brooks left today to return home to Portland. He has been in town for a week with training and visiting family and friends--a seemingly very short week. The lad is doing great in the Vancouver/Portland area. Brooks has his own insurance business and is doing great. It was good getting a chance to see him.

Mark A was over yesterday, mowing the lawn and taking measurements to fix the over hang our ramp. It is currently in such disrepair that when the snow and ice come we have a horrible ice flow.
we have to get the repair done soon or we're in trouble.

Early

It’s UEA—big conference for Utah teachers, school is out till Monday and Auni spent the night last night. She woke this morning to noises in the house. Auni woke at 4:30 am the usual time I wake up but lately I have been sleeping in until 7:00 or even 8:00 not today. Now, everyone is back asleep and I am up an I will be sleepy the rest of the day.

Dianne and I are hoping to vote today; see what this “early vote” thing is all about, get the deed done with and enjoy November 4th. I am too sleepy to write any more…maybe more later…maybe not.

More of the Same

Last night as I tried to watch TV our home was best with calls. I finally realized that it was not going to be a TV night devoted myself over to the phones calls, family phone calls. One of my kids is flying into the Salt Lake tonight and we of course are hosting a dinner at out house for gold Brooks our wayward son who has been "growing a business" in Washington State and is returning home for the first time since setting out to make his fortune a couple of years ago. Th call was a maintenance, letting us know when he is flying in, anmd where he is staying and what time is dinner. This call parcipitated to his sisiter and brother in law who were preparing much of the dinner, v So the first call was not bad but we essentially missed Chuck really no big deal--thank God for INTERNET TV where you can actually watch shows you missed, any time one desires. I actually just turned down the sound and basicailly followed the show.

The other call of the evening was much mlre truamatic, right after the eight o-clock hour, right after the begining of Heroes. My younger brother, Paul was on the line asking if I ha heard the news about Mom. I braced myself dor the worse: I knew she was eithe locked in near struggle for life, just holding on untill all the family could gather round as she let out the family mysteries or that Mom was already dead, the funeral was to be today or Wednesday anmd if we were coming could we bring some seven-up, funeral potatoe casserolle and a bag of jerky. I almost missed my dad's funeral because everyone thought someone else had called me. As it turned out Mom was still, indeed quie alive and doing well, so well, that she is moving back to Salt Lake the end of next week!!! Have the immediate family want to declare her incompentnent and the other half just says, let her go because she is going to do what she wants anyway, after all this is mom. Something is going on, and I am the last to know but that is cool. But it sounds to be that the deal has been made and details are all bnurt finished and Mom is South bound... again. This time to live with my mechanic and his wife( my cousins). The arrangement sounds dicey to me but they are all grown ups and family, I am just adopted and I wish them the best. there is a Rod Stewart song I wish I had access to which would make great background to this posting but I can't quite remember the song. All I know is I am loosing sleep...

Snow

So today I have to write, It’s Sunday the last day of my three day weekend and I have to log some creative home-time. Tomorrow, I have to really start putting together the` “e-newsletter”. This project is sitting on my chest like a Stephen King character. So, I need to do the newsletter, the broadcast and the year end report and still do my regular job of answering phones, meeting consumers as they wonder in, and mixing with staff. This is stupid. I am hoping I can limit my pieces to 500 words or so. I think the first edition is going to be somewhat limited: just enough to introduce the newsletter, the broadcast and concept; and if I can pull all that off I will be happy and impressed with myself. So if I don’t get to the articles for the newsletter I cannot really do anything else. I wish I would have done it yesterday

Snow came last night the first real snow of the season and already the snow is gone but the snow was falling with a vengeance when I got up round 7:00 this morning. I made coffee and turned on NPR and made Sunday sounds and enjoyed the morning. Dianne still would not be up for a couple of hours so I occupied my self with a little kitchen clean up and preparation for breakfast. We shopped yesterday and one of the items we purchased was day old cinnamon swirl bread a small loaf just the size for French toast. I cooked the whole loaf using just 5 eggs. I roused Dianne out of bed just as I was finishing the last two pieces of toast- I wanted her to enjoy her French toast , fresh and hot. I had kept the coffee hot. Sad, the snow is all but gone now—there are traces here and there, on the van in the crevices of tree limbs. It looks as if the front yard pants have all survived even the elephant ears. It may be just my imagination but everything outside, which is supposed to be green looks much greener and much more healthy. I am sure just a prelude to a “killer frost” which is just round the corner—typical.

Lee the Asian Direct TV installer finally finished the work yesterday afternoon with the installation of bright, shinny Direct TV, cable and specialized programming 24 hours a day. Lee is an interesting little guy, a person from Viet Nam, his English is a challenge for me to understand. I even hung up on him the first time he called the house to advise us he was ready to come over and do the installation. I thought he was a wrong number. Even in person it is hard to follow what he is saying but one can if you totally focus on him. But he did the job having to return to the house three separate times.

I have to be careful now! I can waste a lot of time watching the tube. However, I am intrigued there seems to be a lot of features, I have to learn, which will allow me to enjoy the shows I really am interested in anytime I desire. This could be too cool. Still could be dangerous to my already seemingly limited time constraints.

Connections

We are currently disconnected from the INTERNET. We are switching providers from a real dorkey system, hopefully to a provider we hope will give us much better service. Of course we are running into problems immediately. The last cable provider did such a squirrelly job of installation the Quest guy is just walking round the house scratching his head and marveling that what service we did get we got at all. Now, the Quest guy now, cannot even find a place to hook out house to the mainline, he has driven round the neighbor hood looking for the “signal”.

My buddy across the street: Dan, also works for Quest, as a lineman. I doubt he has anything to do with installations but when Marty, the install guy, started scratching his head and making sound like, ‘I cannot find, the signal,’ or some such stuff Dianne starts using the “Dan card”to the point of calling poor ?Dan, who is out in the field, way out in /west Jordan, doing who knows what on some pole comes on line, a little guarded and Dianne identifies herself, the guard comes almost all the way down when Dianne passes the phone off to Marty, who actually does know Dan. Dan sis still on “speaker “ and his voice has becomes cautious, not sure what is going on—like we’re asking him to fix a race or throw a fight. Luckily, he is really to far away to intervene but actually can give Marty some good ‘intel’ regarding local quest-line connections. This process is slow going and I can tell Marty has some time pressures on him but he is being patient with both of us as they search for the signal and then the password. Marty finally found the signal and then the two wrestled with the issue of not being able to upload, ‘Qwest’s’ own security package—which I am not too worried about—it seems there is some sort of blocker on the big computer system. Again, I am really not too worried about security issues and my systems and connections—Dianne is much more concerned so I guess we are going to have to figure something out. Mark A. and Jasmine are coming over this afternoon and mabe we can figure something out then.

Its way cold today, we have not really started using the furnace and I don’t think we intend to until we are driven by biter cold, in an effort tom save money. I don’t think this decision has anything to do with the “meltdown” we have been conserving all summer and it just makes sense we would keep conserving in the winter as well. We saved hundreds this summer by not running the air conditioner and sleeping with cool wet clothes over our heads. I guess we just do the opposite now till spring.

The Direct TV guy just arrived and barely speaks English, a cute little Asian guy who I hung up on this morning when he called to verify the appointment—Imcould not understand him and I thought he was a Spanish speaker with the wrong number, boy was I off.

Money For Nothing

I hate having to find a new address or find an address for the first time. If I have the time I will make an effort to leave early so I will be sure to be on time and not too stressed out and of course I want to accomplish this in daylight. Yesterday I had a lecture to give up at the University. I was contacted a month ago by an old friend and employer, who has now transitioned to the University as some sort of professor type and needed someone to address her graduate class. Disability Studies: Social Model: Individual Perspective of Disability essentially talk about disability and how, having a disability has impacted my life. Easy duty.

Our University like any major university is always in a flux of growth. I was somewhat familiar with the address the professor gave me and I of course down loaded a map from the INTERNET—which sort of gave me an idea of where I was supposed to be. Because of this presentation I drove into work today , so I loaded up in the van at 3:30 and drove up to the University( ten minutes East of my office) and promptly got lost. I was not as lost as I usually get—but when I get lost driving I have to do a lot of stopping, starting and turning round. Not only is there a lot of construction going on in section of the University but there is also tons of trees and brush and shrubbery in the area concealing any and everything! I pulled over and read the email again with directions and realized I was directly across the street from the Health Education building, so down to the “turnaround” switchback and get out of the van. I still had about three minutes, and when the elevator door open there was the proff , who had actually come down looking for me. She knew I would need some redirection of some kind.

I was supposed to be at the class at 4:30 and I basically made it on time. Disability Studies is a graduate class, I took provisions for 15 students and there actually only about 7-8 folks there and on is a someone from my office and the other is another guy in a wheelchair I have known for decades, a real super crip, at least this super crip actually has a job and works for a living. But still, I was not able to as radical as I usually am, but I radical enough—I ended up lecturing , non-stop for two hours before the professor sort of asked me to leave—but I just kept responding to questions. And telling “war stories” from My Life With Disability.

The professor walked me of the elevator and said I had done a good job, she judges how good a job by the length of time her students ask questions and seem interested. She also informed me that an honorarium also came with the job that she had neglected to tell me—so I guess I’ll claim these hours as vacation and enjoy the opportunity to get paid for talking about myself.

Short and Sweet

I have a few minutes before I take off for work--busy all day no time at the office right now. The boss is back today and I have to show some progress in key project which I believe I can. I will write more this weekend about the office stress and new projects I have been drug into but at the same time I am having some excitement and growth potential. More later...

Busy Days Busy Ways

All of the sudden things are getting super busy at the office. I am going to have to keep my head down and focus for a couple of days, no make that weeks if not months.

The cold came last night...

The cold came last night, not the bitter cold which is yet to come in another four to six weeks but the first killer cold, the cold which puts snow in the visible mountains from my front porch and the death sentence on the leaves of my trees and the flowers in my front yard garden.

Ani had been over since Friday night and we had been busy watching videos, the same videos we watch every weekend she stays: Shrek, Men in Black, Toy Story, Drum Line. Ani brought over a library book and she and Dianne worked at sawing though the volume in the evenings before she went to be. We also went out to Lowes for paint for the ramp, breakfast at Denny’s and finally to Smiths to do a bit of shopping. The cold fronts were moving in as we shopping bring cooler temperatures and rain, light at first then heavy as we finished up but being out was fun and somewhat invigorating as we were finally facing the end of summer. I had kept my eye on the news and the weather which was forecasting a monster storm which turned out to be light in comparison to the reports. But wet and cold enough to feel good to socked into the house, warm with cooking and videos and family life.

The summer lasted long this year, I noted, each day as I rolled down my ramp in the mornings on my way to work, or up in ramp in the evenings as I came home, The flower and the leaves seemed healthy and acted like they would round for ever. There is a huge tree I pass on my way to and from the train station whose leaves have yet to even begin to turn—we have yet to experience a killer frost. This week though, I think I will see the change begin. The yellows and golds will begin working their way in from the ends of the tree’s long branches and soon the leaves will fall or be tugged by the autumn winds now as the wind surly will.
I have really enjoyed Dianne’s flower garden in the front yard this year especially the elephant ears. I have loved this plant as it sprung up in the spring and took color and shape through out the summer. The elephant ears are much more hardy then I would have imagined surviving the hail and intense winds of a couple of storms which blew through in late July and August. I worried after the ears in late-august when we turned off the sprinklers for the year. The ears began to droop and took me a while to realize the droop was because they were no longer getting the moisture the plants needed. UI rushed out with little water and we had a little rain and they perked up a little. I noticed this morning when I` looked out the ears had regained their freshness and looking green and healthy. This early Fall water is but a short reprieve however. The snow on the mountains says it all. The frost will come rolling in with a vengeance later this week or next or at the latest the week after and the beautiful elephant ears will be gone and the growing season will finally be gone for this year. We’re going to dig up the bulbs and see if we can bring back the ears for next year. I hope we can and I hope I will be round to se them.

$6000!!!!!!

Wednesday I was called by my wheelchair sales guy, Brent, and he wanted to come by my office and show me a couple of wheelchairs which were in the category of chairs I had an interest I could not do it Wednesday but I knew I would be off work Friday so I had him set the display at my home at 4:00. This was a drag for me because it made me have to be sure home late in the afternoon, but Brent had arranged to have the Permobile rep in the area for that day and I did want to see these products. Remember I had pretty much decided to go with the Permobile Street and wanted to see one of these units. Then Last night as I was taking the train home I ran into my buddy, Andrew who drives a Permobile C500 which goes like a bat out of hell and is a massive front wheel-drive and really, is everything I wanted.
Scott was the Permobile rep and he got here right at four and began down loading the chair he was going to show. Scott is a nice guy, young but seems to know his business and informs me the Street actually no longer speeds up to 7.5 mph which I think I need but he can trick out the model to 6.5 mph which is slower then I want but considerable.
Brent finally shows up and we talk. I think I have mad up my mind, now I want a C500 with the whistles and bell, recline seat and elevator.
This chair is going to cost in the neighborhood of $30,000! My insurance will cover 80% which will be bout $24,000 leaving the $6,000 my responsibility: that’s a lot of tacos. At this point I don’t know how I am going to do $6000.00 but the lads did not seem to care right now. Brent measured me again and about different features and what I used a powerchair for in my day to day life. But in the back of my mind I keep thinking about the six grand and the fact non of the new chairs will do the coveted 7.5 mph. It seems the Permobile has made the decision to “top” the speed at 6.5 mph for liability issues which may not be a bad idea but I still want the speed. Then Scott suggests that perhaps he can scour the country and maybe out there somewhere is demo, an older model C500, which still has the older faster motors and I would have everything I want. Not only would I get the speed that I want but I would get a significant reduction in price since the model is older. I was delighted and gave Scott the go ahead and Brent finished up the measuring. I am still cautious and I doubt they will be able to find what I need. I am also concerned about the seating system. The seating system would be new and this be something is would have to get used to. I’ll just have to see what happens and hope my luck holds.
I hate change.

Personal Terror

As a person with a disability who is trying to age in place ,i.e. live independently at home, my home and maintain a job, a regular job working regular hours( 40) per week. One of my worst terror is that something might happen which would force me to loose some of the independence I have clung to over the years of my life. These last few weeks as I have, once again, reentered the medical arena I have been come keenly aware at how much these medical folk can have an impact on your life if you let them.
Yesterday, I went up to University Hospital to have a “Doppler” done on my leg. I have had some swelling and coloration on y lower leg for some time and Dianne was becoming quite worried, I finally called my primary care doc and she was also concerned and wanted me to come in for this Doppler which she was hoping would show if I had blood clots in the leg and make sure the veins were OK. I was encouraged and relieved when the doc reported that everything looked good, no clots and venous was OK but I needed to consider wearing ted hose or compression stockings!?!! Right now as I sit and type these words I am physically repelled at the thought of wearing compression stocks. It is not so much as having to wear the socks, as much as having to have someone else put these socks on and then take them off. This is one thing I know I cannot do my self do to he strong elastics used in the socks for the very purpose of pushing the blood back to the heart. My doc also ants me to wear them 23 hours a day( one our they can be off while I do my hygiene routine) WRONG! I hate to see myself as the non-compliant patient but that is what I m becoming. I still have not taken the pills she prescribed, water pills, which are supposed to rid my body of extra water=means trips to the bathroom. Hey, I work for a living, I don’t have time to be hold up in the john every thirty minutes and I sleep nude, thank you very much, I don’t need rubber band socks putting the squeeze all through the night. But again the biggest fear is not being able to do these things by myself, independently. I am up at 4:30 am and have to be dressed, fed and out of the house by 5:45 am –I don’t have time compression socks! But this all whispers to me “you are getting old, your wearing out, you have to have someone help you.
I just struggled in the bathroom trying to get my pants back up after using the toilet—I rarely do use any toilet but my home facilities but every once in a while I am on my own out in the world. It took me an hour from start to finish but I eventually got my pants back up and myself half way presentable just barely and should do until I can get home. I am always surprised and pleased I can still these activities of daily living by my self but the day is coming when I won’t be able to and that day terrifies me.

Picking Up The Slack

Today has been a perfect Fall day, blue skies with lots of clouds which may have threatened rain and thunder storms and the temperatures skyrocketed into the high 80’s, a perfect day to visit with my next door neighbor, Al. I have been neglecting Al for the past couple of weeks—so reason specifically except I have been busy. But I found out yesterday that one of his friends, a fairly close friend died. The friends name was Parley. I new him but not well. Actually yesterday, I tied to visit with Al but he disappeared in the afternoon. I looked all over the neighborhood for him and was a bit concerned. But turns out Al had gone out for a walk and turned in a direction I had not anticipated. But he was OK.

Parley used to live in the neighborhood and he and Al had been friends for some time, I was the new comer 16 17 years ago and had never got to know Parley. Parley often came over and joined Al and I when Al and I would be out by Al’s back steps visiting. I sort of felt Parley was muscling in on our conversation. Parley lived up round the corner part of the old guard. Following Parley’s retirement from Quest he purchased a couple of apartments in the neighborhood and kept close vigil on his “units” as Parley liked to call them. Five or six years ago he had enough of the “neighborhood” and the landlord moved South to Alpine, a community in another, more conservative county about forty-five minutes away. Parley continued to keep a pretty high level of visibility in the neighborhood. Parley had the money to have a person mow the lawn, provide upkeep and generally keep an eye on his property but Parley elected to do this himself dropping by once or twice a week to mow the law and do upkeep. Like I said, Parley was an OK guy, little more conservative for my taste but he always had interesting stories about the traumas and terrors of his property and tenants. It was always entertaining to hear views of renting from the landlords perspective. Parley did not die a natural death, cancer or old age. He died from an accident semi-traumatic but I guess traumatic enough to do the job.

Parley was just twenty years older then me, 77, not young but not as old as he could have been. Parley had a huge family who all took part in the funeral. I asked Al, if the funeral was as long as conference(two hours). Al said “no” just a lot of family talks and family singing. I have attached a hot link to his obituary and that is a nine hundred dollar obit! I am sorry Parley is gone—not that I will miss him but I know that both my neighbors well especially Albert. Al is a nice, quiet and shy. He does not have a lot of truly personal friends Parley was one of those. I think Albert is going to miss Parley a great deal…I guess its up to me to pick up the slack,

conspiracy and collusion

Dianne and I saddled up and drove to University Hospital at 2:00 pm to meet with Brent the sales guy and Randy my PT and seating specialist to begin the process of ordering my new power chair. I used to go to all these event by myself but lately I have started inviting Dianne to accompany me not only as my wife but as my Medical Advocate(MA). I have been pleasantly surprised at how effective Dianne has been as my MA, particularly how through and effective she is in developing my case.
We got to the rehab unit right on time and Brent and Randy was there—

Friday afternoons are typically slow on rehab units but I was surprised to see how many people and how much activity was going on when we checked in. There were in PT students still hanging out following Randy around like adoring fans of their rock star. I was kind of surprised to note that Randy had already softened Brent the durable medical guy, up as to my desire to consider a completely new chair as opposed to fixing up my current Pride product, the Quantum, which I have liked but goes just way to slow to have to endure for another five years if I do not have to. Randy had informed me that that the chair I want, the Permobile Street Corpse/Urban Challenger, which costs way too much but does not yield the commissions that durable medical sales guys like. But Brent was OK with my decision. And sounded as if he was hell bent to push my case.

So we spent the next hour and half getting measured, talking about my needs, what I was able to do physically and how such a chair as the urban challenger would allow me to meet my vocational and social goals. This was a look on the “inside” for me, these two guys were actually figuring out how they could manipulate the system to achieve my goal getting the equipment I think I need.
I was pleased and impressed at how aggressive and effectively Dianne presented my case of the wife of a person who needed—the best powerchair on the market today. How I needed a chair which could speedily get me back and forth to my train station safely and dependably. How I used the powerchair every day and day out rain and snow light and dark. How even if the cost to us is going to be astronomical, even after insurance intervention, we will just figure out a way to pay the cost for years to come. I am not sure how we will do this but I have to have faith.

So now everyone has colluded: the PT, the durable medical provider, the MA and the crip, this is conspiracy of the highest caliber. Now Randy , the PT, is going to attempt to write the “need” letter just the right way, which my Katia, my medical provider, will sign and present to the insurance folk which will , hopefully, get the ball rolling. I am thinking my portion of responsibility is going to be between 8,0000 and 10,000 dollars!! This is not right but just the way it is. So, I have been measured and almost authorized now the real work begins… conspiracy and collusion

Power Chair and Tigers

Ok if you have been reading this blog you know I am getting ready to consider
getting another wheelchair, a power chair, hopefully more powerful then anyone I
have had up to this time. In fact, I am meeting with Brent, the guy from my
durable medical equipment provider, tomorrow at 3:00 pm at the outpatient rehab
facility I frequent. I set this appointment earlier in the week to make sure the
appointment fell on my day off. I spoke with my physical therapist(PT) Randy,
who gave me some options and specifically a specific kind of wheelchair which
Randy feels will best meet my needs. The only problem is the chair he specified
is a super expensive, top of the line, hard to convince insurance companies of
the need for such a chair. This chair would be a high performance chair made
in another country with superb quality and a two year warranty. I am talking
about a chair which could cost $15,000 or easily more. This chair would recline,
raise up four inches, and best of all travel two and one half miles faster then my present chair—which would be wonderful.

My PT also kinda of warned me that the shop Brent works for is sort of committed
to the power chair I am currently piloting which would acceptable, if I could
get a chair which would be faster then the chair I have had. I sense things are
going to get sticky before things get smooth…there are tigers across the street!

This post was supposed to have been entered Thursday!

Better Homes and Gardens

Things were slow round our house on Sunday morning and Anakah had spent the night. The morning was beautiful, as any last Sunday morning of summer should be: bright sunshine, warm temperatures and the smell of bacon, eggs and grits still heavy on the air. Anakah was using her scooter but was becoming more and more bored with nothing to do. I was no feeling as good as I could and did not feel like gong up to State street to the Beans and Brew where we had gone a number of Sunday mornings add to the fact that my power chair is becoming more and more fragile and I guess I don’t want to stress the chair out anymore then I have too. So I was happy just to sit out on my ramp and read my latest Stephen King and enjoy my last Sunday morning of Summer.

Saturday night Anakah \and I had been cruising the neighborhood, Anakah on her foot scooter and me in my power wheelchair. We had gone all over our neighborhood and somewhere in out journey Anakah had lost a bolt off her chair, the bolt which held the handle bars in place. I was impressed that she had heard the metal parts hit the road when they fell and she was able to retrieve most of the bracket but was not able to find the nut.
The following morning Anakah was focused on finding the bolt and had talked her grandmother into waging a search for said bolt. I knew immediately this was going to be a futile waist of time but the three of us set out trying retracing out steps not finding the needed hardware but leaves , flowers, lost trinkets and I even found a pair of butter fly wings. Gruesome as this sound pinned to the pavement where the vehicle has some how run over the little beat but lat the wings, mostly intact. It was about then I realized that Dianne was searching for Fairy materials. Dianne and Anakah were carrying wicker baskets and putting all the treasures we found in the basket and when we got home she ad Anakah set to building a small house in the garden just right for fairies. Of coursed the building of a fairy house was a Sunday Silly, something done on Sunday just for fun. When we got back from the search I returned to my Stephen King and later when I poked my head out of my book the two had completed their work and I was asked to inspect their labors. The fairy quarters was a work of art. I now you cannot see much from the image I have posted as is but if you were to click on image and see the image I its fullness and hugeness. Look round the house, see the toad stool? The butterfly wings are on the toad stool. The mini baskets are tooth fairy baskets. There is a quarter in on and a penny in the other. The roof is woven plant leaves and the pod count as lanterns.. Th real magic of the fairy house is the idea and structure kept Anakah busy for am ood part of the remainder of the day. Magic!

Decisions

I am loosing my motors! I found the grim news on Friday when I checked into the wheelchair repair shop to see my electric charges were seeming to deplete way to quick. I charge my batteries every night, I have to, if I do not I am afraid I will be stranded somewhere the next day. I have an “power” indicator light which works through colors green to yellow to red and finally blinking red which means I had better charge soon or I will stop in my tracks—which is not a good thing. So, now when I leave for work with a full charge I am way into the yellow by mid morning and a b linking red light my lunch time if I choose to range at all. Luckily I have charger at the office I often plug into and at least keep my power levels up.

So I go to Magic Rest, my wheelchair place, and the bad news is the motors are going and because the motors are “going” they tend to draw more power from my batteries and show that I need a charge. Though no prices were quoted, I know if I have the motors replaced it is going to cost me upwards of $1000.00 or more and there is a strong chance the costs might be covered by my insurance this good, but this is also bad. I am being pointed in the direction of investing in a new chair entirely especially since the battle of the butt sore. The talk now is to maybe consider a power chair which actually reclines that also elevates my feet! This would take to weight off my butt and hopefully cut down on the probability of pressure sores. But I am being told if I were to invest in the motors the insurance people would be less likely to justify the expense of a new chair after replacing the motors. The Magic Rest shop tech also indicated that right now, with my chair acting so odd and the motors beginning to fail that if the insurance folk would spring for a major chair up grade it would be now. But even if the insurance people go for the upgrade they will only cover the usual 70 percent leaving the 30 percent to me which could 3000-5000.00 or maybe more. Some of these chair cost up to 30,000 or more. So, I don’t know what to do. There may be a third option. The re utilization program I am part of has many motors and I am sure I could get them at a pretty good price. Hum what to do. One of my biggest concerns is that the motors will fail on my way to or home from work or somewhere out on the train line. Many things to think about.

GD2 was over this week with her dad to mow my yard. I was able to get a couple of images of Jasmine as she flitted round the ramp and yard. I am going to follow up with GD3 soon. I noticed some new images on her mom’s Myspace account. I’ll harvest an image of Riley soon They are ally beauties.