"There's a Coach Coming In..."

No sooner had I saved yesterdays post that my phone rang and it was Colorado Kendra the “shrink wrapped bus lady” to let me know that the drive had just lent Reno and he was Utah bound. This was great word for me since I was beginning to doubt the RTF people were actually going to show. The call was very reliving. However the calm of confirmation was soon replaced with the stress of “ THIS THING IA REALLY GOING TO HAPPEN!!” I received a number of calls from participants asking me how I wanted their presentation tailored. I just gave them the latitude to do what ever they wanted. Then a couple of the providers called and locked in their donations—which is also cool, now I am just sitting back and waiting for the bus to check in.—We are going to have a party.

When the coach does check in I want to see the images of the exhibit to make sure the ‘hall’ we have provided is large enough to accommodate images in the exhibit. Each item in the exhibit is supposed to be around seven feet high and there are about eight items in the exhibit,. We only have 8 foot ceiling in the office suites and I am concerned the ceiling may not be high enough. If I have to default to a ‘Plan B’ scenario I think we could stick these images up in the front hall way for the after noon. I thought maybe the ceilings might be higher on the second floor and I just ‘beamed’ up there to check and I think the second floor ceilings are not as high as these ground floors. If the ceiling dose pose an issue then we will just move the whole mess outside. The forecast calls for clear skies and heat which ok. I just do not know if the exhibit can tolerate being out side.

The next thing I am grinding my teeth about is the response from the media. I have contacted the electronic and print media twice. I just did not have time to hit the radio stations—I kinda wished I had but all these media forms make getting hold of the next to impossible any more. No one has the balls anymore to publish a working phone number—they just have one of those electronic documents one has to fill out and one never knows where the document goes after you hit ‘send’. Does anyone really ever pick these documents up? You just never know. In the old days you could at least speak to the Assignment Editor and know that your information was received by someone, now days you just have to hope.

I have promised myself I am not going to get ‘wacked’ over this project—if anything I plan to have fun, I scheduled this event for late Friday afternoon for this very reason. Plus my boss is gone, in fact I AM the boss—so aside from showing up drunk or not at all I cannot see what can go wrong. At this juncture everything is logistics. I had asked the pop guy to bring his stuff over this afternoon but I am not seeing Bill anywhere yet. We have a strong three hours tomorrow morning before the event I supposed to take off. No sweat!

CRAP

Crap.Crap,Crap I realized with a start that I still had not heard back from the Deaf community regarding there being any of their consumers at the RTF program day after tomorrow!!! I actually tried to get hold of the Deaf center last week before the holiday but could not get through. All I got was the tedious noise of the Deaf Center TDD trying to access our TDD( which we do not have). I got this same noise all week until just few minutes ago when I finally got a voice. But the one person I needed was not in an I am now waiting for a call now I know will not come till tomorrow.

What I need to know is are any of their people are planning on coming to the event so I can get the sign language interpreter which will cost me $90.00 an hour. So I plan to only pay for interpreters during the press conference portion or the first hour then the deaf folk are on their own. I had been doing so well too.

So far I have about too hundred mini sandwiches coming from Subway and drinks for about 100 people and I also have bags of ice coming. Long range weather indicators re calling for clear and hot (85 – 90 degrees) . I informed the speakers of something to speak about, the ones who have had trouble finding something to speak about. I am finding that the Americans with Disabilities Act is still a pretty nebulous document and many people with disabilities who should know about the important dates. The date of the signing if the ADA is July 26, 1990 during the reign Of JWB the first! I know few AB’s will know think but come you crips we all should hold this date hallowed and dear to our hearts. Someone told me today, someone with a disability,” wasn’t it some time in June of 1976—I think she was still feeling the flush of the bi-centennial celebrations, and yes it would have been nice and fitting had the ADA been signed the it wasn’t to be for another 14 years.

So where is the damn bus! No phone calls or email responses. Just my luck the bus is lying on it’s side just outside of Winnemucca Nevada in a waterless gully and the wind covering it with tumbleweeds not to be seen again this decade. The shrink wrap will eventually disintegrate and the sides will rust and the only thing left will be the undying legend of how meadowlarkmark was stud up at the press conference—like a bride without a groom I was without an ADA bus or a photographic exhibit. I promised these people a shrink wrapped ADA bus and if they don’t get shrink wrapped ADA bus there will surely be Hell to pay.

Short Week

This a short week, a holiday week, with a party on the end of that week and I am in charge!! I think I am ready. I had a staff meeting this morning—since I am in charge—and was able to pull some last minute things together which I thought was very helpful. I know I am making all kinds and blunders and just wonder how the press conference will end. I have the speakers set up, balloons and foods are ordered and I have just the things I cannot fix until the people and the bus shows up. The bus could be in the valley even as I write this. The vehicle is supposed to be here for three or four days and we plan to use the whole Road to Freedom Tour for just four hours.

I am getting nervous as this day closes in. I have put in a call for Kendra who is sort of Home base for the Road To Freedom and I am not getting anyone respond to my call. The last time I spoke with Kendra she was getting very close to delivering baby and Jim Ward the tour bus driver has not yet rolled into Salt Lake nor have I heard from him. I suppose if Kendra is down for the count they( the Road to Freedom)RTF has some sort of contingency plan. I got an email this morning advising me the good senator (Hatch) was not going to be able to make it. I already knew this we were just requesting anyone from his office to smile and say a few words but looks like their office is going to be a total washout. Typical.

So I am down to three speakers and possibly an open mike if I can find a couple of ringers who will give feed back on what the ADA means to them, or has mend to them over the years.

The INTERNET for all of its neatness is sure frustrating at times. The net works well for keeping people from being contacted when these folks do not ant to be contacted but when they need to be contacted. I am at the point when I need to start notifying the press i.e. press releases—I have just sent the of the attached press release to different stations and news papers and we’ll have to see who bites. I wish I had a better list to send this item down but we’ll have to do with what we have got now. So does it sound like I am getting a little edgy? Well, I am. I am sure this blog is going to be a hoot for the rest of the week. Tell your friends.

Holiday Coffee

I made holiday coffee this morning. Holiday coffee is an artifact from our early married days. I was not a big coffee drinker then. I usually kept a small bottle instant in the house for days I had to stay up late and work or for those other nights when I had stayed up late and had to work the next day. I loved the smell of coffee in the house and perhaps that was another reason I kept coffee in house. I had never learned to drink coffee though. There was never coffee in my home growing up—the beverage was taboo and the only time I was ever round coffee was at my best friend, John's. When we spent thew night at the Cantrells I always woke to the smell of fresh coffee.

Dianne and the kids moved out to Utah the Fall after we met. We were fortunate enough to find an apartment a half a block away from my own apartment. Dianne, Bridget and Brooks stuffed what the could in a huge moving company van and the necessities in their little BMW and headed West. Dianne did drink coffee and she made her coffee daily in one of those aluminum coffee pots on the stove. I usually had breakfast with the family of Saturday and Sunday mornings when I would roll over to their apartment early and Dianne always made the best coffee with milk and sugar. I did not see Dianne and the kids ,during the week until in the evenings, we we usually shared dinner. I had never had coffee with milk and sugar and these ingredients changed and my world.

I am not sure which holiday we started making our holiday coffee could have been Columbus, Veterans Day or even Thanksgiving but by Christmas I know we were having a special coffee. Dianne used just coffee and a lot of sweetened condensed milk and the coffee was great! Holiday coffee was not a big deal but a special deal. A time when life slowed down and we enjoyed the moments of being together. I have really learned to enjoy good coffee; over the ensuing years I have developed a taste for specific brands and coffee flavors. I now prefer to grind my own coffee purchasing bean coffee for home grind. I have the coffee shop, not far from my office, specialty flavors to make work my work day tolerable. I can get away with having good coffee at work since I am one of the only folks in the office who drinks coffee. My work mates are great putting up with my mixing and experimenting with all kinds of coffee. We rarely make our Holiday coffee with sweetened condensed milk any longer preferring just plain canned milk or one percent and some sort of sugar substitute. The flavor is always special and the moments cherished.

The kids are grown and gone now but I look forward to each and every holiday morning when things slow down just a bit and we turn on NPR and brew a cup of Holiday coffee.

DIESLING

OTR DIESLING OUTSIDE MY WINDOW

A week from today the first event of my “Triple Crown Summer” well be behind me and I can focus on the next event the family reunion. I should have done more on this project but everything in its time. I was talking to someone at lunch and mentioned that I had just sent the information out to just who I have email address for which is pretty much the immediate family. This thought has got me thinking maybe that IS all I want at the event, just immediate family. Maybe I just did not want to spend the money of the postage and I don’t think cost is the reason. I think stamps like gas are high but if you want to send something you will cough up the two cents and send the document and even if the mail out to extended family would be just a dollar over last years price. Like buying gas, the cost is high but you just buy the gas and get on your way. So I may still get an announcement out but that will only give a month at the most of lead time. Mari Anne the office manager went to the post office a few minutes ago . I gave her a dollar ad she brought me back fifty 2 centers and these stamps should more then take care of older stamps I have laying round the house.

I have ninety minutes left in my day and I am just answering the phone. I should be working on minutes of two meetings and at least straightening out my desk before I leave for this long holiday weekend. The weather has finally turned round and the warm temperatures are back the long weekend holds promise. I am sure we will burn through the three days fast but free here the days look long and leisurely. I have a great book to finish and there are actually some good flicks at the free movie place and I can get to my wood shop and I have promised my self I am going to burn some meat one way or the other. I’ll try to take some image to chronicle the events probably more images of food.

The afternoon rumbles have began as the “home buses” pull in to wait for the evening commuters. Three or four huge over the road(OTR)s vehicles sit out side my window and “diesel” till the crowds show up and board. When those guys roll in I know the time for going home draws neigh.

Another hour and I am on my way home. I need to check round the office to be sure I have coffee grounds dumped and the new coffee make turned off and to do the door check to make sure tings are locked and secure. Aren’t I JUST CUTE, the way I act responsible when I am left in charge? I actually at least one of the staff kind of resents the fact that I keep being left in charge when the boss leaves. She keeps zinging me with these little passive aggressive comments highlighting the fact that I am the chosen one. Oh well, that’s what happens when you consistently show up for work.

Beautiful Dreamer

So now I am dreaming about the Road to Freedom event! Road to Freedom is all that filled my head while I slept last night. I remember waking once about 2:45 from a dream about ow the program weas supposed to go. I am supposed to ‘MC’ this event and I have never “ MC”ed anything before in my life and I don’t do well in front of crowds so I am sure my unconscious is running terrorized through it self making up one scenario after another and throwing these shorts up on the wall of the screening room of my brain. One benefit I realized from my night of terror is that I had better have a program if it my job to introduce these folks. Then I realized I possible I should have an program to hand out to the press and members of the audience. Maybe something with images of the speakers…Hum?. So you can see how my brain begins churning once I start thinking. Thankfully I was able nip most of the angst in the bud and was able to get a couple more hours sleep, if fit full before I had to get up. actually I am feeling a little anxious right now contemplating this event. So, I am not sure how effective I will be shutting down runaway thought processes as the days and nights get closer.

I am not a very political guy—I am not clever the way a political guy have to be to play the games demanded of the politician. As I was wondering how to draft up this program for next Friday I think of who I have and what order they should be. I realized that I have four speakers and if they all show up and if they all take ten minutes that is 40 minutes which is almost an hour which I am sure is way longer then any attention span of media representatives in the audience, then to make matters worse I got a call when I was away at my meeting this morning from the local ‘Interpreters are Us’ which can only mean they want to rent one of their interpreters. It turns out they do not have interpreters to rent. They wanted to pass out information at the event about their program great! Now I have opened the “can of worms” how do I deal with the deaf community?. Easy, hire an interpreter for an hour for the first hour of the event, when we actually have content to interpret $45.00 an hour I think we can do that—it’s the right thing to do.

Even though I have sworn just have fun with this event and not let the event stress me out and I am trying not to let this event stress me out I feel it beginning top do so. I have a queer little feeling high in my chest making me feel just a little bit anxious. The feeling in my chest is quick to quiver all over my body and disappear if I should concentrate on the feeling too much, sort of like trying to attend to a dream just on the other side of consciousness: the dream disappears each time you release the here and now and try to focus on the it.

Tennis Anyone??

Jennifer A. is the women who is bringing the Russians over later this Summer that I have been fretting over so much because of the part I am playing in the Russians who use wheelchairs for mobility visit. Jennifer has been gone for the past two weeks and I have been using this two week time to focus on my part on the Road to Freedom Tour. But Jennifer is back from S. America and so is her focus on the August visit.

Remember she is trying to sponsor at least two paraplegics to visit the US and more specifically Salt Lake City Utah! One of the travelers for sure is a table tennis champion, Nadezhda Pushpasheva. I don’t know if just for her state or for all of the Russians. The only Russaian crip I know is the one I have been corresponding with off and on and he may also be coming. This guy has not Impressed me too much over the years. He seems to whine a lot.

Jennifer has gotten part of their visit roughed out a couple meetings with various State officials, director of VR. We have a couple of dinner set up and a concert or two. Jennifer has informed me that we have at least thee more days of time o fill up. The Russians have informed Jennifer that what they (the Russians) would like to do is ‘shadow’ a person with a disability who is working, for a day and just see how the American crips do their day. Jennifer even started suggesting they stay with me to really see how a real Utah disabled guy does it. I sort of hoped the Russian in the house issue had passed but I guess not. I still get to grapple with this issue.

I did suggest one idea which , I think, intrigued, Jennifer and that is to take the Russians to one of the Parks where the local paras play tennis. The locals “wheelchair boys of summer” play tennis a couple nights a week all summer long. If I did it right and we could find an outlet to donate a tennis racket to these folks, Russian, they could play too, talk about good will international wheelchair tennis could be huge. I wonder f the local paras could opr wood return the favor—be up for a couple of games of table tennis at least with Nadezhda. I don’t think our boys would play because table tennis sort of looks like one of those things which have been modified to the disability. You know—obviously these blokes cannot play tennis so lets let them play table tennis…it sort of like tennis and you can play the game sitting down. Our paras or US paras or Utah paras would never, never tolerate paternalism. Table tennis would violate their fragile concept of the universe of not really being disabled just sitting down. They grabbed their tennis rackets and played and played the game like anyone else except jumping over the net part. And if I really want to mess the Russians up I ‘ll did up a couple of quads and get a good game or murderball going.

Freedom

“24” ended last night for the year—thank goodness “24” ad a couple of series I have become addicted to are finally coming to an end and I should be able to free up four to six hours during my week when I can read, write ,work in the wood shop or visit my neighbor Albert. I could even use this time to play with my cell phone calling people near and dear.

There is still light outside when I go to bed now and will continue so for the next two months at least. The noise of kids and birds still fill my bedroom as I nod off to sleep. These enoviromentals are ok, the enviromentals don’t keep me up or anything like that—in fact this form neighborhood white noise may even help nod off. We have the windows open now and the crickets croak through the night, the train “screeches and whooshes” by in back of the house till way after I fall asleep. Only once or twice during the week do I wake to the sounds of a real train screaming its whistle loud enough to hurt my ears and often made me wonder if I was going to roll out of bed like a cartoon, at two fifteen in the morning.

I Have noticed the Fox and ABC,for two, are beginning their summer replacements this week, “Dancing with the Stars” and something about movie making—which actually looks entertaining. I have stayed away from any of this summer programming. Without even thinking about what I was doing I could get hooked into evening television and shoot my summer.

Tomorrow the boss is leaving for two weeks and once again she is leaving me in charge of the office until she returns in

Bad Day????

I am having one of those days, a day where no one had better cross my path the wrong way. I don’t know what is making me feel this way, maybe the clouds or the rain which is drizzling or maybe the 55 degree temperature after a week of 80’s. I noticed the feeling of irascibility beginning to creep up in staff meeting which would never end. I was taking opposition to about everything which was being said, which was just plain stupid—I was even beginning to challenge my boss which is VER stupid indeed. The meeting finally got out at a quarter to twelve and I had a pile of calls to return.

It’s a Monday and Mondays are often heavy call day. People have traumas over the weekending and cannot wait for government type to get back into their offices. A call came in while in the midst of returning my calls. Actually I had a flurry of calls come in while a call I was working begin to go bad. I am sure the reason for the going down hill was me. I just could not disengage my negative feelings. Then another call came in while I was trying to stabilize the current call and somehow I dropped the call entirely. The guy called back and was ‘hot’ and Marrianne fielded the call and tried to diffuse the call. I don’t know how well Marrianne

did and did call the guy as soon as I had spoken with Marrianne and she had briefed me on her actions. I called my problem back but just got the fellows answering machine. I left a message and I’ll try one or two more times to try to get on better terms and see if I an assist the fellow.

The guy has a kid with disability and said he wanted to know about programs for the child then proceeded to want services for meeting his bills: utility, mortgage etc. I guess I just got pissed because I was trying to figure out how to answer the first question and he was really asking another question and basically using he child as the reason. I think I also was dealing with this weird emotional mine field I seem to be wandering through. This guy lives in one of he wealthiest counties in the State…and I am sure he is experiencing some very real emotional and financial stresses. I just need to wrestle down whatever emotional goblins, which seem to be loose and pull them under control.

Saturday the micro-wave stopped working and the first day to really try to replace the unit was yesterday. We stopped by our local Sears yesterday after noon an promptly found the micro-wave we wanted but when we went to purchase the unit they did not have the microwave just the floor model and they would not sell the floor model “company Rules”. We had major negations with the Sears folks who wanted to order the item in and would have the unit for us by Friday. However, we could not wait till Friday. I need the ‘nuker’ for my morning burrito. Long story short we had to go to another store to collect the microwave but we got it. It took both of us to get then bugger in the house. We finally got the microwave separated from the box and set up the cabinet when I started for the old micro to remove it I saw a small blue dot flashing. This blue dot was not there before an I hit a few buttons and the old microwave flashed to life. So now we have two.

Open For Business

Dianne and Auni have been busy all day making necklaces from a pile of polished stones which have kicking round the house for years. I do not know where Dianne got the idea but has been keeping the two occupied all afternoon. Auni found a box in the garbage at a store they were at earlier in the day brought the box home and wrote sign on it and went to work. I have to admit I was a bit surprised when no longer then 5 minutes had passed when an a SUV stopped and two guys got out and bout two necklaces for five dollars. The left her with a dollar tip.

Last week she made over twenty dollars selling canned pop in her neighborhood. Right now she has sold $18.00 worth of product. This girl has a knack for business. She will go far.

Friday Night Delights

The afternoon creeps toward 5:00. I SIT IN MY “Window on the

West” watching the flow of traffic and wondering “where all these people are going? The same way I wonder what all these people are doing up late when I have had chance to cross a bridge, not far from my home, which spans an Interstate. 1,2,3 three in the morning and the Interstate is pretty well packed. “zoom, zoom, zoom” all day and all night people are hurrying to get where they are going and rarely, it looks, ever getting there. Like yesterday afternoon I had my monthly Housing Non-profit Corp meeting. I did not bring my van in because the driver’s seat is acting up and I do not wish to be trapped in the van. So all I had was my power chair and I took off for my meeting with a little less then seven power lights showing. I went to the wrong address at first eroding my power supply to five lights brown and red. By the time I backtracked and got to my meeting I was down into the red zone—just three lights. By the time I got done with the meeting and back to the train I was on two lights. I cross ed Interstate 15 on my way home from the train station. I stopped in the middle of the bridge and just watched cars pass beneath me for a minute or two wondering if I have enough “juice” to make it home and wished I had all these vehicles power.

Its Friday night and Anakah is over for the weekend, ALL weekend! We just came home from the obligatory dinner at KFC and Dianne and Anakah are sequestered out on the deck doing grandmother granddaughter stuff: Anakah setting up her make believe kitchen and grandmother letter Anakah do what ever Anakah wants. Keeps them busy and out of my hair. Its nice tonight, clear and still in the low eighties—I think I'll read.

Moths

We have moths! There I have said it, WE have moths. The moths are small and I think feed off flour products of some sort. There used to be just a few flying laizily in the air of the front room drifting in front of the TV screen now and then. But in the past few weeks something has happened and their numbers are growing at what seems an exponential rate! When the little buggers choose to take flight and they take flight all at once the room’s air becomes littered with these little mothy fliers. These moths just sort of scamper through the air, they do not zip or flit just hover. If you leave a drink out, uncovered for any length of time one can be-assured that soon the surface of their beverage will soon be littered with floaters.

We have lived with this vexation for more then a year now but never have the insects been this bad. I have been leaving the doors to the house open in hopes that little beggars well fly out and leave us be but that has not happened yet. The other option we have yet to consider is the “bug bomb” approach…empting a can of

One Down and So Much More

My board meeting went off much better then I anticipated the meeting would. The meeting was not that well attended but that is ok since I just have to show I have had a meeting I am OK with small attendances. Small as the meeting was I feel great relief to have the meeting behind me.

I zoomed right from the Board meeting to my meeting with the IOTI Steering Council, for which I spent my weekend reading and grading grants. This is an easier meeting except I am Vice Chair and I often have to take charge of the meeting when the chair person is gone. The chair of this committee is also Chair of the University program which oversees this program so whenever a grant which is going to be discussed by the Committee is written by her or one of the people in her program the Chair has to leave the room and I then have to talk over the meeting and review the grant. I execute this task much better then I used to but I am still pretty rough round the edges. The best part of this meeting is the University feed us cold sandwiched and cokes but it’s a lunch I don’t have to purchase and the sandwiches are good.

So really with these two items behind me. I am experiencing some relief as I launch into the Road To Freedom Tour(RTF). We had a team meeting to discuss what needed to be done in the next two weeks. We need to just get speakers lined up and committed and the community outreach to bring in as many consumers as we can—we must create the illusion of great interest and participation. Smoke and mirrors if you well. Even though the “window” is closing fast I feel we can do what we have to do with the time I have remaining. Then I just have to get the Russian tour set up. The Russian tour is not till the first week of August so I have an illusion of time to bring the events of this project. The Russian project has not yet begun to affect my sleep patterns.

I am getting a premonition that the next set of mechanical maladies is about to hit. Last night when I pulled into the driveway of my house I went to actuate my drivers seat and the seat was unresponsive: the seat would not slide back on its track as it is supposed to. I finally fiddled with the switches that the chair would just barely move. I bet it took me nearly ten minutes to travel the 18 inches on the track to where I could swivel and access my power chair! I am afraid the seat will stop working completely and if that should happen while I am sitting in the chair in its lowest position I am stuck. Last night I should have just driven the vehicle over to Mobility Solutions and either had them find the problem then and there and do the repair or just dropped the van off and “trained” home. Alas, I was too tired. I just realized that tomorrow afternoon I have a housing meeting over on 200nd

East and 800 South. I guess I will be the streets tomorrow. But, I have noticed that my power chair is beginning to shut down when I am just “zooming” more and more. Used to think I would accidentally hit the “off” switch with my hand s I bounced on my ride but the more this happens the more I am seeing this happen for no apparent reason. I am sensing a “mechanical electrical” storm is lurking on my horizon.

Just Have Fun!

I spent all day yesterday trying to find data that I know that I have some where in my office. Why did I not launch this search earlier last week or even last month? I am so disorganized. I hate this part of my job. I have never been a competent filer.

A New Day!

Advisory board today then IOTI and when I woke this morning or sometime during a night of very little sleep, I realized that the Department of Education will not work for the Freedom Tour. We have no place to set up the display. I may have to see about the Buffmire Building again. I really am uncomfortable with this place too; the building is so far out of th way but I would have a board room, at least to set up the display. Two weeks to go, I hardly have a wink of time. So much to do---I am floundering.

Claire continues to encourage me in all my projects especially Access Utah Network. Claire says “Just have fun”a and this morning I figured why not? At least work might be a little less stressful.

Happy Mothers Day

Weekends go so fast its just not fair gut who said life is fair. Its been a good weekend though even though I spent it reading grants and doing Mothers Day stuff. We stayed up too late watching videos and sleeping in way too long and getting absolutely nothing done round the house except enjoying the doglessness.

We did Mothers Day at Bridge and Gabe's where they made coconut shrimp which was excellent. Dianne spent time with Aunakah and was able to reconnect with Bridget which was great. We spent a couple hours round the dining room table talking about her new job, which happens to be back downtown which means we can have lunches again. Then we talked about my job and the pressures I am sensing, which I have recently written about. I was quietly amazed at how I was able to open up and discuss some of the issues I am am sensing in my work place. We also discussed various TV shows we are following following right now and the time with Bridge was fun and made me miss spending time with her. We exchanged emails and will try to keep in better contact. Keeping in contact in a city the size of Salt Lake should not be that difficult.

I called my mom when we got home, a few minutes ago. Mom sounds great but tired. She had spent the afternoon at a picnic my brother hosted, outside fresh air and all that good stuff. She had heard from a couple of the kids who are out of state and had had a good day. The others she had not heard from I guess she writes off and accepts. Mom went to church earlier in the day so she had a long day. We cut the call short when we both started yawning and that was fine. I continue to write her once a week an she seems to enjoy the letters best. I think letters are the best way of accepting families on your own terms. Mom seems comfortable, safe and I sense surrounded by people who love her and have a chance to spend regular time with her, who have not had the chance to do so for some time.

What feels as too soon I am diving into my new week tomorrow. I have my Board Meeting Tuesday. I am not as ready as I could or should be but I am confident the meeting will pass without too much issue. The back to the planning of the Road to Freedom and the visit from the Russians after that. I realized speaking with Bridget that after I get finished with the Russians it will be the first week of August this Summer which has not even started well essentially be over. I had better start living living in the present.

A New Printer Kinda

Its way hot for this time of the year—probably just a little global warming. The snow is just about gone from the local mountains and the weather guys are ringing their hand casting dispersions on next years water supply. Our grass is dying or frying but not because we are deco concerned just too lazy or disabled to water. But this morning my neighbor had paid his kids to wash his SUV and pick up, my neighbors grass looks wonderful ad as I rolled round the neighborhood sprinks were churning away like 1958 when water and American autos were still abundant. No one cares. Actually I have been doing the war shower thing again: turn on a slow flow of water, lather and rinse all playing this game as if there were really water restriction in place. I heard somewhere this last week that people run twenty or more gallons of water just shaving or showering. Figure I could do both with five gallons of water or less. I would probably use more water if I did not have to hold the shower with my hand. I lay the shower down to soap or lather then the shower shoots all over the place, so I have to crank the volume way down and I guess this action conserves a little. But I don't do it because I am a nice guy.

This morning before the clouds moved in I ventured out to compUSA. I have been threatening to get printee to replace the one in the “big” computer room. Dianne does a lot of printing and has not been able to the past couple. I use a HP 5610, three in one, at the office. The machine been great copping, scanning and printing like a champ. I would like the same kind of capability at home

I really meant to get in and get out but before I knew it I was lost in isle of big screens watching three movies at one time:something with Nick Cage, Night at the Museum and Star Wars IV or something. I think I sat there for over a half an our staring at the screens like Central Utah hick in the big city. I finally tore myself away from the wide screens only to become trapped in the camera section wondering what it would be like ro have a real adult digital camera which cost more then 150.00. I soon realized I had been in this section for more then a half an hour when the third set of pimples stopped and asked if they could help me. I moved on and found the printer I wanted and rolled up to the check out and asked that someone get the printer for me. The pimple looked at me like I was speaking was speaking English and looked at his computer screen and said they were out of the 5610. I tried to be polite and assured him I had just come from the printer section and I had seen one on display. Of course the Jr. pimple got the senior pimple and all of us trooped back to the printer section. It took a while but I found the printer, it was the display printer and that was the reason the 5610 did not show up on their screen because this 5610 was their last 5610 and this 5610 was their floor, display model.

Brought the 5610 with a two year warranty ($29.00) and two ink cartridges. No box, no plastic wrap, just a dusty 5610, an envelope(sealed) full of documentation and a two year warranty. I just buying things.

Busy

I am slammed and I feel I am going to be slammed all summer long. I don’t know how I am going to manage all I need to do and do tasks acceptable. But I am going to try. The past two days I have been prepping for my quarterly board meeting and the Freedom Tour and trying to finish up the last of my grants for the meeting on Tuesday. Actually I really need to have al the grants read by Monday so I ca mail the results over to the staff support so she well have all the stats in line for the Tuesday meeting.

I took Vacation yesterday 8 hours to stay at home and help with cleaning the garage, or start the project. I took this time because I had asked Mark a to come over an assist. I advised him I would watch Jasmine if he needed me to. Mark and Jasmine came over at 1:00 and we started. I took one look at the garage and I was overwhelmed. Dianne and Mark pushed forward though and even though the outside temperatures are unseasonably hot they kept the task until 4:00 when Mar had other commitments. I spent the time playing with Jasmine and keeping her entertained. She was a doll and very little problem. I was exhausted by the end of the day though—too much heat. But I did get a lot of sun bringing my color up and getting me conditioned for the summer.

Wednesday evening I was able to pick up my power chair. The chair was fixed and I was dying in the manual. I planed electronic tag all day with my MD an the shop making sure I got the appropriate signatures for the job to be covered by insurance. I finally got them done and I am going again. Now I think I need to get another cushion soon to keep my butt going strong. Sorry, I am sure no one wants to know about my butt.

Today was my DDS(Disability Determination Service)meeting. This is a lunch meeting , so it is a meeting I take more serious then the rest. I am also the Chair ( chairperson of this meeting) no pun intended. I was talking with one of my chronics this morning and realized I had only twenty five minutes to grab my things roll up to the train and get the train I need to cross downtown and get over to 600 east area of town. I actually made the trip and getting to my meeting just five minutes late—they were still working on introductions when I rolled in. I was a little harried but not too bad for a zoom trip. The lunch was Hispanic and the subject matter was fairly interesting, and I was able to keep awake through the remainder of the meeting. I took the long way back to the office enjoying the afternoon’s heat and my functioning power chair. I stopped in at a couple of sites for the Road to freedom tour exhibit. I just wondered through the city coming back to the office.

Day 2

Day two in the manual chair; This is going to be a long time with out the power hair. I can tell this already. I had to go to a deeper cushion because the low-profile I have been using in this Quickie just is not offering me the protection I need on my but. I have a wound on the but and I need all the protection I can get. I have to minimize pressure wounds because if the pressure sore goes attended the wound can degrade into actual life threatening issues.

Day two my hands are beginning to feel the stress of pushing off the tires of the chair and these tires are brand new too the tread I pristine biting into my hands each time I push off the tire. If I had a functional grip in my hands I imagine this hand destruction would be different. If I am going to have to push this or my other chair for any extended period of time I am going to have to invest into some good old pushing gloves. I figure I can go a couple of months of regular pushing before I need to worry about issues with my rotor cuffs. I am already having difficulty in transferring. I was with the ‘low profile’ cushion. And just the inch or so with these larger cushions is making transferring almost impossible. I really do not wish to fall out of my chair. I have not fallen since Dianne’s back got so bad and I doubt she would be able to assist me much if and when I next fall—but I don’t want to rush the issue either. The cushion I used yesterday was a gel cushion, which is heavy but offers a lot of protection. The cushion I am using today is an air cushion with a valve to regulate the amount of air in the cushion at any given time. The nice feature to this cushion is that you can regulate how tall the cushion is but offers less butt protection. As I near the end of the working day of Day two I find my self tired I can tell my butt is fatigued but not necessarily more sore then my butt was yesterday at this same time.

I think if I really grumped and begged and moaned I could get my hands on a loaner power chair somewhere. I could have rented a chair from the shop where my chair is being repaired but I could not justify $165.00 a week I mean I could actually afford the cost I just could not justifying paying the “fat man” that much money for a chair which is just going to sit there. I don’t know even if I were to get a power wheel chair rented through my insurance if I would do it since the system is so corrupt. It would just not be right.

So, this is really a glimpse of what life will be like in my not too distant future. I can see I need to acquire some sort of lift which will assist me in these lifts I am having difficulty making. I need a couple more sliding boards and I should consider using some of medical leave to rest my butt and assist it heal.

The Usual

With no other alternative I brought my manual chair into work. I am thankful for this wheelchair and it works just fine when I am not using my power wheelchair at the house but really this chair is a real dog. The cushion I was using in the chair has been leaking for some days and the cushions usability as far as comfort and protection from pressure sores has become questionable at best. This morning I dug through my junk closet as I got ready for work and found an old air cushion which might work for a while if I have to use this chair for very long. There is always the option of contacting the folks at the Independent Living Center to see if they have any spare power chairs to use. However I am not to that point as yet.

So if the proceeding was not bad enough I get in the manual chair I am pushing today and realize I have bulges in both tires, one bulge is ready to burst any second meaning I am going to have to get out and get some new rubber on this baby ASAP. Hopefully Magic Rest will have found a simple solution to the broken chair. I finally got hold f Magic Rest and true to form nothing has been done on my power chair. I asked regarding the tires for my manual wheelchair an I was told the tires would be $16.00 a piece!! This is grand theft as well as extortion!! So I am having the Administrative Assistant pick me up a set of tires from the Independent Living Center who sells the same tires for $6.00 a piece and a meatball sub.

Gone Gone the Ginger is Gone

Ginger is gone left yesterday shortly before noon. Dianne did a good job and thing letting the beast go. The poor little dog was just out of control and we were beginning to be mean to her because we could not keep up with Ginger. Ginger just needed so much more then we could give. Dianne is spending the weekend with the kids, BGA, at their cabin. If act Dianne was going to 'kennel' the pooch over the two nights at a cost of $60.00 so I would not have to deal with the dog driving me crazy. The extra cost was enough to drive Dianne to making contact with the local Vizsla Rescue folks and the actually came out immediately and whisked Ginger and her toys away. Dianne called me at work shed a few tears but got on with clearing away the messy evidence Ginger and cleaning the house. I think we will be able to get back to life now.

I took my two hours I earned last Saturday and got out of the office at 3:00 pm. When I got home I was in my power chair getting ready to exit the van when I accidentally backed into the back wall of the van I heard something 'crunch' I did not pay the noise much attention until I move my chair forward and the chair was dead. I reached behind and sensed key wire had come undone. I was actually parked in front of the house and called Dianne on my cell who came out and pushed me to the drivers seat after disengaging the clutches on the chair. I was tired and wanted to get in the house and spend sometime time with Dianne before she left but knew the Magic Rest, the place where I bought the chair and who take care of the power when things go wrong. Magic Rest is open till 5:30 om weeknights so I figured it was best to get the chair repair under way. I got to the shop about 4:15 pm . My main tech Josh, came out and, and quickly informed me that the harness had been damaged somehow but when Josh got another inserted and hooked up there was no sign of life. Josh blanched and indicated he would need to take the chair into the shop saying what ever was wrong with the device was going to take some real searching to repair and that I needed to contact my physician to get a script for the repair in hopes the my insurance would cover , what I am afraid may be an exorbitant repair.

So I got home and luckily Dianne and the kids had not left and Dianne brought me out my trusty manual wheelchair. I got in the house no longer then half an hour and my left tire literally exploded. A blow out! I have two manual wheelchairs and we were able to pull together two use able inner tubes. I should have gone out today and purchased two tires but did not get out due the rain and a long night of little sleep. Hopefully I'll last out the weekend. I have been listening to NPR all day, the rain and cloud cover have kept the temperatures and washing some dishes. It's been kind a nice.

Road to Freedom

The ADA Freedom Bus is coming to Utah and more specifically Salt Lake City. We got word the Freedom Tour was going to happen a couple of months ago. My boss , of course, got an email on the event an asked that I facilitate the Salt Lake leg of the tour. Hosting this event would be a good way to bring focus on my operation a little. This project seemed like a fairly simple task: make a couple of calls, find a place to park the bus, get some media lined up and have an event; Simple as that.The Freedom Tour is a federally funded project. The tour has a 35 foot shrink rapped, wheelchair accessible bus and nine seven foot tall two foot wide panel image exhibit, traveling state to state exhibiting the best face of the Americans with disabilities Act. I have only talked to two people the driver of the bus and the coordinator who running the project and the coordinator over the project now is not the same coordinator when I first got involved. The now coordinator, I found yesterday, is very pregnant. Who in fact is set to deliver in the first of June. I thought the coordinator was in Washington DC but no, she is in Colorado running the operation from her home. Then there is the diver who is driving this huge vehicle all round the country. I think the driver and the coordinator rely heavily on the locals for support, set up and what have you.

When I called the Freedom Tour office to find out about the project and how my office might be part of the event I found out that a local state person, highly visible in the independent living movement was already listed as the state contact. I was happy with this news. I am fond of his person and have great faith in her abilities. It took a while but I finally got hold of my counter part to offer my services and she eas glad to get them. Then I got an email from her indicating that I needed to make a budget, work on getting $5000.00, consider refreshments and a host of other items which greatly raised my “defense shields” and wonder how this event could have gotten so far out of control so quickly. I printed out the emails I had received so far and rolled in and had a meeting with my boss. She freaked as I had when she saw the 5 000.00.

I have not had them opportunity to visit with my “partner” to the North t see what she has in mind. There are a number of other organizations in the area who might wish to partner with us to bring this operation off. I just might be pleasantly surprised. There might be a coming together of all the community operations which serve folks with disabilities and we might have a great stress free opportunity to educate the community on this important piece of legislation. I don’t think this is going to happen though. I foresee stress and a lot of work which will wind up in a lot of frustration for the month of May.

Turtle Time

Turtle time—that is what I call the period of time at my office when the tension becomes so over bearing that I just want to hunker down in my office and let the verbal bullets fly, hopefully over my head. Tension has been building in the office all week and seemed to explode this morning. My office is one door down from the bosses and even though the doors to the boss’s office I can still pretty much hear everything that is said if one or more or of the discussion participants are yelling. The fighting has gotten so bad that I m having to spend couple hours a day just settling my weepy par-time partner down.

Then the doors open and the staff come out and everyone acts like nothing has happened. The whole elephant in the living room trick, if no one talks about the issue the issue does not exit. The trouble is I LIKE both combatants; both or good competent people and I literally, quite often, get caught in the middle.

Its turtle time.

Program Evaluation

Talk about artificial stress. My partner here at the office has been weeping all day long because she cannot figure out what to write for her Performance Evaluation.

The boss this years is trying something new( I talked a little about this last week) she has emailed the staff their Performance evaluations from last year and has asked that we tale take the evaluation supply our comments as to how we feel we have met these challenges i.e. measured up. The staff are freaking out. I have not totally ‘freaked’ but I have to be honest and I had to look at the email long ad hard before I began to feel comfortable with the task. Fortunately the boss, who had just under gone her own performance evaluation and included this document with our own performance evaluation. Three staff have cornered me and asked if I understood what the boss wanted. This “second guessing the proff” was a throw back to school days when you got the term paper assignment and then to tried to figure out how to write it so the teacher would be pleased. I never just went crazy and wrote for as long and wild as I wanted—I was too frightened of being punished. I really feel this is perceived punishment for failure to produce deeply ingrained in any employee who survived the American public and parochial education systems; I think the rest of the staff was schooled in the same way because we all seem to be reacting in the same way now.

So, I am engaging this performance evaluation assignment in a new light. I am going to fill out the document as if I really want to. In fact when I worked for the independent Living Center we used to have to present to the board of directors, one a year. We were to enlighten the board of what our efforts had been the preceding year. Staff hated this assignment. We were give a window of between five and ten minutes and the staff would “die” trying to fill up the space of five minutes of their years activities. Not me. I saw this as my chance to show and glow. I saw a PBS special other night; something about how the present education system is still formulated on an older system designed to unconsciously prepare the student to work in an industrial setting, love and support the authority of management and not buck the system.

Man! Once I started in talking about my self I could have most likely filled in an hours time if I had it. Now I just have to channel this energy over to my performance evaluation. I have even used a ☺(smiley face) to set off each comment I have to make. I actually spent an hour searching the “symbols” section trying to find just the right symbol to insert. I wanted to find a skull and cross bones. I think I would have to create such a symbol and I am planning on doing just that for next year’s inquisition. Happy May Day!!