I Am So Defeated

I have been trying to post the new newsletter all nigt and none of my equipment is working. My zip drives arenot reading, my new computer doesnot have the correct software and I am exhausted! The newletter should be posted on the first and it is already the first on the East Coast I am going to crash and hope for better things tomorrow. BTW thanks for the email Shell I love you.

Wheelchair Bumping

More and more people with disabilities, who use wheelchairs for mobility, in this area are beginning to use the light rail system for a transportation in this area. This is good and bad. Good in the sense that everyone should use public transportation. Public transportation works or many people in the Salt Lake area, it’s inexpensive, dependable and many times convenient and best of all public transportation in this area Utah Transit Authority(UTA) is accessible to people with disabilities. Now the big drawback to all this wonderful transportation is that more and more people in wheelchairs are finding their ways to a Trax station. People who have been so mistreated by UTA’s Para Transit system they are willing to risk everything and try the regular transit system. This is very good! I won’t go into why this is good because I never know who reads this blog, and I could say something which might get me in to big trouble. So suffice it to say that it’s great when someone finally takes the push and gets out of para-transit hell and decides to Ride the real system The problem is the main line system, in my estimation and Trax in particular is seriously under build to serve the number of folks who whish to ride the system. I have touched on this issue in other blog entries. Anyway, yesterday was a typical day on Trax. I get on and there are three other power chairs on the train. We dance our ways into a seating arrangement that allows all of us to ride. The next stop the “dragon lady” boards. Dragon Lady is a women who has some sort of hidden disability and has managed to get her “disability pass” she walks dragging (dragon) a wheeled basket. She is kind of spooky and she is very demanding(until you get to know her), assertive (Dragon) in asking for a forwarding facing seat. There are actually a number of the able bodied riders who are quite frightened of her. There are all blog entries for another time. So Dragon Lady comes on board and then at the next stop another power chair squeezes on. The next stop ANOTHER chairs its. The driver opens the door and lowers the bridge-plate but there is no way this guy is riding this train. The guy finally backs back on to the platform and waves the train forward indicating he will wait for the next train twenty minutes later. The driver “buttons” the train up and zips away. I cannot believe the crip let that happen! I wouldn’t, I would have turned my chair on high and plowed in. UTA should not be able to get away with this—they should have to be responsible to people they “bump” just like the airlines. I was thinking UTA should provide at least month pass to someone they “bump”. Providing some sort of compensation would kill the Authority and perhaps urge the Authority forward to remedy this unfair system. Three bumps in a month and the poor consumer should get free transit for a year.

Scenes from the Fam Reunion

wind

unk

fam2


bro

There and Back Again

The day began, as a beautiful family reunion day should warm, and blue skies and general chaos. We slept in and were running late but we swung and picked up Ani and were South Bound There was a little bit of drama with the wheelchair lift but we got loaded and were south bound. Most everyone was there except Linda who had a cruised or something. Chaos was at a minimum and visiting was going well. We down loaded and the fam seemed pleased to see us. There were two cousins who made it from then Seattle area. Bruce and Raymond. They are both older then me but I was quite taken with them the first I had ever met them back in the sixties. They were too cool—skateboard riding beach boy clones. The years had been cruel to them as I but were good to see them. Aunts, uncles, brothers and sisters were all there. Hot dogs, corn dog’s potato salad and pop. I have images to hare but I cannot locate the camera, which worries me a bit, but I am sure the camera is here somewhere. Mom tried to gain control of the event but was difficult but he managed to have a kid auction when, surprisingly went over well once the kids understood what they were supposed to do. Mom brought a box full of nick knacks: old yo-yos, assorted toys, hopscotch marker, bag of marbles; things, which collect in drawer over a lifetime. The kids bid with change collected from the grown up before the event started, 25 cents was the high limit. The little guys really thought it was cool. I was genuinely surprised. Everyone was impressed with my new power chair. I did my best not to go into my diatribe about how much the chair failed me in the speed department. They would not understand. They never have I doubt they would now.

Storms blue in like clockwork. Three hammered the event while we were there. Black menacing clouds fire microburst after microburst accompanied with rain driven my winds coming in under the pavilion SIDEWAYS at times. Tables were swept clean by the wind gusts, plastic containers were whirled away. This was following by clearing and heating only to be brushed away again two more times. After the last rainstorm, the fam decided to regroup at my mother home. Dianne’s back was killing her and we needed to get going. We made our goodbyes and finally took off about 3:30 ALMOST GETTING KILLED JUST ONCE! The semi I was following started to brake suddenly. Luckily, I still had my wits about me and I decelerated immediately when I saw the smoke billowing from his wheels. I remained alert for the rest of the journey home pondering the effect of what could have happened. We would have been fodder for the Fox News at nine and later at 10:00 for the other networks. We would also be a dark spot for all the rest of the reunions, which would follow. Well, Shelly just rang I better go. Check back tomorrow. I will try to get some images loaded.

The Perfect Storm

Remember way back when I got the word that there would be a family reunion this year? It’s tomorrow not in Boise, as feared, but in Santaquin which is great for us and many of the others who have traveled far for this experience. I have not heard anything more about the time of the events, nor has my brother who usually hears everything cause he is one of the Favs. This is weird—all things considered—the older bro called my mom last night but got quite a disjointed conversation. Realize this lady is 93 years old, she does have moments of confusion but is usually right on, especially for events like this she controls very well. The older girls, my sisters, Faye and Irene are already in town and have been for a couple of days now. No one has herd from them, this I think is very weird. I just called Mom and there was no response from her phone. I am hoping everything is all right but I am beginning to sense dark clouds of an emotional storm front moving in. I can understand not being able to contact Mom but having the older sisters not make contact seems fishy. I shall be keeping you all updated as to this emotional pressure system and of any stray lightening strikes.

It’s almost five, I am the only one in the office, again, this Friday night. My partner spooked out about 1:30m, then the reception split at 2:30. One of the part timers wondered in for an hour or so but has since vanished leaving me and my chair. I called the chair folks and the assured me I cannot get any further speed from the new chair but seemed interested that I am getting such poor mileage from the batteries. They are going to send someone out to check on the chair either tomorrow (which I doubt will happen due to the Fam reunion) or have someone come-out to the office sometime next week nd do the once over on the chair to see if indeed there is an electrical issue. I still may press to have a charge installed or find a small charger which I can carry on board. The techs are also going to check some of the other settings of the onboard computer to see what else might be done with the vehicle. I am not holding my breath. I am just going to have to live with what I have got, lots of torque and lower speed…life is a trade off.

I am really going to try to like this weekend even if the matriarch has decreed no grilling. There is talk of nothing but prepared food i.e. KFC, Pizza Hut or worse micro-waved hot dogs!! I would even put up with boiled dogs verses micro-waved dogs. Mom does not want- whoever gets saddled with cooking hotdogs and hamburgers- to be able to escape the close fami moments which might arise at this fam-fest. Tell you what, I would rather have food over talk anyday.

Welcome to light speed
The image above is a failed attempt to take a covert picture on the train into work. I was going to delete the image from the camera but the more I looked at the image the more the image grew on me. I could not delete it. In fact I have been thinking about the image all week and wanted a way or excuse to incorporate the image into my blog.

The first cinematic depiction of launching to light speed I can remember was in one of the Star Trek movies. The captain says “engage” and then you got the blurred effect of light and image being left behind this was so cool to me. Now, every science fiction TV and movie director uses the same effect—somewhat mundane but I always like the effect. So, I image now, I travel on this train which can travel at light speed. I board the train the doors shut and “whoosh” we engage and leave the light behind. Everyone of us on the train is hurtling along at light speed and I take the picture and get these effects…Its all good.

ONE THOUSAND WORDS

WJ+Caddy

I was fortunate to be able to spend sometime with one of my kids last night instant messaging (Iming). Walter James (WJ) is my writer as well as musician. He lives in Oregon with one of my other kids—Shelly and her husband. WJ IS 21 years old and is struggling with the world to carve his niche there in. Like any good, responsible writer—WJ has a day job making the payments of life as he can. He works at a Coffee Shop and does OK. He has a roof over his head, food in the fridge and a ride…a nice Caddy. One of the recurring discussions we have is how to keep focused writing. This can be a major challenge to anyone who is trying to establish himself or herself as any kind of a word smith: getting beyond the block. WJ shared with me that he has recently committed to writing 1000 words a day. He writes fiction and that’s cool and I’m impressed at his current output of content. He says he has been writing this volume for about two week. Wow! 14 thousand works. He is planning to have his novel hashed out in about three months if he can keep this schedule up. WJ writes in a two-hour block each day to produce his 1000 words. This is great. I wish I could do this. I may think about trying later on in the summer. I can make excuses of why I cannot not, the most obvious is time. I agree with WJ, let the words just flow get the 1000 words out and worry about editing at a later point in time i.e. rewrite. In this case quality will come after quantity. Still, the only time I do have to do such a project would be after the workday, when I am spent and burnt. There was talk at one time of coming in to work early and writing then—this was a major project that I was tying to get going with a writing guild I associate with. This has yet to materialize. Many days I am so exhausted following work that I just have to rest till bedtime. Weekends are taken up with home and fam responsibilities=excuses, EXCUSES, EXCUSES! This is what really scares me that I make all these stupid excuses…A WRTER WRITES, he does not make up uses. WJ does not and this really impressed me. Write On!

Change Is So Hard

OK, I have had the new Jazzy/Quantum 1121 almost five days now. I have forced myself to sit in the new chair, all day for three of those days. Imagine, if you well, a new pair of shoes or starting new physical regimen of one sort or another. Your body reacts: muscles are stretched and challenged and soreness results. This is true with a new wheelchair especially this chair. I have to relearn transfer techniques at the office as well as home. The ride in the Quantum compared to the 1120 is day and night. I see the analogy as riding a Caddy to an MGB—the Caddy will render comfort and ease where as the Quantum renders performance at the cost of physical comfort and convenience. The seat in the 1120 was huge and afforded me lots of storage space for books, back packs sweat shirts bottles etc. There is none of that ,naturally occurring on the Quantum—there are some options to consider but I have not really considered their exploitation as yet. I used to glide over cracks in the side walks, railroad tracks and the new chair jars my teeth out of my head doing the same and just keeping put in my Quantum is a challenge riding in the van, train and bus. The Quantum is much lighter. I used to be able to use the weight of the 1120 to safely brace against for transfers and cruising stability but not any more. I have to pay attention to everything from curbs to corners. This is OK though, just part of change. I have accepted the speed differential of the two chairs and can live with slower speed. I still get to where I am going. I’ll just have to get used to the lack of comfort this is life, a “free” chair, brand new, under warrenty I CAN CHANGE!!

Breaking up's Hard to Do

New

Buyers Remorse…Just a Little

Friday—the new Jazzy =Quantum 1121 arrived. This is the first brand-new power chair I have ever purchased. I hate buying stuff because I always have buyer’s remorse. You know the feeling you have knowing that you could have done better then finding out that there was something better just waiting round the corner. My decision and my insurance plopped down nearly $8,000.00 for this winner. It is sturdy and should hold up under the abuse I can reign down on the poor device. The appearance is OK a little more “institutional” looking then I would have liked but still looks “rugged”—lot of steel and rings at appropriate spots to use as tie-down and mounts for all kind of things. The real only real issue I have is the speed of the chair. Quantum is not nearly as swift as the old Jazzy. Mark and I raced them last night. The old Jazzy is definitely swifter. I may try to figure out a way to squeeze more speed from the little guy but I am OK with the speed Quantum will render. I can live with it for now. This speed will get me round to the Trax stop and round downtown any faster and I may hurt my self. I am going to see what is on the net. Wheelchair Junkie always has some radical ideas

Old Jazz

Old JazzThere is the old jazzy sitting right next to the garbage . I wish I could justify keeping the old horse but the chair is so old I cannot even get electrical parts for it any longer.. The chair still runs though, in fact it runs faster then my new chair; bums me out sort of. Mark A was here last night and we ran them against each other “I wish I had run the video on that”. The old jazzy performed with wonder. Alas, it just a toy, now at best. I just wish I had the old jazzy’s speed.

Shoes You Loose

Whose Shoes

Another mystery. These shoes were sitting at my train station yesterday morning. No one paid them much attention until I started snapping images. These shoes are a little trashed but truly some good miles left. Unlike images, I have of single shoes along the side of the road and the occasional pair tossed over a phone wire. These are shoes left in a highly visible place…and yet, I could get no one to take responsibility or owner ship for the lonely discarded footwear. These train stops are kept very clean; they have folks who come n and clean up a couple of times a day, so the shoes had to have been left relatively close to the taking of this image. These train stations may also be a time station portal or multi-dimensional rift.

Giant Alien Clouds

Today, I had a meeting with the local Assistive Technology Foundation. The meeting is in Layton a community about 30 miles from my office. I drove my van today so I would have the transportation I would need. The meeting was OK, the meal hot and tasty. The meeting content was interesting and some comments of contention made or near contention which promises an interesting Fall, the time for the next meeting of this group.

The heat has finally found it’s way to the State. Huge bi-cumulus clouds have boiled up and hung low over the interstate as I sped back to my office about 2:00 this afternoon. The wind is blowing from the South—but I do not know what that means but it is a hot dry wind. I heard thunder rolls but did not see any lightening. I am sure I’ll see some on my drive home. The cloulds are huge, black blue and threatening. Some bits of rain have spilled from the clouds but dried quickly—rain on hot days like today produce a warm rain, a welcome rain which cools and refreshes. If I am lucky I will also see lightning—quick white jags scaring and splitting the sky. The clouds today are huge and dense, big enough to hide immense alien

Juggernauts just waiting to take over the State .

Lunch with Carol

I had lunch today with Carole Mikita She is a local TV personality, anchors 6:30 news. I got stuck with giving Carole an award for Media Representative of the Year. Very interesting. I have always been somewhat indifferent to her. Since she is the Cultural/Religion Editor for the Station little she ever reported on affected me. The network she reports for is also the major network in this market since the station is essential supported by the regions dominant religion. Now, I do know her brother an assistant Attorney General for this state. He also has a major disability – and for this I have been mildly impressed with his highly visible position in this states government. This guy has Muscular Dystrophy, uses a power wheelchair, has major bucks and gets round very well. In my opinion he is a major role model (excuse the pun) for people with disabilities in this area.

I was forced to do some research on Ms Mikita. I found out the Carole is the same age as me, we actually have a lot of the same thoughts. She is committed to her brother, family, religion and art. Her parents ingrained this in her and she has stuck to her commitment. I used to think Carole was a lot of fluff but upon reading her work and some of her essays I see she thinks more then I had given her credit for. We had a good lunch .

Hey I Placed!

place
I was in the back of the office this morning making coffee when the boss came in and announced and congratulated me for winning the division I competed in Saturday at the 5K! Needless to say, I was amazed by this announcement. I finished the race and hung round but did not hear anything about me winning anything. I placed a call to my buddy Kim, who informed me that I had actually placed third in the “assisted” i.e. power wheelchair division. I was still pretty shocked. So I have a ribbon coming cool. I get a image of this as soon as I can. My time was 33 minutes and some seconds. Still, this was with a power wheelchair—I felt guilty eating one of the oranges after the race. I felt these oranges were for the REAL racers, those who had provided actual human power for the race, whether pushing a chair, hand bike or walking or running. I just pushed a joystick in t

Waiting for the Rain to Stop

Sunday afternoon on a perfectly wet weekend, the weather was not bad yesterday morning for the UILC 5K. I did the race in my power chair; the weather held for that thank god. The winds kicked up, the clouds closed up, and the rain began, Major rain for us in June. D and I went shopping following the race and ate at the Shang Hi one of our favorite places. Time with D was wonderful. We next did the week’s shopping and I came home. I got a couple of steaks at the “throw a way” section of the meat counter in hopes of finding enough dry and warm weather to “burn” out on the deck but nothing as yet. Today I reinstalled the printer. We have not used the printer since we got the new system, last week, and of course, when we needed the printer last night the computer could not computer could not find the computer. I was too tired last night to do the fix right and this morning I downloaded the drivers I needed and the thing worked. I was quite pleased with myself only to find the printer is out of black ink so the documents we needed printed could not be. Now, I have to venture out in the cold rain. However, D has suggested that she could try to fill up the cartridge with ink. She has the equipment but I think I need to get a couple of cartridges just the same. I want to get a different keyboard too. Mark A indicated he may get by today. I wanted top work on cleaning the garage but it maybe too cold to be out there for any real quality cleaning. I am feeling a real hankering to get on my hand-bike and ride a little. I know I can never ride like the paras but just the same, it would be fun to pump for a while.

I still have to go to the market, Office Max and such and get something productive done with this wet, drizzly day.

I'm back!!

Way back on Tuesday I realized I had conference the end of this week. I had completely spaced them. So, I jumped back in my power wheelchair and off to the Hilton. Luckily this was just round th corner from my office but still took me away from my computer for the rest of the week. I feeling sickly too the past couple of days so I did not even enjoy the conference anyway. Not that I ever do. I have always felt conference are a monumental waste of time unless the conference is in Washington DC, San Fransisco or even Seattle but that is a long shot. Oh, i like Portland enough to suffer to go there...anywhere else count me out. This conference was being held in my own city so I did not have to stay away from my bed. The conference was put on my Easter Seals Project Action ESPA. A conference to train lock transit systems to work with gimps and old guys. Usual stuff but the food was pretty good and th hand out useful. I met some interesting folk one or two I would be interested in corresponding with. This one guy was from Berkeley CIL. Christopher. He may be an interesting contact. The rest were pretty pedestrian. Conference salmon swimming up stream to spawn then die in last comments of the last breakout after the mandatory conference evaluation had been filled out. Waiting for cabs to take then out to the airport and their tired lives.

So, I have lost two days but tomorrow is Friday. I have some critical function I must do for next Tuesday—return some calls , check on th new power wheelchair and see about getting the van looked at. It'll be good to be back in the office.

Why do I Even Try

Today is the annual “Tissues” conference. Tissues is the state wide organization quasi think tank which develops policy and legislation for the low-income of our fair state. I am there passing out information doing Outreach. It is the first dress up event I have been to since I invested in a couple of new sport jackets. I have had then for nearly a year now but have never worn them. So today is the day I can and I did. I chose a white turtle or mock turtleneck. I should have known better but I could not help it. There I was white under black with full frontal exposure to the public. I tried everything from the moment I put on the shirt till I got to the conference. I just sipped my coffee. I had two cups at the office before I went to the conference with no problem. I became confident, I became over confident and tried the same thing with a Styrofoam cup; that was my mistake. In just once second, not thinking, I goosed my power chair and the coffee sloshed from my cup I was holding in my mouth to my white mock turtleneck shirt. Now, I look totally stupid with nothing to cover with. The coffee stain is too huge to be covered by my nametag. Angela at the office said not to sweat it, just pull the jacket over and this will cover the spot. She maybe right…it’s the only alternative I have. I must accept the fact that I can only wear darks, preferably black…what the hell was I thinking? What or who do I think I am?

Working Till I Drop

I just got off the phone with my buddy Mack, from the (State) Mental Health Association—what a fun and crazy guy. We used to work in fairly close proximity to each other and later closer when he became Ex. Dir of his own operation. He has a small operation and works low under the radar to bring about good changes for his constituency very similar to my agenda. Both of our spouses are very ill to the point of having to require almost full time Rehab intervention. My D- is going to have to resign her position which has resulted in great stress. We are State employee which means we have state retirement plans. D- and I figure if we cannibalize our retirement accounts we should be able to survive for at least a year…if we are careful. I have not really built up a lot of retirement, not like what I have acquired is not enough to really provide any type of “real” retirement. So, I have always figured I will have to work till I drop dead probably right at my desk. Mack said essentially the same thing, he will work till he drops dead too. Perhaps this is best the alternative of waking up each day with nothing to do and suffering through till sleep takes me at the end of the day and to go through that each day till the Reaper shows up at my door. And perhaps this is the best way to live a life, to make it full with every minute counting.

The rain came back today with a vengeance. I had to fill up with gasoline this morning and decided to drive in today. The rain seemed torrential this morning and I appreciate having the vehicle. Summer seems to be having a difficult time finding it’s way to this town.

Happy Birthday Mark

bday

Finally! I called the bank and finally the BOA folks\’s fax came through and I was ready to go. (Please bear in mind this event happened yesterday, Friday. Yesterday was also Mark A’s birthday and he wanted to come with me to pick up the new computer. he was working but would be off my 4:00) Luckily I had my monthly meeting with the Russians Thursday so I had a couple of hours to blow…I worked through lunch so I was off by two o clock! I should have brought the van in today but I didn’t so I had to Trax home get the van then fly down to the Credit Union. I was doing pretty good time wise when I got to the credit union. But just as I was getting ready to ask for Rachel, the credit union person I was working with on my loan a chick asks for Rachel, MY RACHEL!! And I swear to Moby she started a song and dance which lasted thirty minutes!

I finally got to Rachel and this took another 15 minutes to sign for the loan and get my check. Then I sprinted out to the van and out to the Westside…this took another thirty minutes at least but I was really fortunate Mark A had not even got off work yet. Luckily, again, he called me on his cell and talked me in because I was hopelessly lost. I got him and got some of his domestic business taken care of and we were southbound. Traffic was terse, it was right at 5:00 pm but we slowed to the flow and got by. Long story short be got to the shop. The case I wanted to use, my old computer case, was too small to house all the new equipment Josuah was installing and he decided to put everything into a new box. A styling box with great light on the inside. The machine looks like something CloseEncounters of a third Kind. Mark came home with me, passing up an offered birthday dinner, to set up the machine. By now, the time and day was wearing on me. I did not look as exited as I should have, a new system and all—I tend to worry about things too much especially new things. This worry dissipates as I use the new items. So, I got Mark A back into the van and we drove back towards his apartment. I gave him some money and my old computer case which had affair amount of RAM I could not use with my new system, for his birthday gift. We stopped at Albertson’s to break a twenty so I could have a little change if I needed it. I waited in the van and Mark came out a bit later with a birthday cake, he bought his own birthday cake. I could have cried.

Back In The Race!

Race

I used to work at the local Independent Living Center (ILC). I worked there for over ten years. IL is a philosophy, a way of life almost a creed. IL and the ILC is also a place to work, usually a private non profit a a place where people with disabilities can hang, get services and advocacy and re-integrate back the “system”. Anyway, the ILC like private non profits every where they need money to survive and 15 years ago they started the “run and roll” a 5K fund raiser. I have pushed the race a couple of times but not in at least 8 years. Five K is not very fare, just a couple of miles but for me the push really wore me out. I have not pushed the race since I started using my Jazzy. I know, it is sort of a joke to use a power wheelchair to race but why not? I spoke with my buddy Al, who organizes this race, and he indicated that there is now as many power chairs in the race as runners so I will not look too out of place. I usually do not do the race obviously, but when I was visiting with my boss this morning she mentioned that her and her husband were racing so I figured why not? Maybe it will be fun and maybe I can get accrue comp-time and hang with my old buds.

Still waiting for the new power chair and computer.