Oh the Pain , the Pain, the Searing Pain

I might be sensationalizing a bit but the pain is truly there and I have finally gotten to that level of pain that I have been motivated to called the vendor where I purchased the chair. You all have to realize that I have to be hurting pretty bad to do this. Case in point, this morning I actually had tears streaming down my face but I don’t know if the tears were from the pain of just the wind in my eyes. I suspect the wind is doing something to my tear ducts making them tear. I must have looked pathetic.

There is something going on though. The pain is being generated from sitting in my power wheelchair the wrong way. I know this because I get home from work with pain so bad I am afraid I may not be able to transfer out of my chair but as soon as I take the pressure off my back the pain almost immediately subsides and vanishes. Usually after I sleep all night I can stay in my power chair for a good part of the following day or even all day but not lately. This morning I was l almost in puke pain. There for I “jumped” into my manual chair as soon as I got into the office and have felt better all day.

I started using my power all day a couple of weeks ago. I found that staying in the chair was better for running round the office plus I did not have all this transfer drama at lunch when I would go out to lunch or when I go home in the evening. But, I have found out riding in the chair that long is doing a number on my back. I asked the shop guy I had on the phone what could be the issues. He would not say anything over the phone. So I know I am going to have to go ion an be evaluated by one of their “therapists”. He quoted me ½ hour at $100.00/hour like he was doing me a favor. He said it should be easy to tell if the problem was me or my chair. The guy on the phone did indicate that the “body” does change over time and adjustment then must be made and if the equipment has worn out for one reason or another then the insurance could be “activated” and be financially helpful. Say, if this does happen then I will have to once again enter into the medical arena to have my MD write up a script. I think my cushion HAS been letting me down the last couple of months , maybe I DO need a new cushion. This really would not surprise me. Dianne is also talking about perhaps I should consider seeing another Doc, maybe a physiatrist from the University of Utah Medical Center. I have been dreading this but maybe the time is getting closer maybe the time is here.

Now, I have decided to be evaluated I want to have the evaluation done an get this pain behind me. But then I find the therapist I want is on vacation and will not even be back in the office until next Monday. Hey, a therapist is a therapist s why not have one of the other therapists in their stable to the job but “Jerry” is at the hospital all day but will be in tomorrow. So, I left a message on “Jerry’s” machine and hopefully he’ll be calling tomorrow so I can set up an appointment before the weekend. I am sure this is just the beginning of another great adventure.

MLM Monday

I just got back from lunch at Senator Hatch’s Women’s Conference lunch. I could not take it any longer I had to leave. Actually, I should not have gone back after I left this morning after the Keynote Speaker Justice O Connor. The only reason I went in the first place was to here the Justice speak. My boss paid for the event—anyone wanting to here the Justice speak could go. Other staff also went to the breakouts. Not me I came back to the office and returned calls and answered phones. In truth I returned to the event to have lunch. Since the office paid for the event , which included the lunch, I figured I might as well eat the lunch. I was hoping for something hot—I would have even settled for rubber, conference chicken. Boy was I dismayed. When I rolled in I knew something was dreadfully wrong. There were box lunches everywhere!! Thousands of them and the lunches were not even sandwiches they were these weird little roll-ups. Mine was turkey, cold and OK. I was going to say yucky but it really was not yucky just OK, I was expecting so much more from a US Senator—warm and yummy at least.

Even O’Connor’s speech was less the satisfying. I expected more then a historical recounting of her life, though that was entertaining from a historical footnote to the first female Suprerme Court Justice. I suppose she was cutting edge in her day as much as someone who was nominated from the Reagan administration could be. I wondered if she was getting a stipend or a speaker’s fee or doing this as a favor to Senator Hatch or the Republican Party. I wonder if she really like the Senator like she said she did of if this was just GOP blab because how could she be as smart as she said she was and still support the Senator? Maybe she feels sorry for him. That’s got to be it sympathy speeching.

The Women’s Conference seems to be a huge Utah event. Then Women’s Conference is definitely the Senator and his wife’s shindig. Country music(barf) and MLM drinks on the table with plastic shot glasses. I did not try any of the elixcir but others at the table did and they liked it. But multi-level marketing at such an event as this pleeeease! But I did notice other MLM s were sponsors to the conference and that says it all. I also wondered if she and he got the same lunch that we got. Just wondering.

PS—thank god all this baseball stuff is over and Fox can get back to it’s regular programming, Standoff, Prison Break, Bones and House should start their “second season” tonight. I don’t like these split season things Fox seems to be pioneering. I cannot believe the viewing public puts up with it. I still cannot believe Fox caved in and nstarted doing the whole sports thing just like the other nets. I lost a lot of faith in Fox this season.

Sunday Morning

Dianne is back safe and sound from her trip to the cabin. Anakah, Gabe and Dianne seemed to have a great time. They took pictures a few I m adding to this post. I sensing this post is going to be a short “weekend” post. Not a lot happened between the pain and cold I elected to stay in and compute and red. I finshed my Stephen King, checked my email and drank coffee. I did run to Sam’s to fill-up with gas and stopped at Lowes and picked up a hand held shower to replace the “hand held” in our show now which has sprung a leak: a sharp jet of water which stings and confuses me in the shower.

I spent time with my mom yesterday at her care facility. Mom is doing much better it seems. Her spirits were up and she seemed happy to see me.. We visited for a couple of hours. She shared with me that she had wanted to go to breakfast with her companions at the care center but she had been informed the staff had already put her breakfast together. Mom said that it was OK but I could tell she had actually wanted to breakfast with her peers. I think her going to breakfast was an admission or perhaps an acceptance that she was “here to stay” this care facility was her new and last home. Mom shrugged her shoulders as if to say that this is the way that it is. I almost sensed she wanted say “Why bother, you live through three four wars a couple of marriages, bury your husband, live with your sister and brother-in-law and get cancer and wind up in a long term care facility. Mom informed me that her sister and brother-in-law are cleaning up the house making the house ready for sale. They are moving to an assisted living complex in Provo. Sounds like an upscale place mom says the management of the Provo facility charges you for everything nothing seems to be included like at Mom’s facility. I suppose this is one way to accept the way life ends.

Mom grew tired, she says she is always tired now. Mom would close her eyes and try to listen but I could tell would soon loose herself behind her eyelids slipping into a light sleep. My mother has bone cancer my grandfather Harker, her father had bone cancer, and incredible pain filled Grandfather’s last days. Mom indicated, some what nonchalant, she hope she would not live long enough to have to go through this.

What could I say to this? I assured her that medicine had come along in the forty since his death and took my leave promising I would see her soon and that if she needed anything to please call. My brother is coming down from Boise next week and my sister in the week following that. Mom seems to be getting more and more tired..

SND

Saturday night, I am alone, my back does not hurt, like yesterday, listening to sixties music and writing on my computer. I miss Dianne and I don’t like being home alone…it’s a little scary. I have no motivation to go out so here I sit listening to Beatles and Mommas and Pappas music and thinking about Saturday nights 30 year ago.

8:00 pm I would have been done with the farm chores, had dinner and have taken a shower and would have changed into my slacks, red (collarless) blazer and wingtips and be waiting for someone to pick me up for the Saturday Night Dance( SND). The SND, was the dance hosted by the LDS church for it’s or any youth 14 years and older, who were willing to put up with their standards. But the SND was a place to be, music girls and away from the parents for four hours. A place to pretend you were cool. It could have been Larry Green, Dennis Dahl a couple of guys just a little older then I but they had their licenses and most important a vehicle.

Mom and Dad would be nodding off on the couch just as Gunsmoke started. Would patiently be waiting in the front room where I could see the light of cars coming down the long road which connected our farm with the main high way. Mom would still be there sleeping “watching” TV when I got home from the dance round 1:00 am.

The SND officially started at 9:00 pm with an opening prayer. The dance was held in the Cultural Hall or gym of the ward house or stake center. The dance cost 25 cents or something like that with punch and cookies at half time. Three hours was all the time you had on a Saturday night to meet the guys act tough, build courage enough to talk with a girl and ask them to dance. In truth there were many nights I never danced standing instead with a bunch of punks like myself secretly wishing I had someone to dance with. Actually, there were a couple of girls from my ward or Seminary class who “buddies” and these girls were safe to ask to dance because there was no chance of rejection—they were like guys only soft. The real risk was asking someone to dance you did not know from Jack. I did this a couple of times. I survived. I learned to risk, even if just a little. I even continued going to these dances after my accident. I even asked girls I did not know to dance then too. I cannot believe I did that. Even my “girl buddies” were risky then many could not get past the wheelchair of the paralyzed body. Like the guys girls would clump n groups and some times I could go through an entire clump and no one would dance with me but eventually one would but often the song would end by the time we got out to the dance floor.

It’s Saturday night, 9:30 and here I sit alone blogging wish I could see more clearly memories lost.

No Justice

Dianne just left Aunie and Gabe to drive up to the cabin, a two hour drive to the semi-wilderness of Utah. Gabe’ family owns a cabin there (now accessible) and Gabe tries to go there as much as he possibly can. Dianne never gets to go because she has this weird rule that if I cannot go there then she will not go. But she has also not been able to see Aunie as much lately as she would like and took this trip as an opportunity to spend time with the both of them. I assured Dianne I would be just fine batching it or the weekend and off she went. Actually Dianne got the opportunity this morning so not a whole lot of planning has been made. Dianne called me at work and ever since then have been trying to figure out what to do with almost 48 hours of unsupervised time and most immediate, what to do tonight. Simple head back to the free crip movie house. I was excited.

Thank god it was a fast day for me. I had a “Retreat” for one of the boards I sit on. I spent the last part of the morning I was in my office trying to find the email I had received the announcement on—I could not find it, the email. All that I Had was the notice I had written to my Groupwise(E-calendar). I grabbed a fast lunch at Taco Time then droved to the building I thought the meeting was at—it wasn’t. The ditz behind the desk had not a clue. I figured the meeting would be at the Utah non-profit Corp. building, a older building, cheap in rent but accessible only by assistive technology. Now, keep in mind each one of these places I got out of my van meaning I had first to transfer into the driver’ seat drive to where I thought the meeting might be then transfer back into the chair all of which is major labor intensive .Anyway I got to the building, down loaded used the lift to get to the officer to find out the meeting was just a half a block from where I initially was. Then to top this off the lift door would not open to allow me to go back down to the van. Luckily Joe Maitainence just happened to be in the building but unluckily Joe could not figure out the problem and a call was placed to the elevator guy who was luckily in the neighborhood. Then even more luckily Joe messed with the latch the elevator srprung to life and I was set free to get to my retreat an hour into my meeting.

By the time got home I was exhausted from the multiple transfers—my back was in agogny from something gone wrong with my seating system causing me great pain just to sit in my power. So, I am staying in on my “free” night. I m going to blog, read my SK and watch a little tube. Maybe tomorrow, after a night’s rest and a visit to Mom, maybe I’ll try the movies again…sigh

Sick Sick

I stayed home today. Last night I had a twitch in my throat , actually the throat felt as if was going to be sore. As I was leaving work I visited with the boss and informed her that I was not feeling well she said I had the time if I felt sick maybe I should say home. I did. I got some rest and the scratchy throat has gone away, I got some time off my butt an some rest. So, I guess the time away was worth while. We will see when I return to work tomorrow and see what trauma drama has transpired. Some has I know something has happened something always does when I take time off.

This afternoon I felt good enough to take in a few movies as the free crip movie place—we did three movies, two movies and a cartoon, none of which I really liked Departed, Open Season and the Prestige. I would have rather stayed home and read my Stephen King.

I Know…I know

They are done the last of the focus groups was this afternoon and the focus group I was responsible for: Transportation was this morning was this morning. We had lots of great participation and good information that we can generate a good five year plan from. Because of the day’s meetings I brought my van in again, also due to the fact that rain and maybe even snow is forecast. I am so limp sometimes. Also because of the days meeting I knew there was going to be a lot of cars parked in our parking lot. I have learned that when there is a major event going on I am smart to leave my van open which means I leave the side doors open and the lift deployed. Even though we have designated parking in our lot; many desperate for parking will, park in the cross hatch between the two designated parking spaces. If I leave the lift down people will not so close that I cannot get into my van.

All day long people have stopped me or by my office to tell me that my van is open and exposed to the elements. I assure them I know this and it’s OK, the rain or the snow will not really hurt my vehicle. I would rather risk getting my lift wet then not being able to access my van when I want to. The first couple of times I graciously thank them and make an explanation of why I did what I did, after all these folks mean well and I do have to work with them. It’s the building custodian and people who come in from other offices in the building to let me know. I finally , with exasperation, wave them off exclaiming “ I know I know”

Case Closed

Every once in a while I have a case that drags on and on and takes on a nightmarish quality. The kind of situation when a customer will call in ( in this case, a customer’s son) and I dreaded the call because I have to tell them there has not been any progress on their case.

Over the past couple of years we(our office) has had the opportunity to giveaway wheelchairs to people who need them. No questions asked, nothing to fill out and not strings attached. The wheelchair is brand new, fairly light weight with a small back pack. In fact these chairs tend to fall apart fairly quickly, I believe they are temporary at best but it is amazing how fast these chair go when we have them in stock. It’s a good chair for someone with a broken leg or maybe an older person who will not put too much stress on it, or a chair to use until a more heavy duty chair can be ordered. We them office has had access to a pick-up truck we have been able to pick up a pallet of chair at a time about five chairs come to a pallet. I don’t know how word gets round be we start getting calls for the chairs as soon as they arrive and are gone with in two weeks. Well, we lost the truck and so we have not had any chairs for some time. But people continue to call needing the chairs. These chairs are provided by the Wheelchair Foundation, a national project providing wheelchairs to those who need.

About two months ago I got a call from a women who just would not take the explanation that we did not have any more chairs. This kid was searching for a choir for his mother and he was dedicated to this project. He called every week and sometimes got pretty hot under the collar—I would tell him this is not what our office does. We have been doing this only because these chairs were available. It did not matter. Realizing the kid was not going to give up I figured better see what I could do. I called the foundation I described the problem and the sent me a chair or a pick up notice for where the chair was being sent. I got the email this morning: the wheelchair had been delivered. I got on the phone when I got back to the office from my meetings, and called the consumer’s kid who sounded ecstatic. He was could not wait to get over to Welfare Square to take possession of his mother’s new. Mom was in the background yelling thanks. I apologized for how long this event took to arrange and they both let me off the hook saying it as not a problem. It was a problem they should not have had to wait so long. I was part of that problem—I just did not know how to do it. I do now and if I ever have to do this again I think it will run a lot smoother.

So the consumer seems happy, she has her chair, the kid is happy the mother is off his back and I am pleased to have a warm feeling and a case closed.

Monday Madness

So now there is a stand off here at the office with my work mate. What a strange relationship. It’s almost like fighting with your spouse but the fight is at work so some componets are the same and some completely different. You have the iceberg cold front as you pass each other in the hall or going by their office door and the apbrupt disconnect when you transfer a call into their office. What is strange, however, is meeting where you both have to report of progress or issues that you both might be working on. Like last week we hosted a focus group (she and I) and reported the results in Staff meeting this morning. There were moments when everything seemed normal when she and I both seemed excited and reported on the positive aspects lf the meeting. We have four more focus groups this week and the week is going to be busy. I am falling back on the great “Golden Rule”I will just treat the others as I would like to be treated. This is only fair and if I do that I will feel good bout myself knowing that I, hopefully and not causing any harm, I am not sure how this is going to work out but sure is awkward.

Kid Day Continued

Kid-Day Continued…

My mother has a private room. I don’t know if that is good or bad, having a private room sounds good but she sure seems isolated. She has a window which opens up on an enclosed court yard being used to day by smokers. The court yard is enclosed an has ample access to the sun. No wind, direct sunlight a perfect place to sit and hibernate and dream of Autumns long past. Mom continued to wake as we spoke. T’s hard to visit someone and not ask how they are dong. But as I have learned in the past couple of weeks every-time I ask Mom this question she responds by telling me just how much pain she is in an there is nothing I can do but say that I am sorry and move to a new topic.

I ask about the food, and says the food is good when she can eat-she feels she is still being affected by the radiation she endured a coupe of weeks ago. She hopes she will be eating better shortly. She fell Saturday morning getting into the shower. I think she was kidding when I asked if she was tripped and she said “maybe!!” Nothing broke but a nasty bruise. She shows me.

The phone rings and Mom starts to struggle to get the princess phone on the night stand behind her head. I move my power chair forward and get the receiver knocking the rest of the phone onto the floor. This has got to change. It’s my sister Irene one of her grand kids had delivered another child 20 lbs(?!! than cannot be right but is what I remember). I try not to listen finally opting to roll out into the hall and cruise a while. That’s when I notice that Mom’s room is right next to the nursing station where a gaggle or telling stories and yoking it up. They’re very loud then I heard the radio…Billy Joel, the Beach Boys and Meat Loaf and other choices of light to medium light rock. These are great sounds for me and my peers but for seniors from the twenties and before this music selection must be beyond weird. Mom told me she shad scrapped her arm on the edge of the wall in her bathroom. I opened the door and looked side and was immediately assaulted by the odor…it was “that” odor had long associated with Skilled Nursing Facilities (SNFs). The bouquet of fragrances rendered from feces, urine and disinfectant. The odor was a challenge but amazingly confined to this bathroom. I was impressed.

Mom finally cleared the line and we visited for a moment when my cousin ad her married daughter entered the room. It was getting busy. I mingled with them and they with Mom- they left after short—or long- twenty minutes—Mom was beginning to doze so I took my time to leave as well. I took my leave promising to call and visit next week. And will visit next week and the week after that. This is my new Kid Day, my way of paying the debt and being their for mom as she always was for me. Kid days never end…

Kid Day

When my kids were small and living in the same city as me we would do Kid Day every Saturday. I would drag my self out of bed fairly early for a Saturay morning and, shower dress and try to get over to the kid’s place about 10:00 to grab them and be off for what ever a single dad with a car load of kids which might be fun and on the cheap side. Wow, I thought those day were over with kids grown and living in other cities in other states. Those kids living in my city usually work on Saturday or seem to be involved in their own lives. Which s fine and cool with me. We see the one granddaughter frequently and the other granddaughter is small yet and we see her only when Mark brings her round. I don’t know quite yet how to be a grandfather—or a good grandfather. The only guidelines I had was my Grandfather Joseph. I loved and love my Grandfather Joseph. Grandfather Joseph was a Mormon, a devout Mormon. When I was very young Grandfather J. lived in the same city and I did not see him often then they moved away and I saw them ony weeks a year. I saw my dad’s Dad Granddad Charlie even less. Granddad Charlie lived in Canada and we saw the once every couple of years. But these are other stories I will get to one day—suffice to say. I am still learning my parental and grand parental roles.

Today was beautiful, a perfect Fall day. The air was chilled but bright and clear. No question of the seasonal change now. Summer is gone gone. The frost has visited and the leaves which were questioning whether to turn or not have gotten their “turning orders” everything outside is beautiful. Today was the day I was going to finally visit my Mom in the LTC(long term care Center). I delayed the visit by an hour or two by stopping over at Al’s, my neighbor.

I actually drove over to the Center on surface streets not trusting my wheels for Interstate travel, just yet. I finally made it out to Sandy about fifty block south of my home in Murray. I really am not conscience of my disability too much but I can tell visiting my mom is going to make me so. I downloaded from my van and went into the building. There were staff out back smoking : young folk sentenced to a job they would never have considered except they were desperate for rent, care payment school what ever. They eyed me like the fish who had got away.

I zoomed up the walk and into the building up to an abandoned front desk and signed in. A nice building, the odor was not present I have grown to associate with care facilities. This is good. I wanted to find my mom’s room on my own but finally had to ask and then was led through the building to room 302.

There she was laying on top of her bed. She seemed small on that narrow little hospital bed. The TV hanging out of the ceiling was on the Hallmark Station and is Hallmark’s Western Saturday: cowboys in great definition blowing people up and riding horses in deep snow. It seemed an odd viewing choice. Mom was sleeping or dozing and I called her name and she stirred, opened her eyes and finally registered that it was me sitting infront of her and not a dream. To be continued…

Friday

I Didn’t Do Anything wrong!

I pride myself for being to able sense and stay out of office politics and personality storms but boy I got sucker punched today. Just amazing. Somehow I have really offended my office mate. She confronted me this morning for talking about here with the boss. Apologizing, weeping and so on, really throwing the guilt; of course I tend to get caught in these things and have been rehashing the event the rest of the day. I sift through everything, the boss I talked to, what we spoke about and I come to the conclusion: I did not do anything wrong. I perhaps should have shut the door while visiting with the boss then huge ear in the office would not have heard then I turn into one of the “Skulkers” which presupposes wrong doing an I have not done anything wrong. In fact I have gone out of my way trying to assist and defend my fellow employee, who has chosen to leave our facility. I have even giver her impeccable references, which I am hoping will get her hired away from here as soon as possible. I have taken numerous calls from network, she takes man\y personal in a days time, I have covered for her on numerous occasions when she has been late and have allowed her to leave early countless times to get to family responsibilities or just because she cannot stand the office that day.

Yup, I got too involved in allowing her graces others in the office would not get—actually the new boss saw through lot of what was happening and started putting on the pressure and the lass has bolted. So, I will pull in to myself, do my work and keep socialization to a minimum. My partner had a fairly long meeting with the director this morning ( behind closed doors). I am not sure how that went and you know what? I don’t really care. I am sure I’ll have to suffer the details one way or the other.

Refocus, refocus try to see the good side of this “it’s all good” event. I have the opportunity to forgive and forget..I can be the adult—but that might be pushing the envelope of believability. How would I deal How

with this mess if this was my daughter I was dealing. First off, my daughter IS the adult and this would never have gotten to this point. But if it issue had gotten to this point, I would give her the space she needs and I need, try not to aggravate and try to be as understanding as possible. So, this is what I shall do and see what the space of the weekend will bring.

The temperatures are dropping, dark clouds are moving into the valley. I was I the canyon of the downtown buildings over lunch and the wind was cold and whipping the leaves from the trees. I am wearing my down jacket, the one where I can pull my head in like a turtle. I am afraid I’ll soon need my gloves.

Guilty

I cannot lie. I have never had the ability to lie. Sure I have tied but I can always be “made out’. I have the look, people can tell. I experience too much guilt. So I don’t lie or try not to. I also hate it when people involve me in their secretes and their lies or deceptions. This whole thing at the office with my office partner (OP) and her searching for work has put me smack dab in the middle of deceptive behavior.

I get to work early usually 7:15 am or so, the Boss is usually in the office at this time or soon after too and we talk. We actually brainstorm or discuss significant office events of the week. Well, Monday the Boss asks me if my office mate is searching for work. I did the eye shifting to the floor thing, cringe an finally spell my guts-sorta. It’s not like the girl’s behavior has been odd. The boss had already figured it out. The door shut all the time, especially right after phone calls, showing up the office all dressed up, become isolate she is clearly separating herself from the rest of the office. She should be wearing a giant sign which says “I AM LOOKING FOR A JOB!!!”

I really think the boss has been very cool about the whole thing, she has not been punitive and has stayed out of the employee’s hair as much as possible. The boss does expect her to put in a day’s work for a day’s pay. So, today I am on the phone with a chronic caller and I start getting Imed from my partner about have I told the boss that she( my OP ) looking for work. I take a deep breath and reply “YUP” then comes the ‘ whys, what did you say, how com, is she mad etc’ really just to much drama. Now, I cannot focus on my chronic and the chronic knows I am distracted because my replies to her comments do not make sense even to her( the chronic). I just star at the screen and think “what a creep I am” Then she takes off to lunch and just about an hour later I get a call from her saying she is sick and will not becoming back in this afternoon. I cannot say I am surprised and that is OK by me. I was not looking forward to being guilted all afternoon.

I have been stewing about this ever since. I vindicated myself by rationalizing to myself: I never wanted in on her secrete life, I never begged her to advise me on her job search and I never oathed to her I would keep everything she told me sacred and secrete. I am OK myself and that is that. I think I did pretty damn good keeping it as quiet as I did. She is the one who is leaving and I am staying and I am going to have to shoulder the load when she goes. She is a great worker and I have few complaints about her and I have given her rave reviews—which I really believe. She will be gone soon and I will miss her. She has too many skills to hang out their on the job tree too long. I just hope that she will find what she is searching.

Autumn Run

I was raised on a small farm two and half miles South East of Boise, Idaho. It does not seem like a long way now but the distance seemed epic. We were bussed all he way into the city for school. You had better catch that bus or Mom would have to drive me in and that would not have been good idea. The bus ran a pretty tight schedule and there was dependable to be at the bus stop each day very close to the same time.

The bus stop it self almost was a half mile from the house—the quickest way was cutting through one of Gale John’s alfalfa fields. Again, we knew how long it took to get to the bus stop and when the bus might me coming. I generally ran across john’s fields to the bus-stop. I must have known how long this procedure took. I am sure I must have “clocked” myself when I got a new Timex watch somewhere along the line off my youth, but I have not a this late date I have not a clue. I can just barley recall early Autumn mornings, leaving the front door in jeans, flannel shirt and “DI” Converses. Books under my right arm with a paperback lunch dangling out of my hand. I would cross the dirt road which passed the North side of the house, bend down and pass under the fence and launch of across the field.

Late October the sun had yet to crest the East mountains of Boise Valley maybe in an another 10 to fifteen minutes. The evening had produced another “hard frost”. The white feathery ice covered everything. I am running now, the cold slap I felt when I left the house is a memory, my wind comes out in strong gusting jets as I push across the field. I am already hot but I can still feel the cold on my cheeks, my nose is cauterized and my nose hairs ling when I draw a lung full of raw cold morning air in through my nostrials and exhale through my mouth over and over again.

I vault over the first ditch barely breaking stride. I am startled when a pheasant bursts from cover as I hurl over the ditch. I am hot now, my breathing is regular and I can see some of the other kids who catch the bus at the same stop milling round but not in line, the bus is not in sight yet. I figure I am OK, time-wise, I come to the second ditch and fly over it and continue on. I finally reach the bus-top, out of breath but in time for the bus. I look down Boise Avenue and see our bus coming round the corner. The milling kids begin to form a line. The huge yellow Blue Bird bus lumbers to a stop in front of the line, the door open and we climb aboard. The driver has the heater revved up to “high” it’s a blast furnace but I m lucky enough to find a seat next to a window, a cold window, and lean my cheek next to the glass and close my eyes and doze my way to school. The sun was just cresting the mountains.

Tuesday's Gone

This Tuesday is nearly over and I have yet to hear of any progress on my van. I called asking about the van’s status and I heard the owner say ,in the back ground, tell him on my way to pick it up. This was after I had called this morning to be sure something would be done on the vehicle today. So I doubt anything will done on the van today. I do need to get out and see my mom though. Have yet to get up to the Care center. The morning was cold this morning when I started out and there has been some rain today but seems to be clearing out now. I think it will be cold going home but I’ll be dry.

We had the focus group today. I have to admit the focus group went off much better hen I had anticipated. We had a good turn out too. I would have liked to see a few more folks from the service providers but we had Some “players’ though, MDA, MS, and UCP and Independent Living. Over all we got fairly good strokes. Most folks though we were doing our job but we also got some great advice as well; If we can implement these ideas this may shore up our standings in the community. It seemed that one of our funders seemed a little squirrelly but she gave some good feedback and I feel she felt heard.

My partner here at the office has not been very happy here for a long infact she has been very active in searching for another position in the State system. In fact, I think she is close to landing a job, I doubt she is going to be happy with the position but she will be out of here. I kinda of hate to see her go because she is such a good worker. But and suffers from “the grass is greener “ syndrome. I was called a few minutes by her potential employer and all she needs is to submit to get her finger prints taken and I assume she is gone. In fact the employer asked if I would weave her two week notice. I let him know, that two weeks would be nice but I could live with her leaving at the end of the week. So, that leaves me short and I am not sure how my management would want me fill the position. We could float the position till even the end of the year and save a little money or move to fill it immediately, I am just not sure if the stress would be worth the gain.

So another night of poor television , thanks to the Playoffs or the Series or some other stupid sports thing. How do people cope with sports-organized, professional sports? I sports is the bane of my life—luckily I am in the middle of Stephen KING’s Needful Things, a good enough read for cold Autumn night.

The Scissors

This I do not know for sure but I would not be the least bit surprised that when then whirlwind of the picked up and left my Aunt’s home, they had in their passion a pair of humble black handled scissors. Just regular old scissors, but scissors my aunt says she has to have back as soon as possible. When I interrogated the brothers and sisters, sure enough they smiled maliciously and produced the cutting devices. I waited till after the crew had left and Dianne calle my aunt and advised her we had the cutting tool and bring them back the next day, Sunday. Dianne skillfully defused my Aunt, who had been significant stress from everything, made my Aunt feel valued and revered both of which she is by us.

woke to find Sunday one of those beautiful autumn Sundays, brisk but warm in the sun a good day for a road trip. We wanted to drop off the scissors around 11:30 and be back in Salt Lake by 1:00—I still wanted to visit my Mom in her new surroundings. We were excited, as we got ready, my brother had brought a bag of tomatoes-a huge sack of “beef steaks” and we were going to give the Ancients a small basket of tomatoes with the scissors.

We were on the interstate headed South maybe ten minutes when the van was racked with a knock which sounded like we had a flat tire. We were just before the 10010 South turn off, it still took us forever just creep off the interstate. We finally found a place safe to park and download the wheelchair. When something like this happens one has to take the “high road” or the depression would justnock me out. Dianne always says, ”probably saved our lives” plus the fact the breakdown occurred while we were stIll close to homer and close to public transportation. We ended up walking(rolling in my case) 10 Utah blocks. We were hoping to catch a bus but one never came and eventually we found a train station. I was in the “Red” of my power indicator not sure I was going to make it home. The train got us to our home station and the we jumped an “inbound” bus which got us close to home. I made it—Dianne was getting pretty tired toward the end of our walk and a cool wind blew up and clouds began to march across the sky, sure enough, a storm was coming in.

Dianne had to crash, she was exhausted. I worked on the computer, blogging and downloading images for the blog and waited for the time to pass. I made the call to my Aunt at 4:30. She figured something had gone wrong and was worried—I should have called earlier. She said not to worry about the scissors or at least of bringing them to Santaquin. Aunt E felt that if we got the scissors to my mothers care center Aunt E would pick them up there when she came in to visit my mom later this week.

I was surprised when I saw these scissors—there seems to be nothing special about them except they are hers and she needs to be validated. We all need to be validated it’s only right.

The dinner

The movers finally the trucks unloaded and the Uhaul delivered to its resting place and back to Dianne and I waiting in our van. The plan was to meet at our house then do dinner. But we figured we would meet them and the guys could follow us and then they could leave right from the restaurant for their respective motels. The Shang Hi is way north then our house and would be a ways to have to come back. So, we caravanned into Salt Lake and down to the restaurant

Being in charge of the restaurant is always such a risk—but everyone said they liked Asian and so I picked the Shang Hi on Street and 1700 South. I love going there with a crowd and sitting at one of their round tables. As soon as we entered the placee my fear of having selected wrong went out the window. The aroma of the shang Hi won the movers over as soon as they inhaled the atmosphere. The hour was still relatively early so there was not a huge crowd in place. They set us at a round table, as I had anticipated and hoped they would, Dianne and I ordered three orders of the egg rolls, huge deep fat fried egg rolls stuffed with Shang Hi’s mysteriously lovely filling. The egg rolls were a hit and soon everyone was chomping and talking. True the chomping would have been a bit more fun if the restaurant had wine available, but we got by. The orders them selves were great, beef and broccoli , shrimp, chicken sweet and sour more. When the meals arrives we had a feast before us. The food was placed on the Lazy Susan in the center of the table and everyone dug in. The meal and conversation was great. These guys had worked so hard and done well…a surgical extraction, mom had to buy furniture, and gets the items stored and moved into her new place. I am sure Mom is still feeing the discomfort of the move and I would not be surprised some feelings of betrayal from her family. I hope she is able to make the transition. She was tired last night when they had left her in her new room. I still have to visit with her.

Dianne took off this morning to take aunt Elaine’s scissors back but just as we got on the Interstate the van started making a horrible knocking. We parked the vehicle and walked to a train station and finally got home after hours of walking and rolling. I am had enough power just barely an Dianne did OK. We stopped at the Villiage Inn for dinner and later for Chia at Salt Lake Roasting company.

I should be more upset about the vehicle crapping out on us but we were able to get back OK, the weather was nice and we were able to have a great time being out with each other and like Dianne says this event probably saved our lives..

The Move

Today's the day. The move is upon us, most of the Fourth Estate and some of their extendeds have arrive as well. Today at 11:00 someone one is bringing Mom to check in at the care facility—like at a hotel you never leave. Paul , the oldest younger brother, called last night when we were at KFC; just sort of checking in gave me some idea of what event were happening today. I did not get any orders so I am somewhat off the hook. The kids are staying at various motels around the area and are all focused on the move.

We have Auni and so we been focused on her but, as the day winds on we will be interfacing with the move committee one way or the other. If nothing else the committee will bring the electric hospital bed to drop off somewhere in our garage be cause I get the bed.--This is all do weird. I am guess I got the bed but I do not know that I need it...just yet; even if I did where will I use it. We currently sleep in a “king”and I dread going to something smaller but the space created in the bedroom would be nice. But when you add a hospital bed to anything you eat a lot of space.

I just took call from Paul and they have done the deed. Mom is at the center and the kids have been cleaning up the room and the garage. Sounds as if some things were taken ( a pair of scissors) we will just have to see what we can find when things are unloaded. All of the stuff under the sink in Mom's bathroom was left but my aunt indicated it was not important to come all the way back to fetch the materials since mom would not have need for them at the Care Center. But she would need the scissors back because she uses them every day. Still no agenda as to what , if anything thing, is planned for this evening...sounds as if the movers all well be pretty tired. No word from Mom or Leah who took Mom over to the CF at 11:00 so i guess all is well there. We have been madly cleaning, pretty much topical but enough for a brief brush by or drop off. The call from my brother was a signal or warning they are on their way.

The did the drop off, low stress and actually fun all things considered. Too rushed to make any really connections but there is the promise of dinner to come—looks like Shang Hi, one of my favorites. Dianne is making the call to the ancients with promise of returning the scissors tomorrow and doing some damage control and healing. So, looks like something is going for tomorrow with the Southern Ancients. The event is now, nearly done. The family has taken care of it's own in it's own way. Some fur has flown but not as bad as I had anticipated and the time will be the salve needed to finish this process.

I See Realatives

They're coming. The fourth family is coming. I started getting calls yesterday morning. My sister calling to ask if wanted my mom’s hospital bed. The she let me know the whole fourth estate was coming down to move my mom out of her home into a long term/assisted living facility. This is a fairly large and involved surgical strike. Again, I heard of it the first time the day before and according to the sis arrangements and calls have been and furious all week.

But they’re here now. In fact I have been searching for a power wheelchair for mom on my used equipment bank all day. But she wants the chair today so she is purchasing some thing in Orem for $1000.00. She is frightened that all her belonging will be thrown away but for the most part she seems to be tolerating the move OK. I think when she gets her hands on the power chair she will be more at ease. The care facility is large and very spread out and she feels she will be able to negotiate the place with her chair. I hope this chair will meet her needs.

So my sister is renting a Uhaul, my brother has a; good sized pick-up truck so they should have the moving capacity they need.

Maybe tomorrow I’ll send over lunch or dinner for the movers and go over to the care facility ands see mom is settling in OK. I don’t know how long the family is in town but I guess they will move then be gone. I don’t know where they are staying or if there are any events specific to this event going on .

Dianne and Auni popped in the office over lunch, they went swimming this afternoon and sounds like Auni will be spending the night, which will be fun. I will probably spend most of the weekend worrying about the focus group on Tuesday. I do not want to invest too much stress on work this weekend. I think I’ll have my hands full with family stuff all weekend…or maybe not.

Here I Go Again

We just ended a quarter which means I must develop a report for my advisory board. This should be a fairly simple event. Hit a couple of keys and I should get a statistical document which will show increase of decrease in calls and the destination and where the calls came from. This is a fairly simple document but once again the soft ware I use C-base which has been which is a local operation, really just a two man group here in Salt Lake has crashed. This is a complicated story with a complicated history but the bottom line is I CANNOT ACCESS MY DATA! I cannot make a honest the report to give to my board. This happens every quarter. I have tried to go through our IT people but State IT is not supposed to work on the problem because the software is not sanctioned by the State. The IT person who answered my plea this morning did work with me (off the book) but we could not even find the Data base. Not being able to find the data base really worries me.

I called the developer we bought the software from and he is in Virginia for an extended period of tike because we donot need him as much as we need his techie man Juan. Juan really knows the software and has saved our butts ore then once when the software has crashed like what is happening now. Of course there was not immediate solution…”:We’ll get back to you” solution. I call this guy 98.6 cause his name is Keith calls me back to say that Juan will be at my office on Monday about 12:00. Great he is going to charge me 25.00/hour and still has to break into the data base. This will leave me less then 12 precious hours to formulate some sort of report of this data.

I have had it though—this is manufactured stress and I do not need it. I know I can control better then what is happening here. I have decided to junk this software as soon as I can pry what data I can from the data base. Next I am going to the state to see what they use and see if we can get the same software to report our data. I assume since State uses this software they must also “support”. If this is not doeable then I am going to force State to let us know what software they will support and get it. I gotta have a data retrieval device which we can depend on.

I gotta call on my cell as I was going home tonight. The fam is mobilizing to move my mom this weekend. They were calling to see if I wanted her electric bed because if I did they would drop the bed as they passed our house moving mom from my Aunts place. So if mom did not have the bed I most likely would not have known at all. However, I was called last night by my brother Paul, but I missed the call but I suspect the call had to do with my mom’s moving party tomorrow. I do believe the weekend will bell a challenge.

MSThe Insidious Villian

MS the insidious villain

In another life I worked as a Housing  and Transportation Coordinator  for an Independent Living Center in this State.  I worked to develop more affordable and accessible  housing options for people with disabilities. Housing Coordinator was hard, but steady and somewhat enjoyable work.  One group of folks which always taxed my skills the most was working with folks who have multiple sclerosis (MS).
Multiple sclerosis is an insidious disease which knocks a person  then lets them up then knocks them down again over and over again and the person with MS never quite gets back to their initial level of health.  The person with MS never realizes how disabled they are becoming needing more and more services and attention.

This morning I got s call from a consumer with MS’s sister who is trying to manage her sister’s disability, the sister’s desire to be independent and her sisters frustration being confined in a long term care facility i.e. nursing home. I  actually spoken with the sister last summer when the sister  was trying to survive in the community.  I had encouraged her to try to be as independent as he could  and to look for options. She did not make it and now the sister is trying to clean  up the mess.  I was a little worried at the beginning of the call thinking this caller was going to crucify me for giving her sister hope for a better quality of life.  I guess I am still a believer, thinking the system can be better then the system is. I know I am a cynic but I am still  a believer.  I ended up visiting with sister for a very long time. I infected the sister of the woman with MS with hope. Is that bad? I unrolled a solution or a concept of a solution which could assist people with disabilities like her sister has live independently as possible. The systems and programs are already “out there” in the community, well hidden, just waiting to be found and developed.  These programs do not know they can be used in such a fashion  to enable these folks with disabilities a new lease on an independent life style.   It just so happens, the women who called me is a realtor. She know the systems for home owner ship. I let her know that she could develop a plan to assist her sister purchase a home  and open t up to a couple of other folks with disabilities , they could all invest in not only the home but also in getting some attendant care options  and they all could live institution free and much more independent then their options currently are.   Now, MS is progress. Once you’re diagnosed your going to die, sooner or later, it’s just a matte of time. The beauty of this plan would be  when  one of the “home owner” kicked then someone else could buy into the house.  Sadly, there is always another  MSer out therein the wings.  I know this sounds a bit cold  but it is a much better option then most MSers have currently.  

I advised the sister to contact the local IL and to work with them to develop  this plan.  I also told her she should twist the multiple sclorisis  society to get off their collective butts and channels some of the money the MS society is always raising into some real client housing services. I’m in big trouble.

Hey, Am Just Working Things Out!

I just love rattling on about my family because my family is so weird. I have been thinking about my family a lot for the past couple of years. I think it was at a family reunion three or four years ago that I realized that my brother and myself were really the only real adopted kids in my immediate family. I used to go on and on about everyone in the family was adopted one way or the other; about how my mom and dad blended their families together and adopted each others kids when they married(4) and then adopted the rest of us (6). The at the reunion I noted that a couple of the cousins at the reunion were actually mothers of my four younger sibs. I knew this on a basic level all along but never really thought it threw to it reunionistic level. This blew me away and still does as I sort through the whole end of life experience of my mom.

So my family is actually three families( four if one counts my oldest brother).

First {First Family Oldest bro( My moms only natural child)

Second Family{ Oldest sister, Next oldest sister then second oldest brother( all natural siblings)

Third Family {My older brother and me

Fourth Family{Two younger brothers an two younger sisters who are actually cousins to the second family= 7 kids = Family Prime.

I wonder if, because my mom and dad, are the only mom and dad by older brother Ross and I have ever known, is the reason I seem to be so wierded out on this whole end of life thing. The four younger kids all grew up with the family but also were aware of the cousins who were also their natural mothers as will as the sibs in those families. I have to admit to a little envy as I saw all these relationships playing out. Don’t get me wrong, it’s not like we ( my brother and I, family number 3) from any events…except when I almost missed my dads funeral because everyone thought someone else had called me. I think we all really do love each other and we do enjoy being round each other and we genuinely see us all as family.( I am not even going to try to go into the Mormon concept of Sealing this would really alter the discussion) . I know I am perseverating on this issue with my mom. I don’t know what else to do. I guess perseverating is the only way through for me. This cannot be any worse then the stupid baseball playoffs. Suffice it to say I love them and you all very much as much as a brother can. The same love I have for my mother. I worry about Mom and her current predicament and wish there was more I could do. Maybe I would not feel so obligated if I did not live in the next county. But I do and I guess that I am and will just have to work things out. One way or the other.

End Game Part Deux

I did not hear from my brother on Saturday so I figured he had his hands full and he did. I figured mom was in the hospital somewhere in Provo and I would drive down and visit on Sunday and Monday, since I would have Monday off for the holiday.

On Sunday I was able to get hold Carl and he let me know that the hospital sent mom back home. Poor Carl, he is such a good guy and our family is truly lucky to have him. so, Mom is doing better and she did go back to her home... for the time being. Mom is now finished with her cancer therapy the docs indicate she will get stronger and feel better. There is still the issue that she needs to move on to an assisted living or long term care facility. My brother is making the arrangements and doing all the work. Of course there is only so much a person can do on a weekend.

I called and got hold of mom yesterday in the afternoon, our regular Sunday call. I was surprised as how well she sounded and stronger then I have heard her sound in some time. We had a good conversation. I tried to hear he discuss the relocation to assisted living but it did not happen. I just could not bring up the move. Mom will bring it up it is her time.

So the endgame has started brothers and sisters, who wish to be part of the event, are alert and standing ready for when they are needed. I wish we were physically closer and the Aunt and Uncle did not have worry and stress about the whole event. I do not know what will happen when the endgame is finished. As for Dianne and myself we wish to continue our relationship with each of my sibs as well as our relationship ship with my aunt and uncle.for as long as I have access to them.

End Game

I called my older brother this morning , fairly early but a respectable time. His daughter has cancer and was to go in for surgery earlier this week. We have not heard anything. My brother is a very busy guy. I know he is dealing with his daughter as well as mom while trying to maintain his full time job. I figured if something grim were to happen I would hear soon enough. It had Eben a week so I called this morning when I was up and dressed and got many sister in law Jean. Who proceeds to advise me that during the night my mom, in extreme pain, had to get to the hospital. Mr brother had the sister and brother in law call 911 and went over this morning early. Jean promised that my brother will call when things stabilize.

Later on I got a call from my little brother Paul, to advise me of the events happening. I advised him that I knew but appreciated his thinking of me. I think my family has been reading my blog more then I realize and now seems to be making an effort to keep me up to date as to happenings with my mom. This is weird since I live forty-five minutes away from mom and they live hours and hundreds of miles.

I understand that getting mom into the hospital this morning was quite a job. It took four people to get mom in to the ambulance. I doubt my mother is ever going back to Santaquin home. My brother feels she has been aware this day was coming for some time now, the inevitable. Long term care but in this case short term. I donot think my mom has too much time left on this Earth. Since last week mom has had to double her pain meds. Dianne thinks the care facility is performing just palliative duties. It's hard to say maybe mom will stabilize and go on for a couple more months.

My brother informed me he was planning a trip down and that my little sister would be coming too to begin sorting through mom's stuff and cleaning her room at my aunt and uncle's house. I had not even thought this far ahead but the bro and sis seem to be right on point. It's just real important to get this room and things cleaned out. So who knows how many family will be in the area in the next couple of weeks.

So, I am going to have to go over to the hospital soon and do the visit. Maybe tomorrow. If I feel up to the drive. Dianne has her hands full with Bridget who has been having some significant health issues. And who knows what is going on with my butt. I have been on the meat all day and I am sore. I am going to have to give the rear end rest. I was able to get some shopping done pick up the meds and gas up. Do, I guess I am ready for the end game,

Butt What?

I like to think I am really OK, that my spinal cord injury has run it's course like a 40 year bad cold. I like to think that I am some how....better. I just cannot walk or grasp but basically I am better I got off the toilet. And there was blood on the seat. I did not feel wound anywhere. I looked an still could not find any place bleeding. I sue it is something to do with my butt one of the worse things that can happen to a wheelchair person—since I have to sit all day as long. I hate to lay round so, if I have wounded my butt I am in big trouble.

What really freaks me out though is why did I not feel it happen. I am Mr Normal, why is this happening to me? It's because I am not Mr Normal, I am not better and I had better damn well be careful.

So it's back to pressure releases and being careful with my skin and being mnore of a crip then I would like to admit that I am.

I like to think I am really OK, that my spinal cord injury has run it's course like a 40 year bad cold. I like to think that I am some how....better. I just cannot walk or grasp but basically I am better I got off the toilet. And there was blood on the seat. I did not feel wound anywhere. I looked an still could not find any place bleeding. I sue it is something to do with my butt one of the worse things that can happen to a wheelchair person—since I have to sit all day as long. I hate to lay round so, if I have wounded my butt I am in big trouble.

What really freaks me out though is why did I not feel it happen. I am Mr Normal, why is this happening to me? It's because I am not Mr Normal, I am not better and I had better damn well be careful.

So it's back to pressure releases and being careful with my skin and being mnore of a crip then I would like to admit that I am.

There Goes The Canyon

One of the reasons I love working downtown is because of buildings—there lots of older building, great architecture and “sky scrapers” as big as you can get in a city this size. We had our own little “canyon” as I have heard downtowns described on TV. True it’s a mini-canyon but it was my mini canyon and love it. Well, a portion of my canyon is going away. The talk of local news, all week long, is how the local church—who is a major power base in this community has developed a massive plan to build a “ new downtown”. The Church is going to bring down a couple of the older building to make room for the construction. The result will be an “open down town”. The initial artist conceptions have been warmly embraced by the community. Lots of green space, airy walkways and possibilities. This is what the people want it sound like but not me.

I am afraid that each new downtown remodel will have more and more “open space” sun light coming in all times of the day and flowers everywhere. The romance will be gone. The tall turn of the century buildings, with the “gingerbread” moldings, gargoyles and faces sculpted into the properties. The sidewalk spaces where one can have coffee in the late morning and not have to block the sun for your eyes because the building did that for you. In winter when the dark comes early the light from the windows seemed to welcome me as I sped through the city streets heading for the train. I love sitting out side the building looking up and seeing snippets of building life through the windows as workers continue to labor into the early evening. Each downtown building seems to dress up differently for the holidays season, lights, signs and huge trees on the tops lit up celebrating the season. I will also miss the “secrete” restaurants, diners and coffee shops hidden in the bowels of many of the buildings. Sure the is supposed to be new restaurants and eateries when the new space is built but the items will be priced out of reach for the casual dining experience. The mom and pops and one of akinds will be gone. Chains and high ends will replace the old guard.

I hate progress if progress means loosing the flavor of the city. I am suspicious too. I wonder if this “renewal” is similar to what happened in New Orleans is this rebuilding just a way to move the lower income an no income folk out of the Downtown area. I would not be surprised if this were the case. You know there is a great fault line which runs through this city. A great fault whicis supposed to slip one of these days. The geologists say the slip is past do and the results will be catastrophic in trauma similar to N.O. but our population is far less. So, until then I uses the city will just do the rebuild and slowly my canyon will go.

I Am Not A Rock!

There was a comment made at yesterdays question and answer session of my presentation which has been intriguing me ever since the guy made his remark. We were discussing the ebb and flow of people in groups and how this affected egress. Remember? Egress, the movement out of whatever. People in groups, when moving seem to move in “streams” They move at a constant speed which everyone seems to unconsciously mimic. Add to this flow one or more people in wheelchairs and suddenly the “stream” begins to back up and even dam.

Walking folks slow down when they encounter the wheelchair user in the hall. The guys are the only one who sees the wheelchair folk. The people behind the first start pushing feeling the guy up front slowed down just to be a jerk, and the people be hind then push even harder. This happens until a major congestion occurs. The guy said “Wheelchair chairs in crowds are like boulders in rivers. The people have to work their way round the wheelchair like water round rocks. In fact the crowd does not have to be moving. One of my pet peeves is being one of the first to a meeting, conference session or what ever and the person in charge forces me to sit up front. I can resist but then I look like a complete asshole, you know one of those crips who have not coped well with their disability. You cave in and sit up front and sure enough the people who come after fill up all paths of egress. If you have to go to the bathroom or leave the room for any reason you literally have to “part the Red sea” to get out of the room. This same issue can actually be dangerous if you or on the floor at a concert, sports event and you are then dealing with dangerous options from people being dropped on your head as they are carried over head to the mosh pit to being wiped out by an athlete being hurled threw pace for one reason or another.

I don’t know yet how to resolve this issue. I even considered at one point “wheelchair” paths like even “wheelchair: paths could be a reality. Would this not be the first step to segregation? Is this an example where sergeration might be OK? I just don’t think so. The answer would be to teach our culture patience and consideration of everyone—regardless of ability. Did I really just right that? Gag!
I sound like a tag line for a public service announcement. Maybe feng shui. Maybe Feng Shui masters could lay out egress plans for major events.
When the conference participant made this comment something , deep inside, crystallized, deep in side me. I have always felt like the rock in the stream; even though there was humanity all round me, bumping me, pushing me out of the way and sometimes even falling over me I was always alone, way alone for almost 50 years now… “I am a rock, I am an islandAnd a rock feels no pain, and an island never cries.” Simon and Garfunkel…..”I Am A Rock”

This Is Getting Old

The boss just left, again, for a week or so, leaving me in-charge. The novelty wore off the last time I was left in charge and now the added weight and responsibility is becoming somewhat vexing. It probably would not be so bad if I were a heartless bastard and did not care what staff or anyone else thought of me but I am not, so this added responsibility is just stress I do not need.

So now as I try to get ready for my advisory board meeting and focus group I have to beware of what the other staff is doing and hopefully moving the office forward with the office’s many agendas. I mean really, I know my weak points and managing is one of them. I just hate telling people what to do. What’s really strange is how I already feel like I am being treated like a boss: people making wide paths round your office door, doors closing and whispers all through the office. I am getting management paranoia ( are you talking about me?). Two of the staff ( my staff?) are opening job searching and interviewing. I do not think it right for them to be doing this on company time but at the same time it would be better for all if they were to move on to place where they might be more happy. So by not preventing from these interviewing I am still supporting the office with it’’s mandate. Though, granted in a round about way. Is this one of those bank robbers can justify robbing banks” questions?

One of the many tasks I have to do before the last of this month is to develop a survey to send out to participants in our focus group. I am using Survey Monkey .

Survey Monkey(SM) is a very neat website which allows an organization/person to design and administrate surveys. They even give people too cheap to subscribe the ability to design a basic survey (up to 10 respondents). I got management to spring for a two-month membership. Two months will take care of our needs for this current project. SM does allows you to go month to month too if we need more time we can purchase more time. If you have survey needs I endorse Survey Monkey fully—can I do that?

Fall is kicking in full tilt now. Color is everywhere and the morning temps are cool enough to force me to wear a hat and a cloak of some sort. Most nights I make it homer on the train way before dark but on some night, like tonight—I may have the Russians—I drove my van up to the train station incase I get notified that I do have the meeting, which lasts till nine o-clock, I will not have to travel the back street home from the train station in darkness. I made a video of me traveling from my van to the mini-high block this morning. Since I do not know how to post videos on Blogspot I will have to refer you Youtube.com. I will try to make a link some how but I make you no promises.

Southbound to A.F

What a weird morning I traveled over to A.F. twenty minute interstate drive,

South, to the Alpine school district building where the fall conference of the UFOMA (Utah Facility Operations & Maintenance Association) was in session, in fact I was giving the first breakout session of the conference. I was not aware I was giving am break out session. I thought I was just giving a light overview of my office and what we do.

Well, I think I did everything right down to getting to the building a half hour early. I was able to netgotiate traffic perfectly, get to a bathroom and put myself back together with enough time to catch my breath. I finally checked in with the person who called me. The set me at a tables and said was on in 15 minutes. I was floored when I was given an agenda and saw I had been allocated 45 minutes to speak! I was set at a table in the front of the room at the same table of a fellow near my age with a glorious white beard and beard. In another life this guy would have made a great biker. I introduced myself to what or who turned out to Bud. I turned to him and asked…”what would do you want to come away from this presentation. He told me and what he told me helped clarify and focus my thoughts. The title of my presentation was “Egress and ADA”. Egress? Yes I know what the word means I just didn’t understand. Rather then try to bluff my way I let know that A. this was going to be a lot shorter then planned B. that there was going to be a lot more audience participation then usual.

What I learned was, egress maintenience meant to these people “How do you keep access paths open.” Great thought. I have never thought of this formally I fight the concept all the time. Nature abhors a vacuum! Produce a hallway or room free anything and there will be something placed there in 24 hours time. I discussed my agony with kids in public schools, the building might be accessible but the gym or auditorium is not. I had to always snag some buff parent to drag me up at least one flight of stairs to the auditorium and pray I don’t need to use the restroom till after the event.

It turned out to be a great session. I learned a lot and I think I was able to also able to give some great input. If nothing else I was able, to give these guys some perspective from someone who actually uses a wheelchair for mobility and give a face egress and how egress affects me daily. These guys want to be able to punish the people who make life difficult for wheelchair users and large hipped folks. They want real “Access cops” handing out real fines to those who block the way. Access cops won’t be seen today or tomorrow but maybe these 60-80 UFOMA folks will start the wheels of justice in their slow turn to someday make pathways free and clear for all.