And The Reslts are in...

And I do not know, I feel like I got knocked back a couple of months.. head aches, more trouble seeing, but the swelling in the back of my head is gone. Most of this is expected. I had been recovering with this large lumo of CSF in the back of my head and it wasputting pressure on everything. It is gone and I expected maybe a week of readjustment. I got it. There are improvement I can see for a little bit then they get scattered all over the place and I am lost. The Doctor told me of headaches, my boss told me about headaches, a nurse friend told me of headaches - thought there would be headaches, but not on the level I got and muscle aches where the fluid was. Of course, the fluid adjusted how my neck musles held my head, It is gone, now things can proceed normally. And that is exactly what is happening, so now I am on the true road of recovery. And yes the operation was a day surgery, I am at home.

Okay, now waht?

I have been following a bit of info that was discovered sometime ago by a Russian scientist concerning scotch tap - it emits X-Rays!
This info was finally verified, and it took so long maybe because they didn't want another of America's great enterprises to go under the different rulings concerning radioactivity.

And yes, I just got out of the hospital for what turned out to be a day only (Morning at 7 to night at 8). The swelling is gone, no the eye sight is not back, but I didn't even expect that, but the finally swallowing problem is gone...now I have to watch how much I eat, not have it restricted because of some outside source.
So all I will say is soon.

One More Time

This Thursday I will go into the hospital one more time at 7 AM to get a lumbar shunt put in my lower spine (lumbar, right?). This should relieve the swelling at the back of my head and allow my eye sight to return to normal. The procedure is short (1 hour) and I should be released from the hospital on the 31st (in time to enjoy tick or treaters).
Then we get to see how the recovery goes as far as eyes and balance. As far as I am concerned this is my last hurtle.
Thanks for listening.

Strangely sensitive

Well the hours are ticking away and the Hospital is trying to curb some of my joy by saying I will be restricted to the house for a while. In a word, no. But I will not be driving or anything like that and I will mostly stick to home, but I will be much more active than I have been here. Do not expect daily posts.
My main Doctor came by, like he has been doing on a very regular basis and made sure I was comfortable being released, the only one who did ask. Dr. Bhalodiya has been one doctor who I have been very comfortable with. He has a very current knowledge of what is going on and shares completely. He is upbeat, but mostly because he sees huge advances in medicine and he very aware of a lot of it. When I ask a question, he either has an answer or gets back to me. I am never stuck figuring out why by myself, which appears to be the current philosophy in a lot of doctors.
He is also very proactive and sometimes I don't like it, but it has helped.
This is the only recommendation of a doctor I will ever make, but it is my experience and it has been a good one. (Okay, I lied, I make another in the future).

In the hospital:
One of the strange side effects of this operation is I seem to be more emotional. Now is that temporary due to the swelling in the back of my head or a permanent condition. I do not know, I just know that I have watched several feeling good moves that made me cry and one very sad one that had me in tears. I always had some of that, but not anywhere near what I have ben experiencing. We will see.

Still working on me.

I had to delete something in my last post because I was complaining and it is someting I am trying to rid myself of. Afer more than 5 weeks in the hospital, not really complaining about much of anything, you would have thought I would have learned that lesson, but there is more to go.

For me at least I have all the Doctoers and therapist on the same page, that the problems I am still experiencing are really due to the sweeling that still exists in my head. The fluid is slowly going down and some days it does not seem measurable, but the double vision and the lack of balance are due to fluid still pressing on my brain and that is due to the surgery. The swallowing difficulties are also due to swelling still in my neck and throat, and that may also be due to the surgerythe lack of answers consti because most of the damage due to the reintibation is gone.
If you guys think there is a lot of self diagnosis going on, you are correct, I have come up with most of this with the doctors and therapist agreeing after. I am not sure if this inspires confidence for answers, bit I will say that thier methods to reach the goal was the most important and they all did that very well.
So when I go out of here I will be a slightly active person, cause I will work in my garden and will lumber around my house with out any mechanical or personal assistance. When I go out into the real world, I will probably use a cane untill all the swelling is gone, as much to tell other people that I am not quite stable on my feet as to keep my self balanced in a crowd.
So I guess, watch out!

My God, I really might be gettin' outtta here!

Friday, my last Friday! Yes, you heard me and there are actually some improvements in my eyesight My glass which seemed to be used for far away things appears to be used for reading agin (like they were a year ago). The Double vision still ranks me as disabled and I patch one eye to use the computer (with my now useful glasses)!
I am excited, I will have been here 39 days on Tuesday. I will have used 29 sick days ( I had 148?) and gained 2 more and will not be able to go back to work for a whille still.
I am axious to be able to go back to the garden again ( no one in the house is a gardener, but they try).
I can walk, slooowly, without any help or aid, but in the hospital they always want me to use a walker or have someone with me (of course).
The Therapy people have been working muscles that either I didn'y know I had or hadn't used much or had let slack during this long stay. They have been relentless and I am very happy for it.


My statement of the day, some people say I am too nice... they may be correct. Niceness can come from fear or it can come from strength.
After years of working on the weakness which most of the time manifested in uncomforatable explosions...those have mostly vanished.
I do believe most of my niceness comes from my strength of conviction now. I can be firm when I need answers, but I do not need to be mean, I can still be nice and thank a person for what they are able to give me.
I do not need to be an Oak tree, I can be a Willow, firmly rooted and able to with stand storms and trouble, but also very flexable. That is a goal, but I am becoming that.
I think that those who are always firm, might actually get blown down in a storm. A very old anoalogy. And my correllary is that they might miss something really important or nice for thier like by being so inflexable.

So it was for one friend, who seemed to be there, but got lost in the mist of this. I feel bad for her.

Again thanks for all who read this and all who responded, it was invaluable.

Philosophy

During this really strange time for me, I have been posting for to reasons;
1) to get my head together and 2) to make a record for me to see what did happen.
I am glad so many have kept up with this saga...but I know many of you would skim over the parts where I got 'spiritual' and I actually understand it. I will never try to make anyone believe what I believe, that just isn't right. What I believe and live with is for me and no one else.
As an example, one of the disabled people in my house is a professed athiest and has no trouble living with us, cause he is acepted as he is. With that, he doesn't try to change our beliefs either and our discussions become facinating. In our small community, there are many different beliefs, but one basic philosophy, we are strong enough in what we believe that we don't have to try to convince anyone we are 'right' and as a simple statement, we do not believe anyone has all the truth and that 'truth' can be found with anyone at any time.
Some of this comes about because of a simple discussion with my mother, who was reflecting on when I was on the fringes of the fundamentalist in college and she thought I felt closer to God then. My simple statement was "no, I was too arrogent then cause I really pushed my dad away with my strongness". I know the emotionalism was nice, but it was no indication of closeness and I know I am much firmer and much closer (If one can be) now.

One the other hand, the doctor was firm that he believes the double vision is primarily because there is still swelling at the surgery site and when that goes away, the sight will return to single vision.
Since I believe in all kinds of healing (including Doctors), I really am going to trust that this is true and I think I see improvement, but it is difficult to tell minute by munite, day by day.

Reflections and thankfulness

After everything, I stepped back again to see exactly what has been happening. It is sometimes neccissary many times because, my metal health is not always good.

1) If I hadn't had the surgery, I would have been dead or seriously disabled very shortly.
It is gone
2) the surgery has had two very interesting results, my blood pressure is now normal and I lost
20 pounds. (my doctor thinks it was the tumor, not the weight loss that changed the blood
presure and I will acept his idea for now)
3) The hospital stay has monitered my blood sugar like never before and basically, I found any
oriblems very simply controled -1 pill a day
4) My disabling headaches are gone - they were so severe that for 20 seconds, I couldn't open
my eyes and they might have killed me before the tumor.
5) The surgery did not affect my cognitive ability, nor my sence of humor.
6) The whole incident has given me a better emotional and spiritual perspective on things annd
let me not try to control so much.
7) also let me be more thankful for what I have ( I guess that is both spiritual and emotional)


The downside has been my eyes and everyone keeps tells me that will change soon...
But besides driving a car and working, a patch seems to let me read some cause I am getting along very well, walking and doing things without aid.

All in all, it has been positive, but I am waiting fir still more, so the story is not finished

okay the test results are in

and they show significant improvement even from last week. The only area we don't see an improvement is in the actual eyesight/double vision.
But ny compensation for it in being able to walk and do things has improved geatly. I walked with out a mechanical aid todya(yes, some one was watching out for me).
The therapist challange me and I challege my self and things do change.

A long time ago I spent two months in Va Beach snd loved it, after my Dad died, I spent some time getting my mom back there so she could be with her family and in a comfortable invironment and with her family (who are to numerous to count).
That is my future location, when Stamford finally lets me go, we all have a place to be together, and besides my mom's place, I have a place to be.
The area has a lot more people than Stamford and yet I have witnessed acts of kindness and courtsey that I have never seen in Stamford.
An example - a series of heay traffic mergers where everyone alternated so there was an even traffic flow and it was not because there was a cop or even traffic signs to suggest it, it just happened.
Yes, sometimes people do stupid things and there are accidents, but it is more becuase people are doing stupid things, rather than the blatant aggression that I see in Stamford.
People not only walk in the cross walks provided, but cars stop for them! Unheard of in Stamford.
Virginia Beach is a new city, incorporated after WWII, yet they seem to have found themselves and are comfortable with it, yet I know they go through adjustments on a regular basis.

Maybe Stamford needs a little more time to become well adjusted.

I must be getting better

After so much time, yes it feels that things are better. Questions I had about some results have been explained by my regular Doctor, not the ones in the Hospital (Ihate " I don't know" to my questions, especially when there is not an offer to find out). I have been shown where my eyes are actally improving (certain crazy pattern tests) and now they are finally talking of taking off the antibiotics I have been on and testing to see their effectiveness(they can't test while I am on the antibiotic). So things are looking better, thank God and everyone else also.

Stamford vs Connecticut

I just finished watching one of my favorite 'feel-good' movies , when fools rush in. Part of the reason it is a favorite is because they tipify CT people with money. This has been done many times before, including with 'Guess who's coming to dinner' from a long time ago.
The typification tho I think remains somewhat accurate: a little ecsentric, a bit self centered, a little out of touch, a lot stiff, but friendly, okay, a lot out of touch and self centered, and always trying to be nice and accepting and never quite making it because of the other issues. To me Stamford has been trying to break out of the mold for at least 30 years, but has kept the bad qualities and lost the quaint, positive qualities. So when people talk about Stamford and its problems, it kinda roasts at the heart. It wants to be New York, and that would br positive, I think, but hasn't quite gotten there and with a lot of people fighting that path, I think it has taken on bad qualities. So let us become a little New York, really. It is either that or go back to the sleepy little town it was 30 years ago either one would be better than its current place.

Funny, I almost never watch TV when I am home, now I get to see all the crazy different movies I never did before, example Dirt Harry, yea, I am a bit behind times.

Mean while, my room did not leak last night, like others on my floor, I slept well and I saw a little improvement in my vision this morning.

Thankful again

After a rough couple of days, I have gotten to the placeof being thankful, again.
It took my closest people in my life to help me out of my hole, but I am out.
Everyone who has seen me ober time if it is two weeks - wow you are looking so much better; a week, wow, you are looking so much better, 2 days, do you realize how much better you look?
This completely consistant across the board and, who see things moment by moment am not always adle to see there changes, except when I look back.
The most dramatic has been eating and the level that I can eat from even 2 days ago and now csn get into other parts of themenu that I couldn't even attempt before.
The other is my cough, and breathing which is definately improved.
The answers I don't have have to do with my hemaglobin, which is low and have never experienced that before and that does take energy. And of course my eye sight which appears stationary except that the positioning of the eyes is improving regularly and that might explain the whole thing since then my brain has to adjust to those changes.
Any way the important thing is the attitude and that will help in the recovery.

For all those who have responded, thank you. It means a great deal that you even read this long disertation...maybe soo, I'll write some more boring environmental stuff or give the health department a kick in the pants.

A step back but not backwards

Sometimrs it takes some one else to be in your life to let you see things as they should be.
In my life, I have a number of those p,eople, the people in my community and household, my mom, my girl friend, but there is one, who I sometimes feel my not be human, cause she seems more like a guardian angel than anything.
I met Margarita when she became the first clerical person in the lab, she was (and still is) happily married and had one child ( she now has 3). She was born 10 years after me, exactly, her mother was born 10 years after my mother, she came to Stamford from another country like I did ( well Texas is another country, really) The same year that I did. We visited the smae places, but never met before (and it is a good thing, cause I like her husband). To me, it seems like we are in parallel lives never quite intersecting. She advances to better positions and moved out of the lab, but we still take our morning break and will call each other in times of trouble. O f course, this caused the imature ( a lot of them) at the Government center to speculate, but it was emotional and spiritual, never anything else. She actually understood the manner that I live, because with her and her husbands family, they also form a spiritual community bound in this case by marrage. So there is alot of understanding.
Last night she stop by for just a moment, and gave her best wishes and prsyers and then said, you are going to be better. it was so authoritive, I think I cried for 30 minutes, cause it made me very happy.

The reality, as bad as my eyesight is, it is not the eyes that are damaged, it is the part of the brain that interprets thingss that has presure on it andis slowly recovering. No I can't always tell, it is slow and sometimes I have to be reminded to have hope, no it is more than just hope and I really don'y know what to call it, because it is a certainty that things will get better.

So, I stepped back to look and things do look better.

A special thanks to my gardian angel for that.

frustration anxious

Yea I started the day realizing I am frighten concerning the status of my eyesight. Things seem to change, but hten they don't and it has me worried. Without my eye sight I can not work, I ca not drive and I can not read and the last bothers me the most. Just talking about it and realizing it has helped. To go around with one eye patched is my current only answer to seeing double. That is not an answer to drive or to work. Do I really know what will happen? No, I do not and the chances that this will fix itself really exists, but the time it has taken, has also taken its toll on me and I am not so upbeat. This is where I am today.
I have been working at calming my self, which is no easy feat. I have been more jumpy yesterday and this morning, but have managed to use the many trick available to me from tea kwon do, meditating, some Budist sitting, prayer to at least calm that. Everything is naturally work, I do not believe in a 'magic' God, but I do believe in miracals, just we don't recognize a lot of them.
Any way more tomorrow or later.

My swalowing has been doing better and today they put me to a test to prove it so I can eat still more and less processed foods ( it was mashed or pureed or finely chopped) This had been tough, but it was not a serious issue, but a slightly discouraging thing - remember this happen because of complications during surgery, So what does it mean - gives me a boost emotionally. The othesr thing they have been pushing for 2 days has been expanding my lung use - also something that happened during the surgery - my lungs filled with water and they had to intubate me (?) And now they are pushing the nevelope on this. All good.

No more about my times in Stamford, I prety much have brought you the long journey through these blogs and exactly what I think of these people who now 'rule' Stamford. It does not mean ther are no good people, ther are lots of them' but they do not call the shots any more. When Stamford was the sleepy town that I first came to, things were beging to change-that was 1977, but most of these pople , the blue collar people and their children, were nice and you could get to know them. The journey that Stamfoird has taken to be a city has been a rough one and the first thing to go was niceness and that was replaced by an extreme selfishness. When it does become a city, every thing will be evened out because you will have room for everyone and ther will be selfish people and nice people and oblivious people, but it will be all mixed up and not one will dominate. That is my tiraid about Stamford.

Reflections

I have been very intense in the struggle of survival the last several weeks, working at physical recovery while I blog about who I am, spiritually, emotional, how my past lead me to little old Stamford and my struggles here.

The eye sight is still a mess tho improved. the ability to swallow food is really much improved and the pneumonia seems to be vanishing, balance and walking are improved, but I still need a walker to keep me on my feet.
When I first came here I was almost in a dreamland and at that time I was only working on me. and I am back to looking inside. See I can be very controlling and in some ways that is good - while here I have let thated part good, things happen at home and I am unfazed, I actually do not want to control anything. There was a short temptation to take things back, but I will not. People will fit or not into my life and it is better if I am surprised b that. I will not be forcing things.
The other part of me is very very impulsive, this will take more work and as I work with physical therapy, I can see how much I want how quickly and it just doesn't work that way. I have to slow down or I will fall on my face. Yes I can stand without support. but I need something near by to grab when I lose my energy. I want to run uo the stairs, but I have to walk slowly.

Back to Stamford, my involvement with the mentally disabled has always been positive even when things did not go that well, I could always learn and respect that they were trying to the best of their ability. These are people do not understand because they are different and don't always look so 'normal' and I relate to that. I also can relate to the working poor who are so plentiful in Stamford, that most of us don't even see as people passing us by. Theyexist and are mostly mistreated by all of us and some times even the rukes design to protect them.
Stamford is a very selfish city and one day when it grows up, there will room and acknowledgment for all these people.
Meanwhile at night I would continue to work with Scott, One of his companies was providing first class music for hotels and restaurant around the nation. He works closely with a restaurant group out of Greenwich called CB5.
He provides the DJ music to most of the clubs in the area including the GRAND, Twenty, the Dragonfly, Barcelona, Baang and many more out of the area. It is fun going to his special events and helping lug his stuff and dancing to his music.
I also am one of his IT people and things can be fun as well.

so maybe I know a little about Stamford, its nightlife and some of the drama that goes on in the restaurants. I do have some fun.

An d soon slowly, I will get back to it.

more tomorrow.

Improvement

Today has been a good day. Tho my eye sight seemed to take a slight step backwards from my view, apparently this is only an adjustment to the physical adjustments that are bringing my eyes alighnment to normal.
they took me off the IV antibiotic, and gave me permission to use my .walker unassisted in my room. Both of these item are huge. I walk an entire hallway using a cane. This was also huge. My eating has been better, but still has problems, there are improvements that I can see over time, but not day by day.

Afte St. Lukes the ones of us who stayed together still did things for the mentelly disabled population through Frank at family centers.
I also got a chance to hang even more with Franks' son because he was into music. He had a band called Rubin Kinkad and played sometimes in the hallway of the shoppes of olde main street under the mall particularly for park row grill.
Lots of fun. Scott also beceme a DJ and start working at willow street in Post Chester and Mirible in Stamford (long torn down, but on park place and used to be a comedy club) and the Art Bar also on Park Place ( now the spanish club). Stamford was not a happening place, but it was improving and was somewhat 80's in the downtown, but very limited.
I enjoyed haging out with him., helping lug his equipment and dancing to the music.
The one thing about Stamford and its restaurant and night life - it all ways changes and I WOULD SAY IT IS BECAUSE EVERY ONE WANTS TO BE ENTERTAINED and are very fickle.
What works today will not work tommorrow and that is really what Stamford is.
Somewhere in this time I lost my best friend, who was Frank's Father and 84 at the time. He died exactly yhe way he wanted to.. we were on vacation in Virginia, we had a seafood dinner together and the next morning I had to take him to the hospital cause he wasn't breathing right
He didn't want to go, but I took him anyway, and just 2 days later, he died.
He had wanted to be away fom his family, doing something fun with his best friend and he wanted it to be quick. He got all his wishes.
I only hope to be that clear and that fortnate when it is my time.

I do know I did not use any vacation time for many months.
Scott continue his sucesses and had several billboard top dance tunes with his remixes, then he went in to Raves.
He was firm his parties would be 'striaght edge' mean drug use was not tolerated.
The first party we through was in Norwalk at the Globe theater and we confiscanted 3 boxes of drugs because no one believed we would really be straight edge. I was working with forensics at the time and had them destroyed though our own police. Everyone was also surprised, they had fun even without the drugs and the party was monetrially succesful for us.
We ran a monthly party for some time before expanding. As a DJ, scott was in demand from Florida to England, but he stuck to places he could drive to. He ran parties from upstate .NY to Massachussetts to NJ.
He ran a massive party in Mass. wher we spent $120,000 on the event and lost $40,000 mostly because our compitision did not care to be staight edge or abour saftey ran 8 parties around us.
We were not going to compromise our standards and we could boast that in evrything we did no one ever was hurt at the event.
We ended our shows. Scott continued to DJ but was pursuing other thing which were more sophisticated.
I enjoyed all my time with him all while doing my thing at the Health Depatment and having at least one mentally disable person living with me. And I also started to go back to a church any church, especially a stuggling eposcopal chuch in North Stamford with a gay priest.

I am ready to go now

Yesterday I had the most energy since being here - I am ready to go.
I can't see right yet, but it is better everyday.
I still am not swallowing properly, but also is normalizing, but I don't know if I could control what I ate yet, so maybe a few more days.
I still get a fever, but I am not finished with the IV antibiotics, Okay so we let them finish.
he worst/best thing is last night and today I have been coughing up stuff. It hurts, but it really is a positive.
I still can't walk without a walker, but I coud do that on my own without help, just need the walker at first.
I had so little energy before that none of these thoughts were possible, falling asleep midsentence.

one thing to remember about St. Lukes is that there was only a core of 12 people running the programs, the priest from the 3 churches were not involve that way and the people of the neighborhood were involved in the places of their interest(no fault there, just reality) And the volunteers coming in from other chuches came at their convience (If there was a heavy snow on a thursday, that dinner woulf not arrive), And other volenteers came at a whim and when they realized that it was really work, many left.
We were there 7 years and the episcopal church decided it needed clergy to take over and we were asked to leave and we did.
They changed the name to St Lukes Community services, got lots of paid staff, left at 5, shut the neighborhood programs down and not only did not talk about us laying any kind of foundation, they denied we were ever there.
We all were hurt and bitter at first, but we let it go and that took time, we each greived in our own way, we did not work down their for us.
My self I usually stuff anger down and blow up at the wrong people at some time, I think I mostly just stuffed it down and nevef wanted to see the inside of a church again.
Most of the core people in the community stayed as a community, tho some went ther own way which was good for all of us.
Frank went to Family Centers to work with housing for mentally disable people. I continued working with the state mental heath association one might a week and of course the health department.
My parents came to visit. And I got to show them CT, then they moved to colorado after my dad retired.

all in all today feels like a good day.

So I guess the reallity is, I am anxious, I have been here too long and remember much to little of it. Sometimes it seems like a dream, somethings it just is not there. I wnat to go home to my garden and family and pets. i gave it all up for this time, now it is coming soon to have it back. But tonight I am getting really tired again and sleep will come quickly, before 9.

Good night all

More new days

Do I get anxious or board while here?

Yes I get anxious, they are doing tests, but don't have answers to where the fever came from...they have one bug, but it is not a clear answer. And the fever seems to lead to some messed up day time dreams and loss of energy and need to sleep. It maintains some level of confuson as to how long I will be here.

Where does that faith that I keep talking about cone in?

Noone ever promised it would ever be easy, any time any where - not Jesus, not Buda not any of the great Eastern thinkers nor any of the great american indian religions, none of them.

I actually think that if some one thought or said it would be easy, I would run, not walk away. I will also quickly say that I know I am like everyone else, I want the easyway out. And in this stay I gave that up at the begining.

Board? never, my life has never been board and even with my 'life' stopped dead in its tracks, I am not board. I can think of others, I can pray, I can try to peek at what God is doing and be mystified in a wonferful way cause I am not afraid.



When, I left off, I was an offical member of St John's Episcopal chuch and of course The community of St Lukes. EVERYTHING EXPRESSED IS STRICKLY MY OWN RECOLECTION OF A JOURNEY, NOT DISSIMILAR TO THE JOURNEY i AM ON NOW OR THE JOURNEY FROM HOUsTON THE STAMFORD.



More people came to help out in the ministries at St. Lukes and I do not remember the sequence of how they happened. A food co-op was formed for the neigborhood and we would go down to Hunts point once a week and buy things by the case and resell it at a 10% mark-up. People came and this got big. A small fee to join and people would come in and help setup and help sell and help clean up! It was exciting because it was something that was for people that was not an 'emergency' situation. There was also a free food pantry for those who really did not have that was also used alot. I loved working with the food coop, even getting up at 3 in the morning to go down to Hunts' point, where all these gruff dock workers wood guide us into the thins we should and should not buy and it wasn't always the cheapest, but they had a sespect for 'the church' and us and we had trust that they would guide us right. Mostly we brought back fruits and vegtables and learned about new fruits, the mango for instance, I had not seen before. we bought things that the people requested and then we expandend to cheeses. It was an incredible experience from start to finish, which was about 6 at Vakencias backery with a turniver and coffee. We unloaded and I went of to work and if I was a little late I would bring some fruit for everyone and work through lunch. I would get back in time to finish off the selling and clean up. t was wonderful.

A clothing exchange was set=up where again donations came in and we and helpers from the neighborhood would sort the good from the washable from the garbage. And agains we would sell bags of clothing the sameday we had the co-op.

Why sell? Weren't these people in need? Yes they were very much in need, but you want to preserve their dignity and if they pay even 10 cents for something, ther is a feeling of it being yours, not someones hand-me down. And if you volunteer at the place you bought it, It brings a whole new meaning to the word "Ownership".

The people in the neighborhood realized we were part of the neighborhood and we got respect for that.

Some people joined the services, and that was nice, but that was really not why we were ther (do not tell the episcopal church), The services were for ourselves.

The once despised summer camp became a highly respected one. Some other chuch members came in, some understanding... some not. Volunteers from other parts of the world (Japan and germany, I remember) came. One of the neigborhood children adopted us and particularly Frank. Things were good and then we started working with the stse mental health section to see if we couldn't work with that group of disabled people. We rented a house and started with 3 men, who were delightful, ut truely troubled.

Somewhere the donation end and food co-op end becane so big, that we rented a truck and then bought a van. We started to get furniture and that when through the clothing exchane. I remember working with the workfare people, who many were having alhocol problems, but they would come give completely, working hard. Going away with some food and the proper number of hours completed for a week. That was good.

Chuches would come in on Thursday nights to provide meals to the residents ofthe shelter and the volunteers(us too, remember this was done without a paycheck).

In all of this I won't claim any more than the grunt work portion, it really was Frank's vision and energy and dynamics that brough it all together and he and the executive secratary were the only peroson recieving a small salary. Me I got to learn what a ripe mango was, from one of the neighbor at the food co-op.

Things were not easy and there were many struggles, but we got through them.

There were some blackdays, one where I was involved with someone I shouldn'y have been, where I got to see how rathful the fundamentalist mind could be, Frank and Marie and Walter stood behind me and fought for me in that one.

Then Penny contracted(?) leukemia and died after only a very little bit. Then we saw how little the church in general really cared about us, cause they would not provide other volunteers so thst we could morn or take a day off for reflection or rememberance.



By this time I had been at the Health Department for several years, the environmental company had changed my results from some of my testing in a report to the parent company. I complained and was told the change was insignificant. I left and several years later the parent company folded over that misinformation - not too significant.

I had managed to reconsile with my parents and had even made a surprise visit to them in Houston, I had also deeply bonded with Frank's Father who was in his late 70's. We would go out to different diners amd places in the area ust to go out and have a bit of fun. Stamford was not on our list of having fun, Sleepy Hollow was, Mistic was, Rhode Island was. Sometimes the ice cream place by west beach was, mameroneck many times was. Sorry Stamford, you don't make the grade even for old people.

Public health was wonderful and terrible at the same time. I was brought in because of the applicants, I was the only one with experience in environment testing. My ranking in the testing was 4. So i got to learn the ropes, then I started changing things and learning things and I would make a couple of mistakes, mostly because in the winter and early spring we were not busy and it left me with too much time on my hands.

They sent me to an entomolegy class and a pool chemistry class and a class on running the blood machines, then they gave me a computer.

Slowly we turned up the volume on the environmental testing, I starting getting samples from local environmental groups, talked with the Noth Stamford association and got poeple interested in testing their wells. I started expanding the kinds of testing we were able to do and let my curiosity go wild. My boss encouraged all of this and now there is no down time (here this city residence) for me, just busier times. And no there is no way the person that is left and my boss can add to what they do either, so what I used to do is no longer occuring.

So todays dark news is that they still don't know the infection source, that the vanco didn't immediately fix it is also ther concern. They also found a small spot in the lungs, which makes them wonder if I am aspirating "things" anyway. They still have some tests pending and another one to do...and may be more because my hemoglobin has dropped significantly.
some of these might explain the crazy loss of energy I have been experiencing suddenly with no warning. I am not worried about the vanco - I don't care what antibiotic it is, things take time, we aren't spraying chlorox on the bacteria. The lung thing is a bit worring because I do not want to go through he forced cough therapy to clear it...it would hurt to much. The hemoglobin thing has me the most worried, cause I have never experienced low hemoglobin and tho it explains a lot, it is something new and I really do not waant to deal with any more 'new' things of this naature.

So read in peace all. Hope the randomization from the hospital bed give some insight in the person JoeyK

Each new day

Has been better, but if i would look at yesterday vs today, it wiuld be worse. Why?
I am more discombobulate and confused, a few more tremors and no more clear vision. Am I worried? Not at all, becaue it is better than the day before, I seemed to have lost the fever with medicine change and hae foud the current management of the headache effective.
If I looked a week ago, I would not recognize me because there is such a great change.
Reality tho, I am still completely disabled at this time.
When I came to Stamford, in 1977, I came for a spiritual quest which I did not understand. Frank and Marie came for one they did inderstand and form them the area was mostly barren. Not saying people are not spiritual, just the way of being, your spirituality, was not first.
Finding people to understand what was wanted at St. Luke's was even harder. We did not want t be to whities who came in and did what thet thought would help and then go home to the safety of our middle class homes at night.
Walter and his wife, the german, Bob, Penny, Jill and myself moved into the building as it was still being changed...The neighbothood noticed. Two sisters who lived a couple of streets away came down and started helping, An organist from down the streets helped with services.
Several people in the beat up homes across the street, who did not and some who did came over. Some people from some of the oversight clergy's home churches came, Episcopal, in Greenwich, Old Greenwich and Darien and they spent much of their free time with us. With Frank ,Marie and their son, this was the initial communitty of St Lukes.
An Emergency Shelter for agencies to refer people to, a clothing exchange (think person to person) for the neigborhood, The large emergency shelter for the red cross to use was functional, but not a full reality yet.
The chapel had services again and the summer camp had some respect..but there was a lot more to come.
If I told you we came to perfect harmony each time, or even most of the time, it would be a lie. That most of us had to continually struggle with out ideas being the best or our way being the best was the truth. That we tried to substitute our ideas with what we believed together as real and would be the best for the people in the neighborhood was a struggle.
I may add more to this but I now need to rest.

Beginings further on

Today was a good day, I do not wear the eye patch at night and for a brief moment when I opened my eyes I could clearly see my feet. It went away, but that was encouraging.
The pain med that they have been giving me gives me up to 10 hours of relief, sometimes (and it aint advil). The Tylenol has been keeping the fever under control, but I still get really tired very quickly. Swallowing is the harder isssue to understand, I can drink some liquids very, very carefully, and swallowing solid foods is imposible, but I can eat a banana.

I do not remember the month St Luke's opened, but the core of the community of St Lukes was formed long before we tore down one piece of sheetrock on Woodasnd Place. We were commited to helping each other (not simply and there were always struggles) . So survival in Stamford was not an issue, but it did not make Stamord a nice to live.

About this time, I was hat my third job in Stamford, an independant environment lab that sent me around the country, where I realized it was not me, it WAS Stamford!
With Dairy Queen, the Terrace club, movie theaters, the sitting room ( a restaurant where Bull's head diner is now), the and the beachonly places to go out(I am sorry the topless places were here then, but not interesting to me) and there are all the summer church fairs, which are small, but nice and the beaches which are also small and nice, there is NYC, much nicer.

So we went to Wyoming with the job for 3 weeks and everything is isolated there anyway and I did my work and didn't notice any thing with my NE, Stamford, NY coworkers.
The we had 2 three month stints in Huntington, West Virgina, and thats when my eyes were opened!

There were poeple in this town and diners and restaurants and my shift started at midnight
We were downtown Huntington and I would get up and go out, eat, see things and talk to people. Go into work, do my job, go to sleep and start over. On my off day, since I was topsy turvey sleep wise, at midnight I would go to a truck stop to talk to the waitress ( couldn't do more, cause the company cars were at the plant), But I got to see Tom Jones in concert ( a true riot) . My coworkers always stayed in the motel-unless they went en mass out to eat.
I actually did not notice, but one of my coworkers saw how I was with the locals and asked me; "you're not afraid?"
"of what I replied, thry're nice people."
They were afraid! So for 6 months, I got to enjoy the hospitality of another town and its people all on my companies money. I know the first part of the job was in early spring and it was not nice weather wise and I stayed in a lot also, but the spring was beautiful!

So what did I learn? That if a stammi(new) is not running some one down either literally or in some power mad scheme, they are to afraid to reach out to say hello. They are afraid of differences, afraid to be friendly because it might cost them more than they can afford. They afraid of even acknowledging someone is saying hello. I think their own fear of not having is costing their ability to be a warm and friendly people.

That was insight on Stamford from Huntington, West Virgiana.